Forum

Feel like my life is over

Hi.

I really hate to come on here and be negative but I’m really struggling at the minute and could do with off loading to people who get it.

I’ve become so bad I’ve had to stop working and am currently applying for ill health retirement. All of my symptoms have progressed to such a degree that I really can’t do much of anything. Staying in work was always hard but I was determined to keep going for as long as I could.

I live alone and I’m spending lots of time at home on my own and I’m lonely and bored. I go out when I can but due to the fatigue I’m really limited as to where I can go and what I can do and how often I can go out, and again I’m mainly alone. I always dreaded having to stop working as I feared that I would feel really lost without my job but it had to be done as I couldn’t even manage just a handful of hours a week doing admin work at my own pace.

I don’t have great family support for long complicated reasons I don’t have the energy to type so I speak to my mam once a week on the phone and see her once a week for an hour or so. I rarely see my brother as he finds it hard to see me so disabled, I know how that sounds but it’s how it is.

I have a friend who lives near me but she’s only around for about half the year and when she is she’s busy with her grandkids so it can be difficult for her to find time to do stuff.

To complicate matters further when I split up with my partner almost 10 years ago we stayed friends and he comes over two or three times a week and sometimes texts me. However a couple of weeks ago I stumbled upon his girlfriend on Facebook. He hadn’t mentioned he was seeing anybody and now I’m scared he’s going to disappear on me. I feel really stupid being upset by this but he was amazing when I was diagnosed with MS and I don’t know how I would have got through it without him. His friendship is precious to me.

I feel like I don’t even know who I am anymore. I was very fit and active before I got ms and I hate being disabled. I’ve tried being grateful for the simple things in life but I can’t do it. I don’t want to be like this. My gp is referring me for counselling but I honestly can’t see how it will help, there’s no way I’ll ever like or accept being how I am.

I feel really scared and just don’t know what to do.

Dawn x

Hi Dawn

I’m so sorry you are feeling like this. I can totally empathise . I’ve just gone off sick from work as well and feel a total failure .

I haven’t really got any positive words for you, except there are others in a similar position, probably more than we know, who are going through this c*** as well. This is the best place to unload your feelings without being judged. So don’t feel guilty about feeling negative.

There are loads of really kind people on here who will listen, give you advice, or just a (virtual) hug ((((((((((HUG)))))))))).

Have you got an MS Nurse? They tend to know the best people to offer help.

I sincerely hope things pick up for you.

Stay strong.

Al

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Oh Dawn, my poor little love.

I want to try to help you so much and this forum is really caring and you`ll get loads of support here, just like I and ever so many others do.

Being alone must make everything much harder for you. I am lucky in that respect, that my hubby of 45 years is my main carer, plus I have 2 gorgeous carers, who come in daily and help with everything.

I am highly dependent on others, as I can`t do any housework and need personal care, toiletting and am a full time wheelchair user and need hoisting for every transfer.

But you know what keeps me going the most? It`s my carers.They take me out and on short breaks too.

I pay for them via Direct Payments.

What about enquiring about that for yourself? I thoroughly recommend it.

If you`d like to know more about it, please ask. Or you could p me if you prefer and I will reply ASAP.

Love POllsx

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Hi Dawn,

I’m sorry to hear that you’re feeling so down but it’s understandable. Sometimes it’s such a huge effort to get up and motivate yourself to do something positive.

We have to make that effort everyday to shove the bad stuff out of our lives. I think the people on this Forum who are the most positive have worked at it so often that it’s become second nature.

And to do that takes real discipline. It’s not enough to sit down and let your illness dictate what it will or won’t let you do. You have to set yourself goals; even small ones like making a curry or planning a visit to a favourite shop. Do that at regular intervals, whether you feel like it or not, and your life may change without you even being aware of it.

Here’s an idea. Visit this forum every day and find a comment or a question that ignites a spark in your mind. Then compose a reply. Sometimes you’ll get a response and sometimes you won’t. It doesn’t matter which, the important thing is to do it every day.

I hope your find your way and, as Al says there are a lot of kind people on this Forum and we’d like you to joins us.

