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

Making Healthy Decisions

Making decisions when you're chronically ill is tough.  Here are some looming on the horizon:

- should I go back to school in the fall (means about 10 hrs a week of sedentary work from home, often done from bed).
- should I go on this camping trip I have been planning (dreaming about) for a year now. It's planned as well as a sickie can plan.
- Do I go out to lunch with a friend I haven't seen in a year?
- Should I travel to visit family in the fall, risking a relapse?

Every week I make decisions that may impact my health (fair enough, some aren't as big as these).  Sometimes I make a decision to do some activity and I pay for it royally.

For example, last summer I attended a seminar in July and got very sick.  I've been mostly housebound and often bed bound since.  Was it worth it?  Is suffering the worst flu of my life that lasted a year worth it?  I guess i have to vote no.

It's interesting what people from the outside think I should risk.  I very often hear "You should get out more", or  if I'm suffering consequences, "but it was worth it to do X right?".  Obviously they don't have to live the consequences.

That being said, sometimes I risk doing stuff and it works out fine.  This makes it even harder to make decisions about what I should and shouldn't risk doing.  It's like a roll of the dice.  I never know if and how long the aftermath will last.

And sometimes, I go down hill and I just don't know why?  When I crash or relapse I ask myself, "Was it some activity I did? Was it a stressor? Is there a virus going around?" (even when I don't get said virus, when there's one going around, the M.E. is usually worse).

July was my best month in a year, easily, hands down.

A week and 1/2 ago I went down hill.  I'm back to feeling terrible. Very very viral and fluy.  I fainted this week and have blacked out lots (without fainting).
- sore throat, referred ear pain, very heavy fluy breathing/chest ache, weakness, shakes, diarrhoea, painful lymph nodes in my arms.

I'm supposed to go camping Thurs. I'm still considering it.  If I go will I be in bed the rest of the year?  Is it worth it?  I'm in bed right now anyways.

If I'm this sick at the end of the month I will have to, once again, take another semester of medical leave....I guess that's not a hard decision to make.

And I'm just so tired.  Tired of being sick, tired of trying to make the "right" decision, the best decision for my health.  The one that maximizes pleasure and life experiences while minimizing this suffering.

And did I bring this on myself?  Was it the fact I went to MN in July and made the most of my better days last month?  Is this crash/relapse the result of an accumulation of doing more in July?