Chronic Fatigue Syndrome/M.E. Society

Original post by Foo.mp3

Can’t remember whether I posted this before but I’ve popped a simplified diagnostic criteria list for SEID (new name for ME/CFS according to some in the US) on my blog, in case anyone is interested (quite handy for identifying whether you have ME/CFS or not):

“Under the proposed criteria, at least 4 of the following 5 core symptoms (edited for brevity) must apply in order for one to receive a positive diagnosis:

◦ Fatigue + reduction in activity *
◦ Post exertional malaise (PEM) **
◦ Unrefreshing sleep

◦ Cognitive impairment OR
◦ Orthostatic intolerance (OI) ***

* Substantial and persisting for over 6 months, not the result of ongoing excessive exertion, and not substantially alleviated by rest

** A worsening of some symptoms e.g. typically including pain/fatigue, in the 12-48+ hours following exertion

*** Irregularities in blood pressure/heart rate regulation, associated with being upright and stationary, and in the context of low blood volume”

Full post here

Aye, dysautonomia (dysfunction of the autonomic nervous system) is a bit of a hallmark of ME/CFS, and one manifestation of it is orthostatic intolerance (OI) (one variant of which is POTS) and another is thermal dysregulation, including getting too warm/cold easily, and cold extremities vs. sweating (especially hands and feet). Not sure if it's related but I also used to go very red in the face rather easily when exercising, and can come out flushed with blood, a bit like looking like I have a rash, over my chest area when going at certain vigorous activities :innocent:

Well, I can categorically say I fit all 5 of those :lol:

My mum and I were talking about getting me a wheelchair actually, I said it'd be a good energy saving device for those days where I'm a bit inbetween, but it's still not gonna allow me to go out on the days where I'm not well because sitting upright is still too much, I need to lay.

I get a weird rash as well actually with similar activities haha, mine though there's nothing visible whatsoever but I get a weird prickly-itchy sensation all over my torso. Arms and legs are fine, face is fine except a mild bit on my forehead and a bit of my hands, but with my back, chest, stomach and shoulder area it gets very uncomfortable and even painful sometimes. It's always an "inbetween" sorta hot though, like those sort of activities where you get quite hot but you're not breaking a major sweat, so sort of hot-but not-enough-to-get-all-sweaty type of hot is when it happens.

Reply 602

Original post by WoodyMKC

Well, I can categorically say I fit all 5 of those :lol:

My mum and I were talking about getting me a wheelchair actually, I said it'd be a good energy saving device for those days where I'm a bit inbetween, but it's still not gonna allow me to go out on the days where I'm not well because sitting upright is still too much, I need to lay.

I get a weird rash as well actually with similar activities haha, mine though there's nothing visible whatsoever but I get a weird prickly-itchy sensation all over my torso. Arms and legs are fine, face is fine except a mild bit on my forehead and a bit of my hands, but with my back, chest, stomach and shoulder area it gets very uncomfortable and even painful sometimes. It's always an "inbetween" sorta hot though, like those sort of activities where you get quite hot but you're not breaking a major sweat, so sort of hot-but not-enough-to-get-all-sweaty type of hot is when it happens.

Hello friend..
Lots going on it seems!
Alas could be temperature changes that are affecting your skin..I'm the same, and it's annoying me. I wonder if it's bile salts if it's torso. Which was hinted to me when I had gallstones and issues with my gut!
I'm using my cane out and about but my POTS and EDS is playing up and can't cope with the pressure on my joints to walk! Much like you and a wheelchair argument :frown:

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Reply 603

Original post by Quiet _One86

Hello friend..
Lots going on it seems!
Alas could be temperature changes that are affecting your skin..I'm the same, and it's annoying me. I wonder if it's bile salts if it's torso. Which was hinted to me when I had gallstones and issues with my gut!
I'm using my cane out and about but my POTS and EDS is playing up and can't cope with the pressure on my joints to walk! Much like you and a wheelchair argument :frown:

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As always

Summer's almost over, thank god, hate it these days... Yeah possibly, tbf it's not too bad these days actually but last year it was terrible, was agonising on some days and stopped me doing a lot of things.
That sounds awful :frown:

Yeah as I was saying to her as well it'd either have to be electric or someone would have to push me or I'd probably just use as much energy as I would walking.

