Update

The cold virus moved through quickly. I had two days of feeling really ill followed by a two day crash (from the cold?) where I was reminded that I hate the sick feeling of M.E. far worse than the sick feeling caused by a cold. However, both suck.

I'm still crazy busy. In fact, last week I worked 22 hours total (more than half of that at home, but still!!!). I'm in shock that I'm managing, but I'm not complaining. In the back of my mind, I sometimes wonder if I'm going to cross a line and incur a relapse, but at the same time, I want to make the most of it for now, rather than be dictated by fear. I have about five more weeks to go at this pace.

I've been in a dark place psychologically, on days where I'm feeling especially sick lately. I'm not sure if it's because I have to push through despite feeling so ill. I've been thinking things like "I just can't take this constant sick anymore." or "I feel so alone." or "How can I manage another day in this body?". Partly it's knowing that no matter how sick I am, no one to date has really been able to help. And while I know I'm quite ill, I also realize I look healthy. If I share with someone how ill I feel, the fact that I look perfectly well makes my complaint seem dramatic....so mostly I just try to suffer in silence....this only adds to my feelings of isolation.

But I don't' know if I'd be happy if I wasn't doing anything. Ultimately, I really love the teaching. I love connecting with people and feeling like I have something to offer. And the editing work too, has been really rewarding. I've learnt so much. The way things have worked out I just have a little too much on my plate right now, but that's temporary. There are only four weeks of teaching left and the editing/writing work is almost over.

I've posted a couple photos from a few weeks ago. I was trying to capture my favourite season at a nearby park.

Next week I'll post a new "poll of the month" and provide an update on my neutropenia. I have an appointment with my NP to find out if it's improved at all.

cold virus

I've got a nasty cold. The funny thing is that it took me three days before I realized/confirmed it was a cold. M.E. is such a "viral" experience for me that with the sore throat, body ache, and fatigue I thought it was just a "flare" or crash due to the fact that I've been doing so much. When the sinus infection hit yesterday afternoon/evening, I finally clued in.

I taught my class today despite the cold and made it through fine. Now I'm in bed and will stay here for a day or so. I'm feeling so so so so exhausted and sick. Hopefully I'll do my proper weekly blog entry and catch up on people's blogs by next weekend, once I'm feeling better. I hope my readers are doing well.

The Beauty of the "North"

I live in an amazingly beautiful place. Between Lake Superior (largest freshwater lake in the world), views of it's islands and peninsulas, as well as the local rocky hills, woods, creeks, rivers and inland lakes, there is natural beauty almost everywhere I look.

This time of year has become my favourite. I love the cool sunny days when the leaves are starting to turn and all the fall wildflowers are in bloom (asters, goldenrod etc). In the north (north is relative of course), the red osier dogwood leaves turn a brilliant red. I'm posting a few photos from previous years capturing the early fall days in my local region.

My love of this time of year is influenced by the fact that I have better health/more strength in the fall. I don't have to spend every minute feeling completely ill. My fall upswing seems to be here at last!! I been quite busy for me, and sometimes I wonder if I could do more/be more active other times of year as well? I question whether this yearly fall upswing is partly psychological? However, then I remind myself of times like last spring where I DID try to push myself to do more and as a result got so ill I had to spend days at a time, mostly in bed.

For me (by my standards), I've been really busy both teaching and working on an academic journal as an editorial assistant. I've been feeling stressed about everything I have to do. I need to remember just to take it day by day and not worry too much. I need to take a deep breath. As those of you who are ill know, we can't always control when a relapse or crash day will hit. Worrying about it just doesn't help.

I had a couple afternoons this past week where I just felt so ill I couldn't bear it - I didn't want to go on, I didn't want to spend another moment in this body. Luckily I know by now it's just a matter of "sticking it out" for a better day, better week. Those times when things aren't too bad. Those days that are very much worth living for.

Despite the bad afternoons, overall, I'm really happy with how I'm managing health-wise. And looking at this month's poll I have to remember to count my blessings that I function as well as I do. Yes, I have to deal with being sick and weaker than I'd like. But I DO have some functionality and I AM able to do some things.....I need to remember to be grateful for what I do have.

Feels like a new season

The temperature has dropped drastically. Summer feels over. Of course in a week it could be warm again. Also, what with the semester starting and two classes under my belt already, it feels like fall. The Monday class was sweltering hot - unbelievably hot. I was dizzy, but coped and the class went OK. Thursday I have a smaller group and it was cooler. I felt quite ill that afternoon but still manged to "rally" and I enjoyed the group and teaching that day.

