How I Get Through My Days — More Importantly, Please Tell Me How You Get Through Yours

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by John Connor |

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Today’s youth have to accumulate a range of skills. Everything changes so fast. Parents often have no idea what career their kids even want to follow. Do you know what a UX designer is? Me, neither. This latest social change was revealed to me in a recent Guardian article, which explained that, “the role was to do with ‘behind the scenes’ online design.” Yer, that helps.

In a world of continually shifting uber sandstorms, even a job that I’d never understand could equally be superseded, buried by our self-induced dunes of change. It struck me that we multiple sclerosis (MS) lot are equally having to learn new skills (or in my case, dig out my old journo ones).

It depends how hard it hits you, and if you can get (afford) the disease-modifying therapy hematopoietic stem cell transplantation (HSCT) early enough. That aims to stop the damage MS causes by wiping out and then regrowing your immune system, using your stem cells. And if it works on you, hurrah, at least you’ll halt any further deterioration, and hopefully even recover a tad.

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For the rest of us, it’s constant adaptation. As we physically deteriorate, what do we hold on to, when even physically holding on to things becomes impossible? OK, that’s me, but all our MS experiences are so different. I remember the MS Society UK mantra for a while was “No Two the Same.” Which sums it up nicely.

If our minds remain active but our bodies don’t, what do we get up to when not dealing with our MS monster?

I was always a writer, so going back to journalism was like getting back on a very old, dusty, dry bike. It wasn’t planned. I’d written a comedic piece for my own gratification and only got around to sending it out when boredom forced me into it. It was during my walking — well, hobbling — phase. Dragging a nerve-failing-lymphedema-engorged-rhino-right-leg led to a severe muscular tearing in my left one. Standing induced screaming. Being stuck in the bedroom for a couple of months made me twiddle my thumbs on my laptop.

This led to my first column here five years ago. I was still maintaining my first love, producing “The Edge” at the Comedy Store in London, which, unsurprisingly, I found even more fulfilling. Mental sparring was the one area where I was still on level terms, despite stand-ups always thinking a producer’s jokes and ideas were terrible even when they worked.

So journalism I’ve fallen back into. Indeed, I’m fast approaching the length of time I first accumulated in it. Writing, however, I’ve been doing in one form or other since the age of 19. I don’t include academic essays; their flourishes of language are not worth the paper they’re written on. Ahem.

Instead, I’d have gone back to my first forlorn love of creative writing. Unpublished novel and all.

There are also the joys of long-form streaming television to now be enjoyed. Streaming music and audiobooks has also been finally accepted. Audible is a welcome addition, as often print is too small and the books themselves are too heavy to read in bed.

The pandemic has got me out of the habit of socializing. Trips to smart hotels have disappeared because of my need for a hoist. It now costs nearly as much to catch a taxi (and return) to a Michelin-starred London restaurant as it does to order superb vittles.

So what do you get up to? It was relatively OK for me as retirement was fast approaching anyway. But I know from my time as the co-moderator of our MS News Today Forums that many of you have had to stop work much earlier in life.

I picked up an ingrained habit from there — always ask a question. Thus:

We face enormous constraints. Have you discovered anything new, or old, that you now participate in? Please respond in the comments below.


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.

Comments

Ed avatar

Ed

MS takes so much away. I retired 8 years early (5 years ago). I try not to think too much about the future - it won’t be the future I was planning for / saved for. One of my kids graduates in July and the other next year. My walking has deteriorated over the last 3-4 years (now use a walking stick outside). I occupy my days by doing the same thing - walking the dog for 15 mins in the morning and going for a 30 min cycle ride late morning. I do lots of chores - gardening, decorating….. I’ve realised that quite a lot of my time is taken up with MS related appointments - I’m in a study so have monthly trips up to London, have to fill in a daily diary etc. I’ve got no thyroid (side effect of my earlier treatment) so last week went for the annual blood test (for the GP) and the same week I had to fill out a form to continue to get my thyroxine for free. These are annoying reminders that I have MS (in addition to the walking stick in the car and the knee support - my weaker right leg). My only get away from MS is when I sleep (I always get good sleeps) and when I meet a friend every month or so at a gastro pub in rural Kent. We chat in the car about non MS things and the four hours goes by without me thinking about MS. So I keep myself busy and do get out (but I don’t consider myself lucky that I get out into the woods / go for a pub lunch etc. - all my friends / neighbours do this without even thinking about it!).

