I've had a lot of different appointments this week at my house and at the hospital and have generally been really busy trying to think about moving! One thing that's made it all easier is that I have very understanding people working with me, especially my social worker and physio. They came to see me yesterday morning and were really good. One thing about ME is that it's not just about your physical energy- emotional things can really drain you just as much. And this moving business is soooo emotionally draining; I'm excited about moving but scared too. So obviously all of that has meant I have less physical energy and Julie and Abi yesterday morning completely understood that. They just generally helped me to work out how I'm going to manage moving and really taking it easy, and pointed out a lot of things which will take up my energy which I hadn't even thought of! Even though I'll be moving up a lot of my stuff when Rob goes, I'm not going to be there permanently as I still need a lot of help. But it's definitely something to aim for!
You can sometimes feel pressurised to have improved massively between appointments. But with Abi, my physio, I don't feel that at all. I have goals, but it's not a test to see if I can meet them. Quite often before I've found that if I don't achieve something, I feel like a complete failure. But if I can't do something, Abi is very quick to reassure me and remind me that I've improved a lot. And that really helps. And she doesn't push me to do things either; I only try to do something extra when I'm completely able to achieve my previous goals happily with no payback. For example, my goal last time was to be able to walk down and up three stairs a day. It sounds simple enough, but for me is a massive challenge. But with a lot of grit I managed to achieve it. Abi got me to try another three, but I couldn't manage it- the pain was too much and I was just too exhausted. It automatically made me feel really fed up; I don't think you can really help that feeling because it's something that's so normal to everyone else. But Abi reminded me that a few weeks ago I wouldn't have even been able to manage those three stairs and to feel proud of what I'd achieved. And when I'm ready, I'll very slowly go to four stairs. But only when I'm ready; Abi said I have to really listen to my body. It means a lot that someone is acknowledging these things, because some health professionals don't and it just makes you feel like more of a failure.
This week I also managed my first trip out into Taunton, the town where I live, since April last year. Rob took me to Costa coffee! It was a trip of very mixed emotions though. I used to go into Taunton so much and over the years have spent many many hours in Costa's! I love Taunton- there's just something about it, it's just home (it's in the photo).
Anyway, I was absolutely over the moon to be getting out and doing something so normal again. It was really weird but I almost wanted to say to people 'see, I'm normal too' and for people to notice that I was in town, but obviously to everyone else I just looked completely normal and they didn't know about what's been going on for me. On the other hand though I felt desperately sad because even though I was doing something normal, I didn't necessarily feel normal. Rob had to drop me off as close as he could because I couldn't walk from the car park, and I had to hobble into Costa's. It may well have been me being paranoid, but it felt like people were noticing me and staring- I felt a bit uneasy until I got to sit down. It also made me realise just what I've been missing out on and what I am still missing out on- being in Taunton again just made me want to walk right around the place, go in all the shops and say hello to people that I know just like I always used to. But it all made me realise that once I'm better I am going to appreciate being able to do things so much. And I had the most AMAZING hot chocolate, just like the old days! I had extra whipped cream and marshmallows, along with a melted cheese and ham toasted panini which was amazing. Oh dear, I'm making myself hungry writing about it!Today has also been fairly busy organising the move up to Banbury. Rob's going on Sunday as he starts his new job on Monday. Next week's going to be pretty tough without him! He has to stay in a hotel for the week as we can't have the flat until next Saturday. As I'm named on the tenancy agreement, I have to be there to get the keys too so I'll be going to Banbury next Friday to go to the estate agents on Saturday. And then the flat's all ours! Rob's parents are bringing a van up with all our stuff like furniture. I didn't realise how much we needed! As the journey is going to be really hard going for me physically I'm going to stay up in Banbury for that week (I have a load of appointments the week after). I'm excited although slightly nervous about the payback I'll be getting and how I'll be managing cooking/ cleaning/ unpacking etc. Although Abi and Julie told me the other day that the most important thing to do is rest; if I can't get things unpacked, it doesn't matter. I think it'll just be nice to have a change of scene to be honest! Being house bound for so long certainly makes you get a bit bored of the same four walls all the time. I feel like a caged up animal!
My friend Dawn also came round today which was really lovely. We've been friends since we started sixth form. She's another person who I've been really lucky to have around! When I was in hospital she'd come to see me and cheer me up on her lunch break; she works just down the corridor from the ward that I was on. Dawn is fantastic because she's always so sunny and full of life, and we always have a good laugh about something or other. She's one of those people who you can't help but smile with, even if you're feeling rubbish! The photo is of us two back when I was in my first year of university and had come home for the weekend (I was nineteen- where has the time gone?!). It was so good to see her today! We had a really good catch up and talked about 'normal' things, as in not my ME. That always makes me feel better; I feel like my illness dominates my life so much that sometimes it seems to be all I can think about. So having a friend over to talk about other things was brilliant. And what was lovely was that she didn't push me to be more animated- she understood that I was running very low on energy (I was crashed on the sofa under my duvet) but she still acted like normal around me which was brilliant! And Rob even made her a cup of tea- well, if we're living together he's going to have to learn!
No comments:
Post a Comment