Strength Of Tears

Category: chronic illnesses

An Astonishing Look Into A Day With Chronic Illness

An Astonishing Look Into A Day With Chronic Illness

Ever wondered what a day living with chronic illness and disability looks like? Today I’m taking you on an astonishing look into the highs and lows that can occur day to day, as well as some insight into the strategies that work for me.

From the moment I wake up, I’m already facing barriers. My chronic illnesses make it hard to get out of bed, often leaving me exhausted and in pain. Every day is a balancing act where I have to be mindful of my energy levels and make sure that I’m taking time to rest.

This behind the scenes, focused, look into a day of my life with chronic illnesses, pain, and fatigue is part of a Linkup blog organised by Sheryl Chan from A Chronic Voice. Sheryl has written these questions which I’ve answered to write this blog.

An Introduction To My Chronic Illnesses

In 2009 I was diagnosed with migraine disease after 20 years of undiagnosed attacks. My migraine became chronic in 2013, diagnosed when you have 15+ headache days a month. Every weekend was ruined by migraine attacks.

In early 2014 I fell ill with migraine-like symptoms, which my doctors thought was a month-long migraine attack. When it didn’t show signs of stopping, I noticed whooshing in my ears. My GP told me this new symptom was pulsatile tinnitus. I knew at once this was more than an extended migraine attack.

My local neurologists wouldn’t look into this, and feeling frustrated, I sought specialist treatment in Cambridge. I was diagnosed with Idiopathic Intracranial Hypertension or IIH, a rare brain disease, 9 months after my symptoms started.

IIH medication didn’t help and it became apparent that I had an atypical presentation of this rare disease. The Cambridge specialists were working on a trial treatment for people with the same outlook as myself but I’d missed the deadline.

I had to wait another year for this controversial surgical treatment which I found incredibly stressful but had the support of my GP. Meanwhile I tried every migraine preventative to appease my various neurologists, who were all against my treatment plan, but to no avail.

I became depressed and had anxiety because of grief from losing my Career and active life, disagreements with doctors, as well as worries about experimental treatment. If you’d like to know more about my IIH treatment, please read this blog.

What My Day Looks Like

When I first wake up I am confronted with the pain in my face that I live with constantly, this quickly translates to nausea. My thoughts quickly go to when I can take my medications to combat the worst symptoms, which I have to take with food.

Sometimes I wake very early because the pain is off the charts and I have to take a dose of Oramorph to get me through until breakfast. This is the next barrier as I can’t function until my medications kick in. So my husband, Joel, makes me breakfast and brings it to me in bed. Joel prioritises caring for me into his busy morning. Read Joel’s point of view as my Carer here.

My morning is then dedicated to rest as I take many heavy duty pain relief and preventative medications. I usually fall back to sleep while watching television, either a series of snoozes or a block of sleep, depending upon how high the pain is.

On the highest pain days my body simply can’t rest enough to sleep so I will force rest with meditation which is a brilliant restorative practice. So even if I can’t sleep I get some complete rest, often with the help of an oramorph dose. Thankfully on low pain days I don’t even think about taking any oramorph as sleep is enough of a boost on its own.

My Carer, Sam, arrives late morning and brings me a cup of herbal tea and opens my curtains, to help me wake up at noon. Joel does this at the weekend as it’s vital in helping me become operational. They also get clothes out for me so I don’t have to bend down as this increases my intracranial pressure.

Sam or Joel bring me lunch at 1:30pm so I can take my next lot of medicine, both helping me gather enough energy to shower. Some days are easier than others but I use a shower stool to save energy for getting dressed. It’s painful and tiring to wash my hair so I only do this once a week.

On my better days, I’m usually functioning at my best around 3-6pm, so this is when I usually focus on writing my blogs, coaching journal and self-help downloads. I also write for patients at Teva’s Life Effects which you can find here.

My favourite part of the day is spending time with my family when I manage to make it down to the sofa for a change of scenery. This routine only started at the beginning of 2023 as I’ve been building up my stamina by swimming regularly for over a year.

I head down around 6pm and curl up on the long seat, sometimes napping. Then we eat dinner and watch TV as a family which has really helped my mental health as I feel more connected.

I stay down until about 9pm when I take my nighttime medication which is even stronger than my morning regime. I wind down watching TV in bed with Joel, when we get a chance to hold hands and snuggle.

When I actually settle down to sleep, I play Wordle and other puzzles to help keep my brain working. Then I settle down, wearing my frozen ice hat that helps soothe my pain so I can sleep as my pain is always at its worst at night.

An Eye-opening View Of A Day Living With Chronic Illness

What I consider a daily self-care must do.

Writing about what I’m grateful for in my journal helps me remember the positives, even on days that are awful. Living in constant pain is so exhausting and can be very negative if the pain gets on top of you.

Are you are able to do any exercise? If so, what do you enjoy and does it help with managing your pain?

I started swimming in 2022, when my social worker organised for my Carer to take me. I’ve gradually built up to twice weekly. I find swimming helps my pain levels, unless I can’t get out of bed. I have to take Oramorph when I’ve finished, as showering and dressing wipes me out, despite having help.

Things that help me de-stress in my everyday life.

Things that improve my mental health are essential oils, doing my make-up, organising anything, and swimming. I have to pace myself so everything takes longer than someone without chronic illness.

The household chore I have the most trouble with.

Everything! Luckily I have a Carer and cleaners but I’m gradually doing little chores now that I’m downstairs more, such as plumping cushions, drawing curtains and wiping down the surfaces in the kitchen. The worst chore is when the hoover comes out (I don’t do it) but I struggle with the noise.

What’s breakfast, lunch and dinner typically like. Any diet protocols?

My nausea and pain levels dictate my diet and I crave certain foods whilst my body is going from zero to functional. I always have toast and marmalade for breakfast, and this is my go-to when I’m in lots of pain. For lunch I usually have a sandwich and fruit. Dinner is quite varied as this is my best time of day.

I went vegan in 2021 which I believe has contributed to my overall health being slightly improved. I plan the menu for the week so my family, who are pescatarians, generally eat vegan meals as we eat lots of vegetables, lentils or chickpeas and some meat substitutes. Sam preps or cooks a meal in the slow cooker and Joel finishes it off and serves so it’s a team effort.

People I see most often and my favourite activities to do with them.

Sam comes for 2 hours every weekday and Joel works at home so I love having a good natter and a giggle, although this increases my pain levels. I love going out with my family on my best days, which is usually quite spontaneous to make the most of low pain levels.

Joel is my best friend so we plan date nights at home, visits to the village pub and live music and comedy in the last few years. Music has always been our thing so this is vital to our healthy relationship, although I know I will put myself into a week or so of high pain afterwards.

Do you have any pets and how are they a part of your life?

Having rescue cats has rescued me since I became ill in 2014. The wonderful Salmiakki and Finleaf came to live with us in 2019. Salmiakki (a Swedish liquorice) owns me. He knows when I’m in high pain and demands to sit on me so I rest. They are house cats so they always keep me company.

If I could leap out of bed pain free for ONE day within my current environment and circumstances, I would…

tidy and clean the whole house as I’m a control freak. Letting other people organise my house and leaving things that aren’t as tidy as I’d like, has been one of the hardest things to learn since getting sick. I would also see my best friends more often.

Is there anything else you’d like to share about daily living with chronic illness/disability?

I hope people will realise that we never know what someone else is really going through. Whether it’s how much help I need to get going each day, sleeping all morning or going to bed wearing an ice hat, I’m in pain for every second. Some of the time it’s barely noticeable but I feel it dragging me down.

By sharing what my day to day life is like I hope I can raise awareness of the bigger picture as people only see snippets of me online or see me on my best days in person. I am not sharing this for pity or sympathy and I am not complaining.

The Takeaway

Writing about my day living with chronic illness has been quite shocking to me to see how much help I still need even on the days when I’m able to manage more. I feel strongly the need to celebrate the connectivity I have with my loved ones,

Writing this has made me see how much progress I’ve made since I last wrote about my chronic pain conditions. However, my progress is still very small which has reminded me that I still need care every day to function.

I hope that you have found this blog an insight into life with chronic pain. I would love to hear about what surprised you or if you have any questions about anything I’ve mentioned. Just leave a comment below.

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✋ Hey there! I hope you’re feeling stronger now. If so, sharing the love will help me help other mums with chronic invisible illnesses.⬆ Hit one of those sharing buttons or save these images to Pinterest and I will do a bed-bound happy dance – there’s an image for you!

05/07/2023
How Long a Broken Nose Takes To Heal – My Experience

How Long a Broken Nose Takes To Heal – My Experience

This March, I am joining in again with the monthly writing prompts from Sheryl at A Chronic Voice. It’s been over a year since I last joined in as I’ve been focused on writing my new coaching journal which you can buy now on sale for £26.99 in my Lulu bookstore.

I was going to write about that but I broke my nose and it has taken over everything so I decided to use these March prompts: Dealing; Thinking; Reacting; Experiencing; Viewing, to tell you about breaking my nose.

Dealing

I’ve been dealing with a broken nose since Saturday 4th March. I recognised nearly all of the following broken nose signs, as shown on this Mayo Clinic website.

– Pain or tenderness, especially when touching your nose

– Swelling of your nose and surrounding areas

– Bleeding from your nose

– Bruising around your nose or eyes

– Crooked or misshapen nose

– Difficulty breathing through your nose

– Discharge of mucus from your nose

– Feeling that one or both of your nasal passages are blocked

I felt I needed urgent medical care as the bleeding wasn’t stopping and I had a noticeable change in the shape of my nose. I was also worried that I may have a head or neck injury.

The trauma happened because I have to deal with some strange symptoms linked to my brain being under pressure due to my Idiopathic Intracranial Hypertension (IIH), explained in this blog.

One of the main symptoms I deal with is poor balance and I walk like I’m drunk, especially on high pain days. This has led to reduced mobility and I need walking aids and a wheelchair for distances longer than the length of a bus.

I’d been dealing with a flare-up and had been in bed for two weeks but I had had a lower pain day so decided to go downstairs for a change of scenery and to be with my husband Joel. When I stood up from the sofa to go up to bed, I struggled to steady my feet but I didn’t notice. I went to take a few steps but I fell over my own feet and landed face down, smashing my face on a low cupboard.

Joel was still in the room and as the blood started pouring he jumped up to help. He managed to stay calm as he dealt with the copious nosebleed and blood from the cut on my nose. He helped me get to the car and drove me to the hospital.

Thinking

It was a painful and traumatic experience, which has left me thinking about the incident over and over in a loop. I’ve only been downstairs a couple of times since as it’s affected my confidence and I’m overthinking taking the smallest steps.

I’ve also been thinking about my experience with the A&E Doctor as he made me feel uncomfortable when I was in the consultation room. When I explained what had happened he seemed puzzled that I was in my wheelchair but had fallen because I’d walked a few steps unaided.

This article explains that about ⅓ of wheelchair users in the UK are ambulatory, meaning they need to use a wheelchair but can walk in some circumstances, as I do. All NHS doctors must see ambulatory wheelchair users in hospital but it seemed to be an issue for this particular doctor.

He then tried to blame my lack of balance on the strong medication I take and I couldn’t help thinking that he was judging me. I explained that I fell just as much before I was on these medicines but I don’t think I should have to justify this.

I understand that IIH is rare and that most NHS doctors know little about it. However, I knew that this accident was due to my IIH and I just wish that more doctors would trust that I know my body after 9 years of living with this condition.

I spoke to Joel the next day about how the doctor had made me feel as he hadn’t really thought that the doctor was using ableist language as it was subtle. When I explained what I was thinking about what this doctor had said and how it made me feel, Joel was better able to understand my position.

