I've been visiting my friend Jodi and her husband Bill. I managed to write my final paper for my fall semester PhD course this week on top of traveling here and visiting. Jodi works during the day so I've used that time to write and rest.
Today is U.S Thanksgiving and I'm at an event at Jodi's mom - 14 people total - (but I'm upstairs resting for a bit, laying on the couch and perusing some blogs and writing this entry). I've been amazed at my health the last week or so. I'm holding up really well. Only minor flu and fatigue symptoms, which I can handle. Right now I'm fighting sore throat and sinus congestion....perhaps a cold coming on, otherwise a worsening of the M.E./cfs.
I'll write again when I'm home and resting....
To all my friends out there (online or otherwise) I hope things are going OK.
Thursday, November 26, 2009
Wednesday, November 11, 2009
The long road to recovery?
When I was first diagnosed with M.E./CFS I read some information that suggested people can be sick anywhere from six months to life (sounds like a prison sentence doesn't it?) Being an overachiever type I assumed, of course, that I would be one of the people to make a speedy recovery. I was in good physical condition, young, and I believed myself to be tough.
Seven years later I view things a bit differently, to say the least. One lesson I've learned is that some things in life we can't control. I can do everything "right" and I may still remain sick. So what are my chances for recovery? I don't know....there's still so much unknown about this illness. If it really pans out to be a retro virus, while it might be treatable, my understanding is that I'll have the retrovirus for life.
But full recovery aside, I have, and may continue to improve. I have more stamina and strength now than I did the first few years. This may be because I've truly improved, or it may be because I no longer try to push myself to live a "normal" or active life. Basically, I live in a box. For the most part, I know the limits of my box. But if I try to live outside the box, I crash....and then the box shrinks (meaning I spend a lot of time in bed). I think that my box has grown over time. This is something.
But the improvement has been very slight and over such an extended period (years not months) that sometimes it's hard for me to measure....to get real perspective on.
Well I'm done teaching my class for the fall. I just have marking to do. The class I'm taking has three weeks left (including writing another 10page paper) so I won't suffer from lack of things to do.
(If you have M.E./CFS and read this blog, vote on the pole to the right about your work/school status and/or ability.)
Seven years later I view things a bit differently, to say the least. One lesson I've learned is that some things in life we can't control. I can do everything "right" and I may still remain sick. So what are my chances for recovery? I don't know....there's still so much unknown about this illness. If it really pans out to be a retro virus, while it might be treatable, my understanding is that I'll have the retrovirus for life.
But full recovery aside, I have, and may continue to improve. I have more stamina and strength now than I did the first few years. This may be because I've truly improved, or it may be because I no longer try to push myself to live a "normal" or active life. Basically, I live in a box. For the most part, I know the limits of my box. But if I try to live outside the box, I crash....and then the box shrinks (meaning I spend a lot of time in bed). I think that my box has grown over time. This is something.
But the improvement has been very slight and over such an extended period (years not months) that sometimes it's hard for me to measure....to get real perspective on.
Well I'm done teaching my class for the fall. I just have marking to do. The class I'm taking has three weeks left (including writing another 10page paper) so I won't suffer from lack of things to do.
(If you have M.E./CFS and read this blog, vote on the pole to the right about your work/school status and/or ability.)
Sunday, November 1, 2009
Tired of being tired.....
The understatement of the century.I'm down. I'm tired of being tired. I'm tired of doing everything while feeling sick. I can't believe it's been over 7 years of this day after day! No, I'm not at my worst. Yes, I have improved overall. Yes, I am functioning enough to actually work some.
It's not that I'm not grateful for this....I guess I'm just feeling bummed, despondent. I'm feeling wiped. I feel as if I have the flu, the never ending flu. I want to crawl into bed for a week with nothing hanging over me.
I have a lot to do this month. A paper, all the marking from my course, I need to get the dog spayed before she comes into heat again.
I'm feeling a bit overwhelmed. All I want to do is lay in bed....but that's not really an option right now.
I went for a walk yesterday thinking it might help to enjoy the place where I'm living....I felt really exhausted the whole walk from step one to the last step. Still, it was nice to appreciate the beauty and watch Teagan play.
I'm going to post a few more photos (since I'm in town today and have high-speed).
Specialist Appointment
I visited my specialist Dr. Bested in Toronto.
For the first time I did the trip as an overnight. I flew down, took public transport to the appointment, spent the night in a hotel, then flew back the next morning.
Unfortunately the plane couldn't land in Thunder Bay due to low clouds so we went on to Winnipeg where I spent about 3 hours waiting. Finally we flew back to T-bay and managed to land OK.
It was a VERY exhausting trip. I tried resting in every sitting position imaginable.
My appointment wasn't too interesting.
The blood work that was supposed to be waiting never made it.
Obviously the M.E. isn't gone, however, I'm not having a major relapse or anything and over the last year I've managed quite a bit (teaching, class etc.).
We agreed I'd continue to check-in every year.
I asked about the XMRV virus to see what she thought. She does think it will turn out to be significant at least for some patients. She doesn't want to treat anyone until she can test her patients (which makes perfect sense).
I really want to be tested and try some anti-retrovirals.
My excitement at the announcement of the virus discovery at the beginning of Oct. has waned. Now I'm just guardedly hopeful that the study will be replicated soon. In the meantime I'll just manage to do as much as I can without any major crashes.
For the first time I did the trip as an overnight. I flew down, took public transport to the appointment, spent the night in a hotel, then flew back the next morning.
Unfortunately the plane couldn't land in Thunder Bay due to low clouds so we went on to Winnipeg where I spent about 3 hours waiting. Finally we flew back to T-bay and managed to land OK.
It was a VERY exhausting trip. I tried resting in every sitting position imaginable.
My appointment wasn't too interesting.
The blood work that was supposed to be waiting never made it.
Obviously the M.E. isn't gone, however, I'm not having a major relapse or anything and over the last year I've managed quite a bit (teaching, class etc.).
We agreed I'd continue to check-in every year.
I asked about the XMRV virus to see what she thought. She does think it will turn out to be significant at least for some patients. She doesn't want to treat anyone until she can test her patients (which makes perfect sense).
I really want to be tested and try some anti-retrovirals.
My excitement at the announcement of the virus discovery at the beginning of Oct. has waned. Now I'm just guardedly hopeful that the study will be replicated soon. In the meantime I'll just manage to do as much as I can without any major crashes.
Tuesday, October 27, 2009
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....
Tuesday, October 20, 2009
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).
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).
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