Reply 604

Original post by WoodyMKC

As always

Summer's almost over, thank god, hate it these days... Yeah possibly, tbf it's not too bad these days actually but last year it was terrible, was agonising on some days and stopped me doing a lot of things.
That sounds awful :frown:

Yeah as I was saying to her as well it'd either have to be electric or someone would have to push me or I'd probably just use as much energy as I would walking.

Feeling a burden as is - do you live at home still too?? I want to move out but don't know if I could mobility and safely tbh. How old did you say you were? Have you got any financial support coming in..or you working?
I'm hoping it cools down enough that I am not kicking covers off and on..my pillow support is frustrating too!
My lower back and arms and knee are the worst currently for clicking out and giving way!

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Reply 605

.Heather.

1

I've recently been diagnosed after suffering for a long time. It can be so isolating and worried about the future, being able to work etc.

Reply 606

Original post by Quiet _One86

Feeling a burden as is - do you live at home still too?? I want to move out but don't know if I could mobility and safely tbh. How old did you say you were? Have you got any financial support coming in..or you working?
I'm hoping it cools down enough that I am not kicking covers off and on..my pillow support is frustrating too!
My lower back and arms and knee are the worst currently for clicking out and giving way!

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Yeah I live at home, couldn't imagine living on my own to be honest, as much as I need time to myself pretty often I can hide away in my room for that, in general though I need to be around people or I start feeling lonely :lol:

I'm in my mid-20s now, I get PIP and I basically work at home playing the stock market, not making tonnes atm as it's a "get out what you put in" type deal but I'm making enough to get by comfortably, certainly less stressful than being on benefits and more stable haha. Being able to get PIP on top as it's not "means tested" means I can afford to run a car and so on, so I'm doing just fine :smile:

How's the financial support going on your end?
Yup that's a common problem with us folk apparently. Trying to get to sleep, too hot, kick off the covers, wake up in the night, too cold, put them back on again, wake up too hot, repeat :rofl:

Yeah

Reply 607

Original post by WoodyMKC

Yeah I live at home, couldn't imagine living on my own to be honest, as much as I need time to myself pretty often I can hide away in my room for that, in general though I need to be around people or I start feeling lonely :lol:

I'm in my mid-20s now, I get PIP and I basically work at home playing the stock market, not making tonnes atm as it's a "get out what you put in" type deal but I'm making enough to get by comfortably, certainly less stressful than being on benefits and more stable haha. Being able to get PIP on top as it's not "means tested" means I can afford to run a car and so on, so I'm doing just fine :smile:

How's the financial support going on your end?
Yup that's a common problem with us folk apparently. Trying to get to sleep, too hot, kick off the covers, wake up in the night, too cold, put them back on again, wake up too hot, repeat :rofl:

Yeah

We seem on the same page it would seem..aside I don't gamble on stocks and shares! in process of starting at a work trial in coming weeks for a few months unpaid. I would like to meet new people irl but friends are limited to ignorance of health and limits. So online friends seem to be my safe bet. Saying that some good friends I do have irl are long distance pen pals of late! Glad to make your acquaintance..

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Reply 608

Original post by Quiet _One86

We seem on the same page it would seem..aside I don't gamble on stocks and shares! in process of starting at a work trial in coming weeks for a few months unpaid. I would like to meet new people irl but friends are limited to ignorance of health and limits. So online friends seem to be my safe bet. Saying that some good friends I do have irl are long distance pen pals of late! Glad to make your acquaintance..

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It's not very risky once you know what you're doing tbf. My main strategy is just graph-watching, look for a point on the graph that a company's worth seems to be spiking up to quite regularly, then when it drops low, buy a bunch of shares, set it to auto-sell at that point you spotted earlier, then just leave it and it'll do the rest of the work itself :smile:

Could take a few minutes, could take a day, could take a week (doesn't usually, but it could) but it's gonna spike again soon enough.
Great :biggrin:

Hope you get on okay with that. I'm guessing it's part time to start with?

