I hate that people make assumptions... I know it's hypocritical of me because I know I do it all the time and it's a human trait, but grrrr.. it does make me mad..

This week hasn't been a good week for me - after a long reprieve, many of my old ME/CFS symptoms came back and I was forced to stay at home and rest and not move a muscle. Now don't get me wrong, I like sitting at home and doing nothing, but only when it's out of choice. When I can't move because it's too damn painful, that's a whole 'nother story. Anyway, the point is, a lot of newer friends and acquaintances don't know anything about my ME. I haven't told them because
1. I don't want to be a victim
2. It takes too damn long to explain and, afterwards, people still don't really get it (until they can see for themselves, or they just 'forget' about it, because they're not symptoms you see 24/7)
3. I'm generally a lot better nowadays and I have more energy and spend less time sick, although I still have to make sure I rest lots and don't overdo it.

Anyway, I know my body, and I know when it needs to rest, otherwise I risk facing another relapse. So when my symptoms get towards middling to heavy, I am forced to decline invitations just so that I can help my body recover. Don't get me wrong, I still do take up many of them, and I do lead a fairly active social life. But, to someone who doesn't know I have ME, they more often than not make the assumption that I'm just dull and/or quite antisocial. Neither is true.

It annoys me to know that's what people think, and to snub me for it, when I know that it's my own fault for not telling them. So why don't I tell them? I know from past experience that people still don't/won't understand. When I say I'm tired, they'll say, "so what? So am I". Whilst that's all well and good, an ME sufferer saying they're tired is a lot lot worse than a 'normal' person's tiredness. Humans are generally of the mentality that we can keep going for a little longer than after the point our bodies tell us to stop (i.e. marathon running, eating) but, with ME sufferers, the opposite is the case. My body may tell me right this minute that I'm okay and that I'll be okay for the rest of the night but, an hour later, all might be very different, and I may feel sick to the stomach with overwhelming fatigue/muscle aches/spinning head. Even friends who know about the ME still say to me "Why can't you come out tonight? You were fine yesterday/this afternoon." It annoys me because they think I'm making excuses, using the ME as a get-out clause. Well, I'm not.

So, the bottom line is that I would rather people assume that I'm dull and antisocial, than let them think I use ME as an excuse or have them feel sorry for me. I don't know which of those is worse. It doesn't feel fair, somehow. Grrr..

Whinge over. How are you? Long time no see xxxxxxxxxxxxxxxxxx

I'm having a really bad day. The tiredness and pain of CFS/ME is really starting to get to me. This morning, I could barely walk because my hips ache and throb with every step and it feels like someone has replaced my blood with concrete whilst I was sleeping. And energy? Just the simple act of putting clothes on made me hyperventilate with exhaustion.

I know I must keep positive, I know I must keep active so that all the progress I've made with pacing therapy these last few months don't come to nothing, so that I don't end up back at square one. I know I should count my blessings, that I don't have symptoms as bad as some people get, that I'm still able to get around without falling into a tired stupor. Somedays though, I'm so tired and this is one big uphill struggle. I just want to lay my head down and make the pain and the tiredness go away. I don't want to have to fight to be normal anymore.

At the end of last year, after refusing for more than a year to take medication for CFS, I finally got to a point where I was just too tired and too ill and knew that I couldn't keep fighting the disease with mere positivity and determination. One tiny blue pill every night was all it took for me to suddenly feel like I was back in the land of the living. If I had been religious, I would have gotten down on my hands and knees and praised the lord. I'm so glad I gave in because, you know what, it's alright to admit defeat.

With the help of that miracle tablet, I suddenly had my life back. I could go shopping without falling down half dead afterwards. I could go for long walks. I could go dancing. Of course, it wasn't all roses. I certainly still had bad days, still had to take it easy more often than not, but it wasn't half as bad as it was before. However, this month, the effect of the pills have started to wane, and, now, I feel like I did before I started taking them.

