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. 

✋ 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!