Last reply 5 years ago
missing out..

I just feel like in the 7 months since my MS diagnosis, I’ve missed out on so many things. Events, parties, gatherings, work. I feel like I don’t see my friends and extended family as much as I’d like to, and I’m sick of feeling like I’m missing out all the time. I’ve really been trying to push myself to do more lately, organizing get togethers with friends, starting different activities etc, but again today I cant get to a family event that I’ve been looking forward to. I’m just really feeling horrible today and am not up to it, but so badly want to be. I just don’t know how to deal with the frustration of my body going against what I want to do.. I know this is only the beginning of this, and I just don’t really know how to accept that. Does it ever get easier?

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5 years ago

Oh sweetie welcome to my boat! I’ve only been diagnosed since December but have had symptoms for a while longer but I’d say I’ve been seriously held back by this thing for the past 10 months. I’ve had to move back in with my mother and I don’t have to energy to look for a job let alone actually work one! I now live so far away from my friends and my old life that it takes planning and hard work to see people. I had the iv steroids in this past week and it has made me feel a million times worse than I was before but I’m still trying to stay positive and hope that it will get better. Having chatted with people both online and in the hospital this week I think there’s a really good chance that it does get easier, it will always have it’s ups and downs but it can be somewhat managed. I’m really clinging onto that hope at the moment! I know it’s not much help but I’m sending you virtual hugs and letting you know that you are not alone, I feel exactly the same as you do right now, having an awful day but we will both get through it!

5 years ago

It does take time to fully understand the impact of MS on your lifestyle and how best you can manage this unwelcome addition to your life.
Yes, it can be isolating – you don’t want to put yourself out there and friends/family don’t really know what to say. Yes, you are the problem, but you’re also the answer! 😯
Within the confines of what is possible for you, you need to get yourself back out there and reintroduce yourself as the same person from last year. You can take the awkwardness out of any given situation.
This is possibly not the answer you wanted, but despite the MS, it’s all in your hands.
I just wish someone would have given me a kick up the butt, quite a few years ago. Then, I might have had a few real friends, in addition to the great value provided to me by all my cyber-friends.
Hope this helps in some small way.

5 years ago

Yes it does get easier! I was diagnosed 2 and a half years ago and remember going through a phase of being too scared to do anything. I convinced myself that I was no longer capable of doing anything and was terrified of feeling awful for the next few days if I so much as go shopping. Now I am far more aware of my limitations and tend not to give my MS a thought when planning things.

It is difficult feeling so crummy all the time, but I think you will get used to how you feel and work with it. It takes around a year for most people to fully accept a diagnosis, and during that year the stress and uncertainty can cause more problems and make the MS worse.

You’re right – MS is so frustrating, but it won’t always feel like that. I find that I go through stages of feeling that way, but on the whole I just get on with my life – I use a stick when I need to, I meet friends for lunch instead of dinner if I’m struggling and I make sure I sit down and rest as much as possible when on the go.

Chin up.

5 years ago

Hi. I know how you feel I went through the same thing when I was first diagnosed. It can be scary to think of going out and then feeling crap for a day or two afterwards. But as said above you learn and become more aware of your limitations and your ms doesn’t factor in as much in your thinking when planning things. Hope you feel better soon and to answer your question yes it does get easier.

5 years ago

You won’t want to hear this probly but you are young yet and its early days in learning to live with a life-changing condition.
Try and concentrate on “I can do…” instead of “I want to..”
Your mind has to adapt to what you CAN do, or not anymore.
I can’t walk very far anymore and eventually have caved and got a wheelchair. But that took YEARS.
You CAN have a social life, and a boyfriend and a wild time! You just have to do things differently now!
Educate your friends and family: SAY..well I can’t make it upstairs, can we go downstairs OR “can you give me a lift to..”
“how about having a girls night in”?
Communication is KEY. Sometimes you have to tell family & friends, well today i feel shit and need cheering up.
You will make new friends and you have already started by coming on shift.!!!

