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!
My life and ME
...what it's like to have ME/CFS.
Thursday, 12 January 2012
Saturday, 7 January 2012
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!
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!
Thursday, 5 January 2012
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!
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!
Monday, 2 January 2012
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!
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!
Friday, 30 December 2011
Goodbye 2011, hello 2012...
I know I've said before that doing too much really aggravates your ME and makes you feel terrible. I'm currently going through one of those times. I think I've been behaving like I'm better than I actually am sometimes, and lovely at it is at the time it's catching up on me a bit. I'm getting a lot of painful muscle spasms and my legs are going all twitchy which isn't particularly nice, and my head is pounding like mad. But I know why this has happened; we went to the flat viewing in Banbury today which for me was an incredibly exciting and really special thing to be doing. We really liked the flat; it wasn't the biggest but it was big enough for us and was very cosy too. It'll be lovely on a wet and windy evening being inside with all hell breaking loose outside- it sounds a bit grim but I love those times! As soon as we'd seen it we went to the estate agents and took it so it's officially now our first home. Rob has a six month probation period with his new job so we've got six months on our tenancy which will give us time to see how things are going. It feels so weird to think that I'm actually going to be living with Rob; I'm so used to being apart from him despite having him home since uni. In some ways it feels like we've just had a massively long (and very eventful!) holiday and that he has to go back, but obviously that's not the case any more! But it was really important to me to be there today; it's one of those times that doing something massively outweighs the payback.
That's not to say though that by Sunday I'm going to be a bit of a wreck and maybe regretting trying to take on the world! Tomorrow is obviously New Year's Eve. The photo is of Rob and me last year; my ME was just beginning to take a turn for the worse then. I'd been in hospital with what they now know to be my ME, and although I was feeling better I still hadn't fully recovered from it. Obviously this year things are more severe and it became clear I wouldn't be going out! So when you can't go to the party, bring the party to you! Yep, I'm having all my friends over tomorrow evening to see in the New Year with me. I've got my bed upstairs too so I can keep going up for little sleeps (there's no way I'll manage it all on the go). My friends are amazingly understanding though and won't have any problem with it. They'll carry on having fun! As long as I can count down and see in 2012 with everyone else I don't really care about what else happens.
I've been thinking about 2011 a lot over the last few days. Obviously a lot of it for me has been absolutely horrible. If someone had said to me this time last year that 2011 would turn out like it has, I would have either laughed at how ridiculous it was or cried! It's been a huge struggle trying to cope with my illness both physically and emotionally. There have been a lot of tears, a lot of times where I've felt like giving up, months too ill to get out of bed and wondering how much worse it can possibly get. One of the hardest things to deal with has definitely been the disbelief; I really don't want this to sound like I'm getting at people because that really isn't what I want to do- I can understand where they're coming from. I suppose though because I've known how my body has been, it's been really frustrating not being able to explain that to other people. It's felt a lot like I've needed to justify myself, not only to other people but almost to myself too. I've had to convince my own mind that I am genuinely ill and that I can't just ignore it- that won't make it go away. I've had to get past those feelings of feeling so angry at myself for not being able to do what I should have been doing, what everyone else is doing. As for being in hospital, well that was just a bit rubbish really!
However it hasn't been all bad by a long way. I wouldn't say I'm glad to have ME, but I'd be lying if I said that this year hadn't brought some real blessings. Joining AYME was such a massive thing for me; I really do treasure the friendships I've made there, not just because they have ME too and understand what it feels like but also the fact that they are genuinely wonderful people. I've been amazed and incredibly moved at the loyalty and total love of my friends; they're the best ever, and I am so so lucky. I've really learnt to be honest with myself and listen to myself and that's really strengthened me mentally which can only be good. Being so unable to do things has forced me to look for other ways of filling my time, such as writing this blog! And that's been really helpful to me. This has all really strengthened my relationships with many people too, especially Rob. And best of all, the things that I have achieved have meant everything. My biggest achievement of the year has to be qualifying as a teacher; hard as it was, and despite having to go part time, I've done it and that means more than I could ever describe. But there's no way that I'd have got there without the support of people around me so I'm forever grateful!
So even though I'm going into 2012 as a severe ME sufferer, it's fair to say that I'm a lot more prepared for it than I was this time last year. Next year is going to bring a lot of hard times I'm sure, but there are some fantastic things to look forward to- I can't wait!
That's not to say though that by Sunday I'm going to be a bit of a wreck and maybe regretting trying to take on the world! Tomorrow is obviously New Year's Eve. The photo is of Rob and me last year; my ME was just beginning to take a turn for the worse then. I'd been in hospital with what they now know to be my ME, and although I was feeling better I still hadn't fully recovered from it. Obviously this year things are more severe and it became clear I wouldn't be going out! So when you can't go to the party, bring the party to you! Yep, I'm having all my friends over tomorrow evening to see in the New Year with me. I've got my bed upstairs too so I can keep going up for little sleeps (there's no way I'll manage it all on the go). My friends are amazingly understanding though and won't have any problem with it. They'll carry on having fun! As long as I can count down and see in 2012 with everyone else I don't really care about what else happens.
