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How did you get bedbound?

Discussion in 'General ME/CFS Discussion' started by Strawberry, Mar 30, 2015.

  1. Strawberry

    Strawberry Senior Member

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    Seattle, WA USA
    I am curious of stories of how people ended up bedbound from doing too much? I have been pushing too hard for 3 months, and I know it. But I didn't have a choice as I had to move. Actually I am not done moving as I have crashed!

    Was it an overnight thing where you woke up unable to move? Was it a slow spiral?

    People here have been warning me to be careful, and I AM trying. But somehow I MUST pack up the remainder and get it moved. But I also would like to know how badly I am damaging myself, and see if there are any warning signs I could watch for.

    Thanks in advance!
     
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  2. redviper

    redviper Senior Member

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    I wound up bed bound almost immediately after the onset of my viral illness, probably 3-4 weeks. Since then it's been a slow progression to house bound with the occasional period of improvement. Hopefully that positive progress remains.

    I understand your situation, it's a delicate balancing act. Maybe take planned breaks between your tasks? hot baths and tea? You won't be doing yourself any favours if you push too hard and end up dealing with a massive crash. However, I can emphasize with your situation, it's so frustration not being able to push yourself as hard as you would like. Be kind to yourself in the coming few days, you are obviously dealing with a physically (and likely) mentally exhausting situation.
     
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  3. halcyon

    halcyon Senior Member

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    PEM is the warning sign. Don't push through it. Rest until it's gone and then do less than whatever amount of exertion triggered it before.

    I did it by doing a small amount of cleaning around the house over the course of a few days, and then trying to walk a short distance after that. I tried to ignore the PEM after it developed on the first day and just kept pushing. My autonomic issues became much worse immediately after that and haven't gotten much better 6 months later.
     
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  4. ahmo

    ahmo Senior Member

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    I'm sorry to hear of your crash. During the past few months I've been on the edge of crashing several times. What's saved me (in addition to being keenly aware of experiences posted here by others) is implementing an antioxidant strategy based on Martin Pall's work. You'll find a link in my sig to his websit, listing many helpful supps.

    I've added AdB12 at times, Acetyl-L Carnitine (ALCAR), and especially resveratrol. (I've found that my body prefers a combo of knotweed +red wine extract resveratrol, using both Gaia and Bluebonnet brands.) Also carrots: for a couple months i've been consuming approx 1 kg carrots/day. When I've felt that crashy feeling, I ate more and was ok. Finally I looked at the list again, and in the last day have switched from carrots to olive leaf tea. And it's working a treat.:thumbsup:
     
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  5. SDSue

    SDSue Southeast

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    We all say the same thing. "I don't have a choice". That's false. We all have choices. We just don't see it that way until it's too late and those choices are taken away.

    I "had" to work. I "had" to move. I "had" to drive my kids to school. I "had" to prepare food. etc etc etc. The truth is, I didn't "have" to do any of those things. I chose to do those things. I could have asked for help but I was extremely independent and loved being so.

    I don't know if it's humanly possible to stop doing things while we still can do them. It's against everything in our prior experience and for me there was a lot of denial going on. I was going to be different. I was smarter and would figure this thing out. I didn't deserve ME/CFS so wouldn't get it because I hadn't done anything wrong - surely those other people had made some mistakes that led them here. (clearly, I was an idiot!)

    It was a slow spiral for me until I reached a sort of critical mass, then I went down fast. The crashes occurred more frequently and lasted longer until there were no more good days. Once I never felt well anymore, it was too late. Unfortunately, no one can tell you when that will happen. No one can tell you which crash will cause long-term damage.

    Hindsight likes to tell us we'd do differently and not end up so sick, but that's a tall order considering how many of us still push and crash when we get a little energy. This disease has a helluva learning curve!

    Don't wait until you no longer have choices! I'm rooting for you. :thumbsup:
     
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  6. SOC

    SOC

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    I PEMed myself after a recent move, even though I consciously did the minimum exertion I could manage -- hired movers to do most of the packing and, of course, the actual moving of furniture and boxes.

    My PEM takes 4-5 days to hit. I feel pretty much fine between the exertion and when the PEM hits, but when it hits, it's rapid -- from fine to crappy in several hours. For me, the PEM lasted about 10 days during which I had to cut my workload in half (I should have taken the entire week off, but I can't afford to) and spend all the time I wasn't working in bed. But it cleared up after that; it wasn't a permanent return to bedbound.

