Hi all, I hope you all are well. I haven’t really been active on the forum for a while.
Today I found some time to log on and I thought I would post a message to you all.
So just a little a bit about me and my MS journey. I’m 32 years young and I am a cognitive behavioural psychotherapist.
I was diagnosed in 2019. I believe my first relapse was before my diagnosis in June 2018. 2019 I had two more relapses and since I’ve been ok. MRI shows that my MS is active and I’m currently waiting to start Tecfidera. Tried copaxone in the past which I hated and quit after 5 weeks of trying it.
So as you know, MS is our biggest enemy and we can go through ups and downs through our battle with MS. Living with MS brings a lot of uncertainty for lots of people. Worry about the future, worry about our wellbeing and health and the impact this will have on our life. Ruminating on what life was like in the past and comparing it to what it is right now for you.
I would often get reassurance from loved ones but this just offered me short term relief. So what got me through the dark times of my relapses was my closeness to religion and my reliance on God.
Going through a relapse is not a nice experience. Sometimes it can really get us down. What gets you through a difficult relapse?
Thanks in advance for reading my post and for any replies.
What has got me through in the past? The love and support of those around me primarily. And also hope: even daft against-bad-odds hope that all would be OK sort of. Plus, with experience, memory that relapses do normally get a bit better even if they do not heal entirely. And that has been the case with me so far - 20+ years.
Mostly just the belief that it’s all temporary and will get better, at least as “better” as MS ever does. I’m usually able to see the glass half full, so when I’m struggling I focus on how good I’ve had it and what I like about my life now.
Hi Lab
Like you, it’s reliance on God that’s core to how I live. Trusting that, no matter how hard things may be, He carries me, He knows everything I need and will help me to do whatever I need to do. He’s managed to bring good out of this whole thing, and that gives me a sure hope
Dan
Hmmm Sheer stubbornness, mostly… “I will NOT let this thing get the better of me!” I agree that coping with the uncertainty is a bummer… so I just try to take one day at a time, and not think too much about what might happen - odds are it probably won’t, and I’ll have wrecked my own wellbeing and half scared myself to death by fretting about it. On the mental side… I have no religious beliefs (but if other people do and find it helps, good on them…). Maya Angelou had it about right - “hope for the best and prepare for the worst”.
What gets me through?
From day one I’ve tried to ‘ignore’ and give zero credence to what is (or is not) happening and, after working out an alternative ‘way’ to do whatever I had wanted/needed to do, had just ‘got on with it’.
That way I can always tell myself, and my (MS) enemy, that I’d beaten the challenge, again… and it (my MS) hadn’t won, AGAIN.
Be well, Abbey xx
Denial doesn’t work either. Honesty is better, most of all with yourself…
…and your family and closest friends, You need them!
Tackling MS is counter-intuitive because we have to discard prior conditioning: it’s not like an injury or illness that you can recover from.
Acknowledge that one’s fight is a plateau or damage limitation, not repair
Set challenges that you CAN win. Accept reducing capability and resist it when you can. Don’t accept help if it’s something you can still do because next time a task needs doing, it may be beyond you.
Contrary to #4, work on the small wins: manage weight, exercise, strength & CV conditioning to keep your body in its optimum condition to fight the big one.
Positive mental attitude.
Interesting that the original post comes from a CBT. I guess you must be sick of “physician heal thyself” comments! Glad that you’ve joined a group like this: you aren’t afraid to seek help from others, whilst probably able to help others on the group too.
hello! I am waiting for an appointment with a neurologist but the symptoms I have and the ones I have make me think that maybe I have MS. besides all I googled for the medicines that are available (which just slow it down) but i noticed something else, herbal medicines. can you fight MS with herbal medicine ??
Well, I do think it would be a bit like trying to extinguish a fire by means of interpretive dance. And those things can be an expensive hobby. Lifestyle medicine - nutrition, sleep, exercise, stress management etc -are a very important part of living well with MS. But as far as meds go, it’s the conventional ones that give you the best chance with RRMS.
I think Alison said it very well. With experience, you can find things that make you feel better at times or help you deal with a specific symptom, but the Disease Modifying Therapies (DMT’s or DMD’s) that they’ve created over the last couple decades should usually be the base of your treatment. There is no food, diet, plant, exercise, or anything else that will fix MS. You can only work to find a combination of everything that works for you.
Hi Lab, doing what you do for a job is what we could all do with using!
It is a hard life, coping with a chronic case of MS. Nevertheless, it is still a life worth living.
We need great support from family, friends and sometimes carers.
In my own case, I was desperate and losing hope earlier this year, until I had a visit from Jesus…he helps me daily now.
Glad to hear your faith helps you too.
Take care.
love Boodsxx
My wife has a friend who’s into alternative therapies. She’s read a book written by am American woman with MS who was in a wheelchair and now she can walk again. According to my wife, $40 for the book could be money well spent. I said “who for, me or the author?” Apparently I’m being negative and narrow-minded for poo-pooing it. Hmm…
I’m really positive and think I’m dealing with the shit-sandwich that is MS pretty well, but not so positive that I can see through some questionable marketing. I’ll keep my faith in the £Bn’s bein thrown at MS by modern medicine a bit longer.
Ugh. I have an aunt who keeps insisting that her stepdaughter was cured of MS by taking up yoga. She got mad at me when I said the woman obviously never had MS in the first place.
Hi I dont think the diagnosis of MS was correct in the first place, if someone is suddenly able to walk. I have my faith but dont expect a miracle!
Boodsx
Just a thought here Lvc27, you’ve made an assumption that you have MS based on symptoms you have. Perhaps you’re counting chickens before their hatched (so to speak).
Until you’ve seen a neurologist, had a neurological exam, probably had tests (MRI at least?), you shouldn’t decide that you have MS. Obviously, there’s a big temptation to do just that when a wait for neuro appointment seems endless and there’s any number of websites available to give you a firm belief in the diagnosis. But don’t act on the belief that you have MS until the fat (or thin) neurologist has sung it to you.
Personally, I’m with Alison, and many other posters, fighting MS with anything less than NICE approved, properly trialed disease modifying drugs would be pointless (in my opinion). That includes herbal medicine and religion. Not that I want to rubbish anyones belief system, but faith healing for MS, just like herbal medicine doesn’t really have the evidence that DMTs have.
Hopefully you’ll get a neurologists appointment soon and can find out if you do in fact have MS. If so, why not ask the doctor whether herbal medicine would be as effective as anything they might be willing to prescribe?
