Sad

I find with this illness, the sadness comes and goes.  When I'm functioning low, feeling terribly sick, it's almost like there is no room to be sad.

I've just come through two weeks where every morning I wake up, think I might be a little improved, then an hour into my day realize it's the same heavy flu and fatigue.  It's been so challenging just to mentally get myself through the days.  At the same time, I've had little choice but to lay around all day.

Then the last two days, I finally picked up.  It was such a glorious relief yesterday when at 11am I wasn't feeling deathly ill.  So did I rest, and store up those good hours?  Did I put my energy (money) in the bank?  No, I started working on a print (I do block printing). Then in the evening, my roommate took me on a drive to a beautiful river rapid and we sat there as the sun was setting.  The aspens are brilliant yellow right now, the red osier dogwood and blueberries red, it's the peak of fall here.  The dog swam and we soaked in the view, then we drove home watching an almost full moon the whole way.  It was magical.

Today I woke and had another of these precious days....a day where all my mental energy isn't taken up  coping with the physical.  So I worked on my print again and got my hair cut (two outings in two days).  My hair has been driving me mad for a month, but I haven't had a single day where I felt up to going out for a cut.

So I should be happy.  This is freedom for me right?  But instead I'm feeling really sad.  Sad that my life is so empty.  I want to disappear.  I watch my roommates come and go, seemingly able to do what they please.  I know this isn't completely true....I mean they have to go to work and school.  They have to take care of tasky stuff like shopping and mowing the lawn (which I can't help with).  But they can also go for walks, out to movies, out for meals, shopping, driving, socializing, saunas, etc....

It's rare I can do any of these things and when I can, they are usually miserable experiences, if not during, then for days afterwards.

So there is the small sadness of the little things, but even bigger is the sadness for the larger ones.  I have no partner, haven't dated in years.  I have no children (which I really wanted).  I have no job at present, and I feel useless.  I live off the government.  The most "giving" thing I do is phone my parents weekly, or the dishes, or send an occasional letter or package.  I feel like a useless lump in the universe.

And I look to the future and have trouble hoping for or wanting anything.  I'm just sad.  And my instinct is to be alone right now.  I want to be away from people, away from everyday life and having to witness all the things I'm missing.  I'm tired of this sick body and having to lug it around.  I'm tired of people telling me I don't look sick.

To top it off, I didn't get my results from the MRI which means now I have to wait until Monday to find out if I have cancer....there, I said it.  I know it's probably not cancer, however, I don't know that for sure.  And if it is, I just want to know and get on with things.  I don't want to wait three more days with that hanging over me.

I talked to a friend who's daughter had the same MRI as me two days before and she got her results yesterday, so I'm guessing/hoping by Monday or Tuesday.

I'll post some photos of the river outing soon, there are some really nice ones.

I'm still here

I haven't felt like I have much to say, hence the week and a half since my last post.

I'm holding the status quo with health these past two weeks.
I have had some little ups and downs.  I've also been managing a few short outings a week.  I do crash a day or so later (about 36 hrs later), but then after a couple of days, I manage another little outing.

Today I had lunch with a friend which was great...but afterwards I came back to bed in tears I felt so terrible.

A good analogy of living with M.E.  is to compare energy or decent moments to money.  People with M.E. have almost no money (energy) to spend.  And for some reason, activity of any kind (phone call, visiting, lunch out, a bath, etc) costs 5X as much money for us as for a healthy person.  We are so easily depleted.  Sometimes I get sick of the fact that everything nice comes at such a great cost.

This is the week of my MRI.  I feel weird about it, like if I talk or write about it I may jinx it.  I'm not looking forward to it, but if it's like the rest of my medical past, the results will be normal or "inconclusive" anyways. I'm not looking forward to being jammed in a loud small tube and given contrast (re: toxic) for 30-45min.  Thankfully, this time next week it will be over and that will be that.

Decision made for me....how nice.

Well I decided I just may try to do some PhD work this fall.  As my one roommate will have a schedule again, I figured it might be quiet enough around here for me to both rest and fit in a few hours a week of "at home" reading and writing.

So I registered online, and then today looked into re-instating my funding.  It turns out this is something I have to do at least 8 weeks prior to starting back up.

Decision made!

After an awful week it was a big sigh of relief to be honest.  I think it was some kind of "meant to be" thing.  But then the scientist in me says, "Well, it's that you were so unenthused about  trying to work while feeling ill that you didn't do your homework".  Either way, it amounts to me having another semester of medical leave.

I've been feeling so weak and fluy.  Despite this, I have been pushing to do a few things that seem really important right now.  Nothing exorbitant, just stuff that has me out of bed an hour or two more than usual.

I had a really bad cold two weeks ago and it definitely triggered this decline.  As the cold eased up, the M.E. got worse.  It happens to me about half the time when I get a virus.

The bad sick patch is also messing with my mood as per usual (I'm feeling both very sick and very down).  And to be honest, really alone.