Go fund me?!

I can't quite believe that this is happening but a good family friend got in touch recently and asked if they could set up a gofund me account for Tony Amelia-Rose and I to help us out so we can improve our quality of life. It isn't something I normally discuss on facebook but this is set up to help with things such as a new wheelchair as mine is broken, although we are making do with it it isn't ideal to be going around in a broken wheelchair, the NHS don't provide wheelchairs for people, you can get vouchers but these don't come anywhere near the cost of good wheelchairs.

 

Also my GP and pain management consultant have decided that although we finally have a medication regime that is getting me out of bed most days it is so high (I am on 600mg of morphine a day and take 3-4 break through pain killers every 4 hours, plus paraecetamol, pregabilin and meloxicam ) they don't take the pain away by any stretch of the imagination but it does take the edge off enough so I have been able to begin to rebuild a life for myself. They want to stop it ALL now though, EDS has been proven to respond well to alternative therapy but the NHS won't fund any alternatives, I am beyond scared at what the future holds when this med reduction happens. It's going to be agony. We can't afford any alternatives therapies as things are very difficult at the moment.

Any money raised would also help provide accommodation for Tony and Amelia-Rose in london, after I have my colon removed my EDS consultant wants me to go for 2 weeks in patient physical rehabilitation to help me 'adjust' to being disabled. I will only be allowed home at the weekends and there is no way we could put Tony and Amelia-Rose up in London, I can't be away from Amelia-Rose for two weeks though, it would be heartbreaking for her as well as me. When Tony had to give up work back in January we were told about the benefits we could apply for, 6 months on and we are only receiving two of them. £60 a week carers allowance and my DLA which we have to use to help pay for my appointments etc This is because of the huge back log the benefits system is going through at the moment.

I also urgently need my colon removed, when I had my bag fitted the surgeon was unable to empty my colon which has stretched twice the size of a normal colon and therefore was carrying twice as much, he warned me at the time that the longer it was left the more side effects I would get, on top of chronic painful bloating I also am getting debilitating stomach pains, headaches, sickness, high fevers that strike any time (it's why you may have noticed I always have a hanky to hand, it's very embarrassing to be talking to someone and suddenly break out in sweats) and have now got a bacterial infection that has bought out very painful boils and spots all over my back and upper body, they've checked ears, throat etc and there is no sign of infection so it's likely in my colon.

I am going to see my surgeon next week to be put on the waiting list for surgery but he is in such high demand his surgery list is huge.If I could have it done privately his wait list is two weeks.

Money would also help provide respite for Tony and Amelia-Rose. Amelia-Rose is around sickness and disability all the time, we try to keep her informed but also protect her from how unwell I am, she needs a break sometimes, time to go off and do fun things, we try to make her life as wonderful as possible but you can't removed EDS from our life unless you remove me! It would be wonderful to send Amelia-Rose off to say go horse riding or something like that. Just to give her some fun time away. I don't feel like I deserve this, it's such a kind wonderful selfless act of this person but anything that would improve Tony and Amelia-Rose's quality of life is great by me and getting my colon out and things like alternative pain management would help me to be the mum I so desperately want to me. I do my best by Amelia-Rose, I try to do as much as i can to be involved in everything that goes on but my pain and chronic fatigue limit what I can do. I know everyone is hard up at the moment and the economy we are in is really hard but if you do perhaps know anyone that could share this please do. Thank you so much to the person who has done this, I won't ever be able to tell you quite how much this means to us.

We are so blessed with the support system that we have from family, our extended church family and friends and I thank God that he has put so many wonderful people in our life. If you could just click the share button I would so appreciate it. Thank you, thank you. Much love. x x x

http://www.gofundme.com/foroursongbird