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littleangel_103, this video about CFS/ME.
As a kid, I had a lot of tonsillitis. This is an odd illness. Sore throat? Check. Bit tired? Check. Not too bad, eh? Feel I should be able to go do stuff? Nuh-uh. Wobbly legs. Why should a sore throat give me wobbly legs? I have no idea, but it does. And if I do things - especially complicated things, or things involving concentration, I know I'll only have to re-do them because they'll be utterly wrong. I have no tonsils now, but I still occasionally get tonsillitis. Just because. It's a lot better than it used to be, though. I don't bother going to the doctor with it. There's nothing much to be done, anyway.
Only not all sore throats are tonsillitis.
I've been prone to 'post viral fatigue' since I was at university, probably. Not often, and not too severely, usually. Just every now and again, I pick up a something-and-nothing of a virus, and when it goes, I'm left exhausted for a week. The worst bout I had was after the first time I split up with my last ex, and I got sent home from work and told not to come back for at least a week, because I was staggering in each morning, sleeping at my desk at lunchtime, then staggering home at tea-time and sleeping through until the next morning.
Then I split up with my ex again, this time for good. It was 2003. I bought a house, came down with a bit of a sore throat, moved in on Halloween - and by the time I thought to go see the doctor, it was about 5 weeks later. And it turns out, I had - in all probablity: it was too late to get a reliable test result - glandular fever instead.
I spent 6 months asleep.
At the worst, I would wake up at 1pm, and by 5pm be desperate to go back to bed.
I could tell I wasn't thinking clearly. It felt as though I had a brain full of cotton-wool.
I don't actually have too many memories of those 6 months. It turns out that CFS - Chronic Fatigue Syndrome - has short-term memory effects, in addition to many other things.
IBS runs in my family, as does a mild lactose and wheat intolerance. That's worse, now, and I've pretty much given up wheat and dairy altogether.
I can't actually describe how utterly, bone-crushingly tired I was. All the time. I'm a writer, but I don't have the words for it.
I couldn't deal with phonecalls, post, the house and garden. I occasionally staggered into work, having slept on the train down, only to do very little which was productive. Then I'd leave early, stagger home and sleep all the way back up. I had 90 days off in 130 days, and I had to fight to get in at all. My bosses asked if I needed counselling, thinking I had depression. I was down, yes, but not actual depression. I walked down the short hall to the kitchen, one time, and my boss asked me why I was walking oddly. I had to tell him it was because I was too tired to lift my feet properly.
I didn't get fired. Fortunately. My older sister - deputy head of finance for a council - told me she'd have fired me. My twin - who was HR for a multi-national company agreed.
I know my friends love me, and I had a new relationship with my now husband. But I felt isolated. I didn't feel as though anyone understood what I was going through, and I couldn't talk about it because the effort of speaking was simply too great.
Now, those of you who know me know I'm usually insanely busy dashing about doing a billion and one things. Far too much to do, and far too little time to do it in. Try and pin me down to a date to meet up? Better plan 3 months ahead.
And this I put down to starting climbing. I owe a debt there I'll never be able to repay, to James, Elaine,medains. To Chris at work, and to john_the_hat. Climbing built up my stamina bit by bit, until I could make it to the top of a climbing wall without having to rest several times. Until I could make it through the day at work without having to leave early.
Mostly, I'm fine.
I still work 9:30-4:30, though. Over the past few days I've done a couple of 8:30-5:30s, and I'll probably be pulling a couple of earlies/lates this week. But through the weekend I found it very hard to get going. On Saturday I spent a lot of time sitting.- in the City Screen bar, in VJs, back in the City Screen, at home. I wasn't up to going places and doing things. On Sunday I had a slow start, did stuff in the afternoon, then had a fairly brain-dead (but nice) evening. I didn't get work done at home as I'd planned.
I had another bout of CFS last November, I think it was.alasdair1076 saw me a few times, and can vouch for the difference it makes. In some ways, I supect it's like being stoned - that delay in responding to anything; the lack of ability to talk about anything much and certainly not in detail or at length.
