Isn’t it funny that with RA, when one thing gets fixed something else packs up? Take my hip for instance, after surgery and six weeks of recovery it’s feeling great and (touch wood) there have been no further problems. However, it seems that my body isn’t happy unless its battling something. Allow me to introduce my giant knee. It has made a grand return appearance this week and as usual, its larger than life personality is keeping me awake at night and struggling to walk during the day. Good thing I hung on to the crutches after my hip op.
I don’t know how you cannot get sick of this constant merry go round of swelling, pain and stiffness in alternate joints. It’s like a lottery pretty much every morning, guessing which joint or joints will be swollen or painful today, although you don’t win anything if you’re right. You go to bed with a sore wrist and wake up with a fat ankle... strange is all I can say.
I have thought a lot about the lottery this week... winning it in particular. Thinking about what the future may bring, I am becoming increasingly concerned about my finances. Yes, it is great having the freedom to run my own business and it is ticking over nicely but you can’t really expect to earn a wage until you are doing very well, so I haven’t relied on this as such. I suppose I always figured I would go back to full time work and earn a wage just like everyone else. As time goes on it’s becoming clear this may never happen. I am pretty much as well as I have been since my diagnosis and yet it’s still not ‘well enough’ that I could manage getting up and doing a full 8 to 9 hour day, five days a week. The thought alone makes me feel ill. I would love to be able to do this, don’t get me wrong, and not have to worry so much about money but the fact is I can’t. I can’t cope with that amount of work each day. The concentration, physical effort and consciousness it requires is more than I have to give.
I would love to say that my business will be a success and that it will one day make me the money a full time job would offer because my job is more suited to my condition. I work for myself so if I feel poorly all of a sudden or experience pain, I rest for a while and return to what I am doing when I can. This isn’t really possible in a normal day job. You can’t slip away from your desk for an hour to have a nap when you feel like it. If I feel awful in the morning, I will rest or sleep a bit longer (maybe until lunch time when the meds have kicked in) and then I will do my work... it’s possible to do this as long as I am meeting my deadlines. Again, you can’t really start work at lunchtimes whenever you feel like it in a regular job. So you see my predicament?
I love to work, it keeps me sane. But I have to be in a role that allows me to keep control of my RA. A normal job just wouldn’t allow me to do this. There isn’t enough consistency in my day to day life that makes me confident I could work the same hours, five days in a row, every week. I think back to the time a few months ago when I felt really good and was considering returning to work. Can you imagine what would have happened if rather than starting my own company I had gone to work for an employer? I would have been probably two months into my job when my hip bust. I would have been unable to work because of the pain (and I couldn’t drive anyway). In reality, I was only able to work through ‘hip gate’ due to the fact I didn’t need to leave the house (the stairs were my only obstacle). Finding out that I needed surgery would have meant another couple of months off if I was in employment. The horror of explaining this to an employer would have been too much, especially so soon into my employment.
Those of you who aren’t sufferers yourself just consider this amount of stress for a moment. Could you handle having to worry, not only about your condition constantly, but how it could affect your job and ultimately your financial situation? Could you handle the stress of having to call in sick on several occasions and not feel guilty about it?
At my last job, the stress and guilt of having to constantly explain why I couldn’t make it in to work made things worse. It made my health a lot worse actually. Stress makes RA worse, we know this, but the stress of just not knowing if tomorrow will be another sick day is and was too much. Added to that, some employers are not great with chronic conditions. They may be well within their rights to not pay you if you are sick and unable to work. What do you do in this position? You physically cannot go into work but if you don’t, you won’t get paid. You have bills and rent to pay... what do you do? Relying on others to help, or the government to hand you out some pocket money seem like the only options. But then consider the stress of constantly having to ask for help. Wouldn’t that get on top of you too? These are actually rhetorical questions on my part because the answer is yes. Yes all of the above will continue to spin out of control and bring you down until you don’t see a way out.
Many people ask me how I can be so positive in my situation. Think about it. If you had all of the above to contend with on a daily basis, along with the medications, endless doctors and specialist appointments, lack of sleep because of pain, fatigue, nausea, blah, blah... wouldn’t you just have to smile? Wouldn’t you just think... ‘you know what, life is pretty shit right now, but you’ve got to laugh’. Luck is not always on everyone’s side, but I believe a little luck will come everyone’s way eventually. Now if my little bit of luck would just hurry along...