Last reply 4 months ago
MSers

Hello! I was diagnosed in 2015, although the first onset was in 2013. Still trying to wrap my head around it all after 5 years! Havent had a full blown relapse since April 16 but have the odd numbness etc. How do you finally come to terms with having this illness and not constantly worry about what the future will hold??

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peterfrancis
4 months ago

Hi Melissa

I was diagnosed with SPMS last Oct/Nov, still trying to get my head around it now.

I have just learnt to accept it all…. It’s not going to be cured or get better anytime soon, I will possibly end up in a wheelchair full time etc, etc, etc.

The only thing I’ll say about accepting it is…. you just have to accept it, sounds simple I know but really that’s all there is to it, along with having the freedom to bitch and moan and whinge as much as you like.


vixen
4 months ago

Hello @melissa27. It’s so tough, I know. Fear of the future is so unsettling but I guess for me, having MS has really strengthened my ability to focus on now, today. I don’t know what is around the corner, but I don’t want to ruin it by wasting time being moody and grumpy today, does that make sense? The older you get, more and more people – whatever your age – have health concerns. It’s a fact of life. But I want my own life to focus on quality and making choices that enable that. Let’s not forget, that huge leaps in treatment and research are being made all the time so longer term, there is more hope on the horizon. So, the tough-love side of me says this: suck it up, get on with it! The more compassionate side says: life is for living, whatever that looks like. Make good choices, accept help and support, keep your mind active as much as possible, and treat yourself often. Life will run itself, stressing about it will only serve in making it worse along the way. Take care, sending you hugs x


stumbler
4 months ago

@melissa27 , the way to come to terms with MS is to feel comfortable with your management of the condition. Now, this should be a team game with your Neuro, your MS Nurse and other NHS services. You need to be happy that everyone is pulling together for your best interests.

The reason I mention this point is that you’re presently on Avonex, one of the original first line medications. The latest thoughts on MS medications is to treat the MS fast, with the best, strongest medications rather than waiting for you to acquire further damage.

Now, you were diagnosed in 2015 and had a serious relapse in 2016, so when was the Avonex prescribed? Notwithstanding your answer, I feel that you should be asking for a review, so that you are happy that you, and your team, are doing their best for you.


potter
4 months ago

I think Vixen said it all, my husband and I were concerned that we wouldn’t have and good retirement years. But here we are getting ready to retire and travel. We have friends the same age whose health has rapidly gone down hill. My husband realized that we are no different than anyone else. Illness happens to everyone and you just have to deal with it. Stress is very bad for MS, so stressing about it can make you worse. Potter


melissa27
4 months ago

Thank you all for your replies, had many of moments of acceptance of the last few years then feeling rubbish about it all over again. I’m sure I’ll get there, your all right I do just have to live in the moment.

The reason I’m on Avonex is because its the first one I’ve not been allergic too. I’ve had Tysabri, Tecfidera & Copaxone. All of which I had anaphylaxis & been hospitalised with. I have had more issues with the drugs than with the MS.


stumbler
4 months ago

@melissa27 , it’s OK to feel rubbish about it from time to time, we’re not robots! We all have bad days where it all becomes too huge again. But, then we regain our perspective and move on.

Now, reacting adversely to Disease Modifying Therapies (DMTs) must be frustrating for you. But have other, more effective treatments, e.g. Lemtrada, Cladribine (Mavenclad), etc., been ruled out for you?


kathboo
4 months ago

Hi @melissa27. Dont worry you’re not alone. I was diagnosed in 2012 (officially) when i was 32. Its taken me until now to get my head round it. I really struggle to walk and cant use my left arm/hand. My worry was not so muchabout the future but more about present and what people were thinking. I know that shouldnt matter but its easier said than done to not worry what you look like, especially when youre pretty young. Youneed to concentrate on what you can do, what you want to do and the best way of doing it. Stay as healthy and positive as possible and your future will be good whatever happens. If you’re happy and positive inside you wont be defeated by what your body decides to do. Sorry if that doesnt make sense but i know what i mean 😃. That was like a therapy to myself!


melissa27
4 months ago

At the moment my MS is stable, while navigating through the medication options over the past 4 years I’ve had another child, I was diagnosed when my eldest was 10 months old and he will be 4 next month. So whilst I’ve been having children my options have been limited and then limited even more by the hypersensitivity. My latest MRI showed only one my lesion in 2 years and no areas were active. So its a case of weighing up the risks to the benefits specially whilst my children are so young


slou2
4 months ago

Hi there,

Vixen pretty much has it right in my opinion. I was diagnose whilst pregnant with my 1st child. I had my 2nd 19 months later. They are now 18 and 19! I only started meds (Plegridy) about 10 months ago. Meds were not really easy to get in my early stages. I always ate okay (not fanatically good, I love chocolate and sugar too much for that) and walked most days. I have been lucky. Though I can’t walk far now and fatigue and memory problems are an issue, I vowed at diagnosis not to worry about the future. It’s coming anyway and worry just spoils the great days before anything less good arrives. Focus on what you CAN do and your amazing family. They will be adults in no time and, if like mine, making fun of you for forgetting stuff. Do everything you can and do not stress about what you can’t. Be kind to yourself and you will be fine!


miapi
4 months ago

@melissa27

It’s almost a year since I got diagnosed and I can’t say I m too far down the acceptance road.

And, you know what? I don’t feel bad about it at all.
I know that society probably ‘expects otherwise’, but it’s my own life and psyche, and if I want to be honest to myself, no I haven’t really wrapped my head around this yet.

I find that sometimes it’s ok to not be positive. Positivity for the sake of positivity doesn’t help me. What helps me personally is the following thought:

‘I am going to do whatever it takes to give myself the best chances’

This thought sort of reassures me that whatever bad happens (knock on wood), at least I couldn’t have prevented, because I did my best.

We have new drugs coming out, and that means that we have more control. That’s how I want to see it. Worrying about the future is inevitable, but my advice -if I can give any is: make sure you are being really kind to yourself in the present. Not ‘because you don’t know what tomorrow may bring’ etc etc, but because it’s just one of the most important things to do! Making yourself and your day-to-day enjoyment (whatever that means) a priority is, what I find to be one of the things that help.

xx

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