5 years ago

Thanks everyone, I know I need to learn to adjust, it’s just some days it seems harder than others. I appreciate the support!

5 years ago

I know it is hard but i too will say that it gets easier! I have been diagnosed now for nearly a year and told i have had MS for 4 years now ..and i would say in the last 2 months i really have stopped thinking about my MS so much. When i feel like i cant go to something i often ask myself why not… what is physically stopping me? nothing but my fears, thoughts, worries. If i am not feeling all that great maybe i will do dinner with my girlfriends and skip the bar which i am ok with… try going anyways but finding ways to make it work for you. 🙂

There will be a time where you dont even think about it… i promise 🙂

5 years ago

Also try not to think “this is only the beginning and it is only going to get worse”…. try to remember that if you are relapsing remitting that is not a progressive form of the disease and if you ever turn secondary progressive it can still take YEARS and YEARS to impact your life from a mobility aspect.

Dont count yourself out of the game just yet 🙂 you can be old and grey and using a cane like very other old and grey person 🙂

Keep your head up!

5 years ago

@mrshawk Im trying not to think that it will only get worst, I really do try to stay positive about it all. I think its just such a big part of my day to day right now, with my current symptoms etc, its hard to forget about it. Im sure in time i will figure out how to balance everything a bit better 🙂

5 years ago

@melissa.g of course you will. Everyone will go through their own process with this in their own time and way. The thing i keep telling myself is that i am really strong and i am going to enjoy my life no matter what happens because i have a great life… MS cant take that away. And i also tell myself i am going to be fine… please do remember that although this disease may be a tough one for sure… only a small amount people become severely disabled… your chances and managing this disease just fine is really high. I remember i told my therapist that i was scared to grow old with this disease… and she said to me instead of picturing your life with MS when you are old… imagine yourself as a grandmother… this made me realize that if i dont give MS the power… it wont be powerful 🙂

I am really into the power of positive thinking and i am sending some your way 🙂

Have a great day xo

5 years ago

Cheers Mrs Hawk your comment ” try to remember that if you are relapsing remitting that is not a progressive form of the disease” has just made us PP’s feel “great”! PP is not necessarily worse!

5 years ago

@loulou i am truly sorry if i made you or anyone else feel badly please know this was not my intention. I know it may not be worse… i was just trying to speak to Melissa about the type she has and help her with some of her fears. We are all in this toegther and i truly hope you accept my apology

hope you have a great day


5 years ago

No probs Mrs hawk was just easily read the other way! x

5 years ago

I’m just back from a fab and interesting weekend.
I went ‘home’ to Northumberland. I travelled up by train and was picked up by a mate, who I stayed with. He’s a top chum because he acknowledges my need for reminiscence, aside from MS, and he also takes my limitations into account.
He drove me the length and breadth of Northumbria and I reciprocated by making more effort to walk further. I was knackered by the end of 5 days, but it was, as they say up there, ‘mint’.
Weirdest thing was meeting a friend of his, Adam, a drummer like me, who I learned had been diagnosed 2 years ago (3 1/2 for me). We were in the pub, he stood throughout saying that if he sat down, he wouldn’t get up again, whereas I couldn’t stand. He was drinking water as alcohol has too profound an effect on him, whereas I was beginning a pub crawl around the village.
The top and bottom or moral of this is, you gradually get to understand your abilities and limitations and adapt.
I expect Adam woke with a clear head, but I….. :I

5 years ago

The power of getting out and about, doing something pleasant in good company, as @oskar says! Trouble is, it’s not always possible and even when it is, we (i.e. ‘I’) may avoid making the effort. But as loads of people have posted here, it IS the right thing to do because it puts the MS in perspective.

5 years ago

thanks Cameron and Oskar. I’m slowly learning my limits and what I can and cant handle. I was actually away this weekend with my family in Montreal, had a drs apt there and we made it into a little trip, and ive learned i just cant handle as much walking as I used to. I tried to do as much as i could, but pushed it a little too much one of the days, and my legs paid for it! I suppose it will just take time to figure it all out

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