Exactly, I still have a few good friends who understand about as well as you're gonna get someone without a medical background to understand, but I've cut a lot of people out of my life tbh, there would be no malice at all and we'd have a good chat if we bumped into each other, but I guess where I was always a "leader of the gang" type of guy and would normally be the one to organise things between us all it was pretty easy to just gradually distance myself from them without upsetting anyone. It's good to chat with people online as well because it's easy to find the like-minded people that you can actually chat with about something meaningful, nothing better for me than getting deep into a conversation about something I'm genuinely interested in which unfortunately is hard to come by IRL.

Reply 609

Original post by WoodyMKC

It's not very risky once you know what you're doing tbf. My main strategy is just graph-watching, look for a point on the graph that a company's worth seems to be spiking up to quite regularly, then when it drops low, buy a bunch of shares, set it to auto-sell at that point you spotted earlier, then just leave it and it'll do the rest of the work itself :smile:

Could take a few minutes, could take a day, could take a week (doesn't usually, but it could) but it's gonna spike again soon enough.
Great :biggrin:

Hope you get on okay with that. I'm guessing it's part time to start with?

Exactly, I still have a few good friends who understand about as well as you're gonna get someone without a medical background to understand, but I've cut a lot of people out of my life tbh, there would be no malice at all and we'd have a good chat if we bumped into each other, but I guess where I was always a "leader of the gang" type of guy and would normally be the one to organise things between us all it was pretty easy to just gradually distance myself from them without upsetting anyone. It's good to chat with people online as well because it's easy to find the like-minded people that you can actually chat with about something meaningful, nothing better for me than getting deep into a conversation about something I'm genuinely interested in which unfortunately is hard to come by IRL.

Job is part time 2x days a week! I do hope to meet more people in real life that has a healthy balance to understanding my limits and still be able to b me at the same time..maybe even find true love in there somewhere haha..but no rush 😚
What other interests do you enjoy doing and talking about bcos I'm sure you're not all about health, stocks and shares!
Like minded people are hard to come by and taking the time to find in real life so online is easy by typing a topic and chatting..ha take being on here for too long?!

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Reply 610

Original post by Quiet _One86

Job is part time 2x days a week! I do hope to meet more people in real life that has a healthy balance to understanding my limits and still be able to b me at the same time..maybe even find true love in there somewhere haha..but no rush 😚
What other interests do you enjoy doing and talking about bcos I'm sure you're not all about health, stocks and shares!
Like minded people are hard to come by and taking the time to find in real life so online is easy by typing a topic and chatting..ha take being on here for too long?!

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Nice

Yup, you do sometimes think "I wonder if anyone would want me, I need looking after, nobody likes looking after people over the age of 16" :rofl:

Well, although I do find chatting about ME and learning from peoples experiences fascinating, chatting about stocks and such is... meh. Buy when they're low, sell when they're high, what else is there to talk about besides making predictions? Boooorinnnnng :lol:

Well as I said in this thread before I think, I'm into my weight training, obviously I'd love to be able to train 4 days a week like many do but I have to settle for less. Still working well though, making good progress luckily :smile:

Think people must look at me sometimes when I'm talking to them about how unwell I get and think "Well, how do you keep up a body like that then?" :s-smilie:

I'm a big snooker fan, don't play much these days but used to be rather talented :u:

I'm also a big comedy fan with a very varied sense of humour from dumbed down nonsense like Keith Lemon to more intellectual, geeky stuff like The IT Crowd and Peep Show.
I also like some really bad reality shows like Big Brother and The Only Way Is Essex, don't even know what I like about them but I could talk about them for hours :rofl:

Terrible I know...
I love a good read as well.
I dabble in making a bit of music here and there, used to make a lot of hip hop beats, at the moment I make the odd UK Grime beat or house track here and there. Good to get creative :biggrin:

Other than that, I thrive on nostalgia as well, love watching things or going and doing things that remind me of being a kid again :h:

How about you, what keeps your brain occupied and satisfied?

