Has anyone done a 24 hour holter monitor test with blood pressure? Will this detect Orthostatic Intollerance(OI)? For some reason I thought it was detected through tilt table testing.
I went to the walk-in (which I absolutely hate doing) after 10 days of pretty severe dizzy spells on standing or with activity.
The Dr. saw a fluid build up in my ear which explains the dizziness on moving.
My blood pressure sitting was fine, however, he thought I could be having spells of blood pressure decrease on standing.
I'm just wondering if anyone has had this test done and for what reasons?
The reason I ask is that if this test won't detect OI, then I don't want to bother with it.
Monday, May 9, 2011
Thursday, May 5, 2011
The glass box
I've been quite crashed since Saturday.
Very very fluy and weak. I've been needing at least an hour of rest after a bath. I had to sit on the floor and take breaks while folding laundry - that kind of crashed.
The OI (Orthostatic Intolerance) has been pretty bad too this week with frequent dizzy spells and multiple blackouts and near faints.
The Valtrex is causing some mild dizziness and some mild headaches.
Lots of bed time - and bed time without reading and computer....just plain rest. Probably 90% of my day horizontal presently.
I'm frustrated with being sick and just feeling so ill.
I caused this crash (I'm pretty sure). Last Saturday I went in the back yard where we (meaning my housemates) had done some major construction on the house last summer. There's all sorts of cement chunks that need to go to the dump and it's "free dump" week. On top of it all, one of my house-mates just found out he has a heart condition. So I thought I'd help by just separating a few of the smaller cement pieces from the dirt pile. Really they were small pieces, it was nothing too dramatic.
After doing a few I started getting the dizzys. I would lean down to get one and just black out so I figured I should stop.
If you have M.E you're probably thinking "Why would anyone with M.E. do such a thing?" "What was she expecting?".....sigh....I guess I just wanted to DO SOMETHING. Something to help and something even a little physical. I'm sick of living in the box.
My specialist uses the analogy of M.E. being like living in a glass box. As long as you live in the little glass box (the walls are your limits), you can do OK and avoid most crashes. However, if you try to push past your limits, breaking the walls of your box, you end up getting hurt. Well sometimes I guess I just want to smash the walls of my box all together.
Very very fluy and weak. I've been needing at least an hour of rest after a bath. I had to sit on the floor and take breaks while folding laundry - that kind of crashed.
The OI (Orthostatic Intolerance) has been pretty bad too this week with frequent dizzy spells and multiple blackouts and near faints.
The Valtrex is causing some mild dizziness and some mild headaches.
Lots of bed time - and bed time without reading and computer....just plain rest. Probably 90% of my day horizontal presently.
I'm frustrated with being sick and just feeling so ill.
I caused this crash (I'm pretty sure). Last Saturday I went in the back yard where we (meaning my housemates) had done some major construction on the house last summer. There's all sorts of cement chunks that need to go to the dump and it's "free dump" week. On top of it all, one of my house-mates just found out he has a heart condition. So I thought I'd help by just separating a few of the smaller cement pieces from the dirt pile. Really they were small pieces, it was nothing too dramatic.
After doing a few I started getting the dizzys. I would lean down to get one and just black out so I figured I should stop.
If you have M.E you're probably thinking "Why would anyone with M.E. do such a thing?" "What was she expecting?".....sigh....I guess I just wanted to DO SOMETHING. Something to help and something even a little physical. I'm sick of living in the box.
My specialist uses the analogy of M.E. being like living in a glass box. As long as you live in the little glass box (the walls are your limits), you can do OK and avoid most crashes. However, if you try to push past your limits, breaking the walls of your box, you end up getting hurt. Well sometimes I guess I just want to smash the walls of my box all together.
Thursday, April 28, 2011
Illness and self-confidence
Yesterday I found out I won an award. It's a two year PhD research fellowship from the Canadian government organization SSHRC (which stands for the Social Science and Humanities Research Council of Canada).
Of course I'm very happy. Honoured. Exited. Any way you look at it, it's a good thing.
In some ways it solves some of my issues. It's enough money to both pay tuition and live on. (Live on just, but most of us who have been scrounging and getting by on social assistance know how to live the frugal life).
