Anybody else feel this way?

Everyday living
1

Hey everybody,

It has been just over a year that I had my mri that lead to my diagnosis, though I’ve been having symptoms for some years. I have mainly sensory symptoms, so feel that I should be able to ‘just get on with it’. However my emotions are all over the place, due to this I’ve lost a close friend as I keep cancelling outings that I just can’t face. I’ve been part of a ‘crowd’ for a few years and now I just don’t seem to fit in or be able to keep up. I used to be the first on the dance floor and up for anything, boy has this lass changed. My family are fantastic, I keep a smile on! Ms has become the elephant in the room. I just feel safer at home with the front door shut. I never mean any offence to anybody, I’m just not the person I was. I’ve become quite solitary. Just wanted to know I’m not alone in this xx

2

Boy that’s a ramble! Feel better for it though, sorry guys x

3

Hi Sennen, you are not alone! I’m glad you feel better after your ramble, it helps to let everything out :slight_smile:

I’m sorry to hear you lost a close friend due to cancelling on them, but perhaps you’re better off. You don’t need negative people in your life who don’t understand. You need supportive people. It’s great to hear your family are supportive.

before I got diagnosed I also had a big group of friends, but following diagnosis they gradually dropped like flies. I have a couple of close friends but i have come to learn that it’s quality not quantity :slight_smile:

remember you are never alone, and there’s plenty of supportive, understanding people on here.

do you go to support groups? Perhaps you may find friendship there?

take care x

4

I’ve become a complete hermit since being unable to work because of the MS. Not that I was a party animal before you understand! I’m very introverted so I’ve never had a big circle of friends, but my real life friend count is basically 0 now. My socialising is done online, and I’ve made some very good friends, but they all live thousands of miles away…

So you’re definitely not alone in these feelings, believe me!

5

It takes a long time to get comfortable with your altered reality. When your DX is new the contrast between how you were and how things are now is very stark. I’ve had MS over 20 years and the younger woman who used to race around is just a distant memory.

"Just getting on with it " is doomed to failure I’m afraid. I’m not a fan of waging war with your symptoms because on the whole it’s a fight that you will not win. It is more realistic to acknowledge that you need to make adjustments - and to be honest about those adjustments to others. I’m not suggesting a wimpy wallowing in every little twinge but life will not flow on as before. Your friends will understand if you explain - you could for example still go out but bail at an early hour and not expect to party till late!

Becoming solitary is very common. It’s easier to cope with your limitations when you don’t have to deal with the expectation of others. BUT please be wary of this approach because you might find yourself very isolated in the future. I cut myself off from everybody because I couldn’t keep up. I now know that I did those people a grave disservice. I had a wonderful councillor a few years ago who encouraged me to reach out. He said that instead of automatically refusing invitations I should outline what I needed. (I’m in a wheelchair now so I have quite specific requirements) I was delighted at how successful this approach was. I was upfront about my difficulties and my friends (some of whom I had not seen for years) rose spectacularly to the challenge.

good luck, it’s early days yet - you will find a way through all this I’m sure.

Jane

6

I feel the same! I always preferred having a few “good” friends to lots and lots of people I’d probably rate only as acquaintances. But one of the “good” friends turned out to be a fairweather friend, and a total flop when it came to my diagnosis. She went into complete denial - I think to protect herself, rather than me. I just got no recognition at all of anything serious having happened. When I lost my job, less than two years after diagnosis (but unrelated), she was still going on about the glittering new career I was going to have - as if I wasn’t already 46 and seriously ill, and couldn’t manage a job stacking tins if I was offered it! I actually found her positivity offensive, as it was such a denial of reality. Obviously I didn’t have a “glittering” future ahead, even trying to put the best possible spin on it. Pretending otherwise was just insulting. I needed her to acknowledge and support me with the reality, not try to pretend it wasn’t happening, and make out everything was rosy.