Reply 611

Original post by WoodyMKC

Nice

Yup, you do sometimes think "I wonder if anyone would want me, I need looking after, nobody likes looking after people over the age of 16" :rofl:

Well, although I do find chatting about ME and learning from peoples experiences fascinating, chatting about stocks and such is... meh. Buy when they're low, sell when they're high, what else is there to talk about besides making predictions? Boooorinnnnng :lol:

Well as I said in this thread before I think, I'm into my weight training, obviously I'd love to be able to train 4 days a week like many do but I have to settle for less. Still working well though, making good progress luckily :smile:

Think people must look at me sometimes when I'm talking to them about how unwell I get and think "Well, how do you keep up a body like that then?" :s-smilie:

I'm a big snooker fan, don't play much these days but used to be rather talented :u:

I'm also a big comedy fan with a very varied sense of humour from dumbed down nonsense like Keith Lemon to more intellectual, geeky stuff like The IT Crowd and Peep Show.
I also like some really bad reality shows like Big Brother and The Only Way Is Essex, don't even know what I like about them but I could talk about them for hours :rofl:

Terrible I know...
I love a good read as well.
I dabble in making a bit of music here and there, used to make a lot of hip hop beats, at the moment I make the odd UK Grime beat or house track here and there. Good to get creative :biggrin:

Other than that, I thrive on nostalgia as well, love watching things or going and doing things that remind me of being a kid again :h:

How about you, what keeps your brain occupied and satisfied?

I think for me I've always known to be poorly way or another but tried to keep positive and strong where possible. Let down to some degree in the lack of empathy and understanding of those that leave or distance themselves from me..but I'm learning it's a reflection of them not me. With having originally diagnosed with ME, people knew what I meant but since it's developed to the chronic of EDS and POTS I get stranger looks and detached conversations..if that makes sense! I joined support groups on social media to feel accepted and not so alone which I don't to some degree but like we said before it's not irl friendship which is what I crave of sorts and a settled stable relationship.

I think I recall you saying about body building..well done..is that dead weights or free weights? I know a little when I did some weights at the gym. How many kg are you managing! Post health I can only manage a 1kg ball for twists on squat ball, lame I know!
Physio has me going on the bike, x trainer and treadmill. I daren't do weights yet or I'll hurt my shoulder! Swimming is another past time I'm getting back into slowly!

As for hobbies I'm not keen on football/snooker/golf/darts...snore lol. But each to their own..much like me and rugby I love the sport and the passion not to mention the sheer determination from the players to keep playing wounded unlike football players..played tennis prior to diagnosis..tried after but it was too much!

I too love my comedy and stand up..maybe a little too much..comedian friends on the circuit helps..I'd love to go to Fringe one year. When I can muster enough energy etc. i love to find new comedy clubs around town within commutable distance. Love IT crowd but that's bcos I secretly fancy Chris O'Dowd.."have you tried turning it on and off again!" Loved him in Moone Boy..
I too love reading all kinds of things, from facts/nerdy things and such like to drama/thriller and autobiography! That goes for movies too. I love my gaming too..but only play Sims of late as not got the console!

I do love being creative with art and poetry over the last few years..and art therapy is my all time area of love..which helps meditate me out of here when it gets too much..

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Reply 612

Original post by Quiet _One86

I think for me I've always known to be poorly way or another but tried to keep positive and strong where possible. Let down to some degree in the lack of empathy and understanding of those that leave or distance themselves from me..but I'm learning it's a reflection of them not me. With having originally diagnosed with ME, people knew what I meant but since it's developed to the chronic of EDS and POTS I get stranger looks and detached conversations..if that makes sense! I joined support groups on social media to feel accepted and not so alone which I don't to some degree but like we said before it's not irl friendship which is what I crave of sorts and a settled stable relationship.

I think I recall you saying about body building..well done..is that dead weights or free weights? I know a little when I did some weights at the gym. How many kg are you managing! Post health I can only manage a 1kg ball for twists on squat ball, lame I know!
Physio has me going on the bike, x trainer and treadmill. I daren't do weights yet or I'll hurt my shoulder! Swimming is another past time I'm getting back into slowly!

As for hobbies I'm not keen on football/snooker/golf/darts...snore lol. But each to their own..much like me and rugby I love the sport and the passion not to mention the sheer determination from the players to keep playing wounded unlike football players..played tennis prior to diagnosis..tried after but it was too much!

