It’s 5.42am and once again I lie awake considering whether to admit defeat and get up after another restless night or try my luck for another hours shut eye. I can’t stand this. Probably one of the worst things about RA... the massively disturbed sleep pattern. I have had it probably since I was diagnosed and if I’m not awake because of pain or restlessness in my joints, I am awake because I am thinking about it. My wrist seems to be the main issue at the moment (and the ravin’ mad arms I spoke about last time).
I have got a lot on my mind at the moment I suppose. Work is top of the list. I am struggling because of my wrist and, as ever, worried about my finances and the future. I would like to look at the possibility of settling down a bit, getting our own furniture and home one day would be nice. At the moment that seems so far off because surviving off one wage is very difficult. I appreciate that my partner is so supportive of my condition he opts to cover the main living costs we incur from living together but it frustrates me that I can’t pay my own way. I always knew that starting my own business wouldn’t pay for the first year or so and I was willing to accept that but times just seem to get harder and harder. Everything’s going up and wages are not... well obviously mine is nonexistent but my partners wage hasn’t reflected the increase in living costs.
I know lots of people are in the same situation when one half of a couple are living with disease. They rely on the other person physically, emotionally and financially. It’s not fair but in most cases it can’t be helped. I have considered several times trying to seek some extra money through a little part time job but the truth is I don’t know what I would do and I am frightened about employment again. Working for myself means I don’t have to take time off for doctor’s appointments and all the other things that come with RA. I don’t have to explain to my boss why I am off sick for the four hundredth time in two years. I hate to let people down and that is what worries me the most. Committing to a job, even part time, means exactly that... you are committing your time to your employer on a regular basis and even if they did consider taking me on with my condition (as I don’t think I could lie about it or leave it unsaid) I am not sure I can commit to that. I never know how I am going to feel from one day to the next. If I wake up feeling bad or if I am in pain with what I currently do, I simply take a few hours to get right and work my schedule around my condition so that my work is always done, just at random times. I have to consider the possibility that I know further surgery is along the road somewhere, which means taking a large amount of time off if employed (probably with no pay either) and I am always scared of other things going wrong or unexpected flare ups or crumbling of joints (as I unpleasantly learned with hip gate).
How do people do it? How do you make the choice and the leap to return to work and be ready to commit to an employer? It’s such a difficult time to even find a job in this country but I know that if I was an employer I would prefer to take someone on that I can rely on rather than someone with a chronic disease so if I unfortunately feel like that then employers would too, right? It’s so frustrating when I hear that people are struggling to find work because I know there are jobs out there but its stuff they don’t want to do. The fact is, those jobs are things I physically can’t do. Part time jobs such as bar work, cleaning, manual stuff etc would be physically challenging for me so there is no point in me applying because I know I would struggle. But people who say they are desperate for money would go for these jobs to tide them over right? Well it seems not everyone wishes to go to this level to earn a living. I think I’d be quite happy doing a little bar job if nothing else came along, a sociable job that furthers your skills in customer service is how I see it. The kind of part time job I would love just never seems to be available (because the majority or roles I want to do are all full time). I love to write, be creative, organise events and many other things but you have to be willing to work long hours to get a job like that, or in the case of writing doors never seem to open for me.
I know that not everyone has a job that they enjoy doing, most people work to live and spend all week waiting for the weekend. I don’t want a job like that; I want to love what I do. I didn’t go to university for four years to end up doing something I hate every day. There should be more help for people with chronic disease, disabilities and any other health issues to give them the support they need to get back into work. The help is simply not there at the moment. The only ‘support’ people seem to get is letters telling them to get off their arses or their benefits will be stopped. Not much encouragement then.
The state of work and benefits and government support in this country makes me sick. It makes me physically angry that it is so messed up. Of course there is no one to blame, it’s all our own faults as we are told but who is going to answer to the situation of people who really want to succeed in life and earn their keep but they are not getting the help they need to do so? Simple steps to help are all it would take too. A little encouragement, maybe some form of scheme in place that supports the fact you may have to take time off so that employers are not left without your help and more physical support (adaption’s to equipment that are EASY to implement, I’ve been through the current system and its appalling, takes forever and costs employers a lot of money).
Anyway, rant over for now. Feels good to let it out, we really need to help each other and stick together I guess in these tough times. Or more people need to eat cake so I can eventually do my job full time and get paid a shed load and never have to worry again. I can dream I suppose....