Today I bit the bullet and ordered my wheel chair! It was quite a milestone for us, as we felt that by buying my own we would be “giving in”!! In theory I should have an electric wheelchair because my shoulders and hands aren’t healthy enough to push myself. But we live in an area where almost nowhere is wheelchair friendly, and so I won’t be able to use it most places anyway. I can still walk … well, limp and hobble … short distances, but I need to rest a LOT and I can’t stand for more than a moment. So in my own home I don’t use the crutches or a wheelchair because I can stop at a moment’s notice and sit myself down. I know what over doing it looks like (and often go too far but that is another story) … but the point being that in my own home (or someone else’s) where I can sit when ever I need to, put my feet up (which makes a HUGE difference) … and by up I mean a couch or bed or ottoman right against the couch, (I used to try and put my feet up some times on another chair but could never work out why my legs would kill me afterwards for about a week, and now I know that it is because if there is nothing actually under my knees, the normal weight of legs with something holding them up each end, means that my knees just get lower and lower in the middle and totally overextend and stretch everything!!) so in my or a friend’s home where everyone knows me and is non threatening to my condition, I can look, and BE pretty normal!! Which is a huge blessing to me and helping me get through this!
But whenever I leave the home, I need my crutches. You don’t realise how often you stand (walking is easier because it keeps things moving and weight balance constantly changing, but standing puts pressure on one spot), and how slow it is to limp/walk. So I need the crutches for more than a few meters of walking, and for spreading the weight and pressure when I stand (which even then I can only do for short periods of time). But the reality is, that I can only walk even on those for no longer than about 20-30 minutes, and I am frustratingly slow for those around me! … which makes going for a walk with people impossible, shopping for anything other than a quick shop impossible, and craziest of all, I can’t carry anything and crutch at the same time! Where as in a wheel chair, I can be as fast as whoever is pushing me, can go as far as they are prepared to go, and can last the distance, ANY distance (in time as well as length!!).
So it was enormously helpful to get some encouragement this week from others who don’t use their wheelchair full time that it isn’t giving in, and also some advice from someone shared that when they needed one for a short time it made their lives SOOO much easier, and that they thought of it more as a golf cart than a wheelchair! That was SUCH a good idea, this wheelchair is not making my health go down hill faster, it is preserving what I have so that I can walk and crutch for much longer, and I can just use it when I need it. It is a long term investment! … a golf cart for living rather than golf!
I still have a long way to go in finding where I belong in all this! It was yet another blow for me to be watching all the reviews and videos and getting advice from people about which wheelchair to get, because the promotional stuff for non electric wheelchairs are mostly for people who can’t use their legs but can use their bodies from the waste up. I found myself in this VERY strange space of feeling envious of the “models” that I was watching zooming around in their wheel chairs, and not knowing why I felt strange and upset, until I realised that I was clenching my hands and folding in my arms while watching! I figured out that one thing about paraplegia is that usually the body is soooo badly affected below the injury, but not above it at all. So many of them are able to be sports men & women and attain a level of independence by strengthening their upper bodies to propel themselves, to lift their wheelchairs in and out of cars, and to do so much! Even the non “sporty” ones do an incredible amount of work in day to day life, getting themselves around! I take my hat off to them, and have a new appreciation for them and their strength! I do not want to diminish or make light of their situation AT ALL!! And I TOTALLY appreciate that I am totally spoilt that I can do SOOO much on my feet still! They might be “small” movements that I can do, but they impact life greatly! I don’t need a wheelchair that can fit into my bathroom or toilet, as I can still get up and go there on my own! I won’t even use my wheelchair inside my home for the foreseeable future … so why was I cringing my upper body and feeling envious?? I worked out that it is because my bottom half is “better off” than them, but my top off isn’t! I was grieving and feeling yuck and incomplete and fragile, about not even being able to lift my own wheelchair over my head into the car, or propel myself across a field, blah blah blah! It was bit life watching a sanitary pad advertisement of seeing sexy women riding horses along the beach in white flowing pants and feeling totally inadequate as I hug a hot water bottle to my bloated tummy and wonder why I am so pathetic! … I felt the fragility of my upper body and that I will never even be able to “do” wheelchair strongly!! It was another “no can do” box being ticked 😦
It was about clenching and protecting my hands and shoulders and elbows from the damage that I would do if I tried to do those things, and feeling envious of those people and their strength and all that they could do, but at the same time feeling guilty that I was feeling envious, because I am sure that some of them may feel envious of my different kinds of independence in my own home. They go home and don’t get to throw off their wheel chair and be “normal”, but I do!
Another thing that sold us on getting the wheelchair is that a week ago I went into the chemist to get my pain meds script filled and as I walked through the doors their tiles on the floor were so slippery that my crutches did the splits!!!! I didn’t land up face down on the floor because instinctively my shoulders pulled in fast and HARD to save me, which of course wrenched and sprained both shoulders!! A week later and I am still in AGONY!! And knowing from experience that I have an LFI in my left foot from a simple trip, these shoulders may not be getting better any time soon! It was a HUGE reminder that I need to preserve my shoulders as well as my feet!! Without strong shoulders I can’t crutch AT ALL!!! … and I already can’t walk far so if I can’t crutch, then I will be doing the wheelchair thing WAAAY more often. I already can’t walk through a supermarket, but if it is a quick shop, then I can crutch it for sure. Yes it is hard but life is hard and how many times do we all face “hard”one way or another while doing the grocery shopping … so it isn’t the end of the world, but if I can only crutch easily for twenty to thirty minutes tops now, it isn’t going to get much better, and when it gets worse, it will be wheel chair time!
So I am trying REALLY hard to heal my shoulders, so that I can hopefully avoid doing them in now too! And a wheelchair for the long hauls is part of that! Prevention is EVERYTHING right now, and the idea is to preserve my little bit of walking and crutching for as long as possible! … and being “brave” and crutching too fast or too far is NOT going to help me long term!
And I can’t remember if I have added any photos or my fabulous crutches! I can’t use “normal” crutches because they put all the pressure on hands and wrists which even when my left hand was completely undamaged from injury, they are not strong enough to carry weight on them without my wrists bending right back, and over extending… and so I have these fabulous crutches which are soooo much better on my body and use my forearm and shoulders to spread the weight around, but of course they look VERY different, and so you can see why people stare!!
I did have hideous crutches for three months that looked like something out of a 1930s mental asylum, with turquoise “medical vinyl” and velcro that stuck to my clothes and pulled and damaged them! They were all metal and top heavy and clunky… how it is that we even have such stuff as the “norm” in this day and age? But thankfully once I realised that these were to be my constant companions for life, I NEEDED to get rid of them and find something better!!
The new ones were developed by a guy who is a motor cross rider and you can’t half tell!! Fabulous if you are that kind of guy, but not when you are a woman! So they are WAAAAY better than the medical asylum ones, but I need to work out how to get them slightly smaller for my little arms, and less sporty looking! I have a purple pair and a black pair, and I’m working on “doing them up” but I still want to do more :p
I haven’t seen the hand specialist for the hand splints, but crutches and wheelchair are enough to keep me busy adjusting to them!