Michael Crawford "fought off ME"

[heapsreal]

i know what u mean, but the top shelf stuff is what im referring too. In australia alot of meds, the basic stuff is covered by the govt but off label stuff is expensive, so it has its good points and bad points i suppose. When cfs gets recognised as a legitimate illness then we should get alot more stuff covered by medicare/govt here. Plus it would be nice to not have to go to work sometimes when im feeling crappy but somehow u soldier through it but i wonder if this sometimes is preventing recovery etc

cheers!!!

 

[Daffodil]

cher can still tour and make movies but has CFS. i think she probably gets those lymphocyte injections(?) or something in germany every 6 months..

 

[dannybex]

cher can still tour and make movies but has CFS. i think she probably gets those lymphocyte injections(?) or something in germany every 6 months..

Cher recovered at least a dozen years ago, if not more, using naturopathic and (I think) homeopathy, and yes, tons of REST, for several years.

 

[dannybex]

Plus it would be nice to not have to go to work sometimes when im feeling crappy but somehow u soldier through it but i wonder if this sometimes is preventing recovery etc

Hi Heaps,

If you have to work, then you have to work, but if you can stop, and your body is screaming 'stop', then it's probably best to listen to your body as much as possible. That's how Martha Kilcoyne and others recovered.

 

[heapsreal]

stopping can mean no job as well, but i manage and rest when on days off and alot between shifts, i just find it hard when the insomnia plays up and i have had 2 hours sleep and have to work 10 hours, i can and do pull a sickie when i need to but i cant to this too many times in a row. I am finding trying to exercise is a lost cause as it just drains what energy i have in my envelope, so at the moment my life is work and when not at work im a lizard lounge or sitting on here, lol. I will add some exercise(my scaled down version anyway) when im back on the cycloferon again. My job has always involved sleep deprivation anyway so sort of know what to expect but adding cfs to the mix isnt fun, those bloody bills keep coming in, lol.

 

[lucy]

I was reading "at the height of his illness he was exhausted by around 4pm each day", and wondered what a statistical top exhaustion would be here in this forum (so that not to draw early conclusions he maybe did not have me/cfs).

When my illness set on, I was exhausted at 10 a.m. and remember very clearly that at 10 a.m. I was feeling like after a hike in the mountains. Later when sleep problems added up, I was exhausted when I woke up (or when I got up as I could not sleep).

I wonder, for how many patients taking it off work and having a good time with the family has helped. For me - it didn't. Apart from feeling very happy to be on a longer holiday in a nice place, all fixed nicely nothing changed.

After last doctor I saw told me that maybe if I don't think I am sick, I won't be, I have tried that too (basically got bored of seeing the doctors, got lazy with all my systems I have invented to keep up), and in fact it made me worse. Being aware of my condition and managing it all the time, doing less than I can, helps me to stay much better.

In any case, I suppose work is recommended only if it makes one better from the perspective of health (not money) and I can imagine few jobs of this kind.

 

[SilverbladeTE]

Lets remember that

1) ME comes in various severities, most are NOT bed bound, thank God.
2) It often does vary over time, getting better or worse
3) Michael Crawford was extremely fit, giving him an initial "head start" help, as it would with any illness.

so even though I may think the article's "loving it up cause he's famous", we do have to rememebr it's not all simple, one size fits all, for ME

 

[Nielk]

I was reading "at the height of his illness he was exhausted by around 4pm each day", and wondered what a statistical top exhaustion would be here in this forum (so that not to draw early conclusions he maybe did not have me/cfs).

When my illness set on, I was exhausted at 10 a.m. and remember very clearly that at 10 a.m. I was feeling like after a hike in the mountains. Later when sleep problems added up, I was exhausted when I woke up (or when I got up as I could not sleep).

I wonder, for how many patients taking it off work and having a good time with the family has helped. For me - it didn't. Apart from feeling very happy to be on a longer holiday in a nice place, all fixed nicely nothing changed.

After last doctor I saw told me that maybe if I don't think I am sick, I won't be, I have tried that too (basically got bored of seeing the doctors, got lazy with all my systems I have invented to keep up), and in fact it made me worse. Being aware of my condition and managing it all the time, doing less than I can, helps me to stay much better.

