I never really come here, but today, I'm struggling. I've been worse the last few months then I have been in a very long time. It's raining outside, delaying the building of our new house that I need so much. My son has been whisked away for the rest of the day until early evening (after dinner) by some wonderful friends and my husband is working in town for the day. So I, am alone. Alone and exhausted and aching and miserable and confused and overwhelmed and uncertain and scared.
Yesterday I was diagnosed with, on top of my ME/CFS, two other chronic conditions. Low blood pressure (hypotension) and, drum roll please... fibromyalgia. Because having one untreatable and incurable illness isn't enough.
What does having these two new diagnosis mean? Nothing really. It doesn't change things. Well, it might change things a little bit in that I'm being referred to a pain management clinic now, put on a different type of account at the doctors (cheaper and longer visit times that are auto scheduled regularly). The pain management stuff might, might, increase my quality of life by around 5%, which is better then nothing but still isn't going to let me be the person I was or want to be.
Which leads me to a new point. Rallying against the injustice, the" what was" and "can't be". I think it might be time I started to accept my life for the "what is". Take a more accepting stand. But how the hell do I do that. I'm assuming it means selling off my looms that I'm never well enough to weave on and probably 90% of my art and craft hoard. Because that is what I'm doing, hoarding pieces of a life I can't have and desperately want.
I want to be able to homeschool my son, have more kids or at the very very least drive the one I have to and from school each day and I can't even do that. I'm lucking if I'm up to sitting in the car for the trip into town. How do I accept a life that isn't what I want and I have no idea how it would look.
It would be so much easier to do this if I was a single woman with no attachments, but I'm not. I've struggled with this condition for 9 damn years, and in that time I haven't learnt a damn thing about how to live with it. I keep rolling with the punches and saving up my dreams for when I'm having a good period, an unexplainable bout of remission that can last a week or 3 months. I'm so confused.
Why is it so hard to have a life that involves getting up in the morning, feeding and dressing my family, doing the housework, taking kids to school, grocery shopping, visiting friends, going out once in a while and enjoying hobbies. Even typing those words is exhausting, let-a-lone doing any of it.
This morning I broke down on the phone and called a friend, telling her I didn't think I could manage to get through this day, she came over. I was so amazingly exhausted, and it wasn't even 9am. Someone else cleaned my house and even took away my washing. Someone else has taken my son away for the afternoon, after doing some shopping for me, making my sons lunch and now I don't even have to give him dinner, just story and bed when he returns. Today I'm lucky, today I have help but it took extreme levels of fatigue and mild levels of pain to break me down enough that I had no choice but to ask for help. AND I HATED IT!
I HATE MY LIFE
How the hell do accept it and one day even love it?
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Demonstrations in San Francisco Dec 9th and Washington D.C. Dec 10th
It's raining, it's pouring
Blog entry posted by mrs_took, Sep 10, 2013.