So I'm not cured. I'm recovered. Mostly. But my immune system still isn't right. I'm not a person for allergies, but I get cramps if I have dairy. I get grumpy and tired and bloat up a dress-size if I eat wheat. I'd probably be a bit better if I slept a couple of hours more a day. But then I'd get even less done! So I'm still pushing myself, still trying to fit in too much, see too many people in too many cities.
It's hard.
I love you guys. You're awesome. You make me the richest, luckiest, most blessed woman in the world. And I'm well aware of how little I see most of you. How little I'm in any form of contact with you. I'm amazed and incredibly grateful that you are happy to pick up where we left off last time, on the occasions I do see you. You put up with me not answering phonecalls, returning texts, replying to emails. You love me and you accept me as I am, and that is a gift beyond measure.
I still have problems dealing with phone calls and post. I'm better with emails than I was. Text messages are hit or miss.
I need my diary. My short term memory is fantastic for some things, but not for dates. I make up numbers. I have problems managing my money (not helped by never having any).
I still avoid issues, hide from the world, sit down and read fanfic when I should be working.
I find it hard to deal with 'official' stuff. I still have to sort out getting my passport and drivers licence changed into my new name, to say nothing of banks, building societies, utilities, etc etc.
But.
I wrote 32,000 words in 2 weeks, and it was easy, and damn! it's good stuff. Not, yanno, anything great or profound, but for what it is, it's excellent.
I made a medieval outfit from scratch, by hand, with guidance from expert friends.
I'm just finishing up the 3rd year of a dressmaking course at the college.
I have a fantastic relationship with the most wonderful man on the planet, who is my husband.
And when it all gets to be too much - when I come close to collapse again - there's always someone there to help me.
I'm one of the lucky ones. I'll probably always have some remnant of CFS dragging around my system. But I didn't move on to full-blown ME, and for that I am supremely thankful.
Some people aren't so lucky. If you can, please watch the video and pass it along.
littleangel_103, this video about CFS/ME.As a kid, I had a lot of tonsillitis. This is an odd illness. Sore throat? Check. Bit tired? Check. Not too bad, eh? Feel I should be able to go do stuff? Nuh-uh. Wobbly legs. Why should a sore throat give me wobbly legs? I have no idea, but it does. And if I do things - especially complicated things, or things involving concentration, I know I'll only have to re-do them because they'll be utterly wrong. I have no tonsils now, but I still occasionally get tonsillitis. Just because. It's a lot better than it used to be, though. I don't bother going to the doctor with it. There's nothing much to be done, anyway.
Only not all sore throats are tonsillitis.
I've been prone to 'post viral fatigue' since I was at university, probably. Not often, and not too severely, usually. Just every now and again, I pick up a something-and-nothing of a virus, and when it goes, I'm left exhausted for a week. The worst bout I had was after the first time I split up with my last ex, and I got sent home from work and told not to come back for at least a week, because I was staggering in each morning, sleeping at my desk at lunchtime, then staggering home at tea-time and sleeping through until the next morning.
Then I split up with my ex again, this time for good. It was 2003. I bought a house, came down with a bit of a sore throat, moved in on Halloween - and by the time I thought to go see the doctor, it was about 5 weeks later. And it turns out, I had - in all probablity: it was too late to get a reliable test result - glandular fever instead.
I spent 6 months asleep.
At the worst, I would wake up at 1pm, and by 5pm be desperate to go back to bed.
I could tell I wasn't thinking clearly. It felt as though I had a brain full of cotton-wool.
I don't actually have too many memories of those 6 months. It turns out that CFS - Chronic Fatigue Syndrome - has short-term memory effects, in addition to many other things.
IBS runs in my family, as does a mild lactose and wheat intolerance. That's worse, now, and I've pretty much given up wheat and dairy altogether.
I can't actually describe how utterly, bone-crushingly tired I was. All the time. I'm a writer, but I don't have the words for it.
