It’s 12 years this month since I was diagnosed. In 12 years I’ve seen four neurologists, all of whom have trotted out the word mild. I took that to mean there’d be little or no change for a long time. It must also be about 12 years since George Good predicted stem cell treatment would be available in 5 years. In 12 years the deterioration has been relentless. All four have also trotted out the line, “there’s no cure and no treatment “
The NHS have provided crutches, bed handle and wheelchair voucher. I’ve had no help with adaptations, so we have no savings left. In these days of cutbacks Social Services have repeatedly refused to assess me. My husband is my sole carer, we have no family. He’s struggling too.
As of this weekend I can’t walk, feed myself, transfer unaided. We’re exhausted, I wonder if life is worth living.What did we do to deserve this?
My new year’s resolution had been not to come on this site to moan but I had to talk to someone.
I’m so sorry you are struggling so much, my husband was diagnosed with ppms in 1993 , and is in a similar situation to you now, it is very difficult, can you not contact social services to get some carers to help , I have carers for my husband and my 92 year old mum who I also care for, but it is still very hard for all of us because they are only here for an hour in the morning and toileting lunchtime. As for adaptations surely the council can help if you have no savings left, I do hope you can get some help I really feel for you both.
I am sorry things are so difficult for you both, and wish some magic potion would appear that actually helped, so I do understand and sympathise.
If you have an MS nurse, could they not get in touch with social services on your behalf, or even your GP, surely then they would have to access you, and offer some sort of solution to help? I appreciate all the cut backs, but to not even access you is diabolical and so unfair, MS is hard enough to deal with, let alone society putting hurdles in the way.
I wish I could help, but please get in touch with someone and let them know just how bad things are for you both. Take care, wishing you all the best.
There’s a good few of us that could really do with some very good luck. It’s exhausting sometimes. I try to avoid moaning too but can’t always avoid it. Sending positive thought hugs
Aww Flower pot it makes me feel so sad reading your message , you must never feel guilty for coming on here and having a moan . We all get overwhelmed and need to have a moan , you can’t be positive all of the time . The biggest thing I felt was loneliness and yet I’m surrounded by family and have friends . I felt helpless at times and guilty for being a burden and real grief at what had happend to me. This forum is a place where we can feel ourselves and know that others understand us . Take care I hope that you feel better soon. Michelle and Frazer xx
No one ever thinks you are moaning. Talking about how we feel is what the Forum is for. And if you’re feeling this bad, then sharing that is all part of it.
You have had a really rough journey over the last few years. And as for a neurologist suggesting that your MS or your symptoms are ‘mild’, it must make you feel like asking if they fancy swapping bodies for a while, then describe it as mild. Bloody cheek.
I’m so sorry that things are so hard for you. You’ve borne a lot of your MS trials and tribulations uncomplainingly. Sometimes we have to allow ourselves time to have a bit of negative thinking and a healthy dollop of ‘why me?’ and ‘it’s not fair’. We wouldn’t be human without that.
It might be worth trying again to get Social Services to assess you. If necessary, write to the Director of your councils’ Social Services department and ask for help in getting an assessment. This won’t automatically mean you qualify for caring help, but might at least get you assessed.
I do hope things improve for you and your husband. At least sufficiently that you feel less abandoned by the world.
Hi Flowerpot, Money is tight, for the individual and social services, one thing is clear though, you have been to see four, me one, neurologists, you could, if you wanted, see more, and they all, like mine, will tell the truth, there is no cure, no matter how much we hope, stem cell is a rip off, it costs a fortune and elevates the symptom for a small time, then back comes the MS, it does not cure, a few over the years have from this site spent thousands, they have less money and still have MS today, 21 years ago I was informed I had progressive MS, that there was no cure, and to enjoy my life as much as possible, my hard earned money was, is, being spent to enjoy whatever life is left, life sucks, we just have to grin and bare it, Brian
That’s a brave message you’ve posted. We try to be positive but sometimes we get submerged in our daily efforts to maintain some form of life whilst the spectre of self-doubt buzzes away life a wasp in our ear.
Thanks everyone, I sometimes feel so completely alone. I know there’s always someone worse off, it doesn’t necessarily make me feel any better, but usually helps me keep it in perspective. I don’t feel so low today, and I’m trying to get some support. Another battle! The MS nurse told me I’d to ring Social Services myself. Repeated calls get me a recorded message telling me there is a high volume of calls and to try later. I rang the community OT who visited last month following a referral after a fall. She tells me I’ve been discharged and need a new referral! What was the point in leaving her number and telling me I could ring if I needed something? So in the spirit of trying to help myself, I’m arranging for a chair and bed Specialist to visit to discuss riser recliner chairs and adjustable beds. My private neuro Specialist physio is calling this afternoon. I feel very much abandoned by the NHS, but I know I’m not alone in that. Eve xx