The witching hour….

Thanks to all who read my "what you can do" post in honour of M.E. awareness day May 12th.  It was  more about "what you can do" for people you know who are disabled by chronic illness. It was focused on the personal level, rather than "what you can do" for those with M.E. on a bigger scale.

Of course you could write to your representative to demand better funding for M.E., or bust myths when you hear people spouting ridiculous beliefs about those who are ill, or give money to good research that's going on.  People have started fundraisers, or run races, raising money for M.E.  Others have created awareness videos.

Moving on from awareness, I wanted to write about the "witching hour".

I consider myself to have a moderate version of M.E.  People who have severe M.E. are bed-bound, too weak to bathe themselves, some are even tube fed, and yes, some have died from it.

I have been borderline "mild"-severe just a few times, too weak to walk or stand at all, too weak to talk in more than a whisper, too sick and exhausted to even watch TV…but mostly l live in the land of moderate.

I feel great empathy for those who are worse off with this disease….It's a horrible place to be, especially since, due to lack of research and the stigma associated with the disease, the chance to get any kind of treatment or medical support is rare.  It's rare for any of us, but for those who are severe it must add to the devastation and hopelessness.

Lately, I've been riding the roller coaster of M.E.
I realize that experiencing this roller coaster is evidence that I don't have severe M.E. in that  I have days where I feel fairly decent (still mostly home-bound), and days where I can't take another moment, I feel so ill.

I wake up almost everyday lately with ideas and ambitions for my day.  Work on my PhD stuff in bed, work on a lino-cut print, do an errand, do some small things in the yard…nothing overly ambitious, just things like fill the bird feeder, or a couple weeks ago, plant the peas.

But after my 1hr - 2hr PhD session working in bed each morning, (or even if I skip this session), around noon it all goes down hill.  I have called it the "witching hour" or "turning into a pumpkin" for years.  It's like coming down with influenza, it happens fast.  And while it is a physical worsening (my immune system flares), all sorts of feelings are associated with it:

• Panic, that I didn't get much done before the witching hour set in. 
• Surprise, that all of a sudden I feel so ill and weak, while minutes earlier I wasn't feeling so bad (which is pretty amazing given I've been ill almost 13 years, and dealt with this witching hour almost every day of those 13 yrs) 
• Sadness, that I can do so little, that this illness has, and has had, so much power over my life. 
• Anger, that I have to feel so awful every day, that I can't do even a portion of the very small tasks I set myself, that my life is seemingly going to waste, that I have no way out, no pill I can take, nothing!
• Desperation, that I have the whole rest of the day to get through - too weak to do much more than lay in bed or on the couch.  Some days this is daunting and overwhelming….mindlessly boring.
• Fear, sometimes rational, sometimes not.  Especially if I have to do something (push through while ill and socialize) or cancel something due to being so ill.  And there is always the fear of a crash being relapse, that I'll feel this bad, be this disabled constantly for the next 6 weeks, instead of until tomorrow morning, or that I'll never have a good moment again.

Not always, but often, around 7p.m. the worst of the flu symptoms and weakness lift a little.  I'm not as well as first thing in the morning, but I can breathe without feeling so ill and sick, like someone scoured my lungs with steel wool.

Despite the witching hour, I do get little things accomplished.  The dishes (sitting on my stool), very very short sessions outside, an article read or summarized.  I wish I loved watching movies and TV more, but I can't tolerate too much of it so I try to keep that as my evening activity rather than watching stuff all afternoon as well.

Lately, I've also occasionally been attending a dog class (with accommodations - basically, for the most part, someone else does the dog training while I watch with my feet up), but it's been so wonderful to get out of the house and interact with other people once in a while.  While on the one hand, I think it's been negatively effecting my health, on the other hand, it has been good for my social/emotional health.

On the humorous side, there has been a lot of crying associated with this dog class.  Sometimes I cry before going (because I want so badly to attend, but feel awfully ill).  At least two times in the last few months I've sat by the door with my bag packed ready to go, sobbing, trying to garner the will power to push through.  Then sometimes I cry after going, because it was a bad choice, I was so dizzy the room just moved on it's own the whole time, or it caused an immediate and horrible crash.  Finally, there's the days I can't manage to go at all, and I cry because it sucks so much to have to miss it.

I cry for missing the dog class, but also for missing out on so much - having a job or career, doing all the outdoor sports I used to love, going for a run, having a social life, dating, having children, earning my own way in the world.  Missing a dog class can trigger all the losses that have come with this &*^% &%$##$@ illness.