Just venting… there is no such thing as work life balance with this disease. I go to bed early. I wake up zombie out of bed to go to work to come home to be back in bed. I want to be more active do more things with my husband, besides go to work and come home, I feel like I don’t have a life and then there are those who tell me it can be worse you could have cancer or you could have something else that gets much worse than MS as if saying those things actually help. I try to build up my leave balances at work only to have to eat at them again because I have to take a day off like today and it makes me sad. It makes me want to cry. It makes me want to throw things because I often wonder how much longer is my work going to understand even though I do have accommodations in place. I start physical therapy this Thursday and hopefully it will help me build up my endurance so I can do more things.
Yeah, @Jenn518, I know EXACTLY how you feel. I'm sitting at my desk at work right now and I know this just isn't sustainable. My brain processes thoughts at the speed of ants through treacle, my legs are curled up under my chair in a spasm of spasticity, and it's mid-afternoon and I can't wait to crawl into bed. I now have an average of 11 hours a day that I'm ambulatory, of which 1 is spent commuting and 9 are spent in the office. That hour a day I spend with my wife isn't enough. So yeah, I commiserate. I'm going on disability soon. Not because I want to, but because I literally have no other choice.
I wish that was an option for me, but my husband is self-employed and I carry the insurance for a Family and you know our medication‘s are expensive. I have to work as long as I can for as long as I can.