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John Connor avatar

John Connor

Hi Ed
CYCLE! WOW! SHOW OFF. ETC.
U should be getting all drugs free on NHS - special form covers lot. SOZ if that's wot u mean. Can't call u a granny - or indeed, suck eggs, as pretty sure their pretty bad for us MS'rs.
I'm in Sutton, where's your gaff?
Cheers John
PS Pls join MS Forum, if not already a mamber.

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John Connor avatar

John Connor

PS Pls join MS Forum, if not already a member. https://multiplesclerosisnewstoday.com/forums/activity/

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John Connor avatar

John Connor

PS member. https://multiplesclerosisnewstoday.com/forums/activity/

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Robert Hilton avatar

Robert Hilton

First off I need to say how much I enjoy reading your column John.

I now know what it must have felt like for the early discoverers. Heading off into the unknown, are you prepared to be trapped in arctic ice? Who will come to save you? Everything a mystery.

My MS has appeared much later in life and attacked like a tribe of unknown existence. Hard, fast and unforgiving. In my search I have yet to find that return to past greatness. I am still stuck in my port of familiarity, the problem being that it is no longer familiar to me. I am searching for the courage present in those early explorers, to stick ones toe into that gigantic cold ocean.

I know there is many islands I can pull my ship into and set anchor but dealing with the old barnacles weighing me done seems to be the first step to reaching that new island.

Thank you for your great words of wisdom. Please don't stop, they help immensely.

cheers
Robert Hilton

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John Connor avatar

John Connor

Hi Robert,
First off - if u haven't already read Jack London, do so. U'r analogy an all. Short story to ease u in 'To Build a Fire'.
MS later in life is often uber aggressive. U can tell from my bwritingnit put me in wheelkchair within 3 years!
Cheers John
PS Pls join MS Forum, if not already a member. https://multiplesclerosisnewstoday.com/forums/activity/

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Christina Zamoyska avatar

Christina Zamoyska

Thoroughly enjoy your articles, John, and following how you cope with your increasing disability.I too am on that slippery slope to being wheelchair bound and had to retire just before the pandemic struck so forced into finding things to do.
The first new hobby was finding a few packets of seeds and throwing them in pots and to my amazement producing things to eat. I now have several veg beds, some on legs for easy access, and grow lots of things from seeds. I also enjoy watching the birds on feeders just outside my window but long for the days when I could walk through the woods and see them in the wild.
Onwards and upwards (big sigh)

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John Connor avatar

John Connor

Hi Christina,
We have a white squirrel that visits out garden. He's been teaching my wife to feed him nuts.
Cheers John
PS Pls join MS Forum, if not already a member. https://multiplesclerosisnewstoday.com/forums/activity/

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Ben Smoke avatar

Ben Smoke

I love reading your material. I'm approaching my 78th birthday with SPMS. My legs are very weak and I use a 3 wheel walker. I nap a lot. I have a great wife and good friends. What helps the most is 'here and now' thinking...very Zen. I stay out of the Sun in more ways than one. I also love modern poetry that is not all "me...me...me". My wife and self are learning French. A real challenge. Get involved with lost hobbies. Thanks so much.

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John Connor avatar

John Connor

Hi Ben,
French & modern poetry.
Zut alors!
Cheers John
PS Pls join MS Forum, if not already a member. https://multiplesclerosisnewstoday.com/forums/activity/

