Well since my last post I have been seriously touched by the amount of love and support I've received from people. It really does put things into perspective; physically I may be having a rough time at the moment but otherwise my life is so brilliant, all because I have the most lovely bunch of people around me. In hospital some of the less understanding nurses said that my friends, and Rob, were only going to stick around for so long with me being ill. But they're all still here, still making me laugh, and I can't help but think that those nurses might have been wrong. Because everyone is fantastic and are doing so much to keep me smiling- it's keeping me really positive.
I've definitely been getting into the festive spirit! On Sunday Rob said 'why aren't you playing any Christmas songs?' so on they went! I downloaded quite a few last year (not only did I have my bursary for doing my PGCE but it was also my first year with an iPhone!) and it was very nice to have them going again. Rob and I both lay on my bed and had a go at some Christmas puzzles which really passed the time. As a member of AYME I've joined the Somerset Local Contact group; this is pretty much as it says in the name. AYMErs from your local area all meet up and socialise every so often and are included in emails to just keep in touch with what the group's doing. I've missed the last three meet ups, including the Christmas party last weekend, because I've been too ill. But Kat, who runs the group, (and who I previously knew through college and mutual friends- small world!) set up a 'virtual party' and sent us all a pack with some puzzles, a balloon, a card signed by everyone who made it to the party and a competition. My ME means I can't concentrate much on puzzles, but it was a lot of fun helping Rob to do them.
I've received a lovely bundle of Christmas cards over the past week too which has made me very excited to be getting them, but also guilty that I haven't finished mine! I tried to write some on Sunday but because I struggle with writing, especially by hand, I only got about four done. It's been a bit of a panic trying to get them all done really; being in hospital for so long really put me way behind on preparing for Christmas and I just can't do it all in one go. Even Christmas itself will have to be really carefully paced out. I won't be able to open my presents and eat Christmas dinner and play a board game all in the same day so I'm trying to work out what will happen on which day. It's great for me because it'll mean Christmas will drag out over a few days- perfect! (See, there are a few perks to having ME!)
Yesterday morning, my physio and social worker came to see me. Alice had texted me on Sunday night to ask if I wanted to go and meet Jake; I didn't need asking twice- of course I did! The one obstacle though was that I can only walk two or three meters at the moment on a good day and the staircase is a good eight or nine meters away. And then there's the challenge of actually getting down the stairs. I was so motivated to get there though; I'd seen a few pictures of Jake and completely melted- I'd actually cried! (Yes, I know that's fairly pathetic, but he is soooooo gorgeous!) So that picture was in my mind and I was determined to get there. Unfortunately, my body wasn't playing ball. Despite my best efforts, I didn't manage to make it out of my bedroom and Abi, my physio, had to very gently break the news that the stairs weren't going to happen. I was really disappointed, but not defeated! I rang Darren and explained the situation; he was with Alice and Jake at the time, and we all very excitedly agreed that I'll go to see them tomorrow. I'm being carried downstairs by the ambulance men for my hospital appointment then; I'll be downstairs anyway so I'm going to make the most of it. And seeing Jake will just give me so much of an incentive to get better! He's only just been born and he has no idea how much he's helping me already.
One area of conversation that did come up with the social worker and physio is the whole muddled up medical profession. As an ME sufferer it's extremely frustrating as neither you nor your GP knows who to turn to. If you had a heart problem, you'd go to see a cardiologist. For a skin problem, you'd see a dermatologist. If you needed an operation you'd see a surgeon. With ME... well, there isn't really anyone who deals with ME. When I was in hospital, they put me under a care of the elderly team in a gynaecology ward. And, inevitably, they weren't really sure what to do. It was very frustrating to keep telling them that my pain relief wasn't working, that when I got a migraine my whole body would become paralysed, that I felt so dizzy that I'd actually fainted sitting down... all to be met with 'well, unfortunately that's all part of ME. And you don't respond to pain medication'. I mean, surely in this day and age there must be some type of pain relief that works for people like me? Probably the most helpful person to have seen would have been a neurologist. However, they got me a psychiatrist who said I didn't need any psychological treatment and left it at that.
I was under an ME clinic for six months (which was the only one in the area and was about forty five minutes from me) which had a GP with a special interest in ME. Fair play to him; if I'd have been a doctor I definitely wouldn't have thought of that as an interest! However, whilst in hospital the person I saw there rang me up and told me that they were discharging me because I was too severe. So we're on the hunt now for somebody who specialises in ME and can take me on.
The other problem that been discharged from the ME service left was that their doctor had put me on a LOT of medication. There's no cure for ME and no magic pill that you can take, but they certainly try to drug you up on as many other tablets as they can. I mean, I've been taking eighteen tablets a day. They didn't do anything about it before discharging me, and they didn't do anything about it in hospital except increase my dose of the pain relief (that still doesn't work). My GP really isn't sure how to handle my medication; he's a lovely guy, but really in the dark about ME. I think that's quite common though; they aren't educated about it at medical school, and being such a misunderstood condition- well, I actually feel pretty sorry for them. They must feel an awful lot of pressure when they're faced with somebody with it. As least my doctor believes that I've got it and that it's a physical illness- I think a lot of doctors still don't believe it exists!
It's going to be a very busy day tomorrow, a very exciting one though! Very occasionally you just need to do something special to keep you going emotionally, despite the physical payback. Yes, going to Alice's probably will cause a big relapse. Yes, it probably is irresponsible of me. But it will be worth every single second of payback. You only have one life- you really have to enjoy it as much as you can!
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