In any case, I suppose work is recommended only if it makes one better from the perspective of health (not money) and I can imagine few jobs of this kind.

In the beginning of my illness I kept working even though I was falling apart. I kept pushing myself because I didn't
want to give in to this disease. I had to keep taking sick days off till I just couldn't go in any day! I could not
get out of bed.
Staying home in bed was physically of course easier but, mentally I had a very hard time accepting how sick I was.
I also had all this free time for my mind to concentrate on my symptoms and pain.
Staying home did not improve my illness. I just didn't have a choice in the matter. Psychologically, it was and is devastating.
Like many of you, I'm sure, I was a very active person. Working full time and caring for my three children. I took care of the household and babysat for my grandchildren.

All this had to come to a stop. I have not recovered while "resting". I have some better days when I can get out a little bit
and walk a couple of blocks. I can go for a short drive. I still can't stand for more than 5 minutes. Can't go to any social events or to synagogue.

Maybe there are people who recovered or at least improved by not working and resting but, it hasn't worked for me.

 

[justy]

Me neither. I have rested my ass off! still feel exhausted ALL THE TIME. everything i do makes me exhausted. I have given up resting myself better and just bimble about all day.

I know that there are different severities of M.E. I had a remission for about 10 years where i was only very mildly affected, inbetween two severe bouts (not in remission now sadly)
My point is its all very well saying he got better by swimming and playing with his grandkids etc and saailing and fishing. These are all very demanding activities that i could have done when i wasw only very mildly affected, but then i wouldnt have felt the need to take 6 years off work either. Surely its not that abnormal for anyone leading a busy life to feel exhausted by 4pm? It could just be though that im crazy cos i have no idea what a normal life really is anymore.
Whatever, im glad hes better, and ive always liked him.

 

[xchocoholic]

I totally agree with most of what's been written here. Heck if we could get a paid vacation, I'd go for it. How do we go about making that the "standard" ? ; ) ... It sure beats what they're doing for now.

There's definitely a stigma attached to this illness. In fact, 5 years ago, when I was first diagnosed as a celiac and asking all kinds of questions ... one of the nurses at one of my doctors offices, told me that I had been "VINDICATED !! And that I should just be happy and consider this A GIFT. And to stop asking what else gluten had done to my body." Vindicated ... as if I'd been cleared of a committing a crime ... Right then I understood why I'd been treated with such disrespect over the last 15 years ... How many people think this way ? And how did things get so screwed up that people think this way ? Who's responsible for this mess ?

FWIW. I've always felt better when I could just sit around and rest. The problem is that eventually, I have to go to the grocery store, post office, cook, do laundry, etc and then I get PEM again. It's a vicious cycle ... tc ... x

 

[taniaaust1]

In the beginning of my illness I kept working even though I was falling apart. I kept pushing myself because I didn't
want to give in to this disease. I had to keep taking sick days off till I just couldn't go in any day! I could not
get out of bed.
Staying home in bed was physically of course easier but, mentally I had a very hard time accepting how sick I was.
I also had all this free time for my mind to concentrate on my symptoms and pain.
Staying home did not improve my illness. I just didn't have a choice in the matter. Psychologically, it was and is devastating.
Like many of you, I'm sure, I was a very active person. Working full time and caring for my three children. I took care of the household and babysat for my grandchildren.

All this had to come to a stop. I have not recovered while "resting". I have some better days when I can get out a little bit
and walk a couple of blocks. I can go for a short drive. I still can't stand for more than 5 minutes. Can't go to any social events or to synagogue.

Maybe there are people who recovered or at least improved by not working and resting but, it hasn't worked for me.

But what you think as resting may not be what another thinks of resting.. some who recovered or recovered some, spent YEARS resting before they started to improve. I know in my own case it takes a long long time of taking things very easy (and making sure never to push myself, it only takes once of doing that to be back at square one again.) before I get any real improvement.

