I\u2019ve been here before.<\/p>\n
Trying to figure out how to live with my disease. I have nothing but time on my hands. It can be hard to figure out what to do with myself. I sit at my desk and write until my ass burns from sitting for so long and my shoulders throb from the effort of typing with one finger. It\u2019s the writer\u2019s curse I suppose but that doesn\u2019t make it any easier to bear.<\/p>\n
I am not a person who does hobbies. I used to like to paint but that requires space and supplies not to mention ideas for what to paint. Doctor KB came up with a list of activities for me to do organized by days of the week but I\u2019ve been less than successful pulling it off. It makes me feel like a child in pre-school doing assignments for the teacher\u2019s approval. Infantilizing me. Not a good feeling.<\/p>\n
I often run out of money before social security pay day which makes the situation even worse. Going from someone who made in the high six figures to being someone who lives on a minimal fixed income is a tough blow to take. I never learned how to live on a budget from the time I was a teenager working for minimum wage at the local sandwich shop. I used to borrow money from my mother who had a little chalk board hanging on the wall in the kitchen where she\u2019d track who she lent money to. You \u201cwent up on the board\u201d when the loan was given and you\u2019d get erased once the debt was paid. My mom used to say my name should have been Crime because I didn\u2019t pay. Not funny mom. Not funny at all but entirely true.<\/p>\n
I work. That\u2019s what I do. Being medically retired is killing me. I\u2019m far too young not to have a career anymore but add that to the list of things MS has stolen from me. When I did work full-time I\u2019d often complain about the stress and the pressure of my kind of job. Being in charge of growth for a large advertising agency has pressure baked in. On top of that I had 40-some people in Pittsburgh relying on me having my shit together enough to keep the office running protecting their jobs, their livelihood. I took that part of my job most seriously. I wanted to be the kind of boss people felt safe working for. I wanted to be the kind of boss I always wanted for myself.<\/p>\n
People often ask me why I don\u2019t take on consulting gigs or freelance work but I can\u2019t be relied upon enough to take on that kind of responsibility. Far too risky that MS would once again interfere making me a risk to companies hiring me and not an asset. That\u2019s a risk I\u2019m not willing to take. Once again, MS wins.<\/p>\n
The thing is, I need to try to learn how to relax and enjoy retirement. It takes a ton of energy trying not to let MS beat me on the daily. Likely as much energy as it took me to work in my old job. And here we are. We\u2019ve come full circle on the MS hamster wheel. Challenge accepted, I suppose. What other choice is there really?<\/p>\n