I’m having a tough week. I feel like I might have a cold. Only where would I have gotten a cold? I rarely leave the house. But everyone else does. So I could’ve gotten it from one of them. Anyway, mostly I’m just more tired than I usually am. I’m congested. My whole body aches. And I’ve picked up a cough. I’m monitoring it, don’t worry. If it gets worse, I’ll get (another) Covid-19 test.
I did manage to shower today. Should I be embarassed to say I can’t remember my last shower? I’m not. People without a chronic illness don’t understand how difficult it is to do these everyday things. Just taking a shower literally exhausts me.
I have another IV Remicade infusion on Thursday. I hate this drug. It hasn’t helped me at all. Like every drug they’ve tried, it’s hurt more than it’s helped. By now it’s been over three years of steroids, nearly two and a half years of Methotrexate and now this. I really just want to say I’m not doing it anymore. No more drugs. No more treatments. No more of anything that hasn’t helped and has only made me feel worse.
Being sick has caused so much discord in my home life and even with my friends. I can’t tell you how many people have said, “How many more treatments do you have to get?” Or, my personal favorite, “I thought you’d finished treatment.” People are okay with you being sick for about two weeks. After that, they’re ready for everything to be back to normal. I’m ready, too. But there’s no going back. There’s no cure for what’s wrong with me.
And there’s the frustration of needing/wanting to stay home. I have virtually no immune system. Every time I leave the house I’m risking an atypical infection; not just Covid. But nobody seems to get it. I just don’t want to spend time with my family anymore.
Did I mention the pain? It’s breaking me.