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!

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!

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.

Operation Christmas!

So it's less than a week until Christmas now. I have been gradually been getting more and more into the festive spirit, but this weekend I took the whole Christmas thing up a gear...

On Saturday, Rob and I spent a lot of time wrapping presents. It was exhausting but one of those tasks that needed doing! We made it fun though by putting on some cheesy Christmas music and having a box of chocolates open to keep us going. I wasn't able to physically wrap the presents myself (Rob did that for me) but I managed to organise them all and label them; it felt really good to be able to have a hand in it. When you've got ME, you can often feel quite frustrated that you aren't able to get involved with the 'normal' little jobs in life. And sometimes other people with the best will in the world don't give you the chance to do those things in case it tires you out too much. I completely understand their thinking though, I'd probably be the same! Maybe it's because Rob knows me so well but he always makes sure that when there's something going on, I'm involved in some way too.

My sister came home from university for the holidays yesterday too. It was lovely to see her although I felt pretty embarrassed about how much I've deteriorated since seeing her last. I don't know if she felt embarrassed too because I haven't seen a lot of her yet! Anyway, last night my mum, dad and sister decided that it was going to be the annual putting up of the Christmas tree. I absolutely LOVE doing this every year. We have the Christmas music blaring out and all four of us (five since Rob's got involved too) have a really lovely evening bringing in the tree from the garden, making it (and the rest of the house) look really gorgeous and Christmassy and drinking a lot of wine! However there were a lot of tears on my part yesterday evening as obviously being bed bound I couldn't get involved this year. I was really upset, not just because it's one of my favourite nights of the whole year but I was also very angry that here was yet another thing that I was missing out on because of my ME. It always feels very unfair because I obviously didn't ask to get ME in the first place. However, there was no point in sulking about it because there wasn't anything that I could do, and Rob being the absolutely wonderful boyfriend that he is made sure I didn't completely miss out.

As I've mentioned before, there's a competition that AYME are running for SAM's (severely affected members, of which I am one) to have the best decorated Christmas room. I'm getting very competitive over it so Rob decided that last night, what with everything going on, it would be a good night to decorate my room. It was just as lovely as it would have been downstairs- we even had mulled apple juice! When I was about fifteen I bought an artificial Christmas tree which Rob put together for me. I sat in my chair (which in itself is a big thing for me) and covered it in red and gold; there was tinsel, some red cherry lights, glittery star baubles and mini presents which sat on the branches. It looked really gorgeous- very festive! Meanwhile Rob did all the bits that I couldn't do like hang tinsel from my walls, shelves and ceiling and put three more sets of fairy lights up. It looks brilliant now, a bit like Santa's grotto but that's fine with me. Being bed bound can be exceptionally boring, especially if you don't have anything to look at, so now that I have a lot of decorations up it's really lovely!





Unfortunately, I still haven't managed to see Alice, Darren and baby Jake. It's actually making me feel like a pretty rubbish friend to be honest; I feel like I really should be there for Alice especially really. I think Alice knows though that if I was able to, I would have jumped in my car and seen her straight away! I know I've said it before though, but I really do feel blessed to be surrounded by such lovely friends. A lot of people with ME say how they've lost friends due to their illness, but I'm very very lucky as I haven't found that at all. I've actually gained friends! And those friends I had before I'm closer than ever to. They're definitely going to be friends for life; there's no question about that! But seeing Jake is still such a big goal for me and one that I'm determined to reach before he's walking and talking! It often makes me think about things actually. I've come to focus not on the times I've lost, but all the times I still have yet to come that WILL happen. I'm 22, I've still got so much to look forward to- I might have severe ME but I'm not giving up just yet!

To push or not to push?

I've set myself a goal. Well, actually, maybe not a goal. It's more of a definite statement. I will be spending Christmas Day downstairs.

