Hey there, I hope you’re all well and dealing with the heat as best as one can.
I’ve had an official diagnosis of relapse remitting ms, they’ve done a lumbar puncture 2 weeks ago (that was a barrel of fun lol) and now I wait for treatment etc. I know there are many of you out there with different symptoms of all ages, I simply just can’t mentalise how I am supposed to live with this condition? The coping with treatment, the unreliable experience with how the relapses might come and how it will change with time. How do you guys do it?!
Rachel x
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Hi Rachel. How did I deal with it? A massive question!
A diagnosis of MS was pretty earth shattering for me and i expect everyone else. It took me months and months to grieve for my lost identity and expected future . Over time however I did come to terms with my new reality. Allow yourself to grieve. I’m a great believer in ‘counselling’ and although I didn’t use counselling when diagnosed I have used a few sessions over the years since.
Also don’t hesitate to talk to your GP about antidepressants/ anti anxiety. Depression and anxiety is pretty common in those with MS - and no surprise in that. I’ve been using low dose Citalopram for years now . It’s worth reading up on MS and anxiety/ depression .
Hope this helps
Those early days really aren’t (as you say) a barrel of laughs, and I do not look back to my own version of it with any great pleasure.
The good news is that you don’t have to figure it all out and settle on a plan. Just getting through a day at a time and making the decisions that the day demands will do for now. Time does make it easier for most of us, but there’s no rushing it.
There isn’t a right way to deal with things - you’re dealing with them as best you can (as am I) and that’s good enough.
Hi Rachel,
Sorry. MS dx is sad news. For me personally, I just went into denial, 24 years ago. MSers deal with diagnosis quite differently.
I only accepted I had multiple sclerosis 9 years later, when I started on my first DMT, Avonex then Lemtrada and Kesimpta most recently.
Although the disability has progressed over the years somewhat, I think I’ve always tried to cope by living a healthy lifestyle and always thinking positively, as best I can.
Wishing you good luck, on this unpredictable rollercoaster ride, best regards,
JP
Hi Rachel,
I was diagnosed just over a year ago and I’m still trying to answer this question for myself. It’s just what I wanted to know, too…How on earth to live with all the uncertainty?
Let us know if you work that out.
I think there are a few things. One is to get reasonably informed about treatment. You want to be reading reliable information (eg MS Society website, MS Trust, US equivalent) and avoiding attempts to sell you a lifestyle/“cure”/miracle diet etc. If you can get some idea from reliable sources, you can then check your info with your neurologist. You may have some decisions to make about treatment and on that, I think it’s important to face up to the diagnosis and think long term.
MS is actually quite interesting. I’ve sometimes found learning about research makes me feel more positive.
Look out for any newly-diagnosed info days or support, including via the MS Society. These can be really helpful - it made me feel more in control.
Second point: Some things look scarier than they are. One of these can be side effects of treatment. I was quite scared about starting a “high efficacy” treatment with supposedly horrible side effects. But for me at least, the side effects have been near zero. So if it’s going to kick my MS into the long grass, I’m having it. Side effects are often listed as though they “will” happen to you. Often they are just a small risk they have to tell you about. After all, read the information leaflet on a pack of paracetamol - that looks quite scary too.
As for relapses, they vary so much from one person to the next. But the trials showed that people on high efficacy treatments tended, on average, to have very few relapses. Unfortunately, there can be progression of disability even without relapse…but that may be a more gradual, subtle thing.
As long as you face the truth enough to take sensible decisions on treatment, I think a bit of denial is not a bad thing. It may happen without you even trying. You still need to live your life and you can’t do that if you’re thinking MS all the time. So if symptoms allow, I’d say, keep busy living life to the full. Make an extra effort to do things you enjoy that might be harder in the future. Avoid idleness, rumination and doom-scrolling on devices… As for the future, research is ongoing, so don’t write it off yet.
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Hi Rachel
I will not pretend all is fine in this horrendous heat I have not had any problems before MS has paid me a visit and never left. I’ve nearly fainted on my early morning walk, increased fatigue and that the feeling I can’t even describe to I say I feel MS-sy, made me stay indoors. I even had to drop my daily physio because I got so hot so quickly.
Take your time to digest it all. It’s a lot to take in. My approach was as described by Hank_Dogs as grieving for the lost identity and what future might hold and ostrich head in the sand pose for over a year even though I have been rather unwell with MS symptoms, crying a lot, stressing about what and if which made me even more ill and anxious/depressed, reading about the worse what can happen to me as MS progresses. I do not believe there is a single person who is able to take such a diagnosis lightly.
I’m grateful that there is so many treatments available to what there was 20 years ago. Now it’s about finding which DMT will suite your needs, which side affects you can tolerate and which you just can’t.
There is lots of advice on how we can manage and as there is no cure, the management of the disease is just if not more important than the DMT itself as it’s not a treatment it’s part of the management.
I will not pretend that my life has not changed as it did and significantly. I have changed my diet; I do not eat food I used to love so much and treat myself only when visiting my mum or when on holiday.
Try to stay busy and occupy yourself as already suggested. My GP is very understanding end very supportive so is my MS nurse. If you do not have one, I’m sure you will be allocated to one shortly. In the meantime, speak to your GP about any worries you have.
I’ve found out that listening to relaxation/meditation music puts me in an ease even during my work as it plays in the background, and I feel calm.
Take one step at the time, there is lots of reading / information online how you can try to manage your symptoms / disease. We are all different with MS so even though it will be trial or error to find out what works for you, being patient and giving a time will help. It has taken me good 3 years to navigate this world and 2 years for the changes I have made in my life to show. It was all worse it, I am in better health then I’ve been before I adjusted my diet, taken up as much exercise as I can and having time out when my body asks for it.
I’m a great believer in writing a diary. I have written several by now. Sometimes I have daily entries, sometimes now and then, but I helps me offload my thoughts, scream and shout on the paper with all emotions, or just share the happy pleasant experience I have had on a day. It keeps me sleeping better without disturbance.
You will get hang of it little by little.
Wishing you very best
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