I too love my comedy and stand up..maybe a little too much..comedian friends on the circuit helps..I'd love to go to Fringe one year. When I can muster enough energy etc. i love to find new comedy clubs around town within commutable distance. Love IT crowd but that's bcos I secretly fancy Chris O'Dowd.."have you tried turning it on and off again!" Loved him in Moone Boy..
I too love reading all kinds of things, from facts/nerdy things and such like to drama/thriller and autobiography! That goes for movies too. I love my gaming too..but only play Sims of late as not got the console!

I do love being creative with art and poetry over the last few years..and art therapy is my all time area of love..which helps meditate me out of here when it gets too much..

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Yep I know what you mean! You can tell the difference between those that are genuinely interested in learning about the condition, and those that ask what it is just out of politeness I guess, then switch off as you explain. Worst ones though are those that say things like "Oh, I get tired, I might have that!" :lol:

My brother is a main culprit there - keeps saying things like "I went for a 5 mile fasted run the other day and by the end I started feeling dizzy and like I was gonna pass out like you get, I think I might get checked to see if I have the same thing you have" :rofl:

He definitely doesn't understand the severity of it, he was genuinely bemused when I told him I'm getting a wheelchair.

I used to do pretty much all free-weights, but I guess as the weights have gotten heavier and my health has deteriorated a bit I do mostly uni-lateral machines and cable-machines now. I've built a good base now anyway so it's not strictly necessary to stick to free weights anymore. I've actually noticed some improvement in areas that were lacking a bit as well, I guess switching to exercises where the weight is on a fixed plane has made it easier to target certain areas that might have been harder to target for me with free weights. It's certainly less intense on the CNS system as well, beforehand I was for example bench pressing with a couple of 40kg dumbbells and squatting with 200kg across my shoulders, I guess the body knows that it has to support that weight or risk serious injury so it takes its toll on the nervous system. Whereas on a chest press machine and a leg press machine there's no risk of being crushed or anything :lol:

Funnily enough too I've had better results since switching to the chest press, my shoulder was always pretty weak which was a limiting factor I feel and I think bench press variants were screwing with my rotator cuff, but since I switched it's really improved, and my strength on push-based exercises has shot up.

I'm with you there, can't stand football. I think they should make a rule that says if you get hurt to a degree that requires a penalty then you'll be put on the bench for safety reasons. Should make them think twice :wink:

I used to enjoy a bit of tennis as well, played occasionally on a clay court near us. Haven't been for a couple years though.

That's great that you know some comedians :biggrin:

Any that have "broken through" yet? I've got quite a collection of stand-up DVDs, got all sorts but I think it's clear to see just by looking that Jimmy Carr is my favourite, his entire collection takes pride of place right in the middle :biggrin:

Yeah tbf I've noticed Chris O'Dowd can actually scrub up very well at times :smile:

Hilarious actor.
I read a lot of autobiographies as well, think Arnold Schwarzenegger's has been the best I've read so far, amazing how much that guy has done in his life.

Ohh yeah I like a bit of gaming as well :biggrin:

I do my gaming on my laptop. Bit of a zombies game freak myself, can't get enough of the genre. I got pretty addicted to Zombies mode on Call of Duty a few years back, a mate got me into it and we used to play for hours on his PS3 and I ended up getting it for my laptop because he ended up getting bored of it while I was still very much hooked.

Reply 613

Original post by WoodyMKC

Yep I know what you mean! You can tell the difference between those that are genuinely interested in learning about the condition, and those that ask what it is just out of politeness I guess, then switch off as you explain. Worst ones though are those that say things like "Oh, I get tired, I might have that!" :lol:

My brother is a main culprit there - keeps saying things like "I went for a 5 mile fasted run the other day and by the end I started feeling dizzy and like I was gonna pass out like you get, I think I might get checked to see if I have the same thing you have" :rofl:

He definitely doesn't understand the severity of it, he was genuinely bemused when I told him I'm getting a wheelchair.

