CFS/M.E and Fibromyalgia Awareness Day 2017

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chelseadagg3r
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Today is Chronic Fatigue Syndrome/Myalgic Encephalomyelitis and Fibromyalgia Awareness Day.

Having both conditions myself, today is really really important to me. It can be really invisible a lot of the time so people often really struggle to understand the effects of it, but they can both be so debilitating, disabling, and isolating.

Check out the threads we've got up today below! It's also Mental Health Awareness Week this week, and today is focussed on thriving with disability, so a lot will be used for both. It's a great chance to be involved with two really good causes!

CFS/ME Awareness Day 2017:

Myths about living with a disability
How does illness and disability affect your mental health?
Chelsea's good days vs bad days
I use a wheelchair, AMA!
MHAW - Thriving with disability

You can also join the 'All about M.E Society' here, chat in the CFS/ME Society thread here, join the Chronic Pain Society here and chat in the Chronic Pain Society thread here



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It's****ingWOODY
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Wow, can't believe this has come around again already! Reminds me to be grateful for how much I've improved since last year. 2016 was an awful year for me, health wise. So far, I've had a few off weeks here and there, but I've had a very productive 2017 and been relatively well for the most part (meaning, more "better days" than "bad days" per week, which is always great).
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Tiger Rag
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Thanks for posting this. I remember a few people (I have quite a few friends on FB with CFS / ME) saying this also affects them mentally as well as physically. How does it affect you mentally?
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username2667475
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I didn't know there was a CFS awareness day. I'm just glad to be doing better now, I had a tough winter but things are finally looking up.
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furryface12
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How is it this again already?! But yayy for CFS awareness

(I will come up with something more constructive to say at some point, I promise...)
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chelseadagg3r
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(Original post by WoodyMKC)
Wow, can't believe this has come around again already! Reminds me to be grateful for how much I've improved since last year. 2016 was an awful year for me, health wise. So far, I've had a few off weeks here and there, but I've had a very productive 2017 and been relatively well for the most part (meaning, more "better days" than "bad days" per week, which is always great).
I'm so glad to hear you've improved! I'm not sure about last year because I took it as a rest year, but I'm definitely better than I was two years ago which I'm infinitely grateful for.

(Original post by Tiger Rag)
Thanks for posting this. I remember a few people (I have quite a few friends on FB with CFS / ME) saying this also affects them mentally as well as physically. How does it affect you mentally?
It was definitely a huge part in the onset of my depression and anxiety, for sure. I can go for months blanking friends and family because I'm so terrified talking to them too much will cause a relapse. A relapse is always on the back of my mind, so it affects a lot of what I do. It's also really upsetting never being able to keep up with the people around you, so every day is just full of me not being able to do things I want to be able to do, like walk to class with my friends without having to make an excuse to get away from them because I need to take a couple of rest breaks on the way. Because there's no cure or anything either, it's difficult to plan the future, so it really feels like you're just stuck. It's hard to have hope in that kind of situation at all, but you have to to carry on. I'm doing a lot better mentally than I have been in years though, so I have that to be thankful for. I get a lot more support now with my mental health so I find it easier to manage my conditions

(Original post by Ellie419)
I didn't know there was a CFS awareness day. I'm just glad to be doing better now, I had a tough winter but things are finally looking up.
Yes! I'm so happy it has an awareness day. I'm really glad to hear things are looking up!

(Original post by furryface12)
How is it this again already?! But yayy for CFS awareness

(I will come up with something more constructive to say at some point, I promise...)
:laugh: :woo:
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It's****ingWOODY
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(Original post by Tiger Rag)
Thanks for posting this. I remember a few people (I have quite a few friends on FB with CFS / ME) saying this also affects them mentally as well as physically. How does it affect you mentally?
For me, it's just frustrating more than anything. I've also had seizures in the past and also get hypos, sorta like being diabetic but with no actual known root so unlike being diabetic, it's basically untreatable... so I get a lot of anxiety around the possibility of those attacks happening again.
I find that the attacks can be circumvented in the same way you'd treat a diabetic hypo, by catching it early and taking in some sugars but I also need sodium and liquid as well as a bit of food as my blood volume drops also. I keep bottles of Lucozade Sport in my car and always carry one around when I'm out, and also keep Nutri-Grain bars in the car and keep one in my pocket when I'm out. If I feel myself starting to go hypo (I get light-headed and hot) then I'll chug half the Lucozade and then shove the Nutri-Grain in my gob and use the rest of the Lucozade to help soften it so I don't have to chew it much and swallowing it with the liquid is easier.

