Daily confidence
These are the things that I deal with day in and day out. They are the small things that on a daily basis affect me and make me struggle with acceptance the most. You try and blank out these ‘small’ things, but they amass to make a large impact on an individual's mental health.
There are lots of people out there who have daily struggles with something in their life which has a constant, daily impact on them. Where I think someone with a disability struggles somewhat more, is the knock on effect of having a condition that impacts you in so many different areas. Personally, I would say I struggle to go more than a waking hour before something impacts my confidence and feeling like I’m taking another step backwards.
Not everything is a massive deal and it can seem like a real trivial thing, which you could easily say, as I often do to myself, ‘oh it's nothing big, just get on with it’. It’s so easy, in isolation, to think that. However, when its impacting you day in and day out, multiple times a day, it's hard to not let it eventually just wear down on your ability to deflect the negative moments in your life.
It's the small things like, putting on shoes and socks, having to physically pick up my leg, or grab my trousers and drag it on top of my other leg, so that I can reach my foot to actually put on the sock. Ohr it can be an even ‘simpler’ task of rolling over in bed. My legs are so weak now that even the weight of the quilt on my legs is too much for me to be able to move them around independently. I’m sure you’ve all been in the situation where you just can't seem to get comfortable in bed. You keep rolling back and forth, side to side, adjusting your pillow, just trying to find the position you can lie in. Now imagine that, but feeling like you've got a bunch of house bricks on top of your quilt, and if you want to move your leg, you need to use your arms to physically move it in the bed. If I want to roll over in bed, I have to grab onto the headboard, and drag my body over. It doesn’t seem like a massive deal right. But when it's every single night you're having that battle, it really starts to wear you down.
I think the other major daily confidence blow is accessibility. Now, if you have been keeping up with the blogs you will know that I am having a very real battle with the council over making my own house accessible. So this doesn't even have to be an outside battle, when visiting places, although that's very real too. Only the other day, visiting the local snooker hall with my friends, I have to plan ahead, pretty much dehydrate myself, and make sure that I have been to the toilet before going out. Whilst there I make sure that I have only one drink, because I don't want to need the toilet while I’m there. All because the toilets are so inaccessible. Not only would I need to get friends to put the portable ramp down to get to the bathroom, once at the bathroom, the cubicles are all up a step, so that's a no go. Then there's the art of trying to stand at a urinal, on an often soaking wet floor, emptying my bladder and trying not to end up on my back, of all places, a gents bathroom floor.
I can’t remotely begin to go through the daily struggles. Wanting a drink but being too scared to ask because your partner does so much already for you. Wanting to see a different room, because your sitting there realising you haven’t moved for hours, because getting up off the sofa has to be a well thought out 180 degree twist, looking like i'm trying to wrestle an octopus, just to try and stand up straight. Or to get too and from our own bathroom, up and down a step into our utility. Through the narrow gap, between the fridge and the dryer. All of which is absolutely fine for someone who is able bodied.
I think the key point I wanted to get from this was, if you too are going through daily struggles, daily confidence blows. If you can take one thing from this, it is that you're not alone. For anyone who isn't going through something like this. Just remember, it's not always the major challenges that make living with a condition so unbearable. It's the small, simple, mundane tasks which are constant challenges. The fact that your every living moment is a struggle and a fight which makes living with something like this the most difficult thing. So often you hear people say, ‘you're dealing with it so well’, but until you’ve truly seen the daily struggles, you couldn’t even begin to imagine.
Be Kind.
Love,
Jonno.
P.S. My friend has took it upon himself to do some fundraising for me and my family in order to make my home more accessible, he’s challenging himself daily by doing 100 triathlons in 100 days, so please just take some time to go over and have a look at the amazing challenge he has set himself.
https://gofund.me/d869eced