It might sound a bit trivial really but it's really important to me. The best Christmas present for me will be doing something that's completely normal; being with everyone else at Christmas, not stuck in my bed like every other day. I know full well that there's going to be no easy way of getting down there, considering that the only way I've got down and up so far is to be carried by an ambulance crew! I've inevitably had a relapse from the drama of the pain clinic and collapsing in the week. I can stand for about fifty seconds a day supported if I spread it out over the day. However I don't care if I have to be dragged down and up those stairs; I am definitely going down there! The photo is of me last Christmas when I wasn't bed bound, I wasn't even housebound and I had a really good Christmas. I'm determined that I'm going to have just as good a Christmas this year. I'm going to fight very hard for it. But in order to get downstairs, I'm going to really have to pace myself and not do too much in the run up to the big day. And that's going to be the hardest part of it.

As an ME sufferer you have to fight. There are no two ways about it unfortunately. First of all there's the most obvious; you have to fight to get better. You have to try and fight the hell that is going on inside your body. You have to fight through all the low moments that you may have when you realise just how much you've lost (the saying 'you don't know what you've got till it's gone' is definitely a very true one indeed). You have to fight to focus on not what you've lost, but also everything that you still have and have possibly even gained. I mean, I've made a lot of new friends from going through this. AYME is just fantastic. However, you also have to fight to be heard. You have to fight to be believed. You have to fight to be understood. This is something that I'm experiencing right now, and it's nobody I'm pointing a finger at in particular. It's just a build up of experiences recently that have made me feel the way I am.

There is a big problem with ME and disbelief. Disbelief that ME is a physical illness, or that you even have it at all, and disbelief that you are trying your very best to get better. Again, I think it all comes down to the fact that it's a completely invisible illness. It feels a lot like there is a massive focus on pushing yourself to your absolute limit and not leaving yourself with any energy for your body to heal itself. The problem is, I find, that if you try and explain that you can't do something, that you really can't push yourself, people see that as 'you don't want to get better'. It's heartbreaking really, because I know I am trying my absolute best but it seems to be going unnoticed. Not by everyone, as I've said before Rob and my friends are truly amazing. But there's the guidance from the doctors, some of those nurses in hospital (that, let's just remember, don't have ME themselves) who think that to get better you just need to exercise more. The thing about ME is that you get payback, as I've mentioned in another post. Pushing yourself too far brings on that payback; the physio and the ME clinic both emphasised to me how important it is to stick within your energy levels. Because if you don't, you make yourself worse and then you don't have the energy for things that you want to do like go downstairs for Christmas. But it feels like by listening to your body you're being awkward to everyone else, you're making a fuss and not wanting to get better. And when you say you've reached your limit, or that you can't keep forcing yourself beyond what you can do, or that you can't do as much today as you did yesterday, nobody is listening.

One reason why I got on so well with Ali (my favourite nurse in hospital) was that she let me do things in my own time and she let me tell her when I'd had enough. She knew I was trying my best, it certainly seemed that way anyway, and she didn't rush me to do things either. She understood that I needed to save energy just for things like eating and letting my body heal itself. She let me save energy for things I enjoyed like visitors and going to the cafe for a cup of tea. And she acknowledged that I was trying really hard too and actually made me feel like I'd achieved something! She listened to the goals that the physio had set me, unlike some of the other nurses; I was only supposed to be sat up for thirty minutes at a time, but to make me push myself they left me sat up for hours! So inevitably that made me feel a LOT worse; if I'd have been allowed to keep within those goals and my energy levels then maybe I would have managed to walk a bit further the next day or had a bit more energy. I don't think they were doing it to be mean at all, but the point I'm trying to make from all this is that there's such a big lack of knowledge about ME in the medical profession and that makes it really difficult for those of us with it. I know that they were just doing what they'd been taught, what they felt their job was to do, but it felt like a lot of people thought my problem was psychological and that by pushing myself I was 'getting over it'. And I think that attitude has lasted. People are telling me that they are going to be hard on me and make me do things; it almost feels like I'm being punished for being ill!

I've been told many times, and I know it's true, that if you don't do anything then your muscles will go to waste. I completely get that. But at the same time, I think people forget that I have got ME and that my energy levels are in VERY short supply. And a lot of my muscle weakness is caused by the ME in the first place; pushing myself beyond my limits is only going to make that worse and then I'll never get anywhere! And that's the thing that I've tried to keep explaining but nobody seems to want to hear it.