Reacting

The way we reacted to the initial incident was calm and considered. Looking back I see that adrenaline played a big part of that. We were reacting in the moment but we knew that I needed ice and to pinch my nose to stop the bleeding.

You must go to the minor injuries unit or A&E if you have broken nose signs, such as these on this NHS a website:

– your nose is crooked (not straight) after the injury

– the swelling has not started to go down after 3 days

– painkillers are not helping

– you’re still finding it difficult to breathe through your nose after the swelling has gone

– you’re having regular nosebleeds

– you have a very high temperature

If you think you have the signs of a broken nose you need to assess the extent of your injury to react appropriately. When you do see a Doctor they will determine the extent of the injury and react to your needs based on that assessment.

After the initial incident, I kept checking how my face looked. I had a strong reaction about how I looked when the swelling got worse but this changed daily. However I didn’t react badly to the kink in my nose as I knew they would probably reset it.

Experiencing

My next experience with NHS doctors was so different. I saw a lovely junior doctor in the ENT department about having my broken nose fixed. He listened to me and was understanding about my disability, even wanting to know more about my IIH treatment so far, like I describe in this blog, as it’s such a rare condition.

He did struggle to feel the break as there hadn’t been enough time for the swelling to go down so he got a second opinion. The more senior doctor confirmed I had a broken nose and deviated septum and was sure I should have the procedure.

I was told that the broken nose fix was cosmetic so I had to decide whether to go through this quite traumatic experience. I had to have 5 injections around the nose as I was still feeling some pain after the 3 injections the doctor said I would need.

The doctor applied a lot of pressure to my broken nose as I experienced how to fix it. A lovely nurse held my hand and reminded me to breathe throughout. They were both impressed by how I’d handled the pain which I explained was due to experiencing constant pain for 9 years.

I immediately felt like I could breathe more normally, which I hadn’t realised was a problem until then. This is important as it’s one of the broken nose signs that means the nose needs fixing for more than cosmetic reasons. The doctor was happy with how easily it had gone back into place and I was relieved the experience was over.

Viewing

Now nearly 2 weeks after the procedure I am starting to get back to my normal. I’m still in pain and have some swelling and bruising so I’m viewing this as healing time. As I wondered how long it takes for a broken nose to heal, I found out that it takes anywhere from 3-6 weeks.

It was a nasty, traumatic event so it’s now about viewing my mobility with a little more care to rebuild my confidence to move unaided for short distances in the house. I’m nervous on my feet so I will need to be patient with myself when getting up as I don’t want to have another incident like this.

This fall affected my face and neck where my normal IIH pain is. However, after the immediate agony of the incident, from my perspective, it’s not anywhere near the pain I experience on my worst days as these leave me unable to move.

In A&E, I was given a dose of oramorph because of the pain relief I already take. Viewing the pain on a typical pain scale, it was initially an 8/10 which is the same as my normal bad days. But it’s been 6 or 7 out of 10 most days so I’ve used paracetamol for my pain.

A broken nose will fix itself in 3-6 weeks. You should use ice and over the counter painkillers as I have. You must not ever try to straighten your nose yourself. In some cases people need surgery to fix their nose, so I am definitely viewing my treatment with a positive outcome as it could have been worse.

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✋ Hey there! I hope you’re feeling stronger now. If so, sharing the love will help me help other mums with chronic invisible illnesses.⬆ Hit one of those sharing buttons or save these images to Pinterest and I will do a bed-bound happy dance – there’s an image for you!

23/03/2023
An Exclusive Look At The Challenge An Unpaid Carer Faces

An Exclusive Look At The Challenge An Unpaid Carer Faces

As part of this year’s Carers Rights Day on the 24th November, I have taken over my wife’s blog and am going to provide an exclusive look at life as an unpaid carer, how I manage the challenge of balancing demands on my time and energy, and what has changed as our relationship evolved to include caring for one of us with a chronic illness.

When Laura became chronically ill in 2014, read about this here, and it eventually dawned on me that my role as Husband, Father, best friend and confidante would now be expanded to that of prime and unpaid Carer, life would become a little more complicated, especially as this would need to be balanced with being the main financial provider in the household.

My role as unpaid Carer covers a wide variety of tasks and activities. I will try to distinguish these from the roles of Husband and best friend, though I have to be honest, this is often difficult to do!

As an unpaid Carer for Laura, I need to consider her needs at all times, ensuring that her physical needs are met and that I am aware of those needs at all times of the day and night. At a very basic level I need to ensure that Laura has taken her medicines, eaten regularly, has access to clean water and is washed and clothed every day.

I need to ensure Laura can access essential services, such as getting to a toilet safely. I need to be there to help if she falls or passes out, getting her to safety or calling the emergency services if needed. It sounds very mechanical listing it out but this is how I can distinguish my role as unpaid Carer from that of husband. As the person I love the most and have chosen to spend my life with, she is much more than just this list of needs.

In addition, as Laura’s condition impacts her cognitive function, I handle the more complex elements of her care and help her organise and attend medical appointments and understand the risks and potential benefits of procedures to help her make decisions right for her.

As well as helping Laura with the more complex elements of her care, I also help her in her role as equal partner running the household, making sure she can perform her role in key decisions around finances, household maintenance, childcare and the general running of a family.

I also help her to understand what is happening when, and what decisions need to be taken. As an unpaid Carer, I need to be mindful of Laura’s needs, breaking complex information down into easily understood pieces so she can make decisions that affect her and the family.

What A Normal Day Looks Like For Me

After my alarm I ensure the youngest is on track for college, then I’ll have a quick shower, and while brushing my teeth will check my work emails and calendar for the day.

My first caring concern is making sure Laura has her breakfast ready to take her medicines, so will prepare her favourite toast and marmalade, a cool cup of tea (too hot could burn her, or worse still melt a medicine capsule and release some horrid flavours!) and take her breakfast upstairs, to where I often have to wake her.

I’ll turn on her light, place everything she needs within reach, making sure the handle of the tea cup is where she can’t knock it over. I will then ensure she has her medicines, checking that she takes them, and has enough water for the morning.

Only then will I move onto my needs, getting dressed and ready for my day. Once she puts on her lifeline device, and has taken her medicines, I know she’s safe to be left as her medicines mean she often sleeps most of the morning.

We are really lucky and have a paid Carer who attends daily around lunchtime. Read about how Sam fits into our team here. On the days when she is on holiday, or at weekends, I will give Laura a cup of tea close to lunchtime, and put out her clothes for the day, and prepare her some lunch.

On the (thankfully) rare occasions that her condition and pain levels flare up, I will need to help Laura to shower, wash her hair, help to dry and dress her, as well as help with her access to her variety of beauty and medicinal creams.

Throughout the day I am on hand to pick things up that Laura may have dropped, handle some cat related incident, or answer any questions when Laura is struggling to understand something. As her Carer I’m there to listen to her emotional needs, be patient when her pain affects her mood, offer a listening ear, and a giggle or a hug. These are essential parts of caring for Laura and their impact cannot be underestimated.

Let’s not forget our sons. Eldest is now at University but youngest may well need picking up from college early, or late, depending on his schedule. I’m also there if he needs my taxi service for any appointments or social engagements.

Later I will prepare dinner, again something our paid Carer will have prepared or put in the slow cooker. and sort any washing, cleaning or household task that needs doing. I normally give the youngest the job of delivering Laura her dinner, which saves a trip up the stairs.

Once we are all tidied away after dinner, I like to enjoy an evening watching TV with Laura, where we will chat about our day, catch up on anything important and just enjoy each other’s company. Before bed-time, I ensure Laura’s bed is re-made, she has her nightwear to change into, has taken all of her medicines for the day and has enough water to drink. I make sure she has a small packet of biscuits to combat nausea if it comes on in the night, and that she has her ‘ice hat’ which she normally falls asleep with, as it helps manage her pain.

As Laura can at times be prone to passing out, I tend to sleep lightly, always being alert to when she uses the toilet or if she needs me in the night. Should anything happen, as her unpaid Carer I can help to get her to safety.

Did I mention work? I am very fortunate to be able to work from home, and have access to work communications on my mobile phone too. As a Systems Director I manage a small team of data managers across Europe. It is complicated work, and draws upon my many years of experience.

I have many virtual meetings with people around the world, periods of intense concentration, people to support and invariably problems to solve. I tend to think of my working hours as 8am – 4pm but this flexes as needed around my caring responsibilities. I am always able to catch up in the evenings in that window between dinner and time with Laura.

My main responsibilities as an unpaid Carer are that Laura’s needs are first known and understood. These change daily and it is so important to never assume I know what these needs are, but rather ask Laura to ensure her voice is heard and that her needs are shaping her care.

Then it is to ensure these needs are met, from medication, food, water, cleaning, clothing to medical appointments, setting up household systems and communication with the family and support network. As Laura’s prime Carer, being with her and on hand to help 24 hours a day I take it as my responsibility to consider how I can help to meet these needs wherever she requires my help.

How Caring For Laura Impacts My Well-being

Having hopefully painted a picture of how my day-to-day life works, and my main caring responsibilities for Laura and our family, I also have to think about myself! The transition to accepting the role of unpaid Carer for my wife has not been an easy one. Realising that our family life would be changed forever affected me tremendously.

I am quite a positive person, always looking for solutions and trying to find the best in every situation, but seeing the person I love the most in so much pain, and their life going from a busy Mum and teacher, to being bed-bound and struggling with the simplest of things really hit hard, especially as I felt so helpless.

Being Laura’s unpaid Carer has been hard emotionally, and my mental wellbeing has suffered. Adjusting to a new life, while grieving for a lifestyle lost, with all the freedoms and spontaneity being compromised by putting someone else’s needs first took me through a difficult emotional journey.

Finding my role as Carer, however, gave me a focus and activity that I could understand in helping to work with something I couldn’t find a solution for. Realising that being an unpaid Carer was my way of helping, coupled with being the Father/Husband/Earner helped me to reconcile with a problem that I couldn’t solve, and adjust slowly to our new life.

I have always been able to find positive perspectives, and I am thankful that I still have my wife, that we are together and we’re able to support each other through this transition in roles, and most importantly provide strong role models for our sons.

My physical well-being has suffered a little over the years, especially as my work is quite sedentary, being office based, and with the onset of years and being overweight I am definitely not as fit as I used to be. When your partner is mainly bed bound, inevitably time spent together is also a sedentary experience too. So a renewed focus on fitness and activity is my latest goal in trying to address my well-being needs, and make sure I am fit enough for me, and importantly for Laura too!

How My Caring Role Affects My Work-life

My work-life as an unpaid Carer has had to become ever more flexible. As I say, I am very lucky in that I can work from home, and flex my time around work and caring responsibilities.

The main thing though is that I have to be a strong and confident advocate for my needs. What I mean by that is that I am always clear and confident in communicating how I will be the best employee while also balancing the needs of those who rely on me.

I am always open and honest about my role as an unpaid Carer and when I am available and not. My employers don’t suffer from compromising with the time I need to dedicate to my caring duties. In fact, my employers benefit from my perspective, approach to prioritising, time management and ability to focus wholly on any problem or solution I work on.

Being aware of ‘reasonable adjustment’ rights in the workplace is also something that has served me well. When I became a Father I worked compressed hours to care for my sons one day a week, which was so valuable to us as a young family, with high childcare costs. It ensured we felt we had balanced time and it became a real cornerstone for what I wanted in my work life, especially as an unpaid Carer for Laura.

In the past I have been able to represent the needs of parents and Carers in setting up and running an award-winning colleague network, something I will forever be immensely proud of, as well as being a role model for other leaders with caring responsibilities.

What My Support Network Is Like As An Unpaid Carer

My support network is small but strong. I have relied at times on my father-in-law for contingency taxi or childcare. My emotional support though is what gets me through the tough times, with close friends to lean on, and becoming close to Laura’s paid Carer.

