I’d just like to share a success story.

I live with my partner, and because I have physical restrictions due to pain or bendiness he usually helps me with a lot of stuff (cooking, lifting.. etc.) This week he went away to visit his family, and I was left all alone!

Yes, I call him my partner. It’s because after being together 7 years “boyfriend” sounds a bit stupid.
We’re not married, and we’re not engaged because we can’t afford to get married yet,
and personally we’d rather get engaged when we could feasibly afford to get married.

Yes, occasionally people assume he’s a she, and that I’m a lesbian because I say partner.
No, I don’t really care, it’s good for a laugh. 

Now, my sleep/living pattern has taken a hit (falling asleep at 6am and getting up at noon isn’t good. I blame the cold though, and the eerie quietness of the house.) And no I’ve not done nearly enough work… but I’ve not totally crippled myself, and I’ve even managed to do most of the houseworky things I normally get help with! Granted, I’ve split them into smaller tasks, and it’s taken a lot longer, but the point is, I bloody did it!!!

I did injure myself (pulled my ankle a bit, back spasm and rib popped out for the first time ever – if anyone knows, how long does it take to stop hurting?!) but I’ve not had to live on painkillers. I’ve not looked at a task and simply thought “Nope, can’t do that!” I’ve just had to actually get on with it.

So now, I’m going to go watch TV with a cuppa, and maybe treat myself to chocolate fudge cake and ice cream, because I’m proud of myself!

And the final one!

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No idea what this is called – (I call it a finger condom) It’s basically a stretchy finger-sock with silicone (or silicon?) gel on the inside which somehow magically relieves pain. No idea why it works, but it bloody does! Quickly too! This is what I use in place of ring-splints. I’ve searched and never found them with the silicon on only one side, which is why they’re ace – they don’t restrict the joints at all! The images show one partially turned inside out, and one on my right ring finger, which is where I experience the most pain (mouse usage, typing and writing I guess?).

Procool Wrist Support

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This is the second one I tried. It’s got a much more elaborate velcro arrangement, but it’s got more wrist mobility than the last one. I find it useful for typing and really great for writing. Wish I could comfortably wear it under marigolds so I could wash the dishes pain-free!
It looks more like a sport support so people ask fewer questions, and as my coats and jumpers are usually dark, it stands out less.
Again, the thumb has degenerated a bit, but that’s probably due to the pressure of writing.

Promedics Wrist Support

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In the leathery looking bit down the side, there’s a big bar of metal, bent specifically to my thumb shape by an NHS OT.
I wore these for lots of things last year, and they lasted remarkably well. The stitching on the thumb started to give way, presumably because of being inside lab gloves and rather sweaty, but they’re really comfortable and great for heavier work. They restrict the actual movement of the wrist quite a lot, so I didn’t use them for writing really. And the velcro rubbed on my hand under the pen.
Sadly, they’re not the prettiest thing ever, and they look like the kinda thing people wear when they break their wrists – so people ask a lot of questions, which I don’t like.

Metal finger splints from The Beautiful Splint Company

Metal finger splints from The Beautiful Splint Company

I have a chronically awkward pen grip.

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See? Awkward, eh? – The chunky pens help a lot, and I think they’re from W H Smiths… maybe?

My mum shouted at me for years making me have those triangle things on pens and pencils to try and make me write right. It never worked, and here’s why – my thumb dislocates, and my fingertips bend back (Not to quite the degree of the girl in the video though!)

I was sent to an occupational therapist a while ago, who has researched EDS and HMS a lot, and she offered me plastic splints, but we decided that because it’s not so much my fingers that suffer, and it’s more within my hands and thumbs, they’d not help much, and we went with thumb supports instead. This awesome OT also put me in touch with the HMSA who are a charity that organise support groups, information and advise for people diagnosed with HMS and their families, as well as sufferers of other connective tissue disorders. I went to one of their meetings and it was awesome to go

  • “Oh, your nails bend backwards too?”
  • “And you shed hair like crazy?”
  • “Wait a sec, do you fall over stuff that’s not there?”
  • “Do you walk in a wonky line as well?”
  • “So your friends think you’re unreliable as well? Me too! It sucks doesn’t it?!”

Anyway, back to the splints – It’s so nice that a company has put effort into creating a product that not only helps, but isn’t hideous too.

