Strength Of Tears

Tag: Living With 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
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