I have always been careful with money, and I’ve always worked bloody hard for everything I have had and continue to have in my life. That was drummed in to me at an early age by my parents. And to be fair, that’s probably the one lesson I’ve worked hard to stick too.
I’ve never been stupid with money, blowing it on things that I really don’t need. I’ve always kept money for things that I actually do need. I would rather have money for fuel than new trainers. Those trainers can wait, I’ll save for them. That’s me, that’s just the way I’ve always been.
But fast forward to reality, a.k.a right now, the current times, and even fuel for the car is a struggle. I still work, however, due to my back and the pain I’ve had to drop to part time hours (25 hours a week). I simply cannot manage any more hours than this (believe me I have tried, and still try!)
You have no idea how gut wrenching and soul destroying not being able to work full time is, till you are put in that situation. I fought my employer and more so my body, to stay working full time hours, but in the end my body caved in and my employer was relieved. I put so much stress on my body, my back and my general health trying to grasp on to the only thing I knew. I knew how to work, and I could do it, I was damned if it was going to be ripped from my clutches. But in the end it was.
Now in the real world, everyone pays bills, has a mortgage or even rent, but now, I literally just work to pay my half of the mortgage and bills. What I make at the end of the month JUST covers the outgoings. Now I know I’m probably not the only person in the world to be in this situation, and there’s probably someone reading this saying “well at least you still have a job” – all very fair statements. But when you were a healthy human being, working all hours of the day, and having a little extra money to buy something for yourself, to having that forceably taken away from you, living from pay day to pay day just to keep a roof over your head – it’s the hardest thing I’ve ever been forced to do.
I’ve also realised that being Ill is also expensive, the constant supply of medication (which is mostly free on the NHS) the heat lotion, the cooling lotion, the clothes you now have to wear because normal clothes hurt like hell, the fuel to run to endless doctor’s appointments, the alternative treatments that cost an arm and a leg, these are just some of the things that I have to fork out for.
I can’t get any help, in the form of any benefits, because apparently as I can “sometimes” manage a shower without help I’m not “disabled” enough.
Then you get people who say “oh you should try X Y or Z”, and yes, I have tried everything you will suggest, but most of the time, I can’t actually afford to do any of them. That £50 massage session you suggested, will take me about a year to save up for.
While my health has now become a priority in many situations, I also have to be realistic in every situation.
My priority is to keep holding on to as much of my life as I can. I want to keep working for as long as I’m physically able to, and in doing so making sure I have a roof over my head is more important than any massage I can get.
Perhaps my priorities are all wrong, but I wasn’t to know that being this ill was going to cost more than I could ever imagine.