9 years ago today, I was headed out to pick up students arriving for a wilderness course. I remember standing on the deck of the main building before I drove to the airport and telling one of my then best friends and also my boss that something was wrong. I wasn't feeling well. Of course I hopped in the van and drove off anyways.
In the airport, greeting and organizing students I felt shaky - a kind of internal tremor pulsing through my body. The airport at times was spinning and off-kilter. I was sweating.
Five days later I had a diagnosis of Mono. My life has never been the same. Since that day I've never managed to work more than a few hours a week. I've usually been home-bound and sometimes bed bound. I've felt SICK at some level every single day. Enough time has passed that I have trouble remembering what a "well" body feels like.
In reflection of this anniversary, I thought I'd post my five biggest losses, five gifts of the illness, and five hopes.
LOSSES:
1. My career or the ability to have a job and support myself.
2. My social life. Most of my friends have moved on and/or live all across the continent. It's hard to make new friends when I'm home bound most the time. I'm rarely well enough to go out. I'd love to date but can't get passed the chatting online because I'm usually too sick for outings. Because I have no workplace (virtual), I don't have the daily social acquaintances of a work place. ON top of it all, I'm often feeling too sick to want to socialize anyways.
3. My hobbies. I used to climb, paddle, travel, run, dogsled etc. I lost most my hobbies.
4. My body. I miss being able to exercise. It was my main method of relieving stress. I'd love to spend a day not feeling sick like I have the flu or suffering extreme weakness after attempting a small task. I miss my "well" body.
5. Self-worth, self-esteem. I have a terrible time feeling like I have any worth. I was raised in a Christan household with the constant message that our role in life was to be "useful". That old Calvinian work ethic. And in part, I still believe it. Feeling like I have nothing to offer the world/others is tough...something I struggle with constantly.
GIFTS:
While I would have never chosen this illness and want it to go away today, there are things I have learned from it.
1. Empathy. I used to look at others who were struggling and sometimes assume they weren't tough, were just pessimistic, or not really trying. I was supportive outwardly, but my internal dialogue was often different. When I first got sick I thought I could will myself out of my situation and if nothing else "tough" my way through it. But time after time after time it didn't work. This has given me empathy for others. I'm less likely "blame the person" for things often beyond our control e.g. illness, poverty, etc. I no longer believe in "pulling up the boot straps". I know better.
2. Aloneness. I used to hate being alone. Mostly I was busy and active every minute. Now I can sit with long periods of silence and aloneness without being lonely.
3. New hobbies. Due to slowing down I found some other hobbies/interests including art and reading for pleasure.
4. The small things. I think I appreciate small things more. Things most people with busy lives don't have time to appreciate or notice. A flower/plant growing. People walking by the window. A rain storm. Watching a bird for 20 minutes.
HOPES
1. I hope I get well. If not, I hope I improve. If not, I hope I don't live a good long life because I can't do another 2 or 3 decades of this.
2. I hope they find the cause and some useful treatments soon so no one else has to suffer this illness.
3. I truly hope that most the medical community, a good portion of the media, and the general public stop treating this illness like a joke. It's a terrible, disabling, often life-long condition that gets little respect and almost no research funding. It's disgusting that this illness has been around as long as it has and this goes on. I want it to change.
4. I hope they change the name of this illness - and soon.
5. I hope that year 10 is better than this last one. I hope I find a way to both minimize my symptoms some this year and also improve my outlook/attitude because I'm feeling the strain of nine years sick.
Thursday, June 16, 2011
Monday, June 13, 2011
upcoming aniversary
I am pondering my 9 year M.E. anniversary this week which has inspired me to post.
I've been away from blogging as I'm sure you've noticed. I think that the break has been good. In some ways there's just nothing new to say. I'm sick, it sucks, but there's nothing new.
There's lots going on in my life right now including my decision to attend a 4 week PhD course this summer (July) in Windsor, ON. It's not that I'm necessarily well enough. It's just that if I don't go this summer, I will need to do it next summer......and so on. I missed it last summer due to being relapsed. So I figure that the worst case scenario is that I end up laying in bed in a dorm room unable to attend. At least I will have tried.
I'm glad I'm going. I hope I'm able to pull it off. It's my final course of the PhD. If I manage it, then all I have left is my research (which is a lot, but easier to pace).
I have accommodations set up (basically the profs know I have an illness and that I may miss some classes or portions of classes). The next few weeks will involve doing as much prep for the course as I can.
I've been suffering some pretty ill, fluey days but also some better days. I have swollen glands (neck and armpits) again and some throat blisters. The days with the chest ache are worst. If I wake in the morning and it hurts to breath, I know it's going to be a rough day. I'm starting to wonder if the chest ache is actually swollen and/or painful lymphs in my chest? Just a thought.
The POTs (postural orthosatic tachycardia) comes and goes. I check it on and off (every few days I take my pulse resting then standing). I'm still dealing with plenty of dizziness mostly on standing - three blackouts today alone...but no complete faints. The blackouts are always if I'm trying to be a bit more active - like out in the garden pulling weeds.
Today my heart rates were 72 resting then after two minutes standing 116.
Later in the day 84 after 2 min standing 128. If nothing else, as the GP said, my heart is working hard just with the effort to stand - it's basically exerercise for me just to stand, crazy isn't it?
I'll post again on the 16th which is my M.E. anniversary.
