Strength Of Tears

Tag: chronic migraine

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
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 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