A "going to bed" question.

[Keela Too]

It was that article (that I found a link to somewhere in cyberspace) that made me open and read this thread in the first place! LOL Good article for Drs to read! Still not sure I could/would have taken it's full advice at onset - not even sure I can quite swallow it yet.

I mean if I were told - ok 6 months in bed and you are guaranteed your old life back - well Heigh Ho off to bed I'd go!

But it's a big worry that all I'd actually do is de-condition further (and that is pretty shocking already) and still have ME at the end.....

Right now I still have some moments when I can pretend I'm "normal".......

(Or as not-normal as I ever was!)

 

[peggy-sue]

"Deconditioning" is not that bad - I'm sure we are all pretty unfit.
Once you're a lot better, that can be fixed - slowly.

If you feel up it, you could try to find some stretching "exercises" you can do lying down, there are some gentle yoga positions that might help a bit.

At least with yoga you don't need to do aerobic stuff.

 

[Keela Too]

I went to one Pilates class - and was outshone by some fairly ancient OAPs ! LOL....

I do some of the body core stuff at home, but compared to what I did before it really is insignificant! I agree however, if I were suddenly made WELL, the deconditioning would get easily get fixed. I think that having been a more than averagely active person before has made being incapacitated both harder (coz I can't really believe anyone can be this disabled while looking so normal) and easier (because I'm mighty grateful to have done everything I could while I was able).

 

[SOC]

I'm about 18 months ill, and not recovering despite reasonable resting.

Exertion makes me worse, but resting has not made me any better!

After sudden onset, I spent 2 months flailing around looking for answers, before a doctor suggested "chronic fatigue" - googling that took me to ME definitions and I realised that this was my problem. (A private consultant confirmed it later.)

So I immediately worked on the premise that I should NOT push myself, and to avoid GET if offered. Luckily the Occupational Health Dr I first saw through work also impressed the rest angle.

So I had good advice from the start, and feel I have rested as much as I could all the way. Also, I was lucky to have few stressors (mortgage paid, hubby in good job) and so it would seem I had put everything in place to recover.....

But it ain't happening...... Gradual decline is still a concern and very frustrating.

I don't think rest alone is going to cure ME. We still need some treatment for what ails us -- in the vast majority of cases, at least. Rest will likely slow the decline and improve the effectiveness of treatments, so it is critical. It's just not a cure.

What seems like reasonable rest to you may not be enough. I thought I was getting a lot of rest the first few years I was ill. I'd cut back my activity by well over 50%, but I was still getting worse. Then I got an exercise test (CPET) and discovered that I was active above my anaerobic threshold (AT) almost all the time I was upright. When I reduced my activity so that I stayed below my AT, I was down to about 10% of my previous activity. Not only was I not going out, I couldn't even do any housework or walk around in my house much. I had to rest after climbing a half flight of stairs. I had to go to bed after a shower. It was a shock to see how much I had been overdoing when I thought I was resting.

Once I learned to manage my very limited activity to stay below my AT, I stopped getting worse. I also had fewer symptoms. I was not well, however. Treatments, in addition to rest, improved my condition from bedbound (after a severe decline from an H1N1 infection and HHV6 and EBV reactivations) to working part-time and doing light housework.

Very, very few of us get enough rest, IMO -- mostly because few of us have had the testing needed to know how much (or more accurately, how little) exertion our bodies can handle. And very few get even basic treatments that might improve our QOL, even if they aren't cures. I won't even mention how minute is the fraction of us that get treatments that might actually be curing something -- antivirals, antibiotics, immune modulators, and so on.

 

[Keela Too]

Thanks for your reply SOC.... I wish there was something that had a reasonable chance of success.

I got advice early on to "Do only 60% of what you can do without symptoms."
My trouble is symptoms are always 48hrs later. And if I'm "doing" something I feel great and want to do more. It has been a steep learning curve to learn to stop. (I use a Fitbit as that gives me some measure of how much moving around I've done).

So several times I've pulled back from what I thought was maintenance (but which I start to notice is a tad too much) to only 60% of that..... and yet a few months later that lowered level is also too much.

Right now I'm coming to terms with making another step down.... and I haven't had major symptoms in months... so for me just the mild ones are enough to do damage.

Sorry - I seem to have hijacked this thread. THANK YOU all for your kind and thoughtful comments......