I am also part of a band, and music is such an escape valve for the hurricane of emotions I balance in my life. The release it gives me to just have to think about the next note in a song, comfortable in the knowledge that Laura is happy and safe, means that the emotional elastic band gets a chance to flex and not snap.

Most importantly though, is the network of support we have created as a family. We focus on the positives of life, balancing against the challenges and we remain solution focused. It feels like we work well as a team, each supporting the other. As a whole our family life is happy and fulfilled, which nourishes us all as we each achieve our ambitions.

If I Could Have One Wish Granted To Make Caring Easier…

I would wish that all of my wife’s illnesses and conditions would be alleviated and we could go back to a time where chronic illness was not a part of our family life. This is not wholly true, though, as we have all learnt so much about who we are as individuals, what great teamwork looks and feels like, and how we all can work together to succeed in the face of adversity.

Having the role of Carer is a badge of honour and pride for me. I feel like I am helping my wife succeed in being the best version of herself, and that my role as her unpaid Carer also helps me be the most resilient, empathetic, understanding and above all most caring version of myself that I can be.

A Powerful Perspective Of Life As My Unpaid Carer

It’s been wonderful, challenging and entertaining to read my husband’s perspective about his role as my Carer, especially being one who isn’t paid at all. It’s eye-watering to read about the list of jobs he has to do in the morning before work, whilst I lay sleeping or waking casually to the smell of toast. I can honestly say I’ve never thought of it that way and this will hopefully help me to be more patient and show my gratitude even more than I do already.

My lack of awareness comes from both being in bed, isolated from the real world for the majority of the time, and due to my brain condition. My brain reacts to the extra pressure in my skull, the same way it would if I had a brain tumour so I can struggle to see things from others perspectives unless they tell me repeatedly how they feel.

I also think it’s partly down to the husband-wife relationship. Come on, you know we don’t always listen to what our spouse says! However, Joel hasn’t told me about a lot of what he’s written here about how he felt transitioning into the role of an unpaid Carer.

I was very unwell at the time and could not hold a conversation or retain any information. Thankfully my brain surgeries have allowed this aspect to right itself quite well so I can now take this on. I just wish I’d asked Joel how he felt more, I knew he was struggling of course, but I didn’t know how much.

I too am able to look at the positives of our situation now and know we’ve been able to teach our sons so much more about how to flex and grow to cope with challenging situations. As a team, we’re unstoppable and that includes my paid Carer Sam, who often acts as my proxy in the physical activities of running a household. I couldn’t be prouder of Joel and the boys for how they cope with ALL the challenges they face as unpaid Carers.

I would like to thank Joel for taking the time to write this piece, guided by my questions that came from this year’s Carers Rights Day campaign. Each year Carers Rights Day helps carers in the community know their rights and find out how to get the support they’re entitled to. The West Sussex Carers Support page says:

“This year our campaign will focus on the ways in which Caring Costs unpaid carers. From carers’ well-being and ability to access health services, to costs to their finances and employment options, to the current cost of living crisis which is being felt even more acutely by carers throughout the UK.”

National Carer support organisations that help unpaid Carers know their rights are:

Carers UK

Carers Trust

The UK government also have support materials for Carers

There is also information on the new Carers Leave Bill that was passed in October 2022 here. We’ve found our local carers organisation very helpful, and highly recommend searching what is going on in your local area this Carers Rights Day.

Finally I want to publicly share how grateful I am to Joel for everything he does for me, everything he sacrifices and mostly everything he does to put a smile on my face, and my son’s face every single bloody day. He is an incredible human being and I love him even more after reading this article. In our 25 years together he has only ever shown me kindness and generosity and this seeps through the words on the page here. I am so honoured that you’ve shown another side of me to those who take time to read this blog. I appreciate you taking even more of your precious time to write about your perspective as my unpaid Carer

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✋ Hey there! I hope you’re feeling stronger now. If so, sharing the love will help me help other mums with chronic invisible illnesses.⬆ Hit one of those sharing buttons or save these images to Pinterest and I will do a bed-bound happy dance – there’s an image for you!

22/11/2022
How To Know If You Have Significant Mental Health Issues

How To Best Manage Agony If Your Pain Relief Medication Isn’t Approved

Why do they refuse to treat you when they know the agony you experience without your chronic pain medications? Is it something you did? These are genuine concerns in the chronic pain community right now.

The NICE guidelines were introduced formally in 2021, possibly impacting on professionals treating patients. There are legitimate concerns about this leading to many doctors refusing pain relief medication to patients with chronic pain.

Alongside this, the media are portraying those in the chronic illness community negatively. So I want to address some of these awful stereotyped viewpoints and share how living with chronic pain can impact those who are isolated.

People living with chronic pain symptoms have to manage if they aren’t prescribed pain relief medication or have it removed and social media provides a community that benefits you. It is a platform for sharing your experiences and solutions.

What Are The Guidelines For Chronic Pain Management

The World Health Organisation classes chronic primary pain “as pain that persists for longer than three months and is associated with significant emotional distress or functional disability that cannot be explained by another chronic condition.”

NICE only recommends exercise, antidepressants, Acceptance and Commitment Therapy, Cognitive Behaviour Therapy and Acupuncture for treatment and management of chronic primary pain. Read my article about the NICE guidelines for the details.

The guidelines state there was no evidence that pain management programmes, therapies or preventative medications were effective, however, the research used did not use large studies which leaves the guidelines woefully inadequate. Read about The British Pain Society’s view here.

There’s a long list of pain relief medications the guidelines state as being ineffective for chronic pain, including opioids, paracetamol and many commonly used painkillers. Yet they do recommend antidepressants which seem lacking overall.

The Faculty of Pain Medicine states there is a “real risk that those classed as having “chronic primary pain” will include large numbers of people… to whom this guidance should not apply.” The likelihood is that Doctors will misunderstand and misuse these guidelines in managing pain and patients.

The NICE Guidelines And Chronic Pain Symptoms

As I read these guidelines I felt sick with the idea that others may have my experience of debilitating pain and not get help. Let’s be real, I’m consumed with chronic pain symptoms so my GP does prescribe pain relief medication so I can function, and I am still stuck in bed nearly every day due to the severe pain.

The guidelines aren’t rules, so you can advocate for individual treatment for your chronic pain symptoms, using this section of the guidelines: “When exercising their judgement, professionals and practitioners… [have] the responsibility to make decisions appropriate to the circumstances of the individual”.

This Pain Concern statement shares concerns raised by Blair Smith and Lesley Colvin that “chronic pain has such an important impact on the lives of people who live with it that we need every tool available in our toolbox to help in its management.”

Many chronic pain patients rely on [pain relief medication] to achieve any quality of life. I know chronic pain is torture, dominating every moment of the day… We doctors need to be compassionate and carefully talk to our patients and assess the various complexities of their pain, as it is unpredictable what will work. We need to remember… it could be any one of us.

Dr Rajesh Munglani

These guidelines are causing patients real distress when they are already living an unpredictable life consumed with chronic pain symptoms. Many patients already feel isolated and misunderstood. With such a complex symptom we still need to access pain management clinics and pain relief medication.

What Is The Media Saying About Pain Relief Medication

The BBC have asked over 4,000 adults aged 16-75 about chronic pain experiences. The results suggest 1 in 4 people in the UK live with chronic pain and 45% say their daily life is affected by chronic pain symptoms.

It goes on to talk sensationally about someone’s experience of persistent daily pain and how their experience was made worse by taking pain relief medications. In my opinion this is clickbait, one-sided journalism. It goes on to say: “It’s so easy to sit at home and take a pill and fall asleep. The other way to go is to… basically have a laugh – because while you’re laughing you’re not crying.’” Kev Howard, organiser of a peer support group at a pain clinic says. Read the full article here.

This infuriates me, as taking pain relief medication is the only way I’m able to get out of bed and have low enough pain to laugh. If I go to the hospital I have to take painkillers to get to the car and sit in a waiting room. In fact, taking pills actually enables many people to function. There is no one size fits all solution.

A second article by the BBC, quotes Dr Mark Hainsworth who “wants to see a different approach to dealing with chronic or persistent pain, to help prevent the rise in “opiate hermits”, people unable to work or exercise.”

This, in my opinion, is a damning view of those in chronic pain. It doesn’t recognise that those with extreme chronic pain symptoms do not choose to live isolated lives, nor that most try alternatives to pain relief medication. In fact, I’m now able to exercise again, because I have the right balance of opiate medication and because I’ve had Physiotherapy to help myself.

The commentary on prescription opioids seemingly aims to shame those of us whose pain is life limiting, despite trying or still using alternatives to pain relief medication. There is little recognition of a patient’s individual needs in these cringe worthy pieces of journalism. But the media hasn’t finished yet.

How Social Media Benefits Those With Chronic Pain Symptoms

On the 7th September 2022 The Daily Mail published an incredibly negative story that offended nearly everyone I know in the chronic illness community. The clickbait headline said – Addicted to being sad; and it gave another one sided article. Vulnerable young adults’ social media posts were shared without consent. The author writes that teenage girls are posting online as ‘Spoonies’, conspiring together, faking their illness or twisting their chronic pain symptoms to get the diagnosis they want, for attention and seemingly fame.

This article questions the actions of thousands of people living with chronic pain symptoms and complex conditions. As you can imagine, the repercussions of this article rocked the chronic illness community. I was hurt that the ableist society was louder again, judging those of us who are in pain.

The ‘spoon theory’ helped me in the first months of my illness. Written in 2003, it explains how spoons represent the energy you have for a day, with each activity taking away a spoon until you run out. It’s a well recognised explanation of chronic fatigue for any condition. Read about the ‘spoon theory’ here.

One weekend during this time, when I was seeking answers, I was struck down by unbearable pain and new, strange chronic pain symptoms. My husband was out and I started panicking but managed to contact a friend I’d made in a Facebook support group. She helped me until my husband got home. I ended up in A&E, prescribed multiple pain relief medications by my GP, including opiates. I couldn’t have managed without her support, that of someone who understood exactly how I was feeling. My husband is amazing but he, thankfully, doesn’t know what it’s like to be in so much pain, for so long. Read about my story here.

As I reflected back on my world, I realised how lonely I would be without the support I’ve found on social media. From when I was first ill and found answers by sharing my chronic pain symptoms to the amazing friends I’ve made along the way.

The thought of that not being available to others with chronic pain symptoms is horrifying. You learn from each other by sharing your conditions and stories on your own terms. There’s no pressure to share as a ‘victim’ or to exchange pain for likes.

What is there, in fact, is a genuine community supporting each other, looking out for those with new diagnoses and a collective effort to educate people about invisible illnesses and chronic pain symptoms. I know that I, and many others, share for awareness, not sympathy and that this benefits everyone.

Without this I doubt I would have had the treatments and surgeries that have given me back my ability to communicate, and more. I probably wouldn’t be invested in alternative therapies which help me alongside my pain relief medication, and I wouldn’t have a job as a patient advocate writer.

The Takeaway

I am incredibly thankful that my GP works with me to create an individualised treatment plan. I feel that everywhere I turn options that help me are being taken away from others and it makes me feel so angry that one piece of guidance can do this.

I’m concerned that the pain relief medication that helps me sit up, could be taken away at any time, which is distressing. The media’s imagery of opioid hermits makes this possibility more real for me, and everyone else out there in constant pain.

Picture-perfect snapshots on social media can be harmful for vulnerable people but I don’t accept the Spoonie community encourages harmful content. In fact, those with chronic illness find others who understand and support each other. Sharing images of your authentic experience of being chronically ill, shows the world your reality which helps raise awareness.

I’d love to know what you think about this? If you are a part of the Spoonie or invisible illness community, does social media help you?

