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How MS affects my day

HOW MS AFFECTS MY DAY

To day I thought I would write a post about  how MS affects my day… It might make an interesting read to tell everyone what it takes to get me through the day, starting from first thing in the morning ; the help I need and get from my Husband and the tools and equipment I couldn’t do without.

First thing in the morning, my husband gets my walker (Zimmer frame) and I use the grab rail by my side of the bed, on the wall to pull myself to my feet, I need help to get to the Zimmer frame (my walker) and then I get into our on-suite, and either take a shower; with hubby’s help to get me in and sit on my shower chair.  Holding on to the grab rails wash my hair and body, he helps me out and he gets the chair out, while I stand and hold the grab rail. I  then very gingerly step over the lip of the shower base whilst holding on to him and then get out sit on chair and he helps me get dry, or on those days I don’t shower (it does take a lot out of me), I have a strip wash while siting on the toilet which has a seat raiser, and pull down grab rail, we are lucky that the sink is next to the toilet,  so I can reach the sink while sitting on the loo.

Once dry and with the walker and grab rail manage to get up, I get back to our bed, where my hubby picks some cloths and helps me to get dressed, I brush my hair and use the walker to get to the top of the stairs where I sit on the stair lift… I named him “Mario” because  after going round the corner of our stairs slowly, he speeds up on the straight, and then starts slowing down again at the bottom round the banisters to the ground.  Hubby gets my walker ready and I use the grab rail , and he helps me to my feet, I walk with the roller to my raise & recline chair where I sit and lower the chair, turn on the air cushion pull over my “over the chair table” and hubby brings my breakfast;. Normally I have a small bowl of muesli, coffee and water bottle to take my first load of tablets, 7 in all.

Daily Equipment

After breakfast I put my makeup on do my hair then I’m ready for the day. By then I’m exhausted but check my emails, and blog to see if I have to reply to anyone. I spend a couple of hours writing my next new post and I then email this to my Editor, who is my younger sister in Australia. She checks it out and adds her artistic flair in the form of diagrams, pictures or photos;  she has a back ground in graphic design and does a fantastic job, her input  bring my posts to life and she has a funny way of choosing exactly the right image to describe my feelings in a picture format. We are a great team really.

When she is happy with what she has done she then emails the post back to me and I check again that I’m happy… when we are happy that all is as good as possible  she presses the button and launches my post into cyberspace for you all to read…it’s a lot of work but so worth while, and by reading your lovely comments I believe you think so too.

I would like to take this opportunity to thank all of you who have sent me your comments. The blog has become such a big part of my life and I’m not sure what I would do without it.  I have been fortunate as recently a couple of International  MS Society have seen my blog, and have ask me to be a monthly guest writer, so that takes up a few more hours a month, many people seem to enjoy what I write, which has come as a great surprise to me, because most of my life I have been told that I was no good at writing.

I know my spelling has improved with the help of spell check, but my punctuation hasn’t, that certainly one of the important jobs my Editor does for me, adding punctuation to my articles… She (my Sister) explained this to me the other day –  she said that when I write I need to breath… and every time I take a breath I need to use some kind of punctuation 🙂 the vision of her reading my 700-900 word posts without a breathing spot made me laugh and I can just see her sitting there all red-faced  and gasping for breath after reading my posts with no punctuation :-). Anyway I think my writing has improved and my Husband says the more I write the better I get.

Thank you Darling, praise indeed coming from you.

Amazon Lady Global Meeting

About twice a week I call my sister and we catch up and have a good natter… the Amazon-Lady Global meeting. I also call my Mum on a weekly basis just to check how she’s going. As my regular readers would know all my family live in Australia. My mum has started line dancing classes and goes to the  gym three times a week plus daily walks, she also works once a week as a volunteer at her local library   at 78  she has a very healthy and active life style and I I’m very proud of her.

By the time I’ve done all that I need to empty my leg bag, so a trip to the loo is on the cards, so off I go with my Rollator, being careful not to fall,  and its normally lunch time by then and time for more tablets as the first lot have now worn off. Well that’s a typical morning for me. Time for lunch, what does the afternoon/evening hold? Hope you enjoyed reading about How MS affects my day.

Until next time… bye for now AL

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MS and brain lesions.

MS and brain lesions and how to get things done!

Reality hits home

I would like to start this post by discussing a few  points about how MS and brain lesions effect my every day life…I find that on a daily basis, when I talk to anyone I have to close my eyes and somehow that helps my brain search through my memory banks and it’s the only way I can remember what I’m trying to say.

