Struggling

Primary progressive MS
1

It’s nearly twelve years since I was diagnosed, though I had symptoms going back longer than that, but my GP kept insisting there was nothing wrong. Why don’t medics at least give us credit for knowing our own bodies? Anyway, I’ve seen four different neurologists none of whom had anything to offer me. I don’t even have one at the moment., so don’t even get sn Annual review. Each one has trotted out the assurance that my MS is “mild”. Well, it doesn’t feel mild to me, I appreciate that it might not be as aggressive as some of you endure, but I’m really struggling now. I’ve not been able to live independently for about nine years now. I’ve deteriorated steadily since diagnosis, and it shows no sign of slowing down or stopping, and I’ve worsened markedly in the last few weeks. I can’t do much, but I’m fortunate in that I’m not in pain, I feel well and my general health is good. I’m 61 and retired. Again I’m lucky in that I worked for long enough and contributed enough to have a decent pension, so I’m not poor (or wealthy) and am not dependent on benefits to survive.

i can’t walk more than a few steps with crutches or frame, and it takes me ages to do those few steps. I’ve got restricted movement in my arms, I need help in and out of chairs/bed/car, I need help dressing/undressing, I can’t use cutlery, lift a kettle or make a meal. I can’t manage alone at home. I suffer urge incontinence, I had Botox earlier this year which truly transformed my life, but it’s worn off now. I was assured it would be done again before it got this bad, but this hasn’t happened, I’m on the waiting list, but the first time I had it done I was waiting on a list for 24 weeks. So I’m back to soggy pads, damp underwear, and worrying about accessible toilets, whether I’m going to leave a damp patch wherever I sit, and do I smell?

I’m usually fairly upbeat, stoical, and positive and I try really hard, but is it worth the effort? I usually take the view that there’s always someone worse off, which doesn’t make me feel any better, but usually helps me keep things in perspective. What did I do to deserve this? I’m not a saint, but I’m not a bad person.

I’m sorry for wallowing in self pity, and to any of you who gets to the end of this post thanks for listening.

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Aww Sweetheart, I feel for you , I don’t know what to say, just that I understand , it’s awful being left on the scrapheap and from what you’ve said it doesn’t sound mild at all. I’m on a journey myself I don’t have an ms diagnosis but have a significant disability and although I can still do many things I’m slowly getting worse , it’s so scary as I feel I’ve been abandoned and just left to get on with it. I’ve had the Botox too and it’s made a big difference, in fact it was a bit too good I can just about wee again but it’s hard i still use a catheter to empty properly. I hope you get it again soon . I wish I could help more I just wanted you to know that people care and this forum has been such a good support. Love Michelle and Frazer xx

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Flowerpot, you are not wallowing, you are just coming to terms with the lot we have. I have parallel symptoms and it really gets my goat. I’m also comfortably retired. I’m just starting to realise that I rely on help. I’m not ashamed of it. I’ve just flon to Cyprus and back with help. I have good incontinence pads and it makes all the difference.

Steve

1 Like
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Hi Flowerpot

Please don’t think you’re wallowing, you are not, ms can be really challenging, and the people here all understand, and feel your pain. It really can feel like we are left to get on with it, and this is wrong, we need support.

I hope you get Botox again soon, as you say it was so helpful. We should not have to make a nuisance of ourselves to get treatment, but if that is the only way, perhaps it’s worth a try.

I wish I had a magic wand to help you, but wanted you to know we all understand (((hugs)))

Pam x

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Thank you. I’ve got a date for Botox. I’ve got to wait until 9th January. It’s later than I’d been led to believe it would happen, but earlier than I feared it might be. Fingers crossed it doesn’t get cancelled. I rang the urologists secretary and she gave me a number for the waiting list office. I was nice and polite and they gave me what they say is the first available date.

I’m not so down today. I’ve been to the gym and managed a short walk, with an instructor following with my wheelchair ready for when I could go no further. It took a while, but I did it.

Eve xxxx

2 Likes
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Best advice i had from hospital was to ring and get an appointment for botox before you actually need it because the waiting lists are so long.Sorry you’ve been struggling .I swear by botox my bladder and bowels are the bane of my life.You are certainly not wallowing in self pity,this bloody disease is terrible. I know how you feel with wet pads and frightened to stand up in case you leave a wet patch.Like you i dont think i deserve this illness im not a saint but i haven’t been bad either,but then why not us.I try to be a cup half full type of person but its not always that easy.please take care.xx

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Thank you. I did actually ring before the Botox wore off which was what the urologist advised. The trouble is when I rang I was told that they’d changed the system and I could no longer go straight on the list, I had to have a clinic appointment first. I waited eight weeks for that! By which time I was almost as bad as before. I certainly will be by January. It’s going to be another soggy Christmas!

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Wait wait wait thats all we seem to do,at least we get an instant reply on this forum from someone who knows how we feel…joxx