This is a difficult post to write. Unfortunately I have to admit that there have been secondary issues thanks to being bedbound. These are things that are difficult to talk about. I’d like to shake off the idea of ‘deconditioning’, but of course we can develop secondary issues due to being bedbound or immobile. The idea that I am bedbound due to deconditioning is nonsense, but the longer I stay in bed the more issues that could develop. I thought I would outline some. Some won’t be solely due to being in bed.
My legs no longer go straight out in front of me while lying down without pain. If I am lying on my back they must be slightly bent and I often need to bend them further for comfort. This is due to tight/shortened muscles. Worse is that if I am sat up they want to bend to 70 – 90°. This poses a few problems. It makes sitting up in bed difficult. It will also cause problems with using a chair because due to orthostatic intolerance I need my legs up, but due to this I need to be partially reclined if my legs are up.
I also have foot drop which is where your feet point downwards. I experienced this prior to being bedbound too but back then my foot drop was floppy where as now there is restriction and pain in moving the foot to a flat position. This was helped by having a cushion at the bottom of the bed so that my feet couldn’t drop very far but I had to stop doing this when I started getting pressure sores and so now I have a heel pad instead which doesn’t do the same thing.
These problems are not inevitable in all bedbound people but they have possibly happened due to my inability to have even passive physio therapy to stretch my limbs as well as spasticity and the position I sleep in. I do what I can when I can but it won’t compare to someone lifting my limbs and moving them for me.
These problems could also cause issues should I learn to walk again. It’s another issue to overcome should I get to that point. In an ideal world I’d have brought these things up with a physio months ago, but as those with M.E and in particular severe ME will understand, physiotherapists rarely understand our intolerance to exercise/exertion and so as much as I’d love to be able to see them and say ‘these things don’t work for me, what else do you suggest?’ I know that in reality they’d likely continue to advocate the methods that would be harmful to my health except now I’d be seen to be uncompliant. Much better to let them forget I exist.
I don’t know what’s going on but my hip joint feels uncomfortable/painful sometimes and can be relieved by ‘popping’ it by bringing the knee towards my chest. This can only be done once and the leg visibly changes in length as I do it so I have no idea what is going on… But since my gp is so unsupportive, and I can’t do physio there is no point in bringing it up. One leg also looks shorter than the other when bent.
Pain from immobility
Pain from various forms of immobility. In particular my back can get quite painful. I’ve spent much of the last few years with my arms at either side of me and only moving towards my midline. It’s only in the last few months I’ve felt able to cross the midline and do things such as hug myself or reach one arm across my chest as a stretch – so my chest and back have cramped up. Also my body has spent years continuously in contact with the bed with only a few breaks of pushing myself away from the bed briefly. The ot I saw recently said that this can mean your body gets very sensitive and could explain the severe tingling pain I’ve experienced when using a hoist sling previously. Even briefly leads to pain for hours afterwards.
My muscles have atrophied. I have quite a bit of movement now but haven’t always and since I’m not weight bearing my muscles have atrophied a bit. This leaves the fat kind of hanging off places. This means I’ve lost some strength so that if I did improve functionally I might not have the muscle available to me to do the things I would feel well enough for. As ME makes exercise and exertion make me ill, it is very difficult to regain lost strength. Another hurdle should my health improve enough to be more mobile.
Worsened orthostatic intolerance?
One of the big reasons I’m in bed is because of orthostatic intolerance. I just can’t sit up without becoming ill. But now I’ve been in bed so long it’s inevitable that lying flat will have added some deconditioning induced orthostatic intolerance on top. I know that being hoisted would make me very dizzy and so would need to get used to that, but how can I know what is deconditioning and what isn’t? It’s very tricky. It’s all so blurry that I don’t even know if I am experiencing this, I can just assume so.
I live in a dark room so have little sense of day or night. I am in bed 24/7. This means sleep hygiene goes right of the window. It’s a struggle to sleep. In fact I’m writing this at 5am.
Future incontinence from catheter use
Before needing a catheter I was partially incontinent despite various treatments. However due to having had a catheter nearly 3 years my bladder will now only hold a small amount before it becomes painful and releases the contents. I never planned on having a catheter in this long. The future plan will depend on a few things. E.g whether I am well enough to manage pad changes, whether the incontinence can successfully be contained by pads, whether the incontinence is painful (spasms can be very painful. Especially if the sphincter clamp shut at the same time), whether I am likely to experience retention again, and how likely it is I will experience any improvement. Recently when I had a catheter blockage my bladder emptied around th room catheter whilst tilt was in place, but would not empty when the catheter was taken out despite spasms, so i expect the retention is still there. Honestly I will most likely as for a suprapubic catheter as soon as I am well enough. This is where the catheter passes in the lower abdomen (pubic area) rather than going through the urethra. This will have the benefit of not being anywhere near my bladder neck which means it won’t be able to spasm around the catheter and block it. It also means that there is somewhere else for urine to come out of if there is a blockage (if retention is not too bad) though sadly this also means a chance of not being totally continent. This is something I can live with as it would be more comfortable.
This post was mostly written a few months ago and I am finally finishing it just now. Thankfully I have now been referred for a sleep systems assessment. I am nervous as it is from a physiotherapist and there is no guarantee they won’t want to do other assessments or insist on physio, but it would be amazing if I can find ways of reducing contracture, and maybe pain and spasticity by being adequately supported at night. Please keep your fingers crossed!