Even if I catch it though, it leaves me feeling really bad and I have to go home and lie down. I don't often drive for long distances, because if I have an attack then I'm not going to have much mental stamina to be able to drive a long distance back home. Also, I know that if I have something important planned the next day then I can't be too busy the day before or it'll increase the likelihood that I won't be able to leave the house the next day because I'll be unwell. So there's a lot of avoidance anxiety there as well.
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It's****ingWOODY
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(Original post by Tiger Rag)
Thanks for posting this. I remember a few people (I have quite a few friends on FB with CFS / ME) saying this also affects them mentally as well as physically. How does it affect you mentally?
For me, it's just frustrating more than anything. Just days where I can't really do anything other than lie on my bed in silence, no screens, no music, nothing... just the worst.
I've also had seizures in the past and also get hypos, sorta like being diabetic but with no actual known root so unlike being diabetic, it's basically untreatable... so I get a lot of anxiety around the possibility of those attacks happening again.
I find that the attacks can be circumvented in the same way you'd treat a diabetic hypo, by catching it early and taking in some sugars but I also need sodium and liquid as well as a bit of food as my blood volume drops also. I keep bottles of Lucozade Sport in my car and always carry one around when I'm out, and also keep Nutri-Grain bars in the car and keep one in my pocket when I'm out. If I feel myself starting to go hypo (I get light-headed and hot) then I'll chug half the Lucozade and then shove the Nutri-Grain in my gob and use the rest of the Lucozade to help soften it so I don't have to chew it much and swallowing it with the liquid is easier.

Even if I catch it though, it leaves me feeling really bad and I have to go home and lie down. I don't often drive for long distances, because if I have an attack then I'm not going to have much mental stamina to be able to drive a long distance back home. Also, I know that if I have something important planned the next day then I can't be too busy the day before or it'll increase the likelihood that I won't be able to leave the house the next day because I'll be unwell. So there's a lot of avoidance anxiety there as well.
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chelseadagg3r
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(Original post by WoodyMKC)
For me, it's just frustrating more than anything. Just days where I can't really do anything other than lie on my bed in silence, no screens, no music, nothing... just the worst.
I've also had seizures in the past and also get hypos, sorta like being diabetic but with no actual known root so unlike being diabetic, it's basically untreatable... so I get a lot of anxiety around the possibility of those attacks happening again.
I find that the attacks can be circumvented in the same way you'd treat a diabetic hypo, by catching it early and taking in some sugars but I also need sodium and liquid as well as a bit of food as my blood volume drops also. I keep bottles of Lucozade Sport in my car and always carry one around when I'm out, and also keep Nutri-Grain bars in the car and keep one in my pocket when I'm out. If I feel myself starting to go hypo (I get light-headed and hot) then I'll chug half the Lucozade and then shove the Nutri-Grain in my gob and use the rest of the Lucozade to help soften it so I don't have to chew it much and swallowing it with the liquid is easier.

Even if I catch it though, it leaves me feeling really bad and I have to go home and lie down. I don't often drive for long distances, because if I have an attack then I'm not going to have much mental stamina to be able to drive a long distance back home. Also, I know that if I have something important planned the next day then I can't be too busy the day before or it'll increase the likelihood that I won't be able to leave the house the next day because I'll be unwell. So there's a lot of avoidance anxiety there as well.
That's really really interesting. I'm glad you've shared that. I have the same issue, it sounds like. Doctors would never really look into it, but I have the same issue with those kind of attacks. Also had a couple of seizures in the past. I also always make sure to keep sugary drinks on me at all times, which helps
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It's****ingWOODY
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(Original post by chelseadagg3r)
That's really really interesting. I'm glad you've shared that. I have the same issue, it sounds like. Doctors would never really look into it, but I have the same issue with those kind of attacks. Also had a couple of seizures in the past. I also always make sure to keep sugary drinks on me at all times, which helps
From what I've read it sounds like it might be PoTS symptoms, but I've never had it fully checked out.
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chelseadagg3r
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(Original post by WoodyMKC)
From what I've read it sounds like it might be PoTS symptoms, but I've never had it fully checked out.
Interesting. Neither have I. I got sent to hospital in an ambulance once because when I had one, someone thought I was having a stroke lol. I was tachychardic for a few hours, but once that calmed down they were just like 'bring it up with the GP bye' and the GP was too busy working with a billion other specialists for all my other problems so it just got put on the back burner. I might bring it up when I join a new surgery at uni, but I'm not too bothered for now
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It's****ingWOODY
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(Original post by chelseadagg3r)
Interesting. Neither have I. I got sent to hospital in an ambulance once because when I had one, someone thought I was having a stroke lol. I was tachychardic for a few hours, but once that calmed down they were just like 'bring it up with the GP bye' and the GP was too busy working with a billion other specialists for all my other problems so it just got put on the back burner. I might bring it up when I join a new surgery at uni, but I'm not too bothered for now
Yeah, I went to the doctors about it and I've been tested for diabetes and a bunch of stuff several times but it's definitely not that, I'm still waiting for my M.E. clinic appointment and the GP said speak to them about it. Goodness knows how long that's gonna take :lol: but like most M.E. symptoms, we find our little ways of managing them as best as we can.
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chelseadagg3r
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(Original post by WoodyMKC)
Yeah, I went to the doctors about it and I've been tested for diabetes and a bunch of stuff several times but it's definitely not that, I'm still waiting for my M.E. clinic appointment and the GP said speak to them about it. Goodness knows how long that's gonna take :lol: but like most M.E. symptoms, we find our little ways of managing them as best as we can.
Yeah, been tested for diabetes so many times now :laugh: I may actually request an ME clinic appointment once I move. I don't have access to any here because there's no ME services that serve my area. The closest I got was an appointment with an immunologist over an hour away who told me 'it's all in your head, see you in 2 months' :rolleyes:
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It's****ingWOODY
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(Original post by chelseadagg3r)
Yeah, been tested for diabetes so many times now :laugh: I may actually request an ME clinic appointment once I move. I don't have access to any here because there's no ME services that serve my area. The closest I got was an appointment with an immunologist over an hour away who told me 'it's all in your head, see you in 2 months' :rolleyes:
My appointment is about 20 minutes drive away thankfully, problem is the waiting list is ridiculous :rolleyes:

