karmenms 12/12/17
Last reply 7 months ago
Feeling lost

Hi, I am new in this community, but I just wanted to express my feelings. I am in my twenties (I am newly diagnosed-just a few weeks ago) and I feel like my life will not go as I always wanted it to go. I always wanted to meet the love of my life, fall in love, finish my studies and have a beautiful family and normal mediocare life and now I am afraid that I will not get to have any of that. I would really love if you could just give me some positivity and examples how you achieved something that you really wanted while having MS.
Lots of love and happiness to all,
Karmen

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stumbler
7 months ago

Hi @karmenms and welcome.

A diagnosis of MS is a bit of a shock, but it’s no longer the condition which has made it a taboo subject for too long. It’s now a manageable condition, with a range of treatments now available, that can make your MS become nothing more than a slight irritation.

As we say here, a diagnosis of MS is not about giving up on your ambitions, just rethinking how to achieve them.

So, live healthily, eat healthily and avoid stress, which just makes MS worse.


bensdad
7 months ago

Hi Carmen, My son is 21 and in the same boat RE the MS diagnoses. It is a big shock and trying to get his head around things. He only found out about 2 weeks ago. You are in the right place for support, there are some wonderful people on here. I don’t think your life is over but I can understand the brain fog, he is similar. It will take time to sink in but it will get easier. It is hard when you are young because you worry a lot more. There is no reason you can not fulfill your dreams. Just because you have MS does not mean you do not deserve love! Be good to yourself, cause nobody else has the power to make you happy! (George Michael)


vixen
7 months ago

Hi there. Sorry you’ve had all this going on! Here are lots of people in their twenties using Shift so you’re in great company. I am older than you and diagnosed a year ago. I can see why you are worried about the future after getting such news, but @stumbler is right; Your MS will be managed and there are lots of ground breaking medications coming up through the ranks. The most important thing at the moment, based on my own experience, is to allow yourself the time to process this shenanigans and make sense of it. For me, I feel like it took almost a year. However, along the way, there have been some startlingly good things happen. I have a really clear idea of who I am and what I want in life. I try to keep fit, my diet is amazing, and I have developed deep and suastained pathways with my nearest and dearest. I don’t think things would have been like that had I not got a diagnosis. Don’t over google at this stage and only use reputable sites like MS Society. Falling in love, family, studies, nothing about MS suggests those aren’t in your grasp, it’s just we sometimes have to be creative when we look at achieving our aims! You’re going to be good and fine; there will be bumps and hiccups. Face them when they’re there, not before. You have lots Os upport here x


nutshell88
7 months ago

Hi there @karmenms

I am a Saudi woman now I’m 30 I was daignosed when I was 17. 2005 i finished highschool
Uni
Then in 2012 i moved to Scotland to meet the love of my life he was Scotsman.
Met him got a flat in a hotel. Because I was working and studying Englosh at the same time in Scotland which is strange land to me different language.
I passed 2 courses while working for citizens advice.
Then after 3 yrs I broke up with my ex it was my choice now I’m in my country and also have a job. Nothing can stop u getting symptoms isnt the end of the world for most ppl they cure itself.

Forgot to mention I dont suffer any disability.
Havent taling greatmrnt all my life.

Life goes on its not a deadly disease it only gets worse when we worry and think that life is over.
Its not.
I adapted my MS i only got 2 serious relapses 2005 2010
Now ms never make a sign for yrs.
And I’m still hoping to start a family have children just like u why not.


chezy17
7 months ago

Ok, I’m tired of the doom and gloom scenarios…honestly…so you have MS…you can have a normal life and do the normal things! It’s not a death sentence!! Go be happy, go find the one, if he exists let me know and send him my way 😜…xxxx


londonlad
7 months ago

@karmenms

Hey, and welcome. It’s pretty normal to have a lot of negative thoughts like you are having. We all went through this with our diagnosis, to some degree, and in our way. It will take time to digest and for you to get your head around things.

The more you learn you’ll seee that there are a lot of ways to manage MS these days. And then I’m sure down the road you’ll be discussing treatment options.
All of this will help empower you and get you feeling a bit more in control.

The truth I’ve found out about MS is, while it can vary dramatically from person to person, is that it is now a manageable condition due to developments in medicine, and by the nature of the condition itself. It’s not something that generally progresses quickly. And when caught early and taking treatments you can likely expect long periods of minimal impact.

You’ll read a lot about exercise, eating healthy and these are all good changes, regardless if someone has MS or not.

In many ways, my MS gave me a kick up the arse. It woke me up to a lot of negative lifestyle choices, and I’m really happy with the changes I made. It also made me relook at some relationships/ friendships.

