I have never written about the side of CF which includes help/benefits. I think because I'm ashamed of receiving them as you hear so many stories in the news of benefit scroungers and it gives disabled people a bad name- especially if you look "normal" and don't look as though you are ill from the outside. But the truth is, I could never work a typical 9-5 job. I've tried working in the past, but it was basically just a waste of the company's time and money hiring me as there was so little I could do and I was so often too unwell to even make it into work.
I then was advised to claim the benefits that I am entitled to: DLA (disability living allowance) and ESA (employment and support allowance). Alex was also advised to claim for carers allowance as he was looking after me for over a certain amount of hours per week. With this, Alex and I were able to start living independently! We had our own flat, could pay our bills and could even afford to save to go on holiday.
Now, a few years down the line, it seems all was too good to be true. Everything in our independent lives has crumbled in the last few months. It's a nightmare. Today they have just cut me off ESA as Alex and I are married now, and apparently that changes everything. We have no where to live of our own and so have moved back to my parents.
We don't own much as it is, but our most precious things are our animals (one dog, 2 kittens) and we just don't want to have to rehome them because we can't afford to look after them. It seems that I'm being punished for having CF and for trying to live independently and "normally". Does the government really want me and my husband to have to live with my parents forever? To have them pay for our meals and keep a roof over our heads, instead of saving their money for themselves? All because I have an incurable illness (that I would happily exchange for a healthy body in a flash), which means I can't hold down a full time job and need help from someone to get around, dress, wash, administer meds etc when I'm ill?
Is making sure the bankers of this country get their bonuses really more important than giving people the chance to LIVE as opposed to existing? It's not just me and my problems, there are millions of people who aren't given this chance: people on low income, other people with disabilities, people caring for relatives, single parents.... Personally, I think this government have their priorities mixed up and I don't think lower class citizens of this country will want to stand for this much longer.