Anytime babes, glad your back!!! xxxxx
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HURRAH for a wonderful positive post, even though it was a subject we all dread. I hope you feel much better today Mags, sending you a big hug. Your a VIKING hun. xxxxxxxxxxxx
Yes we will, if you ever feel tearful, just come on here, rant, rave, laugh, cry we dont care as we have all been there. You are going through grief… there are stages of grief. I beleive its no different then loosing someone to being diagnosed with MS. We have lost someone, part of ourselves.
The five stages of grief.
Denial, anger, bargaining, depression and acceptance
Take each one and go through it. I did this years back and finally I accepted what i was given MS. I dont look back now at what I lost, but what i have gained, yes gained, so many things. I am even a chicken whisperer now as i got myself some bantam chickens to get out of the house into the garden, i care for them everyday and they help me get through all of this.
You will get there, DONT be so hard on yourself ok. Its a normal reaction, we all go through it.
There are a lot of SOGGY MS nurses around lol.
Now i hope you have a lovely weekend if its sunny and warm sit outside sunbathe with a nice glass of Pina Colada, put a tape of the sea on, and close your eyes, and drift off and think of yourself on a beach in the Caribbean or Hawaii lol, and just chill and relax. xxxxxxxxxxx
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I think we also forget that MS is different for everyone. I’m still walking, but my upper body is as if not more affected and doing a course or setting up a group or volunteering are all impossible for me. I’ve tried everything and failed because of fatigue and symptoms. A huge danger with some of the more exuberant and strident advice is that the recipient begins to feel that it is all just a matter of willpower and, in addition to making them feel rubbish about themselves, they decide they aren’t trying hard enough. I thought this a week and a half ago a d overdid it. I have now had 10 days of severe fatigue, symptom flare and necessarily had to abandon my little daily exercise routine which means I’m getting weaker. We all do what we can, suggestions can be helpful but Im deeply grateful to Krakowian for speaking out on behalf of pwms who are like me.
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Sssue, sometimes a ‘like’ just isn’t enough. I love your philosophy and empathy. Fab post.
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Hi Dawn,
I stumbled across your post today when I googled something along the lines of “I can’t cope with my ms.”
I’m really struggling just now too. Dx with rrms about 3 years ago and had a relapse about 6 months ago which has “properly” disabled me.
Rollator to get around the house, crutches to get to the car and a wheelchair when I get taken out. I know It could be worse. I can’t drive just now and the realisation that this will most likely be a permanent thing is really hard to accept. I live on the outskirts of a small town and I am virtually housebound until my husband takes me out. I do go to counselling every few weeks and it’s my big trip I do by myself by taxi. It helps to offload to someone. All that crap in our heads needs an outlet!
Im browsing for a powerchair. I think it’ll help me immensely. Being stuck indoors all day is mind numbing, depressing and frustrating.
I’ve not worked for a couple of years because ironically the lumbar puncture done to confirm diagnosis of ms caused me loads of problems and disabled me before the ms did! I started a business with my husband about nine years ago which him and my son and bumbling on through keeping it going. I’m actually glad to not be doing this job anymore…working in a hot kitchen with my husband was never easy…but I wish it was for reasons other than ms that I wasn’t working!
I feel a lot better after reading this thread. I was in tears before. Knowing that there are people going through the same emotions and difficulties helps.
Staying positive all the time isn’t possible.
I give myself permission to be a grumpy moody depressed cow on a regular basis. Getting back out of that rut is hard work.Sometimes just going through the motions of being positive gives me a wee kick in the right direction.
Hope things start to improve/become bearable for you (all)
xxx
anon
yes get a power chair!
the difference it has made to a friend with transverse myelitis is incredible.
i can’t bear to be stuck inside all day every day.
no longer drive but am capable of a hobble to the local wetherspoons where i have a coffee and do a spot of people watching.
is there no local voluntary group who could take you out, that would be excellent.
Yes to people watching. One of my favourite pastimes. The savings will have to take a dent. My husband can be a bit thick when it comes to mental health and how it effects me being home all the time and not be able to do stuff by myself. He’ll need convinced it is essential to part with all that cash. I need to make sure I’m looking at a powerchair that meets my needs. (Enough power to cope with a reasonable hill and deal with kerbs.) Also need to stop fanaticising about the all singing, all dancing, all terrain powerchairs
Adapting takes time and is a continuous process - you certainly need to sort out your mobility to
get you out and about safely. I can no longer drive so needed to do a rethink.
Off road:
I would like to get a Breeze S4 Scooters range from TGA Mobility - good but costly. I am looking for a used one to go off road up country lanes etc.,.
At home and shops:
I did have a trip to NHS Wheelchair Services and got a Quickie powerchair Salsa M2 mini, which I have ramps for to go in the car. I am happy with this - now safe at home and can go most places easily at 6mph. This powerchair is also narrow so you won’t need to widen doorways at home - a big saving. It is also designed for folk with MS and MND.
http://www.sunrisemedical.co.uk/powered-wheelchairs/quickie/power-wheelchairs/salsa-m2-mini
You will need to be a wheelchair user at home to get this on NHS prescription, and your arms too weak to cope with a manual chair.
So if you are having falls at home, and have weak hands or arms, it is worth getting an appointment for an assessment.
First I had an assessment and was measured at the centre. Then the OT and engineer brought a powerchair for me to try at home - this was ordered and took about 3 months for the whole process. I also had ramps fitted to my back door by the council.
The good thing about the NHS powerchairs, is they are given on loan for 5 years and they cover the maintenance.
So they are free to the user. A big saving.
Good luck!
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I bought a second hand scooter for £600. I can zip into town, and back, whenever I want and not have to depend on anyone.
When my wife once asked, “Why do you have to go out?”.
I told her, “I’m going for the sake of my mental health”.
Sane Anthony
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Prof Hawking’s only advice on disability was to focus on what could be achieved. “My advice to other disabled people would be, concentrate on things your disability doesn’t prevent you doing well, and don’t regret the things it interferes with. Don’t be disabled in spirit, as well as physically,” he said in an interview with the New York Times.
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I take advantage of being time rich. I have always been linked to music since I was 4, one way or another. Over my years, I have always felt that although music was in my life a lot, I never had time to investigate further. I have played many types of music and listened to loads. What am I whittering on for? Anyway, the winter for me now, especially during this bad weather, sees me attached to my stereo, cd player, wireless stations, spotify, TV music stations, IMDB, archive music sites. So, for all those years when I wanted to just spend days and nights finding more music, I now can. I sometimes can’t go out, can hardly do anything, but I can investigate and listen to things I would have never found if I was still able, working blah blah.
So, I have turned a crappy situation, into a learning very enjoyable situation. I have been awake since three a.m. today doing my injection, trying to stop my stupid body doing stupid things, then following lots of music sites to find out about one track I heard on a film the other day. It led me to an English composer and singer I had never heard of. So I am still up listening to it. It might not add up to much in the grand scheme of things, but for today, it has made me happy. Today, if my leg works, I am heading off to HMV to get two new cds which before yesterday, I had never heard of.
So again, I suppose it is about finding your thread. Are there books that you wanted to read, plants you wanted to find about, I.T. that you wanted to research, learn a language, family history? Whatever your thing is? We are all on a very large learning curve, without a flamin handbook!
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