Last weekend, I worked. I had a stretch of working 7 days in a row. It was taxing because of the different assignments I had each day. On day six, I woke up with a headache. My coworkers were chatting away in a group chat, which I mostly ignored. I tried all my tricks. Took my Ubrelvy, drank some coffee, tried some ice to my forehead, used some CBD, and nothing helped.
I didn’t participate in the group chat until the end of my shift. I told my coworkers about my headache and they were very sympathetic. Some tried to give advice, some just commiserated. One of them told me to just go lay down, but I had an hour left of work and we were swamped.
By day 7, my headache had resolved. But, the neuro-fatigue kicked in. I wasn’t as productive as I could have been. Our manager eventually signed on at the end of the shift and asked everyone to stay and help out. We were swamped. I said no. I had no battery left. No more spoons. I was done. I do not feel bad for not being more of a team player. I’m no good to anyone when all my spoons have been spent. I still had a full evening of mom-ing to do after work.
The following Friday, I had a wedding. This wedding was about an hour drive, and was held in a large barn. It was on a gravel road in the middle of nowhere, and was heated by two heat lamps. I was freezing. I anticipated the cold and dressed appropriately, but I was still uncomfortable.
Something about the cold bothers my shunt site. I always wear a hat in the winter when I go out, but didn’t anticipate needing a hat at this event. I was wrong. My shunt site was prickling and eventually started burning.
Then, the DJ started. The music was ungodly loud. This is coming from someone who, pre-stroke, attended numerous rock concerts. I love music. But, this was just loud blaring noise. I couldn’t hold a conversation with anyone.
Eventually, we finished dinner and my partner said he was ready to leave. I was relieved. But, suddenly someone came up to talk to him and he wanted to stay longer. So I sat, with my head burning, and the noise getting to me, in complete misery.
After about 30 minutes, I couldn’t take it anymore. I signaled that I was going outside, even though it was cold and raining and people were smoking everywhere. It was still a more comfortable environment than inside with the blaring music. We eventually left.
People were having a good time, dancing, singing and drinking and all I wanted to do was go to bed.
These things: the headaches, the sensitivity to cold and noise, and the neuro-fatigue are all what I call The High Cost of Living. They are the prices I pay for surviving my stroke. Them, and many others.
Other things that are in The High Cost of Living category are the depression, anxiety, and PTSD symptoms. The aphasia. The need for more sleep than most people. The short term memory loss.
The personality changes. I used to be fun. I used to laugh a lot. Now, I hardly do. I’m quick to anger and easily agitated.
The alcohol addiction. This was my first sober wedding and I’m proud of myself for not drinking. I’m approaching 2.5 years since I’ve had a drink.
I survived. And that came with a price. I pay the price through The High Cost of Living items I’ve mentioned.
No one ever warned me about any of these things. No doctor or therapist or anyone every told me that these things could manifest.
As I try to navigate life post-stroke, I wonder what complications will arise as I get older. Dementia? Parkinson’s? It’s scary to think about. Most people don’t have this doom complex. But, most people haven’t been through the things I have.
Life post-stoke has been difficult. I think it will always be difficult. I’m hoping there are some better days ahead.