The ups and downs

my dorky loyal friend

Well I'm back home.  It feels nice in some ways.  I like being in my own bed.  But the travel day back and the day following were just terrible.  Overwhelming waves of sickness, weakness and the feeling of poison coursing through my body.   I didn't care if I died, I felt so sick.

But two days after my travel I picked up again.  I kept saying "This is much better, much better, I can't believe how much better I feel!"  You know, I never feel well.  I never feel healthy.  I feel as if no matter what, I am dragging a sick, heavy body around with me.  But when I'm worse or crashed, it is so severe that I almost can't take it mentally or emotionally.

While there are fluctuations in severity day to day like the ones I just experienced, there are also  fluctuations within each day.

In the morning, the OI is at it's worst.  I am dizzy with blackouts if I stand or even sit.  However, it is my best time of day M.E. wise.  I feel the least fatigued, fluey, and ill.  As the afternoon approaches I start to slide downhill and by 5 or 6 p.m., it peaks.  Two p.m. until 6 p.m. is my absolute worst time of day.  It doesn't matter if I eat, rest, or cry and scream in frustration, this is how it has been since the beginning.  Then, in the evening I start to feel it lift a little.  My point being, as I try to endure the worst of the day, I tell myself to hold on, that there is at least a little relief waiting if I can do a few more hours.

I am curious if others with M.E. have these fluctuations so I've added a poll on the right.

Lets try skijouring

While I was visiting friends, they often went skijouring with their giant black lab.  If you have never heard of skijouring, it means to be pulled behind a dog while on skis.  Here is a photo of me trying to skijour my dog Teagan in the alley behind my friends' house.

It was a 5 min ordeal.  Teagan would feel herself pull in the harness then come running back to me like "what the heck was that?"  I think she might get used to the idea if she walked in a harness more often and got the feel for it.  (Unfortunately I don't have a harness and I don't have the health to take her for a walk...I rely mostly on others for that.)  Most pet dogs are taught NOT to pull on a leash so it is a strange thing for them to get accustomed to.

It was fun to try skijouring anyways.  I was so weak, though, that I couldn't even clamp the ski onto one of the boots by myself.  And it was no surprise afterwards when I had a slew of ridiculous symptoms like leg and arm tremors, muscle shakes, and severe muscle fatigue even though I did almost nothing active in the process and the whole thing was only a few minutes of activity total.  I endured what felt like buzzing in my muscles for hours afterwards.

checking out the snow sculptures

While away, I mostly rested and did my daily PhD writing like at home; however, I did get a few outings.  One day, a good friend from my past came to visit and we went and looked at some of the snow sculptures at the local winter festival.

winter shadows

Another day, I took some photos hoping that they would inspire more art (block printmaking) in the future.

Overall, I'm so glad I made the trip to have a change of space and see old friends.  It was really hard-hitting to watch them live their lives (work, activity, volunteer) and remember that I used to do that too. The contrast was striking.  It's like everyone's life moved on while mine screeched to a stop.  I live off disability and the charity of friends.  While I remind myself often that it's not my fault....that I never wanted to be sick and mostly useless to society, it's still hard to come to terms with.

But despite being face to face with the stark contrast of well people's lives as well as my life "before" and "now", it was great to see friends.  And friends who knew me when I was busy and active and social and healthy.

It travels with you

Well I'm still having a nice restful and enjoyable time visiting friends.  One of my friends had her sled dogs here last night after a race and this morning they howled that ethereal chorus.....so primal and haunting.  It had been so long since I'd heard a sled dog choir.  Awesome.

Despite enjoying things overall, it was a much sicker week this week M.E.wise.  A reminder that when you have a chronic illness, it travels with you....hence the "chronic" I guess.  There is no escaping.  There is no escape.

I am so beyond tired today I don't want to move.  I want to sink into the mattress and never return.  I am achy and not the least bit hungry.  It hurts to breathe, my throat is raw.  I'm snuggling with the dog, hoping this day ends sooner rather than later.

There is supposed to be a storm headed our way within the next couple hours.  What better way to enjoy a snowstorm than from a warm comfortable bed right?  I'm trying to be positive, look at the bright side...not let this sick day, this drained of all energy feeling, suck me into emotional darkness.

That's my story today.