It may be hard at times, I don’t want to talk as if there Wont be some negatives, as it’s of course at possible at times it will be hard.

And rather than dream of the “mediocre” life you wanted. Aim much more ambitiously, MS or not, you can still achieve eveything you want, and more.
I’m sure you can turn this into a positive.

I wish you all the best; I’m glad you found this site. It’s full of wise and experienced people living with, or with someone that has, the same condition you have.


potter
7 months ago

I gave myself two weeks to mope around and cry and then it was time to battle this disease. So I started researching DMT’s, diet and exercise. Deciding to fight this disease may me feel energetic because I was actually doing something and not sitting around feeling sorry for myself. You are young and have many treatments to choose from, when I was diagnosed there was two. When my aunts had it there was no treatments available. I believe the researchers are close to finding a cure. Good luck with your fight. Potter


stumbler
7 months ago

That’s a little bit harsh, @chezy17.

We all had to go through the emotional rollercoaster of diagnosis. The “doom and gloom” is just one phase of coming to terms with everything.


spunky
7 months ago

@karmenms
We all know how you feel! It is always a shock no matter what your age.

You wanted to hear good stories, I was diagnosed 2.5years ago after getting optic neuritis and I have had no other ms related symptoms since then and have had 2 sets of MRIs that indicated that I had no progression. I did get on a dmd soon after diagnosis so not sure if that is contributing to my success.

You have every right to be upset I know I was too but that phase will pass.

Take care,
Spunky


cammo
7 months ago

@karmenms Don’t worry about it.
To be honest I often forget I have MS. It hasn’t stopped me from doing anything, in fact it has motivated me to do things. I actually think MS was a god-sent. I quit a shitty stressful job and found an awesome job the same day, exercise more, sleep more, eat less fatty foods, enjoy my family more. I appreciate every moment now for what it is, rain/hail or shine.
You will be fine, go live that mediocre life and be happy.


edmontonalberta
7 months ago

I clicked your youtube link!

Living & having fun today was always my priority. So far, so good…

If you follow my attitude, you will do well.


karmenms
7 months ago

THANK YOU SO SO SO MUCH ON ALL OF YOUR KIND WORDS OF SUPPORT! I cannot begin to tell you how much this means to me and how lovely it is to see so many people caring for each other and bringing each other up. I am grateful for all the comments which really made an impact on me and gave me strenght to go foward. I really hope everything goes well and I am sending love and hope to all of you.
All the best,
Karmen
@stumbler @bensdad @vixen @nutshell88 @chezy17 @londonlad @potter @spunky @cammo @edmontonalberta


chezy17
7 months ago

@ stumbler It wasn’t meant to sound harsh, the point I was trying to make was that you can live a normal life. You can either hide under a rock and let it tear you down or you say sod it and live your life, fight or flight so to speak!

I get my bad days when I feel tired but I write them off and think tomorrow is a new day:-).

Life is too short, live your life, you’re only here once :-).

Take care everyone!

X


stumbler
7 months ago

I agree with your attitude, @chezy17 , but this member needed a bit of sympathy, as she picks herself up. 🙂


marcyg921
7 months ago

This is a whole new experience for you so you have every right to be worried about what the future might hold. It’ll take some time (heck it doesn’t even sound like you’ve had treatment yet) but don’t let MS control your life. I was diagnosed a year ago and I’ve refused to let this condition defy who I am, do I have bad days, yeah but its important to learn from them bad days and take a step back and think of new ways to carry on living your life as best you can. Also never be ashamed if you feel the need to rant on here, sometimes its hard to tell people who are close to you what you’re really feeling and the worst thing you can do is bottle it up so if you ever want advice, guidance or just a good old rant this is the perfect place. MS I can promise you WON’T stop you from doing the things you want to do in life, it’s just gonna take time to come to terms with this condition and how to handle it and as soon as you’ve done that, you’ll start to have days where you forget you even have MS. Best of luck to you :).


vickya
7 months ago

After diagnosis, 27 years ago, I still got promoted at work, got married, I still travelled (including going round the world). The only future proofing I did was saving some money as well for the “rainy day” and getting a house that had access (i.e. good parking, not on a slope etc). My point is just live your life and enjoy the present, appreciate the “now” but when you get the opportunity and when appropriate do consider your future too, like in choice of housing. But I have always planned to be as well as I can whatever and keep control of my life e.g. exercise, diet and mental attitude.
As cammo said it was also a gift for me too in a strange kind of way – you prioritise what really matters and I have found out so much about life, the universe and everything since.

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