Interesting article on ME/CFS

[ukmsmi4]

Hi all, hopefully you're all having not too bad a day. Just thought I would share with you an interesting article that I found in one of the e-mails I get from an American website Health Rising that I have recently joined. It is a story about and by a young chap called Whitney Dafoe who is enduring a severe case of bed-ridden ME/CFS.

It is interesting and worth reading in its entirety, but be warned as with most of these articles, parts of it are tough to read. It does though offer some hope with regard to the research that is going on in the States. The article itself is on pages 20-23 of the publication.

Personally I found one of the most interesting (though distressing) parts was his description of an ME/CFS crash on page 22. Until now I have never been able to put it into words what my "volcanic flushes" really feel like and have always thought people who don't know the condition would think you are being really melodramatic if you told the truth. But there it is in black and white - an accurate description of exactly what it feels like (for me anyway).

paloaltoonline.com/morguepd...

If you are interested this is the link to the Health Rising website too cortjohnson.org/

I don't know about you, but much of it resonates with me. Let me know if you have any thoughts.

Take care of yourselves.

Margaret.

[ME65]

Hi there.

This is a sad account isn't it? The lack of support seems to be worldwide and downright cruel in cases like this. I was very ill 12 years ago, unable to feed myself and the few words I could say exhausted me to the point of tears and crying was even more exhausting. It has taken serious pacing and years of frustration to get where I am now and I consider myself very very blessed to have made enough of a recovery to be able to type this and do small things that enrich my life. I get those burning hot flushes too. Always worse and more frequent the higher my fatigue level. I have learnt to watch them come and go, knowing however fireiy they are at the time they do pass.

Lot's of love

[ukmsmi4]

Hi ME65

It is indeed a very sad account. I find it unfathomable how that such a large proportion of the population can suffer like that, or that people can be as ill as that and yet many, even in the medical profession, still seem to deny the existence of the condition. Let alone that it is massively underfunded and under researched.

One of my sisters has had the condition for much longer than me and she was bedridden for a few years and had to use a wheelchair for a few years after that. She had such a hard time back then (not massively better now) but that was 30 years ago. She was diagnosed even then but still 30 years later it still seems like we have to fight to get any kind of support. I just count myself lucky that however bad things may seem for me, I have never been that badly affected by it - yet.

I'm sorry to hear that you do seem to have had things really bad, you do have my sympathy. If you don't mind me asking, how did you get to grips with pacing. It's something I'm still struggling to do after 4 years. Did you find anyone to help with it or did you have to manage it yourself.

Margaret.xx

[ME65 in reply to ukmsmi4]

Hi Margaret

Pacing is the hardest thing to do. The mind constantly sabotages efforts to be so disciplined. I want to finish things I start and end up over-exerting myself and suffering. I also have the absurd idea that if I fit extra things in just before going to bed (am in bed all the time but you know what I mean) it will not count and I can get away with it! It's like someone who keeps touching a hot stove and keeps saying Ow but never learns not to touch the stove!!

However pacing has to be a priority with this illness. When I was very ill I was "active" for 10 minutes out of every hour. I had to be really strict to any progress so when a carer came in to help me wash I had to rest afterwards then eat lunch. As this all had to be done within an hour that was 2 of my 10 minutes used up so I had to rest for 1 hour and 40 mins before having any kind of stimulation, be it music, reading or watching clouds. After some months I was able to increase it to 15 mins in every hour and so on. Now I have a rest after my lunch. Don't wake-up properly til 10 anyway. About 4 I do at least an hour of meditation and rest as I need to between tv progs and computing in the evenings. What you do as activity has to be very organised too. Reading is obviously not as demanding as pottering in the garden and must be timed accordingly. The trick is to work out your baseline. That is what you can do each day without causing any bad effects. Once that routine is established and you know what your comfort zone is you can try to increase activities in very small increments until they become part of your baseline. This will take a long time, as in years, so you have to be very patient with your self. It will be 2 steps forward and 1 step back and you do get times when it levels off for a long time and you can't increase your activity. Focus on what you CAN do and not what you can't. It's a constant learning curve and I still wobble around with it after years of practise but it 's the only way to make any progress.

Hope this helps.

