I want my life back. I’m tired of what this disease has done to me. I feel like I’ve been sick forever. Today I have my Remicade infusion for my arthritis. I spend about three hours at my rheumatologist office on IV. I am a bit nervous how my body will respond with everything else going on, but I am also hopeful it might provide some relief.
On good days I don’t wake up with a headache. Or a stomachache. On good days I don’t wake up before 4am. On good days the Topamax gets me through a good portion of the morning and early afternoon so that I can get my work done. I find around 2 to 3pm it starts to wear off. This is challenging because I need to cook dinner, get the kids to activities, and help with their school work. At this point I typically just want to go to bed.
On bad days I wake with a headache and struggle through the day. I work from my bed. I alternate doing some computer work with laying flat in my back with my eyes closed trying not to be sick. I don’t enjoy food much. My stomach is sensitive and I still can’t taste. Not a lot brings me joy.
I already felt isolated as a result of my chronic illnesses. My life had slowed down in many ways already. The pandemic had increased that isolation but I was able to be active outdoors which kept my spirits up. A lot has been taken from me with this illness and depression is hitting me hard.
I have a few girlfriends I have been texting and on occasion seeing throughout the pandemic. My birthday rolled around a couple of weeks ago, and if there was one year I needed my spirits lifted it was this one. I received so many lovely well wishes, and I know I should focus on those.
But I also had a very painful conversation in a group text where it was very obvious it was completely forgotten. And that’s fine. We are in a pandemic. Everyone is struggling. However, I wish I could articulate to them how great my need was at that moment. I wish I could explain how great my abandonment feels. How misunderstood and lonely this is.
I wish I could make everyone understand.