Hello everyone!

Nice to find this site, I’ve not heard of it before.

I have CFS/ME (I never know which one to use, so use both!) and have had it since I graduated college in 2006. I’ve only recently been diagnosed after 4-5 years of poking, which is a relief, oddly. I have a name for the demon inside me.

My experiences with CFS/ME on the NHS in the UK are varied. I have to tell the doctor what I want done, since all they gave me is a referral form for discounted exercise at the local gym. There’s a large waiting list for everything concerning the illness, from CBT to a dietician, so I have to do a lot on my own. I have no clue what supplements/changes in diet to do just yet, and am willing to do anything to get well. Exercise seems to be doing more harm then good (repetitive motions are a killer for me) but I will stick at it for another month and see what happens.

I had to move back in 2008 to my parents place because of the sick. I am grateful for my mum and dad for taking me in, but I’ve had eo Around that time I was at my lowest mentally and thought my symptoms were tied to that, but it turns out it’s the other way around.

You know, I can deal with the muscle pains and aches, the always getting a cold/virus that’s going around, even deal with the depression that comes with it, but I loathe the tiredness and the brainfog the most.

I feel like i’ve wasted my 20s and the important bit of my career because of it. This illness has stopped me from moving on; when I feel I get better and can do things like brave the public transport and airports to visit my boyfriend in Sweden, bam something happens and I’m sick and tired again, and need a few months to recover and get to a point where I can leave the house again.

I am trained as a fashion designer in college, and I want to do that. I am still interested, but my body won’t let me.

My life goals are, as such:

1) Get healthy enough to work and apply for work
2) Move to Sweden to be with my boyfriend
3) Get a dog

…that’s it. That’s all I want in life. Not asking for too much, am I?

Sian
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Hi Sian! (@soignee)

Welcome to Healkick! I’m from Ireland & I have ME/CFS too. (I never know which to use either! ) My experience is similar to yours. I got sick the year before I would have graduated & I had to move back in with my parents within months of getting sick. And I also thought my physical was due to depression initially when it was the other way around. Thankfully I was sick enough that I got a diagnosis within the first year but I’ve had to pursue all my treatment myself because my doctor didn’t have anything to offer me. I’ve done diets, CBT, graded exercise, physiotherapy, pacing, seen a few different doctors & tried lots of different drugs with some successes & lots of failures!

Be careful with exercise – I do think it can be helpful if done right but very harmful if its done wrong. If you feel like its making you significantly sicker pull back to a level you can do without feeling much worse. One of the best things thats worked for me is to get a heart rate monitor & stay inside my anaerobic threshold. ( there’s a good blog post about it here http://livewithcfs.blogspot.com/2011/02/heart-rate-and-post-exertional-crashes.html )

I understand the frustration of not being able to get on with your life. I hope you do find some treatments to help & get to move on with your career & life. In the mean time you’ll find lots of support, encouragement & a few laughs on this site.

ah sorry I just reread my post, some sentences are all muddled.

The exercise thing annoys me, as short of paying more money for a better personal trainer who gives a damn more, rather then Mr. Jock who checks out women while ignoring me. I come back exhausted and need a day to recover from the exercise, usually.

I’ll give the heartrate monitor thing a go.

Hey there, I’m from England too and can totally relate to a lot of your experience, its really hard to know what to do for the best as there is so much information out there about what might help people with CFS and its not always easy to work out what to do. I’m trying to figure that all out myself really. At the moment I”m trying out some CBT, but I’m very sceptical. The thing that I have found to work the best is pacing and for me that involves trying to have regular periods through out the day where I lie down and close my eyes and truly rest for a set period of time. and generally balancing rest and activity helps but its not easy to try and keep remembering to get the balance right and then there are days where nothing seems to help. I’m hoping that over time it just gets easier to learn what your body needs and I will start to get better. Welcome to heal kick hope you find support and good company here.

Welcome Sian,

I’m glad you found us here. I can definitely relate to the frustrations you mention about trying to sort through the mountains of information and suggestions for how to get better from ME/CFS. (I actually prefer to call it ME…even though that term isn’t officially recognized in the US).

I tend to agree with Miriam (missmilki) above that exercise usually only makes us worse. I think the studies that found that exercise supposedly benefits ME are studies that cast such a wide net that they included people who really had depression.

Anyway, hope to see you around.

Take care

Patrick

Welcome welcome, Sian. How is your name pronounced? I am sorry to hear that your treatment has been so difficult. I have been trying to figure out a way to help a Welsh friend find the right doctor but it isn’t easy.

I have some ideas for you about exercise that may or may not work for you. I have a lot of experience in that area by now so hopefully I can help. Catch me on chat if the timing works out, or if not, we can try another way.

@patrick will give it one more go and then give up if too much.

@classicalvoice my name is said Sharn, weird Welsh vowels are weird. I am doing pilates, yoga and some kind of resistance machine work. The latter I hate so very much.

As others have said, exercise can make people with ME worse. It’s so hard to find that balance of not letting your muscles atrify (sp?), but to not make the pain and fatigue worse. If you like most of us and aren’t getting deep sleep, then your muscles aren’t able to repair from even normal wear-and tear, so exercise will just damage them more. I agree that the fatigue and brain fog are the hardest symptoms to deal with.

Welcome to healKick! I love the great support here.

Welcome here! Now I want you and our other new Brits to show up on video (or audio) chat to find out what “hallo” sounds like.