It's been the best 2/3 months I've had since I started to get ill with CFS, and just when I was starting to feel like I would finally overcome the disease, I feel like I'm back where I started. It's so spirit-breaking. There may be other medications, there may be other treatments that would help, but right now, I'm just exhausted and I don't want to keep fighting. It's just one big never-ending battle, and I've forgotten the reason why we went to war.

I know I’ve neglected my blog of late, sorry little blog. I miss blogging, but I’ve been having a bad patch in terms of energy with the ME/CFS lately, especially with concentration, and I have to choose between work and play.

My ‘bad patches’, better known as relapses, aren’t as bad as they used to be. Since I’ve been attending the CFS course at the hospital, I’ve implemented lots of little changes in everyday life, such as daily exercises. Now I know how to recognise and manage my symptoms better, my bad patches aren’t a complete ‘crash’, i.e. I’m not holed up in bed for 2 weeks. I’m still in pain, exhausted, tired and all the rest, but life can still go on, albeit more slowly, which is a blessing. That’s the idea of pacing therapy – knowing how to stabilise the peaks and troughs of energy, so that the lows aren’t as low. Does that make sense?

Anyway, I didn’t mean to warble on, but I just wanted to blog something, however small, so that my little blog, and all you lovely bloggers, know that I haven’t forgotten you. I had a lovely birthday 2 weekends ago, and I shall try and post photos soon. Thanks for all your birthday messages though, they put a great big smile on my face :D see?

Hope you’re all well, I shall be back soon.

Love Pandy
xxxxxxxxx

Last week was a good week for me, in terms of managing my ME/CFS symptoms and energy levels. I felt almost normal at times, which is quite a big thing for me, considering. If I could only identify what it is that I've been doing differently to cause this change, I could recover from this thing. I've had a couple of sessions of pacing therapy at a CFS clinic, and I wish I could say I understood how to apply it to my everyday life, but so far, it's not proving that easy. I am trying to keep an open mind though, and we'll see how it goes!

Making changes to daily life isn't easy, I understand that, but I encountered someone at the group who is so resistant to making any changes at all that I don't see why they bother to turn up. This person seems to blame everything wrong in their life on ME/CFS, AND tries to encourage others to think the same way. Honestly - scared of the dark? It must be ME. Got a fear of water? ME. I think this person needs life coaching more than pacing therapy. They've already said "My ME is obviously so much worse than everyone elses here. This isn't going to work, and I've already told the Dr so." I wish they'd just take the negativity home with them. Don't let the door hit you on the arse on your way out.

In other news, I went here this weekend. I took my dad as a birthday treat. Lionel was brilliant! :D Even my daddy was dancing and singing along! We enjoyed it hugely, and if you ever get the chance to see Mr Richie in concert, go for it! It'll be worth it :)

I went to quite a few shows last month actually, which I still haven't managed to blog about. I think the best of the lot was the very eccentric Blue Man Group, which was both so funny and so much fun. If you've been, you'll understand why - if you haven't, go! I have honestly never seen so much loo roll in one place... A taste of their antics here.

In the runner-up spot, the revival of the comedic play, Boeing Boeing. I suspect it was the big names in here that made the show popular second time around - Michelle Gomez (Green wing), Frances de la Tour and Tamsin Outhwaite, but the show was a hoot from start to finish. I'd recommend not buying balcony seats though - you're so high up that you get neck ache from peering downwards, not to mention vertigo!

Treats - received much publicity recently, starring Billie Piper, Kris Marshall and Laurence Fox. Its had a mixed reception. I thought each actor was brilliant - but when the actors came on stage for their final bow, I thought we were halfway through a scene, and I was waiting for the storyline to emerge! It was all a bit pointless, really. Billie Piper did a crying scene which lasted about five minutes in total - just her sobbing away on stage - it was well-acted, but again, all a bit pointless.

Proof , which played at the Arts theatre for four weeks only, was powerfully emotional and just superb. I'm not sure which came first - the play, or the movie (with Gwyneth Paltrow, Anthony Hopkins & Jake Gyllenhaal), but this was brilliant. I'm not normally a big fan of serious plays, but this one was so brilliantly acted by all involved that it even had me (and half the audience) in tears at one point. I think it's returned to Broadway now, unfortunately! I'm planning on watching the movie next, I wonder if any of you have seen it, and if it was any good?

