One of the conditions of being released from the hospital a couple of weeks ago was that I had carers come to my home four times a day for six weeks. I realized it was for the best of intentions, but it still felt, albeit deep down, that these were my conditions for parole!
They also tried to send me home with an indwelling urinary catheter that had been fitted at the beginning of my incarceration. I was too out of it to even notice, and when I did, I accepted that it was actually easier when lying prone in a hospital bed. Then, just at the moment of release, I realized that the hospital had meant to send me home with it.
I put my foot down, figuratively. I say figuratively, as I’d need help from the occupational therapist to do that. However, I needed no help to lie down. I’ve put the work in. And put forward the notion that I was quite prepared to do a lie-down strike until it was removed. Stating that was big in the ’60s, why not now?
I also am aware of the need to free up hospital beds and was pretty sure I was well within my medical rights to go home anyway. Also, I had been intermittently catheterizing for some nine years and knew more than enough about urine retention, which was at the core of their argument! A few years earlier, a urologist with a camera in my bladder had even complimented me on my catheter technique.
Considering I was still really weak and managed to put up a fight and win was impressive. It also turned out to be imperative. The district nurse, who I was promised would remove it the next day (Thursday) didn’t arrive until Sunday. She told me she might not even have had the medical training to do it. Hospitals are always doing that it seems.
I was relieved that I could go back immediately to relieving myself.
The constant carers, though, proved invaluable for the first fortnight. I was so weak and terribly, terribly tired. It was also very handy when the antibiotic I’d been on for weeks to deal with the cellulitis that had put me in the hospital suddenly gave me vicious diarrhea. I needed pad changes every time my carers showed up for their four daily visits.
Handily, I had booked a call with my doctor’s practice about something else, and brought up the antibiotic problem. I also feared getting the dreaded C-diff again. My doctors have gotten used to my wife’s and my accuracy in self-diagnosis! She immediately changed my drugs, my wife kindly went to pick them up, and presto, the infernal big D dried up.
Now to the heart of this column. I’ve wandered around it a bit, as is my way. But every tale needs a backstory.
Though the first two weeks of carers did indeed prove deeply necessary, the next four are proving maddening. Not because of my actual carers — they are all absolutely lovely. I think I’ve still got two weeks to go. Every time I get stuck into something like this, I see their cheery souls coming up my front path. They could arrive in the next 21 minutes. They, and I, have no exact idea.
Familiarity is causing me to excessively tease them. Naughty me!
It’s the constant interruption that’s pushing me to breaking point.
The upside is that I’ve turned two of their visits into improvised gym sessions. Using my trusty Molift raiser, I’m now pulling myself up onto it from my wheelchair, then doing sit-to-stands. That is touching my bottom on the wheelchair, then pulling myself up again. My current record is 20 in one non-sitting!
It also revealed a fault in my wheelchair’s internal brake lock. The chair started moving by a couple of inches. The wheelchair engineer just turned up and fixed it by reprogramming the thing. Sorry, that’s beyond my ken. He said it was dangerous. Personally, I wondered if I was getting a touch paranoid. Seems not.
Oh, the carers are here again. I’ll scream if I see them whistling up the path! Too Disney.
OK, they’ve gone.
What’s really, really driving me toward the edge is being put to bed at 8:30 p.m., or occasionally, at 9 p.m. on a lucky, lucky night.
I think that was my bedtime toward the end of my junior schooling.
I’m a 63-year-old man now trapped in a 10-year-old’s body.
If only I didn’t have MS, I’d be top of the class in everything! Well, everything except math.
And I’d never need to put a bet on England winning the World Cup. That’s “soccer,” y’all.
They never make that sort of body-swap into a Hollywood film.
Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to multiple sclerosis.
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