baratron: (endurance)
Last night I spent about 3 hours filling in my Disabled Students' Allowance forms and wanted to die. There is nothing quite like detailing EVERY WAY in which you are medically broken to make you feel like a non-person.

I had to fill in three years' worth of forms in one go, because I need some funding for 2015/16 to cover 4 x sessions I had with my disability support mentor before deciding to go on a break in studies, as well as the current year (2016/17) and next year (2017/18), which made the whole experience extra tedious. Although virtually all the questions were the same, so I could copy and paste stuff.

The worst thing was that my name - "Helen-Louise" was too long to fit in the boxes of the older forms because apparently a first name should only have 10 characters in it?! I mean, what?

In other news I am slowly continuing to move people over from their old livejournal usernames to their new Dreamwidth usernames for access and subscription purposes. If you think you should be on my access list and are not currently (can you see this post?) feel free to leave me a comment here.
baratron: (willpower)
I'm sitting in Starbucks on Wardour Street waiting for Richard to get out of work. Someone's broken the only lift into his building so I can't wait there, and Westminster Council hates wheelchair users so much that I can't easily get around Soho by myself due to a severe shortage of dropped kerbs. So I didn't have a great deal of choice. I couldn't even get to Costa because it would have meant hurling myself off 4 inch high pavements and then driving along the road. I value my teeth a bit too much to risk that sort of thing.

I really need to organise some sort of petition/protest/shoot a video showing Westminster Council just how fucked up their access around Soho and Covent Garden really is. That would, however, require spoons, which are in short supply at the best of times.

I'm sure I owe you guys an "I got home from my travels safely" message, but I have been far too ill since I got back to manage anything. Nothing new, "just" severe period pain combined with my usual back/hip pain, the combination of which has required eating enough painkillers that I've been too sleepy for coherence. Joy! "Conveniently" I had an appointment at the Pain Management Clinic already booked for Monday. But it was hard to fill in the pain questionnaire when I'd been lying flat on my back groaning because of my uterus for days.

So after a week of doing absolutely bugger all, today I've got up & gone into London. Earlier it was sunny but not warm, now it is positively freezing. It was 30 deg C in Canada and I got irradiated by strong sunlight every day - here it is a maximum of 18 deg C in the middle of the day. Positively autumnal, and I miss my summer. Going out for dinner with Richard and his vegan colleague who is visiting from Canada. Richard has been unimpressed by the way his company has been treating this guy, e.g. yesterday they went out for steak even knowing that nowhere that serves decent steak in London also does vegan food at all.

I'm tired. Life could be a lot worse, though.
baratron: (cn tower)
Today has been an exercise in frustration. Booking accommodation while disabled is... difficult. I have to make sure that I can get in and out of the bathroom by myself without immediately forcing my new boyfriend into "carer" mode when he's never even met me in person.

We were looking at apartments on AirB&B and TripAdvisor… the problem is that all a person needs to do to make their flat “wheelchair accessible” is to tick a little box. So there were a whole load of apartments that I could apparently get around fine until it got to the bathroom. Whereupon there were suddenly no grab rails, a bathtub with no seat or dropped sides, and a fixed shower head rather than a detachable one.

The Download Festival is more accessible than most of these condos, and that's an outdoor music festival where you sleep in a tent! But at least it has grab rails in the toilets and enough space to transfer from a wheelchair if you can't walk at all, and roll-in showers with a seat and grab rails.

Also, the most frustrating thing on any website is the phrase “This hotel has accessible rooms that may include the following accessible features”. Just fuck off! I don't care about what you "may" provide, I want to know what you definitely "will" provide!

Grargh.

In other news, I have discovered that Electric Wheelchair Hockey is a thing. That's positively amazing - I hadn't known there were any sports accessible to users of electric wheelchairs before. Wow :)
baratron: (corrosive)
I do not recommend arthritis of the spine. I don't really recommend arthritis in general, but there's something about having it in your spine that's just extra evil.

I had some injections done in January which basically fixed the problem entirely for a few months. Over the past few weeks, I have become increasingly aware of it returning in force. Yesterday things were so bad that I had to miss a lecture that I wanted to go to, because I hurt too much to be able to sit through the class without having to wriggle and fidget and stand up and change position so frequently that it would disrupt everyone else. Normal painkillers do nothing for this type of pain.

Now I don't know what to do. I have been to my Pain Management F/Up appointment, which lasted all of 10 minutes because the specialist and I were in complete agreement that I needed another set of injections. But the Pain Management Clinic admin are completely useless and gods only know when that'll actually get scheduled. I could go back on gabapentin, but I'm afraid to lose my mood control. I've actually been feeling pretty cheery over the past month or so, still a person with depression and anxiety but with those issues mostly under control, and I'm extremely reluctant to give that up.

Then again, if I'm in this much pain and discomfort, I'm not going to be able to get my work finished off because I can't actually sit still for long enough. And my department have made it very clear that I'm not getting any more extensions.

This is the kind of juggling that you have to do if you have multiple chronic illnesses which interact. No one wants to be in constant pain, but no one wants to turn into a crazy person either. Better pain control vs worse mood control is not really a good equation.

I shall, of course, be consulting a medical professional at the earliest possible opportunity. I'm not really looking for advice, because none of you have my biochemistry, or are taking my particular mix of medication. But I certainly need *hugs* and comforting pats over the internet.
baratron: (london)
...and I don't have all afternoon to get from London Waterloo to Camden Town and back to Birkbeck for an evening class. So I am going to Take The Tube! Along a theoretically accessible route which I've done before... But you never know until you actually get there whether the lifts are going to be working, no matter how many times you check the Transport for London web site.

My train journey from Kingston to Waterloo doesn't rely on lifts. Going, I can drive myself up the ramp if I need to (it's steep, but do-able in an electric wheelchair). Coming back, I can always get off at Norbiton, which has a ramp. Journeys which absolutely depend on functioning lifts stress me out in a way that a person with healthy legs would have trouble understanding.

The worst thing is that at King's Cross, there are three separate lifts to bring you to the surface from the tube. Not three which work in parallel, but each one doing one floor. So it's up and along and up and along and up and out, therefore either tripling or cubing the amount of stress required.

Still, it's better than sitting in a traffic jam for gods know how long.
baratron: (flasks)
So, I've been wanting to get a Mirena coil fitted for a while. I like the permanence of my copper coil, but I don't like the way it aggravates my periods. I've always been extremely reluctant to use a hormonal method of contraception because I have extremely bad PMS (premenstrual dysphoric disorder) - indeed, whether I am officially bipolar or "just" have violent reactions to fluctuations in my hormone levels is something that neither I nor my medical professionals have ever worked out. But the Mirena delivers the hormones directly into one's uterus, and as a result may be much more suitable for women with severe PMS than the Pill. More importantly, it may also offer protection against endometrial cancer, which runs in my family.

I discussed the Mirena coil with my GP a few months ago, and she went through all the pros and cons with me then. But I have "a thing" about not liking my private parts to be seen by the same doctor who I see for everything else. Y'know? I like one doctor who sees me clothed and a different one who sees me naked. So for years I've been going to the only evening Family Planning Clinic in my local area. I like it because it runs from 6.30-8.30pm, meaning I can usually manage to get there, and the doctors they have there are actual gynaecologists, meaning that all they do is look at women's private parts and mine is therefore not very exciting.

So yesterday I finally acquired enough spoons to call the Clinic and I got asked a number of questions by the nurse. Cut-tagging this simply to avoid setting off work filters, not actually private at all. )

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