Thursday, 4 September 2014

Will I die in this room?



Hi all.

Have been putting off writing this down but if I don't I will go mad.

For those who don't know I am housebound (well bedroom bound) and have been stuck in this room for SEVEN YEARS.

Our stairs are very narrow and steep and the sitting room is too drafty to sit in. Then there is the pain from getting up out of a sofa and back down again yadda yadda.

Anyhoo I threw myself on the mercy of the social services and asked would I be eligible for there adaptions grant.

I had done this once in the past. We bought an all singing and dancing shower pod thing with a seat thinking it would be the answer to all our prayers but the seat rusted (could only happen to us!) and my autistic daughter hated it as it was so noisy (needed a pump) and she screamed the entire time.

So then I saw a walk in bath with a shower over it and thought voilá that is the answer to our prayers and phoned up to get a quote. Whoa £8,000 for a bath!!! So we asked social services to help with the backing of a letter from our daughters specialist. To say they were rude is being polite and at the end the woman said she couldn't do anything to help someone who stayed upstairs and as our daughter could walk she didn't need help into a bath!!

OK fast forward to 6 years later and we asked again. Was thrilled to see someone new as was not looking forward to the third degree from that woman again. At the start they wanted to put in a stairlift even though there is not the room. Then they suggested a lift which would come out in the middle of our bed! Then they said a wet room at one end of our kitchen?!?!

Anyhoo in the end they said I was eligible for the £30,000 grant to adapt the house. I asked for a bedroom and wetroom to be added on downstairs and they then said I would have to wait for the work to be done. One year later I finally get a call to say I have reached the top of the list and they would be coming out to go through our finances (which they had already done).

So hubby phones them back to say we had already done all the paperwork and was just waiting for them to come and start the works. To which he was told oh you won't get a bedroom and a wetroom for that grant it will cost more. How much more?? Oh we don't know till we get the architect to draw up plans and price it up. And you didn't tell me this a year ago because??

We don't have huge savings (and if we did we wouldn't be allowed the grant in the first place) so we can't say do it and we will see how much over you go as we have no money, no chance of a loan so we are stuck.

So again I ask ............. Am I going to die in this room?

Thanks for reading
(if you did)
Hugs
:0) xxxJoolsxxx

Thursday, 28 August 2014

A Fibromyalgia Petition




Hi everyone sorry I have been MIA for so long. It seems the summer hates me LOL. I have been drained and tired well you know the story.

Anyhoo I am all set to get my act together and get back to blogging and You Tubing as I am going stir crazy in this room.

In the meantime the lovely Diane Bradley @diazzy on Twitter allerted me to the Fibromyalgia Petition so I of course signed and shared and am hoping all you can do the same.

I went down a list of Fibromyalgia groups on Facebook and posted the link too so can anyone reading this please spread it as far as possible as we need 100 thousand signatures befor parliament will pay any attention to it thanks.

This is the information on the petition. Thanks to @TheHuntley for making me realise people need info!


FIBROMYALGIA IS A REAL ILLNESS WITH NO CURE.

  • author: Diane Bradley
  • target: The Prime Minister David Cameron & Rt Hon Jeremy Hunt Health Minister
  • signatures: 11,890


Please sign this petition to help raise awareness of the condition known as fibromyalgia.
We need the government and the health department to recognise this illness for what it is, a debilitating life-changing illness for which there is no cure. Every day, people who suffer from fibromyalgia endure chronic, widespread pain. It feels like a flu that never goes away. And there is no help on the way.
I have been living with this illness for many years. I often wish that I could have my life back, but there is no cure for this condition. They say that all they can do is try to relieve the pain, to make my life tolerable. I have tried many different medications and none of them have helped.
All I want is to make sure that someday there will be a cure to relieve this constant pain that so many people suffer from.
I have started a campaign, not just for myself, but for the millions of fibromyalgia sufferers out there. We get a really raw deal: the medical world and the government have basically turned their backs on us. We have to fight for every bit of help we get, whether that is medical or financial.
We need to get 100,000 signatures, before this petition will be eligible for debate in the House of Commons. Fibromyalgia research is underfunded. Our aim is to bring this to the attention of the government and demand more funding for a cure.

So off for now but hope to be back VERY soon
Hugs
:0) xxxJoolsxxx

Wednesday, 26 February 2014

A Great Site




I was honoured to be added to the Fibro Blogger Directory but can not seem to add the badge to this blog. Either its not accepted by this site or it is a brainfog overload. Please if you have a spare few minutes pop along and have a read it's great.

:0) xxxJoolsxxx

Monday, 3 February 2014

I'm Alive



So sorry I have been on the missing list for so long

I will try and organise myself and do more videos

But for now here is a quick hello


Thanks for watching

:0) xxxJoolsxxx