Coping With A Chronic Illness

Recently a friend asked me for tips on coping with a chronic illness. I compiled my thoughts and experiences of the last 19 years to share with you.

Mental Health and Wellbeing

People don’t understand, and this is a really hard one. But I suppose how can they, if they have not experienced something similar?

Especially when things are really tough, I think it is important to have at least one enjoyable thing you do every day (however small that may be). It can help keep you going and have something enjoyable to look forward to.

I acknowledge it is bl**dy hard. I think you need to acknowledge how hard it can be. You can’t pretend it isn’t. There is an element of grief and acceptance, this happens differently for everyone. But you are grieving for the life you don’t have anymore. It is often possible to embrace the new life you have; however I do acknowledge significantly harder if you are not well enough to do much at all. Especially when I look back, being bedbound in hospital in severe pain was hard to embrace as I had a very limited quality of life.

Counselling/Psychology

Counselling/ Psychology can help you deal with life changing circumstances, especially if you find someone you really connect with. I have not always had a great deal of success with this. My psychologists often asked: “What do you want to talk about?” Which I never found a helpful question as I didn’t know! I needed them to have a structured session to help me, or ask me questions and then I would talk about things. But this may be just me!

Hope and Support

Hope

Hope has always been a strong one for me. Hope has kept me going. (Hence Hannah’s Hope!) The hope that things will improve, that I will gain a quality of life. 

Following blogs, blogs, podcasts and social media accounts can help with providing helpful tips. Whether that is on access or things that have helped someone, holiday destinations or just not feeling like you are the only one. Check some out on Disabled Bloggers, Podcasts and Influncers to Follow.

For me, writing my blog has also helped me express my emotions and feelings. It has helped me to feel I am making a difference by helping others.

Faith

Faith has helped me to keep going when times are really tough. When I was in UCH as a teenager, I was confirmed in the hospital chapel whilst bedbound. I remember attending several services at the hospital chapel at my local hospital and seeing the chaplains at various hospitals over the years. I wasn’t particularly religious before but found my faith, in this time of struggle.

Goal Setting

Setting goals however small they may be and trying to achieve them has helped me in coping with a chronic illness. Initially, being able to tolerate five degrees head incline on my profiling bed (as I could only lay flat), to tolerating my leggings or trousers on my leg for 30 seconds, to the sense of achievement when I got my Maths GCSE, from writing it bedbound in hospital, with a scribe and being turned halfway through. More recently getting my first job of four hours a week and then building up my hours very slowly, to making breakfast with support of my PA to recently standing with crutches for a couple of minutes, heavily supported for the first time in 19 years.

Goals vary in size and at times have seemed never achievable. For example, thinking how will I ever be able to tolerate wearing trousers on my legs all day when I can only do 30 seconds, and building up by 10 seconds next time? But I did, it took a long time, months maybe a year but I did it. You will too. You may not feel it right now, but you will.

Many times, it wasn’t a forward projectory. Sometimes I remember just getting worse and worse, or feeling like there was no progress and would there ever be?

Looking Back

When I look back, although it has taken years, I have made large gains and now have a reasonable quality of life.

Initially, I was only able to travel by blue light ambulance. Now I can travel in my own wheelchair accessible vehicle (WAV). If you had told me that before, I would be able to travel reasonable distances in my WAV in x number of years, I wouldn’t have believed you.

Be kind to yourself. Sometimes things take time.

Family and Friends

Amazing support from family and friends. My Mum, Dad and brother, Ben were and are a lifeline. I don’t think I could have got through a lot of what I have without them.

Having a chronic illness shows you who your true friends are. I am lucky to have some very supportive friends.

I think it is important to have ‘well’ friends and friends with chronic illnesses. Often ‘well’ friends have known you a long time and have a special bond, however friends with chronic illnesses/disabilities ‘get it’ as they have often been through something similar. Whether something they have not achieved because of their chronic illness like going to university as an example. Or something they experience because of their disability e.g. extreme fatigue or exclusion.

‘Well’ or ‘non disabled’ friends can try their best, but sometimes it is hard to understand something you haven’t experienced.

Support groups online can be a great way to meet others who understand or are going through similar situations as you, especially if leaving the house is not possible.

What Has or Does Help Me with my Pain?

For me this is something I have struggled with a lot and know a lot of people struggle with coping with a chronic illness. I have tried so many things over the years.

Hot Water Bottles and Medication

For me hot water bottles help, particularly on my back. Medications such as opiates, non-steroid anti-inflammatory and some anti-depressants they use also for nerve pain have helped me. Changing position, and not staying in one position for too long helps making my pain any worse for example moving from my powerchair to bed, or turning from laying on my back to my side.

Massage

Massage can help with general aches and pains of being immobile, my back, arms and areas of my body that are not hypersensitive.

Swimming and Hydrotherapy

Swimming and hydrotherapy are something I greatly benefit from. It is a time I am free from my bed or wheelchair and once settle can get around independently. It enables me to exercise and stretch tight muscles as well as doing physio exercises that are not possible on land.

Physiotherapy

Although most of the time is extremely painful, it does help. To maintain and strengthen muscles and movement in joints to reduce further pain and reduced mobility.

Trying to keep moving as much as possible (although I appreciate a lot easier said than done) to try and maintain movement and muscles can really help.

Relaxation and Talking Books

Listening to music, waterfalls, waves and relaxing sounds. Or talking books, which some libraries rent for free online eg Borrowbox, you just need a library card.

Distraction

It drives me mad when medical professionals say about distraction (as it makes me feel they are saying your pain isn’t real) but trying to listen, watch or do something else can help a little as it can take you mind off the pain a little.

Oxygen therapy

I find this helps with my pain, fatigue and concentration. I am pretty sure it has also helped me get less infections.

Are there certain things that help you that are not listed? Add them below.

Hannah x