Join my Strength Of Tears Instagram community now.

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✋ Hey there! I hope you’re feeling stronger now. If so, sharing the love will help me help other mums with chronic invisible illnesses.⬆ Hit one of those sharing buttons or save these images to Pinterest and I will do a bed-bound happy dance – there’s an image for you!

17/11/2022
The Cruel Impact Of Being In Agony With Brain Fog & IIH Headaches
The Cruel Impact Of Being In Agony With Brain Fog And IIH Headache

This IIH Awareness Month, I want to share how brain fog affects me as someone with IIH headache. IIH or Idiopathic Intracranial Hypertension is a rare brain disease affecting 1-3 in 100,000 people. I’ve had IIH for over 8 years and it has improved a bit with treatment.

IIH., which you can read about here, has no known cause (idiopathic) and is focused in the brain (intracranial) where it raises pressure (hypertension). Headache is my most severe symptom, my second is brain fog, a type of cognitive dysfunction.

The name gives it away, but it’s literally a foggy brain state! Brain fog and headaches are both constant for me. Never getting a break from these symptoms is exhausting. Initially my memory was so poor, to have a conversation was a challenge for me, as a mum, and my family. It’s less extreme now but still affects me daily.

Here I’m going to tell you about the symptoms of a foggy brain and how long it can last. I’m also going to explain how this affects me, as someone with IIH headache and migraines. Then I’ll share tips for better managing brain fog and headaches as a tired mum.

What Are The Symptoms Of Brain Fog?

Brain fog is not a medical term, but a term for those who experience a groggy mind. Read more about brain fog causes here. The most common symptoms of brain fog are short term memory loss, mental fatigue, unclear thoughts, trouble finding words and a sense of non-reality.

For those with chronic illnesses, such as my brain fog and headache conditions of IIH and migraine, foggy brain also often occurs as an inability to follow simple instructions, extreme tiredness, difficulty processing information, being easily distracted and confused.

My symptoms of brain fog show up as all the above but I also have difficulty following a conversation, I struggle to find the words I need and multitasking is hard work! I feel as though I’m wading through treacle, everything slowing down and information is stuck hard.

Others will encounter their symptoms differently, as it can change from day to day and even fluctuate over the same day. My husband, Joel, is often dragged into twilight discussion as I try to share a story from the day. I often lose my place, go off track and then go back a step or restart, finding I’ve forgotten the point of the story anyway!

How Long Does Brain Fog Last?

There isn’t one answer for this, usually symptoms of brain fog are temporary or happen in short bouts over more time; it’s different for everybody. Those with brain fog and headache conditions often have persistent mental fog, which is felt on a sliding scale of severity.

The Coronavirus pandemic shone a spotlight on brain fog and research has shown that those with long Covid will have the symptoms of brain fog for weeks or up to many months. They did find that brain fog decreased in severity over time.

Prior research into mental fog was sparse, but with new scientific studies we’re learning more about brain fog and so improvements for symptom management are more likely. It’s vital to reassure anyone with constant brain fog, that they will not have lasting brain damage.

Mental Fog

Brain fog is like walking through a dense forest that doesn’t seem real. This analogy of brain fog shows how much it can impact your ability to function when a foggy bran is persistent.
How Brain Fog and IIH Headaches Impacts My Life

I believe it’s crucial to raise awareness of IIH symptoms, so I released this blog last year. became very unwell, overwhelmingly with brain fog and headaches, and had to leave my 15 year career as a teacher. These symptoms of brain fog dominate my life with IIH.

I am one of less than 6% of patients with IIH who have IIH without Papilloedema. This is swelling of the optic nerve that can lead to blindness if untreated. IIH symptoms are debilitating and impact quality of life, especially as the most common symptom for us in the 6% is headaches.

The cruel IIH headache I have on both sides of my head and around, below and behind my right eye, is like permanent brain freeze, migraines and facial neuralgia all at once. However, I also have constant, debilitating mental fog which affects every aspect of life.

Brain fog surrounds all of my IIH symptoms:
- Before the pain heightens, I feel agitated and confused
- When it eases I’m dopey and slow to process information
- High pain means poor sleep which leaves me even more tired
- The medication I take makes me sluggish and confused
- Living in the dark due to light sensitivity affects my sense of time
- Hyperacusis (magnified sound) and vertigo makes the world not seem real
When brain fog and headaches work together, my IIH symptoms are incapacitating. When I was first ill these symptoms were so severe I lived in an almost fugue state, impacting all my relationships, even my marriage, as I just couldn’t maintain a conversation.

“Pain like this, felt at the core of one’s being, in the brain, carries an added challenge in interfering with how you think,” Paula Kamen

I’ve had 6 surgeries in the last 7 years, including having brain stents implanted on both sides of my brain. My brain fog improved a little with each surgery as the intracranial pressure reduced a little. It still affects me daily but now I’m able to write coherently.

I’ll always have impaired brain function but now I can see the funny side when the pain eases a little. Brain fog can lead to humorous but frustrating events, such as when I put hand cream on my face or wear a top inside out all day. You just have to laugh!
How Tired Mums Manage Brain Fog

Tiredness can slow your thought process but a mental fog affects the brain’s ability to think clearly. Brain fog is more than tiredness and makes life more even more challenging.
How Tired Mums Can Better Manage Brain Fog And Headaches

All mums experience exhaustion but no amount of sleep will ease a foggy brain migraine or IIH headache. When we have IIH symptoms, life can be extremely limiting and tiresome but any headache condition exposes us to fatigue. This adds to mental fog and makes life even harder to manage.

As someone with IIH headache and a chronic migraine sufferer, I have daily brain fog. I’ve particularly noticed my inability to remember details, have conversations, manage my time and multitask; so I’ve collated this list of tips to better manage brain fog and headaches:
- Sleep Routine – this is often the first thing to go as Mums but with brain fog too we need good quality sleep. I’m not suggesting 8 hours a night, as we’re all different but sleep hygiene is crucial for us all. Keep track of your sleep and what helps you sleep better.
- Eat Healthily – nutrition deficiencies can worsen brain fog so we need a balanced diet. My mental fog has improved a little now I’m vegan and more aware of nutrients. Supplements can also help, read more about that here.
- Exercise – gentle exercise, like a short walk, can help. I don’t mean going to the gym or for a run. Physio got me more mobile and it’s helped my symptoms of brain fog. Now that I swim often, I’ve noticed even more improvements. Walking round the house and doing the washing counts as exercise!
- Keep Hydrated – Regular fluid is important for brain health, but alcohol and caffeine is dehydrating. I drink 3-4 litres to combat dry mouth side effects of my medication, but your body is unique. Try to drink about 2 litres of water a day.
- Relax – listening to my body means I tune in to when I need to rest, usually meditating or doing gentle yoga. To manage your stress you need to do positive self-care acts for yourself. This could be a long bath or catching up with friends.
- Take a Break – regular short breaks from activity, helps us manage better. I use the Pomodoro technique when working, 25 mins focus, then a 5-10 minute break to do my physio or meditate, anything mindful is rejuvenating.
- Get Organised – This is tough but essential for all mums! I struggle to plan a day, now I have IIH symptoms. I start with the simple act of getting up, following the same simple routine. Having a clear plan and structure gives focus.
- Time Checks – pain results in our dopamine levels dropping to make us stop and rest but this also affects our memory. So use your phone for alarm reminders and memory prompts.
- Focus – prioritise tasks so you can focus on one thing at a time and remove distractions. I have real difficulty multitasking, made worse by tiredness. Avoid doing things when tired or anxious so you can focus more.
- Make Connections – It can be easy to feel isolated when we are struggling with mental fog. Connecting with those who understand what you’re going through can be incredibly helpful, whether it’s online or in person it gives you support
I’ve created this free wellness planner to help you prioritise for better life balance, which will help you organise your way through brain fog and plan for dealing with the symptoms of brain gog ad headaches. Simply click on this link to sign up for your free copy. Please feel free to ask me any questions you have.

If you’re struggling to cope with brain fog, it’s important to speak to your doctor or seek professional help from a therapist, counsellor or life coach. They can help you manage your symptoms, emotions and focus on finding solutions.

In conclusion…

The symptoms of brain fog affect people differently, depending on the cause and symptoms you experience, so what helps can be different for each person. As women and Mums, we may also be affected by hormonal changes which is important to be aware of.

For me, brain fog and headaches, especially my IIH headache, has impacted my brain function from the day my symptoms started. It affected my ability to have conversation, and even now after six surgeries, I often still don’t join the dots when processing information.

There are lots of things you can try to help ease symptoms. To find the combination that works for you, track your symptoms and what you use to work out what helps you. Many treatments involve lifestyle changes and day-to-day management of the symptom. This IIH awareness month, see how I experience IIH by checking out my blogs. You can see how another mum found managing IIH symptoms in this wonderful guest blog.

✋ Hey there! I hope you’re feeling stronger now. If so, sharing the love will help me help other mums with chronic invisible illnesses.⬇ Hit one of those sharing buttons or save these images to Pinterest and I will do a bed-bound happy dance – there’s an image for you!

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20/09/2022
6 Reasons To Be Grateful For My Amazing PA This Good Care Month
How Will The New Guidelines Affect People With Chronic Pain In The UK

The NICE guidelines for managing chronic pain in the UK only recommend CBT; ACT; antidepressants; Acupuncture and exercise programmes. Pain relief is no longer recommended, although changes should be managed with the patient. Instead we’re losing quality of life because the guidelines for the chronic pain treatment UK is unclear.

6 Reasons To Be Grateful For My Amazing PA This Good Care Month

Every July Hertfordshire Care Providers Association (HCPA) raises awareness of the caring profession in the UK, hoping to boost recruitment, thank those in social care and break some of the stigma attached to caring. Read about it here.

During Good Care Month those who are cared for and caregivers share their stories. I want to illuminate Carer’s skills and qualities when working with vulnerable adults. Having a government assisted Carer has changed my family’s lives as it gives everyone a break from the harsh reality of life with a disabling condition.

Unpaid care is becoming more common with the pressures on the care sector but social care can change lives for everyone, including unpaid carers already in place. This blog is a look at being an unpaid Carer from the perspective of a friend who cares for her husband.

This blog is mainly a thank you letter to my amazing personal assistant (PA) or Carer, Sam. I share the reasons I’m grateful for her in my examples of the 6 Carer’s skills I see as a gift. My aim is for other Mums to feel that having a Carer isn’t giving in or not an option for them.

This open letter will surprise Sam but I want to shout from the rooftops about how she supports me and my family and recognise how grateful I am personally for how she employs her expertise to give me the support and friendship I need as a younger adult client.

The guidelines are written for patient care by a committee of healthcare professionals. I’ll break down the guidelines and share how they affect patient’s quality of life from the perspective of medical professionals and those in the chronic illness community

Why My Carer’s Skills Are An Excellent And Valuable Gift

The latest NICE guidelines recommend group based exercise, psychological therapies (ACT or CBT), antidepressants and acupuncture. Pain killers are no longer recommended for managing chronic primary pain.
Dear Sam,

As the author Amy Leigh Mercree once said “Kindness can transform someone’s dark moment with a blaze of light. You’ll never know how much your caring matters.” These words are so important for you, and every dedicated caregiver, to hear from the person you care for.

How often do the people you aid get the chance to tell you exactly how valuable you are to them? I’ve needed care for nearly 8 years, due to a rare and debilitating brain disease. I feel privileged to have the support of a professional Carer and feel incredibly lucky that that person, for the last 5 years, has been you.

I learnt of Good Care Month this year. As I feel strongly about shining a light on what Carers do, so when I saw a suggestion to write a thank you note to your Carer, I knew I had to write an open letter. This is my way of raising awareness of Carers skills and worth.