The one thing I've found really helps me though is talking to other ME sufferers because a lot of them feel the same as I do. And it's nice to be able to support others too, not just be the one being supported all the time. I know this seems a bit of a negative post but there are some real positives that are coming from all this. Some that I'm really hanging on to are those really special friendships with people from AYME and of course my other friends too. I know that all this is going to make me a much stronger person at the end of it and that can only be a good thing! And I just want to make other people aware of what it's like so that for someone in the future, hopefully, peoples' attitudes towards ME might be a bit different. As they say, every cloud has a silver lining!

Anyway, now I've got that one off my chest it's time to get excited about Christmas again. I've got a lot of presents to wrap; it's too much for me to do them all myself so Rob's staying tonight to give me a hand (although I'm not sure if he knows that bit yet)! I'm slightly worried though, as I ordered Rob's present ages ago but it still hasn't arrived... as long as it gets here by Christmas, I don't mind! I've been having A LOT of fun on the iPad too. It's brilliant. I think I DEFINITELY know what I'd like for Christmas now!

The good, the bad and the iPad.

Well it's been pretty eventful since I last posted to say the least! Whilst things haven't exactly gone to plan, there have been some positives too. I think I'll start on a happy note.

I am seriously proud of Rob. He's done so well this week. Since finishing university he's been trying his best to find a job. He's had a few interviews and almost got there, but has just missed out despite his very best efforts. He's been applying like mad to EVERYWHERE since and was offered a lot of interviews for this week! So he was interviewed on Monday, Tuesday, Wednesday and yesterday for three different jobs; some in London and some in Bristol (which is about an hour away from where we live). And the good news is that they all went really well! He thinks he's got a couple, if not all of them in the bag which is absolutely fantastic. He's found out today that he's got an interview next week for a Formula 1 team! I can't tell you how excited he was about that- aside from being a pilot, that's possibly his dream job.

Of course the thing that's really amazing in all this is that despite having an incredibly busy week, he's still been round to see me every day. And that's something that truly reminds me how lucky I am to have him; he is showing so much support towards me. I'm so pleased that he's got on with sorting his life out too as well as being there for me though. I often feel very guilty that my ME causes him to do so much for me; I've always been keen that just because I'm not having much of a life at the moment, that doesn't mean that his should stop too. He still goes out with our friends and enjoys himself which I'm so pleased about. And even though he's been round a lot this week I'm really glad that he's been sorting his career out too. It's been great actually, seeing him all dressed up in a suit! He scrubs up pretty well! I've put a picture up for you to see- it was taken at my undergraduate graduation in 2010 (so even though I missed my PGCE one, at least I have had the whole graduation experience).

Rob's mum, Janet, has also been a real source of strength for me. On Wednesday she went with me to the pain clinic. I was actually stupidly excited to be going out, even if it was to the hospital! When my carer came in that morning I told her that I wanted to get dressed up- it felt like a really big day for me. I couldn't wear my jeans because of my touch sensitivity; they're just too painful. So I wore my pink SoulCal trackie bottoms, a thin white Hollister hoodie, a body warmer and a white woolly hat (it was pretty cold!) So whilst I looked like I was going skiing, I felt really comfy but actually very dressed up. As I put my boots on though I realised that it had actually been two months since I'd last worn shoes! It's strange, in some ways I'm so used to being bed bound with ME that I kind of forget that I have it, but it's little things like that which just remind me of what my situation is really like at the moment.

I was hoping that the ambulance men who carried me down (and up) the stairs and took me to and from the hospital would be fairly good looking. However that wasn't the case unfortunately! I suppose in some ways it was a good thing; had they have been, I would probably have been even more embarrassed that they were having to carry me down the stairs, pile me into my wheelchair and stick me in the back of the ambulance. Janet followed in the car and met me in the waiting room of the pain clinic. I'm afraid I can't actually tell you a lot about my appointment! One of my symptoms is what's called 'brain fog'. It means that I often really struggle to find words, get confused a lot and I have a shocking memory. So I can't remember what happened or what was said; I'm guessing it went well though.

