Hi there

I have been 'lurking' on this board for quite a while, I have an interesting story!!

I am 29, and I met my husband 4 years ago. When I met him, I had suffered from Rheumatoid Arthritis for about 4 years or so and had fairly good mobility, I could walk without any aids, although I could not walk far. In September of that year (2004, we met in July) I had to have a wheelchair to go outside with, The following Jan/Feb (2005) my consultant admitted me into hospital for what turned out to be over a month, and when I was discharged I was only able to walk with 2 sticks (I should say that my arthritis consultant is not a very good one and I do not get on with him, he for one does not believe that I have arthritis!!) I am sure that it would not have been diagnosed for nothing!. I managed to stay out of hospital for the whole of 2006, but it was in Christmas of that year/new year 2007 when I moved into a bungalow that I was forced to stay in my wheelchair full time. I now have got to have a fully tilt and recline chair cos of my poor sitting balance.

In March of that year I had to go into hospital with a minor bowel impactation and I came out with no movement or feeling below my waist/legs and doubly incontinent. All that I was told was that the District Nurses would come out and sort me out with pads etc, which they didnt and I had to push for.

Since then I have been slowly getting worse, my balance is slowly going, i can no longer sit up unsupported, my eyesight is going, and I am generally detioriating, and the District Nurses are wanting to give me an electric bed and air mattress, so we are looking into getting a single bed for my husband to sleep in and hopefully push them together as we still want to sleep together if at all possible, after all we are still young!

I guess what I'm asking at the moment is if anyone knows what the electric beds are like that the District Nurses give to you, if they are the white plastic ones that you get in hospital or if they are different. I live in the UK by the way

take care

Purple

Hi Purple. I was just running down the posting list when I had an idea. I am brand new to this particular list, but have been on many others such lists in the past and have learned something.

I see that no one has responded to your inquiry even though many have read your post. There are a few others here who are experiencing the same situation, including me. I too, have posted and then waited in anticipation for a reply, and yet one never comes. Soooooo, I have decided that I will write in reply to those who have posted and yet have received no reply. On a list such as this, a reply means a lot.

I am in Chicago, so I can’t say how the beds are in England, but I can speak for the ones here in the US. I spent a number of months in one and I found it quite comfortable. It had all the bells and whistles and once I adjusted the blinking thing to my comfort, it was a bit of all right. I think you would like an electric bed.

I am what is referred to as a walking quad, meaning that I have pretty much lost the use of my arms and legs, but I can still walk a little and get around by what is known as furniture walking. I had my spinal cord crushed, which gave me a bad way to go.

I must say I am sorry to learn of your worsening condition. It sounds as if you have not been given the proper diagnosis as yet. This is a very important item we must all have.

It is a shame that no one has responded to your letter, as it seems that you should have a lot encouragement, both for you and your husband.

I am what they refer to in England as a Vicar, or here in the states as a Reverend, until I became disabled, as I could no longer pastor a church. I think perhaps I can help a few people here on the list and at least offer a prayer for those who would want it, such as you and your husband. There are feelings expressed in your letter for both you and your husband that you have not spoken of in words.

My family is from England, from the Middlesex region. The family name is HOUSE.

Bill of Illinois
jetski@grics.net

Hi Puple. Think I am stalking Bill and replying to people he has. I am sorry to hear about your situation, and not sounding good or correct. I think you should talk to your GP and find out just what is going on, you may need further test, by somebody that is specilsing in your problems. I would also think you need to have O.T. around to help you sort out what is required, Sorry that the DN were slow, they are usually pretty good, perhaps insrruction were not given to them.
Also if you are not to happy with your consultant, re the arthitis, ask to be moved to somebody else, maybe a different hospital. You can do that, Do not give up, you seem to need more help. Let us know how you are getting on.
Cate

As far as the electric beds supplied by the NHS goes they're not too bad at all, they do have a white metal frame but the one I was given has wood effect head and footboards and doesn't look to institutional.

HTH

Hey I have an electric bed from the Dn atm and its quite good. Its a minimal white frame, wooden head/foot boards. I dont have any sides but u can if u want. The make is SIDHIL.

cheers

Hi there, im a newbie (joined just now). I am soon to get an NHS electric bed and have been told by my OT that they are the same as hospital beds but a little bigger (cant wait!) and i have been using an air mattress for 3 months now and they are really good once your used to them and they can be altered to suit you.

Hope you get sorted and dont let them push you into having something that you dont like.

Just a thought....they do have pressure relieving airmattresses in "double" rather than twin. Our DN tried to get us to use one, but our frame is only 12 inches off the floor and they (the mattresses) are only 5 inches or so, so my back would KILL me getting him ready, and changing his dressings (at that time). One side is the pressure relieving and the other is just foam. Maybe your DN could look into that for you. It was provided by NHS.

Hi there, I hope by the time you read this you will already know yourself about the NHS electric beds just sorry I didn't see when you wrote it so couldn't give you my personal opinion. But I had one from my DN and loved it.
And I hate anything that reminds me that I am paralyzed C4/7 the only reason I gave it back is because I got in a new relationship and missed cuddles etc.
However there are ways round this,like using your husbands bed for sex!
Benefit of this is you get to go to sleep in a nice clean bed.LOL
I am back on my propad double also from the DN but do miss the electric one lots. I look forward to seeing how you found it, but also like someone else said the OT's are able to provide raisers for beds to make a double higher.
If I was too late to help you I hope my input has helped someone.
Still quite new to this site but think it's wonderful
Luv Tan x x