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.

Why doesn't this get easier?

I feel so terribly sick.

I wish somehow this got easier over the years?

I'm on the dregs of the cold - lingering dry cough and mild congestion - but I feel as bad, if not worse than when I was full virus.  I'm much more fatigued, weak, and out of breath - fluey.

But the sore throat is improved, back to M.E. normal, fever is down.

This happens to me with about 1/2 the cold viruses I catch.  I crash hard afterwards.

I saw my NP on Monday - I had a l.g. fever at the time and swollen glands.

We went over bloodwork from June where I was actually mildly anemic (low hemoglobin, low iron and low red blood cells).  Not surprising as I had gone four months with barely being able to eat.  At the time I also had mild neutropenia.

We re-did my bloodwork Monday and my WBC and neutrophils are in the normal range again (I expect as I was fighting this cold).  Also, my iron had hit low normal, and the anemia was almost gone.  I was 118 on hemoglobin and 120 is normal, albeit low/normal.

But while it's good to know that stuff is a bit better, it always bothers me that my tests don't show things terribly out-of-wack.  How is it then, that I can do the dishes (sitting on a stool) and then need a 2 hour rest in bed to recover?

Sick Week

While not unexpected, I've been pretty sick this week.  Remind me that it was worth going on that trip, OK?  I mean it was, but I'm just not feeling it today.

After getting home I was crashed, but not as bad as expected.  Then within days I came down with a nasty cold virus.  My body did not like this one from the onset and I've had a low grade fever with the cold the whole time.

Today, day 5 of the cold, my fever got to 101 F mid-day (don't ask my why I use Fahrenheit, the only time I think in Fahrenheit is body temp for some reason).  Last year around now, I was told to go to emergency if my fever was over 101 due to my neutrophils and white count being low.  At last count in May, they were low, but not as low as a year ago.

Luckily, I have managed to bring it down with some tylenol and rest so hopefully I'll be avoiding that place I detest (hospital) for now.

To boot, it's PMS time.  I feel like I've been hit with the triple bus: cold, crash and pms.  An adequate reward for tying to do something worthwhile I guess.

Oh, and I went for my 4th ever massage this week too (a short one) because my lower back was in such a state I couldn't bend over....at all.  Or roll over in bed.  Perhaps one shouldn't go from laying in bed for most of a year to camping and canoeing, even if it is very low key?

The massage therapist was amazing.  I was worried mostly about the outing, but also the aftermath of the effort. But it was worth it.  She said she only did very localized gentle work on me (my lower back was strained enough it actually had a pocket of swelling in it).  The next day, while still in pain, it was 50% better.

I'm needing some good vibes and thoughts to kick this cold and just make it through this week!

I'm supposed to see my NP in the morning to make a decision on doing a little part-time work this fall (PhD).  I was going to go for it, but at the moment I'm not feeling like doing more than sinking 10ft down and disappearing into the mattress.

Taking a Leap of Faith - Wilderness Camping Sickie Style

So I had been planning a canoe trip for a year.  Well, not a canoe trip really, more of a wilderness camping trip.  But I wanted to be in the wilderness and as I can barely walk, the only access that I could  possibly manage was by canoe.

During this past year (as well as other years) I've been laying in bed looking at maps and photos and nearby parks and wilderness areas on google earth, trying to figure what the easiest (for a sickie) most worthwhile trip could be.

I spent time making lists of what I would need.

We (my roommates and I) had planned it for a week in August to that they could help me pack, drive me there, and then pick me up.

I started packing about a month before hand.

Two weeks before the trip (after a decent July) my health took a plummet and I thought, "There is just no way, I am too sick".

It was my roommate's momentum  that got me there.  I was in tears of fear and just sick/fluiness the day before and the day of departure.  They picked up the canoe I'd rented (the lightest one I could find), and got my stuff in the car.  I was still on the edge, feeling too awful to deal.


But on the morning planned, I dragged myself to the car.  On the drive I was feeling waves of sickness but at that point my excitement was also building.  Sick or not, crashed or not, I was going.  I thought "All l have to do is paddle a few meters up the shore, drag the boat on shore, and lay down just like I do at home".

Well, to make a long story short I'm SO glad I went.  The big effort really was the drive out and back.

I spent seven nights in one of the most beautiful wilderness areas I've ever been to and that's saying something.

I did spend most my time flat....but flat on the rocks looking out over the lake and islands....flat on my back looking at a sky full of stars, or the sun setting over the horizon.  I read a lot, journaled some, napped lots, took little dips in the cold clear water of Lake Superior.

And I was barely lonely.  I had some trepidation about the solo part of the trip, but really, I've been on a long solo the whole time I've been sick. I mean I spent more than 4 years living a lone mostly trapped in my house, too sick to go out....so this was nothing.  I enjoyed the peacefulness of it, the complete lack of stress.  I didn't want to leave at the end.

I'm not going to share all the details of the experience, but I'll share some photos instead.  And I'm planning on doing it again next year already.  Sick or not, this sickie can camp.  Admittedly, I needed lots of help (all the shopping, the shuttle, and some of the packing)...but if I can muster it again next year I'll be out there again.

heading down the coast, someone's excited

sunset from the tent

there was lots of napping on rocks

gorgeous coastline

clear, blue-green water

photo session at sunrise

sunrise on the creek

caribou tracks in the sand 

favourite camping spot with a view!

'group' photo