Not The Happiest Of Updates

Hello Everyone.

Firstly, I apologise in advance, as this is likely to be a long and rambly post, and not a hugely positive one. Sometimes it's just hard to be positive about a chronic illness. 

The truth is, I haven't been feeling anywhere close to positive for some time. I have had so many kicks when I'm down for the last year in particular. Every time I thought I had taken a step forward, along came something to kick me back by 3 or 4 steps. It's been really hard to deal with.

A couple of years ago I had some CBT and relaxation therapy, which was not perfect for me by any means, but I did take some useful stuff away from it. So when things have seemed dark, I've employed those and been able to lift myself back up. 

Around the time I found out that nobody was helping with my back, that my feet were effectively useless, and that my goal of going to RNOH in Stanmore was temporarily (still is!) blocked off, I felt like a huge, heavy black blanket had draped itself over my head and shoulders, and no matter what I did, I couldn't lift it. None of my CBT techniques were working. So it was a case of putting on a brave face (a mask, I guess) when I was around others, making everything look fine. Inside, I was in total limbo. The world was rotating around me but I was stood dead still in the middle, locked in with my feelings which I just couldn't get rid of. 

Christmas and New Year came, which lifted me a bit. All too soon they were gone though, and then I hurt my hand. That seemed to be the straw that broke the camel's back, and I realised that I couldn't keep on like I was. I have to stress that at no point have I ever felt suicidal, or like I was going to self harm. I just feel like a big useless lump who feels indescribably guilty about how my life impacts on those around me. Some words intended to be nothing more than a simple statement have really hit my self esteem hard, and the blunt truth is, I truly hate myself right now. 

I went to see my GP, who is a lovely lovely man, and told him everything. He had asked me on previous appointments how I was doing, and I had pretended everything was fine. It clearly wasn't, so he wasn't surprised when I finally admitted it - he said he had seen it for himself. So maybe my mask wasn't as good as I thought it was after all. 

He has put me onto Fluoxetine (aka Prozac), and I have a diagnosis of severe depression. On the 14th Feb we will be reviewing how I am, and looking at a referral to speak to someone who specializes in depression caused by chronic pain. When I spoke to my physio yesterday, she told me she knew of a brilliant guy based at the hospital, and she was going to liaise with my GP about referring me to him. (Something positive, finally!)

I wanted to post this to try and give me somewhere to write it down and get it out there. I don't have to hide it anymore, and with the help of my LBLC ladies, I have realised that it isn't something to be ashamed of. I am not going to say I feel instantly better, because I don't. I know full well this isn't going to be a short term thing. But I know that there are things and people there to help me. So I'm taking my first step down my own zebra brick road, and who knows where it will lead. 

Friday Catch Up

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.