 

[ukxmrv]

/We used to call it "ART" or aggressive/active rest therapy in the late 80's and that was what was helping people the most then we thought.

 

[peggy-sue]

@KeelaToo - I don't think you need to worry about hi-jacking Shell's thread.

Quoting her first post, bolding is mine.

"I didn't go to bed - had baby and other kids to take care of and even though I lost my four jobs I did manage to complete my MA (not sure how!) .
Anyway each time I meet an "I went to bed" person i wonder if I scuppered my chance of remission by not going to bed.
I know Nancy Klimas has said in the past that the best chance of remission is with "enforced bed rest".

I know it's a bit late - but, is going to bed the answer? If so, can we spread the news so that less people end up like me"

Shell started this thread for you, and others in your situation.

 

[Shell]

I know it's a bit late - but, is going to bed the answer? If so, can we spread the news so that less people end up like me"

Shell started this thread for you, and others in your situation.

Thanks Peggy-Sue that' exactly why I started this thread. I really really hope others will do the "go to bed" thing if, what Nancy Klimas and others have said is right. I have met at least four people with dx of ME or CFS who either went to bed - or go to bed regularly who are either in remission or doing a darn sight better than I am.
In a world where we are told GET/CBT is the answer and bed rest is seen as a deconditioning - giving in to the disease- lazy sod type of thing I am increasingly thinking going to bed, especially at the beginning is the best option. It's not a cure but ye gods and little fishes I don't like to see people ending up like me lol.
Keela Too it's still early days for you and SOC has made some good points. So try and do less.

Our dishwasher is bust, just the extra workload that entails is causing me to crash out . It's a stupid disease.
(typed from wedged-on-sofa position; an unpatented treatment)

 

[peggy-sue]

I do know a bit of a story about one lady, who was able, because of having a wonderful and supportive family who believed her from the beginning and they ALL worked on her agressive rest and pacing therapy, she posted updates on a small local forum.

She went slowly, from being bed-bound to being able to get up and walk a little, progressing with only prescribed and carefully measured exercise.

She did no housework or cooking or cleaning or shopping or organising the house or family, she had help to wash and dress herself.

She was slightly older, she had had her children, who were all old enough to help.

It did take time, but she's up and about and doing really well. Cycling and so on!

She was in a very fortunate position, very few of us get that amount of utterly dedicated help.


eeeek, Shell - how long until your dishwasher is fixed?

Can't anybody else do them until then?

Lifting the stuff in to and out of a basin and cleaning it is a lot of weighted arm-raising - with continuous movement while raised -

while being stuck in one uncomfortable and difficult-to-maintain, bent position.

I could not be without my dishwasher. It would be paper plates until it got sorted.

 

[rosie26]

I would advise strongly to lay down, if you should one day find yourself in severe M.E. You will find it is not a pleasant lay down, it is a living physical hell every second.
The body is in complete and utter uproar, you are bombarded left, right and centre with multitudes of agonizing symptoms. It's hard to hold on and get through every second. Sorry if this sounds dramatic, but Severe M.E is. Rest up.

I am now moderate, but I lay down every afternoon and evening !!!! That's where I am. In bed.

 

[Keela Too]

Thank you all for telling it as it is... believe it or not, I've given the same sort of message to others, but I'm much worse at taking it myself.

However, I imagine that without my amazing family I would be much worse by now than I am.

They have facilitated my every step downwards. I'm 50. Hubby and the youngest of our 4 "kids" just at home. I really don't now do any house work beyond a little cooking (and even then they wash up). I have mobility scooter as I don't walk more than 20 metres at a time. I have a comfy recliner chair that I spend a lot of time on. And I measure all my activity using a Fitbit which really helps me to avoid peaks in what I do....

I am lucky in that if I do little enough I can remain fairly symptom free.... I sleep relatively well at night, and I take a range of supplements that I think help me to stay sorta clear headed. I don't have major flares any more, and I rest up at the first hint of symptoms. (One of my clues is the slow eye focus thing...and a slightly tingly feeling to my skin... these are minor, but I know they are precursors of more - so I take them seriously.)

The toughest of course is continuing to rest when symptoms have gone.... right now they are not gone - they are not severe, but I know they are there, and so my concern about needing to down shift again.

Thank you for listening as I downshift whilst mentally kicking and screaming like a toddler....

I have listened.

 

[SOC]

Thank you for listening as I downshift whilst mentally kicking and screaming like a toddler....