I get the very same sort of reaction from my brother and dad too. “I’m sure with a good night’s sleep you’ll feel better” Nothing more frustrating is if I have had a sleepless night or I only got to sleep at 3am!! And I’m expected to get up for 9-10am. Which to normal people is a lie in..I don’t have the wheelchair but I have my cane. Getting looks of you don’t really need that do you. You’re only going to leave it somewhere.

I used to do pretty much all free-weights, but I guess as the weights have gotten heavier and my health has deteriorated a bit I do mostly uni-lateral machines and cable-machines now. I've built a good base now anyway so it's not strictly necessary to stick to free weights anymore. I've actually noticed some improvement in areas that were lacking a bit as well, I guess switching to exercises where the weight is on a fixed plane has made it easier to target certain areas that might have been harder to target for me with free weights. It's certainly less intense on the CNS system as well, beforehand I was for example bench pressing with a couple of 40kg dumbbells and squatting with 200kg across my shoulders, I guess the body knows that it has to support that weight or risk serious injury so it takes its toll on the nervous system. Whereas on a chest press machine and a leg press machine there's no risk of being crushed or anything :lol:

Funnily enough too I've had better results since switching to the chest press, my shoulder was always pretty weak which was a limiting factor I feel and I think bench press variants were screwing with my rotator cuff, but since I switched it's really improved, and my strength on push-based exercises has shot up.

I can only reply with get you! haha. But good effort..I will stick to my routine for now. Weights are a no go for my dislocations and weaker muscle mass at the minute although i could probably doing with a little training or toning!

I'm with you there, can't stand football. I think they should make a rule that says if you get hurt to a degree that requires a penalty then you'll be put on the bench for safety reasons. Should make them think twice :wink:

do you follow rugby then? With your build I’m sure you would make a good player in another lifetime without your health issues.

I used to enjoy a bit of tennis as well, played occasionally on a clay court near us. Haven't been for a couple years though.

Its my summer sport, but obviously not played for quite some time.

That's great that you know some comedians :biggrin:

Any that have "broken through" yet? I've got quite a collection of stand-up DVDs, got all sorts but I think it's clear to see just by looking that Jimmy Carr is my favourite, his entire collection takes pride of place right in the middle :biggrin:

Yeah tbf I've noticed Chris O'Dowd can actually scrub up very well at times :smile:

Hilarious actor.

not quite sure of JC but give me Michael McIntyre or Russell Howard to name a few. My friends on the circuit is far between. I watch them at local gigs mainly – some try and get onto the broken through circuit. Watch this space.

I read a lot of autobiographies as well, think Arnold Schwarzenegger's has been the best I've read so far, amazing how much that guy has done in his life.

oh dear AS is on your collection..not my cup of tea..long story, boy do I have one. Maybe at a ME TSR meet up I’d tell you haha. But I love learning about people, and getting to know them.

Ohh yeah I like a bit of gaming as well :biggrin:

I do my gaming on my laptop. Bit of a zombies game freak myself, can't get enough of the genre. I got pretty addicted to Zombies mode on Call of Duty a few years back, a mate got me into it and we used to play for hours on his PS3 and I ended up getting it for my laptop because he ended up getting bored of it while I was still very much hooked.

I am an Xbox gamer myself or PC but not really keen on the PS consoles. Love zombie games, first person gaming, and driving games..simulation ones are always fun. Less mind active demanding one suit me fine.

Reply 614

Original post by Quiet _One86

I get the very same sort of reaction from my brother and dad too. “I’m sure with a good night’s sleep you’ll feel better” Nothing more frustrating is if I have had a sleepless night or I only got to sleep at 3am!! And I’m expected to get up for 9-10am. Which to normal people is a lie in..I don’t have the wheelchair but I have my cane. Getting looks of you don’t really need that do you. You’re only going to leave it somewhere.

I can only reply with get you! haha. But good effort..I will stick to my routine for now. Weights are a no go for my dislocations and weaker muscle mass at the minute although i could probably doing with a little training or toning!
do you follow rugby then? With your build I’m sure you would make a good player in another lifetime without your health issues.
Its my summer sport, but obviously not played for quite some time.
not quite sure of JC but give me Michael McIntyre or Russell Howard to name a few. My friends on the circuit is far between. I watch them at local gigs mainly – some try and get onto the broken through circuit. Watch this space.
oh dear AS is on your collection..not my cup of tea..long story, boy do I have one. Maybe at a ME TSR meet up I’d tell you haha. But I love learning about people, and getting to know them.