    If you are already crashed, I don't think you need to look for any more warning signs. That one is a huge red flag. You should NOT be exerting yourself further. If you have no choice, you have no choice, but expect to have a long recovery period. We're all very different in terms of the severity and length of crashes, so there's really no way to predict beyond your previous experiences, and even that is not always reliable.

    When I crashed to bedbound, it was from catching H1N1 and developing pneuomonia on top of continuously overexerting myself in a mild way. It wasn't just a single extreme overexertion.

    In the early years, when my daughter had mostly mild ME, it appeared that she was able to shorten her PEM episodes from weeks to a single week using Martin Pall's supplement protocol, which @ahmo mentioned above. That didn't particularly work for me at the time, but I was more severely ill and in a constant state of PEM.
     
    Last edited: Mar 31, 2015
  7. Debbie23

    Debbie23 Senior Member

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    Sorry for a long rambling post, I'm having trouble editing my thoughts and I wrote this in two bits, hopefully it still makes sense!

    As to whether it was an overnight thing. For me, yes and no. I'd been okayish in health as a kid, I didn't have perfect health, prone to infections, asthma etc. But definitely didn't have ME as I understand it now, till I caught something which I had no idea what it was when was about seven and till I started periods aged nine, when my health really started going down hill, it turned out I had endometriosis and I was really ill with that from the off. But after those two things I went from being a healthy enough kid in general terms, who'd walk for miles and miles and miles okay etc. Because we didn't have a car and used to walk for recreation when I was little, to being very unwell pretty much all the time. If there was anything going round I'd catch it and couldn't seem to get rid of it for weeks, and often would just spend days in bed completely worn out sleeping pretty much all day for days on end. I wound up being home educated because school just became too much in all ways. After that I had been steadily declining over a past few months but was able to walk etc. It would, for example take me a solid week to recover walking to the GP on a flat, easy ten minute walk, because i'd just be so ill and exhausted in a way none of us understood, but I could do it even though I'd pay for it.

    Then I had to have surgery under GA for endometriosis when I was thirteen and it was suddenly a really steep, rapid decline after that, but I could just about still walk etc. Like to the GP as I say above. It it would make me ill for a week, or be able to walk downstairs but then would be restricted to the sofa all day completely lacking any energy at all. Then one weekend, almost exactly a month after the operation, I was able to walk into the garden and sit in the swing seat but it took me all day to be able to walk back, the next day I could just about crawl from my bed to the toilet, the next day I couldn't stand at all unaided, was having trouble staying conscious, talking when I was etc. Etc. I had very severe ME at that point and for a good few years after and it was that dramatic decline that lead to me being diagnosed by a consultant rheumatologist after my GP got me taken into hospital as an inpatient. He'd already suspected ME and was in the process of referring me to a paediatrician to confirm it, but this total collapse sped everything up as I got taken into hospital for a spell.

    In hindsight I was ill for a very, very long time before this collapse, with which I now recognise as ME, again I think from the age of about seven. but because no one knew it or understood what was happening, I think I wound up bed bound because I just over exerted for years and years till I had that operation and I think my body kind of went 'woah, that's enough!'. I've now improved to having severe ME rather than very severe, but that seems to be what I'm stuck at and it does make me think that over exertion for all those years did some damage that my body can't heal, I've never been past being severe since then. I've been housebound, except for sporadic outings in the year, which make me really ill but I sometimes have to do for the sake of sanity or to see dentist, optician etc. I've been totally reliant on a wheelchair, inside and outside home. And pretty much entirely bed bound. Even sitting in an armchair is exhausting to me, I really struggle to maintain posture etc. But I've managed to get a specialist chair that helps, meaning that I'm not technically bedbound because I'm not stuck in bed anymore, but I would be without this chair if you see what I mean.

    I think Sue is totally correct about choices, they aren't always easy to make! I very rarely leave my bedroom because typically speaking I'm just not well enough and to me it never seems like a sensible use of energy give what little I have of it. I'd rather use the same amount of energy in my bank to read something as in really read it and actually take in what I've read!, or watch something, or play a game,for a short time, or chat on the phone to my sister, or talk to people on here, or store it to go out somewhere every now and again, or before I had to take a break do a bit of study etc. etc. it just never seems like a good use of energy to me to use energy to go downstairs just to say I have done, if that makes sense! If I leave my room it's usually for a specific outing for which I've stored up a ton of energy as best I can. So maybe I should say I'm 'bedroom bound'. I choose to stay bedroom bound because I can actually have the energy to be able to engage in some sort of activity while in my bedroom, rather than leaving my bedroom and that being the activity I do. It's a case of either/ or for me, I can't have both, I've tried.

