I read posts from this thread regularly about our symptoms. I’ve always felt that fatigue is one of our most common restrictions. Today the wall hit me hard. I slept in until 10.30 then found I was incapable of doing the most basic tasks. We know the phrase power nap; well I had to have a power sit down.
I’ve had 23 years since diagnosis and now I’m getting to know the real problems with the beast. How did I manage to work for all that time? From the very day I qualified as a school teacher I have been dogged by this illness. Oh hang on, we are all a bit determined. I used to think courage was all bout climbing Snowdon on January 3rd in a howling gale. Now I know what true courage is. And we all show it. It’s about admitting to our illness and then getting on with life.
Steve, I’m 100% with you. I was a contractor working in financial services sector - How the hell did I get out of bed and get on a train at 6.30 in the morning, travel to Canary Wharf, work for 8 hours, get home, freshen up, eat and drive to another town to teach a class at the gym??! There are days now that I don’t even brush my teeth - that isn’t and won’t be a regular thing but I have been overdoing things a little and just a little extra fatigue can mess up even the best laid plans.
Sonia, for two and a half years I emerged out of my house at 5.30 every morning and drove the 38 miles from Tunbridge Wells to the Elephant and Castle. Most days I’d finish work at 6 in the evening. I just loved my job. I decided to get a more local job when very early on a Sunday morning, I was so awake I had to buy a newspaper. I found the delivery van somewhere by Sevenoaks.
Steve I was diagnosed about twenty three years ago. What a different time. I was a roof tiller hard physical work and I thought I was as fit as a fiddle with a small health problem. Yeah it was so small a problem that it wrecked me and my body. But I have enjoyed it, that may sound strange but the alternatives are worse I try not to wallow in depression. I love life I am sure without MS I would have enjoyed life differently.
Have a good weekend even if it is going to be a wet one.
Hi Steve 24 years for me since diagnosis.i too worked full time 8 am to 6pm, bought 2 kids up alone (one cos of divorce,one when i was widowed) i used to work long hours come home and do all the housework,shopping and even go out until 3am clubbing ,when i got chance.
i also loved gardening and spent all day saturday or sunday cutting large privets,mowing a very large lawn…i was never ever still,i loved it all the busier the better for me.i cant believe how i am now,it takes me all my time just to have a shower and get dressed,some days i cant and the days i do manage it it leaves me exhausted for the rest of the day.
Gosh folks. I hope you don’t mind me adding my little bit.
Like you all, I was up at 6.30 in the morning (reluctantly. I’m NOT a morning person) to be at Eastbourne hospital to start my day as a Mortician. Finished at 5-ish, home to control two school aged teenagers, dinner to prepare/cook and all the usual domesticity. In more recent years now living in Ireland, like you Mrsj, an acre of garden filled me with delight. It was one of the reasons we bought this cottage style bungalow. Now I worry about it’s upkeep and if I will be able to afford to pay for help with it.I was up and down ladders decorating and improving indoors, digging and doing physical hard graft outdoors. In the middle of this, I discovered foreign travel. I’d never been abroad until the grand old age of 49!!!
Boy did I make up for lost time. My amazing husband doesn’t have the interest in travel like I do, nor can he cope with the sun, whereas I loved to spend as much time in it as possible, tanned, happy and healthy. He was happy to let me travel solo, a couple of weeks at a time and for six years I did so, visiting half of Europe! It was on my return from 4 weeks in the Canary Islands eighteen months ago, that I was diagnosed with the thunderbolt. RRMS. Then six months ago, it felt like another as the Neuro decided it is actually PPMS. It was like being diagnosed all over again.
In eighteen months I have gone from crutch, rollator to wheelchair. Having once been proud of my shape for a young looking 55 year old, I have now put weight on and while not a large lady by any means, I have gone up a size. Don’t like. I can no longer put my socks on without an aid, struggle raising my right arm to try to hold a hair dryer aloft. No longer able to feel my right foot, I can’t drive anymore and rely on hubby as a chauffeur, goodbye impromptu decisions to go somewhere.
