I had to move home to Kent being jobless and suffering with concussion type symptoms.
How my head felt
- Dull pain at the top of my head made
- Irritable/easily frustrated
- quickly feeling overwhelmed by too much stimulation (eg lots of things going on, being in a group of people talking)
Symptoms feeling worse with movement, using screens, watching TV, reading, being around more than a couple of people. After researching my symptoms seemed similar to what people describe as a migraine hangover – the feeling in your head after a migraine that some people sometimes experience. I tried to explain how i felt to people. For me it was similar to having had a bad nights sleep followed by a really busy day at work where you haven’t had a moments break but people have constantly wanted your attention, phoning and talking to you, with a list of many tasks that you are juggling and working hard to complete. After a day like that you get home and your brain is tired. You feel ‘frazzled’. That’s how i would feel if for example i was among a group of five people who were having a discussion.
Like most people if i have an injury i just get on with it and carry on with things as best I can. With PCS i couldn’t, the symptoms would just get worse and i’d eventually have to stop feeling overwhelmed and very aware of making my condition worse and therefore setting back my recovery.
I was living at my step dads house. I was in a bad way having given up my life in Swindon. I now had no friends nearby, no income, little independence.
I could not understand why i still had these invisible and difficult to quantify symptoms. What was i doing wrong? What could i do to make it better. Doctors and Neurologists offered little support and little advice. The only thing they could tell me was to try and keep doing things and be patient. But surely this hadn’t worked for me and my head was feeling as bad if not worse than i ever had.
My plan to get better
I resolved to spend a month as disciplined as possible. I would not move or do anything that aggravates my head. I would wake up, sit on the sofa and listen to the radio all day, move as slowly as possible with the softest footsteps when i needed to go to the toilet or make a drink. It was like being prison. Maybe it was worse as i listened to the radio and stared at the walls with no other stimulation. I spent 16 hours a day sitting still. It was horrible. I got an insight into what it is like to nearly go mad, to nearly lose your grip on reality. I didn’t want to get up in the morning and i tried to sleep as much as possible. My head was my first thought and my last thought of every day. My only pleasures were drinking coffee and my step dad arriving home from work at night.
Everything else was not important, i did not even read or respond to post. I missed friends but what could i even talk to them about anymore – i had nothing to tell them about myself, i actually had no life to talk about.
The only thing that kept me going was the hope that i would get better. I’d one day get my life back. This wasn’t even real life it was a kind of bad dream.
I do not think cutting out every possible irritation to my head worked. I did make some progress (i think) but then seemed more fragile and more easily set back from future activity. Eventually i changed tactics…