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Penny-Marie Wright avatar

Penny-Marie Wright

I'm in Calgary Alberta Canada & was doing more but have fallen off the walking again. Can't afford a dog right now as the apt. owners want to gouge as much money out of us as possible even in an accessible apt. I normally have both my tv & computer on(for emails mostly) but right now my tv died & haven't replaced it yet. Some of the tv shows I can watch on my computer. Do too much sitting, especially now. I have Multiple Sclerosis, Fibromyalgia & Osteoarthritis in my right hip & I think it's spreading. Zoom has been great as it's second best to seeing others in person, have met people all across the world with it. I try to attend 3 or 4 Zoom exercise groups/week depending on doctor app. I try to leave Thur. free of app. as everybody seems to like that day over any other. I've had MS since Jan. 2002 although wasn't diagnosed until Jan., 2003. Almost made it to 25 years at my last job. I am sorry to hear you are having a hard time with your MS. This is a b... of an illness, I keep hoping they come up with a cure for at least 1 of my incurable diseases. I hope you can keep this site going as long as you can as I have found a lot of information on it. Just went back this morning & reread the comments back to Jan. 2021 of people's thoughts of good days for them. Pictures of their dogs & of the birds are great, never heard of a murmeram? before. I hope everyone has a great day, take care.

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John Connor avatar

John Connor

Hi Penny-Marie,
Spent a few weeks in Calgary 40 odd years ago.
Re a dog. U can get them as MS support animals - https://multiplesclerosisnewstoday.com/news-posts/2020/02/11/support-animals-service-dogs-need-know-resources/. As such your landlords maty not be able to object to you having one.
Cheers John
PS Pls join MS Forum, if not already a member. https://multiplesclerosisnewstoday.com/forums/activity/

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Glenda Hendry avatar

Glenda Hendry

As my abilities dwindle, I find leaving home more difficult, more terrifying, and more rare. I fear humiliation from incontinence or any of a multitude of issues. I’ve never been agoraphobic, but it feels as if I were. As my world shrinks, my family (especially my husband) becomes more important. This is not a very good answer to your question, but it’s my reality.
If I were to give you a real answer, it would be learning about native plants and trees. I study them and purchase them and my patient husband plants them for me. I love learning about the host plants for different moths and butterflies and hopefully providing that food source for them, as well as food source plants for birds. I watch nature, mostly through the windows. It is so fulfilling.

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John Connor avatar

John Connor

Hi Glenda,
Our world does indeed shrink.
U undoubtedly know this - letting part of your garden grow wild really helps butterflies & bees. Also means less work for hubby.
Cheers John
PS Pls join MS Forum, if not already a member. https://multiplesclerosisnewstoday.com/forums/activity/

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Bill DeVore avatar

Bill DeVore

After living with the MonSter for 33 years I get through my days by figuring out how many ways I can tell MS to go f*ck itself. Pardon the French, but I’ve well earned the right to say it.

Yes, I did, HSCT (Russia), allogenic stem cells in Panama (SCI), autologous stem cells in Cancun (CellTex) and every other treatment purported to stop/slow the beast - Steroids, Mercury filings removed, Metal detox (DMSA), Acupuncture, Reflexology, Mold detox (Dr. Shoemaker, Maryland), CCSVI 3X (Dr Mandato, NY 06/2010, Dr McGucken, NC 03/2011 & Dr. Sclafani, NY 07/2016), LDN, Ampyra, HBOT (bought a chamber), Inclined bed therapy, CNS Neuro-feedback/Neuro-therapy, Antibiotics (Protomyxzoa Rheumatica), IR Sauna (bought a sauna), IV Mega Vit C, IV Minerals, Meyer's Cocktail IV, Blood UV Light thxerapy, Prokarin, Gluten free diet (15+ years), Dairy free diet, Fat free diet, Sugar free diet, Paleo diet, Physical Therapy, dVibration platform (bought a Hypervibe), Peptides - injectable BPC-157, TB500 & TA1, yFFP (young fresh frozen plasma), Ursolic Acid, High-dose Biotin, L-Dopa, Metformin, Rituximab infusions & most every vitamin and/or mineral supplement ever promoted to or expected to help MS!
All to no avail.

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John Connor avatar

John Connor

Hi Bill,
That's beyond a list.
As 'It's to no avail', maybe just do what you can for fun/fulfilment.
PS Pls join MS Forum, if not already a member. https://multiplesclerosisnewstoday.com/forums/activity/

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Jeremy Hodson avatar

Jeremy Hodson

I spend a lot of time playing snooker at my club
I can hang on to the table so only rarely fall!!

