Wednesday, 29 June 2016

You can't please everyone

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.


Anonymous said...

I actually have read your blog and other CF ones when I'm in hospital out of boredom. Your one is probably one of my preferred ones because I think you're funny and witty. I just found it ironic that in one blog you gave out about people claiming what they don't really deserve and then say you got money from two charities to put towards a holiday, which in fairness isnt a necessity. Also I've never heard of anything like that before unless it was make a wish type thing for kids, maybe yous have a better system where your from. Didn't mean to cause offence from your blogs you seem clever I thought you would have got the irony of it. :)

Gem said...

Passive aggressive much?

You of all people seriously can't be begrudging someone else with CF a little help funding a holiday.. From a charity that is specifically there for offering people with CF financial help with holidays. Why shouldn't Megs apply for it? She's entitled to apply for these things just as much as anyone else with CF is. You of all people should know how much things add up when you add in travel insurance costs for people like us. Do your research before you start preaching about what she should and shouldn't do. There is no irony- just ignorance from people like you.

Your comment on her other post was quite frankly disgusting and judgemental. You have no idea about Megs' background and how she manages on a daily basis. Keep your nasty comments to yourself in future.

Anonymous said...

It wasn't disgusting, reading it does seem pot calling the kettle black in my opinion, but maybe you are right we should ALL do our research before we judge.
Also by saying me of all people you're right in assuming I have CF too so obviously my post wasn't ignorance it is irony what I pointedo out :)

Gem said...

Actually you stated you usually read Megs blog when you're in hospital. If you spend any time in hospital, your travel insurance will be higher than the average person, so there was no assumption that you have cf. As you do indeed have CF surely you can appreciate the difficulties we all face? The charities are there to help people who are entitled to apply because they have CF... So why shouldn't she? There is a difference between applying to a charity specifically there to help people with CF for holidays etc. and applying to the government trying to claim every benefit going because you think that you're more than entitled to it just because you have CF. There is no irony in this.

You have absolutely no idea of how hard Megs has worked to stabilise her health to a point where she could even start trying to find a job. Megs is my best friend- I saw how frustrated and upset she was when she couldn't find somewhere to work.

Graham Oliver said...

To me the comments by 'Anonymous' read as provocative rather than ironic and if you've got something to say, why make it anonymous? I can't imagine Megan ever hiding behind an anonymous comment so Megan gets my vote on this one.

Anonymous said...

I actually don't know how to turn off the anonymous(I did try)my phone is crap and I didn't wanna bring my laptop with me to hospital because my last one was stolen. I don't have a blog just a Google account, my name is Brian I'm 25 :)

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