My general health is good. I feel well and I’m not in pain. Sometimes I can’t quite believe this is happening to me. It’s ten years since I was referred to a neurologist and nine since my diagnosis, although I had symptoms going back a number of years, unexplained falls, clumsiness, tired all the time, and a few months of double vision thirteen years ago.
Nine years ago I could walk a reasonable distance at a reasonable speed, I could get up and down stairs, swim, drive, live independently. Now I’ve got dropped foot, I can’t lift my legs from the hip and struggle to get around at home on crutches, it’s wheelchair everywhere else. I can’t use cutlery, can’t make a meal, can’t carry anything, frequently drop things, basically I’m unable to live independently. I suffer from urge incontinence, even though I self catheterise, but we’re trying different meds to try to sort that.
Theres just me and my husband, we’ve no family and he’s nineteen years older than me and is my sole carer. He does this with good humour and without complaint, and I feel lucky and blessed. 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! One friend pointed out that it’s keeping him fit, so I’m doing him a favour!
He’s likely to need a knee replacement soon, and I worry how we’ll cope, in fact rather selfishly I worry how I’ll cope alone at home while he’s in hospital, and how, or even if, I’ll be able to visit him in hospital. How will we manage when he’s discharged.
Also, generally, as we age, and as I continue to deteriorate, I fear soon I won’t be able to walk at all, how will we manage. I’m 59 years old and he will soon be 78, although in his head he’s a lot younger! In my head I can turn cartwheels! But in reality I can’t even get up and down off the floor, never mind anything else.
I remain generally positive and upbeat. I go to a gym three times a week where I do chair based exercises, and with the assistance of instructors use some of the gym equipment. I pay for physio once a fortnight as this is not available on the NHS.
We’ve been refused any help with adapting our bungalow, so we’ve just paid thousands to have the front door altered and ramp constructed. We are hoping to have saved enough money by the new year to convert the bathroom to a wet room. The shower tray is fairly shallow, I’m managing at the moment, but at the rate I’m deteriorating, that will change sooner rather than later.
To those of you who’ve got to the end of this post, sorry for its length and thank you for reading it. I just felt the need to get it off my chest. I’m not going to ask anyone to predict how soon I will be unable to walk etc. I don’t think I want to know!