Day Off!!!!

I've been thinking a lot lately about whether I've improved over time. I think the answer is yes. I just remember times in the past when I felt SO SO sick and was so incapacitated. It's not that I never feel really sick anymore, I just think my crashes and relapses occur less frequently and perhaps are slightly less intense.Something that's kind of funny, is that when I'm doing well, I think that I've improved over time. However, if I'm having a bad day or even a bad hour, I think that nothing has changed, I'm as sick as I've been for seven years.But when I look at how much work I've been doing the last few weeks (perhaps over 20hrs a week), I think I must have improved. Don't get me wrong, I really can't exercise much (very short walks where I don't increase my heart rate) and if I'm out of the house for more than 2 hours I feel terrible, but I DO think this is improvement.

For the first time in a long time, I have a day off. I handed in my paper, I taught yesterday (while feeling crashed!) and now I have a day where there's nothing hanging over me. I'm just going to enjoy being at the lake....

You notice energy expenditure a lot more when you have M.E./cfs

I haven't posted much lately. It's a combination of being busy and the dial-up. Everything takes longer with dial-up. As well, I spend a lot less time online as we need to leave the phone line open once in a while (hee hee).

I had a big paper for the class I'm taking due on Monday and for the first time in my whole scholastic career, I asked for an extension. I was sick quite a number of days last week and prepping for and teaching my class along with the weekly time commitment the class I'm taking involves has left me with little time and energy to put towards a paper.

In the summer when I attempted the intense July course I figured it was a matter of getting through it, not having a major relapse, and then my fall schedule would lighten up.

However, work-wise, my fall is no less intense than my summer. The good thing is that I only have to go to the University 2 days a week for a few hours. And even though Sue has been driving me in and picking me up I find the travel exhausting (It's a 1/2 drive from the cabin). And it adds to my "out of the house" time. I just notice that if I can do things at home and in bed or on the couch I can last A LOT longer than when I'm not at home. I don't know why being out of the house is so much more draining. I'm not really an introvert and I have no social anxiety issues or anything like that. I just think it must be that things just take more energy when I'm out - e.g. walking down a hallway, having a conversation, siting at a desk instead of laying on a couch to work. It's these little things that take energy, that before I was sick, I never noticed.

Last week while working on the paper, I once again contemplated my options. There's dropping out of the PhD, taking a medical leave, and dropping the course I'm taking and trying it again next year....For now, I decided to stick with it....but my decision to continue is precarious. Once again, I think if I make it through the fall, the winter will be a lot more low key as I'm taking an independent study and I won't be teaching.

The lake is beautiful everyday. We still don't have a house rental for November so we might be here another month. This doesn't bother me at all because the extra driving is made up for with the beauty of this place and how it is feeding my soul....

Stay tuned for my next blog where I'll discuss the break-in we had the other night. Hint: the thieves were black, furry and feasted on dog food (they would have also enjoyed the garbage if they'd grabbed it).

The Same but Different

In some ways, if the discovery of this retrovirus in people with M.E./CFS as announced on Oct. 8th turns out to be a cause (or even a result) of the illness, my life will change. Right now, the jury is out. The discovery is in the news. The same research facility that made the announcement has already done a subsequent as of yet unpublished study with even more striking results (95% of M.E./cfs patients tested positive for the retrovirus). Invariably, other researchers are attempting to replicate the findings. I expect it won't be long until we know for sure....I can't wait to get tested.

The reality is, however, that my illness symptoms won't change, even if the name, cause, or understanding of the illness does. What will change is how it's perceived by both me and others. For seven years I've had what feels like a never ending case of influenza - with milder symptoms than the flu except the fatigue and flu ache which are significantly more pronounced. But in all the years I've been sick, no medical professional has been able to give me more than vague speculation about what is causing the illness and no treatment to date (besides resting and pacing) has given me any relief.

Even just knowing that this awful experience has been caused or made worse by a retrovirus will be a huge improvement. I will be able to name this invisible monster.
I can understand retrovirus.
I can explain retrovirus.
They can look for a treatment for a retrovirus.
No doctor will look at me blankly when faced with my strange constellation of fatigue and immune symptoms if I'm diagnosed with a retrovirus....

bring on that test....

