In reaction to an article I read this week...

How very unlike me to post during the week.

I just had a few things on my mind that I wanted to spew onto this blog.

First of all, I read a very good article this week about M.E./cfs which included a discussion of the controversy over the XMRV (retrovirus). I wanted to provide a link to, as well as some personal comments on the article:

http://pharmexec.findpharma.com/pharmexec/article/articleDetail.jsp?id=661633&pageID=1&sk=&date=

The things that struck me are:

• It's so true M.E./CFS is an orphaned illness, we are an orphaned group of sickies - deserted for the most part by researchers, medical practitioners and governments (who fund research).


• The phrase "It's not a death sentence, it's a life sentence" couldn't be closer to the truth. For those of us with moderate and severe M.E./cfs it is a lot like being "locked up", unable to participate in so many aspects life.


• I'm not sure if the average life expectancy of those with M.E./CFS is really 55yrs as stated in the article (although I have heard 15 years shorter than average which might explain where that number came from), but surprisingly, this doesn't really scare me. When I think of being sick for another 16 years! I think that will be quite enough, thank-you....now if I get better or improve, I'm sure I'll want a good long life, but at this level of illness I'm not so sure that after 24 years of suffering through this illness I won't be ready to move on.

Sorry, I guess I got a little morbid there...I'm not without hope that I could improve or that there might even be some treatment available someday (although at this rate I'm skeptical!!!!).

I did too much last weekend and yesterday (big surprise). Today I whipped into the grocery store quickly and was standing there feeling so sick and dizzy and weak...close to passing out - asking myself "How is this my life?". I need to take it easy the next two or three days or I'll be back in relapse mode which I definitely don't want.

I've included two photos from my retreat last weekend in this post.

Definite improvement

I've definitely improved this week. I can't believe how much better I feel. I'm back to a low level of flu symptoms and ongoing fatigue, but not NEARLY as extreme or disabling as the past 6 weeks. Wow, that was hard....living in my body the last 6 weeks has been SO hard.

This week I've been able to get out of the house for an hour or two most days without consequences. I'm still needing 3 or 4 hours of bed time during the day and my usual evening on the couch, but overall, a real improvement.

I'm now on a little retreat. I needed a change of space after the long haul (six week relapse - imagine 6 weeks of influenza) so I'm taking a 2 day vacation in a little town south of Thunder Bay. The motel has a beautiful view of Lake Superior and a creek in the backyard. I hope driving here doesn't crash me, but so far so good. I'll post a few photos when I'm home.

Slight upturn

I'm tentative to report my health has taken a slight upturn. Tentative because I don't want to say I'm pulling out, only to have my hopes dashed (which has already happened twice in the last six weeks). I'm still having trouble sustaining any kind of activity without consequences, but my throat is just a tad less blistered and sore...and there have been a few hours this past week that I haven't felt as if I'm dying (or wanted to).

I went to a naturalpath on Tuesday. I've tried a variety of alternative Dr.s over the years of this illness including:

Chiropractors - 3
Energy medicine healers - 3
Acupuncturists - 2
Naturalpaths - 4
Homeopaths - 2

Naturalpaths in Ontario have four years post-graduate training. I worked with a Naturapath who shared an integrated practice with my M.E./CFS specialist and I really liked her. She realized that M.E./CFS was a serious illness and she didn't proclaim that she could cure me. In fact, at my initial consultation I was taking 12-15 supplements and she curtailed that quite a bit. I no longer see this Naturalpath as she left the practice with my specialist (who I only see once or twice a year).

Anyways, with this relapse and feeling as if I'm all alone trying to manage and understand it, I thought I'd try a Naturalpath again. So I'm currently taking some natural remedies and will add Astragalus to my regime as well. While I have no reason to believe after almost 8 years that tea or herbs will "cure" me, I hope that some natural remedies can at least support my immune system enough to be an aid in helping me through the relapse.

Dogs in my life....

I thought I'd write about something different today, my dogs.

I got my first dog in University, a black lab/golden retriever cross I named Ursa (for Bear - she looked like one). She was an awesome dog - smart, great with people. After I completed University she ended up at my parents due to the fact that I worked for residential outdoor education centres and wilderness programs. When I was finally in a place to have her back, my parents were so attached (and rightly so), they kept her.

