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.
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