Hello. My life has changed now. I am recently retired on ill health. I know I wasn’t able to cope with work anymore- I kept working for as long as my body let me. I didn’t want to stop but was left with little choice . But I am so bored now. Me and the TV are good friends. I have been going to a Positive Movement exercise class but it is now on hold due to funding. My husband is still working and the days are very long. I am in a wheelchair with spms and cannot drive anymore. I know I am feeling sorry for myself but I don’t know what to do.
I don’t want to be rude, but how is someone who is wheelchair bound supposed to ‘host a regular coffee morning?’
Personally I have a coffee machine that allows me to make myself a cup of coffee. But then I have to sit where the machine is to drink it. If someone visits, I can sit with one person in my kitchen and drink a cup of coffee. But regardless of my local friendship circle (which is very limited) I couldn’t cater more than one person. And that would require my OH to buy biscuits etc as I’m not exactly capable of baking a cake.
Equally, many of us have problems with our hands. So craft is out of the question. My penfriends are all you lot and a few friends who I communicate with electronically or on the phone. Because I can’t write.
Sorry Cashew, I didn’t mean to hijack your post by moaning about what people like us aren’t capable of.
Why not spend more time with us? There are always people hanging about on here, either on the Everyday Living forum; or if you feel you have time and energy as well as experience to share, the newly / un-diagnosed forum can always use some extra help. There are many people who are anticipating an MS diagnosis, or having just received one, who just need help in getting their heads round it. Or assistance in understanding MS, treatments and experiences.
Hi Cashew, after an initial withdrawal from everything or everyone beggared off when I wasn’t very well, I had a long look at what I could do. I had some limitations but managed to find lots of things at the library. My favourite which I would have never thought of years ago because I could never sit still for a minute, is colouring on a Monday. They provide hundreds of drawing/pens/felts/mindfullness books. We have extended the time period to two hours. We are a like-minded group of people who have some or lots of limitations. We have a cup of tea, chat sometimes, laugh quite a bit but mostly colour.
We have all bought colouring equipment for our homes. I suppose my point is that you wouldn’t have dragged me there years ago. A few winters ago I spent a whole winter in the house on my own sometimes till I almost ran out of food. Then decided for my mental health, I had to find something new even if it didn’t interest me. I would get a taxi there if I couldn’t drag my dodgy legs there or even ask someone to pick me up for the first time ever. Since finding the colouring, the people there have introduced me to loads of other lovely things that go on. Again not anything I would have ever chosen previously and my energy and illness levels mostly prevent me from going to other things. But I am out and about and am deeply grateful for it.
The council should provide a list of what’s on locally, groups, meetings, U3A etc or internet if you have access to it. I have found loads of things that are on the sidelines if you know how to look for them. Here there are volunteer drivers who are local, you pay them per mile, there is a library van that drives round the streets if you let them know they will bring 12 books to you. I couldn’t exist without netflix and also exercise classes on the internet that play through my tv. I sit on my arse surrounded by blankets in the worst cold weather, pretending to box following a boxing class. I can only do it for about five minutes but I do it. I allott different parts of the day for different things, eating, tea all day, out even if it is in the shed, potting seeds, reading, internet, netflix. I love IMDB and finding out about films, music, actors etc. Its a big adjustment curve, you need to find your thing!
Thank you. I can’t rent out a room. I have 2 kids at university so I don’t have free space. I do watch Netflix and save my arms around periodically for exercise. Feel like a wally but…
I used to knit but my right hand is no longer able to manage anymore. My handwriting is really rubbish. I can’t even read it myself!
I have never tried colouring in. Maybe I will give it a go. And ask the library for what is around .
I really hate this horrible thing as I am sure everyone who has it does!!! I want my life back. But that is not going to happen.
It’s a miserable thing to have your hands fail as well as your legs. It happened to me too. My handwriting is unreadable now. I still try to do the crossword in the newspaper everyday. I write the letters carefully (slowly) in pencil with an elastic band wrapped around it so I can hold it. Sometimes I write an important letter badly, can’t read it and think it’s a P when it should be an R. So annoying.
Do try the elastic band thing, especially if you’re going to try the colouring in.
I read a lot; books used to be my best friends, now it’s harder to turn pages and hold them I have a Kindle. I don’t remember the plots but it doesn’t stop me, in fact ultimately it’s cheaper as I can read the same books I read a couple of years ago (or even a few months ago!) and not remember anything about them.
MS is a bugger, it’s taken my life, utterly shaken it up, ruined my legs, hands, bowels and bladder plus my brain. There’s not much of my body that’s not been affected, but I still do what I can.
I do feel for you, being disabled and alone all day. I’m fortunate in that a year after my legs gave up, my husband took early retirement. So although I was alone for a few years becoming gradually more disabled, I only had a year of complete disability and being alone all day. And I managed. I think the fact that I’d been at home alone before becoming really seriously disabled helped.