Love the image! It fits me perfectly. My husband frequently remarks how disciplined I've managed to be making the horrible transition from never-sat-down active to severely managed activity. What he, and especially other people, don't see is my inner toddler constantly screaming at the the limitations. The words actually form themselves in my head, they just don't make it out my mouth or into my actions...
"I don't WANNA sit down!!!"
"I don't wanna take a nap!"
"I don't wanna take all these pills!"
"I don't wanna see another doctor!"
"But I WANNA go to that party!"

 

[peggy-sue]

Our fight against this disease it to fight the urge to fight it...
(tongue-twister for the day)

Keela Too - delighted to hear your chair is a recliner - keeping your feet raised when you are sitting saves your heart a whole load of extra work.

 

[Shell]

Well I've been sofa'd. I had what looks like another TIA on Thursday night. I can't walk much at all now and being upright even for a short time leaves me breathless and with terrible chest pain.
Wedged on sofa and hoping the fact that I've hardly done anything will sort it out a bit.
Went to doc as emergency but she wasn't much help.
Isn't this a lovely disease
I know plenty of people out there are much worse off than I am - but it's wearing me down.

 

[SOC]

Well I've been sofa'd. I had what looks like another TIA on Thursday night. I can't walk much at all now and being upright even for a short time leaves me breathless and with terrible chest pain.
Wedged on sofa and hoping the fact that I've hardly done anything will sort it out a bit.
Went to doc as emergency but she wasn't much help.
Isn't this a lovely disease
I know plenty of people out there are much worse off than I am - but it's wearing me down.

That's scary, Shell! I'm sorry to hear the emergency doc didn't help. Breathless and terrible chest pain shouldn't be ignored.

Are you doing anything that might help with OI?

 

[taniaaust1]

Shell if you are having to wedge yourself to be sitting up.. that probably means you shouldnt be sitting up at all right now. Sitting up can be extremely exhausting with severe ME.
....................

Im a strong proponent of agressive rest therapy as that is what took me into a 2-3 year full remission.

It wasnt something I just decided to do but something Id come to realise I just had to do, it was like a life or death thing for me so even thou I had young children I should of been looking after, I had them keep looking after me. I went from someone who was there for everyone, to someone forcing my young children to take care of me.

People probably wonder how I came to such a decision to do that. What had happened was I'd pushed myself the first year of this illness when it was on and off and I was going from being in bed at a time with like a very bad virus to being completely fine, only then to end up completely bedridden as I kept pushing over that year, trying to be a supermum etc. I didnt slow down my pace of life.

When I had the big crash for the 9mths, I was completely and unable to do a thing.. couldnt cook, couldnt clean, I couldnt even walk to the toilet or get myself a drink (those first 9mths in bed were no choice of mine to be there but I just couldnt get up and do things, my legs wouldnt support me, they'd crazily shake if I went to stand and I'd crash to the floor, I couldnt even hold my head up a lot of the time). I almost died due to the severely of that crash. I should of been on an IV and feeding tube (I couldnt even eat a full meal I was that weak) and it took me 9 mths to even "start" to pick up from that big severe crash.

Knowing it was the pushing which had nearly killed me .. I seriously feared for my life (at times I had been like comatose for 3 days at a time, not eatting nor drinking..not waking up, It's a miracle Im alive..drs had abandoned me when I first got diagnosed with this, I was too sick to even get to a dr.. and before I'd got to that point, they'd just shrugged and told me I had an illness which was completely untreatable).

I knew only too well that I just had to make sure I didnt crash like that again into this "untreatable illness" and hence when I then started to get very slightly better, I decided to still rest for a bit longer eg months longer to make sure I was getting better and wouldnt just crash right down to where Id been again. I saw that as a small price to pay if it would help me improve and if I felt like I was slowly improving even if I did feel very guilty for doing less then I could of really pushed myself to do and my 9-10 year old was having to do everything, be my carer and take care of her her little sister too.

If I didnt try aggressive rest therapy (something I hadnt even heard of at the time but an action I decided to do), I thought otherwise, my children may loose me and I didnt want to be a complete bedridden invalid forever!! I had to do WHATEVER it took to improve. I NEEDED to improve for my children. That all gives one enough motivation to stay in bed tosee if one improves.

