When you have fibromyalgia or any ongoing illness, the grieving process doesn’t really end.
I came to a sense of acceptance years ago and have simultaneously mustered a sense of reality with a huge sense of hope.
I believe that how I live can help me significantly. But I know that even having eight hours in bed, I will not feel rested. That even when only working five hours, my neck will still hurt so much that I wake frequently, changing pillows in an effort to be comfortable.
In the beginning I soldiered through because no one had any sense of what may be wrong with me, other than the physical practitioners I tried who saw my regularly tightly coiled muscles. That either didn’t respond to treatment or only had a brief, slight window of relief.
By the time I moved to Auckland with my family for a new beginning four years ago, I was at the end of my tether. Every day was a battle. I was hanging on by a thread. I coped til 8am waiting for the painkiller, I then til 10 waiting for coffee, then til 12 for lunch break. After that it was 3pm for an energy drink, to try to combat my heavy eyelids, and 5 for home time. It was nasty. I wasn’t alive. I was coping.
Since then I’ve come leaps and bounds. But that black cloud hovers.
It swooped upon me this week.
I wish I did have the energy to work and really help with our mortgage, and still have the energy for baby and then more still for exercise and other parts of life.
Three hours of work last week has stirred up my neck. And it’s hit me again what I must cope with in order to live.
I’ll need to continually walk the tightrope in order to balance work with my baby with everything else. I’ll have to find the new level of pain I can cope with, the trade off for financial stability.
It makes me sad. As I sit here with a sore neck and a gorgeous baby whose energy levels already outweigh mine.
It would help if my family got it. But people without these issues can’t “get” it. And there are those that want to understand and those that don’t.
I am fighting for myself. I will try hard to find my balance. It’s just hard to fight the people around me in addition to the fibromyalgia and myself, because there is no one more disappointed than me.