I wish this was my bed.
I’ve been spending a lot of time in bed, recently. This is unusual for me. Usually, I’m ON the bed but not IN the bed. I see a really big distinction.
On a normal day, I’m out of bed in the morning and on the bed in the afternoon. If I’m on the bed, it is usually because I need to have my legs up and my dog close by. The couch is just not as restful and comfortable as my bed. I might be reading or knitting or just listening to music, but being on the bed doesn’t mean I’m having a bad or low-functioning day. I might even nap with a blanket thrown over my legs, but I’m able to get back out of bed at dinner time. And after dinner, I am almost always on the bed – again for the physical comfort factor.
Being IN the bed is completely different. In bed means I am under the covers, and almost always lying down. If I am in the bed during the day, I’m crashing. It means I’m in pain, I’m unable to think or concentrate. Actually, it looks like this. I’m not reading or knitting. I might be looking at the tv, but it’s unlikely that I’m actually watching it with any concentration. In bed + day time = bad news.
This in vs. out distinction never struck me as remarkable until a few weeks ago. More often than not, I’ve been in bed, under the covers and done for the day, by 3:30 pm. This was happening even before my post-IOM meeting crash. I was just done. There were things I needed and wanted to do, but I couldn’t – could not – do anything except collapse in bed.
Part of the issue is cognitive activity. There are advocacy issues sucking up huge amounts of my energy (including IOM and P2P) and causing increased stress. And the other issue has actually been my desire to test treatment benefit. I’ve been getting weekly saline infusions, and they make me feel better, so I’ve been pushing a bit to see if it is improving my functionality (jury is still out on that one).
There’s a prevailing misconception among people who are not familiar with ME/CFS (and even some who are!) that patients stay in bed because they want to, or that we don’t push ourselves hard enough. I can only speak for myself, but this is not the case for me. As much as possible, I resist being in or on the bed. I resist napping. I push my body and brain to the limit every day. Not a single day goes by that I end it saying, “Gosh I could have done more today.” I might say I wanted to do more or I should have done more. But never once do I think I did less than I could have done. I am always always ALWAYS disappointed by what I didn’t do. I never choose rest or leisure over productivity – and probably to my detriment.
I tend to be pretty hard on myself, and I’ve been trying to force myself to stay out of bed. Or at least to just be on it and distract myself a bit. But it was no good. Each day I caved and got in the bed. Suffering doesn’t make much sense, just to be able to tell myself I wasn’t in bed. This is not a competition. If I feel that bad, I should take care of myself and not increase my suffering out of some misguided stoicism.
So when I felt it coming on again yesterday afternoon? I trusted that feeling, and I got IN the bed. Tomorrow is another day, and hopefully I’ll get back out of bed again. There are many ME/CFS patients who are so ill, getting out of bed is more of a dream than a plan. I’m lucky that it’s still my plan.
Read other May 12 Blog Bomb entries here.
Jennie I’ve thought about this topic a good deal in the past, so I am glad that you chose to write about it. I sometimes curse the fact that we have a two story house because I get lightheaded just going up and down, but I also often think how fortunate I am because the inconvenience of the bed being so far from the kitchen and back door (to let my dog in and out) keeps me from spending time there except for those days when I am IN bed. I’m also fortunate to have a reclining loveseat with a footstool so I can have my feel up. May you have less days IN bed!
Jennie — You may be in the bed more than you would like but my goodness you are amazing. Seems like most of us want to do “just that little bit more” until we can’t. Those of us lucky enough not to be confined to bed 24/7 have to learn to listen to our bodies and stop before the crash. For me cognitive dysfunction has always been my most distressing symptom so I truly appreciate all the analysis that you have been doing — on IOM, on P2P etc. The framework you provide helps my addled brain so much. I can well imagine the effort it takes. Don’t overdo it — easier said than done I know.
Aw thanks, Maureen! You made my day.
It’s interesting to see how different we all are, sometimes. Looking at your crash video, I don’t crash as hard as you do and it’s rare indeed that I’m IN bed, but on the flip side, I’d never dream of going out to meetings. Mostly, I’m a chair person. I’m in front of my computer or TV most of the day, though whether I’m playing mindless games or doing something cognitively challenging very much depends on my day. I’m learning to spend more time ON the bed, though, partly due to what appears to be hamstring tendonosis (presumably from my stairs…gods I wish we had a one-level house, or at least that the kitchen and bathroom weren’t on different floors).
Anyway, I have no idea where I was going with this, and I think I’m starting to ramble now. 😉 Hope you’re feeling better soon and are able to spend more time ON than IN!
I hope you feel some improvement soon. Never knowing how long these restraints in our lives will last is as much grief as truly knowing the realities of the disease itself. I hope something turns around for you very soon. You have contributed so much in the battle of wills over this disease.
Thanks Jennie,
A great distinction! I “set up life” on the bed many, many days–but this is still life. “In the bed” is several rungs down the ladder and is a very different reality.
Dear Jennie, I can empathise with your in/on bed thinking.
I have my bed, and I have a separate “day bed” which is a low futon equipped with a large custom foam wedge which, together with a lap-top and a separate keyboard at a different height, is set up to give prone computer operation with minimal visual and physical strain.
And if time is up for computer use I can just roll over!
” I resist being in or on the bed. I resist napping. I push my body and brain to the limit every day.”
I hate to go into Sergeant Wilson mode with someone I’ve not met, but
“do you really think that is wise?”
I was told the trick is to leave the body with a bit left at the end of the day, so there are little amounts of energy to start building recovery from.
No, I don’t insist, but I do offer it as a thought.
