Phew, that wasn’t as bad as expected!! But has anyone seen my knuckle??

Today was D-Day, my first appointment with my new doctor.  I can’t say that I was looking forward to it.  My brain was in total overdrive and the two nightmares I had last night definitely didn’t help.  I had written my list, an essential piece of my doctors appointment equipment for without it I am a blithering idiot, a list that unfortunately had become rather long in the time since I last saw anyone because half of what needed doing hadn’t been.  I had my other piece of essential equipment my fidget toy, today’s preferred one was my fidget cube.  So with that in hand I went, I was shaking I have to admit and although my mum was with me (she calms me down) I really was dreading it.  I think part of it was just my usual doctor nerves, my sensory overload was in overdrive, but there I was in the waiting room.  I have to admit seeing the new doctor (a female when I’ve had a male for ever!!) in my previous GP’s room was rather surreal but it did make it slightly easier, and joy of joys she was nice.  I wasn’t expecting her to be horrible, I just didn’t know what to expect and for me that is always a no-no.  The unexpected and change for me are two of the things I find hardest and along with my sensory processing problems are why I suspect that I may have an un-diagnosed autistic spectrum disorder, but at 38 and with all my other problems I have to admit that it isn’t something that I’m particularly in need of exploring.  So anyway I shan’t bore you with the details of the appointment, but I shall simply say that 30 minutes later (as I had a triple appointment) 3 referrals to new specialists, 4 prescriptions, multiple blood tests requested and half a dozen problems we are putting a proverbial pin in I’d say it was a success.  I even have an appointment for next month.  I have slightly settled since, my heart rate has gone from a resting 135 to a more normal rate (my POTS always goes mad at the doctors as it’s too hot, I’m uncomfortably sat in my wheelchair and there’s too many people the list goes on) and I’ve had two much needed a drinks!! After that a rather nice curry, and an evening of dropping off while trying to catch up on emails I have now, I think, just about recovered!!!

I said that I wouldn’t bore you with all my symptoms but a new and rather strange one is that one of my knuckles has gone A.W.O.L.  My fingers have been bad for ages, I wear both wrist splints and finger splints on both hands (see pictures) but my knuckles are both dislocating and the disappearing one is a strange one.  It’s making everything, from operating my mobility scooter to writing and typing, really really difficult. Not really sure what’s going on apart from dislocating and swelling, but as the hand therapist I’ve been seeing has now finished we’ve got to find a new one!! That is one of my appointments, when and if we can find a new specialist!! 

So all in all it wasn’t as bad as expected. Even my visit to Currys PC World wasn’t too bad, quick and all sorted out for me. Thank you #curryspcworld. So until next time, thank you for reading!!!

My A.W.O.L. knuckle (you can just about see the bump of my ring splint where my knuckle should be!!)

My ring splints. I may post a review of these soon, please let me know what you think in the comments

I know you’re going to get bored of me but I wanted to share a purchase with you!!!

Ok ok I know too many posts, but I really want to make a go of this and need to be seen to do that!!!

My first purchase arrived today so I wanted to share it with you. Let’s talk shoes. Every girls dream right??? Not mine, I’m the first one to admit that I’ve never been your typical girl, I love my motor sport and football, and used to do karate etc. I’ve never had the compulsion to have hundreds if pairs of shoes and a fancy cupboard to house them in, but since having heavy ankle splints it’s been an absolute nightmare to find any shoes to fit and that look ok with them. I have lived in my skechers as they’re comfy and look good and stretch over the splints. However despite never particularly wanting loads of shoes I have found myself wanting to find some that look good and aren’t trainers but that don’t cost the earth!!! I have tried countless larger extra wide shop bought brands but to no avail. They just didn’t go over the bulky splints. Now being in a wheelchair you’d probably say why do I need my splints on but no.1 I can’t use my wheelchair in the house currently so I have to use my sticks or crutches to get in and round, which would mean that I would have to wear one pair of shoes to get out of the house then one in my chair only to change back again after. I could see the logic in doing this only getting shoes on and off is a rather laborious challenge that often requires 10 minutes rest after and needs my mum’s help and that brings me to no.2 reason. No.2 reason is that my ankles are one of the most unstable joints I have. They are so loose that they wobble when I walk and they swell to such epic proportions that the splints at least keep it at bay a little (although occasionally I have to take them off as the swelling gets so much that it cuts my circulation off).

Anyways so with no alternative other than to wear my splints the search was on to find some shoes. I found, after a lot of research, my only option was the specialist shoe places that sell shoes in sizes past an EEE fit. Yikes, expensive and old people’s shoes came to mind. Well I have to say this is the case for a lot of them, the phrase I often say to people is apt here “I’m disabled not old.” I think that some companies have forgotten that just because we are disabled doesn’t mean we don’t care about what we look like. I searched through pages of shoes that my 98 year old grandma would have loved and was balking at the cost I would have to pay for the “pleasure” of wearing them. Not likely. Until I came across now I’m not pretending that all the shoes on here weren’t exactly the same as the others but they had a few that I liked and looked like ones I could get before my splints. There were some that I couldn’t justify spending on but I then found a pair of canvas pumps, on sale and with V.A.T off for disabled in the widest sizes, and hurrah they went up to the epic size (6-8 extra wide) to accommodate my splints. I could have cried, I ordered them on the spot and was so happy I even didn’t mind the delivery charge (something which I have my own little rant about on many an occasion) because the discount off AND V.A.T relief meant I paid the price they were to start with (if that makes sense, I apologise because my brain is still completely addled with this heat)!!! Anyways they came yesterday and joy of joys fit, and even have room for my feet to swell without cutting off my circulation. They’re soft and feel so light I might have been wearing slippers. They’ve got elastic “laces” allowing for extra stretch and elastic side panels to fit better over my splints. I’m so pleased.

So what do you think, and please excuse the ultra white tree stumps I call legs!!???


You wait a whole year for a blog post and two come along at once!!

When I wrote earlier I didn’t expect to be writing again so soon………but here I am!!! I forgot when I posted that although I’m geeky in many ways  (liking Star Trek and sci-fi ) I forgot that ─Ćoesnt extend to technology.  My total ineptitude when it comes to technology lead to me merrily sharing away hoping to get someone to read my musings but having not published it properly and despite adding a link to the post no one could see it. A lot of head scratching and downloading the WordPress app and I found my long post happily sitting there waiting to be published!!! Doh!!! 

Anyways so I decided to then decopatch the box that I’ve had sat waiting for months to do. I got all the things out and started, forgetting that as it’s a hot day sitting upright leads to POTS symptoms. Also doing anything like this takes a lot out of me and my hands and my shoulders allowed me to do the lid and no more. I’m now lead out on the sofa waiting for my symptoms to subside……… of the many many downsides of EDS, POTS, fatigue, Carpal tunnel syndrome and long term conditions like them!!! 

Hopefully I’ll actually publish this post correctly!!!