    It's deeply frustrating when you want, and indeed need, to do so many things in life to be so restricted but I am very, very aware when I over do things just how easily I could slip back to being very severe. I really got scared at the end of last, start of this year, I could feel myself declining in a way that was scary because I had to over exert, which was unavoidable. Honestly it terrified me. I'm still very delicate now, and still feel at risk of it at times, but I'm hoping careful pacing will help me to improve. I'm not perfect at pacing, I get very frustrated with how restricted I am I get very tempted to prove myself wrong about my limits and 'try harder' despite knowing that's destructive. I get tempted to just 'push through it' despite knowing better and despite feeling so delicate. It's tough! I think people on the outside don't realise just how tough it is to stick to disciplining yourself to stick to your limits. But it's true that if you pace you can actually achieve more than if you push yourself on and tell yourself too just push through it, just get it done etc. This is something I'm definitely finding. So I'm hoping these wobbles where I'm tempted to 'push through' something, rather than break something down into chunks I can cope with, and where I don't pace properly happen less and less. I'm also having tests done by Dr Myhill so I'm hoping that helps too.

    So My advice would be to pace, pace, pace! And wherever possible get some help and support. Will be thinking about you, Strawberry, I really hope it all works out.
     
  8. worldbackwards

    worldbackwards A unique snowflake

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    It was a slow spiral (and my understanding is that the main cause of severely affected ME is not resting properly early on, I think there was some research, others will know).

    I became ill in the second year of university. For the first few months i kept traipsing back and forth to the doctors to be told that there was nothing wrong with me - eventually I was sent to a psychiatrist who's first words as he entered the room were "I don't believe in ME" - it was the first time I'd heard the term or anything to do with the illness, but I was pretty sure he'd made his mind up before entering the room and I didn't return. At this point the main symptoms were extreme heaviness and fatiguability of muscles, making it harder (though not impossible) to walk, plus no sleep, pain in limbs and body, palpitations, funny hot spells, new allergies, generally feeling unwell and all worse after exertion, which layered up over time as I didn't really rest.

    At first, I wasn't really given a choice over what to do - everyone expected it to go away or thought I was putting it on - I became depressed during the early months of symptoms due to the stuff I had to give up, in terms of social life and reactions to stuff as well, which didn't help other's impressions of my illness, though I got through that fairly quickly.

    By the time I was diagnosed, which was getting on for a year on, I was developing the symptoms that would dog me ever since - numbness, cold and extreme, painful heat in the hands, severe reactions (MCS), increasing and disabling muscle pain, severe cognitive dysfunction, blurred vision. At this point, my mum realised that things were serious and, amongst others, advised me not to return to college. I, thinking that I was still moving and that the doctors had said that it'd just go away, thought, 'well, I'll get my degree first and then I'll rest up'.

    After about eighteen months in, the pain was so severe that I couldn't walk further than about ten minutes before it started to get unbearable and I'd have to sit down in the street where I was. I was barely eating, because I was reacting to everything and my body wasn't dealing with heat at all, which meant that all hot foods were leaving me in severe pain, and I lost about 6 stone. I got signed off college at this point. After a period in hospital, where I was patronised for a bit, someone told me some books to get and I finally found out how I should manage my illness (up until then, I'd had vague hints of 'just do what you can and try not to get too tired', or the timeless classic, 'keep busy').

    By this point, I was stuck in bed or on a couch most of the time, feeling permanently awful and struggling to get about, but I found that it was still impossible to find a level of activity where I could get a balance with my symptoms - everything seemed to exhaust me or make things worse and the constant switches from hot to cold were unmanagable and exhausting in themselves - my symptoms themselves wouldn't let me rest, on top of the chronic insomnia and all.

    In the end, I found herbs and acupuncture got them under control to an extent, but I was still in bed for about 12-14 hours of the waking day just to keep things at all under control and the symptoms were so complex and awkward that it took nearly a decade before I managed to sort things out sufficiently and understand what best to do to make any progress. During this time, I could read easy books on a frame and watch a little easy TV (both limited by severe concentration difficulties), walk around a bit on flat ground in the quiet (no distractions, couldn't go far) and played guitar very slowly.

    That was all I could do for ten years. There were brief periods where I could listen to music and hold conversations for more than 30 seconds but these came and went. I've been extremely fortunate that my Mum (WHO IS A SAINT) has looked after me all this time and, compared to some here, has given me relatively little bother regarding disbelief - God knows where I'd be now otherwise.

