Wednesday, 25 April 2012

Lots of firsts =]

Today I have done the following things for the first time :

- booked my practical driving test
- made my own 'baby' food
- bought a wobble cushion (to help with core stability)
- bought kinesio tape (for proprioception - don't worry bendies, I remembered to buy undertape as well)
- bought vega vegan / gluten free protein powdery stuff (as part of my more liquid diet - see previous post)
- bought nuun and high 5 zero electrolyte replacement fizzy tabs
- bought summer arthritis gloves (too hot for my winter ones)
- bought a book about POTS (the kind of dysautonomia I almost certainly have)

All of these things cost me money. All of them are only necessary either because of my impairment/s* or because I am disabled. Yes, some of it is stuff that in an ideal world a physio or OT would have given me, but we don't live in an ideal world. It takes a lot to persuade the NHS to give you something (e.g. a splint) and when they do it tends to be low quality (designed for short-term wear for an acute injury), ugly (beige - don't get me started on the racial privilege behind the term 'flesh coloured'), 'unprofessional' (for aforementioned reasons get scruffy and dirty quickly, uncomfortable (in a one-size-fits-none kind of a way e.g. cheap splints that don't adjust well enough to work with everyone's body), designed to be hidden (see beige) and therefore somewhat disablist (I would rather have a choice of colour to go with what I wear that isn't scruffy, dirty and ugly so that I could wear my splints without feeling the need to hide them. I am not ashamed of my bendy joints).

If you want something different - something designed for longterm use in the confidence that it will be replaced when necessary, something smart / pretty, something that fits properly so I can actually use it rather than it ending up in the splint graveyard - then it can take years, and complaints, and being a pain in the arse, and feeling like you are being done a favour. And even then you will be expected to compromise - price rules. If I buy things myself then I get to choose the design and colour, I get to look at the ethical practices of the company I'm buying from. I get to decide when it needs replacing, and when it's just not working. The only downside is not being able to try things out beforehand, but there are online reviews and return policies, and shops.

Let me give you an example. I needed lighter compression gloves (having bought the thicker ones myself) for the not-winter. My OT only had lycra ones (snags easily) in beige (gets grubby quickly) poorly made (seams started unravelling after 1 hour) with fingers (I need fingerless so I can you know write/type/crochet/eat). They were only useable when I cut the fingertips off and sewed them up, but even so I doubt they'll last a wash. I don't understand why there can't be a prescription like system when if something works you can get it again when the typical lifespan of the product has passed (e.g. yearly). Well, I do understand. The NHS does not always do chronic illness well. 'Health' and 'disability' equipment has a massive mark-up. Especially anything that's a bit different. To get high compression tights / socks that aren't black / beige I need to import them from the states. The tights cost £60, plus postage, plus import tax. I guess this is partly any 'speciality' and partly because they are designed to function alongside US insurance companies and people who can afford to pay them.

Today's 'firsts' cost about £200. I have been delaying getting hold of things I really need because I didn't have the money, I am lucky that my parents were able to help me out. This is why I need DLA - because being disabled is expensive - both in day-to-day stuff (e.g. learning to drive costs more in an automatic than a manual) and in specific equipment.

On a more positive note, each one of these things represents a step forward in the holistic management of my health. None of it's 'fire fighting'. It's all planned, it's all part of a system, it's all a little bit of the whole. I'm feeling good about that.

If you've tried any of the products listed can you comment and let me know how you got on with them? Thanks =]

*What do you guys think? Do multiple medical conditions / symptoms equal multiple impairments? Or is it all together my impairment singular? Does it matter? Am I rambling?


  1. Re: splints, of course if you are a child you can get jolly ones, but if you are an adult it's NHS beige or buy-your-own black or navy.

    There are two sites I've come across that do 'covers' for compression garments or splints:

    Not cheap but maybe a possibility for a night out or to keep the beige thing cleaner for longer?

  2. Beanie will recreate the squeal I just let out when we see you next. Awesome. This makes me incredibly happy, thanks =] x

  3. I like your point that you shouldn't have to hide your splints etc, and instead can celebrate them :-)
    Then again I can understand that the NHS has limited resources and so ordering different colours would make bulk-buying a lot harder. Probably I imagine most people do want to hide them, too (especially in an acute injury). Perhaps they should give out splints that you can dye or fabric paint or something!

    Personally I would classify anything as a result of your EDS as one impairment, and any other problem you have as different? It's a shame there aren't consultants specifically to manage conditions such as yours, as you end up getting your GP to do it all but with them always requiring a specialist to advise, which takes so long.

  4. I guess my point is firstly that people should understand that as someone with chronic joint problems my splint needs are different from someone with an acute injury and secondly that splints should be available in different colours at no extra cost - I understand that as is colourful splints often cost money - but also, even when ordering things specifically for me it's unusual for someone to ask me if I have a colour preference even if it is only between beige and black =]