How are you coping with MS?

How are you coping with MS?

I wrote about MS in some detail last year, but wanted to go there again as a lot of you have read and commented on the post, so through an update was due.

MS is a complex and complicated condition, from Relapsed and Remittances Multiple Sclerosis (RRMS) Secondary Progressive Multiple Sclerosis (SPMS) Primary Progressive Multiple Sclerosis (PPMS) and all those in between. So as you can see the variety and verity is quite enormous, I personally have SPMS, but since I was first diagnosed in 2013 my Progression has speeded up quite rapidly, I have gone from working, walking, driving and for filling a useful role as a mother and wife, able to do many things that just had to be done, like house work, washing clothes, plus many others that I really enjoyed such as gardening and my passion cooking and baking, sadly none of which I now can do as my mobility has gone to pot and I’m not safe in the kitchen any longer.  so today I’m the old woman sitting in the chair and my dear husband at 63 has had to take over the household tasks, as well as caring for me.

I was interested to see on tv the other night I think it was a Panorama item were they showed that RRMS could be helped with stem cells, they treat a person with RRMS with a cancer drug chemotherapy which kills off the bad cells in the body, before killing off all their cells they take out some good cells and freeze them, until after a period of time when the body is able to have the good cells placed back in they body, defrosted of cause, they then grow and form new cells which repair slowly the lesions in the body. That is how I understand it, simplified I know but hopefully you get it. I realise it only helps people with RRMS so I’m not in the group of people who can be helped AT THE MOMENT but how fantastic that this is possible, if you haven’t seen this program yet try to get  a look on iPlayer.

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I thought I would give you an up date on the equipment I have at home to assist me, first the stair light that’s working well so no problems there, the only thing that worries me is even though the council paid for the stair lift and installation they don’t pay for the maintenance which is £600 a year, we obviously can’t afford that, so after the first year manufacturers guarantee which runs out in September don’t know what we will do if the thing goes wrong then, well we will just have to hope nothing goes wrong.

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I was so looking forward to getting the electric bed, when it arrived and was assembled it looked fabulous, two separate beds in one base so to anyone looked like a super king size bed the same as the bed we had before, we had to buy single sheets which I purchased I bought fitted sheets as I thought these would work better what with my bed able to change position i.e. head, middle and legs could be raised, but as it happens it would have been better to get flat sheets as each time I move my bed the sheet pings off the bed and my husbands sheet moves when my bed moves, well we had no idea had to try it out first so will try out our flat super King size bed sheet before we invest in new sheets, we still use our super King size duvet that works well, thank goodness we didn’t have to buy single duvet. The other worry is every time I move the bed make one hell of a noise like the slates are breaking, David has checked and the slats are still there no damage(at the moment) I’m just waiting for them to break, David said well if it breaks they will have to replace it, but the thought of the bed breaking during the night and me going through the slats doesn’t bear thinking about. Will have to call them and get someone round to investigate, I think the worry I have is that they will say I’m too heavy and didn’t tell the truth about how heavy I was when we orders the bed.

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These do need clean as you need to clean the toilet under the seat, very surprised how dirty the underneath of the seat gets, The only way I’ve found to clean and sanitizer it probably is to put it in the shower tray with a good amount of bleach and leave over night, my husband in the morning sprays the bleach off with the shower head, that cleans them really well, they do need drying with a towel but they come up really clean and smell much better, I can then clean the toilet from my wheelchair while the bleach does its job. The only down side I’ve found is the bleach seems to weaken the hook that sits on the front of the toilet stopping the seat slipping back on the toilet and it does squeak, not sure if it’s the plastic or metal, I expect it’s the plastic which looks as though it has a fine crack in it.

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My lovely red wheelchair I’ve named Zippy had a bit of a problem, I found it very difficult to turn corners when wheeling myself, David also noticed and said in his normal forthright way, (they will have to come and bloody fix that) which of cause they did. Great service came out the next day and fixed the problem, they didn’t even ask what the problem was, but my husband was there with the service guy, he does love a chat bless him. So that’s the latest so far, will keep you updates.

Lots more to tell you but think 1000 words is enough for this blog, keep well and sign up to my email by adding your email address, plus please do pass on the site details to friends and family, and add me to your social media accounts. All the best AL
P.S. Some have asked for my email: iamamazonlady@gmail.com

 

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