I was really looking forward to seeing Alice, Darren and baby Jake. But for one reason or another unfortunately that didn't happen. I wasn't just disappointed, I was majorly GUTTED. I don't know when I'll be able to leave my room again; I can't exactly call an ambulance to take me down and up the stairs to see them. This is what I really hate about having ME; my life is so restricted and it seems like the whole world is moving on whilst I'm stuck in my bed unable to move with it. It's not pleasant. But it can only mean that when I am more able to do things I'm REALLY going to appreciate it! It actually turned out to be a good thing that I didn't see Alice though; the payback yesterday from just travelling to the hospital and back and having my appointment (which involved sitting up for quite a while) caused a nasty little relapse. I dread to think what it would have been like if I'd have done any more. I woke up feeling horrendous; my head was spinning so badly and pounding too. I was in an awful lot of pain, very drowsy and my heart was very irregular. I couldn't take any light at all, I was paralysed in my legs and the slightest little noise like Tigger walking into the room made me very jumpy. I knew it was the payback; having ME for so long, you get to know what happens to your body very well. I couldn't really talk to my carer but I had my medication all the same before going back to sleep for a couple of hours. When I woke up, I had a bit of the feeling back in my legs so I assumed the worst had passed. How wrong I was! A very confusing thing about having ME is that people tell you to do different things to get better. Some tell you to really listen to your body, some tell you to push yourself as much as possible. Usually I go for the 'listen to your body' approach but yesterday decided that my body was going to listen to me. So I decided to just have a little walk around my room. I sat up and grabbed my crutches, but before I could stand up I collapsed and fell flat on the floor. I have a panic button to press if something like that happens; luckily I could feel myself about to go and pressed it just in time.

I don't know how long it took me to come round, but what I do know is that I've NEVER felt pain like that before. It was like the usual very severe pain I get, but an awful lot more intense. Not only were my legs paralysed, but my whole body was, all because of the pain. The emergency doctor came as I'd pushed my button. The next thing I was aware of was that two paramedics were in my room; I ended up lying on my bedroom floor being given gas and air for a good two hours. I've only had that stuff once when I was sixteen and had appendicitis. It didn't do a lot for the pain, it only took the edge off, but otherwise it was absolutely wonderful. It made me feel all lovely and floppy and I lost all sense of where I was or what was going on. I wish I could have it more often! They wanted to take me into hospital but I was dead set against the idea; last time I was in there for three weeks, and there's absolutely no way that I'm going to spend Christmas in there. If the pain doesn't settle, I apparently need to get them back out. It hasn't settled yet- I'm feeling very grotty indeed, very faint, and I still have the paralysis AND the pain. But the doctor is apparently coming out later so fingers crossed I can avoid going to hospital.

Yesterday wasn't all bad though! My mum is also a teacher (obviously with much more

experience than me!) and was given an iPad as an experiment; she has it for three months to see how she can use it in the classroom. And luckily for me, my treat after all the drama of the afternoon was to be the one who got to work it out. Having an iPhone I already knew how to use it, so I had a pretty good evening with Rob just playing on it! And I think I now know what I'd like for Christmas... (yes I know I have an iPhone, but it doesn't have a camera on the front and I just love that iPad...)

I'll leave you with a picture of Tigger getting all Christmassy. She absolutely loves playing with tinsel and everything. Mum tied a bauble to the end of my bed and she's been going mad over it! It's very funny; not the best for my noise sensitivity but I'm glad she's having fun. Cleo's been actually having a go with it too!

It's a medical muddle!

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!

He hasn't got ME, but I've got him.

And now for my third post...

I didn't sleep at all well last night so I'm feeling really awful today. My heart was racing, I was in absolute agony all over my body and my breathing was rubbish; it was just so painful and so exhausting and I couldn't breathe properly. I'm really exhausted now and feeling very brain fogged (as in my brain isn't functioning); I actually feel like I'm drunk so do excuse me if this post makes no sense at all, although I have been steadily working at it for the last few days so hopefully it won't be too bad.

