@DominicS 

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DominicS

Daily routine - 25+ years on

Good morning. Happy Monday! As I lay awake at 0310 this morning, when the ambulance crew who arrived to scoop up some unfortunate soul in the flats where I live thumped and banged about, I was reflecting on how my routine has changed over the years. What I take and what I do. For me, it has become more regimented in a continuing effort to try and beat the beast. I am on Ocrelizumab (Ocrevus) I take 1200mg (2 x 600mg morning and evening) of Alpha Lipoic Acid. Variously known as ALA or Lipoic Acid. Every morning a 200mg Modadinil Every other morning a 10000iu Vit D tablet. The aim is to keep a running 5000iu in my body. It remains in the system long enough to make this the best way of keeping the level. I get this on prescription to assure the quality levels. I follow a largely ketogenic diet with a drastic reduction in carbs. Personally, this has really helped my fatigue. I restrict my eating to an 8h window. Usually noon to eight o clock. I intend to start intermittent fasting. Every morning I have a cup of what is called Bulletproof coffee. It sounds disgusting but tastes just like coffee with cream. It is strong black coffee, 30g unsalted butter (this is the energy source and about what you'd put on a couple of pieces of toast) plus a tablespoon of MCT oil, all blended until it emulsifies. It staves off any food cravings really well. I do fairly random stretches during the day. My wife uses a massage rolling stick device on my calves and hamstrings every few days. Bloody painful to start but makes a huge difference to the release in the muscles as they seem to gently knot and tighten in the days preceding. Fatigue forced me to stop my regular cycling a few years ago. I was doing over 1000km a month. I weigh about 6kg more now. For exercise, I do about a mile a day walking, but want to do more. Am trying to mend an arm injury so I can get back on the erg. The evening is the second 600mg of the ALA and a 30mg Duloxetine. The ALA is bought over the counter (OTC) via Amazon. It is about a tenner a month and really concerns me as the quality standard of otc supplements is notoriously variable. Best, where possible, to have it prescribed as the pharmacy supplied ones go through a very rigorous testing process. The ALA is because I know someone working on the trials in humans regarding the restorative-effects on myelin. I normally Pooh-Pooh such things but the source is v credible. I try to be asleep between 2200h and 2230h to start it all again at 0600h. So yes, a subtle but dramatic change to my life. Only when I write it down to share does it seem so large. If you are newly diagnosed then I get how much of a shock it is. I wish I'd got a grip on my routine much faster than I have. But, I can't change the past so I am always thinking about how to wangle my way onto HSCT as that is the only true reversal available to an MS sufferer.
@DominicS

@jamoranto - I am describing my ideal world! I stick to everything barring the exercise. When I get tied up at my desk then it is the first thing I let slip :(

@chezy17

To me, following a routine would mean that MS has taken over and that's not how I want to live my life. I take my vitamins, I exercise, I socialise and I pretty much live on a diet of coffee and the one thing I have changed is cutting out gluten but that's just because I don't absorb my vitamins properly. I run round after the munchkins and I live for the now, if I want a glass of wine or two or heck a bottle I'll have it! No point living in the what if and maybes, I push too hard sometimes but that is my way of dealing with it. I have my meltdowns and that's fine, I just rest up when I feel like that. What works for me, doesn't necessarily work for others, I saw a post on survivors guilt the other day. I don't feel guilt, I feel thankful that I can do the things I do. Guess we're all different.