Right back at it....

In my last post I wrote about my lack of learning curve when it comes to overdoing it and crashing with this illness. I get a reaction that's been termed post-exertional fatigue/malaise. This means that while doing something slightly active I can feel OK, but then later - typically 12 to 48 hours later -I "crash" with an onslaught of fatigue, weakness and flu symptoms (sore throat, painful lymph nodes, dizziness, fever, breathing/chest ache, etc).

I spent almost the entire past week feeling crashed, sick, and subsequently depressed. Then Thursday I began to pull out of it. Friday, I celebrated feeling almost back to my "normal" by spending the afternoon running around doing errands and then attending a party in the evening. I woke up Saturday with some post-exertional malaise, but not enough to keep me from doing some more unpacking of boxes and building a frame for my box spring. (I'm in desperate need of storage space, so I now have room for short boxes under the bed).

Today, I've managed to slow myself down and rest (although I did have to grab a few groceries). But really, I overdid it the last two days again and am in the process of crashing. I just don't know how to slow myself down sometimes - especially when I'm not feeling awful!

I used to be an over-achiever type - but not in a completely negative way. I LIKED being busy and productive. I know healthy people who spend a lot of time doing relaxing activities (TV watching, Internet surfing, listening to music, reading) and they're quite content. Having this illness I have learnt over time to find some things I enjoy that are less strenuous (computer, art, reading), but my true nature wants to be out cross country skiing on a day like today, or hiking in the woods with my dog....It gets frustrating when I'm punished over and over for doing one tenth of what I used to do.

The one treatment my M.E. specialist stresses the most is pacing. Intertwining periods of rest with activity...never increasing activity by more than 10% at a time. Now that I'm at least partially moved into the new house, I need to start pacing again....fighting my inner nature to be active and productive.

Over doing it...

I've done too much the last two weeks. Now I'm paying the price. I'm crashed....

Crashed means tired, weak, and flu-like....I feel like I have the flu - body ache, sore throat, painful lymph nodes, dizziness...

Sometimes I think my learning curve is limited. After seven years you think I'd learn not to push it when I'm feeling OK. But so often when I'm feeling OK I tell myself, "I must be exaggerating how bad I feel most the time, I should just buck up, toughen up and get things done". "Everyone feels bad from time to time and they're not disabled by it".

But then I crash and feel like absolute hell and ask myself "Why did I push it?", "If I hadn't pushed it I may have not crashed.", "I can't believe how sick I am!"

....then I rest and rest, take it easy, start to feel better and begin the cycle again...

On the other hand, I guess I'm glad I got a lot done during my more energetic spurt. At least now I'm unpacked enough to function in the bedroom and the office.

On top of unpacking I also worked 11 hours on the Canadian Journal of Environmental Education (which is part of my graduate assistantship this term - being an editorial assistant). I'm looking forward to learning all about how a peer reviewed journal works. The bonus is that I believe I can do most of the work from home. I think this amount of work would have been fine had it not been for moving, unpacking, the pipe epic (see previous blog) etc. I've also done 2 hrs toward my independent study this week, which while pathetic, is more than the 0 hours I did the previous two weeks!

So that's this week's update...short and sweet.

As for the crash, I'm hoping I can pull out soon - it's been 2 1/2 days of feeling crap so far. Mentally and emotionally I don't think I can cope with a long crash right now.

I'm posting two photos here of the new abode.

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an epic week

Things could always be worse. Sometimes this is an encouraging thought. I write this because I realize that what seems like an epic week could have been much worse. However, there is no way that the phrase "things went smoothly" could be applied to my week.

It started Monday when I was supposed to fly from Toronto back to Thunder Bay. I had Teagan the dog and too much luggage. The flight is about 75-90min - nothing too bad. We flew from Toronto to T-bay no problem, started to descend, then all of a sudden the plane shot back up. It turned out there was too much ice on the runway, so after circling for a while we flew to Sault Ste. Marie (about a 45min backtrack) and landed. We waited 30-60min there in the plane on the runway (one of the pilots actually went below and checked on my dog Teagan), then we were off to Winnipeg (which is 45-50min west of Thunder Bay). To make a long story short, I convinced them to let me stay in Winnipeg and take a flight the next day to T-bay. (They sent most people back on another flight to Toronto to do it all again the next day!).

It was 5pm before I got my luggage and dragged everything including the dog to the hotel (via shuttle).

So the next day it was load everything up again, shuttle to the airport, and fly about 50min back to Thunder Bay.

Then Wed. involved unpacking piles and piles of boxes which seem to be never ending. They are piled everywhere throughout the house leaving only a few small walking aisles.