Accepting you need help as a 37 year old Mum with chronic illness is tough. There are many stigmas around social care and caregivers but those linked to care for those in the 18-64 age group, stand out to me. There’s an even stronger barrier for me as a Disabled Mum.

One reason for this is that younger adults are more likely to receive local authority assistance for learning disabilities and mental health issues than physical disabilities. This means that most Carers who’ve worked with me haven’t really known how to engage with me or my family or I’d feel them pitying me.

I love that you’ve never done this Sam, you simply treat me like an equal. What you do for me and my family means so much more than I can write. However, some things are just between me and you, and can’t be shared in an open letter. So let’s just say that what I love most about you is our shared filthy sense of humour!

This Good Care Month, I’m sharing just 6 of the reasons that make me value you as my Carer:
1. Building Strong Relationships
  
  As parents, it means so much that you’ve taken the time to build strong connections with us all, especially our boys. We all feel we can be ourselves and the boys don’t feel like there’s a stranger in their home and safe space. Feeling we can be ourselves is a gift.
  
  You’ve thrown yourself into being a part of the team, realising that this is our way of having some control. We take pride in working together and as we prioritise listening to each other and solving problems together, you prioritise this too. Sam, you’re part of our family because, honestly, you’re as much of a weirdo as we are.
  
  For others caring for adults under 65, please take the time to look at the family as a whole. One of the most valuable Carer’s skills is to build good relationships. If you’re coming into the family’s space make sure everyone feels comfortable when you’re there.
2. Helping With The Little Things
  
  By taking care of my needs you help me stay organised so I manage to stay on top of things. The small things you do for me matter, such as, getting my clothes out, ensuring I have enough water and helping me get dressed. This allows me to save my energy to use elsewhere.
  
  You making lunch for me is the difference between me being able to write or needing rest on my better days. I can be Mum AND focus on my goals when I have energy, which is why this matters. I can’t imagine trying to keep everything straight without your help, although your clumsiness is an add-on I’m not sure I asked for – teehee!
  
  Some skills are just a part of the job but this Good Care Month is the perfect time to recognise just how crucial doing the little things are for those of us with chronic illnesses and disabilities. Creating a routine is pivotal so that we don’t have to ask you, which takes energy itself.
3. Having Emotional Support
  
  Sam, you’re a huge support during tough times, whether I’m feeling low, having a pain flare or just need someone to talk to, I know you’re there for me. You’re switched on to how I am when you walk into the room; a rare gift that only those closest to me have. Being aware of this calms me as much as your excellent cuddles do.
  
  We’re so lucky to have found the right fit with you, it hasn’t always been this easy. Knowing you’ll make sure I’m taking care of myself takes some of the pressure off of Joel. This just makes me value you more and so you’ve become like a sister to me.
  
  Being emotionally supportive is one of the most vital Carer’s skills. As a sick and Disabled Mum, there’s always something to worry about and being ill is exhausting. Being aware that communication with a Carer will be easy helps every family member’s mental health.
4. Lending A Hand
  
  You’re always willing to get stuck in Sam, be it normal jobs around the house or the odd jobs that come up. Being mindful of this helps me take care of myself. I love sending a recipe and being sure you’ll prepare or cook dinner as my proxy, giving Joel one less job.
  
  However, it’s even more important to notice the things you do for us if Joel has a meeting or is away on business, like cleaning up after the cats, picking the boys up from school or taking me to appointments. Of all these Carer’s skills, this has the biggest impact on family life.
  
  In Good Care Month it’s important to appreciate the smaller things as these often just happen. If someone has become part of the family, there’s often an open offer to grab essentials or check in when off duty. As long as boundaries aren’t crossed then this is a real gift.
5. Creating More Life Balance
  
  Sam, you help me create more balance in my life, both emotionally and getting the balance between work, goals and rest. For me, being certain that my family has less chores helps me feel less of a burden, supporting my mental health. It also gives my family more balance.
  
  You help me keep a positive attitude by making me laugh, even if it’s you being daft. Yes this hurts when I’m in pain but it’s what I need. If you’re having a bad day you still make sure we giggle at something. Having you around is a tonic and we appreciate you more than you know.
  
  A Carer’s skills at bringing more opportunities for life balance into the life of the person they’re caring for is incredible and important to mention in this Good Care Month blog. This is an unexpected outcome for the whole family, especially when things are tough.
6. Supporting Goals and Dreams
Sam, you take on board my goals and future vision when I’m speaking to you about unrelated things or even thinking out loud. You know my goals, such as building up my social life, and you’ve seen the frustration I feel when my illness holds me back.

This year my social worker helped me get back to swimming again regularly but I can only do that with your support. I look forward to our swim sessions, being confident you’ll keep me safe. To top this all off, you’re an amazing friend and I can’t imagine going through life without you by my side.

This isn’t something you naturally consider when hiring a PA, but it makes such a difference to my life that I have to mention it. Be it having help with planning a rare trip out, holiday packing or talk of things you dream of or aspire to, a Carer can help you achieve.

Beyond these 6 Carer’s skills I want to thank you for the extra gifts you bring that are personal to us, Sam. You listen when I wander down my Wonderland rabbit hole chats, aware that my brain has to get from a to b, even if there’s a long detour. I appreciate your patience.

Thank you for driving more slowly when I’m in your car. I know you find it hard because you let me know every 10 minutes of the journey! I’m grateful for the effort you go to (and the panic that follows) when I’m nauseous and ask for something to eat you’ve never made.

I wish I’d known 8 years ago what I know now. I felt I wasn’t sick enough for support and didn’t know what skills or qualities I needed to look for. Some Carers haven’t been right for us but thankfully you fitted in immediately and it’s a gift that we found you when we did.

My aim for this letter is to show how, when these 6 Carer’s skills are used well, a Carer is an invaluable resource. I hope PAs and Carers consider how to develop these in their own practice and that we break the stigma that Carers are only for ‘old people’.

This Good Care Month, I also want to acknowledge those who could receive care. Your concerns about having a PA as a Mum are valid but know that excellent Carers are out there for us. I now see care as an opportunity to have someone help me be a more engaged Mum.

Looking back at the quote I shared at the beginning of this letter, I hope you can all see that having the right support matters. Sam, your kindness does allow light into some of my darkest moments and this means more to me and my family than you’ll ever truly comprehend.

I want you to know you’re a vital and valuable member of our team. Thank you Sam for all you do for me, Joel and the boys.

Yours, Laura 💜💜

In Conclusion…

Good Care Month aims to raise the profile of the social care sector and promote career opportunities. It’s important because it’s a chance to give Carers the recognition they deserve. It takes a special kind of person to work in social care with these Carer’s skills.

The core qualities a Carer needs are passion, courage, dedication and compassion. One day it could be you needing care or caring for a loved one, so I want to make it clear that caring isn’t just wiping arses. However you may find yourself in strange situations, so a sense of humour is the quality I rank highest.

Unpaid Carers are another topic but I want to mention it as the 2 hours of support I get each weekday from the local authority gives respite for Joel and my sons. They can take a break without any guilt and Joel feels assured as he knows I’m not alone and isolated.

My children have become young Carers and it’s fascinating to hear their perspective, which you can read in this blog I wrote recently. They’ve developed compassion and empathy, which are skills for life, and the way we communicate as a family has evolved greatly.As a family we’re found that the root of good care is in building strong relationships and working as a team so everything else falls into place. I hope I’ve shown that having a paid PA or Carer as a young Mum is worth it, if you take time to find the right fit for you.

There are so many Carer’s skills that I haven’t highlighted here but at the core is the ability to listen as everything is built around the needs of that person in their specific situation. Sometimes a Carer is faced with difficult decisions and this deserves our praise and respect. What is key is that the Carer works with us on our goals and priorities.

If you would like some support with planning your wellbeing priorities please download my free guide to setting achievable goals that you can work on with your Carer.
DOWNLOAD YOUR FREE PLANNER

““As #GoodCareMonth comes to a close, it is important to recognise the silent care and compassion given every day in households, care homes, hospitals, hospices, and schools up and down the UK.” Read about what is happening in social care right now here. ”

— Unknown (see link below)

Read more in this Good Care Month Article by UK Community Foundations

Carers deserve our appreciation everyday, however, I’m glad to have had this opportunity to show my appreciation for Sam. Learn more about Good Care Month here and find out how to get involved yourselves, I hope these photos show how much joy can be found by having a Carer.

Best Wishes to you all,

Laura 💜

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✋ Hey there! I hope you’re feeling stronger now. If so, sharing the love will help me help other mums with chronic invisible illnesses.⬆️ Hit one of those sharing buttons or save these images to Pinterest and I will do a bed-bound happy dance – there’s an image for you!

P.S. if you’re a Carer or looking to hire a paid Carer or are given the opportunity to do so by your social worker, find out what you need to know with these resources:

Are You A Carer – www.england.nhs.uk/commissioning/comm-carers/carers

Carer’s UK – www.carersuk.org

Carers Trust – carers.org

Support for Carers – www.nhs.uk/conditions/social-care-and-support-guide/support-and-benefits-for-carers

Young Carers – carers.org/about-caring/about-young-carers

Carers Mental Health www.northtynesideCarers.org.uk/looking-after-your-wellbeing-as-a-Carer

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28/07/2022
How Will New Guidelines Affect People With Chronic Pain In The UK
How Will The New Guidelines Affect People With Chronic Pain In The UK

This is the first of two articles I’m writing to highlight concerns about the chronic pain treatment UK. I first became aware of Claire Swain’s campaign to petition the government to review the draft NICE guidelines during the one year consultation period.

Although these guidelInes affect millions of patients with chronic pain in the UK, it didn’t get enough signatures in the alloted time. So a new petition was started and helps raise more awareness.

The guidelines are written for patient care by a committee of healthcare professionals. I’ll break down the guidelines and share how they affect patient’s quality of life from the perspective of medical professionals and those in the chronic illness community.

What Are The NICE Guidelines For Chronic Pain Treatment UK

The National Institute for Health and Care Excellence (NICE) published these guidelines in April 2021 on the assessment of “all chronic pain (chronic primary pain, chronic secondary pain or both)” and the management of chronic primary pain in over 16s.”

The guidelines clarify that “Chronic primary pain is pain with no clear underlying cause, or pain (or its impact) that is out of proportion to any observable injury or disease.” Chronic pain in the UK is defined as persistent pain, lasting longer than 3 months.

Conditions of chronic pain in the UK classed as ‘primary’ pain are given as: “fibromyalgia (chronic widespread pain), complex regional pain syndrome, chronic primary headache and orofacial pain, chronic primary visceral pain and chronic primary musculoskeletal pain.”

This response from the British Pain Society concludes that “Chronic primary pain… is difficult to diagnose, even for specialists… Yet the guidance recommends that such patients should only be offered ‘antidepressants’, psychological therapies, acupuncture or group-based exercise.”

Recommendations for managing chronic primary pain in a “collaborative and supportive relationship” are based on evidence from clinical trials, forming chronic pain treatment UK. However, professionals have raised concerns over the quality of this evidence.

The Faculty Of Pain Medicine gave this response to the guidelines. They note their concerns about the risk to patient care for those with chronic pain in the UK, stating the need for ongoing review of “how pain is managed… [for] the full spectrum of patients”

Section 1 of the guidelines focus on person-centred assessment, which is largely welcomed for the chronic pain treatment UK. It suggests patients are asked to “describe how chronic pain affects their life, and that of their family, carers and significant others.”

Sadly, the message that the guidelines for assessing chronic pain in the UK should meet the unique needs of the individual are eclipsed by potential consequences of misinterpreted guidelines. It’s likely that this will become a blanket policy for all with chronic pain in the UK.

This makes it highly likely that underlying conditions will be missed and pain relief will be withdrawn or not approved for those in desperate need. The guidelines are not mandatory but the chronic pain treatment UK could leave many with little or no quality of life.