I am an Xbox gamer myself or PC but not really keen on the PS consoles. Love zombie games, first person gaming, and driving games..simulation ones are always fun. Less mind active demanding one suit me fine.

All too familiar to me, if I can get my head down for midnight and get up at 9-10 and not feel sleep deprived it's been a bloody good night/morning!
Slightly related re: the cane, really amuses me so thought I'd share; my next door neighbour has poor eyesight, not blind but... he likes to walk around with a blind person's stick that he doesn't really use :lol:

He just carries it under his arm the whole time and people see the blind person's stick and instantly move out of his way when he can see full well where he's going, yet they don't give it a second look. Whereas a young person like yourself who genuinely needs a cane for support gets looked at like "Why on earth have you got that???". Strange world we live in, still think there's far too much stigma around the young and disabilities.

Yeah that's the thing, like my support guy who's sorting the wheelchair for me reckons I shouldn't be training with such heavy weights, but I'm not convinced. This time a few years ago I had some serious knee and hip problems as well as the shoulder problems. I still get some arthritic pain in the winter but in general, strengthening my knees, wrists, hips and so on has really improved them, and since I stopped working with free weights on bench press variants and started working with machines my shoulder has felt better than it's felt in years. Obviously he was looking at it from a recovery perspective as well, but honestly I don't think I'm any worse off healthwise when I'm training versus when I'm not. Haven't trained for the past couple of weeks for example, started off as being a bit unwell the week before and I've been knocked off my routine a bit now, must try and start again on Monday if I can - but anyway, I've felt absolutely rubbish these past couple of weeks and had just as many bad days as I normally do when I'm training a couple of days a week.
Nah I've never followed rugby tbh, just never taken my interest. Never been a big fan of regular sports tbh, throughout life I've tended to like all the alternative sports. As I said before I went through an extreme sports phase, I've been into wrestling, there was the snooker phase, and I guess if you can call it a sport there's now the lifting/bodybuilding.

I love a bit of Michael McIntyre, got all his DVDs :biggrin:

Lee Evans is great as well, got all of his DVDs too. Oh and Al Murray, genius character comedy, 75% of his shows are riffing off the crowd, ridiculously quick witted. That sounds good actually, I know a lot of people do the comedy for a hobby and the pure love of it all which is fair enough, hate it when people have this attitude that if something doesn't make you proper money then it isn't worth doing.

Ahhh I love Arnold, huge fan :biggrin:

Got all his films, and as arguably the best bodybuilder there ever was naturally he's someone I look up to. I understand though there probably aren't many female Arnold fans out there, he's definitely much more of a guy's guy :lol:

Nah I'm not overly keen on the PS controllers tbh, don't feel right. Which is weird because I grew up with my PS1 and then PS2, I guess by the time the PS3 was released I was growing up and had other interests so didn't game anymore anyway and never ended up buying one. of course you can hook up an Xbox 360 controller to a Windows PC/laptop easily so I went with that option when I got into CoD: Zombies anyway and I definitely preferred the feel of it. Highly recommend Black Ops 1 zombies if you haven't played it, suppose when you first start playing it just seems like the best idea to find an area to camp in, get the best weapons you can and keep shooting until you all get overpowered and die, but there's a lot of advanced strategy that'll blow your mind once you learn about it all that can take you to some ridiculous rounds if it's your sort of thing to spend days (with sleep breaks obviously) playing the same map. I did a round 100 run once, never again I tell you that, two straight days of rinsing the same strategy over, and over, and over, hundreds and hundreds of times :rofl:

Reply 615

Lee Evans is a legend isn't he - sweats buckets..would of loved to see him live! have his gig boxset somewhere..or is it at a friends :frown:

don't think I'll be getting that back. Oh well Comedy Central show his gigs often!

