Today I am more tired than tired. The overwhelming desire to go home and sleep only defeated by the fact I have nobody to replace me at work due to the other manager being in holiday and the fact I am a stubborn arsehole and probably wouldn't let work down anyway. Like clockwork when I am in charge and have loads to do, I am ill again with a cold and have two more days before I can rest. The rotten irony of this situation is fast becoming normality, along with having sick bugs or other viral nasties when I do actually have some time off to recharge my fizzling lupus batteries. This in turn spoiling any niceties or escapism that I had planned.
The thing with lupus is, no matter how hard you try not to let it control your life - retaining some semblance of normality outside of blood tests, hospital appointments and 12 tablets a day - it still always seems to have it's way. Like a viscious circle you always end up back where you started. It's like groundhog day just without the eccentric antics of Bill Murray and that cute beaver thing.
You can ask my long suffering husband, I'm probably the most stubborn person you can meet - a trait that I no doubt inherited from my mother (I love you mum) - adamant not to be defeated or told what to do by anyone, never mind submit to an illness that thinks it's ok to try and bump me off 5 months before I get married.
My greatest fear when it comes to my health, are the potential consequences of my unwillingness to relent to the sneaky hidden agenda of my illness. Everyday I live with the thought of am I doing too much? If I do 5 days at work is that going to make me tired? If I get too stressed is that going to cause problems with my blood pressure?? Then problems again with my heart?
But what is the alternative, am I supposed to hide away, rot in my own self pity? Or carry on, even if life is that bit harder.
The way I see it is you can go down one of two paths. You can follow the easy path but walk in the dark or you can follow the hard path, with sharp bends and steep hills but is well lit so you can see ahead.
It's so easy for me to say isn't it? I recovered well and finally have a job where I'm neither made to feel like an incapable imbecile nor treated like a nobody because of illness. I'm not reliant on battling the benefits system and have a wonderful supportive family. Some people aren't so lucky, and in this situation do they have the right to feel more defeated and take the easier option?
If you don't have that support network I can see how easy it can be to slip into that negative state of mind and use your illness to blame everything that has gone wrong or a reason not to try something new. God knows I've done it! But there comes a point where you realise that life just continues on, people will get up and go to work, cars will be washed, dogs walked and the world carries on turning, it's a simple choice. Go with it and try or get left behind. You don't have to run a marathon or jump out of an aeroplane, it's changing a thought pattern and then doing, instead of just wishing.
I have lupus, it doesn't have me.
