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Struggling

Just as I get used to how bad it is, it gets worse. The last few days have been awful. I can’t do much at all now, and struggle with the most basic tasks, getting in and out of bed, dressing and feeding myself to name just a few.I’ve not been able to drive, live independently, get around unaided for some time now. It’s nine years since I was diagnosed, and three different neurologists have trotted out the word “mild”. One even predicted it would be twenty years before I needed a wheelchair. He was way off the mark with that one, I bought my first eight years ago, and have used one pretty much all the time outside of home for seven years, I’m now resorting to it more and more at home. At this rate it won’t be long before I’m confined to the blasted thing. I could go on and on about what I can no longer do, but I’m sure you get the idea.

I’m not looking for advice or sympathy, I just wanted to voice my feelings.

When I was first diagnosed with mild ms, I wasn’t too alarmed, surely that meant many years of little or possibly even no change, and I rather naively believed that there would be help and support. I was way off the mark there too.

Time to stop feeling sorry for myself I think!

I am pretty much the same as you, when i go to see the neuro.i see him every 2 years, he thinks i am doing ok,to say i have had it 23 years…when i tell him i am in bed most of the time, he looks at me as if i am making it up,i am due to see him in a few weeks,and cant be botherd really,so might even cancel…

Hello.

It can be so depressing when you think of how you were to how you are now. I’m sitting here typing this with my one good hand wondering what I would be like without the beast of MS. In my previous life I achieved a diploma on the piano, taught it for many years and rolled a grade 8 cello into the bargain. All that music and all those hours of practice to end up stuck on the sofa, facing a future of inertia and ineptitude.

Then there was the cycling and mountain climbing. Oh, and the 40 lengths a day swimming.

Yet we still put on the brave face. There may be a thousand and one reasons to consider ourselves lucky or to be thankful for what we have achieved in life. But you’re right. Sometimes we just have to vent our frustration. And it does us good.

Thank you for the post.

Best wishes, Steve.

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You’ve both hit the nail on the head. Thank you.xx

Greetings Flowerpot. Chin up if you can & soldier on. I don’t know the true extent of your situation, but it seems rough. I think some positive days out are required to raise your spirits. A day out shopping or a night out at some event. I used to enjoy cooking. Now I make things in batches for less hassle. Films & hobbies are great escapism for the dark days. Take care out there.

Offering a bit of support, I hate days like that :frowning: but it passes :slight_smile:

Sonia x

You’re allowed to feel sorry for yourself now and again. I’ve been a little down lately I blame the weather and time of year, I tell myself the darker and colder it gets the closer to spring we are. Are you on any Meds either DMDs or symptomatic? You may need something for your low mood (as my GP puts it).

Hope you feel better soon

Jan x

Thank you everyone. I think I’ve picked up a little and am feeling less vulnerable and a bit happier.

I’m fortunate in many ways, I’ve got a loving husband, who’s taken on the role of carer and the extra workload of jobs I can’t do with good humour and mostly without complaint. When I married an older man I expected to look after him in his old age, not have him spend his old age looking after me! Although a friend pointed out that it’s keeping him fit, so maybe I’m doing him a favour, so long as I don’t wear him out!

We are comfortably off, but it’s meant that money earmarked to spend enjoying life is being spent on adapting our home and paying for help. This wasn’t how it was meant to be, but hey ho.

As for meds - I had a course of IV steroids when I was first diagnosed, it didn’t do anything for my symptoms, but it did leave me constipated and unable to sleep for a week or so. I’m now on Amitriptyline and paracetamol. I’m trying Oxybutynin for an over active bladder as well as self catheterising. Solefenacin and Tolterdine having failed to improve that particular problem. Oh and Naproxen for the arthritis developing in my right hip, as if I don’t have enough to contend with. However I’ll never walk well enough or far enough for that to worsen much. Every cloud and all that!I

I try not to dwell on what might have been or my fears for the future, but yes it’s bothered me the last few days.

Thanks for your words of kindness and support. I’m not sure I deserve it though.

Love and luck to you all. xx

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Of course you deserve it! I think even the strongest on here would admit they have “down days”. I think it is OK to have times when it all seems too much. The thing is to recognise how u r feeling. Go with it. But. Only for a day or two. Then pick yourself up and continue the battle that can sometimes be life with Ms. I am feeling particularly down at the moment. I had flu, then a chest infection.I ache all over as if I still have flu.We have had a death in the family too and it is too much. So I have just become a bit hermit like until I feel stronger. Living.sometimes battling with this disease can be very very difficult. It takes yr future, as you saw it, away. Adjusting to a new future is difficult enough when you have chosen it, never mind when it is foisted on you by disease. We are only Human. I think we are all b…y marvelous. We fight, we laugh. We keep going. Even when the chips are down. I am glad you are my friends. Keep warm and safe. Anne X

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Allo flower!

Sorry to hear life is worse but glad that you`re coping as best you can.

Im on betmiga for bladder control. Its better than oxy and has NO side effects. If I am feeling a bit like I could bypass my spc, I pop a tolterodine and it usually works. Makes me feel better when going out if I`ve had a bit more boosting power…if you get me!

Glad you`ve got that great special fella.

I have one like that too. I do chuff all now around the house, `cos I always get in the way or make things worse…like refreshing a vase of flowers…petals down the sink and all over the floor!

About you needing that wheelie more…well so be it if it means you are safer and not so rotten knackered kid!

My life is all sitting in my wheelie, my recliner or lying in bed. My bum gets fed up!

Chin up darlin!

pollxxxx

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Anne sorry to hear you have had the flu,hope you are starting to pick up a bit now,think my little grandaughters got it, shes not well at all,shes normally hyperactive,but this morning hasnt wanted to get out of her bed,i hope i dont get it.

J x

Hello Flowerpot,

Sorry for not replying earlier…im just struggling to keep up with everything, Im so glad that you have a loving husband, they are like gold, My husband is amazing too I really couldn’t cope without him.

I’m on Solefenacin for bladder problems and have a commode at the side of my bed…I keep it covered up with a beautiful throw and a cushion till bed time. Sad isn’t it!

I hope you feel better soon, this is a brilliant forum it always cheers me up

Michelle x