Last reply 4 months ago
Newbie

Hi MSers,
My name is Matt, I’m 38 former chef, on a break at the moment (6 months) I have PPMS. Treatment: vitamin D3 and cbd oil 1200mg 36mg per day and attempting intermitting fasting, 1 week in. Hungry😳
Really looking for advice on staying positive as I am struggling badly after losing the love of my life, career and my dog. All the usual symptoms vision and hearing ok at present 🤞🏻But fatigue, depression and anxiety are massive factors.
Looking forward to hearing some of your stories….

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vivien
4 months ago

Hi and welcome, @matthew_allen,

Sorry to hear about your troubles, but remember, when you’re down, the only way to go is up!

I too was a professional chef, but I had 1 too many accidents and retrained in bookkeeping 14 years ago and now work as a payroll administrator, 4 days a week.

I’m RRMS, diagnosed Déc 2017 and it’s an uphill learning curve, after being constantly under pressure to deliver food on time, up to standard, art on a plate and then payroll deadlines for people to be paid correctly and on time, to kick down 2 or 3 gears to reduce stress and lessen it’s impact on my MS!

I take great solace from reading all the posts on shift and also Slack through the Living Well with MS programme from the MS Society and keeping in touch with people who are in the same boat, as it keeps me from feeling isolated.

Chin up!

Vivien xxxx 🤗


matthew_allen
4 months ago

Thanks Vivien,
New docs on Friday to try and kick start something, proper support and advice and some form of benefit would be nice. My neurologist I’ve seen for 4 years hasn’t even given me a leaflet to explain what’s happening to me, had to google everything, pretty scary stuff, damaging way to learn. And you are right, the only way is up from here! #zeronegativity


jreberg74gmail
4 months ago

Hi @mattew_allen, I was diagnosed in 2007. I had no idea what was going on or what ms ment. This site is great for learning. Good luck and stay stong!


stumbler
4 months ago

Hi @matthew_allen and welcome.

Yes, as you’ve realised, having MS and being a chef aren’t really compatible, which is a bugger after all the investment in training. But, life’s like that, unfortunately.

We have to stay positive, to keep our brains on side. Anything else releases chemicals, which don’t do us any favours. Although, I can see that being positive may need some work after your triple whammy.

But, we have to move on. The past has been consigned to history and we have to deal with the present.

Don’t feel embarrassed to reach out for help. You should have an MS Nurse, who is your key to all manner of support services. Maybe a Neuro-psychologist would help you re-focus.

The Citizens Advice Bureau (CAB) is also a useful place for advice.

I believe you may be in or around Brighton. You may want to pop across to the Sussex MS Centre in Southwick (http://www.mssussex.com/) and see what therapies and assistance they can offer.


edmontonalberta
4 months ago

@matthew_allen

Unless your photo is altered, why are you “attempting intermitting fasting”?

This might be relevant but I lost the love of my life25 years ago – serious, serious depression needed to be overcome. But I did that; it took years – all on my own since my wife had been a Psychologist; when listening to her stories I knew I would never let a Psychologist near my emotions… Her I would; but nobody else in that field… 😉

Fatigue? Can’t help yet you need to trust your body. If it says time to rest – then rest… Depression – makes sense to me; you need to find something to take your mind off that. What I do is volunteer – used to play Slo-Pitch 4 nights a week after my wife died; now with MS, I Coach & Manage. Being outside in the summer on the Slo-Pitch diamonds calms me down. Since everyone is different, you need to find your escape from day-to-day challenges.

Hope this helps a wee bit…


msorb
4 months ago

@matthew_allen.
hey i got the PPMS too! i knew about it from my mother who had it also. i did read the MS Trust booklet on PPMS when i was first diagnosed. i have to say its not a pleasant read. perhaps you can’t polish a turd after all!! haha.

When i was diagnosed i went off the rails and yes it has spun my life upside down and inside out etc. i think diet is a great thing to do. i have not done the fasting, but I bet its a buzz. all the diets i have done have been dairy free, i am cheese free! and i am convinced milk is no good, especially the way it is added to everything. the only diet science i have seen is about how the immune system is programmed by the fats you eat…sorry i cant site the study. so i have done diets that have been focused on how your body uses fat.

i take whole load of supplements and stuff: for fatigue i take Carbon60 in olive oil and i have to say it really works for me. i have not had much recently and the fatigue is creeping back- sleeping on the tubes and buses etc. it is not cheap there was a time i made my own, it is safe no side effects and no fatigue!!

for the dull tingling i take LDN low dose naltrexone. no dull disconcerting tingling anymore!

i take vitamin b7 biotin in pure form as the current trial is administering it- 300mg a day.

and vitamin D, 5-10 000IU a day and i use CBD/THC drops which are the ones that relieve tight muscle aches.

I think PPMS is a nightmare and going super healthy is the way forward. hopefully Ocrelizumab will be given the all clear next time round and we can continue to stave off the progression.


vixen
4 months ago

Hello @matthew_allen, glad you found Shift. I was diagnosed 2 years ago with RRMS and my younger sister with PPMS. I am still working, but struggling with that. I am on a high fat, low carb diet and find that really helps keep my energy levels up. Depression and anxiety are only to be predicted with our condition, but there are things that can alleviate that so either see your neuro or GP. There are so many people on here from all walks of life. The search box is a really useful tool, especially if investigating medications or symptoms. Nice to meet you 🙂

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