Living with a chronic disability/illness feels like a constant tug of war between resting so as not to damage it any further and pushing through so as not to let it ruin your life. The balancing act is not easy, and it’s hard to know how to get it right.
Often il push and push and push, determined to make the most of each day, defiant that I won’t stop me living a good life. Now a normal person when in pain or body feels exhausted might listen to their body and have a duvet day letting themselves heal. But when everyday you have pain and fatigue how do you know when to stop or when to push through?
Often there’s the fear as well that if you do stop, you won’t be able to start again. Personally I find deconditioning terrifying. I know my body is deconditioning, every year what I can do before symptoms ramp up, further decreases. Also as it deconditioning the more the symptoms increase; a vicious cycle it’s hard to know how to stop.
Also there’s the anxiety fuelled drive to do what I can now; because the realities are in the future I may no longer even be able to consider being able to do them. Conditions that I have such as ehlers danlos syndrome, fibromyalgia, ME and Postual tachycardia syndrome are hard to predict. Opinions on the life time realities of living with such conditions are contridictory and confusing. The truth I personally believe from seeing the lives of both family and friends with the same conditions is that they are progressive.
With age the more it impacts a persons health increases; for example at the moment at 28 my bladder is controlled with medicine but still spasms and replicates symptoms of a UTI, however seeing friends and family with EDS bladders I have mentally prepared myself by the time I’m in my 40s there’s a high chance it will have gone into permenant retention with the prospect of having to self catheterise Or a permenant catheter in place. Sure it might not happen, eds effects everyone differently. But realistically there’s a strong chance that is my future.
No one (able bodied or not) knows what is around the corner. But when living the a chronic disability everyday is a potential guessing game of what your body is going to do next.
Chronic disabilities are also invisible. Often this means that from looking at me you wouldn’t know anything was wrong at all. I laugh and smile and carry on because I’ve become stubborn not to let it spoil the life I have. I’ve long since stopped voicing every pain, because why make everything negative and people around you feel bad. I think I may have become so good at masking the pain and fatigue that those around me may believe it’s actually no longer part of my life. What people don’t realise is that unless it has become so agonising I’m at the point of tears or vomiting, I just smile and ignore it. Only very few people, such as my mum who is now my carer and so with me everyday, has learnt to see the fleeting grimace or body positioning to know the truth.
Why am I writing all this? It’s not to put everyone who reads it on a downer, but more to try and explain why I do what I do, and that just because I’m busy and doing stuff doesn’t mean I’m not in pain or exhausted. I may share the good times and happy memories on social media as it helps me feel good and positive about my life. What you don’t see is the hours spent crashed out on the sofa, the scales numbers increasing because we’ve had to send off for yet another takeaway because making anything to eat, even cereal is completely past me (sure that sounds nice, but trust me the novelty of takeaway quickly wears off). What I don’t share is the multiple times that my mum and The Man have to help me with what most people would see as basic everyday routines.
I share photos that I’m smiling and look fairly presentable, I don’t photograph the days I look like death warmed up, why would I? It’s not that those days don’t exist, but why would I want anyone to see me like that?
But today I wanted to be brave. I want to show the truth of what a flare/crash really looks like. The days when I’m too tiered to even get off the sofa and when it hurts so much every movement just makes it worse.
And this is me today, the times I don’t share even with my closest friends. The times where I flare so much every joint feels like it’s been attacked by hammers and set on fire. When I’m so exhausted I’m too tiered even to sit up straight.
But I am extremely lucky. I have an incredibly supportive family and husband that rally round to make sure I’m able to rest while they entertain the kids. Who never complain about the impact I’ve had on their lives, or the duties they now have to do to care for me and the household. They do so much that people are unaware of and I can never thank them enough.
So today is a write off day. A date between me and the TV. and while there’s 100 other things I want to be doing and which my mind spins with how I could do them, there is nothing I can do but rest.
But tomorrow is another day, and hopefully with rest it will mean that tomorrow or the day after that il be back at a level where I can carry on and push through.
I just need to learn to pace myself better and recognise when I need to listen to my body screaming no more. And so we come back round to the balancing act again; of when to rest and when to push through, I doubt il get it right any time soon, but hopefully with time I will get to learn and accept where my boundaries are, and let go of what I couldn’t and shouldn’t do.