Some people in my M.E. Facebook group have been posting photos of their “bad” days to try to raise awareness of the plight of severely affected patients.
This is one of my bad days, which is most days recently (taken after hours of shaking chills and horrible nightmares during a sunny afternoon, with a blood pressure of 76/47 even after pints of salt water and electrolytes).
What happens when a healthy person has an air purifier in their bedroom that begins to rock ever-so-slightly in the night? What about when they have a bit of a leak from their cpap? What about when the temperature in the bedroom goes up to 75 degrees? What about when the dog stretches and his nails graze the wall? What about when a line of sunlight creeps under the black-out blinds? What about when someone dares to take a step two floors below their bedroom? Probably nothing. Probably, they keep sleeping soundly. If they wake, they probably go back to sleep fairly quickly. It probably doesn’t even register.
What happens when a person with M.E. experiences these things?
This:
Zeo graph from 1am-9am showing constant “wake” (top of graph).
What happens when a healthy person only gets 2 hours of broken sleep? They are very, very tired.
What happens when a person with M.E. experiences this?
Heart racing, difficulty breathing, muscle pain, extreme stiffness, dizziness, reemergence of migraine, very blurry vision, difficulty forming coherent sentences, loss of appetite, inability to get out of bed, panic. And that’s only in the beginning of the day.
Stop haunting me now
Can’t shake you, no how…
Good morning, heartache, sit down.
First off, the photos from my garden are my effort to “notice the good things”, as my therapist encourages me to do (since I am all-consumed with the badness of ME). So, my blog might be:
…moan…bitch…whinge…
[garden-of-good-things intermission]
…whine…cry…wail…
My husband is a landscaper and has crafted an oasis here in the city. One silver lining from this illness: I have literally stopped to smell the roses (or lilies). In the past, I never took much notice of what he planted where or when. I was too busy working. Who has time to look at plants when there are P&Ls to pour through? Now, every time I take a gander through our garden, something new is happening. Since I am housebound, each new bloom or bud is breaking news. The lives of bugs and birds are my realty shows.
Also, yesterday I realised that there are ads on some of my posts (gasp!). This is WordPress’s way of paying their bills and is not my choice. I can have a “no-ad blog“, but it costs $30/year and I really don’t want to spend the money. However, please let me know if it is really bothersome to your reader experience and I will reconsider that decision. 🙂
Rag and Bone Shop of the Heart 