I am not happy. Last night , before I went to bed, I checked my emails, as you do. I saw I had a comment on my last blog post. I probably should have ignored it, but as I was basically called a hypocrite, I felt the need to clarify a few points. It went as follows...
"You totally contradicted yourself "in the case of those with CF who can work and aren't restricted, sitting on their arse claiming they can't work cos they may get ill".You're well enough to go the gym 3 times a week yet you got money from 2 CF charities to go on holiday hmm maybe pot calling the kettle black comes to mind."
You absolute moron, you have no idea do you? First, yes, I go to the gym three times a week. This amounts to between 2 1/2 and 3 hours. Show me a job that is 3 hours long that gives me full pay! Seriously! Secondly, I struggle with the gym every time. I openly admit that. I can't keep up with everyone and when something calls for 3 rounds of x amount of reps, I struggle by the second and usually stop by the 3rd. My head is pounding, I'm having a coughing fit and I'm aching all over. More to the point, its a vital part of my CF treatment that I do exercise. I'm fully encouraged to do whatever I can, and if you can get the gym, then brilliant, cos that place has everything you need. (I also really don't pay much for my membership. Given that it went via a gp referral and then its half price on top of that due to being on certain benefits, its £15 a month).
My comments/rants about those who sit on their arse are directed at a certain type of people with cf. I in no way tar everyone with the same brush. It was directed at those who have amazing lung function (100% or higher meaning their lung function is better than the average healthy person!) who don't have IVs, who don't suffer fatigue and pains, and who CAN do things, but chose not to, using CF as an excuse. These are the ones who say "cf means I can't work" "I can't exercise because I have CF", and my personal favourite "because I have CF I should get ALL the benefits" I don't claim anything I'm not entitled to, and I don't get much, but we manage. Some people with CF think CF equals an automatic entitlement to DLA, for example. Well certainly DLA was originally for the costs that occur with your illness, like extra food, needing extra heating, fuel for constant hospital trips, but again, these people don't need any of that. They literally don't qualify as they aren't considered ill enough, don't struggle walking and don't need help with any of their care.
I have worked. Ive had three jobs which were all pretty pathetic and short lived. My main reason for stopping looking for work is because my lung function has a habit of dropping up to 25% in a short amount of time when I'm ill, and I really bloody feel it. I started going to the gym, not only to increase my lung function, but also to try and stabilise the sudden drops. It's better than it was (due to exercise which I have to keep up whether I have a job or not... bare in mind I struggle with the energy to attend or keep up with these 3 gym classes in the first place) It dropped 15% in December and then another 5% in January. That was due to infection. Thankfully because I don't get complacent with a sudden drop, I keep the exercise up and my lung function recovers - something I probably wouldn't have the energy to do if I was working. I also have IVs between every 2 weeks and 2 months. This would hugely affect my ability to do many jobs as a lot of employers don't like you to go in with a massive needle in your chest. Not to even mention how messed up IVs make you feel.
Finally, don't you dare mention that money for the holidays. It has nothing to do with my lung function, and you have no idea about my financial situation. And I'll tell you it isn't always great. My boyfriend works full time and gets paid by the hour. He picks up as much over time as he can. He gets working tax credits because, guess what, we have a low income. I get DLA which mostly goes on food and fuel. We don't get help with council tax and we barely get any housing benefit as it basically gets replaced as the working tax credits. All of that doesn't actually add up to a lot, but we manage to pay all our bills and rent and buy food with it. We also had enough left to put a small amount into saving every month because we're sensible with our money. However, when money times get difficult, the money we've put in will slowly be taken out. It does get replaced, but those months where we were taking the money out doesn't get added to, so the money sort of just stays static in the end. To get the money which was GIVEN to me from those charities, which I applied to with full disclosure I was applying to the other one, I had to show I was on a low income - lower than the basic standard of living that the government says you should live on.
Also, more to the point, given my limited options for work, finding something I can do, that I'm qualified for, and that is no more than the hours I can work, is pretty damn difficult. My hearing is a huge factor here and had I not become deaf, I expect that I would have a job if I was in the same position with my lungs now. I could have a job sitting at a desk talking on the phone. Something that doesn't involve running around, lifting things, standing for long periods of time, but I wouldn't have to worry about the hearing so that would open a lot more jobs up. Fuck, I can't even get a retail job sitting at the till as they all seem to use headsets and walkie talkies now. Not to mention the fact that I'd never be able to hold a conversation with anyone I don't know. There's also the fact I've been on steroids for about 7 years now, they affect your immune system and I'd probably pick up every cold going, which I can never shake off and always ends up with IVs.
I am so angry you left that uneducated, passing comment on a blog I doubt you've read before. I should have ignored it, but you saying that I can work, but don't bother, and that I shouldn't have been given any money for a holiday we can't otherwise afford (and probably won't ever again) is horrible.
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