Best wishes,

John

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well said Johno!

Let`s help Dawn find the light

pollsx

Thank you so much.

I used to do ok but stopping work has really hit me hard. The people on this forum never fail to amaze me with their unending support.

X

HI Dawn,really feel for you.Its hard to stop working when you have been so used to it.You must be really feeling it just now,but it will improve with time,honestly,it doesn’t seem like it will,but it will.Have you an MS therapy centre near you,they are very good,there are treatments they do there and you can just have a coffee and a chat with people if thats all you want.

The thing that helped me a lot over the years was gardening and when i became too ill to garden i just used to do my baskets and pots, when i felt up to it,and i also love to bake,trouble is i liked to eat it too lol.You will find a new normal for you in the end.

go for the counselling though it will help you come to terms with all the s*** that MS throws at us.

J x

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Hello Dawn,

We all face landmarks - mile stones in our working life - for me when one door closed another opened. I took up new interests.

So today, I enjoy not having to rush out the door every morning.

I enjoy hearing my husband push the vacuum cleaner around the house!

When you stop work - you will find millions of people are in the same position as you.

Be pragmatic. You need some companionship - we all do - we are social creatures.

My GP sent me for counselling - which I hated. She wanted to make sure I was okay - I thought - yes I am okay about giving up

work. Sod work!!

What hobbies or interest do you have outside of work?

Part-times courses are everywhere - including online ones.

Facebook groups are a great way to share interests - and meet people.

I think it’s a case of reinventing yourself - just being aware of your physical limits and investing in scooters/powerchairs etc.,.

and doing the ESA and PIP forms to give you an income. It can be done. Stay positive.

Lots of help is around on this forum.

Fay.

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Hiya Dawn,

I empathise with your situation. I have PPMS and am also alone. My son lives away at Uni & I really have only 1 close friend.

I don’t think there is an easy way to get past this, other than to just do it, 1 day at time. I too gave up work about 7 months ago and have been learning to adjust to the isolation and solitariness since then and I think, and hope I am starting to make inroads to a place where I can learn to manage and live with and be at peace with the changes that MS brings with it.

For me, I think it has helped that, due to circumstances, I have always been self sufficient as far as the companionship of others has been concerned, having been a single parent right from the start, having little money for socialising etc & so have long ago become accustomed to my own company and relying on my own resources. Of course, having MS makes this much harder & I have found that others in my life do not seem to want to talk about it, which makes me feel like I can’t either and that this is my burden and is likely to remain so, so I had better get used to living with, managing and accepting it the best I can.

Slowly, over the last few months, I have started to work out a way to live that suits me and keeps me as healthy and mobile as possible for as long as possible & crucially, mentally content too and ok with just having myself to rely on.

I am fortunate in that I have always enjoyed watching various sports and there is always plenty on the sports channels to distract me if I am having a ‘woe is me’ day. I am learning to listen to my body, and if it’s telling me to stop and rest to bleedin well do it

I try to do at least one useful thing a day, be that cooking a more complex meal, tidying up a drawer, cleaning the bathroom, watering the patio plants or something equally mundane but necessary rather than just sit and let MS become the boss. I demand to at least be a partner, even if not always an equal one. I am grateful that this week I can change the bed sheets, I am grateful to do the washing up, I am grateful to iron a few t-shirts, as at sometime in the future, I may no longer be able to do these things. Going out is harder, but I do sometimes and just accept that I will have to have a few quieter days after to regroup.

This is still all quite new to me and I am a long way from finding my optimum way of living with MS, the down days & tears, the necessary changes & tweaks as progression occurs, but I hope I have made a start and am quite sure you will too find the best way forward for you.

Sorry the post has been so long, and feel a bit like I have hijacked your thread. Just a long way of saying really, you are not alone in facing this alone, so to speak and sending you best wishes and thoughts.

sally x

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Well put Sally: a shared experience for many.

Have you got a powerchair yet?

I’m hoping one will be life changing.

I love the countryside, and want to get out and about.

I want to do some plein air painting and join a group.

Fay

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I do art classes on a Wednesday afternoon (when I’m not planning to invade somewhere with the loons at the Brain Fog thread).