This petition is now closed as there weren’t enough signatures. It said that “A number of commonly used and vital treatments for pain relief and management are no longer recommended, and we believe the new guidelines do not meet the needs of people suffering from chronic pain.”

Medical Professionals On The Guidelines Impact On Life Quality

The NICE guidelines have been called out as cruel by experts, such as Pain Concern, who released this response, stating “As we feel the guidance is based upon crafted-together evidence rather than scientifically-strong evidence, then to remove much of the current toolbox seems to be poor timing in our view.”

The Faculty Of Pain Medicine, The British Pain Society, The Chronic Pain Policy Coalition and the Royal College of General Practitioners released this joint statement in response to the NICE guidelines. It highlights the process for patients with chronic pain in the UK, who already take medication.

“If the patient declares benefit from the medication then a shared plan can be developed using shared decision making processes, explaining any risks and the lack of evidence.

If the patient has no benefit from the medication, then using the same process, a staged reduction plan can be formulated. In all cases, additional or alternative methods of managing pain (as outlined in the guidance) can be explored.”

This comprehensive response from the Cochrane Pain, Palliative and Supportive Care (PaPaS) focuses on the evidence used by NICE for the chronic pain treatment UK guidelines. It notes how hard it is to measure how treatment affects people with chronic pain.

Their response says “The committee rightly identified throughout the document that quality of life was of key importance.” But go on to highlight the data chosen and how it was presented in the guidelines, is average due to such a small difference in pain levels.

Saying this makes it unlikely to show much difference in areas such as quality of life or sleep for those with chronic pain in the UK. But they add that “There is abundant evidence that large degrees of pain relief are associated with large benefits… in terms of quality of life.”

They affirm this with clinical trial data from almost 2,000 participants, saying “For fibromyalgia there is good evidence from individual patient-level analysis that those with good pain relief have large benefits in quality of life…(sleep, depression), and their ability to work.”

These responses clearly state the potential impact on life quality. It’s clear that the chronic pain treatment UK should be, in most cases, a combination of pain relief and additional methods.

However, these statements by professional bodies suggest serious concerns about the poor choice of evidence to support these latest NICE guidelines, which is incredibly frustrating. This opens the guidelines up to misinterpretation of the chronic pain treatment UK.

The guidelines clearly refer to changes to medication already taken by patients with chronic pain in the UK. Where it’s beneficial, medication shouldn’t be removed. Sadly we’re seeing this isn’t the case for many chronic pain patients, leading to a poorer quality of life.

How Will Poor Chronic Pain Treatment UK Impact Quality Of Life

I’m sharing how these guidelines have already affected those with chronic pain in the UK, despite this campaign now being closed. With Claire’s permission I’m using evidence from the campaign, Claire’s experience and comments from my own posts about this. Visit my Instagram here.

One experience shared via the campaign was a woman who’d experienced medical gaslighting where her pain management team had told her GP to stop her pain medication. In this post she says that her “medication supports her ability to function so she has a quality of life.”

Here, Spoonie Mama writes “I spoke to my Dr this morning then cried for ages. She was rude and questioned my pain. She told me she wants me off all opiates and I have been taking it for 6 years to help me with breakthrough pain with no problems. On top of that I had major surgery recently and my pain is sky high.”

These changes in the chronic pain treatment UK, show how the guidelines are being misused and causing distress. There are myriad reports from those who’ve had, or been told, their pain relief will be removed or their pain has been dismissed (Medical Gaslighting).

What’s clear from these experiences from the chronic pain in the UK community is that the NICE guidelines are to blame for the impact on patient’s quality of life. When patients, especially women’s, ability to function is questioned they feel the need to prove their pain is real.

““I’ve spoken to far too many [women] who’ve been told that their problems are “all in the mind” only to find, after much banging of heads against brick walls, that what was dismissed as psychological was actually frighteningly physiological. These people are now at risk of going through horrific pain that meds could dull down.”

— James Moore
Writing in the Independent Moore comments on the NICE guidelines recommendations for managing chronic pain in the UK: CBT; ACT; antidepressants; Acupuncture and exercise programmes. He says “the idea that a run around the block will zap the torment of people in chronic pain is patently ridiculous.”

Claire Swain is navigating and sharing her own experiences. She wants to be clear that it isn’t that the approved treatments are bad as they may work for some, but there’s vast numbers for whom they don’t work or only work in combination with pain relief medicine. In this post she says:

“I have a limited quality of life but I am grateful for what I have. I would have no quality of life without my pain relief and I am not going back to that. It would be game over for me. There is a big difference between addiction and enabling function.” Claire Swain

On one of my own posts to raise awareness of this campaign, Karen commented: “Taking these pain medications away has already led to suicides! We are not saying alternatives, such as acupuncture (although it didn’t for me) don’t work but in conjunction with pain relief, not instead of!!” Check out her profile here.

When I think about what quality of life is for me, I think of being a Mum, wife, writer and friend despite spending most of my days in bed. What’s most important to me is connection, love, laughter and being there for my kids. I can do it all if I have the support I need.

None of this would be possible for me without pain relief. Managing my pain means that I can be engaged in life. But if I didn’t have this pain relief I wouldn’t be able to move, not even lift my head off the pillow! How’s that for quality of life?

I’ve experienced chronic pain since 2014, saying in this blog “After I’d blacked out… my pain levels were so high, I was shaking… My GP prescribed a cocktail of pain relief, including Oramorph… My chronic pain conditions [leave] me unable to do anything.

The Takeaway…

These testimonies show that patients with chronic pain in the UK are losing their quality of life because the NICE guidelines aren’t clear about the withdrawal of medication. Doctors are already treating the guidelines as a blanket approach and removing pain relief incorrectly.

This statement from the Faculty Of Pain Medicine highlights that healthcare professionals must make these “decisions appropriate to the circumstances of the individual patient, in consultation with the patient and/or guardian or carer.”

The recommended alternatives to pain medication won’t work for many patients with chronic pain in the UK but if used alongside pain relief they may enable better function. It’s vital that GPs know chronic pain is torture and for many of us, painkillers are vital for our sanity.

All we really want from the chronic pain treatment UK is the ability to individualise how we manage our pain with the support of medical professionals. We should not need to prove our pain is real for this to happen. With support we have a quality of life, which is priceless.

And Finally…

I’d like to thank Claire and her team who have worked so hard on this campaign. She said “The campaign has a Team that I am beyond grateful for their support and hard work.”
- Sasha Twinham
- Ann Sinclair
- Kelly Brownell
- Terri Hester
- Niki Boswell
- Leanne Robson
- Jackie Low
- Georgia Siobhan
- Julie Andromeda Mao
Laura 💜
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✋ Hey there! I hope you’re feeling stronger now. If so, sharing the love will help me help other mums with chronic invisible illnesses.⬆️ Hit one of those sharing buttons or save these images to Pinterest and I will do a bed-bound happy dance – there’s an image for you!
16/06/2022
What Are Young Carers Capable Of With Focused Vision For The Future
What Are Young Carers Capable Of With Focused Vision For The Future

Families living with chronic illness come across many obstacles so many develop new ways of working when a parent or sibling becomes ill. The complexity of each family’s situation is unique and wide-ranging but I believe every family can have joyful moments.

Our family has worked as a team since I became disabled and mostly bed-bound due to chronic illness. We’ve found the importance of effective communication crucial to our family going beyond just coping. We chose to be open and honest and prioritising our well-being, so we can thrive individually and as a family. Read this blog about putting your well-being first.

In late 2014, after my condition had worsened significantly, I was allocated a social worker who wanted me to have paid care to take the pressure off of Joel. My boys remember key moments from that time and can now articulate their feelings and reflect on their journey.

By seeing life through the eyes of young carers, we can recognise the obstacles to an enriched future and empathise with them. By listening to young carers’ views we can adapt negative situations into positive experiences and focus on their individual needs.

What Are Young Carers?

Young carers are under 18 or young adults who help to look after a relative with a disability, illness and mental health or addiction problems. Caring can be an isolating experience but with the right support there’s a much better chance of future success.

Young carers are likely to achieve at a level significantly lower than the expected levels for their stage in schooling. Covid19 has urgently increased the support Young carers need to narrow the gap.

It’s thought that as many as one in five young people are young carers (University of Nottingham 2018), with the COVID-19 pandemic many more children are taking on care responsibilities.

What are Young carers tasks?
- Practical tasks, like cooking, cleaning or shopping.
- Physical care, such as aiding someone with poor mobility.
- Emotional support, including talking to someone in a panic.
- Personal care, such as helping someone get dressed.
- Organisation, including sorting mail and bills.
- Managing collecting prescriptions or sorting medication.
- Communication support, such as making phone calls.
- Home help including looking after siblings.
Young carers may be giving care from a young age and don’t know any difference, but others may become carers overnight. Children usually want to help loved ones but it’s your choice how much and the type of care you give, or whether you should be a carer at all.

Young carers shouldn’t be caring for someone in the same way as an adult carer, some jobs just aren’t appropriate. Read this blog about caring, an interview with an adult carer. It’s vital that they don’t spend too much time as this can affect their achievement at school and keep them from normal childhood activities, isolating them.

What Rights Are There For Young Carers UK

Young Carers Action Day raises awareness and calls for action to increase support for young people with caring responsibilities. The recent 2022 action day put focus is on reducing isolation for young and young adult carers including access to short breaks from home and school. Read more here.
Young Carers UK

When good practice is in place, Young carers have access to essential freedom from caring responsibilities. This supports what are Young carers education, training, work and leisure opportunities for a better future.

These actions are important support for young carers uk. When good practice is in place, Young carers have access to essential freedom from caring responsibilities. This supports what are Young carers education, training, work and leisure opportunities for a better future.

““A young carer’s assessment can determine whether it’s appropriate for you to care for someone else, and takes into account whether you want to be a carer.””

— NHS

A whole family approach is expected practice and considers how care needs impact all affected, carer or not. It places an emphasis on the young carer’s views and identifies the required support so they know they can reach their full potential and thrive!

What Support Is Available For Young Carers

Young carers need to know someone is looking out for them so there are vital services that help young people balance caring with being a child or young adult. This can be achieved by providing regular breaks and fun activities with other carers and even as a family.

These organisations help young carers acknowledge their parent’s or other family member’s illness or condition and are supported so that they can achieve like their peers. They are taught how to cope, build positive relationships, avoid isolation and plan for their future.

One enterprise is the ME-WE project aiming to strengthen 15-17 year old Carers’ resilience as they become adults. The goal is to impact positively on their mental health and well-being and ease the negative influence of social and environmental factors in their lives.

What are Young carers, able to access as support is wide ranging. The support offers information, advice and practical support. I’ve listed links to many of these at the end of this blog, including pages that have invaluable information themselves.

My Children’s Views On Caring For Me

What are young carers’ views? This has become a crucial question in working with the whole family in UK formal assessments. I think all families caring for someone should ask this question every day. Being open and honest builds family connection and empathy

Children have a unique insight into what happens in their family but it’s hard to know when and how to talk about so much around chronic illnesses. Hearing my boys talk about crisis times when they were so young has shown me how seeing my pain must have affected them.

Do I wish they hadn’t had to go on this journey, watching their mum in debilitating pain, crying as I crawled up the stairs each night? Do I wish they could have had opportunities I couldn’t offer? Not anymore. I now see the positive results from their experiences as carers.

What are young carers able to benefit from that their peers can’t?

As a family we’ve developed trust and transparency in every facet of our lives. The boys will be able to cope with any obstacles they’ll face and I’m always here to help them focus on the vision for their futures.

The strategies we’ve developed over time have been shaped by family therapy and my research. But it takes time and effort to get to a point where your child can speak frankly about their experiences.