Arnie is ok in small doses I guess..liked him in last action hero and terminator or total recall but having sorta met the guy it changed my view of him a little (tell you another time) alas his bodybuilding days are numbered and sorta out of date.

Rugby should be a sport loved by the true patriotic men lol..no offence but not sure snooker can be enjoyed on the same level or anything - I end up falling asleep or walking away!

Gaming is fun, esp if it's gonna keep you drawn in like zombie games or jumpy ones - horror ones that have characters in haunted missions with dangerous characters..love my grand theft auto but that's for the careless driving and half the cheats on for invisibility :smile:

Finally then, what movies are you into growing up to now then aside from the Arnie ones? I'm guessing that Toy Story is up there hence the username Woody..or is that a nickname to your real name?

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Reply 616

laffytaffy

4

Original post by Quiet _One86

Re PoTS push it if you feel you need to. But if they don't listen maybe ask for a referral to see what they suggest what other options are out there for you! You're in charge of your health and getting the rights you deserve! it's taken me 10yrs but that's with pushing it home to so many docs granted that must sound daunting but once you meet the right Dr you'll be relieved and happier to have them on side. Good luck :smile:

feel free to message me anytime - granted my PMs aren't working at this time but on here is ok bcos we all know what we're all going through even if I don't directly reply :smile:

Re love life. Yes, after almost 7yrs (2011) we ended up breaking up over i think in part was down to my then undiagnosed poor health and my mental stability was so bad. I felt my ex and his family made me feel bad for being ill and leaving for my ex to fund us putting a roof over our heads..I wished we were stronger to pull through that time but hey ho! The children part was suggested he didn't see a future with me inc. children etc!

Hindsight I'll hold onto the fact I'll meet someone who'll understand my limits and conditions and support me and I'll do my part to support them in my own way which will be enough for them bcos they understand!

Don't beat yourself up over any of this. Take your time. Pace yourself and meditate if it helps. Time is a healer and stay strong and communicate how you are to us or in a blog/journal if that helps! Soft hugs & good luck xx

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Omg that's horrible :frown:

I hope we both meet someone more understanding.

I've finally finished exams etc but I'm really stressed out. I was only back at uni for under 2 weeks but I can not stand our new flatmate.

He is an insomiac and keeps making noise in the middle of the night (and then his alarm goes of at 9am). He literally kept me up till 5am with noise the night before one of my exams... and came home drunk/stoned and hungry at 2am the night before the other one. I'm scared I've failed them.... I was so tired.

exams always bring me down anyway but I am seriously concerned that living with him is going to make me more ill. We made it quite clear when advertising for a new flatmate that we are a quiet flat, who doesn't go out and that I have a medical condition that needs a lot of sleep - he seemed really agreeable at the time, so feel like we were lied to about his lifestyle. I feel like a normal person would be annoyed with disturbances at this time of night, let alone someone with our health.

How are you doing?

(edited 8 years ago)

Reply 617

amykx189

1

Original post by Rumaanaa

Yeahh I'm sleeping regularly ,I wake up 8-9ish ,have breakfast and supplements then nap till 12 again then awake for few hrs then nap again then bed time at 11pm and wake at 8am again...I just can't seem to stay awake 😭 I researched abit about ashwaganda..and was wondering if theirs any particular brand you'd recommend please :smile:

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Hi Rumaanaa,

I've only just discovered this thread about ME/CFS on here, so glad! I hope you're as well as possible, but just thought I could share with you something someone from my school told me when I first got diagnosed, it's the best bit of advice I had! I was told to try and completely resist the urge to sleep in the day and have no naps at all - just the amount of sleep my age group needs at night. It is so so hard at first to stay awake as I was sleeping pretty much the same amount as you say. It really works though! After the initial struggle to stay awake, this becomes easier and easier, and actually helps rise energy levels! And when the energy levels rose, I was able to work with my physiotherapist to develop an exercise therapy plan (a 3/4 minute walk a day gradually building up). I'm o where near out of the woods yet, but am a steady 10% higher on the ME scale just from not having naps in the day! I still find now that if I sleep in the day it puts me back again! So if you haven't already stopped the day naps, I would definitely recommend it! It really did help me so much! Hope it works as well for you!

Amy

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