Then when I worked for a wilderness program that ran dog sledding trips in the winter I fell in love with the sled dogs. For five falls I trained dogs and spent the winter in the woods with dogs and participants. Some friends and I even raised our own team (about 18 dogs) for an Arctic expedition. So I both lived with and worked with many dogs I loved dearly. And working with dogs is different than having a pet. It's more of a partnership. You really depend on the dogs and appreciate them in all kinds of ways. And when you see them perform these amazing feats (pulling enormous loads enthusiastically, navigating through snowstorms/white-outs, curling up in a ball in -40 temps unfazed and sleeping) you respect them at a whole new level.

A year and a half before our big Arctic trip I got Mono. It was summer and I took about 5 weeks off before attempting to go back to work. My first attempt back to work involved leading a girl -scout sea kayak trip on Lake Superior. I was SO SO sick and exhausted. My co-leaders did much of the work. At night I would lay in the tent incredibly weak with a fever raging and my spleen aching. I obviously went back to work too early. All during that first year I would attempt to work on and off, but I just couldn't maintain my strength or health. Even office work wore me out. Eventually I dropped out of the expedition and left my job "just for a while until I got better". Which I never did.

One of the hardest parts was leaving the dogs. Some of our expedition dogs I never saw again. But one husky (named Merlin) that I'd worked with at the wilderness program (and absolutely fell in love with) I'd adopted the spring before I got ill. She came with me when I left my job and home. Being ill with a dog isn't easy. Dogs need walks and attention. But in many ways Merlin saved my life. She was my best friend, emotional support, and a link to my old life. She was VERY mellow for a sled dog so she did well as the pet of a sick person.

Even on many of my sickest days, Merlin was the one who got me out of bed, even if I just walked a quarter of a block. When I moved up north again, I was alone and sick in a city where I knew no-one. Most the time I was too sick to leave my little apartment. Sometimes I would go weeks without talking to a single person face-to-face because I was just too sick to go out. Merlin made it so I wasn't alone. Sometimes I would get so depressed and sad about how sick I was that I'd write a list in my journal of the things worth living for/being happy for. Merlin topped the list each and every time.

I have so much compassion now for the elderly and chronically ill who are living alone, spending hour after hour, day after day alone. What an amazing thing to have another being with you. Merlin is one of the best things that ever happened to me. She died last July. I miss her daily.

Now I have Teagan the golden retriever. I'm living with housemates, so I don't go days without human contact. Still, I can't believe what a blessing Teagan is. I got her last June from a family who had no time for her, so her expectations for walks etc. were low. She has a yard now where she plays, and between the three of us, she gets many more walks than she did in her previous life. I've been really sick for the last 6 weeks now. When I'm too sick to really want to talk or interact with people (which is often lately) Teagan will come climb in bed with me and sleep or cuddle.

I know dogs aren't for everyone, but without the dogs that have shared my life, I can't imagine how I would have managed.

and the ridiculous relapse remains refractory

And the relapse continues. Sometimes I wonder about the usefulness of blogging. I mean on the one hand, it's an outlet for me. I've met some fellow M.E./cfs sufferers and a few people (friends and family) reading my blog have been educated about aspects of what it means to live with this illness.

On the other hand, sometimes it feels like a long, drawn-out self-indulgent complaining session. I mean how many times can I write that my throat hurts, it hurts to breath, my lymph glands feel on fire? So I won't blog about symptoms today beyond the fact that yes, I remain relapsed with an onslaught of immune system type symptoms.

I went to my NP on Thurs. There's nothing she could really do to help. She did a strept test just on the off chance we could treat my throat. Negative. She says it just looks viral. I did get my gluten blood test back which was negative. I've been tested as having a wheat allergy, but we wanted to see if I had celiac disease. I was supposed to go back on wheat for up to 12 weeks but I was so sick (vomiting) the whole time I only managed three weeks in a row before saying "screw it" and taking the test.

My CBC from December showed a low WBC (White Blood Count). My WBC (especially neutrophils) seem to be a good indicator of the severity of my condition. When I feel decent meaning at 60% function (which is still ill) my WBC hovers at around 4.0 which is low normal. When I crash or relapse, it drops a little. I think it went as low as 2.0 or something once which was moderate neutropenia. I bet if they checked it this month it would be low!

It's a gorgeous day! Maybe I'll get Joe to take me for a drive and I could take a few photos. If so, I'll post them here.