Wheelchairs, Seizures and Accidentally Angering Gorillas

Ready yourself for a slightly longer post than usual, I had a lot to say...

When you see me in the street, pootling along in Wilbur, my electric wheelchair, you might wonder to yourself “What’s wrong with her?” You might especially wonder this if you see me stand up, with help, and go into a shop (if it’s particularly tight, I can’t get around in the wheelchair.)

Disabled people are expected to be what others expect them to be… if you use a wheelchair, it’s expected that you’re paralysed and cannot walk at all. This is not always the case; there are many wheelchair users who may be able to stand for transfers, or walk a little way. Some may even be able to walk on their better days, but need to use a wheelchair for their worse days. Some may be temporary wheelchair users due to sickness or injury. Everyone has a story behind why they need to use a wheelchair, and each person’s story is as valid as another.

I want to tell you my story, in the light of what’s happened in the last few days. I've been really sick, and oddly, I write better when I'm really sick (in the patches when I'm well enough to write, that is.) I've been in the Local Accident and Emergency Department with an increased number of seizures, and last night the paramedics were called due to me having more seizures, which I didn't regain consciousness between, and which got longer and longer. After deciding that another trip to A&E would cause me to become more ill, the paramedics agreed that I should stay at home, with the people around me keeping a close eye on me. I slept solidly for a few hours, as is common after seizures, and then awoke to a night of torment. It is 6:42am as I'm writing this and I've been awake since around 2:00am in severe pain, with muscle spasms, nausea, dizziness, fever, night sweats; the works. Thankfully my friend David gets up around 6:00am for work, and therefore was able to give me some morphine not too long ago, which has made things a little more bearable.

The thing that’s flung me into this latest relapse? Simply that I just wanted to feel normal for once, I wanted to help out around the house, and I wanted to have fun. I didn't climb a mountain or host a disco, or even try to be completely normal (I still used Wilbur to help me get around,) but I just did a little more than spending each day in bed or on the sofa. I helped to cook dinner, to serve my friends, to look after my friend’s little boy Tom who is 4 ½ and absolutely adorable. Nothing big, but enough to wreak havoc on my body. I don’t know how long it’s going to take me to recover from this relapse, I don’t know if I'm going to be able to start college on Tuesday, or even at all. From a few simple days of trying to have a life again, my whole future hangs in the balance, and I'm scared.

My Gorilla is unpredictable, sometimes I don't even know what's made him angry. I never intend to anger him, but sometimes I have so much fun that I forget to accommodate him and this makes him angry. Sometimes his rage comes straight away, and other times he seems to bottle it up until he explodes into a terrible tantrum. He'll beat me and throw me across the room, he'll dance a jig on my back whilst I'm asleep, he'll trip me or push me to the ground, or shake me violently. The only way to placate him when he gets like this is to lie in bed with him and rest. He is like a petulant child who won't sleep unless you lie down with them, and then, just as you think he's dropped off and you start getting up to leave the room, he wakes up and demands you stay there with him. Even when I give in to him and go to bed, he will still find ways to hurt me, he might wrench my joints so they feel awkward and uncomfortable, or set my skin alight as I burn up into a fever. Perhaps he will sit on my legs until they become numb and partially paralysed, or maybe he will delight in using my head as a punch-bag until I'm sick. The fact of the matter is, if I ignore the Gorilla, he gets very angry indeed. Whereas daily Gorilla management by way of adequate rest, tends to mean he's less malicious for the most part. Gorilla taming tip of the day; don't pretend you don't have a Gorilla and ignore him.

It wasn't meant to be like this. By now I should be halfway through a degree, or training with the horses, or getting married. Every day I feel a sense of deep loss, of what this illness has bereft me of. I cry my heart out because I am heartbroken by my broken body, and I know that as a result of this, and other factors, I have a broken mind too. Depression and Anxiety lurk in the background, waiting for me to have a moment of weakness; wearing me down day by day. No matter how hard I try to ‘think positive’ or ‘just get on with it’ or ‘have more faith’ or man up’ or ‘push through it’ or ‘get better,’ things don’t change. And that’s not because I don’t want them to. I wish, with every fibre of my being, that I would recover from this, that I would get my life back, that I would be the person I've wanted to be, that I used to be. I am grieving my old life, my healthy life. The life where I could ride until sunset, study hard, read a book over a weekend, just do things that ‘most anyone my age could do.

