Unfortunately, with a variable illness, it means that I can do things some days that I can’t others. As I get older, I get worse at mobilising. I used to be able to self-propel, I used to be able to lift kitchen equipment like the kettle, I used to be able to wash my hair every night. These things I just can’t manage anymore. Sometimes it’s difficult, especially for family members and friends that I’ve known for a while to understand that it’s not me being difficult, it’s me pushing my body to the absolute max. I could get away with the small differences, like showering and doing college work without anyone really noticing. Now I’m reliant on my wheelchair, I’ve never been met with so many obstacles- and not just physically.
For one, using a wheelchair is awkward. I can’t just drop everything at a moments notice and get into your car. I need to know when in advance so that I can plan it around my appointments and energy levels, and I have to know how my chair’s going to get there. This will be easier when I’ve learnt to drive my own Wheelchair Accessible Vehicle (WAV), but until then, I can’t afford taxis everywhere. The thing to remember if I seem uneasy is that I’m not trying to be a pain, I just can’t do what I used to. Trust me, I wish I could just drop everything at the drop of a hat!
Having these conditions makes doing things independently problematic. Wherever I am, I have my phone attached to me- whether this is the bathroom in my flat, the local shop or just on my own anywhere. This is because I’m terrified of falling or falling ill suddenly and not being able to get help. To most people, this is me being ridiculous. To me, this could be something that saves my life. Until you’ve been in that situation of an adrenal crisis where you’re fitting, or when you’re stuck in the bathroom because you’ve fallen, you can’t even begin to imagine how that instant panic feels that you’ll be stuck there forever. All my life, I’ve hated wearing a medical ID bracelet, but since I’ve moved away from home, I’m terrified to leave the flat without it. I’ve been wanting to go on holiday abroad now for a few months, and the last time I bought it up, my sister said “well why don’t you just go?”. Many a time since that conversation I’ve asked myself the same question. I’ve been as close as putting a holiday into the checkout online before I realise what a ridiculous idea it is. I live 45 minutes from home but still panic everyday. The other problem with having a variable condition is that you sometimes forget yourself what your abilities are.
You’ll always get people that tell you that it’s more about what you can do than what you can’t, success comes in cans and not cannot’s, your only limits are the ones you set yourself… I’ve heard it all before. The truth is, while they’re lovely sentiments and some people are able to take comfort from them, for the rest of us it’s utter bullshit. My limits are the ones that my body sets for me. Me reading inspirational quotes every morning while doing some sort of juice diet and Pilates is not going to suddenly allow me to get up and run a marathon. That’s just not how life works. In The Fault in Our Stars, John Green writes “The world is not a wish granting factory”. This is what I take comfort from. The world is a shitty place that sometimes deals us a shitty hand, but we have to make the most of what we have. Many a time I’ve been criticised by family members and medical staff for being too pessimistic. The truth is, I’m not pessimistic- I’m realistic. As someone who’s dealt with depression in the past, it’s only pushing me further back into that place if I insist that one day I’ll be magically cured, or that my life will stink so much of roses that you can barely breathe. Of course, if you take an optimistic outlook on your health, that’s also completely fine, you have to do what’s best for you!
I also can’t stand other people with chronic illnesses telling me what I should and shouldn’t be able to do. I understand this slightly from people with the same illnesses as me, but from people with something completely different? SOD OFF. If you’re diabetic but can manage to travel alone etc, good for you, honestly! But please don’t compare us. You may be at the same level as me, but our conditions are completely different. Even if they weren’t, these conditions manifest themselves differently depending on the person. Basically, what I’m trying to say is don’t judge me because you can’t do something I’m telling you I can’t.
The last thing I’m going to rant about is people’s opinions of my lifestyle. It’s no secret to anyone that I rely on my mum for a lot of things. However, this doesn’t give you the right to make speculation, or make jokes about this. What people forget is that I don’t enjoy having my mum doing these things for me- in fact, I hate that I have to. Especially since moving to university, I’ve had a lot of people comment on the fact that my mum collects and drops me backwards and forwards, does my washing for me and helps me to tidy and clean. This isn’t because I’m lazy, and it sure as hell isn’t because I make my mum do it for me. Mum collects me because I have no way of getting home unless I use a taxi (nobody can afford that every other week!) or public transport. There is a coach that goes directly from home to university, but this is not wheelchair accessible. There is another bus that takes me to the next town over, but due to a horrific experience the last time I used a bus I completely refuse to get on them now. Also, in case you needed anymore justification, I also pay my parents petrol (I work out the correct mileage) when they have to pick up/drop off. She does my washing because I can’t manage to lift my washing into the machines in the launderette here, and the cleaning because of sheer fatigue. So the next time you make a joke about my ‘poor mum’ and how I’m ‘taking her for a ride’, think again.
The vast majority of disabled people can’t stand help from others, so you bringing it up under circumstances that simply aren’t appropriate is plain disrespectful. So, the next time you tell a disabled person they’d be better off if they did X Y or Z, or judge them on their care needs, remember this blog post.