    I'm still housebound, though I've come back a fair way - I can look after myself a bit now and concentrate a bit as well. My greatest achievement is being able to get upstairs to the toilet all day, instead on having to sit on a commode (often in a bucket of piss), which I did every day for fifteen years.

    DO NOT GET LIKE THIS.

    Sorry for rambling on, but when someone asks a question like that it all come tumbling out; it's not like anyone else gives a shit is it? Call it therapy.
     
    Last edited: Mar 31, 2015
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  9. Valentijn

    Valentijn Senior Member

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    I've only been bedbound due to OI. There was no apparent trigger - just suddenly I couldn't sit up without feeling like I was on the verge of passing out. I've had three of these episodes, lasting between 3-8 weeks I think, over the past 4 years. They seemed to resolve on their own eventually.
     
  10. ukxmrv

    ukxmrv Senior Member

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    @Strawberry

    There was something Dr Ramsay (old ME doctor) said about post exertional symptoms that rings true for me. He said that if one further exerted after the initial bout without recovering then that made it get harder and harder to eventually recover.

    So if I need to move home I try and space all my activities with lots of rest inbetween.

    I know that this is easier said than done of course. I did a graded exercise course early on and this gradual increase in exercise over time put me back into bed again and I never fully recovered from doing it.
     
  11. Dr.Patient

    Dr.Patient There is no kinship like the one we share!

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    From a recent move I did in September, my illness got worse for about 4 months, even though I did no heavy work myself. The steady progress I was making for 4 months prior to the move, came down with the move and has lasted 4 months.

    My advice, take only your very personal things and memories with you, and just leave. If you do anything more, you will crash for months, and nobody knows if it's going to be permanent.
     
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  12. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    I have not been bedbound for long periods. But was nearly (still could barely manage bathroom and sitting up on sofa to eat at worst 1x per day no more than 20 minutes) for a short while due to an "extra" infection and complications from it.

    I've had major deteriorations that I've not recovered from, some sudden and some from overdoing over time (like moving house). But so far most of the time I can at least walk across the house a few times a day, inside.
     
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  13. L'engle

    L'engle moogle

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    Moving house seems to be one of the real danger points. I'm not bed bound but it is good to read these. thanks all for sharing.
     
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  14. Sushi

    Sushi Senior Member Albuquerque

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    The scary thing is that you can go for years, overdoing and then resting and recovering to baseline...and then one day you overdo and don't ever regain baseline--at least I haven't in 9 years. Not so say I haven't regained some lost ground--I have with good treatment--but I have never returned to the level of functioning I had before the major crash 9 years ago.

    For me, I had been overdoing on a regular basis for at least a year--due to circumstances I thought I couldn't control--but the crash happened overnight. I literally couldn't walk across the room the next day.

    Sushi
     
  15. alex3619

    alex3619 Senior Member

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    Sometimes the choice is between bad and worse. Like I can choose to overexert on a bad day so I can have a healthy meal, or I can not eat or eat something less than healthy, like cracking open a can and putting a fork in it without even heating the "food". Indeed in the past when I was still eating wheat, and had a really bad time and couldn't cook, I would order home delivered pizza. This used to happen several times a year.

    I have never been bedbound from ME for more than a few days. I have been mostly housebound for several years in the 90s and for about 10 years to date. Overexertion and going vegetarian were my two main triggers. I suspect the vegetarian angle was because of insufficient protein and B12.

    Moving house is the big one for me. The choice can be as stark as move or become homeless. If you don't have enough money to pay for movers to do everything, or to do that and pay bond etc. on a new rental, then you have to do it yourself. This caused my 2005 crash that I have not recovered from.
     
  16. Sidereal

    Sidereal Senior Member

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    Same thing happened to me a couple of years ago. Cumulative damage over the years followed by a sudden crash after a viral infection where I went from activity level 7-8 to 1 within days. I've not recovered since, though I've clawed back some functionality.
     
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  17. SDSue

    SDSue Southeast

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    I agree. Even after I became gluten free, I had to order pizza many times just to eat. At my worst I crawled to the door to wait. Dark days, indeed. I've also eaten my share of cold canned food (still do) so I understand the need to sometimes overexert in order to eat something decent. But the big choices are long gone.

    The trouble with asking for help is that others don't always view our needs as important. I've often heard the old "something suddenly came up" excuse many times. This has taught me humility and the need to ask before I am in dire straights so I have some cushion. Sure wish I'd have learned to ask for help before I crashed to bed.

    Very well put!
     

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