The Other Pain of Living With Myositis

I’m feeling more and more isolated and alone because of this illness. I’ve held off writing publicly about it because then there’s pity and the kids would know, but the reality is I think they’re already very aware.


I’m feeling so incredibly, painfully lonely. I don’t know what to do with the, almost, physical pain of it. Mostly I can fake it, but it’s getting harder and harder. I’m feeling more and more isolated and alone because of this illness. I’ve held off writing publicly about it because then there’s pity and the kids would know, but the reality is I think they’re already very aware. I’m just feeling lots of downs at the moment. Always fighting, never winning in spite of knowing I’m a good, deserving person. What does it all matter?

My soul is infused into my kids and they are blooming and growing and flying; I’m on the ground watching as the strings, one by one, slip loosely away, as they should. I just answered the “what does it all matter?” question. 

Here I am just rambling. I’m sorry, I just had to get it out. High school friends were getting together. The last time we had a reunion was 9 years ago; I had it at my house. I was about 3 weeks post-finalized divorce, physically healthy and ready to rebuild my life, not knowing the volume of fights to come. Now here I am, very much single and alone, sick, overweight from steroids, and totally broke. I backed out of going. I had no emotional strength to see them all this time; I knew it would leave me feeling more worthless than I already feel, as those that are going (extremely kind/good/caring people) are successful and comfortable, as they should be at this point in our lives. I just knew it would be more painful to be around them, than not. Not a self-pity party, more self-preservation, knowing the precarious emotional state I was already in. 

Please know I’m essentially okay or will be. I’ll try to get myself into counseling. Blah blah. Just tired of fighting (still trying to get benefits for disability, still trying to get courts to enforce, always trying to get doctors to cooperate) and tired of being the sick one, tired of the pain, and the itching, and the inabilities.

I will bounce back.

[zombify_post]

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