I've been thinking about 2011 a lot over the last few days. Obviously a lot of it for me has been absolutely horrible. If someone had said to me this time last year that 2011 would turn out like it has, I would have either laughed at how ridiculous it was or cried! It's been a huge struggle trying to cope with my illness both physically and emotionally. There have been a lot of tears, a lot of times where I've felt like giving up, months too ill to get out of bed and wondering how much worse it can possibly get. One of the hardest things to deal with has definitely been the disbelief; I really don't want this to sound like I'm getting at people because that really isn't what I want to do- I can understand where they're coming from. I suppose though because I've known how my body has been, it's been really frustrating not being able to explain that to other people. It's felt a lot like I've needed to justify myself, not only to other people but almost to myself too. I've had to convince my own mind that I am genuinely ill and that I can't just ignore it- that won't make it go away. I've had to get past those feelings of feeling so angry at myself for not being able to do what I should have been doing, what everyone else is doing. As for being in hospital, well that was just a bit rubbish really!
However it hasn't been all bad by a long way. I wouldn't say I'm glad to have ME, but I'd be lying if I said that this year hadn't brought some real blessings. Joining AYME was such a massive thing for me; I really do treasure the friendships I've made there, not just because they have ME too and understand what it feels like but also the fact that they are genuinely wonderful people. I've been amazed and incredibly moved at the loyalty and total love of my friends; they're the best ever, and I am so so lucky. I've really learnt to be honest with myself and listen to myself and that's really strengthened me mentally which can only be good. Being so unable to do things has forced me to look for other ways of filling my time, such as writing this blog! And that's been really helpful to me. This has all really strengthened my relationships with many people too, especially Rob. And best of all, the things that I have achieved have meant everything. My biggest achievement of the year has to be qualifying as a teacher; hard as it was, and despite having to go part time, I've done it and that means more than I could ever describe. But there's no way that I'd have got there without the support of people around me so I'm forever grateful!
So even though I'm going into 2012 as a severe ME sufferer, it's fair to say that I'm a lot more prepared for it than I was this time last year. Next year is going to bring a lot of hard times I'm sure, but there are some fantastic things to look forward to- I can't wait!
Wednesday, 28 December 2011
Things are looking up!
Well it seems so long since my last post and so much has happened! I was hoping to post something over Christmas but I had to really pace myself to get through it so it had to wait.
I had my medication changed before Christmas and I have improved so so much. I've basically gone from not being able to get out of bed to now walking around the house with no sticks. It's all been very gradual, something new every day, but I'm getting there very slowly. It seems a bit miraculous really! I am very impatient though and now I'm a bit better I'm finding it really hard to not do too much. With ME you have to be so careful because you can feel like you've got a lot more energy than you actually have. If you over-do it even slightly you get the payback and that's when things start to go downhill. So I want to do a lot and feel like I'm able to, but it's quite frustrating not being able to do it.
Of course feeling better meant that Christmas was all the nicer. Having the use of my legs back was the BEST Christmas present I could ever have asked for! I keep feeling like I've got something that I just want to keep using now; I keep walking round downstairs just because I can. It feels really odd not holding on to anything. I took my first unaided steps on Boxing Day and on Christmas Day I was able to give Rob a hug- the first one in months! So that was really lovely. I got some amazing presents too. My parents gave me a Kodak wireless digital photo frame; it can connect to and download photos from Facebook as well as connecting wirelessly to your computer. There's also an iPhone app that you can get to display photos on it, and the frame even has its own email address; if you email pictures it puts them directly onto the frame. It's really clever!
I paced Christmas out a lot and started by opening a few presents downstairs. I worked up then to having a little trip out in the car to see the lights in Taunton and then building on that the day after. By Christmas Day I was able to have my Christmas dinner with everyone else and even watch the Queen! It was lovely to be somewhere that wasn't stuck in bed, just feeling normal really. I really treasured that feeling because it had been such a long time that I'd felt normal! Luckily though I seem to be getting a little bit stronger every day.
The other really exciting news is that Rob and I are moving in together in the New Year! He starts his new job in Banbury in either the second or third week of January and obviously will be moving up there. We would cope being apart, we did it for four years through university, but the fact is that we don't want to 'cope'. We've kind of moved on from being apart and so much has happened since then. So I'm going with him! We've narrowed down a couple of flats (to be honest there wasn't a lot going!) and are going to Banbury to look at it on Friday. Obviously that's going to be such a big step for me and one that may cause me a lot of payback. But emotionally I really need to go- it's incredibly important to me not only to see where I'm going to be living but also to do something that's normal. It means the world to be able to get out, much more than I can describe.