But I can’t get hung up on what could have or should have been, on the ‘what if’s’ and ‘if only’s,’ because I have to deal with what I have in front of me. I have to make the best of the hand I've been dealt, and learn to do things differently. I've got to realise that although I want to do everything most 20 year old’s can, that I need to prioritise what’s most important, and schedule rest into my days. I have to tell myself that if I help around the house, but make myself so ill that I need help with everything for weeks, then I've actually created more work that I set out to help with. It’s going to be difficult because I'm a naturally intuitive and helpful person, and I'm so grateful for the people around me, that I just want to say thank you by helping them out, especially as I can always see when things need to be done, and I get agitated if I'm not able to do them. I feel like I'm being lazy, watching or even instructing others to work. It’s not in my nature to sit and do nothing, and so resting for me is incredibly difficult. I think I need to find a TV series that I can get the box set of, so that I can schedule rest for the amount of time an episode is. Obviously sometimes I'm so poorly that watching something is not restful, it’s actually an activity in itself that saps my energy, but I find it near on impossible to rest without anything to do at all, unless I'm asleep. I become restless and agitated, and I start thinking about all the things I should be doing, and begin to feel extremely guilty for resting when there’s work to be done. However, I need to learn to overcome this, as if I don’t listen to my body and rest, I become very ill, which creates more work for everyone in the long run. I guess I need to view resting as a helpful activity which contributes to the household’s well-being, as with proper rest, there should be fewer trips to A&E, less seizures etc.

I use a wheelchair because after a few steps, I am ready to collapse due to weakness, exhaustion, low blood pressure, dizziness, and pain. I know there are some people that will be thinking ‘the more you use the wheelchair the more you’ll need it,’ and I'm sure for some people, that is the case. Over-dependence on walking aids can result in a loss of muscle tone and fitness, which in turn can mean that a person needs to use these walking aids more and more. When I was bed-bound for 9 months, I completely lost my muscle tone and have never really fully regained it. However, I do as much as I can, when I can, to not be dependent on Wilbur. On very rare good days, I might be able to not use him for a simple trip done mostly by car. But on most days, walking more than a few steps at a time around the house will either be impossible due to collapse, or result in very harmful payback such as seizures and/or partial paralysis. It is plausible, that if I were to not use my wheelchair, that I would be able to survive. However, without him, even the simple things would become so very hard. I would probably spend much of my time being bed-bound, and if I used my limited energy just for the process of getting from A to B, once I got there I would be so ill, I wouldn't be able to do whatever I'm supposed to be, and may get stuck there as I wouldn't have the energy or strength to get back. So don’t look down on me because I use a wheelchair despite not being paralysed, wheelchair users are all different, and all have a different story. It’s not up to you, me, or anyone else to judge that person on their level of ‘need’ regarding their wheelchair. I know that 99% of people wouldn't choose to use a wheelchair, I certainly didn't, and the minute life without him becomes a feasible option, he’ll be gone faster than you can say ‘It’s a miracle.’

If you’re a wheelchair user, or use any other aid, and are subject to dirty looks, people making comments that you’re too young to need aids, or even judgement from other people who think their reason for needing something is more valid than yours, I understand. I've been through it and it’s horrible. When it’s strangers on the bus, you can perhaps brush it off as ignorance, but I know what really hurts is when the people you thought would understand the most, ridicule you because of their own hurts and insecurities. If you've experienced this, I just want to tell you that they’re wrong. I know that you’d never in a million years choose to be sick, or to need a wheelchair or other aid. They have no right to judge you unless they've lived your life, and even then they shouldn't judge you. We spoonies have enough people up against us without us lashing out at each other with judgement and harshness. There should never be any one-upping along the lines of ‘I'm sicker than you.’ It’s unhelpful, it’s childish, and it achieves nothing except making people look like muppets. We should support one another, and care about each other, send messages of love and encouragement rather than ones of spitefulness and hatred. And if you've been subjected to this kind of judgement and bullying from anyone, my heart goes out to you. If someone is going to treat you in that way, you don’t need that kind of negativity in your life, especially if you’re chronically ill. You don’t need to waste your spoons on people who think you’re a malingerer or a liar. Your experiences are valid, I love you and I believe you, hang on in there, you brave, strong little beans.

Alley-Cat xxx

© Alice Daley 2015