With this in mind i would like to offer a small tip.
Get yourself an equipment diary/ Lesion Backup Book.

Memory book

Every time you get a piece of equipment or speak to someone about an item or service, take down their company name, their name and contact details, telephone number and email address. This might sound obvious but learn from my mistakes when you have a problem with something it can take hours and even in some cases days to find the right  person or persons to sort it out.What do I mean by that! Well i will explain a situation i recently had and then you will see how important it is to have a record of everything so that when your Brain Lesions let you down you will have a backup. ” That is if you can remember where it is”! 🙂

I have a riser recline chair which I couldn’t do with out…When i first received the chair it had an air cushion replacing the original seat, that is a great help because I sit on this chair some days for 14 hours. That is a lot of pressure on my behind… and the last thing I need to add to everything else is pressure sores.  Anyway  I called my OT people who originally organised the item but they said I would have to call the Council and speak to the Adult social care team. I called them and was told no I need to call the company that the OH asked to supply the items. So i got the number called them, but surprise surprise I need to call the manufacture of the item. So I called them, and guess what?  They will not do anything without a letter from the OT to ask them to visit me to sort the problem out. Apparently they need a paper work trail!!!  so back I went to the team and they don’t do that… so what the hell do I do now?

Very very frustrating….And I’m left sitting on a cushion that has no use at all, its like sitting on slats and  extremely uncomfortable. Added to the fact that my bed is also extremely uncomfortable and now my chair, I feel quite miserable and can not get any real comfort day or night because of the blasted paper trail and red tape.

Fortunately I received a call from someone it the OH department who said they would deal with it for me. I later got a call from the supplier saying they would be with me in the morning with a replacement cushion, why on earth couldn’t that have been sort out sooner?  Anyway better late than never.

The electric bed has come to a halt and i am still waiting a letter from my OH people to say the bed quoted would be suitable. And  as yet i have heard nothing so today i made yet another call to the OH department and had to leave a message, so have to wait for a reply. All the other paper work has been emailed over to the MS representative to send to the MS head office in London, I expect that  when they do finally get all the paperwork… it will still take ages.

Today I got a phone call from my OH, she asked if she could come over next Monday just to check before she writes a letter to confirm my need for an electric (profiling bed) are correct, she is happy to write a letter to say that is what I need, also this Friday the head district nurse is coming over to hand deliver a letter to say the same thing, so I hope with all this information the MS Society doesn’t turn me down for funding, so fingers crossed I hope to get a bed that allows me to sleep through the night.

The OH turned up on Monday afternoon with tape measure and clip board in hand, my husband took her to our bedroom to see the bed we have at the moment, when she came downstairs we talked about what I needed and what she thought I needed…We have a super king size bed at the moment (we have always had a bed that size) The bed only fits in one position in our bedroom. I sleep on the left side which is right next to the en-suite shower room, we have a grab rail on the wall which I can reach easily from the bed when I sit up, I can do that by swinging my legs round and over the edge to get in  a sitting position. I can then pull my self to my feet and my husband passes my walking frame round and I get onto my feet and into the en-suite. That works quite well for me but she was concerned that there was little room between the en-suite and the bed to use a wheelchair, we said that all the doors in the house are too small and a wheelchair can’t go through any door.

She then said that there was not enough room for a hoist so they would have to put a ceiling rail with a hoist, and because I am tall, that would be the best option. Her concerns are that carers need to be able to access both sides of the bed to turn me over.

I was holding back the tears as reality hit home hard as i listened to her words.  It is very hard to accept the reality that my MS may someday deteriorate  to the point that i need people to turn and lift me out of my own bed. I managed to say  well fortunately we don’t need that yet and please God we will never need that. But she kept on to the point where I could see my husband was about to be very rude.  I tried to finish the meeting by giving her all the contact details and quote from the Mobility shop who quoted us the bed and politely managed to get her to leave.

I have been quite depressed about the whole experience and said to my husband I can’t deal with things if I must have a hoist, that would be the final straw. I can’t stop thinking about it and I am getting more and more depressed about it. So let’s see what she puts in this letter, she said she would do it hopefully this week and email the final details to me… Meanwhile i wait and ponder and try to stay positive with the reality of my MS looming in the back of my head.

Will keep you updated, so until then. Over and out.

Amazon lady

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