No, no but it’s not funny at the end of the day is it? It’s serious

A couple of weeks ago my TikTok for you page was full of videos using a sound where there’s a room full of laughter. And then someone says “no, no but it’s not funny at the end of the day is it? It’s serious.” I’ve been thinking about that a lot lately.

About ten days ago I had a bad experience with something disability related. The internet would have you believe that this bad experience is something that happens regularly. And I could easily believe that at least one disabled person in the UK will experience that everyday (I have no figures to back that up).

Personally I’ve experienced that before but not for many years. In the past I’ve ended up in a dangerous situation more than once because of it. I’ve had sobbing panic attacks before because of it. It’s only due to a quirk of when it happened that it ended up just being very stressful and worrying this time. That and the kindness of a couple of strangers.

I could write about what happened. I could tell you about the strangers running around trying to find help. The other people who were around who didn’t realise there was a problem. The joking comment one of the other staff made to the staff member who came to my rescue when it was all over.

But every single person I’ve told this story to has laughed. Apparently the way I tell it is funny.

And that’s infuriating. Because it was a stressful, upsetting and potentially dangerous situation. A situation I regularly have to risk finding myself in again.

A dream I remember

This was the Bloganuary prompt for 24th January.

I used to have a semi regular dream. It would never be identical but the same thing would be happening. I had it, probably several times a year, for as long as I can remember.

The dream would be that I’d be somewhere, doing something. That varied in each of the dreams. But I’d always be walking around doing whatever it was.

Then suddenly in the dream, I’d remember that I can’t walk. I’d them usually spend the rest of the dream crawling around in a panic looking for one wheelchair. Apart from once when I kept walking (I think this might have been when I was still a bit functional on my feet in the real world) but spent the rest of the dream in a panic that I’d fall before I either found my wheelchair or got where I was going as I knew I’d not get up if I did.

A few years ago I was talking to a friend and told her about the dream. She said “that’s a classic anxiety dream.” And I’ve never had that dream since.

I’ve had a little time to find the truth

(title is a line from the song A Little Time by The Beautiful South)

I’ve been thinking a lot lately about how much time simply being disabled takes.

Although there had always been the odd thing that took a long time or a lot of effort to sort out because of my disability it’s only really in the last year or so (since I started wearing compression and particularly since the carers started coming twice a day) that I really understood what people meant when they said being disabled takes a lot of time.

But suddenly I’m waiting twice a day for a carer to turn up. I get a rota but it frequently includes different times to the set one we agreed which can make it hard to plan. And it even more frequently gets changed and I don’t get told. Add in the fact that a standard across all care agencies is carers being allowed to come 15 minutes either side of the time without telling you and it all adds up to a lot of waiting. Anxiety too at times.

There’s the time waiting at the pharmacy and going back to point out they’ve got your compression prescription wrong but it’s so specialist they haven’t noticed (because apparently it’s too much to expect them to realise the prescription says you need medium and the packet says large).

There’s the time spent explaining (often again and again) that your disability means you can’t do that and what your access needs are. I once had to explain three times in one phone call that when I say I can’t stand unsupported I really, truly, 100% mean I can’t stand unsupported. They “checked with a colleague” and told me they would be able to do it with me sitting. I arrived, waited 45 minutes after my appt time and the first thing they said was “we don’t have adaptive equipment, you need to be able to stand”

Unravelling the bureaucracy of the NHS is a current bugbear of mine that is taking a huge amount of time. It’s been suggested I need something that most people could have done at the GP surgery. My wheelchair means I can’t. I’ve been referred to what appears to be the appropriate service, booked at appt (for February because what’s a three month wait?) only to get a letter three days later saying they’ve cancelled my referral and appt as I don’t meet the criteria. I should self refer to XYZ community service. Who when I emailed said “no, can’t do that for a wheelchair user.” So now I’m waiting again for a phone call with my GP (in two weeks) to probably be referred back to where she originally wanted me to go.

There’s the time spent trying to find out access information, then solve problems and/or find alternative places to go when you turn up and find out they told you what they thought you wanted to hear, or “forgot to mention the step” I refuse to ring places for access info any more. Email is more likely to land in front of the right person. And gives a paper trail when it goes wrong. But waiting for a reply takes even longer than ringing does.

A source of wasted time and frustration is all the phone calls. Listening to the recorded message on a so called “accessible tickets” phone line that takes ages to be answered and keeps suggesting “it’s quicker and easier to book online” when the first thing you see online is “please ring if you have access needs” Or having to book assisted travel on the phone because although you can book online the ramp never turns up when I do (because it turns out, the online booking gets emailed somewhere for someone to manually input on the system so when they’re busy it doesn’t get done. And they’re always busy)

The wheelchair replacement parts that take weeks and weeks to turn up. Often longer than you’ve been told. And they don’t tell you or the supplier about the delay. When you ask for an update you get told. With a shrug and a “that’s Sunrise for you”.

It’s no wonder that lately I feel like fitting everything in is a huge struggle and I just don’t have enough time is it?!