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John Connor avatar

John Connor

Hi Jeremy,
Hope the only balls u break r on the table!
Cheers John
PS Pls join MS Forum, if not already a member. https://multiplesclerosisnewstoday.com/forums/activity/

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Beverly Walker avatar

Beverly Walker

I was diagnosed with MS at 73. I am now 78. My husband passed away 2-1/2 years ago and my oldest son moved into my house to "take care of me." The only thing I cannot do is work in my flower beds, which leaves me very frustrated. I had my left hip replaced last November, thinking I would be walking again by Christmas, but here at May 31, I'm still having to use a walker. I think I can't walk due mostly to the MS. When I was diagnosed, I was told I was too old to for medicine or treatments. I have seen 3 different neurologists and no one seems to be able to help me. I can still drive my big car (a Lincoln Towncar) and I can get out and go places, but it's really no fun anymore. I take naps during the day and feel tired most of the time. I seem to have outlived most of my friends, but I still have my 2 Golden Retrievers to keep me occupied and company when I need to go pick up prescriptions and such. Did not plan to end up this way, but I'm still alive and active, so I guess I'll be alright for a while longer. I had 73 good years and I guess I can live through a few miserable ones!

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John Connor avatar

John Connor

Hi Beverley,
I'm presuming u're in the States. The point of Diserase Modifying Therapy [DMT] is to slow the onset of how u're MS develops. As such it would give u longer quality of life. U also get a hand adptiopn to drive u're car without u're legs.
Glad u get comfort from your dogs - as they're retrievers u can at least teach them to get things for u.
Cheers John
PS Pls join MS Forum, if not already a member. https://multiplesclerosisnewstoday.com/forums/activity/

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Graham Coles avatar

Graham Coles

I was diagnosed with MS in 2000 when I was living in Tokyo. I started my MS journey in Japan, but am now in my home town of Ottawa, Canada, married with two kids. Some how I ended up here. It’s bonkers. Ensconced in family life amid MS induced physical and mental deterioration. I can’t hold a pen so I can’t write. Since this society operates on signatures and ‘writing stuff down’ I find that I’m at a disadvantage. I am becoming reliant on computers and keyboards!

I spend much time watching and or listening to podcasts. Consuming information is more and more important as my physical being declines in power.

I’m slow and getting slower. Companies need ‘resources’ that are happy in a ‘fast paced environment’. Speaking of fast paced environments, my kids are ten and twelve. Bouncy is an understatement. As I slow down, they’re speeding up. “Stop complaining!” a voice in my head screams. But I don’t believe I’m complaining, just stating facts. Perhaps choosing which facts to articulate about my body’s decline is considered complaining? So, how best to state those facts so that my brain likes itself.
A challenge.

I enjoyed reading your article John! Thanks for encouraging us to tell you our stories.

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John Connor avatar

John Connor

Hi Graham,
U're mind seems fine mate.
Yes, I consume an inordinate number of podcasts. Football [the proper kind], Modern History & Comedy mainly.
Re writing, just had Botox injections in my right writing arm for its spacisity. Can suddenly manage signuture [of sorts] & can even read my scribble now. May even do a col about it soon!
Cheers John
PS Pls join MS Forum, if not already a member. https://multiplesclerosisnewstoday.com/forums/activity/

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Edith Denny avatar

Edith Denny

Hi there from Rhode Island USA, I was diagnosed at 71 and am now 73. After more than 35 years I finally got an answer to what was wrong with me RRMS which has turned into SPMS now. I think the best thing about this whole thing is that I now have an answer, I am not crazy and can tell my family that. Just before I was diagnosed, I discovered through listening to Echart Tolle living in the present is so much healthier and has serving me well since. My understanding of this disease and how to mitigate the symptoms has taken me 2 years (still learning). I have found aqua therapy as well as physical therapy is really helpful as well as respecting the onset of symptoms and how to address them. In our individual journeys we all do the best we can, and I do think it helps to hear from others in this community and how they are handling their reality.

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John Connor avatar

John Connor

Hi Edith,
Ridiculous it's taken so long to get a diagnosis.
Glad u find physical therapy helpful - all MS research supports this.
Cheers Johnj
PS Pls join MS Forum, if not already a member. https://multiplesclerosisnewstoday.com/forums/activity/

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