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 banksand 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.
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.