I was very excited yesterday as Alice had her baby. She gave birth to a little boy, Jake, at 3:09pm. I can't wait to see him. I can't wait to see them all actually, as the last time I saw Alice and Darren was a couple of weeks ago when they came in to see me in hospital. The question is when really, whether Alice will still be in hospital or not on Wednesday.

One reason why Alice is my best friend is how lovely she's always been, whatever has happened during the six years I've known her, and her reaction to my ME has been no exception. She's always just accepted it and knows that I'm still the same person underneath the illness. She still invites me out to things too which I really appreciate. It's almost a guarantee that I won't be able to go, but it means a lot that she doesn't automatically assume that and still involves me in things. I can imagine that having a friend with something like ME can be very difficult if you don't know how to handle it. You may not know what to say to them, and may feel like you're upsetting them by inviting them out knowing full well that they'll be too poorly. But it makes such a difference as a sufferer to be included in things still, it's nice to know what's going on. And what's lovely is when your friends just get on with it and talk to you in the same way that they always did. It sounds incredibly clichéd, but ME really does show you who your real friends are. I have a lot of amazing friends and for that I feel like the luckiest girl in the world.

A very important friend of course is Rob, my boyfriend. We've been together for four and a half years now. We met at sixth form way back in 2006. We gradually got closer and closer and were really close as friends for quite a long time before we got together. I wasn't sure about going out with him really, he kept at it for four months but I was playing hard to get!

I was worried I suppose that if things didn't work out then it would wreck our friendship. Plus I thought that he would annoy me too much! (It was all in good humour though!) We finally got together in 2007, on the verge of going to university. He went to Brunel University in London, and I went to UWE in Bristol. Obviously there was about 100 miles between us and some people assumed that we wouldn't last. But it just felt right really, making it work; obviously we had to put in a lot of effort to see each other and everything but it never felt like a big effort, it just felt like the natural thing to do. We have a very strong relationship now and we're really comfortable with each other. He's very cheeky and mischievous and I LOVE being stupid and messing around, so we have a lot of fun and a lot of banter! The photo is of Rob and I at my 21st birthday party in 2010 when my ME was mild. I had a children's party and we all dressed up; Rob and his flatmates came as Thunderbirds which was really hilarious.

Rob's been brilliant with my illness. He obviously doesn't have it himself but has tried his absolute best to understand it and how I'm experiencing it. I think if I was him I'd be really annoyed at me right now; I'm very often in unbearable pain and crying at him an awful lot. And being so tired all the time I can get really grumpy and he usually ends up as the one to put up with it! I have very bad touch sensitivity so we have no kind of physical relationship; I haven't even been able to give him a hug for months! And because I'm bed-bound I can't just get in the car and drive to his (he lives about 10 miles away), he has to always drive to see me. And petrol really isn't cheap these days!

Before I had my carers Rob was my main carer and did everything for me. He never moaned about it- well he did in a jokey way, but never meant it. He actually said he liked looking after me. I will always be SO grateful to him; he's just been there and has supported me so much, more than I'd ever imagined anyone could. He motivates me to keep going, to keep smiling, and when I'm finding it hard to smile he can have me in fits of giggles within minutes. I really can't describe just how lucky I feel to have him around!

Anyway, do excuse me- rest time is desperately overdue!

Christmas decorations, a new baby and a cat called Tigger...

So the last post, despite being written over a few days, completely knackered me out. Oops...

We've got two cats at home, Tigger and Cleo (whose name technically is Cleopatra, but we hated that so shortened it). When we first got them the RSPCA told us that they were sisters and that they were four years old. WRONG! When we last took them to the vet for their boosters/ check-ups, he told us that Cleo is actually about fourteen and is most likely Tigger's mum. But they're both perfectly happy and healthy. Cleo used to be really shy at first but now she's full of it; she loves attention and will follow you around wherever you go. Tigger also loves attention, but a bit too much. She is ALWAYS on my bed which I really don't mind- I actually love it. But there are times that I wonder if a wet nose wiping itself around my face is really necessary at four in the morning.

