Living with Chronic Illness
This blog is about the ladies that support David in running Move For Wellness and their experiences living with chronic illness.
Jo had this to say about living with chronic illness:
I’ve never been a particularly healthy person – but prior but chronic illness I at least had strength and stamina on my side. So long as I kept an eye on my sugar levels, I could keep going with something physical all day. I was involved in Live Action Role Play which was five days of more exercise than I did the rest of the time. The recovery from which was 16 hours sleep and a few days of aches and pains.
Now there are so many things that could need that recovery, or worse – and it’s no longer a choice. Traveling a few hours, housework, going to the theatre – hell going out for a few hours a couple of times a week – now my body considers these things over doing it. It causes a lot of pain and fatigue, and sometimes you think you are doing well and that the recovery from something wasn’t so bad, and then it hits you again a few days later.
The hardest thing about chronic illness, for me, has been learning what my limits are – it’s caused a lot of frustration and upset over the years. It has taken me a while to admit that I am no longer able to do things that I once loved, I can’t LARP anymore, just setting up the camp would put me in bed for the rest of the event. I even worry how I am going to manage a relaxing holiday – because it requires travel.
Those limits don’t seem to be static either, I keep finding new things that are ‘overdoing it’. Like working on weekends so I’ve not had a full day off. Despite the fact I started my business because I could no longer manage the 9-5 and travelling to work, and I have a nap most days, I still need to take that weekend break.
It has had an impact on my mental health, at times when I couldn’t get out of bed, or I was in so much pain that using the scroll wheel on my mouth was agony. There are times when living like this feels overwhelming.
But for the rest of the time, I realise that I have made the changes that I need to, to make the most of the hand I have been delt. I still have huge aspirations; I just need to be more mindful of how I get to them.
Life can still be enjoyed with chronic illness – you just have to take more into consideration when making plans.
Kirsty had this to say about living with chronic illness:
When I was asked this question, I replied that I don’t have a chronic illness. Then I started thinking about it and soon realised that actually I have more than 1 chronic illness. So, I live with anxiety, depression, PTSD, nerve damage to knee, brittle asthma and bulging disc in lower back that’s pushing on my nerve.
Now being 28 and the mother to a 2-year-old I don’t let these things control my life. Every day is very different as you never know when you’re going to get a flare up as they normally just hit you without any prior warning.
I’ve been asthmatic all my life, so this has very little effect on day-to-day life except for when I meet people. Being brittle asthmatic means things like perfume, deodorant, cigarette smoke, pet hair and so much more can trigger me. Sometimes I don’t even know what has triggered me.
My knee is something I just live with, yes, I have pain in my knee, yes thing such as driving long distances (more than 30 minutes) or sitting can cause pain and discomfort but when you’ve lived with something for so long you forget what “normal” is.
However, my back really does affect me. Now those people who know me will often hear me say I’m in pain today but it’s very unusual for me to admit just how much pain I’m in. I don’t want people feeling sorry for me or asking if I’m okay because the truth is no I’m not. Most nights I get 4-5hrs sleep which is a good sleep for me due to the pain. This means I’m constantly feeling tired and drained, find it hard to think straight, without anything else. Then there is all the medication I take. Now I can either sit and be spaced out or sit in pain. Neither of which the results are great. How can you think clearly when your either on medication and lack of sleep or severe pain and lack of sleep.
I’ve had multiple people say you don’t look like you have a chronic illness. Please can someone tell me what a chronic illness looks life!
I often hear well maybe try exercising or dieting. I do as much exercise as my body allows which me and my consultant and pain management are very aware isn’t much however when you can’t sit for more than 30mins, stand for more than 20 mins, walk more than 30 meters, or climb a set of stairs without increased pain that brings tears how can I do anything else? Same as my diet, I’ve spoken to dieticians and they’ve agreed I have a balanced diet, I can’t do no more.
I’m one of these people that just puts a smile on and keeps going then suffers further later. I don’t want people judging me or feeling sorry for me. I just want to live my life to the best of my ability which some days isn’t very much!
Remember if someone is a little bit snappy, a bit emotional, over excited, very quiet or just not themselves they may be living with a chronic illness and just trying to get by each day. As a friend told me “it’s okay not to be okay. What isn’t okay is staying there.” Remember there are people around to help and support and always happy to lend an ear.
Claire creates all the merchandise for Move for Wellness which can be found on the shop!
Claire had this to say about living with chronic illness:
This weekend of going away to catch up with friends has really reminded me of the limitations that
come with living with chronic illness.
What in the past would have been travel on the day and go back the next day does not work! I have
to plan everything, so it’s now travel a day early and what I should have done this time so I could
rest is go back home a day later
Coming home and going straight back into the day to day of it is impossible, its about planning my
day out. Simple tasks such as sorting the washing, doing housework, changing the bed are incredibly
tiring and having to take rest afterwards feeling pained and tired (you’d think 6 years in I’d be a used
to it) but no I still get annoyed at myself for not being able to just keep going and doing things like
what is classed as normal
Naps have become an integral part of my life and as someone who was so active and never napped
it took a huge toll on my mental health
Imagine working that corporate career working 70+ hours a week all while managing a home and a
social life to now 40 mins of constant activity can floor me for day. It is pretty soul destroying and
can make us be so harsh on ourselves
Never feel bad for not being able to live life like you used to it’s about learning your limitations and
planning what you enjoy around them, having chronic illness doesn’t control your life that is still in
And remember be kind to yourself.
Karen looks after Move for Wellness’ Pinterest Account.
Karen had this to say about living with chronic illness:
The trouble with chronic illness is that “well person” logic goes out the window. We all know to get enough sleep, eat enough vitamins, exercise… but maybe you were doing that and you still got ill. Maybe you weren’t but you’re ill beyond what you should be. It’s comforting, when you’re well, to believe it’s all due to your actions, but that same logic says that anyone who is ill pretty much brings it on themselves. Yeah. There’s dumb luck and lots of things out of our control. I’m not saying there’s no point keeping healthy, but recognise any placebos that may not actually do what you think.
Chronic illness means making all of your goals that bit smaller. You have to think shorter term because doing just a little bit extra can have knock-on consequences. If you’ve never heard of PEM (post-exertion malaise) then look it up – I hadn’t heard of it until someone mentioned it on Twitter and suddenly it all made sense. After overdoing it (walking for 45 minutes after a day of work) I felt like I had the flu for four days and could only work and sleep. Fitness, beyond a bit of stretching so I don’t fully seize up, wasn’t a possibility. I’ve been doing a bit of chair yoga, which I thought was for people with far lower mobility than me.
But that’s another thing, I had to admit to myself all the things I just couldn’t do anymore. I cancelled my gym membership not through laziness but because I didn’t have the strength to do anything useful. I switched to bungee fitness instead – which is far lower impact. But that did highlight a lack of flexibility and strength. All the things I could do before… It’s upsetting when it creeps up on you and suddenly you’ve hit another backwards milestone.
So far, so depressing. But remember, don’t worry if you’re not doing everything that someone else is. Maybe they have more energy, more resources, more time. Be kind to yourself; things don’t always go to plan and pushing yourself may make things worse. And finally, being realistic isn’t being negative. It’s okay if there are things you can’t do – no one else can tell you if that’s the case so don’t doubt yourself. You know yourself better than anyone else. So celebrate the wins, acknowledge the changes and throws shoes at anyone who suggests magic cures.
Three of us recently attended a Christmas Party, and had to navigate all the planning that goes with that. Here we are shortly after a nap upon arrival!