How were you diagnosed? I was diagnosed by a rheumatologist, pretty much just pulled my joints around and prodded me all over the place and asked me questions for like an hour, ordered some more bloods and then wrote to my GP confirming my diagnosis. Funny cause I'd been training for a couple of years by then and was in good shape, she asked me to take my shirt off and straight away she was like "Okay... I can see you go to the gym, how do you manage that?" :lol: At the time I still trained at home and told her I just have to wing it based on how I feel and don't have a routine like most people do, takes about 3 hours out of my entire week and she totally understood.

A lot of people don't get it because I look so able-bodied and obviously I train hard when I do train, but there's also the fact that the exercise suits me - very short bursts of intense activity (less than 30 seconds), then rest for a few minutes and repeat. I can handle 45 minutes worth of that, whereas a 10 minute jog would floor me for the next couple of days :rofl: Just can't handle aerobic activity. Think it might have been you I spoke to before and linked to a video about how aerobic and anaerobic activity affects people with M.E.? What the guy was saying there totally resounds with me.
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chelseadagg3r
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(Original post by WoodyMKC)
My appointment is about 20 minutes drive away thankfully, problem is the waiting list is ridiculous :rolleyes:

How were you diagnosed? I was diagnosed by a rheumatologist, pretty much just pulled my joints around and prodded me all over the place and asked me questions for like an hour, ordered some more bloods and then wrote to my GP confirming my diagnosis. Funny cause I'd been training for a couple of years by then and was in good shape, she asked me to take my shirt off and straight away she was like "Okay... I can see you go to the gym, how do you manage that?" :lol: At the time I still trained at home and told her I just have to wing it based on how I feel and don't have a routine like most people do, takes about 3 hours out of my entire week and she totally understood.

A lot of people don't get it because I look so able-bodied and obviously I train hard when I do train, but there's also the fact that the exercise suits me - very short bursts of intense activity, then rest for a few minutes and repeat. I can handle 45 minutes worth of that, whereas a 10 minute jog would floor me for the next couple of days :rofl: Just can't handle aerobic activity. Think it might have been you I spoke to before and linked to a video about how aerobic and anaerobic activity affects people with M.E.? What the guy was saying there totally resounds with me.
I was diagnosed by a paediatrician when I was a young teenager. Largely the same thing happened with me, just over the course of a few months :laugh: I was super super active as well, but had not long before had to stop everything because it was too much, and she couldn't understand it. I'd been doing it since I was 3, so it was my regular routine and I was used to it, and was actually very fit, but yeah after that it all just went down hill :laugh:

Yeah, we've spoken about it before. If I can afford it, I'll definitely be getting a gym membership to try out when I go off to uni. I'd really like to try it out and see if it suits me. It is really good that you've found what suits you, but yeah I totally get what you mean about people not seeing it in you and understanding
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It's****ingWOODY
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(Original post by chelseadagg3r)
I was diagnosed by a paediatrician when I was a young teenager. Largely the same thing happened with me, just over the course of a few months :laugh: I was super super active as well, but had not long before had to stop everything because it was too much, and she couldn't understand it. I'd been doing it since I was 3, so it was my regular routine and I was used to it, and was actually very fit, but yeah after that it all just went down hill :laugh:

Yeah, we've spoken about it before. If I can afford it, I'll definitely be getting a gym membership to try out when I go off to uni. I'd really like to try it out and see if it suits me. It is really good that you've found what suits you, but yeah I totally get what you mean about people not seeing it in you and understanding
Young then! I'm 27 now and was diagnosed a couple of years ago. I was super active as a teenager also, always involved in sports which I used to spend most of my free time doing. Wasn't overly active in my early 20s but I was still very fit and able. Started getting a lot more active again when I was 23 and started lifting and I'd go for walks or bike rides with my pal on days where I wasn't training. When I was 24 i started noticing a change in my ability to tolerate exercise and was soon(ish) diagnosed with mild M.E., now I've been rediagnosed as moderate.

Definitely worth a try! I don't think I'd get much exercise if it wasn't for the lifting tbh and if there's anything I learned last year, it's that if I fall off the wagon then it creates a vicious cycle of feeling crappy because I've not been exercising, and stuggling to get back into it because I feel crappy :lol: At the start of the year my mate got into going full-time and he said he wants to stop messing about and for me to basically mentor him aha, so that got me into going again and the first month was so hard, the motivation just wasn't there and I actually felt really anxious every time I went to the gym. Now that I'm back into the swing again though I'm enjoying it, and don't want to fall off the wagon again if I can help it!
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