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That seems to be it!

Hi everyone, hope life is being kind today.

Unfortunately for me its not. I had a meeting with a member of the brain and spasticity team yesterday. I have never seen the same person on appointments. Initially I saw the main Consultant and then his Registrar and yesterday another one of his team. It was not a positive experience. Basically as I am secondary progressive it was “well there is nothing further that can be done for you so the best you can do is live with it and make the best of trying to keep it under control”. I knew this was going to happen eventually (I’ve had 15 fair years since DX) but the last year has been very active and aggressive. I am no longer able to work, life and everything has been turned upside down and now I’m being cut adrift. Seeing my MS nurse at the end of the month which will be an interesting meeting. Spent most of last night awake and thinking about what I was told. At one point I thought “oh well tomorrow’s another day and I will feel more optimistic” but that hasn’t happened. So is this my life now, housebound, unable to move more than a couple of feet (only with aids) and have to have my OH with me when I go out in my wheelchair for appointments (it’s taking it’s toll on my relationship as well). I’ve now lost all confidence and any ability to see anything good in absolutely anything. Right now life sucks and all I can see is negativity. My Neurologist has even taken a back seat!

Sorry for the rant, can’t even cry cause I’m so uptight about the whole situation, I might as well just retire to bed until the end arrives, at least that’ll be warm and comfortable. Linda x

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Hi Linda,

((((((hugs))))))

We are at pretty much the same stage. I hate this “There’s nothing to give you” except loads of drugs to treat the spasticity for example. I was feeling quite low, thought my anti-depressants needed upping. I’ve just started a Vit B complex (slow release) I’m now feeling mentally like I’ve taken speed or something! my brain fog has lifted. I still can’t walk any better but hey ho! I’ll grab any smidgen of feeling better.

I hope that today is a little brighter for you

Sara xx

((((Hugs))))) to both of you. Can’t begin to imagine how you both feel so best thing is just to offer an ear for listening and sending hugs and mega love your way.

Glynnis xx

hi

you are bound to feel low so soon after being told that you are secondary progressive.

so take your time coming to terms with it.

then contact any good girl friends. some will just fade away - their opinions - their rights,

but a couple will enjoy meeting you for a coffee.

such a small outing but it means so much.

you are still the person you have always been, just dealing with such a lot of tough times,

that means you are strong. you will survive this.

it’s the start of a new chapter in your life story.

please don’t think of it as the end.

carole x

Hey Folks!

I’m SPMS too and have no mobility or balance anymore, and the weakness & tremor down my right-hand side means I can no longer write, drive or even speak properly …so communication is tough !!

I don’t have an other half. I live alone and all friends have disappeared over the course of my illness. Thank goodness I have an extremely caring & patient family. Don’t know how I’d cope without them.

My Neuro has pretty much written me off since I was considered ‘progressive’ …so it feels very much like the medical profession have abandoned me.

There are a few things that keep me going: Nephews & Niece, Brothers & Sister, Family, and I’m determined to find something one day that improves or even cures my MS. And when that day comes, I can’t wait to go into my Neuro and the rest of the medical bods that have written me off and stick two fingers up at them

(Not a helpful post, but by 'eck it feels good to see it in writing!!)

Dom

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Hi Linda

I can relate to so much of what you said, and I know how horrible it is. Not long after I was diagnosed, I found myself pretty much housebound, unable to walk, crawling to the toilet, in a pit of despair & depression, thinking I had no future, and waiting for…, well, I don’t know what I was waiting for.

Slowly, with time, I emerged from that dark night of the soul. Moving to a ground floor flat really helped, where I could use my wheelchair. I got a support plan set up with social services, which meant I could employ a friend to do things like shopping & cleaning, or take me out. So it could be worth getting in touch with your social services to see what they can do to support you, as that would help take the pressure off your other half. Speak to your GP too, as getting some counselling or antidepressants could give you some much needed emotional support. And something I’ve done on occasions is just to get a pillow or cushion, and just have a good scream to get the frustration out (doing it into the pillow means the neighbours won’t get too startled!).

Something I heard about that I found very helpful was to do a review of each day or week, and write down what things energised you, or made you smile, or nurtured your soul somehow, or where you most felt like you were really being your true self. They could be things that happened to you, or that you did.

And then think about the things that had the opposite effect - that de-energised you, or left you feeling empty or frustrated, or where you weren’t really being yourself.

Chances are, the more you do that you’ll probably find similar things crop up on both sides. So for example, I realised that writing always felt fulfilling, whether I was journaling or writing more creatively.And anything to do with nature always soothed my soul. And on the other side, i realised watching telly all evening left me feeling empty, bored & frustrated. So now i know that, if I have a spare evening, then it will be far better for me to journal, or simply gaze out the window at the birds & clouds, than it be to just watch telly. It’s really important that get into the habit of regularly doing things that bring you a tiny bit of life. It will help you’re emotional well-being, and also bring a bit more life to your relationship.

And, of course, come on here as much as you need to. We’re all for you : )

Dan

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Hi everyone, thanks for your support and hugs - it means a lot. Feeling slightly more upbeat today (it might not last). When the lady said to me on Monday “what is it you would expect us to do” I just thought if you could find a miracle cure within the next five minutes, that would be good. I know it’s probably never going to happen in my lifetime, but what (I thought) a stupid thing to ask. She said we could look at more medication - why? I take the maximum dose of Baclofen which does what it’s supposed to do but it would be lovely if they could give medication that would make movement better, but I know that’s never going to happen. I know we on this site are all going through the MS world mill and it’s good to know I’m not alone. Sara I do feel for you, being in the same position. Whoever thought we would end up like this! Like I’ve said thanks for your comments and support. Linda x

I don’t really know what to say Linda. Just that I have read what you’ve written and I’m sorry that things are so bad for you.

Thinking of you and wishing you happier moments in life.

((((((Hugs))))))

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Hi Linda, oh love , I do identify with you on many of the things you have said.

I have spent the last 16 years seeing different neuros, having tests and repeat tests and then was mis-diagnosed for years.

You may already know some of the c####p I`ve had to endure, so I wont bore you with the same details.

Now, what can I offer in the way of advice to you?

Something which I would urge anyone to do, is to use the social services and direct payments. Like you, my hubby was my sole carer for years and yes, it did put a strain on our relationship as man and wife. That has never got back to where it should be. I let him take charge instead of forcing the issue of us getting help in.

After a few years, I went behind his back and got the help we BOTH needed.

Now I have 3 carers as well as him…to get me up, showered etc. Then they take me out for lunch, retail therapy, medical appointments or whatever I want to do. They also do 2 sleepovers a week. I dont have to contribute to the cost, as we were means tested.

Life is still difficult, but better than it would be without direct payments.

You can ask for an assessment and see goes. Life can improve for you hunny, but you gotta do the asking first.

much ove, Pollyxxx

ps hubby really appreciates the help now!

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Hi Linda

Have you ever seen a physio? You can get ones who specialise in neurological conditions, and they can help you make the most of the strength you have. Whenever I see one, things like my balance get better. So you could ask to be referred to one, as it may improves things, even if it’s only a little bit.

Dan

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