One hot chocolate with cream and marshmallows please!

Well hasn't this week been busy! It's been seriously exhausting so excuse me for not posting sooner.

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!

Everything happens for a reason...

Today unfortunately isn't a great day. But then yesterday I went to Banbury again so I'm hardly surprised! We were looking at another flat; after securing a really nice one last week we got an email in the week saying that the current tenant had withdrawn their notice to move out. So we had a mini panic! We had to very quickly get back on the internet and find somewhere else. We found one place that looked quite nice but only had one photo of the outside. However it was in a much better location and was only £5 a month more expensive so we decided to have a look.

I wasn't going to go with Rob as I wasn't feeling fantastic on Thursday. But I knew that if I didn't go I'd be more anxious about moving and not knowing what it would be like, and that in itself wouldn't do my health any good. So I went too and saw it for myself. I'm a great believer that everything happens for a reason and this proved it really; the flat was a lot nicer than the previous one. It was perfect. It's a ground floor flat which is great for me, and there are no stairs going down to it unlike the other one. It's bigger and laid out a lot more nicely; we have laminate wooden floors which will be easier to clean. It's more spacious and lighter too and our room is lovely- we've even got a built in wardrobe with mirror sliding doors! We also have a breakfast bar and a little patio which is next to the walkway into town. We're VERY close to town and the train station too. And also we're close enough for Rob to walk or cycle to work, so the extra that we'll pay in rent we'll be saving in petrol.

Physically I didn't cope with the travelling very well unfortunately! I slept most of the way there and a lot of the way back too. Although not far from home my body just snapped and I threw up in Rob's mum's car- whoops! It was quite funny though as Rob had a bit of a panic drive for two miles to the services to clean me up- the way he did it was hilarious, it was like being in a sketch show! Inevitably today I'm really not too well. My heart was going crazy all night, my head was too. I've been getting some horrible muscle spasms which feel like someone is clenching my muscles seriously hard. I feel like I've got nasty flu and am just generally massively exhausted so I'm just tucked up in bed with Tigger lying next to me. She's pretending she's really ill too- she hasn't moved for the last hour or so!



The way I'm feeling has brought out a lot of frustration about having this illness. I would give so much, in fact I'd give anything, just to have one day where I could do something normal and NOT have all this horrible payback. Well, actually I'd give anything to do a lot of things even if I got the payback- there just seems so much that I'm not able to do at the moment. I really do miss the life I had before this all happened. I was really active, always on the go and loving life every single day. Even having it mildly I still managed to have a completely fantastic time; alright I never really did the whole student night life thing at uni, but I joined things like netball and the woodwind group and made some very special friends. I had some wonderful nights in with my house mates, watching films together and having such a laugh. One time we had our own little Christmas which was fantastic. And we also did things like going ice skating in the evening which was just great fun. I'm not saying that I don't have fun or enjoy life now, because I do, but it's a completely different life. It's a life where I have to accept feeling trapped by my body, mainly communicating with people through texting and Facebook. It's a life where I have to make excuses for not doing things when I am so desperate to do them. It's a life of constantly being in intense pain which is just made worse when I try and have a little bit of normality. But the worst part is that nobody can really understand your pain because it's an illness that is so hard to explain. Because you don't look ill, it's so difficult for people to really see how you're feeling because to them, you look fine.

Like I said before though, I'm a real believer that everything happens for a reason. I strongly believe that there's good coming out of all this that's going to help me for the rest of my life. If I have to live with ME then so be it (as long as it's not severe like it is now!) but I know I won't be alone- I've made some truly wonderful friends, strengthened existing friendships, learnt so much about myself, found new interests and most importantly I've gained a lot more understanding towards other people. I'm really determined to put all this negative stuff going on to good use!

The trouble with moving!

For Christmas I was given Florence and the Machine's second album. I'm not going to lie; I can't get enough of it! It's actually quite helpful to me listening to it as I'm trying to very slowly increase the amount of noise that I can take in a day; I have to build it up quite slowly. I'm having to build everything up quite slowly at the moment to avoid a big setback.



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!

So here we are then... 2012.

My first post of 2012- I can't believe it. It doesn't seem like two minutes ago that we were celebrating the end of 2010 and beginning of 2011!

New Year's Eve was brilliant, despite me crashing and losing all energy at about 11. But actually I was pretty impressed that I lasted that long, and I still managed to see 2012 in by resting on the sofa whilst everyone else carried on having fun. We watched the fireworks in London on BBC 1- it was perfect as I love fireworks but they're always too bad for my noise sensitivity. I had all my friends over which was really lovely. It meant that I still had everything I needed around such as pain relief and somewhere to lie down, but I was still able to spend the evening with everyone having fun. And we had a lot of fun! I even managed a nice glass of wine- it went STRAIGHT to my head, supposedly because I hadn't had a drink for many months. I was nowhere near as bad as Rob though who got completely trashed! He was fine until he started a race with the other boys to see who could knock back some dry scrumpy the quickest. All I'll say is that we are from Somerset...!

I've been paying a lot for going to Banbury and having the New Year's Eve party. It seems to have knocked me back to being mainly in bed again, although not quite as bad as I was before luckily. All of it was worth it though; if I hadn't have gone to Banbury I'd feel a lot more scared about moving there, not knowing what my new home would be like. And I would have been very upset to have not spent New Year's Eve with my friends- it's what we do every year. I'm well aware that if I keep doing things like that then I won't get better, but that's it now- I'm behaving myself. Even if that means not moving in with Rob straight away but waiting until I'm more able to look after myself then so be it. That's one of my New Year's resolutions actually. I usually make them but have forgotten what they are by the end of the year! So this year I've tried to really think about ones that will really benefit me, and here they are:

1. Keep up this blog. It's really helping me to get everything out of my system and it's allowing me to make sense of things a lot more easily. Plus I'm hopefully raising awareness of ME; if that benefits other people then that's brilliant!

2. Pace myself. Last year I was awful at it and that's what ultimately led to me being so poorly. I need to really make sure that even on a good day, I'm really strict with sticking to my limits so that I can avoid payback. It's going to be tough and incredibly frustrating but I don't want to spend this year as a severe ME sufferer too!

3. Find at least one reason to smile every day. That doesn't just go for the battle with my ME. That applies to whatever I'm doing. I may well regret saying this, but I'm hoping that at some point this year I'll be so up to my eyeballs in planning and marking that I won't know where to start. I'll have been teaching all day and may have had some grotty kids to contend with, I may have had parents' evening and be home late and STILL have a lot to do. But even then I'm going to find something to smile about- in that case I'm sure it'll be that I CAN do all those things, as much of a nightmare as they may seem at the time!

I also want to keep in close contact with my friends and keep getting closer to those lovely other AYMErs, but I don't need to turn that into a resolution- I know it's a given that it'll happen!