***i dont know how this relates to you at all, just pointing out that there is very different perceptions between people on what "rest" is***

I did something called "ART=aggressive rest therapy" for years (Included forcing myself to bed rest even when I didnt feel it was needed)

 

[helen41]

Staying home and resting hasn't cured my ME/CFS, but it sure makes it easier to live with. The pain, insomnia, burning and brainfog all decrease. The problem is the high price of comfort, which is staying home and resting 24/7.
I don't believe money cures this illness, but it sure makes management easier. If someone cleans your house, mows your lawn and does your laundry, you are able to spend your precious energy elsewhere, on something that nurtures you.
On the next tier, if you are wealthy, the physicians, lab tests, prescriptions and nutritious meals will all arrive at your home as you need them.
I suspect it is much harder to recover as a single parent with young mouths to feed.

 

[me_is_realist]

Yep. Facts all cockeyed again, you can see why they are so authoritarian

 

[sleepy237]

"But as he relaxed into his new lifestyle of sailing, fishing and playing with his five grandchildren, he gradually found himself with more energy."

If only we had the energy for these leisurely activities huh....shakes head, wish we could find a celebrity with the incapacitating form, thanks Silver ~Ssleepy

 

[SilverbladeTE]

Sleepy
wish I could go sailing, fishing, and well, get to work on making grandchildren anyway! (Would love a lot of sprogs, but even bringing up a puppy is major nightmare now, sigh)

I do think that relaxing etc in the early days will have a positive impact for many, since as we know, stress makes it worse, so someone who's got it Light or Moderate, can easily make it worse by getting, quite understandably, stressed the hell out (which eventually happened to me)


my pleasure, Sleepy

 

[Little Bluestem]

A lot of the people that have money and then come down with ME avoid the diagnosis because of the ME/cfs stigma. They can push off the diagnosis for years and I'm sure they are hoping that things will change, but it hasn't yet!

Someone should TOTALLY do a randomised control trial on that!

Are you going to be one of the controls?

 

[SickOfSickness]

I am upset if someone thinks we can just rest and be cured. However, I wonder. If within months of becoming ill, we all could have almost zero stress around the clock, eat very well (including freshly caught fish), breathe fresh ocean air and not chemical fumes, live in a place where maids kept the place very clean (guessing he had cleaning help, or saying it is beneficial), laugh with kids that we love, see at least one friend a day, be outdoors as much as we felt we could, rest any time we wanted, etc. I think a good percentage would recover with optimal conditions like this. Particularly those with good health before they got ill. However, realistically few of us cut back on stress, let alone live nearly stress-free. It would be nearly impossible for most people to do it. And he probably had some expensive supplements and treatments that helped it along.

 

[Little Bluestem]

Don't most with ME wake up exhausted? And isn't sailing, fishing and playing with grandchildren out of the questions for an "average" person with ME. Sounds to me that if he did/does have ME, then it's probably a relatively mild case, and he found effective ways to control his symptoms.

Havent most people with ME been sick for years, if not decades, often going undiagnosed for much of that time? Hasnt the average person with ME been declining in functionality for years and decades?

Crawford was diagnosed almost immediately. I think it safe to say it was likely a mild case. After trying some conventional treatments he headed for New Zealand and changed his whole life routine. He said when I was tired I just stopped and that his recovery happened slowly. He did not say how much fishing, sailing, and playing with the grandkids he did, particularly in the early years. That may well have happened slowly.

If we had all been able to just stop whenever we were tired, Ill bet we would have fared much better.

I was reading "at the height of his illness he was exhausted by around 4pm each day", and wondered what a statistical top exhaustion would be here in this forum (so that not to draw early conclusions he maybe did not have me/cfs).

When my illness set on, I was exhausted at 10 a.m. and remember very clearly that at 10 a.m. I was feeling like after a hike in the mountains. Later when sleep problems added up, I was exhausted when I woke up (or when I got up as I could not sleep).

Theatre people work late into the night, so they may not get up very early in the day. 4pm may not have been very long into his day. There was no later for him. He went to the beach in New Zealand to rest and recover. If your illness had been recognized and aggressively treated when it set on, you might not be waking up exhausted (as am I).