Many people have said to me “You’re so strong, I just don’t know how you do it”, and then they go back to their own everyday lives and I carry on with mine.
Am I strong? Or am I just dealing with the hand that I was dealt?
When you’re living every day with symptoms that cause severe pain and severe lack of function you have to find the strength from somewhere to just keep battling through the days. The experience of living with a chronic condition is so completely and utterly relentless that it is all too easy to end up steamrollered into the ground.
So yes, I am strong, but it’s because I have to be. There’s no other way I can live with my condition. I cannot have a break from it. I cannot let up for even one day. It is a full-time and round-the-clock job trying to keep the balance between some level of function and terrifyingly severe levels of pain and autonomic distress.
Do I ever get used to it?
Yep, I do actually, but only in the sense that I can’t really remember what the experience of everyday life was like before I became chronically ill. This is my reality now.
But don’t make the mistake of thinking that means that everything is okey-dokey now. It’s just as hard as it ever was, it’s just as relentless and just as upsetting. But it’s one of those things in life where it doesn’t get ‘easier’ as such, I just developed new skills and ways of coping with it all. I’m good at dealing with the health stuff that I have come to terms with. But it’s a continuous balancing and re-balancing act because, as much as I’ve developed skills to cope, I have a progressive condition.. so just as I think I can just about handle this, another new deterioration occurs and I get knocked off kilter again.
So it is not a solid strength, it is a flexible strength. It has to be. I never know what’s around the next corner, but whatever it may be, however shocking or upsetting, I have to react as calmly as I can or my nervous systems will go haywire rendering me physically incapable and cognitively incompetent. Whereas, if I deploy my range of skills the moment trouble hits I then stand a chance of reducing the negative effects to some extent. I also have to employ skills in how to claw my body back to its usual levels of physical ineptness and my now standard levels of brainlessness.
Strength and weakness seem like fairly straight-forward terms, but they can be used in different ways.
For example, the first thing that I think of when I ask myself what my weakness is….. that I have a weakness for tea!
In more real terms I have a physical weakness because I cannot exercise like I used to (no aerobic exercise at all anymore, unless a fight-or-flight induced fast heart-rate making me come close to passing out counts?)! And my body doesn’t work the way it should in things like getting the oxygen to places it’s needed.
In emotional terms I am strong because I have to be, but if someone I had never thought would ever hurt me tells me that they think something bad of me then it’s not just the wonky fight or flight that’s the problem, it’s also the down to earth human emotional response as well. I guess that is simply a mixture of being neurologically compromised and of being human.
A big strength reducer can be when we lose people from our lives. Nearly all of the fellow patients I’ve met have problems with loved ones not understanding their condition, and when the neurological changes start kicking in before we are actually aware of what is going on.. that is one of the trickiest times for misunderstandings because they can pass over our heads like they never happened. And when we find out afterwards the shock is indescribable. We wished we’d known or realised or understood at the time, but we missed stuff. That’s all there is to it. But whole relationships can be lost over this transition period. And the loss itself can make us weaker, too. Not just the loss of colleagues, friends and even family, but also of a work life, a social life, and more besides. Our lives change so utterly that the change is hard to come to terms with. We have to fight harder to battle the grief of loss and, in the case of misunderstandings, lack of comprehension about what’s happened as well as all the rest of the usual everyday chronic illness stuff. At those times we tend to go under for a while. When I went under I resorted to discovering Magic Dude’s games console! Getting lost in a game was the only way I could distract my mind from the emotional distress and pain because the game continuously demanded my attention. Strength and weakness play their parts, and not all ‘weakness’ is bad or unusual. It’s all change and we work our way through it to come out of the other side.
With greater knowledge of our condition comes a type of strength, because it brings us more control in the sense that we don’t have to float about floundering as much any more. We can explain to our loved ones what’s happening and why we don’t always understand things, why our condition affects different parts of the body, why it’s neurologically based, and so on. We can source and print off research papers to help our doctors understand what we have learnt about our condition, (after all, we are learning about an area which is more specialist than they are used to). We can be advocates for our fellow patients, sharing our knowledge, sharing the sources of information, and understanding what we each are going through which reduces the isolation of the fight. And in reducing the sense of isolation, we feel stronger still.
But we are only human, we don’t have endless wells of strength to draw upon any more than anyone else has, but somehow we have to find a way to keep going.
So I use humour and general silliness! I laugh at the ridiculousness of the developments, even as I feel like crying. Sometimes I’ll be crying and yet also still laugh at the ridiculousness of it all. I take the mickey out of myself, I laugh at stuff on TV, at daft mis-marketing on adverts, at things that Magic Dude comes out with, and at him when he has a rant (he rarely does a serious rant, comedy rants are far more fun!), I come out with stupid comments to make him laugh too, and I’ve developed a bit of a skill in comedy rants myself. Then of course there’s the laughing when the tremors occasionally get so bad I miss my mouth, or scatter my coffee liberally across the floor. And when I come out with wrong words, mixed-up words and non-existent words. I laugh when I can easily find long and complicated words but can’t find a word for something really ordinary. I laughed at Magic Dude’s expression when he saw how orange the coat was that I wore for my CRPS Awareness physio’! (tee hee) And if I didn’t laugh I’d struggle a lot more. It’s the laughter that keeps me in touch with who I am without this disease, and how I was before it. It’s part of what makes me ‘me’, so I grab every opportunity I get. Laughter keeps me strong, it helps me to keep my perspective and to distance myself from troublesome things enough to keep on going.
I’ve said it before and I’ll say it again… tea and silliness rocks! 😉
Brilliant as always… I so wish I’d had this wonderful post to share with friends in the early years!
Excelleny article as usal….ans so true….yes loneliness….and crzazyness…the first one is the hard one to deal with….you have to become your “own best friend”…..the other other is a lot easier, easier tha sadness. xoxo
Great post! I have been fascinated by the different perspectives people have about strengths and weaknesses in relation to chronic pain/disability, they are just so variable. Personally, I think that coping because we have to is a strength, because there is another option, there’s the curl up in a ball and do nothing option (which most of us choose temporarily at some point). I think that not even considering “giving up” as an option is a kind of strength in itself. 🙂
Agreed. And many of us have experienced the curl up in a ball option during a time of sparse information and negative feedback or prognosis, and then decided that kicking CRPS’ arse is our preferred option! Rawr! 😉
Pingback: Recent (personal) disabilityish articles (NHBPM 24) | a Path Through the Valley
Sometimes I wonder if people say “ÿou must be strong” in order to excuse themselves from supporting us. But at the same time, I agree that we become strong because we have to. It’s an issue I come to again and again, especially when my gut response is “but I don’t want to be strong today.”
Thank you for sharing your experience. It is a wonderfully written work piece. xxx
Thanks Joni, xx