You are right Don, the alternatives are worse and I tell myself that every day. I am warm here in front of an open fire, looking at the stunning scenery that surrounds our house and wondering how far down the mountain the snow will come later. Now I’d better make sandwiches for lunch. Have a good weekend all.
Well what a lot of wonderful interesting posts. Like all above I have always been active. BEEN. Now I am getting more and more limited. I always have thought MS ‘it’ wouldn’t get me. But it has. Don. I k ow you suffer from depression as do I. You always say your tablet is the most important one. I totally agree. Without that one tablet I am struggling unbelievably. But. How do you stay soooooo buoyant. ? I really want to know. Listening to the radio the question was to Dr’s. Which illness frightens you the most? Several answers. One was from a Dr who had suffered both cancer and depression. For her the depression was the worst disease. Much worse than the cancer. She said she could battle the cancer but the depression was shutting her down, unable to fight it. Interesting. Everyone is different I know. Please Don interested to hear yr views on this. Anne x
Hi, yeh, what a lot of really interesting stories.
Just wondering, has anyone who didnt know you before this monsterous sausage thing happened, ever asked what you did as a job?
I find this question very rarely gets asked just out of curiosity. And I like it when that happens, because it feels like people think we were always like we are now…not very productive, slow up top, dependent on others etc.
My former life was very different too.
I was 45 before my problems with mobility began.
Prior to that I worked full time as a senior assistant in tourism…oh it was a fascinating job…brought up two daughters, looked after a doggy, entertained a husband, (!) fed them all, cleaned up after them, like you do, and I ran slimming clubs to boot!
My life at 40 was incredible! I had lost almost 7 stones in weight, had a boob lift, passed my driving test and bought my own car, got promoted at my day job, ran slimming clubs, and was as fit as a flea!
5 years later, it all came crashing down around my head!
It’s interesting reading everyone’s journey to where we are now, all aboard the good ship ms!
I started with a numb patch on one leg back in the 80’s finally diagnosed with progressive ms, but I consider myself one of the lucky ones (?) in the respect that the progress has been a slow gradual thing, rather than changing overnight.
I use a powerchair and am reliant on others for going anywhere, really hate that my independence has been gradually gnawed away, but as Don says, it has to be the better option, and that’s me really …in a nutshell…down but not out.
’ I’ve just been a mum all my life it was my life I’ve bought 7 children up and absolutely loved it then I decided to become a classroom assistant I’d always volunteered in school reading with the children going on school trips and then working in a pre school sadly Ben was unable to cope with his aspergers and tourettes he had a breakdown and was out of school for a while eventually being sent to a special school out of area. By then my own health started to decline and now i rely on carers and my life is so different to how I imagined. I don’t have any regrets my children were the most important and I’m glad that I was there for them. I still have a big part to play in their lives I go all over the place in my power chair and my twin granddaughters are a big part of my life. I suppose my adventures still go on although it’s so different to what I imagined but me and Frazer are having the time of our lives so no regrets. Michelle xx send from my mobile
So many posts to read and ‘like’, funny how a just little reminder about what our lives used to be, sets us all off about the changes and loss MS has caused. But funny how it shows what we’ve all been very capable of handling!Makes me think of a little saying I’ve heard and no, I’m not very religious but God never gives you more than you’re capable of dealing with - it seems generally to be quite true tho
Thank you Sonia, I believe that too. I felt a bit rubbish recently like I’m no good and I haven’t achieved anything but I’m okay I’ve still got my family and Lee is good to me it’s just so sad I feel guilty for altering his life but i suppose it’s about your outlook and i can still achieve a lot even in a wheelchair. Michelle xx
Michelle, Please don’t say ‘just a Mum’. Hardest and most important job you’ll ever do. Caring and bringing g up the next generation. A marvellous job. And about the only thing nowadays you don’t have to have qualifications or a licence to do. You have done a wonderful thing in life. Never forget that or put yourself down. YOU ARE A MOTHER not 'just’a mother. Off soapbox now!!! Anne x
And now you`re a grandma Michele! I imagine your babysitting skills will be much in demand.
There was a survey done a couple of years back, about just how much childcare grandparents provide, which if was charged for, would be an astronomical amount!
Done my bit and still doing it, but less as they grow up.