I'm also going to see Jump tonight! You might remember seeing the Korean martial arts group on the Royal Variety show in December. It has been described as 'A highly entertaining mix of slapstick, gymnastics and martial arts'. I'm quite looking forward to it :) I'll let you know if it's any good!

Hope you're all well! xx

I've been struggling lately, really struggling, with the ME/CFS. It's not so much the physical symptoms themselves, but the way they affect me psychologically when I'm feeling really low. Sometimes, I'm so physically weak that I feel utterly helpless, unable to do anything at all, unable to get my mind to work properly. That's when it feels like all the hope in the world has gone, and I'm battling against a current that's pulling me deeper and deeper underwater, until I can't see the daylight anymore.

I have cried many times this week. When I called in sick to work yesterday, I suddenly realised that even if I never went back, no one would miss me at all. I'm not needed for anything, no one depends on me. And not just at work either, but in real life too.

I thought about how nice it would be to have a job that I loved doing - they say that if you find a job you love, you'll never have to work again - and how much of a failure I feel, having settled for a job that doesn't challenge or excite me, where I'm not learning anything new or having to really think or use any of my skills. That's who I am, I need to be challenged.

Then I thought about finding a new job. But it's not that simple. I feel like I'm in a catch-22; In this job, I can work from home when I need to, and I have needed to. How would I cope in a new job, and who would hire a sickly person?

It's funny, because before this week, I had had a noticable improvement in my symptoms for about a month, and I was feeling happier, healthier, more energised. I was thinking that maybe, just maybe, I was on my way to recovery. The Chronic Fatigue clinic sent me a questionnaire to fill in, about the state of my mental health, and it was full of questions like, 'Do you often feel hopeless'? 'Do you often feel terribly alone and isolated?' 'Do you often feel like crying'?. I answered either 'not at all' or 'only occasionally'. This week, things have changed so much, and my answers would be yes to all.

Maybe it's just a bad patch, but this is the first time in a long time that I have felt this low. The ME has sucked up all of my confidence and self belief and I am unable to envisage a positive future anymore. All things considered, I'm a lucky girl - I have a job, I don't have money worries, I have some good friends. It's just that sometimes it feels like I can't talk to anyone about it, because they won't understand. I know should just pull myself together, but I seem to be incapable of it.

Oh dear, looking back at this entry, I don't know if I should post it. It just seems like I want attention and pity, and that's the reason why I don't talk to anyone about my ME anymore. I'm just so tired of bottling it up, for fear of people not understanding and not wanting to spoil the mood. Sometimes though, you just need to vent, and have someone stroke your hair and tell you that it'll all be okay.

I'm going back to bed now.

I haven’t been around a great deal recently, because I’ve been feeling quite awful lately, especially these last few days.

I had blood taken yesterday, so they can try and figure out what’s wrong with me. The nurse was a mean, heavy-handed woman who hurt me a lot and got blood all down my arm :,(

I’ve had so many recurrent infections/colds/viruses/throat infections, pretty much since I was 11, but recently it’s gotten ridiculous. And after each bout of illness, I feel horribly achy in every single one of my muscles (even on my skin), overwhelmingly exhausted, dizzy, tired, fuzzy-headed, sensitivity to changing temperature, my joints ache, and my mood swings are terrible. Most people recover from a sore throat within a few days – my record is 3 and a half weeks of feeling terrible. To be honest, I’d just put all of this down to having a weaker immune than most, but at 23 years old, can it really be that bad??

It’s been worrying me for a while but after this recent bout of symptoms (this time appearing suddenly out of nowhere), I can’t accept that it’s just because I have a fragile immune system, and decided to have something done about it. I don’t want to speculate on what could be causing this, but it’s so hard not to. It’ll be such a relief if they find something, but at the same time, I hate thinking that there could be something wrong. I’m kinda scared! Fingers crossed for my test results now :s

Sorry to have turned this into a hypochondriacal rant – it was never meant to be! On a brighter note, I have finally finished my editing training and have started editing! Yay!