So for the last month, I’ve been in a rehab facility following a 10-day hospital stay. I have a couple of autoimmune disorders (scleroderma and polymyositis) that left me basically unable to function completely due to severe muscle weakness and fatigue. I was living alone a few weeks before the hospital stay, though with severe difficulty – I’d been falling apart for months – but eventually the situation became so severe that my mom took me in. It quickly became apparent I was going to be more than she could handle (I got weaker quickly over the week before Christmas and she was having difficulty doing enough to help me out of bed), so finally the doctor agreed to admit me to speed up the diagnostic process and because the situation became so acute.
Now I’m finally on immunosuppressants and I’m recovering, but very slowly. I need a lot of help to do normal activites.s With some aids I can finally use the bathroom by myself now, and I can stand with some difficulty from my wheelchair at least a few times, but I can’t get out of or into bed without help yet. I usually walk with a walker though we’re slowly transitioning from that at the moment. I’m making good progress but it’s slow in coming, so it looks like I might be another month (if insurance holds out!) before I’m able to leave.
I’m 33, so I’m very much a fish out of water here. The vast majority of the residents are elderly. Also, the other half of the facility is a regular nursing facility so we share a lot of the same staff (and food ). Some of the patients in rehab are headed there or to other facilities, some are going home, but I’m probably the youngest by at least 20 or 30 years. I don’t see a lot of the long term care folks, but I am free to go to their activities if I wish.
Anyone curious about what it’s really like to live in a nursing home – that’s basically what it is, just with 2 hours of therapy a day? Or curious what it’s like in therapy? Some typing is good therapy for me anyway, so I figured I’d toss it all out there.
I brought one, but there is a public computer available in the at least one of the common areas too. I haven’t really been down there since I don’t socialize much with the other patients. There is free wi-fi available throughout the facility.
These are new diagnoses. I was totally fine until I started having unexplained weakness, fatigue and swelling last year.
Well, personally I’m in no state to make any escapes. I can’t say the same for everyone- – a few weeks ago, I overheard one of the nurses telling a therapist that a patient had apparently taken off in a cab unexpectedly. They got the patient back somehow. A lot of the patients don’t really understand why they are here and can get pretty agitated. I don’t see a lot of them because they tend to refuse therapy if they are that way, and I only generally see other patients in the therapy rooms since I don’t go to the activities (I’m working remotely and most are during the business day). In any case, nobody’s under lock and key here, and it’s a ‘restraint free’ facility (we can’t even have rails on the bed if we want to).
Generally speaking, I can stop treatment anytime I wish, but I can’t just take off unannounced. As long as I’m here, someone needs to sign me out to leave as they’re taking responsibility for my safety. I’ve left a few times with family and once with a therapist (they took us out to a grocery store as a part of therapy).
Just had to drop in and wish you well . . . my mother experienced two severe bouts with Polymyositis when she was in her 70’s. She recovered from the most severe (5 months in hospital/rehab) very well, so take some heart in that!
Thanks for the well wishes! I think I’m progressing pretty well, actually. It’s hard for me to always tell because I deal with it every day, but I’m told I looked pretty horrible when I was in the hospital. Just today, one of the aides I haven’t worked with for about a week and a half was pretty impressed by my mobility improvements. I’m getting much more confident too, which helps, as my balance has improved in addition to my strength, so I can do more by myself.
My symptoms are all over the place – I’m affected with weakness primarily in my hips, shoulders, and neck, but I also have very tight joints at the knees, shoulders, and especially my hands, so a lot of the classic techniques don’t work because I have such disparate problems. The biggest problem is anything that involves lifting my legs more than the height of a stair. I can’t lift them with my arms either, because they’re too weak! But we’re working on it. I’d like to be able to get into bed by myself soonish.
That’s extremely kind of you! I think I am okay though. I’m actually working remotely from here, and I have plenty of entertainment (including coloring books!) for when I’m not. I find I need to sleep a lot and rest a lot to keep up with the demands of therapy, so TV has been my friend. I wish we had better channel selections though… no Comedy Central, no A&E, but we have Hallmark Channel and TV Land and Game Show Network… you get the idea.
I’m not sure I could handle TV without BBC America. In fact, I got rid of cable finally and just watch Netflix streaming and dvds these day.
I just spent several days in December sitting with my husband in the hospital and another week at home after his surgery. He couldn’t focus his eyes to read or watch TV so I ended up reading to him when he was awake so he wouldn’t go insane on the nurses out of boredom. It was rough but all worked out in the end.
If you get bored later on the offer still stands. I play a pretty good game of Scrabble. Keep getting better!
What happens to you if the insurance doesn’t hold out? In general, what happens to anyone whose insurance doesn’t hold out? Do you get set out by the curb on garbage collection day? Sent to the low-budget warehouse-style nursing home on the other side of town? What about patients, similarly situated, who don’t have any family to help out?
I don’t know about fluidruid’s situation, of course, but from what I understand, if you’re at the end of whatever time the insurance says it’ll pay, you have to physically leave the rehab for a few days so the insurance will kick back in. Some people go to the hospital, even if they don’t necessarily need hospitalizaton (this happened to my mother twice before she was eligible for Medicaid), while others are well enough to go home for a visit. How long that “break” is depends, I believe, on the insurance.
I just wanted to come in and wish you well, and a speedy recovery.
Spring of last year I found myself slowly recovering after a hospitalization, it was a slow but steady recovery ( from a severe concussion, effectively ), so I can understand your impatience. I was five long weeks recovering, and it felt like an eternity to me. The slightest improvement would raise my expectations to unreasonable heights, usually early in the day. Only to feel crushed when it would degrade as the day wore on. I was impossibly impatient.
I admire your spirit and your patience enormously, keep up the good work!
I do therapy and frequently work in nursing homes; I have often thought if I had to live in one the two things I would need most were internet access and someone to bring me fresh food. seems like facilities hardly ever serve salad or fresh fruit.
Fluiddruid, I wish you well with this. I have been there and done that - I had a viral demyelination at 30 about 12 years ago that left me right-side hemipaelgic. The rehab is tough, but I got back better than 95% with rehab. I was on a stroke floor and one of 3 “youngsters” out of a bunch of seniors.
As an aside, the worst meal I ever had in rehab was minced ham. My wife took one look at it and left to get me dinner at a local Chinese place!
). Some of the patients in rehab are headed there or to other facilities, some are going home, but I’m probably the youngest by at least 20 or 30 years. I don’t see a lot of the long term care folks, but I am free to go to their activities if I wish.
I can’t say the same for everyone- – a few weeks ago, I overheard one of the nurses telling a therapist that a patient had apparently taken off in a cab unexpectedly. They got the patient back somehow. A lot of the patients don’t really understand why they are here and can get pretty agitated. I don’t see a lot of them because they tend to refuse therapy if they are that way, and I only generally see other patients in the therapy rooms since I don’t go to the activities (I’m working remotely and most are during the business day). In any case, nobody’s under lock and key here, and it’s a ‘restraint free’ facility (we can’t even have rails on the bed if we want to).