As to my status of late. I crashed last Thursday after a good period of feeling fairly capable and well. The crash has been dominated with my immune systems. I have the fatigue and weakness but the immune symptoms (flu ache, sore throat, painful lymph nodes, dizziness) are the most distracting symptoms the last six days.

Last night we had people over. We had a fire on the beach, played scrabble and three of us had an amazing sauna afterwards. I rallied fine for the event (after resting lots during the day), but today I've barely moved from the couch and I'm much sicker.

...rest....rest....rest....hopefully I pull out of the crash soon.

Study discovers retrovirus in many with M.E./CFS

Honestly, I'm excited about this news. Here's a link to the Scientific American article. It says that a diagnostic test for the retrovirus may be available within 6 months. I'm way too excited and hopeful about this. It's big news.

http://www.scientificamerican.com/article.cfm?id=chronic-fatigue-syndrome-retrovirus

After seven years of being sick there may actually be an answer that seems to fit.
Keep your fingers crossed and if you're a friend that reads my blog and this new "finding" doesn't pan out, be ready for me to get very depressed. (I usually don't let myself get my hopes up when a new "finding" appears, but this time they're up).

Making choices with an illness that fluctuates....

I find that I'm struggling with my choices lately. Since the move, I really haven't had a crash (until today). I've had some hours of feeling ill and tired, but nothing significant. And over the last eight or nine days I've pushed myself lots. First with the move (which was unavoidable), then prepping class and going out Sunday night to see a short film, then teaching Monday afternoon. Yesterday we sat around here most the day, although we did go get my canoe (which was at my dissertation advisor's house - she's lives on a lake not too far from here).

When I push myself and succeed, it makes me wonder if I'm generally too cautious. For example, how will I know if I'm getting better if I don't ever test my limits? However, crashes and relapses can be terrible. I had a two week one in the late summer/early fall that was pretty bad, for example. And I know of many people with the illness that have made almost a full recovery only to overdo it and end up bed-bound.

So how do I make good choices? How do I subvert my instinct to both get lots done and enjoy life to the fullest on my good days?

These are questions that after seven years I still cannot answer.

When I'm having a fairly good patch, I so easily forget the suffering - even if it was only yesterday.

I woke up today and quickly realized I was crashed. Yesterday my energy was still fairly decent but my throat and throat lymph nodes were sore and swollen. Since there is a nasty cold going around, all day I was wondering if I had the cold or whether it was the M.E.? Perhaps I should have taken it a little easier yesterday when I got the sore throat. Often a worsening of my sore throat is a warning sign or precursor to a crash.

Crash aside, I'm still enjoying the lake...In some ways I'd be happy to stay here long term although I know it's not practical. For example, Sue has been shuttling me to town two days a week (eventually she'll have a job and commitments). So I'm going to soak in life on the lake while I have it. The birch leaves as they go from green, to yellow, to gold; the crisp early morning frosts; the mist on the lake each morning, and the blue sky and grey clouds reflected on it's surface each the day.

Temporary Move

We didn't manage to find a house before Oct. 1st so we are temporarily renting a winterized cabin 30min north of town on a lake. For Oct., Sue's going to drive me in to the University two days a week since driving can really take it out of me.

I'm blogging using dial-up!!! (There is no high-speed out here). What a blast from the past. It means my blogs this month will be short.

As for my health - it's actually shocking....but I haven't crashed yet. I've had a bit of a sore throat and some pain in my arm lymph nodes, but after teaching a full afternoon last Monday (which included quite a bit of walking), then spending two to three days packing and moving with little rest, I expected a crash.

Perhaps it's because Sue and Joe packed up most my stuff and did all the carrying and lifting as well as driving everything to storage. However, I loaded quite a few boxes and bags the last days....I mean I was WAY more active than usual doing stuff that would typically cause a crash.

I'm so so happy I haven't crashed, but at the same time it's confusing. Sometimes I do something like grocery shop, or walk an extra block and I crash. Then I have the busiest few days since July (after 2 weeks of being pretty ill) and I DON'T crash??!!?!

This illness is just too hard to understand or make sense of sometimes.

I'm just going to enjoy the good days while they're here.