Another friend I hadn’t rated so highly really came into her own when I got ill. She was very practical and unsentimental, and didn’t try to ignore what was happening. She came round with flowers, and cleaned the house for me. Sadly, she herself was diagnosed with Alzheimer’s only a year or two later. Its progress has been very aggressive (much more so than my MS) and I’m not sure she even knows who I am. Certainly, meeting up for lunch or coffee is out of the question. I don’t drive, and neither does she, now. So I can’t say: “Let’s meet up and do lunch” (she wouldn’t be safe out on her own), and I can’t offer to pick up and collect her…

I have made a couple of new friends since leaving work, through other activities, but they are both much older than me - nearer my mum’s age than mine. I’m not being discriminatory - you can be friendly with someone of any age if you’re on the same wavelength - but at my age, the trouble with friends 20 years older is you don’t know how long things can continue as they are. I know some people might be fine into their 90s these days - and I’m not well myself. So it might be my health that stands in the way of doing normal stuff friends do. But I don’t think it’s terribly healthy having three friends, of whom one already doesn’t know where she is or what day of the week it is, and the other two are Mum’s age! It’s not as if I want to go skydiving or anything, so it doesn’t matter as much, but I do wonder: “What is the future with this?” My vision of the future is going to funerals!

Tina

x

7

Hiya

its early days for you . I’m wondering if counselling my help ? I wouldn’t mind betting you will get back on that dance floor once again .

best of luck

Kat x

8

HI Sennen

It’s not quite 3 years since my diagnosis - and I went along the line of “just get on with it”, but it hasn’t worked! Earlier in the year things came to a head re work and I was signed off by my GP… after an enormously difficult couple of months, I resigned because I just could no longer do my job in the way that I wanted to. (I’m sure many would think this not the most sensible course of action, but I believe it was the right decision for me at this time in my life.) I realised that the ‘old’ me - the one that just “ploughed on” and got on with stuff - is gone for ever. So, I’m now at the start of a new chapter in my life; one or two friends who have difficulties of their own are still around, one or two older friends are there for me. But there’s a big, sad hole regarding some who I’d thought were ‘good friends’ and who just can’t hack it! Makes you more grateful for those who are there. I’ve surprised myself at how much I enjoy being at home - but am conscious of the need to get out regularly and not turn into a hermit! I’m glad your family are supportive. It’s very early days for you - and you will find a way to cope with all this - but be kind to yourself, take a day at a time, and don’t be afraid to explore opportunities that come your way albeit in a different way than you would have done in the past.

Hazel

1 Like
9

Hi Sennen

I think we all cope in different ways. I returned to the U.K. 5 years ago, having lived in the sunshine for 20 years. Only bought one large case of clothes with me, most are only suitable for the heat.

I weighed 5 stone, lost 3 stone over a period of 18 months, broken five bone in separate falls, the health service in the Canary Islands was in total collapse.

The wonderful national health spent several months sorting me out. Almost no red blood cells and weak as a kitten.

It took me a year & half to get back up to 8 stone and when finally I got my MS diagnosis, I celebrated, at least I didn’t have cancer.

My wardrobe was almost empty, so gradually I ferreted in Charity shops, the markets and cheap clothing stores. So now in order make the effort and face going out, I take time, (used to shower, dress etc. and be out of the door in 5 minutes) Now it takes about 2 hours for breakfast, shower or bath, dress etc. So my solution is to colour co-ordinate. I have purple days, fushia days, turquoise days, orange days, black & white days. Shoes, handbags, leggings, tops, baggy cardigans, earrings, sun glasses, hats, even my walking sticks, in fact the whole shebang. It is such an effort to get ready anyway, so I did it initially to cheer me up, but now strangers in town stop and chat as they had noticed that every time they see me, I have a different colour.