Regards,

Anthony

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Hi Fay, a powerchair or wheelchair WILL enhance your life, no end.

Have wheels will travel!

Good luck chuck.

pollsx

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I hope so Polls. I’ve got one on order to try out at home. A big change for me.

Regaining some level of independence after 12 months at home.

I was just looking through the Parish mag - there are lots of local groups I’d like to join.

I live in a small village - so not far to travel in a powerchair.

And I’ve been looking at local maps around the village to see how I might navigate the fields and country lanes.

Planning will be essential for my painting field trips - I’ve got a big paint box to carry somehow.

I might need a backpack for the chair or a trailer of some kind.

Fay

OMG Fay, you might have to put proper clothes on and leave the PJs at home. Will you cope? Sounds intrepid of you, planning off roading already. Good luck with it.

Sue

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Just finished 4 months with the Community Rehab mafia - but need to continue sitting out of bed 4 hours a day.

I thought - once I get the powerchair, I could try just sitting in the powerchair instead - some short painting trips - views of the

village, the heath, the Saxon church.

There aren’t many people around - I’m rural - I can pull a sweater on over my PJs - no one will see me.

Well, apart from a few cows and the odd dog walker.

Actually, I must learn to draw cows.

Fay

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me again. Yes, your wheels will be fantastic to get you out. But dont be too ambitious at first. After being housebound for so long, you may feel a bit woosy! Will you be taking a friend with you for company? Joining groups will be great.

I`m getting new wheels next week…in the form of a wav…wheelchair accessible vehicle.

My carer Bev and hubby will be my chauffeurs. I`m already listing places we can go!

Innit exciting?

pollsx

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Brilliant news Poll, … ain’t no stoppin’ you now…

as an old rocker , for some strange reason this came to mind Aint No Stopping Us Now Mcfadden and Whitehead - YouTube

Mick

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We’er going a bit of line now chap’s, but i do see where ya going! i’m trying to my get OH to see the benifits for us, well, rather ME!!

As you can see Dawn, we all different, but one thing in common, we hate the change’s it’s brought & have to make

but we do! & we always here, take it!, run with it!, (so to speak) but try to excel at what ya can lots of good ideas & advice

julien xx,

& we got are like button back,itz always a good good day with a like button

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An excellent response Sally. You’ve put into words exactly what I’m feeling and thinking, as diagnosed two years ago, rapid loss of mobility and a wheelchair user for about a year. I no longer drive and most certainly have tearful, woe is me days. Then, like you I have to kick my own ass and be grateful that today I was able to put together two meals for the freezer, transplant some pots in my yard and manage to do my own hair wash and dry. I hope I still can this time next year!

Just keep plodding along Dawn and learning to accept this, is half the battle, because it’s one you will not win. Our new normal. :slight_smile:

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Hey Dawn

If it’s any consolation, so many of us can relate to what you’re feeling, we’ve all been through it. This may not help much, but time is a great healer. It takes time to grieve the loss of your old life. You may find you experience some of the stages of grief - denial, anger, depression (I definitely did!). The final stage of grief is acceptance. That doesn’t mean liking what’s happened, but it does mean you can begin to rebuild your life & move on. I know you said you don’t see how counselling will help, but a good counsellor can help you process your feeling, and help you to move on.

It might be worth getting in touch with your local MS Society branch, as there may be groups that meet in your area. If you fancy learning something with your days, I recommend the futurelearn.com website, They have tons of online courses on all kinds of topics, and delivered by different universities (I’m currently doing one from the Met Office on how to understand the weather). And something to consider & put on the back burner is applying to the charity Flying Scholarships for Disabled People. They do exactly what the name suggests - give scholarships for disabled people to learn to fly. Don’t dismiss it because you’ve never wanted to fly or think you couldn’t do it. Generally, when people apply it’s because they’ve lost confidence since becoming disabled & feel like their life is over. I was lucky enough to do it a couple years ago. It was an incredible experience, and really built my confidence. Message me if you (or amyone else) wants to know more. http://www.fsdp.co.uk/

Dan

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