I want less drugs but more hugs

The latest test results are back….It’s looking good, real good. But not good enough to go off the steroids. I was hoping that this time it would be over. That I could come off them and then I can be weaned off other drugs. I know I will spend the rest of my life  on pain killers and I might have to take warfarin as well. But a lot depends on the steroid. I don’t need the steroids anymore as they have done nothing to stop the growth of the brain tumour nor have they shrunk it. It just caused me merry hell for a lot of years. Last year as you know was the last straw.

Now I am struggling to get off the major drugs, dealing with living with pain and knowing that I will have pain for the rest of my life. My back and hips hurt if I work long hours or do moving of things running up and down stairs. But I have to carry on, I can’t give in. I will not return to the state I was last year when they told me I wouldn’t walk again. So I suffer and take pain killers and Valium for the pain in my spine and hips. The painkillers also cover the constant head ache I have. Rather strange that I have a headache all the time and it’s just normal. If I don’t have the pain killers the head ache is unbearable.

So I struggle on, I have to work to pay the bills, now that I work part-time  I am losing Centrelink, waiting for housing commission, I was on the high priority last year, in need of emergency housing. But I am still waiting I have to deal with the pressure of my work expecting me to get back to 100% and work full-time but I am worried if I push it I will get ill again.  Slow steps to recovery, are too slow for the wheels of economy. If I can’t live up to my work obligations, I could lose my job. But if I push too much I might lose my life.

If I had cheap accommodation for myself and my kids that would take the burden off, struggling to pay rent, to put a roof over our heads. Its hard when you are the only parent. absent parents pay very little or nothing it’s an absolute pittance that I have received over the years for my children. We don’t live an extravagant lifestyle. We don’t waste money. No drinking or smoking in this house, and the only drugs are prescription.

All I want is a safe cheap place for me and my kids. a place I can call home, because in all honesty, we don’t know how long I will be around. I don’t intent to curl up and die. But I do know my limitations, and I know that if I am rushed into working fulltime before ready and stressing over paying rent and electricity. I will get sick and next time there will be no coming back.

I have to prepare the kids for that. Well they have been prepared for a lot of years, but it just hasn’t sunk in yet. Because mum was always there. No dad. Just mum. Mum was sick last year but she kept coming back. She got through every time they said she wouldn’t last. She got out of the wheel chair and she got home. She struggled and with the help of some family and some beautiful friends we managed. I am so far in debt but I have my kids and we have  a roof over our heads and that is something to be thankful for.


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