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1 year ago

Oh yes. Duz my head in

I’ve dealt with the exhaustion and spasticity since I was first diagnosed in 2002. I had HSCT in 2017, and am doing really well. I don’t use any caffeine…. being from the PNW, that’s just crazy! I also start my day, feeding my muscles. Protein is super important! I start my day with 1/3 of my weight in protein every day (120lbs convert to 40 grams of protein). I also eat very clean, mostly organic. I make myself walk and run every errand I can. Keeping my mind busy, keeps my exhaustion down. I make a list every day of what I have to do. Keeping everything very organized, keeps me going. Schedules have made raising my son on my own, a real possibility!

1 year ago

Oh my word I struggle with fatigue SO much. I go to bed late evening (8pm) and wake up at 1pm and sometimes still need a nap! I walk maybe 50metres and need to have a break. My brain works so slowly, I take a good 5 times longer to think of answers or understand the punch line of a joke or process any infomation I hear or see. I hate it. I used to be a chronic insomniac. I once stayed awake for 5 days (apart from a few short naps which totalled to about 4 hours). I want to be able to go out all night without needing breaks or even just thinking about how tired I am. Even when I’m sitting up, after a bit I have to lay down. I’m 21 in the body of a 91 year old haha xoxo

1 year ago

Fatigue gets me badly, I’m on my own with 2 kids so I have to plan everything.i love a list and a planner lol

I went out with my son yesterday so I had no energy to tackle the washing so I’ll do that today but I won’t be able to vac etc so will do it after work tomoz maybe!! They say it’s good to do light excercise but don’t over do it listen to your body.

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