To work or not to work

Once again I'm sitting here wondering the viability of trying to work. Despite the obvious, being more ill than you look, I still feel lazy for not working. It's silly though; I have no idea if I'd cope. I'd have to make sure I have enough time to do the things I do now, like cooking, doing the washing and tidying etc and even though it really takes it out of me to do those things, I find myself wishing I had a job too. The main worry is that it'd take a toll on my health. The last time I worked, it was a crappy job cleaning cottages, in hindsight it was a poor choice. Maybe I would have coped better with a job that didn't involve being on my feet all day, carrying heavy things like massive hoovers, trying (and failing) to make beds (which, I swear, is the single most exhausting thing. It's so bloody difficult!) and also not standing in a freezing room folding sheets still damp from the washing machine.

The funny thing is though, which I've probably mentioned a million times, is that I was 18 and had amazing lung function, I think it hit a high of 80%. I lost 20% of that quite quickly when I started to feel rubbish in the winter, which resulted in me leaving the job after 6 months. A 6 hour shift, one day a week, and I couldn't cope. I was sent home more than once when I couldn't continue with pleurisy pain. I don't know if that was my lungs acting up or the situation that aggravated it. So therein lies my problem: Would working send me to a similar situation, where the risk of losing 20% would make me far more ill than I've ever been, or would it be good for me? I'm more thinking of the social side, which is why I stray away from the idea of working from home (although that is the ideal choice, surely?) but I'm so bored sitting on my own, when people don't have time for me and honestly, aside from my boyfriend, the people I talk to most are all online CF friends. Not people I can just meet up with in half an hour and go to the pub with. I'm not expecting to find a job where I'd be best friends with everyone and natter away the day. But people who I'd get on with well, people to chat with or spend time with outside of work too.  

People ask why I don't go back to uni. Not happening. Uni was more effort than it was worth and that was just the students that needed their heads deflating. Add that to uncooperative tutors and being marked down for reasons that weren't always fair, there's a multitude of horrible things I'd rather put myself through than go through that again. Not even mentioning that, while uni is meant to make people into a social butterfly of sorts, I left uni with no new friends, despite trying. The only friends I ever made, and still talk to, are those from my sign language course. This is also why I don't want to do open uni. I'd probably never finish anything, getting distracted while continually sitting on my own. I can't even watch a movie on my own without pausing it several times, so an average 2 hour movie takes at least 5 hours to watch.

I also get people asking stupid questions about venturing into areas of photography. Mainly wedding photography. Because to them, its something that looks easy and you can jump into. I can barely cope being a guest at the wedding, sitting down for the majority of the day, yet alone following a couple around all day with two cameras, flash heads and 5 lenses lagging me behind. I also avoid portrait photography initially, as I'm not very confident with posing people, ordering them about etc. You also need a pretty good customer base to make a living off that. In a dream world, a contract with a massive company would land on my lap and I'd be paid thousands for each photo. But that won't happen. That's not me being pessimistic. Its realistic. A local art shop is willing to sell prints of my work, but that would be money on the side. I would never make enough to consider it a wage.

Ideally, I'd be happy with a job that was part time. I can't work directly with customers (cos of my hearing, its hard enough to understand and follow people I'm familiar with) and I definitely can't work with phones. I'm sick of explaining this; a loop system won't bloody help! My hearing doesn't work in the conventional way any more. I hear sounds/noise, not words. And I lip read, so I have to try and put the two together. And obviously, I can't work standing all day/lifting and carrying things. Although being pint size would probably explain that in itself, even before the crappy lungs.

On top of all that, it needs to be someone who knows about my CF and deafness and is willing to work around it, for example, all my hospital appointments, and whether or not they're okay with me coming in while on IVs, and when I feel too crappy to even focus yet alone go to a job. Thats even before regular days off like holidays. Some people might have amazing bosses who work around it, but a lot of these people are those who've had the same job for a while and who's health has slowly declined so they, and their boss, can slowly adapt.

It seems more stress than its worth. And I sound beyond picky. But I can hardly do a full time job when I'm currently too tired to manage the job I do at oxfam one day a week. If you add on to the fact that I have little experience in places like office jobs, I'm hardly a number one candidate. I'm more or less just bored of having very little life, and wouldn't mind being able to earn some money rather than relying on benefits, which I hate having to do.Who knows, maybe getting out, being more social, and getting into a proper routine might even help me.

I've been told as being 'disabled' can make me more desirable than others; hiring someone differently abled, to be PC, looks good for a company. It doesn't guarantee you a job though, but I don't really have much else to help. I've got average GCSEs, which are probably moot by now surely? My A levels were in health and social care, and art. Obviously helpful. I've done two college courses resulting in level 1 sign language and level 3 diploma in photography, and I've done a uni course resulting in a 2:1 degree in commercial photographic practise. Honestly I think the only thing that I have that helps is the charity stuff I've done, using systems on computers and lots of social media work.

I don't know if I'll ever find a job, it doesn't have to be perfect although in an ideal world it wouldn't be a job that crushes your soul... its something I need to look into though. Despite not working now, and having reasons for it, I'm looked down upon. Even by people in the CF community. We're all different. I'm aware people in worse health than me work every day and manage. My health probably needs to stabilise properly before I take a job. But even then, perfectly healthy people struggle to find anything, so who says I'd find something?


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