How many chronically sick people have ‘crashes’ that last 4-10 days? Calling it ‘Post Exertional Malaise” doesn’t seem right. I have had severe M.E./CFS for 20+ years now, and these ‘crashes’ just get longer and longer. I must admit that I am pretty much bed bound. I find it difficult most days to get out of bed. Not because I’m sleepy or lazy, but I have such overwhelming fatigue that I have to really work to be able to go to the bathroom and brush my teeth for 2 minutes. When I get back in bed-I’m exhausted. My days in bed are usually not spent sleeping, but with the background noise of a tv, and occasionally looking at Instagram. Back in March, my husband retired, and we moved to another State to be closer to our children. (My 70 year old husband and sole caregiver was secretly hoping our adult children and their spouses would help out).
The move was a blur. My husband took a trip just to set up a bed, TV, chair, and stock a mini fridge next to the bed. Next he took me to the empty new house while he packed and moved everything. He made it known that I was alone in the new house (thinking my children would come check on me), but to our disappointment, they did not.
Now we have a new house filled to the eaves with boxes and boxes of who knows what. My husband needs, wants my help to show him where things go. So far on 3 occasions-I have mustered the energy to tear open boxes, sort where things should go, washed some nightgowns, etc., and started the dishwasher. After that, the days that follow are a blur. I was told I had been sleeping 20-22 hours at a time. Would wake up and yell for help to the bathroom, take my meds, drink a big glass of water, and go back to sleep for another 20+ hours, and do it all over again. After 5-6 days of this, I would be more awake during the day, but too sore to bathe, etc. By day 10, I would see the disheveled condition of the house, get up, do 2-3 hours of sorting, giving orders about what to do next, and fall back into another long crash cycle spent mostly sleeping.
Is this my fate forever? Why does so little work cause my body to retaliate in such a big way? With the way this is going, it will take 5 years to get things unboxed and put away. Is there anyone else who deals with this?
My kids (for the most part) just don’t understand that I can’t babysit their children...ever! I haven’t driven a car in 10 years because I get lost and confused. My short term memory is shot, and I can’t remember birthdays and anniversaries (let alone go buy a card and gift, wrap it and mail it to them). I’ve let my family down. My friends all disappeared. And I don’t have the energy to follow social media about my disease and sign up for live forums, podcasts, etc.
Someone tell me I’m not alone.