I'm not sure if I will be removed from social assistance as a result, I have yet to make that call-but either way, I'm going to take the fellowship.
If I loose my social assistance and am still not well enough to make a living in 3 years, I'll just have to apply again. In the mean time, it will feel good not to be living off the government (although this is a government fellowship? hmmm).
And if I don't loose the social assistance, I'll be living above the poverty line!!!!!!
It also means I won't have to do a graduate assistantship this year. Although I've rarely had to work even near the 10 hrs a week required, the few hours I have worked will go towards PhD progress instead.
After getting the letter yesterday, phoning and emailing some people with the news, I realized I felt sick and needed to rest. Funny, getting a SSHRC didn't change the fact that I still have M.E and am sick.
In some ways I feel very undeserving of this award. Spending at least 70% of my day lying down, rarely leaving the house, feeling like I don't contribute much to society...it often makes me feel worthless.
Having spent a long winter mostly in bed, and for the most part house-bound, I find my self-confidence and self-worth is even lower than usual. Which makes it even harder to get my head around the fact that with all the amazing people I've met who are pursuing graduate studies, I'm given a fellowship???!!!! Like I said, it's hard to get my head around.
My plan: For the time being, continue with the PhD (instead of dropping out). However, I will continue to work only enough that I don't induce crashes. I will continue to work mostly at home and in bed.
I love that quotation, "the journey of a 1 000 miles begins with a single step". I will continue to take small, sometimes infinitesimal steps within the boundaries of the illness....and for now that's my plan.
HEALTH UPDATE: I'm tolerating the anti viral VALTREX well. Some minor headaches and digestive issues, but nothing unbearable. I'm up to 1 000 mg a day. I'll stay at this dose for the time being. However, I haven't seen much change in my viral symptoms. Sore throats, painful lymph glands, and low grade fevers continue, along with that feeling of illness and the chest-ache.
Saturday, April 23, 2011
What I woke up to....
I woke up this morning to a snowy scene. A couple centimeters of fresh snow. It was beautiful and not unexpected for April. It's also supposed to reach 15 C and sunny this week. This is typical for spring in the near north.
I've been doing relatively well health-wise since overcoming my third cold virus of the winter. I've also been recovering from my trip south.
Overall, my energy has been OK with milder flu symptoms. I haven't been pushing it at all.
I wake up each morning and spend 1 - 2 hours working on my research proposal (in bed). It was due a week ago (thank-you doctor's note and subsequent extension).
Then I piddle around...rest in bed, eat a little, rest, watch TV, rest, play a game or two online. Not a very exciting existence, but do-able.
No side effects yet from the anti-viral - although I'm on an extremely low dose to start.
I was feeling well enough (maybe 50%) last night that I went to a one hour choral concert with my roommate. I made it through most of it, we left before the final number - I was feeling too wiped to make it all the way through.
Today I woke up feeling like I had.....well....M.E./CFS.
Similar to a very severe case of the flu along with weakness and the shakes (from weakness). Symptoms (throat, headache, painful lymph nodes, dizzy spells) are mild compared to the flu, but malaise (sick feeling) and weakness much worse. And it hurts to breathe (like I breathed in a lot of water) as per usual with a crash.
And immediately I plummet into depression. How do I endure another day of this? Really!!?? Seriously!
I talked to my specialist about being so down this winter and she thinks it's a case of what she calls reactive depression. She thinks if we can get me feeling better, the depression will also abate. It makes sense because on the days I'm not as sick, I am able to feel hopeful....its' just these awful sick days - days when I'm especially fluey.
I've been doing relatively well health-wise since overcoming my third cold virus of the winter. I've also been recovering from my trip south.
Overall, my energy has been OK with milder flu symptoms. I haven't been pushing it at all.
I wake up each morning and spend 1 - 2 hours working on my research proposal (in bed). It was due a week ago (thank-you doctor's note and subsequent extension).
Then I piddle around...rest in bed, eat a little, rest, watch TV, rest, play a game or two online. Not a very exciting existence, but do-able.
No side effects yet from the anti-viral - although I'm on an extremely low dose to start.