During the last six months my hands are too weak to hold a hairdryer, and have found a wonderful salon that only charges £9.90, so every 8 days or so I go to the hairdresser. (P.I.P. at last approved so I can afford it now) A few months ago I had some dark red highlights (in my grey hair) Only 11 foils, just to brighten me up a bit. The following month I had 11 in purple, then in turquoise and last week I had the same in bright fushia. I look like a rainbow.

It is unbelievable how many people stop me every time I’m out to ask me about it, surprisingly the majority are older than me (64) and want to try it too. Needless to say my hairdresser is happy with all of her new clients.

I know it sounds a bit crazy, but whatever clothes you wear it takes the same time and effort every morning and it makes me so much more cheerful. In January I found some cheap plastic ponchos on the internet for less than £4 each, so now my mobility scooter (and me) are covered in the same colour as my clothes when it rains.

I hope you soon find your mojo to discover small things to make you feel good about yourself - Take care - Mary x

10

Well done - you are inspirational to us all. MaryMojo!!!

11

Hi guys,

I’m new to the forum so please forgive any mistakes!!

Just wanted to say sennen that I often feel the same, I too suffer mainly sensory symptoms and pain. I often feel low and frustrated then guilty, because there are people out there far worse than me.

i have got better over time, I think that was when I finally adjusted to having Ms, which took me a while I have to say.

its just over 8 years since my diagnosis, and in that time I have found who mytrue friends are and who are the ‘fair weather’ ones. Just recently I have decided to pretty much sever all ties with my closest friend of nearly 30 years, as the only time I ever here from her is when she has a problem or something amazing is happening for her. I feel so much happier for making the decision, as I feel I am more positive when with my supportive friends who understand that sometimes I’m just not up to making that trip out.

X

12

Hi Sennen,

I was diagnosed in March and I have to say my emotions have also been all over the place. I saw my GP because I was struggling with the Fatigue and the emotions being so all over the place. She diagnosed depression which I didn’t agree with her on and she prescribed me Citalopram. I have to say although I hate to admit it, it has improved things from an emotional perspective I feel more stable. I still don’t think I’m depressed but I definitely had emotional lability.

Snowqueen x

13

I think coming to terms with a diagnosis of MS is a process rather than an end goal. Its been over two years for me and its only been the last few months I’ve felt some longer lasting peace. I still have the occasional emotional relapse and sometimes it seems to spring from nowhere although most the time I can identify what triggers it.

I’ve tried various coping strategies over the last couple of years, some more healthy then others! My advice is to be kind to yourself and take one day at a time. Time is a great healer and you will find your new baseline.

14

It’s been nearly 2 years since diagnosis for me and I’m not sure that I’ve come to terms with things. Ironically the MS has done me a favour in a way, because it’s had a big impact on my ability to react to things, my friends online say things like, “you’re so calm about it, I’d be freaking out!”

Maybe I would be too, if I was able to…sometimes I catch myself thinking things like, “this isn’t really happening to me, is it?” so part of me definitely doesn’t seem to have accepted things, I’m not sure if that’s a good or bad thing to be honest!.

15

Hey everybody xxx

Wow, I didn’t expect any replies, so, so kind of you all. Wouldn’t it be great to all get together and put the world to right over a slice of cake?! :relaxed:

It’s so hard to accept how relationships change with all this. I’m going to be more positive today, I’ve got my beautiful family to think of. I just never expected to have something turn my life so upside down and inside out! I celebrated my 40th birthday last year and thought I’d got everything together.

One of my aunties has Ms and I’ve always felt sad for her, she is now 74 and doing really well, still going out, just moved home and is decorating it. So there is hope!

So I haven’t heard from the ‘friend’ since I told her that I wasn’t up to going out, I guess that speaks volumes. I can relate to lots of things that you have all said. So I thank you all again, so good to know I’m not alone and going bonkers.

Hugs, Sennen x

16

Hi Sennen - a get together sounds great - 'specially with cake …hehe . I’m in Devon, so if anyone is close enough to meet up please get in touch.

For anyone not close by - probably all of you! - sending big gentle hugs.

Hazel x