Feel like my life is over

Everyday living
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reading messages from people who have coped and moved forward isn’t helping at all.

So what are we supposed to do then, just stay negative…?

Of course having MS is hard is that better? I lost a great job, my life everything changed, i have had dark times so dark i nearly didnt bother to come out the other side, BUT with support from others I worked through it all. With support from positive people I made it to 11 years. If i had gone on groups and people had fed me my depression, and told me what is the point, i would not be here now.

There is life with MS, as there is life with lots of other diseases, its finding the middle ground and learning to live with it, and its restrictions. I never ask more of it, then it can give me, so i dont set myself up for a fall.

Jeez i am in pain everyday even now typing this, my body is burning, tingling, fizzing, vibrating and i havent even gotten out of bed yet.

Yes MS is hard, it has huge challenges, but we can get through it if we want too. It takes time and patience to deal with it. MS is not a death sentence, only by our own hands. Its a challenge yes jeez hell a real challenge but if i had given up when i wanted too when i felt at my darkess i would have missed so many things, a lot has happened to me, seen wonderful things, and new sunsets, and sunrises, met so many lovely people, been all over the world without leaving my chair, chat to people as far away as aussie, USA, thailand, kenya i have friends everywhere now, because we all support each other.

Yeh MS STINKS, MS IS HARD, MS SUCKS, so on and so forth, WHY ME? WHY NOT ME? I have got it, i have now come to terms with my losses, and i get on with it and if i can help support someone else through a dark time I will, without feeling guilty of making anyone feel worse.

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Hi Dawn, today I am up and about (well I will be soon), only from adjusting slowly did I know yesterday that I needed to stay in bed, read books, sleep etc. It was not my plan years ago to be doing this but I have adjusted and created quality resting time now rather than it feel like a sentence (sorry can’t spell today). As the postman says most days ‘Alright Pam’ to which I reply ‘Still here’. Everything I knew has changed, I don’t work anymore, my relationships with people have changed, however I have learnt to accept quality in a different way. Not much use when you feel tired and wonder why the heck everything has happened so stay strong if you can, there are times when days are bad, but there will be times when days are good. Each day is different for me, I wake up and try to get my feet working and then tell it all to p— off, drink my endless tea take my painkillers and all of a sudden the world is a better place.

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At one end are pwms who are positive, optimistic and making the best of a bad job. At the other end are pwms who are finding things very difficult.

The good folk in the former group will tell those in the other group that they ‘can get through it’ or they will explain to them about the stages of grieving, acceptance etc. or they will proclaim how well they have adapted to their difficulties.

Those who are struggling may be encouraged to go on a course, get out more, seek new friends etc.

The danger is that the well-meaning pwms end up making those who are struggling feel inadequate and inferior.

We should all respect and validate everyone’s individual response to their m.s. The guy who is in the depths of despair isn’t there from choice, isn’t there because he chooses not to do anything about it. Can we help this guy without adding to his despair?

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Empty glass again Krakowian I see. Nobody is urging Dawn to get on with it, they are just relating their experiences in the hope that maybe 1 of their suggestions might just give Dawn a glimmer of hope to carry on. Are we to say just curl up & die!!! That would apply to a lot of us! Now that’s not helpful, at all. Nobody is ‘happy’ with their situation, MS is an absolute a******e, its vile, unforgiving & down right evil. But the alternative is? Give in to all it’s destruction? what about the days that are tolerable? are these to be given up to it as well? Life is shit with this illness, no ifs or buts about it, but Gawd, it doesn’t have to be so black all the time. I have resisted to reply till now, cos actually I do quite like you, believe it or not, Krakowian!!! Nobody is meaning anything else but support for this poor lady, I bet my last quid we’ve all been there & unfortunately will no doubt have many moments of it again, sometimes just knowing someone has got your back, albeit virtually, is comforting, all in the same boat, can’t be happy clappy all the time can we!!! x

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I’m gobsmacked !

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In a good way I hope Dawn! See, loads of people looking after you, your certainly not alone xx

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What a FAB thread, starting with the familiar but horrid (horrid, how very polite), feelings of loss, grief and bleedin’ hoplessness that Dawn is suffering.

Dawn, MS affects some of the people all of the time, some of the people all of the time. The MS Monster is`a bully, but it can never affect all of the people all of the time.

None of us are fools, but we have learned the patience of Jobe trying to get our head around this rare disease. To compare is futile but others’ stories are inspiring and try to help lift us from the gloom.

Feeling isolated, alone and unsupported takes us down dark pathways & then we spy a spark of light. Driving licence revoked? - There is public transport (1 every 3 hrs in my rural area). My independence is my power chair, I catch a bus to a better network of buses. Trains will be another challenge when I’m ready.

The MS Society is a Fab place to get involved and meet others. My local group is too difficult to get to, but I have many friends in it who text or phone.

Depression often accompanies MS and telling ourselves to ‘get it together’ is akin to telling a blind person to look where they’re going.

I wish you well Dawn, a helluva lot to deal with, though this group will do all they can to lift your spirits. xx

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And I agree with everybody.

A) MS is sh*t

B) sometimes some positive thinking is a good thing

C) at times only a realistic boll*cks is an appropriate response to any positivity

D) I love the positivity shown by people who find small projects helpful to their mood and entertainment

E) I frequently feel like Krakowian in that other people’s positivity can make me feel like crap.

Sue

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In my view there is no half full or half empty, there is only the glass. Trying to stand back so we can see the glass clearly, without our minds blinking our view is extremely difficult. If we see the glass through a telescope, it seem to be huge, turn the telescope around, it seems tiny. Unless we can see it as it actually is, we can not even start to evaluate how full or empty it is. Only then can we start the process of saving what ever is left inside.