18 Surprising Truths:

What Are Young Carers Life Opportunities

Young Carer’s Opportunities

Families living with chronic illness come across many obstacles so develop new ways of working when a parent or sibling becomes ill. The complexity of each family’s situation is unique but I believe every family can have joyful moments.
My Eldest son turned 18 last month, so here are 18 truths based on anecdotal evidence in the chronic illness community and my boys’ views as young carers. The quotes are from my interview with my boys and are cited here as E for Eldest and Y for Youngest.

Young Carers are statistically likely to achieve less academically and we know they’re affected emotionally. However families of any size or make-up, that use caregiver support and focus on joyful moments, can guide young carers towards a future full of opportunities.

Negative acts consume our innermost thoughts and are a part of life, especially when living with pain, illness or disability. If we zoom in on the positives we create balance but we learn from both. Making time to reflect on both and set goals is one of our regular family activities.

As a parent being cared for, teaching my boys core life skills has been rewarding for me. I believe that effective communication and problem solving are key for a young person’s vision for the future. These truths show the positive impact caring can have.
1. Teamwork – share chores to support the main adult carer and recognise your contribution. Develop a culture of gratitude and appreciation, where everyone feels listened to.
2. Connections – Prioritise and enjoy time with loved ones, making the most of every day. Create feel-good moments, joy and laughter for the whole family.
3. Communication – establish honesty so you can really listen to and work with each other to avoid conflict. “To talk about it openly to both Mum and Dad has helped my wellbeing.” (E)
4. Empathy – Encourage others by being caring, supportive, kind and compassionate. Be aware of other’s pain and know you can help them.
5. Resilience – the ability to recover from setbacks and cope with difficult conditions. Young carers become very capable at coping with experiences that most young people wouldn’t.
6. Boundaries – know your limits and what behaviour you will accept. Know when to ask for help and what your roles are. “I was confident in Daddy’s ability to look after Mummy.” (Y)
7. Self awareness – know the skills you have and the tools you need to help you cope in any situation. Know what triggers negative responses so you can switch to positive self-talk.
8. Make connections – recognise behaviour patterns to pre-empt when to step in and offer more support. Be aware of accessibility by assessing adaptations, how noisy it is etc.
9. Self control – regulate your emotions and choose what you want to happen and where to be. Learn to stand up for yourself and how to remain calm when angry or anxious etc.
10. Problem solving – make informed decisions alone or together and see it’s okay to make mistakes. Identify how to help someone who’s scared, confused, worried or panicking.
11. Perspective – appreciate others by learning not to judge and think how someone feels in any situation. “We’re more aware of other’s differences so we don’t discriminate.” (Y)
12. Socialising- make time to see friends so you have a break from caring. Know who to talk to about different situations.
13. Self esteem – know your worth, be proud of your achievements and recognise your value. “I’m proud of how I deal with Mummy’s illness and how mature I am.” (Y)
14. Critical thinking – learn new skills and how to use them. Think creatively about your response to new or difficult situations.
15. Focus – know routines, feel secure and be willing to learn new things to understand the world around you. Learn to handle distractions so you can thrive.
16. Adaptability – learn to cope when plans change “We go and see Mummy if she’s too ill to come downstairs.” (Y)
17. Self reflection – think about the choices you made and how you responded to situations – “I have to be more responsible. I can’t just sit back, I have to help.” (E)
18. Goal setting – use self reflection to recognise the skills you want to develop. Consider the steps you need to take, the help you’ll need and have a timeframe. Choose a reward, it doesn’t have to cost anything e.g. do something new.
In conclusion…

All children caring for a relative face restricted lives and most will suffer academically. The difficulties one family faces will be vastly different to another, so I’ve used anecdotes to represent this. I’m mostly sharing my boys’ personal narrative and our family’s truth.

We’ve always included the boy’s feelings and viewpoints in decisions we’ve made about living with chronic illness. As they’ve grown older they’ve expressed themselves clearly due to the strategies we put in place. Working as a team, we remove isolation as we follow our path.

As a family we continue to reflect and adapt as we reinforce positives and learn from the negatives. It’s vital for anyone living with someone who needs care, to listen to each other and be patient. In time you’ll see your children grow around the idea of pain, illness or disability.
““The two things you absolutely need to be a carer are compassion and a sense of humour.”
”

— Sam – My paid carer

All children want to help so if you live with someone needing care they will support them. It’s essential that they feel appreciated and part of the team. Your family deserves the positive impact of caring so utilise the help that’s out there for your child’s life opportunities, like these.

Visit Carers Trust here.

Visit Carers UK here.

Visit Action For Children here.

Visit Young Minds here.

And please help raise awareness on Young Carers Action Day on the 16th March 2022. See the resources here.

Because mental and emotional well-being are crucial to a young carers success, I want to share this free wellness planner I’ve created to help you prioritise for better life balance too. This is also a taster of the the Thrive Not Just Survive Journal, for mums with invisible illnesses coming out soon. Simply click on this link to sign up for your free copy. Please feel free to ask me any questions you have about using this resource.

✋ Hey there! I hope you’re feeling stronger now. If so, sharing the love will help me help other mums with chronic invisible illnesses.⬇ Hit one of those sharing buttons or save these images to Pinterest and I will do a bed-bound happy dance – there’s an image for you!

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15/03/2022
What To Accept After Years Of Intracranial Hypertension Treatment
What I Need To Accept After Years Of Rare Intracranial Hypertension Treatment

Rare Disease Day 2022 is always on the 28th February, so at this time of year I tend to reflect on the treatment I’ve had for the rare brain disease I have – Idiopathic Intracranial Hypertension (IIH).

I’ve been treated by a specialist team in Cambridge for the past 7 years. They’ve developed rare treatment plans for patients, who like me, often present with atypical IIH symptoms. Sadly, the treatment options they’ve developed have been exhausted in my case.

I spoke to my neuroradiologist about this last month and he asked about the results following my first procedure, so I re-read my notes and the hopeful blog I’d written back then. I now have to accept that my symptoms haven’t resolved as I’d hoped and this blog could help.

The surgical team has established unorthodox medical care that most neurologists consider controversial. This affected the support I received, so I had to learn to advocate for the care I wanted. Medical journals now publish more on these treatments, giving me hope.

In this blog I’m going to look at:
- My Background Story Of Idiopathic Intracranial Hypertension
- What I Wrote About How I Felt After This Procedure
- The Results Of My Following Treatments
- What I Am Feeling After Completing My Treatment Plan
My Background Story Of Idiopathic Intracranial Hypertension

In January 2014 I became ill and was diagnosed with chronic migraine, but after years of migraines I had doubts. I grew aware of a symptom I’d never experienced before, a whooshing in my ears. I researched Pulsatile Tinnitus (PT) and my family doctor confirmed it.

I found an ENT surgeon who specialises in PT and he believed I had IIH. But my symptoms don’t fit typical diagnosis factors, so with the support of my wonderful family doctor, I had to advocate for 18 months to get their Intracranial Hypertension treatment.

IIH, it’s symptoms and my full story are detailed on this blog. My main symptom is constant head and facial pain that’s mostly right sided and mobility issues due to imbalance. I also have brain fog, nausea, photophobia (light sensitivity) and PT.

In October 2014, my IIH diagnosis was confirmed with a lumbar puncture and a CT venogram (scan with dye). This showed narrowed veins at the skull base and venous sinus stenosis, where the large vein in the brain is narrowed. This causes fluid build up in the head.

IIH is a rare disease that affects 1-3 in 100,000 people. My scans identified Transverse Venous Stenosis causing constricted outflow in the veins at the back of my skull. This and the lack of papilledema puts me in the group of 6% of all IIH patients with this presentation.

Their Idiopathic Intracranial Hypertension treatment is controversial with most neurologists. IIH is usually accompanied by Papilledema, which if left untreated can lead to loss of vision. The pressure reading from a lumbar puncture is usually very high, mine wasn’t.

When I’d mention the Cambridge team or IIH, my local neurologists turned me away. I found one who would see me, but she still didn’t agree with the team’s radical surgical plan to remove some bone to improve venous outflow in my neck (see below for details).

This sounds outrageous but my pain and standard of living was so debilitating that I’d try anything for relief. The plan was brain and spine surgeries and stenting the narrowed vein in my brain. This article explains the link between venous sinus stenosis, PT and IIH.

Reflecting On The First Procedure Of My Treatment Plan

After a very long year of waiting, the team’s neuroradiologist was able to perform my first Intracranial Hypertension treatment. I had a cerebral angiogram and venoplasty as an outpatient procedure to see if surgery to expand a narrowed vein would be beneficial.

They thread a catheter up to the blood vessels in the neck that supply the brain, imaging and measuring the pressure inside my veins. Then they inflate a balloon in the vein (venoplasty) to monitor how it responds to decompression over a week.

I noticed a difference immediately and by the time I went back to the ward I was a different person to the one admitted that morning. I had lower pain levels, no nausea and a clearer head. The difference was visible and as I chatted, Joel, my husband, said “you’re Laura again”.

The improvement continued over the following days. I was able to walk the stairs, which I hadn’t done for 12 months, I didn’t need any oramorph, which I’d been taking 2 or 3 times a day and I reduced my other pain killers temporarily.

My PT and nausea returned first and a week later I woke up in my usual state of brain fog and pain. My surgeon was pleased with the results of the venoplasty. Although temporary they clearly showed I had restricted venous outflow and that surgery should be beneficial.

What I Wrote About How I Felt After This Procedure

I’d been told not to be disheartened if the symptoms reappeared the following week but it was frustrating to return to debilitating pain. However, I was pleased that this proved I didn’t just have chronic migraine.

At the time I wrote “I am… pretending I’m ok, feeling bad for moaning about hurting, crying and letting people down and not being able to do things with my family… [as] the pressure [builds again].

[I’m] missing out on… living life… trying to explain why everything takes so long and feeling worthless… knowing that the freedom of mobility is drifting away. [I’m] crying and waiting for that time bomb of pain to build so much that [I] can’t take anymore.

I have meditated, eaten, napped and had a few pep talks from friends and my husband… There have been tears today but I’ve been reminded that I [will] see my amazing boys grow up… with my best friend [Joel] of 18 years.

I have hope that there might be light at the end of this very, very long tunnel… I have amazing friends and family that are always there… even though I feel I’ve let [them] down by only being better for a few days… [when] I was so tired I just slept!

I am back making jewellery… reminding myself that I CAN still do things that matter despite feeling like I’ve been run over by a truck after drinking… whiskey.” My true friends have stuck by me and Joel still gives me pep talks. He and the boys keep me going each day.

The Results Of My Following Treatments

It wouldn’t be a complete reflection if I didn’t share the Idiopathic Intracranial Hypertension Treatment I’ve had since that first procedure. This blog has been more emotional than I thought because it’s shown me how poorly I was at the start of this journey.

I’ve had venoplasty procedures and many CT venograms. These show how the jugular vein passes through a small space between two bony structures, the styloid process and lateral mass of the C1 cervical spine. In my case the jugular vein is narrowed and flattened.

The anatomy of these areas are shown in these images.
This is my IIH story outline of the surgeries I’ve had:
1. Styloidectomy – removal of a small bone fragment that sticks out of the skull, behind the ear.
2. Stenting on the right side of the transverse venous sinus.
3. C1 mass removal of the right transverse process.
4. Re-stenting the right transverse sinus due to a compromised stent.
5. C1 mass removal of the left transverse process.
6. Stenting on the right side of the transverse venous sinus.
With each surgery I’ve seen some improvement, most notably my cognitive ability. My final surgery, in 2019, has had the most impact. My balance improved significantly and a month on, I managed a day out with my family, using a wheelchair, for the first time since 2014.
I’ve hoped for a life without constant pain since 2014. My symptoms improved with each surgery. Sadly I still suffer daily but there are positives from my treatment, mostly being able to be a good mum & wife.
What I Am Feeling After Completing My Treatment Plan

It’s been emotionally challenging reliving my IIH patient stories again. There’s been many tears as I think back to the hope I had for this treatment, a normal life off of the merry-go-round of constant pain. I’d naively counted on my surgeons to fix me, so the reality is crushing.