I was feeling well enough (maybe 50%) last night that I went to a one hour choral concert with my roommate. I made it through most of it, we left before the final number - I was feeling too wiped to make it all the way through.
Today I woke up feeling like I had.....well....M.E./CFS.
Similar to a very severe case of the flu along with weakness and the shakes (from weakness). Symptoms (throat, headache, painful lymph nodes, dizzy spells) are mild compared to the flu, but malaise (sick feeling) and weakness much worse. And it hurts to breathe (like I breathed in a lot of water) as per usual with a crash.
And immediately I plummet into depression. How do I endure another day of this? Really!!?? Seriously!
I talked to my specialist about being so down this winter and she thinks it's a case of what she calls reactive depression. She thinks if we can get me feeling better, the depression will also abate. It makes sense because on the days I'm not as sick, I am able to feel hopeful....its' just these awful sick days - days when I'm especially fluey.
Monday, April 18, 2011
Quick update - specialist appointment
I just returned from seeing my specialist.
I have to travel to see her. While I was south, I stayed with my folks for a few days before my appointment (to rest) and afterwards (to recover) before flying home. Plus it gave me a chance to check-in and visit with my parents.
I saw my specialist last in December.
I had some bloodwork done at the end of Dec. as well. This was before my crash/relapse.
Mostly, my bloodwork was normal (which in some ways is quite frustrating considering how very sick I've been all winter).
However, a reactivated mono (epstein barr virus) infection was present as well as low globulin and a high globulin-albumin ratio. Not quite sure what that indicates but I was told to increase my protein intake significantly.
Also, my specialist gave me Valtrex (an antiviral) to take for a 3-6 month period which may help some with all my viral symptoms. I have tolerated low doses of valtrex in the past, so I hope it does help. Plus, I'm at a point where I just need to try SOMETHING! ANYTHING!
I'll blog again this week when I'm feeling a bit stronger. Lucky me, I also came down with a cold virus the first day of my trip which has me feeling extra exhausted.
Hope everyone is well.
I have to travel to see her. While I was south, I stayed with my folks for a few days before my appointment (to rest) and afterwards (to recover) before flying home. Plus it gave me a chance to check-in and visit with my parents.
I saw my specialist last in December.
I had some bloodwork done at the end of Dec. as well. This was before my crash/relapse.
Mostly, my bloodwork was normal (which in some ways is quite frustrating considering how very sick I've been all winter).
However, a reactivated mono (epstein barr virus) infection was present as well as low globulin and a high globulin-albumin ratio. Not quite sure what that indicates but I was told to increase my protein intake significantly.
Also, my specialist gave me Valtrex (an antiviral) to take for a 3-6 month period which may help some with all my viral symptoms. I have tolerated low doses of valtrex in the past, so I hope it does help. Plus, I'm at a point where I just need to try SOMETHING! ANYTHING!
I'll blog again this week when I'm feeling a bit stronger. Lucky me, I also came down with a cold virus the first day of my trip which has me feeling extra exhausted.
Hope everyone is well.
Tuesday, April 12, 2011
Invisible Awareness - April
Dominique, a woman many of us know through the blogging world has started a great site with the goal of getting stories of M.E. sufferers out there - in order to both give sufferers a voice, and create awareness.
Each month the site features someone's story. This month my story is featured. http://invisibleawareness.org/2011/04/12/march-2011-mecfs-story-gail/
If you haven't found this site yet, check out the other two well written and moving stories from February and March.
Despite being very ill at present, Dominique is still finding ways to advocate for those with M.E., an invisible yet disabling chronic illness. It's inspiring. Thanks Dominique!
You can find her blog, 4 walls and a view here: http://www.4wallsandaview.com/
Each month the site features someone's story. This month my story is featured. http://invisibleawareness.org/2011/04/12/march-2011-mecfs-story-gail/
If you haven't found this site yet, check out the other two well written and moving stories from February and March.
Despite being very ill at present, Dominique is still finding ways to advocate for those with M.E., an invisible yet disabling chronic illness. It's inspiring. Thanks Dominique!
You can find her blog, 4 walls and a view here: http://www.4wallsandaview.com/
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