Benifits

OK so how anyone works the benefit system is beyond me, All i receive is DLA higher rate and I have a motobility car. I have worked My ass off for 2 years running my business, I probably should have stopped work about 6months ago, but I was determined to pay my own way and I didn't want to claim benefits as A) its bloody difficult and every time iv gone to I find it hard to get a penny out of anyone B) because I liked that I was earning my own way, even if it was making me ill. But now i am desperate for money, I am well and truly beyond being able to work, but will anyone give me any money. NO.

I filled in forms for ESA over 3 weeks ago, this is the benefit that has replaced incapacity and is what I should be in a fair world entitled to. I am not, the reason, Stuart earns to much, now you may be thinking fair enough, if hes got enough money to support you both then why should we get money, well no. The wage hes on is rubbish and once hes driven to work everyday 17miles and 17miles back and paid parking £5 a day hes left with enough to pay our rent and bills but we can't afford food or money to actually do anything with. My nurse has been ringing round for a ridiculous amount of time, iv now asked my social worker if she can have a look into it for me. But I have to appeal this decision, until then I am broke. My nurse on the phone stated how do they expect a terminally ill person to go without any money and that I am far ill er than they could perhaps even comprehend, but I still have to go through the stress of appealing and going back and forth trying to get some money. Now I could get a crisis loan and believe me, were in crisis, but if we don't know if were going to receive anything, How do we pay it back?

We might also be entitled to, or should i say Stu might be entitled to tax credit, but they only think he will get £6.60, you have to ask if its worth it at the end of the day, but i will fill in the form just in case.

Another thing iv decided is to give up my car, to get the money. It pained me to do it, but I haven't driven in months and can't foresee me being able to do so until I get a transplant and then if i do i hopefully will be re able to claim the car as i do suffer with sever arthritis, which is the reason i originally got the car, not for my cf although that became just another reason to have it.

So there it is. the benefit system does not care if you are terminally ill, it does not care if you have no money to live, let alone enjoy what time you may have left. David Cameron decided to reform the benefit system, he decided to spit on people like me, who have worked there socks off for as long as they could, he was lucky that hard working tax payers payed him a handsome wage when his son was ill so he could provide for him the best he could, but for those of us who don't live in a well off house hold we will just have struggle and suffer, when we are most in need. I won't even start on what hes trying to do with the NHS.

I can feel my blood boiling just thinking about it.

Anyway on another note, 5 days of being bizzy and they left me a little worse for wear, I had trips out and about enjoying the sun, sunbathing, beach, 2trips to the hospital, which weren't so fun but needed never the less. Unfortunately I have lost 3kg, which puts me back at a low bmi possibly to low for transplant, but I'm hoping they would take into account how ill iv been and not call off a possible tx, my team have said they will contact them. When i saw the figure on the scales I felt the tears brimming, i try so hard to keep my weight up and haven't seen it that low in a while and if it doesn't go up buy next Wednesday then i will start some NG feeds to get it up. Iv now got a routine of 2week of an IV and I change IVs I'm on 2 at a time and one week ill change one the next week I change the other so that if I have any allergic reactions they will know what IV it is. I also got an oxy arm (a device that looks like a Britney mic, it defuses 02 in front of your face) from the hospital for sunbathing, so I don't get tan marks (yes I have my priority's) and also when i need a change because the nasal specs get sore then i can.

All in all i am a mix of emotions, I'm enjoying life and my life is 100X easier now I have the care, there trained in physio now, so again life is easier and my chest is being cleared properly. I have energy for other things, not alot of energy but so much more than I did, as most day getting out of bed is to much, but with the help that's made into an easy job. I am so happy in all, but this benefits thing has been like being smacked around the face with a brick. I know it will get sorted, well I hope and pray it will. But its just so much stress and tear I didn't want to be parting with. Oh and an update on Maud (wheelchair) my brother has her at the moment and is pimping her, I will post pictures when shes done.