and there's nothing much I can do about it.

Wow, I can't believe I'm still crashed! I'm starting to think this is more of a relapse than a crash. For me, crash means (usually) that I did too much, but after cutting back activity and resting extensively, I start to improve. A crash can last a day or up to 10 days (which is the longest crash I've had in years 'til now). With a relapse, my functioning decreases considerably for a longer period. It takes months to rebuild. I've had many crashes and very few relapses over the 7 1/2 years I've been ill.

I've had maybe three decent (but not great) days in over three weeks now.

Today I forced myself out of the house and took Teagan (my dog) to the dog park. I walked a little but mostly let her run around with the other dogs. The outing may have been a half hour long but I feel the equivalent of if I ran a marathon, then got run over by a truck, all on a day where I'm suffering a bad case of influenza....yah, that pretty much sums it up. And the sad thing is that I'm not exaggerating much (except the truck part, but actually having run a half marathon I'd say I feel much worse than after that).

So now I'm thinking I might actually go to the doctor or my nurse practitioner (NP). But there's really nothing they can do. For example, one year my NP ran four strep tests for my throat, but we concluded the issue there (blisters, swollen glands) is viral - hence, no viable treatment. Similarly, my CFS/ME specialist and I decided we'd try antivirals once. I was on them for 3 months but besides making me dizzy, they didn't seem to touch whatever it is I have. It's just so hard being this sick and feeling as if there's nothing I can do.

A fellow sufferer of M.E./cfs - Laurel - recently wrote a blog entry worth checking out. In it, she lists a portion of the treatments she's tried. It's amazing. I kept nodding my head as I read it:

http://dreamsatstake.blogspot.com/2010/02/treatments.html?utm_source=feedburner&utm_medium=feed&utm_campaign=Feed%3A+DreamsAtStake+%28Dreams+At+Stake%29

Wow, does that ever ring a bell. I've tried many of those same treatments and for me the list of doctors (Western, Naturopathic, Homeopathic, Chiropractic etc.) is at least as long.

So maybe I'll make a doctor appointment just to feel like I'm not facing this monster of an illness alone (I mean alone as in without medical help). And then again, maybe I'll just hang in there for another week or so and hope the relapse abates because going to the doctor and being reminded that there really isn't anything they can do is sometimes just as depressing as doing nothing but resting and waiting it out.

p.s. I'm going to start having a monthly poll on my blog (on the right).

crahsed for the last seven days.......

Well, I'm still in a crash. I think I just overdid it with the travel, then the moving and unpacking. While I sometimes crash from single events, I think this is a crash due to cumulative energy output.

On the positive side this week:

• It's been sunny almost every day - laying in bed in the afternoons the sun beams into my bedroom (south exposure).
• I read and summarized a wolf article for my independent study almost every day this week - progress albeit small.
• My friend Nancy came to visit Monday through Wednesday morning which was awesome!
• I have Olympics on cable (the first time I've had cable in years) and have been enjoying it immensely.
• The house is starting to feel like home.
• While I've been as sick or sicker than I was last week, my mental/emotional stamina has held up better.
• Joe cooked an amazing breakfast for lunch yesterday.
• And while I don't believe its healthy to compare pain, feeling this ill lately I think about how much worse it can be. I'm thankful I'm not as ill as I was during year two and three of this disease or as ill as those with severe CFS/ME....I mean honestly, I don't know how people manage mentally and emotionally?!! (I consider my case of ME/CFS to be moderate - which is still disabling at times, but I'm not completely bedridden).

Sadly:

• My viral/immune symptoms are flaring with ear, throat, chest and lymph node pain (including throat blisters again).
• My energy is worse than it's been in months. Doing simple tasks finds me short of breath and dizzy with instant lactic acid burn as well as muscle twitches and tremors.
• My motivation for continuing with the PhD program is low at present.
• (which isn't helped by the fact that) The email system at the university has been haywire for two weeks making working at home frustrating.
• Another study came out on the XMRV retrovirus and it failed to find it in the sample of CFS/ME patients tested....this really bummed me out, but having read more analysis I'm holding out hope that some study in the near future replicates the original finding from the Whittemore Peterson Institute. http://sciencenews.org/view/generic/id/48157/title/Retrovirus_might_be_culprit_in_chronic_fatigue_syndrome

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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