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.

Thursday, 16 June 2016

How long has it been this time? 3 1/2 months isn't bad going in comparison to previous attempts! How odd how I used to update this weekly and now I either can't be bothered or don't really think this is the audience for my thrilling tales of failing to finish my 4th cup of tea of the day as I have the attention span of a gnat or how shit amazon tv and netflix uk is recently. At least for a good old series you could get stuck in.

I still haven't done much these days. I couldn't even stick with my attempt to re-watch my Scrubs boxset cos it wasn't even that long ago that I finished watching it. I have a shocking amount of boxsets of tv shows sitting in my amazon wish list that just keeps growing as even though more than half the shows have finished (some even before this decade!) they still cost a frigging fortune. (More annoyingly, half of them I want to watch are on Netflix USA but you can't use things to trick your browser anymore cos they can catch you and get you into a fuckload of trouble).

Anyway. It's mid July, which means, according to my countdown app on the screen of my phone (which certain people think is sad but you get entertained by very little when you're bored shitless) there's 89 days till we go on holiday. I'm not sure if I've mentioned it before, if I have, you get to read about it again cos I'm exceedingly giddy. We're going to universal studios in Florida in September for 8 nights - we've saved up loads, applied to a couple of CF charities (one was a local CF charity that was closing after 10 years so we applied and they sent us a cheque, with a request of a photo in return of us on holiday, the other was the CF holiday fund, who also got some tickets to some parks through their contacts, which has helped the cost hugely). Parents have chipped in too and birthday and christmas money was earmarked for the holiday. It's costing a fortune and it'll probably be something we can only do once, unless we randomly had a huge sum of money fall in front of us. One of the more annoying things in being an adult is how centred around money life can get, and how stressful it is. Especially when one of you can't work.

In terms of jobs, I've stopped looking for now. I've spent years searching and applying for anything within the hours I can do, that doesn't involve relying on hearing and doesn't look too exhausting, but I've never even gotten past applying. So much for 'if you meet the minimum requirements they're required to give you an interview if you're disabled'. Instead, I do what I can to keep myself busy, I don't have a lot of friends and get cancelled on more than is strictly necessary, to be perfectly honest, other than my boyfriend I seem to spend most time with his family, as they're always around to pop in. Not the average life of a 24 year old. I go to the gym 3 times a week which I think helps my health loads, and that's important. One thing I was worried about if I did have a job was that something would probably suffer - the stuff I do around the house, maybe the job itself, or my health, and none of those things are worth letting slide if you can't do it properly. My health, for the obvious reasons, a job, because whats the point in applying for it if you can't do it, and the stuff I do around the house, cos if I let the place get into a mess it would probably have a massive negative affect on my general mental wellbeing. I find it hard to be comfortable and happy in a place that's messy and falling apart, so I like it tidy.

Actually in a couple of months I'll be 25 and that's an odd thought! I don't think I'll do anything for it - I didn't last year and my friends didn't actually notice which is nice... but I don't want to plan something for it to go out the window or look forward to it for everyone to cancel or just not turn up. It makes you feel like shit. I think that's one reason why I actually wanted a job - other than it would have been nice to be able to feel like I'm contributing to money for bills and such, it would have been nice to have someone to chat to or even make friends so you have someone you can meet up with outside of work too. Because I had an appalling time at college and I've never had a proper job, the only friends I have are from school, and everyone else is a friend of someone else.

On the positives, I'm glad I've moved out and I'm living with my boyfriend (2 years ago last Feb and I haven't burnt the house down!), makes me feel somewhat adult! I don't want to be one of those people who are 30, single, living with their parents and sitting on their arse claiming job seekers, or 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.

Actually that's something that's been pissing me off a treat - I work hard at the gym, and even if I feel like crap I do what I can. I had a gym class last night and for some reason kept having coughing fits at the slightest movement, rather than after having put work in to warrant it. But a coughing fit doesn't mean I give up and walk out. I'll catch my breath and join in again and do what I can. It irritates me no end when I see those with CF who claim they can't do exercise - yes you can! "But I cough loads and get out of breath" That's the bloody point! It counts as physio, and more importantly, you can get out of breath and it be nothing to do with CF, you're probably unfit as you just insist you can't do anything. The only way to know is if you stick at it and compare yourself later on, and see if you still get out of breath at the same time. If you do, then yeah you can say its cos of CF but at that point all those days/weeks of exercise have probably done your lungs a good benefit already. People who make excuses are starting to really rile me up. They'll throw lung function numbers around like its meant to stop you in your tracks, but the truth is, numbers don't matter. I know people with numbers at opposite ends of a spectrum and matched in terms of exercise tolerance, or the person with lower numbers doing better than the one with the lung function of a perfectly healthy person.

Right well that's my rant over. But honestly, get off your arse. Your sofa and the dent you're probably making in it will thank you at the very least.


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