Chris, another 12th of May Bomb Blogger.
(who has definitely overdone it today!)
Chris, I KNOW it’s not wise!!!! I’ve heard the same advice about leaving something in the tank. But even when I’ve tried to do so, I haven’t felt any recovery or long-term benefits. Of course, that could be user error on my part. For me, the magic balance point would be doing enough to make it through the day without aggravating symptoms. I’ve never gotten good at regularly hitting that balance.
I should add that in no way do I object to you offering the advice! It’s very likely that you are right.
Jennie, you do an enormous amount, even if some of it is done while “on” the bed. You write this blog, do research, synthesize it, explain it so even your sister/fellow ME/CFS sufferers can grasp it. You keep us updated with developments with HHS, IOM, FDA and NIH. And you do it in an organized and cogent manner.
I have learned so much from this blog, and could just scream that I didn’t find it earlier. And I so appreciate it.
And you should be good to your body. I am someone who also has to be “productive,” and is sorely disappointed when I can’t do what I set out to do — even at home. Two weeks ago, I did one-half of the errands in my neighborhood that I set out to do, and I had to sit down in three places. I was disappointed, but then I realized I had accomplished 5 tasks.
On Saturday, I had to go to another library branch by cab, then got stuck in torrential rain, and couldn’t find a cab home. I walked in the rain for an hour (!) until I found a cab. I crashed 40 minutes into the walk, but had to keep going. And yesterday I had severe muscle pain, and was too wiped out to go out on the beautiful day. And today I had plans to do errands. I did two things online, and can’t go out. So, I’ll crawl back to being “on” my bed and watch TV and try to read a book. For the first time ever yesterday, I could not read a book, and reading mysteries has sustained me through thick and thin.
But then I thought about Saturday’s trek in the rain. I saw three children shrieking with delight to be jumping puddles and between raindrops. I sat in a cafe around my corner having tea, and people watching and chatting. Even though I got wet, I enjoyed my trip crosstown, which I haven’t done in years. There was a silver lining in the rain cloud.
But two days later, I’m still recovering. I’ll try to do a few tiny things at home, try again with the book. And I have lots of TV show dvd’s to enjoy, one set of which is hilarious. Humor helps.
An idea for those with two-story houses or in any home situation where you have stairs to climb – power stairs. We got a power stair for my mother and step father when they were in their 90’s so they would not have to leave their home for assisted living, which they both would have hated. It was fantastic. They never did have to go to another home (until Hurricane Sandy). They are not incredibly expensive (not sure of current prices) and can be bought or rented by the month. They still leave plenty of room for anyone to walk up or down the stairs. Can’t speak highly enough of the wonderfulness of this alternative to struggling with stairs.
Billie
Thank you for another thoughtful blog. I balk at being IN bed, too, so have a daybed futon that I spend most of my days ON, either slumped over my computer, reading, or crocheting. The distinction between being ON bed or IN makes me think of other dinstinctions, such as if I can make it to the grocery store one week but that’s my only outing does that mean I’m not homebound? If I’m homebound for two weeks and maybe should be in bed but instead stay ON the bed, am I bed-ridden? Is “bed-ridden” only for those among us who can’t perform any tasks of daily living ever? It’s all kind of gray.
So, I’m curious, what does everyone wear? I may be in pajamas and a robe most of the day, but I find that I try to get dressed in my psuedo-pajamas, sweats and a T-shirt, and spackle on lip stick before my husband comes home from work. This is not because he compels me to, just a way for me to feel less like an invalid. (What a word–invalid!–two meanings!)
I am picking up on your word ‘invalid,’ Carollynn–as you say it has two meanings!!
Yes, indeed–the HHS, CDC, NIH and affiliates have chosen to see the biological disease of ME/CFS as invalid–i.e., null and void–not counting, meaningless. That is the neglectful, deceitful and abusive treatment we have been getting over the last 30 years–right up to and including the present taking us straight to the IOM contract and P2P.
AND, all the while leaving us locked into this horrid life-stealing disease of ME/CFS–HHS, CDC, NIH and affiliates have left us with no meaningful treatments — instead of healthy productive active members of society — we ARE invalids–debilitated, disabled, sick, frail, housebound, bedridden and out of action–no life to speak of that resembles the healthy active every day normal life that we used to live and enjoy. Ohhh–the kind busy active full lives that you enjoy, powers that be in the HHS, CDC, NIH and affiliates.
We have no thanks for you in this grossly negligent and unjust treatment you have relegated for us persons with ME/CFS–truly leaving us as debilitated and invalids . . . in it or on it–bed, sofa or couch as the case may be.
This is exactly how I feel and an accurate depiction of my level of functioning, thank you.
I sympathize with the frustration about what the government and many in the medical community are not doing about our disease. It’s horrendous.
As far as getting dressed during the day, I put on comfortable pants and a long-sleeved cotton shirt in the cold weather, tank tops and shorts in the warm weather. I get hot very quickly and have to modify my clothes.
However, when I broke my arm in December, I couldn’t change clothes without help and it was very painful, so I remained in my nightgown for days at a time. And do this if I have another virus on top of the ME/CFS and just am too weak to change clothes.
I often get meals delivered as I’m often out of groceries and/or don’t have the energy to cook. So with delivery people coming by, I have to be dressed.
Sometimes days I need good dose of righteous indignation from a fellow traveler on this path. So thank you for that, Ess. But then I wonder if Ive inflamed emotions in a way that’s unhelpful too. If my words gave you strength, great, but if they zapped you of it, I”m sorry.
No worries at all, Carollynn; in my book reality and truth is the way to go! It’s just more ‘validation.’ 🙂