I couldn't deal with phonecalls, post, the house and garden. I occasionally staggered into work, having slept on the train down, only to do very little which was productive. Then I'd leave early, stagger home and sleep all the way back up. I had 90 days off in 130 days, and I had to fight to get in at all. My bosses asked if I needed counselling, thinking I had depression. I was down, yes, but not actual depression. I walked down the short hall to the kitchen, one time, and my boss asked me why I was walking oddly. I had to tell him it was because I was too tired to lift my feet properly.
I didn't get fired. Fortunately. My older sister - deputy head of finance for a council - told me she'd have fired me. My twin - who was HR for a multi-national company agreed.
I know my friends love me, and I had a new relationship with my now husband. But I felt isolated. I didn't feel as though anyone understood what I was going through, and I couldn't talk about it because the effort of speaking was simply too great.
Now, those of you who know me know I'm usually insanely busy dashing about doing a billion and one things. Far too much to do, and far too little time to do it in. Try and pin me down to a date to meet up? Better plan 3 months ahead.
And this I put down to starting climbing. I owe a debt there I'll never be able to repay, to James, Elaine,
medains. To Chris at work, and to john_the_hat. Climbing built up my stamina bit by bit, until I could make it to the top of a climbing wall without having to rest several times. Until I could make it through the day at work without having to leave early. Mostly, I'm fine.
I still work 9:30-4:30, though. Over the past few days I've done a couple of 8:30-5:30s, and I'll probably be pulling a couple of earlies/lates this week. But through the weekend I found it very hard to get going. On Saturday I spent a lot of time sitting.- in the City Screen bar, in VJs, back in the City Screen, at home. I wasn't up to going places and doing things. On Sunday I had a slow start, did stuff in the afternoon, then had a fairly brain-dead (but nice) evening. I didn't get work done at home as I'd planned.
I had another bout of CFS last November, I think it was.
alasdair1076 saw me a few times, and can vouch for the difference it makes. In some ways, I supect it's like being stoned - that delay in responding to anything; the lack of ability to talk about anything much and certainly not in detail or at length.So I'm not cured. I'm recovered. Mostly. But my immune system still isn't right. I'm not a person for allergies, but I get cramps if I have dairy. I get grumpy and tired and bloat up a dress-size if I eat wheat. I'd probably be a bit better if I slept a couple of hours more a day. But then I'd get even less done! So I'm still pushing myself, still trying to fit in too much, see too many people in too many cities.
It's hard.
I love you guys. You're awesome. You make me the richest, luckiest, most blessed woman in the world. And I'm well aware of how little I see most of you. How little I'm in any form of contact with you. I'm amazed and incredibly grateful that you are happy to pick up where we left off last time, on the occasions I do see you. You put up with me not answering phonecalls, returning texts, replying to emails. You love me and you accept me as I am, and that is a gift beyond measure.
I still have problems dealing with phone calls and post. I'm better with emails than I was. Text messages are hit or miss.
I need my diary. My short term memory is fantastic for some things, but not for dates. I make up numbers. I have problems managing my money (not helped by never having any).
I still avoid issues, hide from the world, sit down and read fanfic when I should be working.
I find it hard to deal with 'official' stuff. I still have to sort out getting my passport and drivers licence changed into my new name, to say nothing of banks, building societies, utilities, etc etc.
But.
I wrote 32,000 words in 2 weeks, and it was easy, and damn! it's good stuff. Not, yanno, anything great or profound, but for what it is, it's excellent.
I made a medieval outfit from scratch, by hand, with guidance from expert friends.
I'm just finishing up the 3rd year of a dressmaking course at the college.
I have a fantastic relationship with the most wonderful man on the planet, who is my husband.
And when it all gets to be too much - when I come close to collapse again - there's always someone there to help me.
I'm one of the lucky ones. I'll probably always have some remnant of CFS dragging around my system. But I didn't move on to full-blown ME, and for that I am supremely thankful.
Some people aren't so lucky. If you can, please watch the video and pass it along.
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