Love Sandra

[ukmsmi4 in reply to ME65]

Thanks for that Sandra, it does help. Strictly speaking I know what you say is true, I just find it so difficult to do. I have been "developing" this condition for years, possibly even a few decades, getting worse over the years as stressful events and illnessess kept taking their toll. But it was only around 4-5 years ago when I had a big breakdown at work and the doctor found Epstein Barr antibodies in my bloods that she suspected post viral fatigue which then after many tests etc became a full diagnosis of ME/CFS. I haven't been able to return to work since my major stressy at work.

It took me quite some time reach a point where my mind was in even vaguely the right place to start to get to grips with pacing etc. Me being me I found it extremely difficult because I find it very hard to lose the mindset of don't stop till you finish the job - washing up or whatever. I was (for me) quite ill initially, not exactly bed ridden but definitely housebound so perhaps it was easier to pace because in a way I didn't really have a choice. Consequently I must somehow have managed it because I did seem to get a little better and by last year I was even managing to walk the 1.1 miles into our next village, get a few bits of shopping and walk the 1.1 miles back.

Then of course me being me, the success went to my head and I overdid things, I had to have an operation, I had huge battles with TCV (the local work program people) and a few big family events fairly close together, all in the space of a few months. All in all by the end of last year I had series of setbacks that took me almost back to square one and I just can't seem to get it together again. I'm back to being pretty much housebound again.

For some strange reason I am finding it even harder than before to get to grips with the pacing and I don't understand why. I know I can do it because I already have but this time it just seems to be alluding me. I guess it's not helped that all the setbacks put me into a big depression which I'm now being treated for but still seems to be affecting my ability to get my head in the right place. I just wish there was someone available on the NHS to guide us through this pacing malarkey.

Sorry for the whinge, I must sound like a right wimp. I know sort of what I have to do, I know I have to be positive, I know it's up to me to do it but I'm just struggling at the minute, despite telling others that you just have to dig deep. I need to practice what I preach don't I.

Thanks for the pep talk.

Love Margaret.

[ME65]

Oh, Margaret, no wonder you have had a relapse. Your nervous system can not take the stresses and strains of life that non-ME people can. I think CBT counselling would really help you right now. I found it a help and it was so good to have someone to discuss things with confidentially who understood the difficulties of living with ME. I got referred to an ME/CFS clinic and got a home visit with telephone support for 2 years. The ME Association has a list of NHS clinics. You should be able to get a visit if you are within at least a 30 mile radius and a phone call to your doctor would get you the referral. Failing that perhaps AfME or ME Ass. would be able to suggest a private counsellor even if it's all by phone. Meanwhile you whinge and moan all you like, that's what we are here for!!

Love and a hug

Sandra

[ukmsmi4]

I was referred to the nearest clinic a few years ago which for me is in Bristol which is about 40+ miles away. From what I can tell on the ME Association site it looks like it has moved from Frenchay hospital but it is still in Bristol. I was only referred to an occupational therapist who confirmed the diagnosis and gave me a brief talk on pacing etc. Then because I couldn't manage the travel I had around 8 follow up phone calls with him but that was it. I never saw a consultant or anyone else.

As it happens I have secured myself a place on a CBT course especially for people with the condition starting mid September. But that is a group thing rather than one to one consultations. That is if I make it. The only more local sessions at the minute are 6-8 at night which is too late for me to be out and about and concentrating. So consequently it is in Cirencester which is around 45 mins drive away. I'm not sure if I can drive that far as I don't normally do more than just over a mile to the doctors or the local shops or maybe the 5 miles into town - and any of that only happens on a good day. My husband is very supportive and has agreed to drive me there and sit through the course with me and drive back again. Except he has a raft of his own health issues and recently had a heart episode which means he is likely to be referred to a heart specialist. And if that happens he won't be able to drive until his condition is diagnosed and stabilised.

Life with this condition is never easy is it. When you have a debilitating condition it becomes a vicious circle because your life is thrown into such turmoil that everything becomes hard work making you even more fatigued than you were before.

Thank heavens for supportive husbands and friendly forums.

Margaret

[ME65]

Hi Margaret

My nearest clinic is Bristol too. It is now situated in the new Southmead Hospital. I'm sorry your experience wasn't satisfactory. As for seeing a specialist - do they exist? Maybe it was a case of expectations. I didn't expect much so I was happy with what I got!! Unfortunately as there is no treatment it is a case of management.

I'm sorry to hear that your husband has health problems too. Getting older certainly doesn't make life easier.

I hope you can get to the course but if not perhaps you can read yourself into a good place. I have found some really life-changing books over the years that have helped me to get where I am now.

Good luck

Love

Sandra x