When the first venoplasty procedure had clear results, confirming I’d benefit from venous stenting surgery, I felt optimistic. Every surgery improved my condition but I’d gradually worsen each time.

Reading a blog from the start of this journey shows how challenging communication was for me. I’d be stuck there without surgery which would have broken my family. As I complete my treatment, the harsh facts are that I suffer daily but I am able to be a good mum and wife

This 2012 US case study states that “Intracranial venous hypertension may result from… compression of the jugular veins at the skull base. Although rare… [it’s ] important to recognize [this] because stenting…may actually exacerbate the outflow obstruction.“

My surgeon stated this could happen with stenting. He described it as removing a blockage at the top of a hose pipe, when it’s squashed lower down. The water builds up, leading to increased pressure.

My scans still show narrowed veins at the skull base but I’ve had all bone surgeries recognised for treating IIH. My surgeon can only see one possible surgery to relieve pressure here but it isn’t seen as a viable treatment for IIH. I’m frustrated by having to forget this option.

All involved are disappointed about completing this treatment plan without the success we’d hoped for. But PT took me down this path, and I’d hoped that this symptom would be resolved. As this is mostly the case, then I can count this part of the treatment a success.

This has reminded me how my quality of life has improved because of my Idiopathic Intracranial Hypertension treatment plan. The positive outcomes are:
- The cognitive change I’ve experienced is quite dramatic.
- My mobility has improved so much I no longer fall.
- I can walk on one level of the house, without mobility aids.
- I don’t experience daily dizziness or vertigo
- My phonosensitivity is less invasive
Sadly, my head pain remains constant, despite initial improvement after surgery. My high pain levels are disruptive so I still spend much time in bed. It still takes days for me to recover from any activity, even going downstairs, which can feel oppressive. However, over time I’ve learnt how to priortise for better life balance.

I’ve created this free wellness planner to help you prioritise for better life balance too. This is also a taster of the the Thrive Not Just Survive Journal, for mums with invisible illnesses coming out soon. Simply click on this link to sign up for your free copy. Please feel free to ask me any questions you have about using this resource.

It’s been an exhausting journey but looking back I take the positives, such as my ability to build connections, from my treatment as I move forwards. My surgeon has suggested a doctor sympathetic to their work, who I’m working with on the next stage of my treatment plan.

It’s scary saying goodbye to familiar territory as I complete treatment in Cambridge. I’m reassured and hopeful after speaking to my new doctor, but I’m anxious and apprehensive about what I face ahead.

P.S. If you’re a skim reader, catch up here –

I’ve been reflecting on my unusual IIH or Intracranial Hypertension treatment. This rare brain disease causes debilitating pain, mobility problems, brain fog and more. I re-read a hopeful blog I’d written in 2015 after my first procedure, when my husband said “you’re Laura again” as soon as he saw me. As this treatment ends I accept my symptoms haven’t all resolved but there are positives I can take on into the next part of my journey.
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✋ Hey there! I hope you’re feeling stronger now. If so, sharing the love will help me help other mums with chronic invisible illnesses.⬇ Hit one of those sharing buttons or save these images to Pinterest and I will do a bed-bound happy dance – there’s an image for you!
01/03/2022
How To Challenge And Overcome Resistance To Change In Life
How To Challenge And Overcome Resistance To Change In Life
Life with chronic illness isn’t easy for anyone, especially a mum with anxiety. I lack control over my own life due to chronic migraine and my rare brain condition, IIH. This life has challenged my whole family but has motivated us to adapt. With hard work, emotional strength, patience and trusted support we’ve been able to change.

Knowing I have power over my thoughts and actions made me see how my mind can get stuck going over past events when I’m feeling low or depressed. I’d tell myself ‘I’m a burden’ or ‘It’s all in my head’, only confiding in my husband, Joel. However, dealing with so much at once tested us.

We needed to discuss our feelings with someone neutral so we’d have full support from each other and our loved ones moving forward. I knew effective change would take time and support so I swallowed my pride and asked for help. I’ve learnt to be present with my thoughts and that honest self-talk is vital to my ability to cope.

To challenge and overcome resistance to change I also needed to appreciate how my brain and body work together. By studying my patterns of behaviour in the past and present, I could plan for sustainable change. This has helped give me the mental strength to accept development and disarm any power this held over my self worth.

The four key ways I’ve developed my attitude towards positive change are:
- Accepting you can only control how you think and act
- Listening to the stories you tell yourself
- Knowing with whom to discuss how you feel
- Changing your behaviour patterns over time
As this covers 4 ways you can take practical action and improve your mental health, I recommend downloading my free journal prompts to support you in looking at behavioural patterns and developing self worth so that any and all changes you make are effective.
DOWNLOAD MY FREE JOURNAL PROMPTS

Accepting You Can Only Control How You Think And Act

Big changes in our lives impact our thoughts, and subsequently our mental health, because of what we are exposed to. Our minds are wired to respond to stress with primal instincts, as if facing physical threats. This can lead to strong reactions to emotions, such as my anxiety when adjusting to new situations.

When I became chronically ill my world changed from an active life to a confined one overnight. My world became my family, house and garden which was okay but as my health deteriorated further, my world became even smaller. At the time I wanted to run from it all. I talk in detail about my chronic illness journey in this blog.

I believed I was a burden to my family, especially to Joel, as I could no longer play the role I always had. I became depressed with little self worth, even wondering if my family would be better off without me. But I knew I had to fight to be the mother and wife my family needed, even if it was different.

I learnt how the brain and body responds to stress and that mine was trying to protect me from threat, which helped me manage stress. This article explains ways to can manage and reduce stress. I learnt that to overcome resistance to change my negative thinking, I had to take control. Only I had the power to make the changes I needed to live the best life I could.

Listening To The Stories You Tell Yourself

To do this I needed to unpack how my past experiences impacted my current thoughts. I exposed vulnerabilities in my relationship with chronic illnesses. Due to many absences from secondary school due to undiagnosed migraine, I’d been labelled a hypochondriac. Now I was struggling to believe my own pain was real.

I’d been diagnosed with atypical migraine after 20 years so I was stuck in a negative thought pattern whilst trying to get my IIH diagnosis. I’d buried embarrassment and regret more deeply with each misdiagnosis, convinced nobody believed me. I needed help to navigate my journey so found my life coach, Josie, to help me unpick it all.

“These truths may be uncomfortable, but they can be the basis of meaningful change. Figuring out your own story could take 20 minutes or 20 years. And you may not make one big transformation; maybe it’s a series of incremental changes. You just have to feel your way through.”

— Brené Brown

Being aware of this helps me reinforce my truth and grow stronger. My past has less control over my narrative and I have more power to overcome resistance to change. I may still take small steps forward but my self belief continues to grow.

Knowing With Whom To Discuss How You Feel

I’ve had to reshape my life from necessity which makes change a bigger challenge. My brain condition stole my ability to communicate well and many of my supposed close friends dropped out of my life. I felt guilty for letting others down and because my judgement was impaired, I didn’t know who to trust with how I felt.

However, my true friends showed themselves when they rallied to help and comfort me when I had my first treatments. Their loyalty gave me strength to set boundaries to protect myself from those who didn’t support me as I navigated this new life.

But I was still grieving my old life and needed reassurance that it was okay to feel angry, sad and lost. The four of us built our communication skills in family counselling so we could discuss our feelings whilst respecting each other. We built strong support systems with others who we trusted over time, which was crucial for each of us.

Having confidantes has helped us cope with every surgery I’ve had, each one giving me back more of my old self. We developed ways to discuss our feelings as a family and I grew to trust those who were there for me without doubts or conditions again. This helped me overcome resistance to change and be grateful for what I now have.

Changing Our Behaviour Patterns Over Time

It’s normal to resist change, we usually run from it but accepting we’re scared helps us embrace the inevitability of change. Exploring why past experiences made us feel this way, can help grow our ability to adapt. Change is most likely during our career, so this Forbes article shares 12 ways to successfully manage change in business.

Make it stand out

Whatever it is, the way you tell your story online can make all the difference.

I managed change in my role as lead teacher but I had no idea how much change I was capable of until my situation left me no choice. To embrace my new life, I looked at my emotional reactions to positive and negative changes in my past. This enabled me to transform feelings of blame and guilt into pride and self respect.

When trying to adapt established behaviours we need to set our intentions and know it will make a positive difference to our lives. Click here to read my blog about how I developed my ‘Growth Mindset’ for going through change. Our brains continue to develop throughout life, forming new connections through repetitive actions or habits.

As a worrier, my brain is wired to release dopamine to reinforce connections each time I worry. This feel-good chemical is released whether the action is good or bad, making it hard to stop worrying and difficult to overcome resistance to change.

However, when we recognise that changing our habits will bring a huge difference to our lives, we can use the same wiring. Creating new behaviour patterns also releases dopamine each time we repeat an action. Focusing on small steps forward leads to more success, so with willpower and time it becomes our default behaviour.

Serotonin is released to communicate our desire to change. I use journaling to reflect on daily progress with new habits and to celebrate my small wins. Each win releases these feel-good hormones and helps us establish positive change. If you’re interested in journaling to support your own growth and mental health, try my free prompts.

DOWNLOAD YOUR FREE JOURNAL PROMPTS

How To Overcome Resistance To Change By Being Strong

Everything in my life changed with my IIH and this has been difficult to accept because I have such little control over the situation. I’ve learnt to focus on changes I can control and now focus on making positive transformations despite my illnesses.

Despite getting through the darkest days, self-talk held me back, making it harder to overcome resistance to change. Brené Brown’s perspective on the stories we tell ourselves was a revelation for me and was critical in helping me adapt successfully.

Now I’m usually able to reject negative thoughts that could slow my progress as I understand the link between the brain and changing behaviour patterns. My recognition of the science behind this has helped me be better prepared for future developments. However, big life changes still have potential to upset my emotions.

“Whatever change you want to make, it will be easier to do if you find people who encourage and support you.”

— Laura McKee

The difference in my life nowadays has helped me learn when, who and how to talk about my feelings. Having boundaries has meant removing people from my life who hold me back and making room for those who genuinely encourage and support me.

I believe I’ll keep moving forward by accepting what I can control, promoting positive self-talk, having authentic support and recognising that change won’t happen quickly. These steps have given me the strength to persevere and push myself to overcome my resistance to change; even on the hardest days.

Stay safe,

Laura 💜

P.S. If you just want the main points…

When my world changed overnight, I had to embrace a life with chronic illnesses. So I set boundaries with myself and others so I had support to focus on what I could control. I learnt that my negative self-talk was making it harder for me to change. So I looked at my brain and behaviour patterns to adapt my habits for making sustainable change for a better life.

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If you find it hard to make changes to habits or struggle to cope with change, I can help you create small, achievable goals using my free well-being plan in my VIP resources area. This will help you develop your self-worth and stop doubting yourself.

Or if you want to wait for my upcoming ‘Thrive Not Survive Journal’, and be the first to know when it’s for sale, sign up to my Strong Mums mailing list here.

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✋ Hey there! I hope you’re feeling Able to Start Making changes to support your own and Your Families well-being. By sharing this Post You’ll help mums with mental health and/or chronic illnesses. ⬆️ Hit one of these sharing buttons for social media and I’ll do a bed-bound happy dance – there’s an image for you.
17/05/2021