When one gets to a certain point of improvement one knows its safe to be doing a bit more.. I slowly tested things out as I got more and more better. Years later .. of SLOW improvement and aggressive rest therapy to suit whatever level of the illness I was at the time,. I finally was in a FULL REMISSION. I even participated in one of the longest marathons on this planet (a 100Km run) while I was in remission without bringing on a ME/CFS flare.

Im sick now as after years of remission I thought I was cured and when I caught a virus going around I didnt then rest and got slammed by this illness the second time round. Then I didnt give up work (rather was forced into trying to work still by Centrelink who threatened not to give me any money if I didnt try to work) when I got this illness again and due to keeping working, I crashed down lower.. to where I are now where I need a carer to be looking after me. (IF it wasnt for Centrelink I may of been able to have paced myself back into remission again at that point or at least not have crashed further due to overdoing things).

Thank God Ive avoided crashing down to a permanently bedbound state again but it would be very easily if I pushed myself by doing too much to end up back where I was in the past.

Im slowly getting worst as I dont get enough support, Im overdoing things just to survive right now. To take care of my physical needs and emotional needs, Im overdoing it even with the severe life things cutbacks I make eg missing meals. 5hrs of gov paid home support isnt enough (if they had not forced me to keep working I wouldnt be where I am today where Im now too sick look after myself). Ive no idea what is going to end up happening to me (I think I had PTSD over this for a while but now Im quite accepting that I could end up dying).

So yes I do think some are not resting enough in the first few years of this illness and it can be sometimes very hard for some to realise just how much rest they may need as we all have things we see as responsibilities etc to do but in truth these may need to be given up if one wants to recover or improve. Its a choice we all need to make.

I choose to go without meals often then push myself.. as I know how bad pushing myself can be for me and it can take me YEARS to recover from a big crash. Pushing myself just isnt worth that risk. If I crash like I did in the past where I cant even get drinks (that does happen to me now at times with small crashes but not for long), I think I will die as I dont have my children now to take care of me.

 

[Shell]

Thank you both. I am semi-lying on the sofa - upright enough to breathe and down enough to stop the chest pain. What a daft life we live!
I am missing meals too Tania. Partly because it's too much hard work to eat and I can't swallow properly (again).
My kids are rising to the occasion. They are sorting the washing, vacuuming and tidying and my oldest dd is doing all the cooking. She's been doing most of it for a while now.
My lovely daughter-in-law came over friday to sort out the younger ones and make sure everyone was fed.
I am very blessed with the children.
I can stand up just a little better today, but I know not to push it.
Your support and sensible advice is a great help. I know you've all been through this and know what it's like.
to you.

 

[peggy-sue]

Shell, I'm feeling for you, Scared, lonely, (it is lonely being inside this disease)
I'm not able to come up with a reply suitable for expressing anything better than the others have said.

Can you get hold of nutritious drink meal replacements - things such as Complan or Fortran?

You can sip them slowly through a straw if you can suck hard enough.

I always keep these in the house for when eating is too much effort.

I'm thinking of you.

 

[meandthecat]

I wish I could rest more, my life doesn't seem to allow it, but I can stay the right side of the precipice if I listen to my body.

I thought that it was something that I was already doing when I became ill but as my life imploded and I was forced to look for answers I began to understand my internal energy economy and manage it better.

It took 3yrs to stop the slide and now 5yrs on I am close to full function, I have no intention of running marathons just walking to the shops and back without having to sleep for 2hrs is success for me.

As I tackle more I still have an awareness of the envelope that I live within, I may stretch it but doubt that it will ever escape it. Within the envelope, exercise has been vital and beneficial but every step outside draws down exponential payback. I cannot consciously define the boundary, only by listening to the quiet voice of intuition can I manage this condition successfully which underlines for me the impossibility of any health professional successfully intruding into this process.

I see exercise/ rest/ nutrition as so entwined that one cannot be assessed without reference to the others, for instance I use DHEA/ 7-Keto/ carnitine/ D-ribose to build muscle along with exercise to control OI. Other supplements and plenty of protein with less carbohydrate also help and as I become more resilient I can drink again which is still the best painkiller.

Every day is different and no ideology can handle this so I do what people have traditionally done for millenia, I cope....
which doesn't mean that I would turn down a cure.

 

[peggy-sue]

This is so much more elegant than my description...
"I cannot consciously define the boundary, only by listening to the quiet voice of intuition can I manage this condition successfully..."

Mine is more along the lines of;
"I listen to how loud the "uggggh" is, when I think about doing something."