Last reply 8 months ago
How do you cope day to day

Hey everyone I’ve not been diagnosed yet but I’m pretty certain I do have Ms.
I’m finding it incredibly hard n crushing n to be honest it’s a huge rollercoaster of emotions atm.
I’m a very strong person I’ve been through awful situations in my life but trying to deal with something that I feel will end up taking a big chunk of my life away I’m finding bloody hard any tips comfort ect you guys could offer

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stumbler
8 months ago

@vincentnancy88 , you need to sit down and breath, watch your favourite film and break out the wine and chocolate.

You need a neurologist to examine you, then arrange an MRI and possible other tests too. So, and I realise it will be difficult, now’s the time to practice patience.

My comments on your previous post still hold good. So please try not to worry yourself unduly.

Life with MS will still carry on. Your aspirations are all still possible.


vincentnancy88
8 months ago

@stumbler your amazing with such calming advice!
I know i need to calm the he’ll down but I just can’t seem to shove that awful sickness pit of the stomach feeling.
I worry with having optic neuritis what if I go blind what if my legs give up cuz I love the great out doors.
What if I’m a burden to my partner and children.
Then I sit there n think it will be ok take it as it comes.
I know there are worse diseases out there I watched my lovely mum suffer from cancer n sadly never made it… but if she were here right now I know she’d say id rather have that than what she went through.
I do try to think positive n I do hope that after my mri i get some form of closure..
As for patience I’m world’s worst 😂 i feel I’m making such an atmosphere at home my children are literally my world ( so is my pertner) and my biggest achievement by far I feel awful that they will have to deal with this too at some point.
I’m struggling to eat because I’m so scared.
But what’s there to be scared of right?
I dunno I just feel all over the place but I thank you so much for you kind words n support


stumbler
8 months ago

@vincentnancy88 , if it’s any consolation, I had my first MS episode back in 1985. I worked fulltime, until I took early retirement in 2006.

It is only in the last couple of years that it has really started impacting my life. So that’s some 30 odd years. And, I didn’t have the benefit of the knowledge available now or the advances seen in medical science.

Your prognosis will hopefully be a lot better than mine.

Also, please bear in mind, that MS (if it is MS) may be your condition, but it will have an impact on your family. We owe it to them to keep a smile on our face and be the person they know and love.

Your life will go on. Be strong.


vixen
8 months ago

Hello @vincentnancy88 Tomorrow is my one year anniversary since being diagnosed. Worst still, what are the odds, my younger sister was diagnosed too around that time. I installed a little tip for myself and made her do it too. It was to allow yourself a solid 25 minutes per day to feel stress, imagine worse case scenarios, panic about telling people, etc. After 25minutes, wrap it up and push negativity aside, having served your time for today. If something pops into your head and gets you down, say ‘Nope, that’s on my list to stress about tomorrow!’ It worked for me at least, allowed me some serious wallow time and then revert to being in the here and now, today, my family, my life.

I can’t tell you enough about the impact that stress can have on your nervous system. And for me, stress isn’t based on something that happens, it’s about the way I think about things so I’ve spent the last year getting that under control. And you will too, if that is your diagnosis And yes, you’re right, it sounds weird but there are way worse things out there. Stay strong xx


jacquib
8 months ago

Hi There,

I was 20 when I had my fist major symptom (paralysis) out of the blue and after having lead a very healthy and sporty life. and was diagnosed at 22 – to be fair I did freak out a little at the time as it was an illness that I associated with wheelchairs and old people – at the time I was one of the youngest to be diagnosed in New Zealand, and due to this was quite actively involved with the MS Society with regards to awareness etc. – even had my 5 minutes of fame doing a tv interview 5 months pregnant 🙂 When I discovered it was unlikely to end my life anytime soon, I relaxed a little but threw myself into researching it. I chose pretty quickly to accept it, compromise with it, and lead as normal a life as possible. I met my husband a year after being diagnosed, went on to have 3 awesome kids and still work fulltime. I try and be good (with regards to drinking/smoking and all other naughty things that should be done in moderation by all), I still have my wine but in moderation and I do eat very healthy. I now have a permanent limp, use a crutch if I am out at the mall or similar that involves a lot of walking and don’t have my hubby with me to hold on to, but for the most part I manage without it. I have just started taking hemp capsules which I have noticed a positive effect from. Thirty years on from diagnosis, life is good, there is life with MS – you just need to compromise, and sometimes do things a little differently – as long as it is the same result in the end, who cares how we get there!


joanne46
8 months ago

Hi
Having being recently diagnosed and treated with lemtrada just want to say thank you Stumbler, Jacquib and Vixen for your inspiring and refreshing posts.
So there is hope x


tusia33
8 months ago

hi @vincentnancy88 i im exactly same position as you. I have not been diagnosed yet, but i saw MS nurse alredy, and now waiting for appointment with neurologist. The only advice i have is that we have to stay positive, i exatlty now what you feeling as its quite difficult for me as well not knowing what You dealing with , most important thing dont give up and stay positive X hope we both get some news X all the best
Marta


marcyg921
8 months ago

Its really all about learning what you can actually do when you have MS. Now first of all as you’ve said you haven’t been diagnosed as of yet so just try and calm down until things start to get sorted. As for MS with me, it does come with a permanent bad left hand (though who knows) and a case of depression and anxiety but everyday I try to figure out what causes to trigger these things and try and prevent it. I’ve managed to cut down my hours to relieve stress, I try and get out more even if its with family to help with the social anxiety and I try and walk more to help clear my head of any thoughts I have.

A few months ago when I felt the best I had in months I posted a status on Facebook about how much things have improved and I couldn’t thank my friends and family for sticking by me in 2016 when I had 4 relapses and was getting the diagnosis. During that time I wanted to shut everybody out because I just felt that they didn’t understand what I was going through and that they wouldn’t be helping me but they never left my side and did everything they could to help me get through it. I promised them that as long as they believed in me and that I wouldn’t let MS stop me from living my life then I wasn’t gonna let them down by just sitting around and doing nothing.

Everyone has good days and bad days even with people that don’t have MS but that’s just life. Life can be seen as unfair especially when you get diagnosed with a lifelong condition but in the end I can’t change what’s happened but I also can’t change the fact that I only have 1 life and I aim to use that life to make myself and the people I care about happy.


nutshell88
8 months ago

I was daignosed 13 years ago. MS never took anything of my life actually ehatever doesnt kill you makes you stronger I succeeded in my life much more after daignosis.
I dont like thinking of negative things and im not a big worrier kind of person.
And I believe if the mind is comfortable nothing can win against it not even MS.

i hope u dont have any serious issue.

Kind regards
R

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