I'm still severely ill and I think I still need to remember that I'm not invincible! But as they say a journey of a thousand miles starts with the very first step. It's going to take a really long time and I know there'll be ups and downs, I've come to realise that's what ME is. But gaining a little bit of my life back means so much and long may it continue!
I had my medication changed before Christmas and I have improved so so much. I've basically gone from not being able to get out of bed to now walking around the house with no sticks. It's all been very gradual, something new every day, but I'm getting there very slowly. It seems a bit miraculous really! I am very impatient though and now I'm a bit better I'm finding it really hard to not do too much. With ME you have to be so careful because you can feel like you've got a lot more energy than you actually have. If you over-do it even slightly you get the payback and that's when things start to go downhill. So I want to do a lot and feel like I'm able to, but it's quite frustrating not being able to do it.
Of course feeling better meant that Christmas was all the nicer. Having the use of my legs back was the BEST Christmas present I could ever have asked for! I keep feeling like I've got something that I just want to keep using now; I keep walking round downstairs just because I can. It feels really odd not holding on to anything. I took my first unaided steps on Boxing Day and on Christmas Day I was able to give Rob a hug- the first one in months! So that was really lovely. I got some amazing presents too. My parents gave me a Kodak wireless digital photo frame; it can connect to and download photos from Facebook as well as connecting wirelessly to your computer. There's also an iPhone app that you can get to display photos on it, and the frame even has its own email address; if you email pictures it puts them directly onto the frame. It's really clever!
I paced Christmas out a lot and started by opening a few presents downstairs. I worked up then to having a little trip out in the car to see the lights in Taunton and then building on that the day after. By Christmas Day I was able to have my Christmas dinner with everyone else and even watch the Queen! It was lovely to be somewhere that wasn't stuck in bed, just feeling normal really. I really treasured that feeling because it had been such a long time that I'd felt normal! Luckily though I seem to be getting a little bit stronger every day.
The other really exciting news is that Rob and I are moving in together in the New Year! He starts his new job in Banbury in either the second or third week of January and obviously will be moving up there. We would cope being apart, we did it for four years through university, but the fact is that we don't want to 'cope'. We've kind of moved on from being apart and so much has happened since then. So I'm going with him! We've narrowed down a couple of flats (to be honest there wasn't a lot going!) and are going to Banbury to look at it on Friday. Obviously that's going to be such a big step for me and one that may cause me a lot of payback. But emotionally I really need to go- it's incredibly important to me not only to see where I'm going to be living but also to do something that's normal. It means the world to be able to get out, much more than I can describe.
I'm still severely ill and I think I still need to remember that I'm not invincible! But as they say a journey of a thousand miles starts with the very first step. It's going to take a really long time and I know there'll be ups and downs, I've come to realise that's what ME is. But gaining a little bit of my life back means so much and long may it continue!
Wednesday, 21 December 2011
The physio and the monkey!
I can't quite believe where the days are going, but it seems that one minute it was the beginning of September and now here we are a few days away from Christmas! I'm getting VERY worried about what's happened to Rob's Christmas present. It says it was dispatched on November 29th but I still haven't had it delivered. I rang the sorting office and they have nothing for me and I also got in contact with play.com; they haven't replied! I really hope I haven't been scammed!
I'm really looking forward to Christmas. I've made a plan of how I'm going to manage it, pacing everything out so that I can enjoy it as much as possible. I'm going to try and manage without my carers on Christmas Day and Boxing Day too; obviously it's their Christmas too, so they've probably got better things to do than come and sort me out. And I also have every intention of going downstairs still (more about that in a minute) so I won't need them to bring up my medication and other things like that. I'm really looking forward to just doing 'normal' things like eating downstairs so so much. It feels like an absolute age ago that I was doing those sorts of things, so it'll be really special! It might sound really sad, but I'm really looking forward to watching the Downton Abbey Christmas special. I do love Downton, and because usually I'm not able to watch the TV because of my noise and light sensitivity even if I can watch a few minutes that'll be a nice treat! I've hinted for series one and two on DVD for Christmas, so I suppose we'll just have to wait and see what Santa brings...
