Struggling

[Icandothistoday]

Good morning all.

After a lengthy 2 year struggle with my health and trying in vain to get a diagnosis of some sort, i have not been diagnosed with CFS/ME which explains all my symptoms over the past 2+yrs.

I need to improve my health with excersize but struggle to stand, walk or even move most days.

I am normally a very active person, ie, on my feet all day at work, lots of activities, swim twice a week (120 lengths).

It makes me so upset the way i have become and could cry just writing this as it's not me i am writing about but reality, it is.

[UnfitNoMore]

Hi,

At least you have a diagnosis now... the last couple of years must have been very worrying. As far as I understand the condition, graded exercise therapy will be part of the treatment, and will be tailored to your condition and current abilities. Walking and swimming are two of the biggies in this too, so hopefully you can get your condition under control. Everybody is different and it will take some time, but don’t stop fighting it and you’ll be back doing the things you love again. Active 10 could well fit into the plan nicely.

[Hidden in reply to UnfitNoMore]

I remember when I was diagnosed with blood clots in my lungs and it was a relief to have some mysterious symptoms I had been experiencing explained and getting started on treatment.

[Icandothistoday in reply to UnfitNoMore]

Thank you for reply.

[Hidden in reply to Icandothistoday]

It's nice isn't it when you find out its not just you that has gone through these things and that horrible things happen to everyone at some point.

[GoogleMe in reply to UnfitNoMore]

I wish I'd caught up with this thread before. Graded Exercise Therapy is an absolute no-no for anyone with ME (ask any of the ME organisations) There is a whole dreadful story of very shady behaviour behind this. 'Fighting' ME is too often a fast track to permanent deterioration.

The normal rules of exercise simply do not apply... and to be honest I wouldn't touch with the Active 10 programme with a bargepole at this stage in your journey (I still find brisk walking disagrees with me, but I've learned to run 13k... I need to spend most of my life in bed and I am not able to work).

I'm concerned about the 'loss of motivation' as that's not part of ME, but it sounds as though you've had a big change from your previous way of life over the last couple of years. I don't know how recently you got an ME diagnosis but you may very well be grieving over that, quite reasonably. It sounds as though you may have had a good counsellor and I don't know whether you are still able to access that support? Of course what you may describe as 'loss of motivation' is really wisdom on your part, knowing that something isn't really appropriate to where you are right now. There are so many forums and groups these days (I think there are some on HealthUnlocked) but I'd really recommend seeking out support and information from the ME Association as a start and a solid foundation.

Right now the exercise you need (and can get) in your life is that of wringing all the enjoyment out of it that you can - it is still there. I've a lovely friend who is very severely disabled (she doesn't get to sit up much) and has been for the 20+ years I've known her - her Christmas letter is always one of the most interesting to read.

[Hidden]

I had blood clots in my lungs a couple of years ago and I found that the physical side of things was easier to deal with than the psychological side.

When I was discharged from the hospital I had asked about what exercise was safe to do and they said walking was great but if it hurt or I got puffed out then I was to stop so what I did was built up gradually starting with easy 10 minute walks and then built up from there when they felt easy.

Now nearly 2 years later I am doing all the things I used to do before I became ill but it changes your perspective on things.

[UnfitNoMore in reply to Hidden]

It sure does. I used to be an athlete at school and was very fast over 3k, then my knees got injured playing ice hockey... several comebacks failed and my surgeon said I couldn’t run again. 30 years later medical opinion has changed and I was told running could be good for me. So, I started couch to 5k and wow, 60 seconds of running was almost impossible... getting back into it was a tough journey... now I’m training for a half marathon, the 30 year pain in my knees is gone and I’m enjoying myself again, but I run a lot slower these days. I’m lucky to be able to do it at all... original predictions were that I’d need new knees in my 30s, I’m 47 and no titanium is being discussed.

Walking is something I was able to enjoy in the 30 years... I just love being outdoors, especially when it’s not sunny!

Building up slowly is the key to all exercise I think, keeps injuries down and it’s more fun to not push yourself constantly. It’s not about how much you can do compared to anybody else, it’s about enjoying what you can do at the moment, and enjoying there progression.

[Icandothistoday in reply to UnfitNoMore]

How did you find motivation?

I am struggling to find my. I find it easier not to do it than to do it as it's so much effort and painful. I am on holiday at the moment and just walked but only managed 45 seconds and now I could cry any never stop. I have been to councilling for head things but depression and other related issues have been ruled out. The outcome was "you are simply fed up of being fed up" which sums me up completely.

I am on holiday and struggling to enjoy it due to my inability to either stand or walk.

It's certainly draining

Appreciate all replies and help/support

[UnfitNoMore in reply to Icandothistoday]

It is easier to not do it. I had to engage my stubbornness for a few weeks and virtually drag myself out of the house.

45 seconds is a start... maybe do that a few times a day and rest a little.

When I started running again I had to forget about what I could do in the past and accept what I could do right there and then, which really wasn’t much. Once I stopped thinking back it was a little easier to push forwards.

[Icandothistoday in reply to UnfitNoMore]

Thank you this advice. I have screenshot it so I can keep reading over it to motivate me