I wore neoprene velcro wrist supports for a while, and everyone I’d sit next to, or who would serve me in a shop would ask “Oh, how’d you injure your hands?” or more annoyingly “When will it get better?” There’s only so many times I can smile sweetly and say “Oh, I sprained it, it’ll be fine soon.” before the urge to yell “I was opening a can and got it wrong, and my thumb fell out – and it’ll never get better, so go away before I punch you in the face and dislocate my shoulder too!” becomes overwhelming. They’ve since been replaced, and I don’t get the urge to punch people so much anymore.

Physical supports are so often not used because they’re ugly, or highlight a physical problem more – these are beautifully crafted and seem exceptionally functional. This company wholeheartedly gets my praise!

(I’ll be uploading some photos to testify to the ugliness of supports after!)

Recommendations please!!

I’m on my own for a whole week, it’s snowing outside so I can’t really go out much (bendy problems suck!) so I’d like it if you lovely internet people could recommend a film or two to keep me occupied during the week. I’ve currently got on my list:

  • The Crow – I seem to remember watching this when I was a teen, but can’t remember much of it.
  • The Road – Working my way through Viggo Mortensen’s films and this one looks amazing.
  • I Sell the Dead – Seen it already – really funny and yet a bit creepy, definitely worth a re-watch. Dominic Monaghan is great as Arthur and the ending was quite unexpected.

Maybe I should have a fellowship weekend – watching a film by each of the members of the Lord of the Rings fellowship. I’d probably not have that much time spare though? Does give me an excuse to watch Equilibrium though.

I’m also hoping to finish Straken by Terry Brooks this week (Which is so cheap on Amazon, Cheap second hand books will ruin my finances!!). In Brooks’ books there tends to be a point by which you’re surprised nobody’s died… I’ve reached it and have been a bit terrified to read on. Got to though because then I can start on Gormenghast which was my Christmas present. I tried to read it years ago because I loved the BBC adaptation of it (It’s where I developed a slight Rhys-Meyers obsession I think)

And yes, I will do dissertation work – but if I exclusively look at statistics, my brain will melt.

For now though, I am going back to my warm double bed, with a cup of tea and some chocolate to listen to the final instalment of Neverwhere, which I have thoroughly enjoyed. Well done BBC!

Also – an explanation

The reason I’ve not updated my blog in a while is that I’ve actually had nothing to say. I’ve been working on my dissertation/projects at uni and I’ve not done an awful lot else really. It’s getting to the stage that I can’t actually carry all the stuff associated with my projects!! Due date’s in a month, so I’ll probably start updating more after that, but that doesn’t mean I’m not reading comments/questions and other people’s blogs.

Mobility Card

Apparently I’m not disabled enough to get a bus card. If I was in receipt of the higher rate of benefits, then I would be. I wanted the card to help my joints improve so I could work!!

Ah well, we’re back to the “If I didn’t” argument. If I didn’t do my physio, I’d definitely get the card. My back seizes up, I end up in too much pain to walk, my ankles sprain once a fortnight and my shoulders and hips dislocate. But I do my physio because I feel that my body is my responsibility. Similarly, I pay for my painkillers without complaining, am considering paying for Bowen sessions to help my joints, and will have to pay to go swimming as exercise to improve my joints. Now I’ll also have to pay for short bus trips to relieve the pain too.

I have sight problems too. My glasses can cost upwards of £180 per pair. They have to be thinned (TWICE!!) because the lenses are too heavy, so no optician will actually let me out the door without thinning (Believe me, I’ve tried!). As my eyesight gets worse with age, which it will (family history of cataracts), my glasses will become more and more expensive. If I chose to not pay for my glasses – I could probably be registered partially sighted, and then the council would have to give me benefits, and a bus card, and all that jazz… but I don’t. I wear my glasses because I feel it is my responsibility to be an independent person and give back to my society.

I feel like I’m being punished for working so hard to make my body better. It’s incredibly depressing that people who don’t work as hard are getting so much in return.

This is hugely depressing, but probably a symptom of the cuts being made in society. Those of us on the “disability border” get shafted by society and isolated even more.  Just because I don’t always whine about being in pain doesn’t mean that I’m not in pain. It just means that I’m not self-centred enough to whine about it. I think people have better things to do than listen to me talk about my pain – which is roughly the same day to day, and is utterly inevitable.

Just because I don’t have a massive stamp on my forehead saying “HEY, LOOK AT ME!! I’M A CRIPPLE!!!!” doesn’t mean that I’m not struggling.

This black-and-white system is doing a lot of damage, and I’m not just referring to the erosion of the cartilage in my hips.