My physio and social worker came back to visit me this morning and it went really well for one very big reason- they really listened and understood what I was saying. They were actually pretty shocked that I'd been told by the doctor that everyone needed to be hard on me and push me beyond my limits. And they also acknowledged that this is all going to take time; it's not going to help me if I'm rushed into doing things, desperate as I am to get better. It felt like such a massive weight off my shoulders; I felt like there was someone to stick up for me and help me beat this rather than assume that if I'm not pushing myself really hard, I don't want to get better. I told them that I'll be going downstairs for Christmas too. They said that they couldn't recommend it, but I think it was one of those 'I won't tell if you don't' situations. In reality, I'm not ready to go down there just yet. I certainly won't be walking down there. But I think Abi (my physio) realised that it'll absolutely make my Christmas if I'm downstairs! Sometimes you have to put your emotional side first. I probably will feel worse physically for doing it, but I'll feel a lot worse emotionally for staying in my room.
I've been smiling an awful lot today though- people have been sending and bringing round presents, and in line with my plan to pace Christmas I've opened a few! Last night my really close friend Dawn came round with her boyfriend, Craig. We swapped presents- she'd really spoilt me! She gave me a gorgeous bubble bath set (which as soon as I'm well enough to have a bath again I'll be using!) and a box set of three Adam Sandler films. I also got some presents through the post this morning which I couldn't resist opening. I just saw it as a reward for doing my physio. One of my friends sent me a sixteen month calendar with loads of positive, motivational sayings in which was really lovely; it's full of nice bright colours and little doodles too so that's gone straight up on my wall! Kat (who runs the AYME Somerset local contact group and who went to college with me) sent me a monkey that she'd made out of long stripy socks. He's so cute. I haven't given him a name yet but I'm thinking of one! He's very ME friendly too- very huggable with nice long arms and legs that I can wrap around my neck. And he's very good for touch sensitivity, so I've finally been getting that hug I've wanted for so long!
We've just found out too that Rob's got a job! He's going to be working with the Virgin Formula 1 team doing the aerodynamics or something like that on their car. I'm so proud of him. He's going to need to move to Banbury for it though, I'll miss him like mad. But I'm so pleased for him.
I'm really looking forward to Christmas. I've made a plan of how I'm going to manage it, pacing everything out so that I can enjoy it as much as possible. I'm going to try and manage without my carers on Christmas Day and Boxing Day too; obviously it's their Christmas too, so they've probably got better things to do than come and sort me out. And I also have every intention of going downstairs still (more about that in a minute) so I won't need them to bring up my medication and other things like that. I'm really looking forward to just doing 'normal' things like eating downstairs so so much. It feels like an absolute age ago that I was doing those sorts of things, so it'll be really special! It might sound really sad, but I'm really looking forward to watching the Downton Abbey Christmas special. I do love Downton, and because usually I'm not able to watch the TV because of my noise and light sensitivity even if I can watch a few minutes that'll be a nice treat! I've hinted for series one and two on DVD for Christmas, so I suppose we'll just have to wait and see what Santa brings...
My physio and social worker came back to visit me this morning and it went really well for one very big reason- they really listened and understood what I was saying. They were actually pretty shocked that I'd been told by the doctor that everyone needed to be hard on me and push me beyond my limits. And they also acknowledged that this is all going to take time; it's not going to help me if I'm rushed into doing things, desperate as I am to get better. It felt like such a massive weight off my shoulders; I felt like there was someone to stick up for me and help me beat this rather than assume that if I'm not pushing myself really hard, I don't want to get better. I told them that I'll be going downstairs for Christmas too. They said that they couldn't recommend it, but I think it was one of those 'I won't tell if you don't' situations. In reality, I'm not ready to go down there just yet. I certainly won't be walking down there. But I think Abi (my physio) realised that it'll absolutely make my Christmas if I'm downstairs! Sometimes you have to put your emotional side first. I probably will feel worse physically for doing it, but I'll feel a lot worse emotionally for staying in my room.
I've been smiling an awful lot today though- people have been sending and bringing round presents, and in line with my plan to pace Christmas I've opened a few! Last night my really close friend Dawn came round with her boyfriend, Craig. We swapped presents- she'd really spoilt me! She gave me a gorgeous bubble bath set (which as soon as I'm well enough to have a bath again I'll be using!) and a box set of three Adam Sandler films. I also got some presents through the post this morning which I couldn't resist opening. I just saw it as a reward for doing my physio. One of my friends sent me a sixteen month calendar with loads of positive, motivational sayings in which was really lovely; it's full of nice bright colours and little doodles too so that's gone straight up on my wall! Kat (who runs the AYME Somerset local contact group and who went to college with me) sent me a monkey that she'd made out of long stripy socks. He's so cute. I haven't given him a name yet but I'm thinking of one! He's very ME friendly too- very huggable with nice long arms and legs that I can wrap around my neck. And he's very good for touch sensitivity, so I've finally been getting that hug I've wanted for so long!
We've just found out too that Rob's got a job! He's going to be working with the Virgin Formula 1 team doing the aerodynamics or something like that on their car. I'm so proud of him. He's going to need to move to Banbury for it though, I'll miss him like mad. But I'm so pleased for him.
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