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Is it like this?

The New Reno II Powerchair

Looks practical - it would fit in our car.

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I haven’t posted on the forum for about a week now, ive been staying away because I have been feeling exactly the same as you Dawn. By default I am normally a positive glass-half-full kinda girl, but even I have been struggling to see a plus side to anything just recently, and when I’m feeling negative I tend to avoid interacting with people and wait (hoping!) till it passes. But reading your post and all the replies reminds me that I am not ‘alone’. I’m not the only one, many many more people feel the same or even (is that possible?) worst.

Though Krakowian’s response is negative on this occasion I find it quite valid, in that people generally (with MS or not) tend to take the ‘hold your head up and make the best of it’ approach, which can be helpful and is definitely well-intended, but I also think it is OK to allow your/ourselves some time to grieve the loss of who we were.

That’s where I’m at right now: I WILL buck up and start to adapt but right now I am sad. I’m angry and sad and frustrated that this time last year I was fit and strong-ish(!) and going to the gym and yet just 10 months later I am already quite disabled. Virtually housebound and needing a wheelchair to go any distance more than 10 or 12 feet. Sure I’ve had lots of help from various services and I’m lucky to have a supportive partner and family, but none of them can give me back who I was.

And that hurts.

I don’t have any words of wisdom yet as I am still very much where you are at, but I am hoping this feeling will lift, and certainly with the help and support of people on this forum I feel encouraged that I will get to a better place and start learning to live my new life in a way that I can still be happy. I really hope you can too. Just give yourself time to let go of the old you (easier to say than do, I know) and learn to love the new you.

I for one have taken several mental notes-to-self from this thread -particularly from CrazyChick- and when I’m ready will start trying to put some of them into practice.

Hang in there, you can do this.

WE can do this.

Big love,

~ Soo. xx

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spot on Sue

Mick

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Krakowian, I’m sorry that you’re finding this thread hard, and I’m sorry for my contribution to that. I want to clarify what ‘acceptance’ means. Or rather, what it does not mean. It doesn’t mean being happy about having MS. I’m certainly not happy that I can’t walk, get painful leg spasms lots if the time, often don’t go out because I’m too tired or don’t go to friend’s houses because they’re not wheelchair accessible. And it doesn’t mean never getting depressed or frustrated. I do, regularly.

I think I’ve had a similar experience to Crazy Chick. At my absolute lowest, after I’d gone from playing football every week to being wheelchair dependent in just 18 months after diagnosis at the age of 26, I came so close to ending it. I didn’t want to carry on living as miserable as I was, but I didn’t know how. It took years, and a lot of tears, to come to a place where I wasn’t always looking back at what I’d lost, but found I started to look ahead to anything that might give life some meaning & pleasure, despite the difficulties. I hope & pray we can all do that.

Dan

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E. I frequently feel like Krakowian in that other people’s positivity can make me feel like crap.

Hi sue, i tell you what makes me feel like crap, is facebook, when i go on there and all my family and friends are showing off all their photos of their latest holidays…i cant go on holiday or fly, and now well that makes me feel like crap, and depresses the hell out of me, not what is written on this forum. xxx

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Eight years in I’ve had my ups and downs with this illness, today is a down day. I had a fall at work yesterday, something I have been dreading and felt humiliatated. Stupid leg tripped over something and splat! The machine I was carrying fell to the floor as well result 1 broken machine which costs an arm and leg to repair.

Today im at home as I have 2 days off but I am covered in bruises and very sore. Not to mention my confidence has gone again.

I do know by Friday I will hold my head high and go into work again bruised but I will carry on. The one consolation I have is that I managed to get off the floor by myself which I regard as an achievment.

Ms warrior Mags xx

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I have another suggestion which was prompted by a visit to my brother yesterday. He has various health problems (not including MS) but can no longer get out and about the way he once did. He is pretty much isolated but tries to find ways of alleviating the boredom.

Anyhow - he had the opportunity to buy a second hand Oculus Rift and I had a go with it yesterday. It was far more engaging than I though possible and this ‘gadget’ is at the very beginning of development really - it can only get better and better. With it (thanks to Google earth and it’s free program) he can go literally anywhere in the world that he wants to. He can now revisit places he loved but can no longer get to in real life. Obviously it’s not quite the same as being outdoors - but the scenery is exactly as it is. There are also plenty of free ‘apps’ that you can download and mess about with and ‘games’ to purchase. It’s only a matter of time before you can virtually meet up with other people with the gadget - from my brief experience it will be a very freeing activity. Although the Rift is usually seen being used by “able bodied” people - it is perfectly possible to use it from the comfort of a chair which is what my brother does.

It will never replace real life (and who would want it to) but if you want to forget that you are limited then see if you can have a go on one at some point. They will only come down in price as they develop - i reckon they’ll be the next ‘big’ thing!

Juls

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That looks amazing. The main website shows mostly games (which is I imagine what a lot of people would get it for) but I can really see the potential of it.

Sue

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Thank you so much for this. The small rational part of my brain is saying hang in there you can do it and I just really hope I can. Cried on my ms nurse on Wednesday, managed not to on my physio yesterday. Crying now as I read all this support.

Well hang on together

Dawn xx

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We will Dawn, all together, take care of yourself Tracey xx

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Absolutely we will

This is a great place to come for support - and just to feel normal…ish!

There’s lots of brilliant people like Tracey (been an absolute rock to me over the last few days! [thanx Trace, mwaaah!:-*]) and you can talk about pretty much anything, no filters here :smiley:

Big hugs xxxxx

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