It's been a topsy turvy kind of week.
On Tuesday, I saw Neurology. To be perfectly honest, it was the biggest cop out of an appointment I have EVER had. The letter from my ankle consultant had been put into my file, stating how I should be referred to the inpatient programme at the Royal National Orthopaedic Hospital, in Stanmore. Neurology man saw this, and basically refused to discuss my back any further, as they would help me there. So I am left with no sensation of needing to pee, and other things, but that is okay. It will come back eventually. Whaaaat. He also totally brushed off the information about the Tarlov Cyst that I know I have in my spinal cord, from a previous report. The symptoms of this cyst are the EXACT problems I am having. It felt like I was hitting my head against a bloody great brick wall.
I left there incredibly distressed. My last post explained why I hated September 17th anyway, and I had a bit of a breakdown. We had some time to kill before we went to see my Nanny, and we needed to get the flowers, so Mum and I headed to Tesco. I was crying too hard to tell my Dad what had happened, so Mum did it for me. I got myself calmed down, and we headed upstairs. Straight to clothing, obviously :P. Mum decided she wanted to cheer me up, and I came away with a lovely owl scarf, a lovely cupcake scarf, and a gorgeous starry skater dress. It's a stretchy material, and I always avoid those usually, because I am a very odd shape. I tried it on though, and it fitted really nicely, so it came home with me. I love it! After that, we sat in Costa. I had a chocolate orange hot chocolate, and it was divine. As I sat there, I started getting my thoughts together, and I realised that maybe, them palming me off to Stanmore would be a very good thing - they are a very specialist team with a very good background in Ehlers-Danlos, and spinal problems.
Wednesday morning was the turn of the GP. He gave me my choose and book paperwork for Stanmore, and we had a long chat. I am having some awful gastric problems. I won't go into too much detail on that heh, but lets just say it isn't pretty. He put it down to my meds. I understand they don't want me on these meds long term, but I wouldn't be taking them unless I absolutely had to. The decrease in dosage has left me in a lot more pain than before, but I am sticking with it - I now all these drugs aren't good for me. So he's given me some delightful Lactulose to go on with for now. We've also switched the Co-Dydramol for Paracetamol. I will be starting that at the weekend, so will report back with how that goes. With regards to the stupidly low amounts of sleep I'm getting, we didn't really get far - which now I think about it, isn't very useful. He also said I am showing classic signs of depression. Huzzah.
Wednesday afternoon was organisation time. I had to call the DWP to arrange my migration from SSP onto ESA. I am so sad that I am not ready to go back to work yet. I also found the phone call quite embarrassing- like I was doing something wrong by claiming for it. We shall see how that goes I guess. I also went online to book my Stanmore appointment. They don't have visible appointments, but contact you within two weeks. I put in the additional comments that I was available at short notice for cancellations, so fingers crossed I hear very soon :)
I am trying to focus on the positives from the last few days. If I do manage to get onto the programme at Stanmore, I am hopeful it will be very beneficial. Particularly with my spinal problems, but with everything else as well. It is better to be under specialist care than under the care of someone who doesn't understand my condition at all.
I thought I'd start finishing my posts with documenting stupid things I've done, or bizarre injuries I've picked up. They are almost always ridiculous, which makes them amusing. Laughter is a good medicine, so I thought I would share them with you.
Last night, whilst calling Bingo, I managed to smack myself on the chin with the microphone. Proprioception 1 - Shelley 0.
