A Little Update

It will be little this time, I promise!

I now have a new splint for my hand, a thumb spika. My fingers are free, huzzah! 8 days until scan day. The lovely ladies at Hand Therapy have given me Oval-8 splints for my pinkie, ring and middle fingers on both hands, as the hyperextension shocked them a bit. So far they seem to be really helping, but they aren't pretty at all haha! I'm planning to try and jazz them up a bit with nail polish and gems haha!

My neck is still unfunky. The time has flown by! I'm back sleeping in my bed now, because I missed my electric blanket and also I can be just as uncomfortable out there as I was in here on the sofa!

There is a whole shitstorm going down with my local council and ATOS right now. I'm reluctant to go into details, but thankful that I have a local councillor and also my local MP on my side. I was so angry yesterday that I dropped the C-Bomb in front of my Mum. Whoops. I apologised for saying it in front of her, but not for saying it, as I meant it. REALLY meant it. 

I'm starting to plan what I'm going to do for EDS Awareness Month this year. If anyone has any ideas, please leave me a comment, as I'm a bit stumped!

So... It's Been A While!

I apologise for a long absence. The main reason for this is that on the 4th January, I had a freak accident and have done some damage to my hand. I lasted 5 whole days into 2014 before having to visit A&E. A new record! Humph. I now have a moulded thermoplastic splint which has support for my index and middle fingers, and a Spika support for my thumb. My fingers have regained movement, which is great, but my thumb is in a very sorry state. I am waiting for an ultrasound scan on it, to take a look at all the soft tissue and also the joint itself. I got the appointment letter today, and it is for the 26th of February. It feels like forever away! 

You don't realise just how important your dominant hand is until you can't use it. I can't grip at all at the moment. Bras are utterly impossible, as are cans of drink, or any packets that need to be opened. It also means I can't crochet. Or play my lovely Xbox that I got for Christmas. *cries*. Which means I am terribly terribly bored. I am going to start a jigsaw I think.

So yes. After a really lovely Christmas (technically Christmases, I got to enjoy one at home, then an extra two with the Uberman's family, as some were there on the day, and then some more came over on Boxing Day!), January has been fairy unpleasant to me so far. My back has been misbehaving terribly, and I am currently waiting for a prescription of Diazepam after a particularly violent sublux at the weekend sent my muscles into spasm. Unimpressed doesn't cut it, I am thoroughly fed up. 

I will be back soon, hopefully with a more positive post. It hurts my hand a lot to type, but I'm going to set up some speech recognition software to try and help with that :)

Time To Be Honest

As I promised in my last post, here is an update from the last few weeks of me. I have decided to be totally honest and frank about things.

After being told that my feet were both very damaged due to the majority of my connective tissue in there being effectively useless, I kind of floated along in a little bubble, not reacting at all to what I was told. 

The things which were put into place following my discharge from the surgeons have started happening. I have begun physio with the loveliest lady, who is the first I have seen who completely understands that the EDS affects everywhere. This is almost miraculous at my local hospital! She is going to treat me as a whole person, step by step. We've set a plan in place to get me strong enough to start hydrotherapy, so I have a goal to reach. 

This week, I go to meet the orthotist to be measured and prepped for my Ankle-Foot Orthosis. Should be interesting. Then they'll go away and make it (as I understand it anyway), and in a few weeks time, I go back to get it fitted. It will need a name when it arrives, but I guess I won't know what to call it until I see it. 

Alongside these things, I've been having real problems with my knee and back. The MRI scans really knocked seven bells out of me. You don't really think that something as simple as lying still in a big tube is going to cause problems for over a week. It does for a bendy. Since I hurt my back it has been incredibly painful to lay on whilst I'm straight, so being unable to move for almost 70 minutes left me in complete agony. I was just starting to get over that...

And WHAM. One simple stretch out from being tired and I am in so much pain. I can't think straight. This is taking so much thought and time and effort to type out. I can't get comfortable sitting, I can't get comfortable to sleep... I'm running on empty. Not being able to weight bear on my knee is making movement so very hard. I have zero spoons left after a hop from my bedroom to the sofa. Every single slight movement sends pain screeching through me. A simple cough or sneeze leaves me ready to cry. I am at break point. 

I also spent Saturday morning researching something that was noted on the letter sent to my GP from the Spinal Diagnostic team, and cc'ed to me. I am still utterly gobsmacked. It totally explains every last one of my symptoms, has established links with EDS and connective tissue disorders... but it has been totally ignored by the hospital. I am going armed with as much information as I can to my next neurology appointment, to try and find out why it hasn't been followed up. 

I don't like having to let all of this out, but if I don't, I think I'm going to go crazy. I feel like I'm dragging everyone around me down, which I hate. I know that people are in far worse positions than I am, and I should be grateful for that, but at the moment, I just can't keep the brave face on. Everything just seems so shitty, and I don't really know what I can do to make it better. I feel bad that everyone around me can see I'm struggling, and can see how miserable I am. I can only imagine what it feels like for them to see, which makes me feel so guilty when things are bad like this. I just can't seem to pull myself together. 

If there are any bendy people, or fellow spoonies reading this, who could offer me some advice on how to get smiling again, I would love to hear from you. I am sure there must be light somewhere. I just need to find it.