i need help

Everyday living
1

i hate this affliction i suffer from, just had the most horrible year, and today has topped it all off, iv lost my job (my own fault), it was all i lived for, all i really had, family are getting older and more distant, seperated from my partner, we grew apart, my friends have grown up and had there own families, i dont socialise anymore bcos of this illness, i cant take part in anything, i dont know what i am going to do with myself, i dont know how im goin to afford to pay for my rent and utitlities, im so scared now bcos there arent many jobs out there that are suitable or i can even physically do, i dont know how i am going to survive, i dont want to just survive, i want to live, but i dont see how thats going to be possible, i just dont want to be here anymore, eventually i am going to end up on my own, but i also dont want to hurt people and or let anyone down, anymore than i already have.

is there anyone else out there thats gone through the same thing, im sure there are, please can someone tell me what i should do, i am only 29, dx 2 years ago, its been 2 years far too long now, im too tired to go through all this anymore

2

Hello,

My first advice would be don’t suffer alone! talk to your gp. They can help you get back “control” of some things in your life.

Im 28 and was dx last year, i lost my job and am on ESA at the moment. You never know what is round the corner, i want to go back to work and have a career. I’m far from ready to work but their will be something at some point. Never give up.

Darren

3

thank you darren, i just dont know what to do, i worry bout whats next, life just seems to be one disappointment after the other just now, has been for a fair few years now

also, i viewed your profile, my bday too is feb 13th (strange) and when i was 19 i studied civil engineering (strange too), we share a lot in common, i hope everything works out for you

4

Hi anon My immediate advice would be, ring the MS society support line and get yourself a voice on the end of the phone so you have a real person to share your fears and anxiety with. The number is 0808 800 8000 Sending (((())))) Xx

5

Hi Anon, First, are you really sure it was your fault? If it was for reasons connected with your illness, you might have grounds for an appeal - although probably not, if you hadn’t told them you had MS. They don’t have to accommodate things they had no way of knowing. I lost my job last July, after 23 years. I don’t think it had anything directly to do with the MS, as several hundred of us were laid off at once - but who knows if I might have made it into the “indispensable” group, if I’d been well enough to do more than just get by at work, and meet the minimum demands of the job. I was actually quite relieved for the first few months, as unlike you, I hadn’t lived for it, and didn’t realise how much it was dragging me down. I’m a long way from starvation yet, but starting to feel a bit sad and bored, and like you, have a horror of finding - or even looking for - anything else. It doesn’t help that for years, I’d been a homeworker (not directly because of illness - just lucky). So I can’t imagine going back to setting off for the bus or train at the crack of dawn each morning. I think I was already starting to struggle with that years ago, which was the last time I ever did it (before I knew I was ill). Although I worked for a large organisation, because it was from home, I didn’t have a huge network of contacts I saw regularly, who I’ve continued to socialise with, or might help me find another job… I honestly don’t know what the answer is. I just wanted to answer that yes, other people do find themselves in this position. I don’t have family locally, or a partner either. I would certainly review your assessment of whether it really was your fault you lost your job. Even if you wouldn’t contemplate an appeal, it’s probably not the best way of looking at it, if the real underlying reason was you were ill. I’ve no idea if you were late, or didn’t turn up, or just didn’t perform the work very well. But any of those could be attributable to being ill. It doesn’t mean you’re a bad person - or even that you were bad at the job. You might just not have had the right help to keep you going with it. Tina x

6

i agree with mrs h - speak to someone! just yourself in 4 walls is going to make everything escalate. there WILL be some form of help out there for you - you just need to ask. when i phoned the ms society after my diagnosis they stressed to me that they were there for emotional support too. you are 29 with your whole life ahead of you and no matter how bleak it seems at the moment it can and WILL get better. please don’t give up hope xxx

7

Hi

I can relate to many of the things you’re feeling - I’ve had them, and can still have them. As time goes on though I’m starting to learn that there’s always hope - even if a situation may not change, the way I look at it may. I heard a song years ago with the line ‘Everything’s going to be OK, but only when you’re definition of OK’s been re-defined.’, and that’s something I can definitely relate to. I had a time when I was in absolute pits of despair, unable to walk, unable to work, single, wanting to die. Since then I’ve started working again, I got married, I learnt to drive using hand controls, I raised over £1600 for the MS Society by jumping out of a plane… I’m much better at knowing myself and what my needs & wants are, and looking at how I could achieve them instead of only seeing the things I can’t do. I’m not always able to do that of course, not by a long way. But I am learning.

Something you may find reassuring is knowing about the stages of grief (google it to find out more) - things like denial, anger, depression. It’s not surprising that we may find ourselves grieving our old lives. But when you’re in one of the stages it’s easy to think that’s all you’ll ever feel, but it is a journey you move through, and the final stage if acceptance, and that’s when you’re more able to take control and move on with your life.

A little exercise I sometimes do that helps me is to do a little review at the end of the day. I think back over the day amd notice the things that energised me, that I enjoyed, where I felt like I was being me, or that felt like they were good for my soul somehow. And I also do it for the opposite things - the things that de-energised me, where I felt empty somehow or where I wasn’t being me. As I’ve done that over time I’ve noticed similar things come up on both sides, so I know now to try &remember to choose the things that energised me, and if possible not do the things that drained me. So for exampe, I know that watching mindless telly all evening will leave me feeling a bit empty & frustrated. But if I do some writing, I feel much more alive. So given a free couple if hours in an evening, it’s more obvious what sort of thing I should do.

On a more practical note, I reckon it’s worth speaking to something like Citizen’s Advice to find out what help & support is available for you.

I’ve waffled on for far too long, but I hope you found some of that helpful.

Dan

8

I have multiple sclerosis and have started a new job in December of 2015 I am still in my probationary period and I have had 4 seperate ocasions off work sick due to m.s I had a relapse in jean when I was hospitalised for over a week, then I went back to worked to soon then I had to take another few days off due to fatigue because of the treatment I had for my relapse,then I had one bout of vertigo that I had to stay off for and just recently I had to be off as I am unwell due to having a flu jab and a pneumonia jab…I have been in contact with my heal care team and my disease has progressed so I am being put onto a more aggressive treatment to hopefully reduce relapses and help me live a more normal life…I really love my job and want to keep it do you think that I would be sacked for these reasons…they have been really understanding with me but I would like some advice please.