The other thing about Tigger is that she is very, very fat (she's the one lying down by the way). She had a weight problem when we got them and we assumed that she'd been overfed in her last home. But it turned out that Tigger, being the more dominant one, was eating all of Cleo's food. She still does it and we've tried everything, from locking Tigger upstairs and letting Cleo eat first, to feeding them at different times, to putting their bowls in two separate places. None of it's worked; Cleo doesn't want it straight away and Tigger gets angry at being away from it.

I do love having my two cats though. ME is a very isolating illness; I'm basically hidden away upstairs in my bed ALL day and everyone's out at work or whatever, so even though I have carers in three times a day it can be really lonely. So Tigger and Cleo are pretty good company really, and they're very loyal.

I also spend time, when I'm able to tolerate it, on Facebook. I absolutely LOVE it; it makes it so easy to keep in touch with people, especially because I haven't got the energy to tell people the same thing over and over again separately. I can also still get all the latest gossip that I wouldn't get otherwise! Anyway, my best friend Alice is about to have a baby and is supposed to be induced on Monday. But she announced on Facebook this morning that she's on the way to giving birth right now, and I'm so excited! I'm supposed to be going to the pain clinic at the hospital on Wednesday; it's going to be interesting getting there to say the least as a team of people are coming to carry me downstairs and into the car, and travelling in itself makes me really ill. The person from the pain clinic won't come to me, they wouldn't even visit me on the ward for my last appointment, so I kind of have no choice. But I'll try and pop over if Alice is still there. One very hard part of ME is that you miss out on so much. I haven't been to a meet up with all our friends for months now- I've even had to miss my own graduation. So to go to see the new baby would be a very very special thing indeed. We'll have to see how it goes, because obviously the journey to/ from the hospital and my appointment will tire me out enough. But seeing the baby will definitely be worth the payback.

A good while ago now I joined a charity called AYME- Association of Young People with ME. It's such an amazing charity; to say they've been a big source of support is an understatement. There are lots of people under 26 there who all have ME and I've made some very close friends, a lot of whom I text and have on Facebook. One lovely person also lives in Taunton

and came to see me twice in hospital. That was really nice because I could talk about all the problems I was having and she understood. I mean she REALLY understood. I think one thing that brings us all together is the fact that we do all understand exactly where each other is coming from. It's one of those illnesses that to truly understand what it feels like you have to have been there yourself. That's not to say of course that all we talk about is our ME- far from it! We talk about literally anything, from what's on TV to trying to talk to each other in the third person (that's always hilarious)! They are such a fantastic bunch of people, truly inspirational and I have a lot of time for them.

If you're a severely affected member, as I am, you're known as a 'SAM'. You can join the SAMs database and get all sorts of special services; a pen pal who writes every two weeks but doesn't expect you to reply, email updates when you're too poorly too see what generally has been going on with everyone, birthday and Christmas cards, a teddy bear made by someone who's not severe and a special SAMs newsletter sent out to you, along with many other things. In the newsletter I got a few days ago, Rob told me that they're running a competition for the SAM who has the best decorated Christmassy bedroom. Obviously being bed-bound I spend a LOT of time in my room so of course I'm going to enter it! Rob's mum went and got me some gorgeous pink tinsel to start me off which Rob's put up around my bed. I'm getting VERY competitive on this one! (I think I might have a bit too much time on my hands!?)

I'd probably better start writing!

Well I've had this thing set up for an absolute age but haven't ever got round to writing in it. Today's probably a good time to start.

Today isn't such a bad day really. It's actually pretty good. I say 'good' in a relative sense- to you, a good day might be running around a theme park, or going to the gym, going out for lunch and then seeing friends all evening. For me a good day is being able to walk a couple of meters (with crutches or a walking frame) to the bathroom next to my room, brushing my teeth- all under the supervision of my carers who come in three times a day, and being able to go on my laptop whilst lying in bed. At first I'd get so frustrated at how a 'good' day might not be seen as 'good' at all but I've learnt to go with it. It'll be different one day, hopefully before too long.

