Monday, 4 November 2013

The financial stresses of being "disabled"

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.

Sunday, 3 November 2013

Day 7 update

So I've been in hospital a week now and even though I have a cold (side effect of flu spray) I'm starting to feel better- not coughing as much. But this week has had its set backs! I was told by the docs that I might not be getting my PEG this admission now as they want me to be able to do blood sugar testing by myself before having the PEG put in. As well as have some psychology appointments to make sure I am mentally ready for the PEG (even though I have been asking for one for 2 years!!). The dietician and I are not impressed. This always seems to happen here though; they "promise" one thing, then back out at the last minute. Gets your hopes up for no reason and makes trusting the team very hard. I understand these factors are important before having one put in, but they should have said so months, or even years, ago so that I could work on them and be ready by now.

I've been working on my blood sugar monitoring. They monitor bloods to make sure the sugar levels aren't too high. Apparently though, mine are coming in too low. I've told the nurses this is probably because I'm in hosp and don't have much of an appetite in here, as I'm confined to this room and the en suite and can't use up much energy compared to if I were at home living my normal life. Somehow though, I don't think the docs are going to accept that theory tomorrow lol....

Being in here reminds me how grateful and lucky I am to be able to do home IVs. It's so difficult to sleep, eat and remain positive in here. It's not the nurses or cooking staff's fault or anything, it's just not home- and I'm very much a home bird!

Thankfully, I was able to come home for a few hours this weekend and saw my family, Al's family and my Barney bear and the kittens Ethel and Arthur. Was so nice! Picked up my spirits :)

Oh, and if anyone is interested in the numbers and figures of my sats, weight, lung function etc they aree....
Lung function last week: FEV1 59% and FVC 90%
CRP levels: beginning of last week- 90; end of last week- 52
O2 levels: 93-96%
Weight: 45kg