If you have been reading my blog, intermittently or otherwise, you know I have a lot going on medically with my brain and body. All day fatigue, pain and “cog fog” being the worst some days, but definitely not all the issues I deal with on a daily basis. For the purpose of this post those are the three I am focusing on.
If I have a “good” day, meaning I have napped, my pain level is only a 4 and I can remember simple words then I can listen to a podcast, I can usually follow what they are talking about and then completely forget about whatever it was. Later I will ask someone in person (in actual life) I vaguely remember having a conversation with them about whatever the topic was only to be told, “uh, no, we did not have that conversation”.
In the before times (before all my diagnosis not before COVID), I went to college with a major of photojournalism, I wanted to be like all those amazing journalists around the world featured in National Geographic. I am terrible at math and life happens so I didn’t finish my degree before I moved from Washington to Colorado. I had tried to transfer my course credits to a college here so I could try my hand at nursing school because biology is amazing. They would only accept two of my classes.
I use to be able to work and have great customer service skills. I used to be able to to take photos on the weekends on little trips with my husband to different places. I use to be able to write creative short stories. I used to be able to make scrapbooks for my kids. I used to be able to do genealogy without getting family lines, names, dates and information so jumbled in my head it no longer made sense to speak of it without the papers in front of me. I used to be able to do amazing research into our families lines and histories. I used to be witty.
Now, the fatigue is crippling, my daily pain level is a 5 or 6 and that is with all my pain meds and after my steroid injection for my lumbar spine (though I will note my spine pain is now only thoracic and cervical). The “Cog fog” makes me feel like I should be in assisted living and not in my house with children, a husband and three dogs that may get hurt if one of the times I accidentally leave to gas burner on and something sets a flame. I stand up in my office space and walk across the room and stand there for three or more minutes trying to figure out why I got up in the first place. Was I just changing positions because I was in pain or was there another purpose. Asking questions that I have apparently already asked multiple times.
I honestly wish I had never done stem cells because I have no way of knowing if my daily pain would still feel this bad or if it is because I had no pain for a year and then it came back all at once instead of slowly increasing over 20 years. Pain makes me short tempered and quick to yell. It is no ones fault but my own. I feel like the hulk on days my spine, hip, shoulder or nerve pain are flaring. The heat makes the nerve pain worse which means no hanging outside with my family. They can sit out on the patio and I can talk to them from the dining room window in the air conditioned house.
Trying to have a normal conversation is brutal, it takes so much energy to follow the conversation and then to find the right words that used to come easy but now I just sit there like I am day dreaming while trying to find any word that remotely relates to the word I’m actually looking for.
You can see the physical changes if a person can no longer “hide them”, which I mean maybe they can walk normal for a short period but their body will suffer later. Perhaps they are in immense pain but they are good at smiling through it and not grimacing or moving differently. We may look normal, (though I know I no longer pull it off because I always have my service dog with a brace harness or a cane) but the mask comes off eventually, it just may not be with you.