Thurs. Sue and I went to the cabin (40min from town) to finish packing the remains only to find the pipes all frozen. She had a flight to catch (to a funeral) and left me while I cranked the heat and kept the wood stove burning. Of course once the cabin warmed up, several cracked pipes were spraying water - I had to frantically find all the shut off points I could and close them while the bathroom flooded, with water pooling up from under the floor and out of the walls.

Joe came to get me after dropping Sue at the airport and after about another 1/2 hour of dealing with packing, loading and pipes....well we decided to drain what we could and leave. That's when I shed a few tears (which was needed) as it had been quite the week, I was exhausted.

So this morning we get up here at the new (old) house and not a single tap in the place works - the pipes froze here!!! Can you believe it? Joe and I almost started laughing it was so ridiculous or ironic or something of the sort....

Thanks to a couple space heaters and a cranked thermostat, though, we didn't have any cracked pipe epics to deal with. There was even enough water in the Brita to make a few cups of coffee while we waited for the thaw.

We're supposed to have below -20 every night until Tues. next week, but we'll keep a space heater running at night in the freeze zone and hopefully that does the trick.

Well, I'm amazed I'm not curled up in a ball in a major relapse after this week, but really I'm not. I have a small fever and a bit of a throat-ache (the blisters are gone) so hopefully no serious repercussions of great magnitude from the stress and energy output. My arms are very weak and feel jelly-like from all the unpacking. That M.E./CFS muscle weakness that really doesn't relate to anything I had as a healthy.

And thankfully I don't have any school type work until Monday, so I have a weekend to settle in here at least a bit.

Less Blogging Lately....

Well my life has been in transition for quite a while now - hence the reason for my infrequent blogs. On top of that, my health took a dive in Dec. and really hasn't returned to where it was earlier in the fall. This isn't a huge surprise, although usually my M.E. gets worse in January or February rather than early Dec.

I think part of the reason is everything that's been going on:

1. Looking for and buying a house (this took ALOT out of me). It was both physically and emotionally draining.
2. Living 40min from town where all little outings become big ones.
3. Figuring out how to live with 2 roommates (even if they are good friends).
4. Traveling in Nov. and now Jan.
5. And now moving to the new (old) house - 2nd move in 5mo.

I head back to Thunder Bay tomorrow so today I'll be packing, saying good-byes to family etc.

I'm hoping once I'm home - and my bedroom and a work space (e.g. office) is set up, I can settle back into a workable routine involving rest, working at home, and a little social life too.

I'm in desperate need of some good solid rest....

On the M.E. front, I've been doing a little better the last week. Part of my M.E. is fairly significant sore throats for the last 7 years....however, the last couple years these have often involved blistering in the throat as well. The last two weeks now I've had white blisters in my throat.

Probably unwisely, one thing that's getting me through this bad patch is hope for a test for the XMRV retrovirus soon. I can't wait to get tested and hopefully eventually treated. I would love to have a life where I wasn't so constrained by illness.

This illness....It's getting old....

Just a short update.
I'm in southern Ontario visiting family.

Right now I'm at my Brother's visiting his family (including playing with my 5 year old niece and 4 year old nephew).

I've been feeling quite ill and fluey. I'm finding this hard to take at present. I'm not sure how to improve my mood/attitude? I'm just so tired (ha ha) of feeling so ill all the time.

At first after being diagnosed with M.E./cfs I didn't believe the diagnosis. Then I figured I'd be one of the ones that recovered quickly. Now I'm over the seven year mark and while I'm better than I was the first four, I'm still sick. Blah...

I guess now I'm holding out for some research and actual treatments. Pacing does me some good but it doesn't seem to be the cure....more of a way to manage.

I'm a renegade!

I'm laughing at myself and how reckless I feel as I sit here in the library enjoying some high-speed Internet! I've been feeling quite ill and fluey almost non-stop for over two weeks. It's been really trying both physically and mentally. On top of feeling so sick, I've also been feeling bad for being such a crank-pot around my roommates.

Because we are a 30-40min drive from town, the few times I have gone in, it's involved being shuttled around. Today I just said to myself, "I'm going to drive to town and do my own thing for an afternoon despite the consequences". So I feel like a renegade! I feel as if I've been living in a little box and I just needed to break out and screw the consequences (the crash).

I might feel differently tomorrow if and when the consequences arrive, however.

Despite being so sick, the holiday was actually quite nice. We had some relaxing times at the cabin, visited and ate some good food. The lake and the snow have been beautiful. On new years eve I was out on the lake watching the full moon rise over the trees.

Last night it dropped to below -30C. Back in the day (when I was a wilderness instructor) I would have been out leading a dog sled ski trip in this weather, now I'm in a heated cabin wrapped in blankets wearing layers of clothing. Alas, I guess it does no good to think of the old days when you have a chronic illness.