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

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!).

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

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)

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.

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.

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.

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.

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

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!

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.

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.