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.
Sunday, August 29, 2010
Tuesday, August 24, 2010
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?
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?
Monday, August 16, 2010
Neutropenia
I don't think everyone with M.E./CFS suffers from a low White Blood Count (WBC) and Neutropenia. In fact, I've only come across a couple others with this issue. My specialist thinks I have some kind of ongoing underlying viral infection either as the cause or a result (added bonus) of having M.E./CFS. Viral infection is one reason people can have a low number of neutrophils.
I had my yearly physical today and I guess my blood work had shown a lower WBC and neutrophil count then usual putting me into the neutropenia zone. Often when I'm having a flare I get a mildly low WBC (for example, 4.0 is low normal - mine will often be 3.8. Low, but not too low to worry much about).
It's low enough this time that I have mild/mod. neutropenia. I was advised if I get an infection with a fever over 101 F, I should make sure I see a Dr. asap. Go to a walk-in or emergency. It also explains why I had some kind of stomach flu last week and why I've been feeling so beat and run down esp. in the afternoons lately.
I guess the new Dr. showed my Nurse Practitioner the paper work and asked her to phone or talk to me. My Nurse Practitioner who's seen me for five years now told her that this happens occasionally. The new Dr. (who I got the sense thought CFS wasn't a very serious issue and perhaps as much psychological as physiological - see previous post) hopefully got her first taste of how this is a real physical illness. Still, I informed my NP that I'd prefer to see her from now on rather than dealing with someone who's uneducated about M.E. (It just so happens she has a family member with M.E., so she knows about how devastating it can be.)
I had my yearly physical today and I guess my blood work had shown a lower WBC and neutrophil count then usual putting me into the neutropenia zone. Often when I'm having a flare I get a mildly low WBC (for example, 4.0 is low normal - mine will often be 3.8. Low, but not too low to worry much about).
It's low enough this time that I have mild/mod. neutropenia. I was advised if I get an infection with a fever over 101 F, I should make sure I see a Dr. asap. Go to a walk-in or emergency. It also explains why I had some kind of stomach flu last week and why I've been feeling so beat and run down esp. in the afternoons lately.
I guess the new Dr. showed my Nurse Practitioner the paper work and asked her to phone or talk to me. My Nurse Practitioner who's seen me for five years now told her that this happens occasionally. The new Dr. (who I got the sense thought CFS wasn't a very serious issue and perhaps as much psychological as physiological - see previous post) hopefully got her first taste of how this is a real physical illness. Still, I informed my NP that I'd prefer to see her from now on rather than dealing with someone who's uneducated about M.E. (It just so happens she has a family member with M.E., so she knows about how devastating it can be.)
Saturday, August 7, 2010
Dealing with Doctors - especially GP's
I've had a relatively boring week. Health-wise I've been up and down with some decent days and some pretty poor ones. My throat is in a bad flare with mildly swollen glands and blisters. Probably a sign I'm pushing it a bit too hard.
I did have an introductory appointment with another new (ahhhh) GP this week. The GP I've had the last year and 1/2 (I think 4 appointments total) was OK. She wasn't especially versed on M.E./CFS, but she was open minded and humble. For example, she said to me once "There's just lots we don't know about the illness yet". She was a bit older and so I expect she'd seen people over the years with M.E. She also considered it to be a disabling chronic illness.
This new GP is fresh out of medical school and while she may be a nice person, she won't be a good Dr. for me. I'm going to try to stay away from her and go back to using my NP at that clinic as much as possible (if and when I absolutely have to see a Dr.). She said a few ignorant things about M.E./CFS which infuriated me. I'm not going to write them all here, but suffice it to say it was a disappointing appointment. But I have to remember her ignorance is not her fault necessarily. And on paper (test-wise) I look mostly healthy. In fact she said "beside chronic fatigue syndrome you're healthy". Yes, besides the fact that I've suffered flu symptoms and daily fatigue severe enough to disable me for almost 8 years I'm healthy!!!! Give me a break, who says something like that? Would she have said, "Besides the MS (or Cancer), you're healthy." ???? I highly doubt it. I'm going to stop there because I don't want to go down bitter venting street....I just need to let it go and stay away from her.
So my pole of the month (on the right) is for those of you have M.E./CFS. I'm interested in what your overall experience is with regular General Practitioners. If it's like mine it may be varied, but do your best to generalize.
I did have an introductory appointment with another new (ahhhh) GP this week. The GP I've had the last year and 1/2 (I think 4 appointments total) was OK. She wasn't especially versed on M.E./CFS, but she was open minded and humble. For example, she said to me once "There's just lots we don't know about the illness yet". She was a bit older and so I expect she'd seen people over the years with M.E. She also considered it to be a disabling chronic illness.
This new GP is fresh out of medical school and while she may be a nice person, she won't be a good Dr. for me. I'm going to try to stay away from her and go back to using my NP at that clinic as much as possible (if and when I absolutely have to see a Dr.). She said a few ignorant things about M.E./CFS which infuriated me. I'm not going to write them all here, but suffice it to say it was a disappointing appointment. But I have to remember her ignorance is not her fault necessarily. And on paper (test-wise) I look mostly healthy. In fact she said "beside chronic fatigue syndrome you're healthy". Yes, besides the fact that I've suffered flu symptoms and daily fatigue severe enough to disable me for almost 8 years I'm healthy!!!! Give me a break, who says something like that? Would she have said, "Besides the MS (or Cancer), you're healthy." ???? I highly doubt it. I'm going to stop there because I don't want to go down bitter venting street....I just need to let it go and stay away from her.
So my pole of the month (on the right) is for those of you have M.E./CFS. I'm interested in what your overall experience is with regular General Practitioners. If it's like mine it may be varied, but do your best to generalize.
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