I had a setback on Monday and am struggling to bounce back from it, although you won't catch me admitting that very easily! There are a few reasons for this; it feels a lot like now I've improved a bit I'm expected to keep on improving at the same rate. And I just can't keep it up, as hard as I'm trying to. I know that even before my setback I was trying to keep up a level that was too much for me; I'm not saying that I haven't improved significantly because I have, but not to the level that some people are expecting. I also feel a bit of pressure to not admit to being ill though because obviously time is running out. Rob starts his job on January 16th and the last thing I want him to do is worry about me! And the truth of it is that I am so sick of having to be cared for. I don't want people to feel sorry for me but I don't want them to rush me- I just want to have the space and time to get back to a level where, yes I've still got ME, but it's not severe and I can have a reasonably normal life. That's massively important to me and something that I hold on to every single day.
In reality, I'm not going to be ready to move up to Banbury with Rob straight away and that's something that's really getting to me. I've come to rely on Rob so much because of how he listens and really helps me, and I'm going to feel a bit isolated without him to say the least. One thing that he is especially brilliant at is understanding that this is a completely physical illness, which sometimes can be the hardest thing to get people to understand. It certainly saves a lot of energy being with him when I don't have to worry about justifying myself or my illness! The physio and social worker came back on Tuesday and talked about staggering how I move in with him. I'll start off staying up there for a couple of days and then coming home, and gradually as I get stronger stay a little bit longer each time until I've moved in properly. I think that's the best way of doing it! They were really impressed with how well I'm doing at the moment though which made me feel so positive. I'm working on the stairs now, walking down and up three steps at least once a day which is a massive achievement for me.
The other thing to consider about moving of course is what will happen with all of my appointments. I'm VERY keen to keep them all down here in Somerset to be honest. For a start, I know the people I see now; I've built up a lot of trust and it saves a lot of energy not having to explain everything from scratch at each appointment. Also, it took me so long to get into some of the services, the pain clinic especially, and I don't really want to go through another VERY long and complicated wait in Banbury. I'm also waiting here to see where I can go next as far as an ME service goes (I was discharged from the Somerset one as I'm too severe). There is a possibility that I may be going to Frenchay hospital in Bristol as apparently they have a lot of knowledge about ME. It's about an hour away from where I live, but there are people here who can take me (I'm nowhere near well enough to drive myself at the moment). I was looking on the NHS website to see where the nearest service to our new place is; it's a good forty miles away and with Rob working in the week there's no chance of me getting there myself. So I kind of need to keep my appointments down here as much as possible.
Unfortunately the other spanner in the works is that we've lost our flat! Everything was organised until we got an email from the estate agents yesterday explaining that the current tenant had withdrawn their notice to move out and that they couldn't let us have it anymore. Luckily Rob got a full refund on our deposit though- it prompted a sudden panic search of new places on the internet! There really wasn't much going at all but we've found somewhere; Rob's going to see it tomorrow and I'll go with him if I'm well enough. I'm holding on to the belief that everything happens for a reason though and that the new place will be all the better! Rob's already worked out that it's bigger, and it's in a much better location for both of us anyway- in the town centre. Rob could easily cycle to work meaning that we'd cut down on petrol costs, and it's 0.1 miles away from Banbury train station. That would mean that I could get a teaching job slightly further afield- I could get the train and be a proper commuter, if it's cheaper that is!
I'm managing to stick to my new year's resolutions pretty well too. Rob and I were watching some HILARIOUS videos on YouTube yesterday which didn't just make me smile, I couldn't get to sleep because I was laughing so much! And as for keeping up this blog- well, I'm doing it right now! So as far as that's all concerned, things are good! I'm setting myself new goals too that will spur me on; my next aim is to get myself driving again! It feels really sad that I haven't driven for such a long time, as it was so important to my independence and I really do miss it. But I know it'll be all the better when I can drive again!
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