Its odd but I find I can cope with my MS, its other people who seem to struggle with it. My idea really is to just live a normal a life as possible. I don’t want visitors to come and see me and pity me, or keep asking me “how do you feel”? or well you “Look good”!
It depresses the hell out of me. Also if I do say well i am really tired today the stock answer back is “oh yes” I get fatigue too, it comes with age, or my memory is crap you guessed it the same answer back yeh it comes with age, blah blah blah.
Do you eat well? Try supplements, meditation, go gluten free and dairy free, watch your diet, oh and don’t forget EXERCISE. we are BOMBARDED with ideas on how to make our journey with this illness easier or even grant us a miracle and cure us, just by buying a book that tells us so. I have bought the books and they all contradict each other. One says eat lagumes the other one says dont eat lagumes. Its never ending.
You should try this diet or that diet, everyone is an expert on how to cope with MS. What people seem to misunderstand is a simple concept. There are FOUR types of MS.
Clinically Isolated Syndrome (CIS)
Relapsing-remitting MS (RRMS)
Secondary progressive MS (SPMS)
Primary progressive MS (PPMS)
Other, unusual types of MS have been described; these include Devic’s disease, Balo concentric sclerosis, Schilder’s diffuse sclerosis, and Marburg multiple sclerosis. There is debate on whether they are MS variants or different diseases. Multiple sclerosis behaves differently in children, taking more time to reach the progressive stage. Nevertheless, they still reach it at a lower average age than adults usually do
Each MS is dealt with differently. RRMS you can start disease modifying drugs, and have a chance of much less impact on your life if the drugs work for you and you can go into remission for weeks, months and years with very little symptoms.
With PPMS you get this at an older age as a rule. As we know as we get older things wear out so sometimes you never know whether it is your MS or just your old joints giving you gip or your eyesight or your bladder.
There are no DRUGS for PPMS. No books to read on how to cope with it. Most famous actors with MS who go around showing how well they are coping with their MS have in actual fact got RRMS.
The books written which are famous for making some of us feel like crap are:
Terry Wahls Protocol (written for RRMS).
Over coming MS. (Written by George Jeinek another sufferer of RRMS)
The Swank diet.
“Ashton Embry’s Best Bet Diet”
OMG really all these people have their own ideas on how to cope with MS. Its so confusing its enough to put anyone in a relapse trying to make sense of it all. Believe me i have read some of them, well skipped through.
I actually try and eat very well and i don’t over eat either.
My way of coping is this.
I think part of a healing process no matter what it is, is ACCEPTANCE. I often liken to having a diagnosis of a disease like MS is we have to go through the grieving process.
I honestly believe we have to accept our illness in order to help us deal with it and yes maybe in some way heal ourselves or help us cope with it better. If it means telling your auto immune to go and do one then so be it. You have accepted the fact that it is this which is controlling your life right now, and your not about to let it rule what you can do.
I suppose what I do is if i get a new symptom is i just accept it. I will say ah so that’s your game is it, today you are giving me an overacted bladder ok well i can deal with that. Not too much of a problem, and i will just pee when i need too and rest a bit more as I know sometimes i get it because i have over done it OR even worn warmer trousers I know silly but it is how i deal with it.
Or a new sensation will come along and i will accept it and say ok so thats your game today, you want to give me this that’s fine i can deal with that one, and i will just ignore it, not make a FUSS about it, and carry on doing things I enjoy like my garden hobby or taking my dog out.
I take only one 2mg diazepam at night for my MS. This is for muscle spasms perhaps which have occurred from poor posture. It just helps me to settle down if i wake up. During the day i take nothing. It doesn’t matter how much i am in pain, i accept that the pain is there and I move on. What can I do about it? Its not REAL is it. I say to myself I am not ILL I am NEUROLOGICALLY CHALLENGED. I do listen to a lot of music which i find very calming.
The myelin sheath is damaged which confuses the brain signals. These can be worsened through outside influences like heat for example.
When we are hot the spinal cord constricts, when we are cold it expands, so more signals can get through. So i avoid the heat as much as I can.
Inflammation can be stirred up by certain foods, so knowing which ones can do this its best to AVOID them. Which i do. For example gluten is a real trigger for me for more inflammation response like burning legs. Like yesterday i just couldn’t resist some pasta and now my legs are really going for it, burning like mad but well it will settle down it always does.
STRESS is the worse thing for MS, so folks no stress please. I just cant deal with it, so everything in my life has to be pretty well organised.
Its LEARNING to live with what is going on and not to poke the bear. I know going out will make me fatigued, fatigue can be dangerous as I loose my balance more and more likely to fall so i do restrict how I go out.
I have accepted my MS its part of who i am. So i live with it i don’t fight against it. I have a decent enough life I suppose. I try my best to keep on my legs as i know to stop using them we loose them very quickly. I am happy with what I have.
A lot of pain we have in MS in down to musculoskeletal pain, so its important to try as hard as we can to keep those muscles strong to support us. I do have a scooter and I take my dog out everyday so she and I can have fresh air. It makes me good to feel the fresh air on my face. We use a wheelchair when i am shopping as to try and walk is just PUSHING THE BEAR to much. I have ACCEPTED that I cant do it so why push it.
Diet is defiantly a good way to start I think. I don’t think anyone with MS should smoke or drink to be honest as the smoking is bad enough but drinking alters the brain to some extent and its confused enough as it is and we are more prone to accidents or falls if our brain is so confused it doesn’t understand how to keep us safe.
So yes I do say “oh for gods sake go do one”! I cant be bothered with this rubbish (I use a stronger word here lol) right now. And after a while of switching it off in my mind i forget its there.
Like i said i take no drugs during the day. When the pain of wrong turn signals gets too bad I have a bit of therapy in the form of shopping lol. I have way too many things in my little flat lol. But it does work.
I also write a blog which helps me to concentrate on something else then what is going on with my body and I watch lots of things on amazon or netflix.
I know i have been told i have a progressive disease, i have to learn to live with it, no point in crying over it, there are worse things out there to cope with and people far worse then I am. I think as humans we are challenged and its whether or not we ACCEPT that challenge or deny it that is the key.
All I need it my life is less stress, I have a loving family and friends, and when people do come and visit me, I just want to talk about NORMAL things, i dont want to be reminded constantly all the time, that i have a progressive disease, it depresses the hell out of me.
It all helps make this journey a lot easier to cope with if you just see me for who I am and if you really know me you will realise I am not about to let some disease invade my body and tell me what to do with my life, STRONGER MEN HAVE TRIED and not succeeded.
Something which is known just by capital letters is hardly ever going to be a challenge for me as i can change them. MS can stand for anything if you have imagination I call it (Monster Sucker). It doesn’t have to stand for The End of your life, just the start of a different life with new challenges.
I just wanted to share with you how I cope with my progressive disease everyone is different and has their own ideas but its my personal journey and so far it works for me.