Up at 9, in bed by 8, yet still no time?
Health and personal care for MS and its comorbidities leaves little free time
My sleep schedule, according to mathematics, leaves me 11 hours — so what’s my problem?
My current ultra-efficient carers arrive at 9:30 a.m. and usually get me into the wet room 15 minutes later. Maybe 20 if my bottom has been misbehaving. It’s been something of a miscreant ever since I left the hospital in January.
But alas, I must refrain from writing about that area. In one of her dry asides, my wife, Saint Jane, inquired if I’d spent yesterday “writing about my bottom again.”
Drat! She’s been reading my column. And alas, I’d been driveling on about exactly that! I think I also might’ve been recycling jokes as well. Which fits our modern paradigm, hey? Except I’ve probably used that one, too. Oops, I’ve got myself trapped in a joke time loop! (I’ve used that one already, too.) I must stop watching the new “Loki” time guardians series on Disney+.
So I spiked a day’s self-indulgent writing. The main editor in my life has me down as pat as a lump of butter. Even though, as vegans, this would now have to consist of a plant-based spread, the present posh way of expressing margarine and, therefore, no longer the cheap alternative. Double drat.
Anyway, because of said area and the anal catheter I now have to use, the carers don’t come back till noon. I normally claw back some time by having coffee and brekky served in the sink circa 11:30 a.m. Which is very kind of Saint Jane.
Then I’m dressed and sapping time and energy applying lymphedema wraps carefully. Yes, lymphedema is another of the myriad comorbidities that multiple sclerosis (MS) has thrown at me. I know MS affects all of us differently. Mine is bad enough on its own without all of its glorious top-ups.
Dinner is usually around 6:30 p.m., as the carers come a-calling at 7:50 p.m. I also have to fit in cleaning the ol’ toothy-pegs, which, as usual for me, also requires certain special treatment. For a change, this has nothing to do with MS, but rather at nearly 66, they’re high maintenance. The only thing I’ve had to give up is the electric toothbrush, as I’ve learned the hard way that it sometimes ignites my trigeminal neuralgia comorbidity into hyperspace.
That leaves me with six hours a day, if I’m lucky, to write such things as this column. I also must deal with the endless bureaucracy that anyone with a complex illness has to manage. And that’s not mentioning all of the household stuff that’s required, although Saint Jane handles most of that these days.
That which was normally shared has shifted from my wonky grasp. No washing, cooking, or barbecuing for me. There is the occasional swimming, but that requires all hands on deck. (It’s a pity — because of the imposed purdah, I’m not allowed to refer to this as the poop deck!)
Those six hours also include the afternoon wee, which because of having to use an intermittent catheter can take as long as half an hour.
Oh, yes, I forgot about the afternoon drugs, plus checking to see if we need to order more. Also, I might as well swallow all the varied supplements that we MS lot have been recommended: vitamin D3, omega-3 oil, and as a vegan, a backup of vitamin B12 complex.
That leaves five hours a day then. If I take the weekend off, that’s 25 hours a week of available time. So what am I bellyaching about?
Well, this column takes me two and a half days to write. I’m in my MS dotage, me hearties. That leaves 10 hours for me. But this is invariably filled with innumerable hospital attendances, usually because of those comorbidities.
Or an entire afternoon might be spent at the specialist MS gym about 5 miles away. I’m incredibly lucky to have access to such a facility. They’re so rare as to be practically nonexistent.
I haven’t organized such a visit since returning from my four-month sojourn in the hospital and then rehab, because Saint Jane, who has to take me these days, is currently bogged down by a plethora of legal bureaucracy. The latest is incredibly bizarre. Luckily, at the end of an endless government form, my disabled card turned out to be holding four aces, which saved us 275 pounds ($342) and a lot of anguish. Hopefully.
That’s why I have no time.
Now I will never write the great novel. Well, I also never had the ability to do so. I doubt I’ll even have the time to jot down the comedic metaphysical novel that’s been stewing away in my mind for ages.
That’s my two and a half days done, you lot.
Over.
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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Comments
Lorraine Alexander
Several months ago I wrote a positive take on living with MS, which was never published for some reason. Too positive? John's situation challenges my positivity efforts, except to say what anyone would: his humor is beyond admirable. I so sympathize and empathize, though that may not be much help, and I am sure he has heard that many times. I have secondary MS and a few other conditions that I wouldn't call comorbidities (given the Latin root, though it's the word that's commonly used) as none of them alone ought to kill me. Take incontinence, which I share as a maddening side issue to some extent. I have taken a break from my urologist of 15 years, as all he does is repeat tests, try new and disappointing approaches (like Medtronic's Interstim, which I still recharge but find ineffective, and several Botox injection procedures in the bladder). Neither is proven to help people with neurogenic incontinence. How boring and deflting to be re-cycled through equally ineffective drugs. Medicare has decided to include acupuncture as a covered service, but then one has to find one who takes insurance! (I live in the US; is John in the UK?) As John and so many others know, the runaround itself can feel like a comorbidity. I am glad John has in-home help on and off. But what a mashup MS can be. I wish the NMSS here would really break new ground, fund an "original" clinical trial, the kind John mentions and Big Pharma has no interest in since it wouldn't bring it big $$$: a large nutrition trial, one the the FDA would have to be flexible enough to create modified rules for, since it might be impossible to make such a study double-blind, for example. Go ahead and do something we need and drug companies will never support! Do all of us a real service, and get real! Terri Wahl never got proper funding for her approach, so we don't really have the data I would want before consuming a mountain of kale each morning. Her story is impressive as far as I know, but we need the NMSS to get serious with Wahl and/or others seeking possible nutritional answers, which would be much more accessible to people than expensive drugs enriching CEOs. In the meantime, keep on keeping on, dear John. I am assuming that physical exercise is no longer possible for you. (Luckily for me, though I can barely walk I can do restorative yoga, Feldenkrais, Pilates, and Gyrotonic, the first two free online the last two expensive but not bankrupting.) And I do hope you get some relief by watching as much new, worthy standup comedy as you can find. Laughing remains, so far, the best cure, which is both the good and bad news.
Wendy Roe Hovey
You honor us by bringing along on this terrible, hilarious journey. Thank you.