One of my goals this past summer was to try to camp, hopefully somewhere wildernessy. It didn't happen. I was sicker than usual this summer and I don't think it will happen unless my health improves or I have help to make it happen (e.g. someone else does all the planning, packing, driving, everything). Maybe next year, but I'm not going to get my hopes up. My friend (and housemate) Sue did take me to a friend's house on a lake for the day. It was like a mini vacation without the camping part. We lay on the dock, took a picnic lunch, motored around the lake with the electric motorboat and I even did a super short paddle in the little solo canoe. It was a wonderful day. I crashed for a few days afterwards, however, I think it was worth it just to get out.

I have a new poll of the month up, feel free to vote.

Upcoming "busy" season and level of functioning

Generally, autumn is my healthiest season. It makes no real sense, however, almost every year since I got ill, I seem to have more energy in the fall then any other time of year. It's not looking good so far this year. I feel like my body is struggling at present. I've been dealing with some infections in my mouth as well as some boils on my body (boils are usually caused by a staph infection). It must be related to the low neutrophil count. I had an "ah ha!" moment when I read this in a MedicineNet description:

"The most common type of infections seen in neutropenic patients are caused by bacteria normally found on the skin (such as Staphylococcus aureus) or from the gastrointestinal and urinary tract.... The infections may be limited to certain areas of the body (commonly the oral cavity, genital area, and skin)".

At least I know why I'm getting these infections lately.

I start teaching tomorrow. I'll be teaching an education elective for 2 hours, 2 times a week for nine weeks. Whether or not I'm "up" for it doesn't matter to me at this point. I'm going to "rally" and do it anyways....at least for a while. The last two falls I've managed to do it.

Which brings me to thinking about level of functioning, or level of disability. I know those of us with this illness all function at different levels. Some are ill, but are still able to push themselves to work or study full time. At the other extreme, some people are so ill, they are bed-bound.

I remember trying to work full time when I first got ill. Then I tried working part-time. I kept getting sicker and sicker. I eventually had to concede that I couldn't work for a while. Now I do graduate studies part-time. I consider myself to have a moderate case of M.E. (at least right now). If I tried to work a full time sedentary job at this point, or even 20hrs a week on a fixed schedule, I am certain I would crash/relapse hard. I go through periods of being house-bound, and I spend a good part of my day laying down. Still, on a good day I can "rally" and go grocery shopping for a half hour, on a 10 min walk, sit at my desk and work for three hours, that type of thing. During a good day or week I've even gone to a 4/5 hour gathering or something similar.

It's probably confusing to people (heck it's confusing for me) because I can function pretty normally for a few hours on a good day. I can pretty easily "pass" as a healthy person. (Of course people don't see the crash afterwards where I may spend hours or days laying in bed recovering).

I'm looking forward to my fall. I'm keeping my fingers crossed that I "manage" without a major relapse because I truly enjoy teaching. I may be blogging less than usual, at least for a while.

retrovirus

Another study came out yesterday (Aug. 23rd) linking M.E./CFS to a retrovirus.

I've been following the news about this retrovirus since last October (when a study of positive association between M.E. and XMRV came out). It's been gut-wrenching, to say the least. Mostly I try hard to suppress any feelings of hopefulness about the possibility of tests and treatments for this illness and live the best life I can, despite being so ill.

Priority-wise, M.E./CFS gets an abysmal amount of money or research. I've been sick 8 years and there's barely been a dent in figuring out the illness....that is until the Science paper on the retroviral link first came out last fall.

With the paper published yesterday confirming an association with M.E. and a class of retroviruses, my mind turns towards possible testing and treatment. I even started imagining a life post M.E./CFS which I haven't done in YEARS!!!! Dangerous, yes I know.

I recently signed up to be part of the CFIDS association's Blood Bank. I've now signed consent and filled out the medical questionnaire. I'm hoping that perhaps I might end up in a clinical trial or something (SOON!!!) if I get accepted.

I want out. I want out of this illness if there is a possible way. I want to live a life free of having constant fatigue, weakness and flu symptoms!!!!!!!!!!!!!!!!!!!!

I'm even considering paying out of pocket for the blood test for XMRV at the private lab. Otherwise I may be waiting more years to know if I'm positive or not.

Of all the media articles on the release of the paper, this is perhaps my favourite: http://www.nytimes.com/2010/08/24/health/research/24fatigue.html?_r=2

Health wise I'm up and down the last two weeks. Compared to other Augusts, I'm probably a little sicker than usual. This past week I have a mouth full of canker sores. It's a minor thing, but makes it hard to eat. And they just don't seem to be healing. I wonder if the low WBC is playing a role?