I know this is long. I apologise.
A lot of it will be more relevant from July when I have real internet again but I wanted to post it now. I’ve tagged people who I might see a lot, so for whom it’s most relevant. I am also looking for two people to do care over the summer in Farnham, if anyone has any ideas, and one more person for weekday evenings next academic year at Holloway. Contact me for more info.
I’m not going to go into diagnoses. I do have people who know and I do have people who don’t. It’s a complicated situation and I don’t feel the need to go into details about it here – if I want you to know I’ll tell you, but it makes far more sense for me to go into detail about what I can and can’t do generally, and then some more specific information around political friendships, uni friendships, primarily online friendships, and older friendships. I realise some people are all of these things. I want to do this not for attention but to avoid attention – so I don’t have to keep explaining myself because this is difficult – it’s difficult to think about and difficult to live. If you have questions for me then please feel free to ask here or message me.
I don’t want sympathy. I don’t need it, all it does is make me feel worse, so be practical and pragmatic please!
I have limited energy. I can borrow energy from the future, and seem more well for a week, barring the whole “unable to walk thing”, but that has repercussions. Some of you may know I was quite ill in hospital in February, and this was because of that. Every time I borrow too much energy and make myself ill, I find it harder to recover. Even managing normal daily tasks can be a challenge on a good day. I have care to help me shower, dress, cook, go out, shop, clean, do laundry, and in my final year I will be prioritising my degree, SURHUL, the ACA, and NCAFC (degree first) in the hope of going on to do a PGCE and work in language teaching, but there will be times when I can’t manage any of those. Nonetheless, they’re my priorities, and it’s important to identify that.
Please don’t try to pepper me with “positive thinking” and “medical advice” related stuff. I am trying to be positive about this, but for me part of that involves recognising my new limits, and being frank about them rather than pretending to myself that I’m more well than I am, then collapsing repeatedly. This isn’t some form of giving in, this is me being realistic because I want to have a life again. I want to have control over my life and myself and my health, and I need to be honest about that. People with similar symptoms or actual medical knowledge with advice is appreciated, but seriously, if you tell me to take a bloody multivitamin and I’ll be fine, I won’t be responsible for my actions.
Practical things you can do to help include
· Thinking about access when inviting me somewhere so that it’s clear what the barriers are, or knowing how I can access that information
· Offering me help with whatever you feel comfortable – cooking, changing, wheeling up hills, wheeling in general, carrying stuff – but also accepting no as an answer
· Being careful not to push the chair without checking with me first unless I’m incapable of responding – sometimes in difficult situations that can make it more, not less, dangerous
· Not patronising me – though there are people who know me well enough that if they say “go to bed” I’ll probably listen – in general I do, or should, know or get to know my own body and limits
· If you’re choosing a location for an event discussing it and access with me first, especially if it’s an event to which several wheelchair users might attend
· Not pressuring me or panicking if I am in a bad way, but offering to get me home / to a bed, and accepting my answer
· Accepting the fact that I deal with this by taking the piss to some extent, and not judging me for that
The most obvious thing that will change to most people is that I won’t be able to go to places that aren’t accessible, and I won’t be able to stay with friends without help. That doesn’t mean don’t invite me to stuff, but it does mean be aware that if we want to meet up, it needs to be somewhere I can get into, and that if I want to crash somewhere it needs to be somewhere accessible. Invite me anyway if you want be there, but me not coming isn’t because I don’t want to, if I don’t come it’s because I can’t.
Accessible means, for me, flat access or a small step I can get over in my wheelchair, it means I need to be able to get into a toilet or bathroom again in my chair. It means if the place isn’t adapted I might need someone to help me transfer to and from the toilet. It means if I’m sleeping I need somewhere a similar height to my wheelchair – a bed or sofa. It means if I want to get changed and I’m not with a carer I’ll need help getting changed. It means if I want to go long distances or up hills I’ll need pushing. That all sounds very demanding. I don’t expect people to want to or be able to do this, I realise a lot of friendships will change, but I’m being realistic. If I don’t have these things, it’ll be difficult or impossible. If I have time to plan I can sometimes manage to drag myself up stairs on my backside, for example, but this is a risk and a challenge and I need the time to plan for it.
I can’t express enough the importance of being careful with my limits. When I’m not I end up completely bedbound or even hospitalised.
Things that look like they’re going along this path are pretty clear signs that I’m close to overdoing it, and if I’m actually going to pass my final year, I need to have those sorted – I need to be able to control how much I do to prevent myself repeatedly getting ill.
If this happens I need to get home and rest. I need to be careful to get enough rest and sleep now, and I need to be very aware of what my limits really are.
Friends who communicate with me mainly online – this takes up energy as well. I can’t just relax and chat on facebook, when I’m ill that often consumes energy I really don’t have. This means friendships are becoming more distant. This means I may not reply – not because I don’t want to, but because other priorities are consuming my energy. This means I’d appreciate patience from friends, and people realising I’m distant because of my own needs and health, not because of how much or little I care about them. If you need to speak to me about something urgent, message me and make it clear it’s urgent and I’ll try to allocate energy to it. If not, I’ll read, and reply when I’m well enough.
Old friends – I’d appreciate as few as possible constant reminders. My life has changed very dramatically, and this is horrible, honestly. I don’t want to be reminded of how I used to be. I want to get on with how I am now. Sure it’d be amazing if I recovered but I’m not going to waste time hoping and pretending, I’m just going to fight to get used to where I’m at and live the best life I can. Please don’t expect me to be how I used to be and just let me come to terms with this. Please be aware of what’s changed when we’re making plans.
University friends – I’ll be living in halls – Williamson to be exact. This’ll mean I’ll have an accessible space. Within the rules of the accommodation I’ll probably do a lot of socialisation there and have friends there – I know a lot of people will be living in inaccessible places. If I don’t come over, or don’t come to the Happy Man, or whatever, it’s because I’m not able to, not because I don’t want to – I love the Man, but I can’t get to a toilet there, even if they unlock the gate so I can get to the beer garden. I’d appreciate it if friends were willing to hang out in my room in halls. I’m hoping to do some kind of cheap veggie / vegan meal every week or two, on a regular basis, so that I can hang out with friends, but I won’t be able to go out as much. I’ll need to be careful at medicine and the SU because flashing lights break my brain very badly, so I’ll have to plan medication and try and go on low/no flashing lights nights.
Political friends – politics is one of the most important things I have – it is my life. I will remain absolutely committed to it, but that commitment will have to change. Conferences and the like will be harder to get to and I will have to look after my health better, rest more, stay places that I’m well enough to stay, prioritise conferences within a short travelling distance, attend meetings by skype link more, be involved in email discussions more and offline ones yes. This doesn’t affect my commitment but it affects the way in which I’m able to commit. Hopefully my care situation will work out next year such that my carer is someone who would be at many of the same things anyway, but my presence will be something I’ll have to put effort into organising, moreso than other people.
I hate doing this, writing this, looking dramatic and like an attention seeker, but it’s out there now. Solidarity and people acknowledging they’ve seen it would be appreciated.