I was recently in hospital for three weeks and it was the most depressing three weeks ever. The problem with ME is that it's completely invisible, I mean you don't even look ill with it, so I think it's quite hard for people to really take you seriously. So I think some of the staff thought I could do a lot more than I could and I was told on many occasions that it was a 'confidence issue' and that I just had to put 'mind over matter'. All very easy for them to say. It felt like some of them thought I was putting all this on- I mean why would anyone ever make something like this up? It seemed they thought that I wasn't trying hard enough to get better, that I

was just being lazy- even that I didn't want to get better. It turned into a bit of a battle really, trying to justify myself and that was exhausting enough. I'm not really saying it was their fault. ME is such a misunderstood condition that people are bound to have their views on it and I suppose it must be very difficult to keep those views quiet. But as the one suffering I know that I was doing my absolute best. When I said I couldn't do something, it was literally because I really didn't feel that my body was going to let me. And the thing about ME too is that it's a very unforgiving illness- you push it that little bit too far and for days afterwards you go through hell. So it's all very well to tell me to push myself and if I do it to tell me that, see, I can do it and that it's all about confidence, but until you have felt that extreme payback after doing something then you can't really understand the true effects of what you're saying.

The other thing is that quite often I think it's seen as a psychological condition, supposedly because physically you don't look ill (even though it's accepted by the World Health Organisation as a physical, neurological illness). All I will say is that anyone who says it's psychological clearly hasn't had it themselves. I'm not depressed, I'm actually pretty happy considering. A psychiatrist saw me in hospital and said that psychologically there was absolutely nothing wrong with me and that my symptoms were all physical. So doesn't that say it all really, if a psychiatrist is telling me that?

Don't get me wrong, I had some wonderful moments in hospital. I made some really good friends on the ward, all a lot older than me- I kind of became the 'baby' of the ward (probably not helped by my baby pink wheelchair). I bonded particularly well with one nurse, Ali; she treated me not like I was being difficult but like a person who was really worth her time. When you're in hospital for such a long time and you have nurses doing literally everything, and I mean everything, for you, you can't help but become attached to someone who you particularly get on with. Anyway, Ali was wonderful. She took a lot of time to chat to me when I was upset, particularly one night when I spent a good half an hour bawling my eyes out to her. But she forgot the ME too and saw me as a real person. She asked me about the photos I had with me. She gave me wheelchair races up and down the ward. Some of the other nurses would grab any old pair of pyjamas for me to change into but she'd get them all out, lay them on my bed and help me choose a pair. When I managed to walk three meters she didn't say 'see, you can do it', but instead told me that she was really proud of me. I can especially remember her waking me up after she'd come back from a few days leave, and just hearing 'morning Louise, my little love, are you going to wake up and see who it is?' It's those kinds of people that really spur me on to get better, not those who tell me it's just confidence and that I should think about the effect on everyone else around me. Because I really can't help it and believe me, NOBODY would choose to be like this.

I've been lucky to have the most fantastic friends and the best boyfriend in the world, Rob. They've just shown so much love towards me; they've forgotten the ME and just cheered me up. Below is a photo of my best friend Alice and me. Oh, and by the way the sunglasses aren't some form of fashion statement- I'm very sensitive to light at the moment. Anyway, Alice and her fiancée Darren came to visit me one Saturday- I think I'd been there about a week or so. I'd meant to have been going to her 23rd birthday party, a princess and fairies evening on the Thursday night, but obviously I'd been in hospital. So I got Rob to bring me in a wand, took a photo with it and sent it to her to tell her that I was there in spirit. She then turned up with another wand, a tiara, a gorgeous card she'd made and that everyone had signed and a party bag which had the most amazing cake in it! And that to me meant the world.

There was also the time that Rob brought me in a Chinese takeaway. That cheered me up massively. And he brought me a pizza a few nights later (suggested by Ali) and got pounced on as he walked through the ward by all the other patients who would have given their right arm for a takeaway pizza. So there were some good times in hospital too; that's what you have to remember about having ME generally really, however bad it gets there are always good times.

Anyway, that's enough rambling from me. I'll wear myself out if I'm not careful! But it's pretty miserable outside, so I suppose in some ways I'm glad I'm stuck in bed- at least it's nice and warm.