I've been away from blogging as I'm sure you've noticed. I think that the break has been good. In some ways there's just nothing new to say. I'm sick, it sucks, but there's nothing new.
There's lots going on in my life right now including my decision to attend a 4 week PhD course this summer (July) in Windsor, ON. It's not that I'm necessarily well enough. It's just that if I don't go this summer, I will need to do it next summer......and so on. I missed it last summer due to being relapsed. So I figure that the worst case scenario is that I end up laying in bed in a dorm room unable to attend. At least I will have tried.
I'm glad I'm going. I hope I'm able to pull it off. It's my final course of the PhD. If I manage it, then all I have left is my research (which is a lot, but easier to pace).
I have accommodations set up (basically the profs know I have an illness and that I may miss some classes or portions of classes). The next few weeks will involve doing as much prep for the course as I can.
I've been suffering some pretty ill, fluey days but also some better days. I have swollen glands (neck and armpits) again and some throat blisters. The days with the chest ache are worst. If I wake in the morning and it hurts to breath, I know it's going to be a rough day. I'm starting to wonder if the chest ache is actually swollen and/or painful lymphs in my chest? Just a thought.
The POTs (postural orthosatic tachycardia) comes and goes. I check it on and off (every few days I take my pulse resting then standing). I'm still dealing with plenty of dizziness mostly on standing - three blackouts today alone...but no complete faints. The blackouts are always if I'm trying to be a bit more active - like out in the garden pulling weeds.
Today my heart rates were 72 resting then after two minutes standing 116.
Later in the day 84 after 2 min standing 128. If nothing else, as the GP said, my heart is working hard just with the effort to stand - it's basically exerercise for me just to stand, crazy isn't it?
I'll post again on the 16th which is my M.E. anniversary.
Thursday, May 19, 2011
What came first?
I'm not functioning too well at present.
I'm still feeling really fluy and "sick" and very fatigued.
On top of it, I'm having major issues with OI (Orthostatic Intolerance).
I'm wondering if the OI is causing me to feel worse or if the OI is worse because I'm so sick as of late.
What came first, the chicken or the egg - right?
I'm trying to figure out how mainstream an understanding of OI is with clinicians.
There seem to be many conditions where people experience a drop in blood pressure after standing (pregnancy, certain drugs, long periods of bed rest) so it's not unknown.
I saw a GP at my local clinic about black outs and a fainting episode yesterday.
I told him my specialist had told me it was OI at one point. She had done a supine and standing BP quite a few years ago and had seen at least a 30pt drop in systolic BP.
He checked my heart.
Then he had me laying down and took my heart rate (HR) and blood pressure (BP).
He had me stand up (I was leaning on the table a bit but he didn't say anything) and after 2 min of standing he took my BP and HR again. I was already dizzy but he said my blood pressure hadn't dropped at all. However, my heart rate had gone from 70 to over 120 in just two minutes with the effort of standing.
He speculated it's just my body working hard due to M.E./CFS.
Sue from:
http://livewithcfs.blogspot.com/
sent me some literature from Dr. Rowe at John Hopkins on OI and having read it I realize that this is something called POTS, which is a form of OI. And while the GP said that the over 50pt raise in HR probably wouldn't cause light headedness, the literature said otherwise.
Now I've got to decide what to do.
Canada's medical system is different than some countries. We all have equal access to care, but to see a specialist or to receive testing that is non-emergency you wait - often months.
At the end of the appointment I asked the GP if he'd heard of tilt testing and he looked it up. He said he wouldn't consider it (there is none in this city) unless I went through a bunch of other tests first. I'm often hesitant to do a bunch of testing that takes time and energy only to tell me nothing has been found. Also, from the pamphlet Sue sent me, it seems that a tilt test isn't really needed to diagnose OI anyways.
So, it seems that I could go through a bunch of cardiac testing that will take months, or wait for my specialist appointment in August. She is familiar with OI and could treat me with no tests at all. It just means I have to deal with fairly severe symptoms for 2 1/2 months with self treatment until then. (Although hopefully they improve on their own).
I'm guessing either route will take about the same amount of time, but one route will involve a huge energy output on my part at a time when I'm quite ill and limited.
So this is where I am at present.
I'm going to think about it for a few days.
As for blogging, I may take a break for a while. I will still check in on the blogs I follow from time to time and I expect I will eventually return to blogging. I hope everyone is doing OK these days and thanks for your support over the couple years I've been part of this blogging community.
I'm still feeling really fluy and "sick" and very fatigued.
On top of it, I'm having major issues with OI (Orthostatic Intolerance).
I'm wondering if the OI is causing me to feel worse or if the OI is worse because I'm so sick as of late.
What came first, the chicken or the egg - right?
I'm trying to figure out how mainstream an understanding of OI is with clinicians.
There seem to be many conditions where people experience a drop in blood pressure after standing (pregnancy, certain drugs, long periods of bed rest) so it's not unknown.
I saw a GP at my local clinic about black outs and a fainting episode yesterday.
I told him my specialist had told me it was OI at one point. She had done a supine and standing BP quite a few years ago and had seen at least a 30pt drop in systolic BP.
He checked my heart.
Then he had me laying down and took my heart rate (HR) and blood pressure (BP).
He had me stand up (I was leaning on the table a bit but he didn't say anything) and after 2 min of standing he took my BP and HR again. I was already dizzy but he said my blood pressure hadn't dropped at all. However, my heart rate had gone from 70 to over 120 in just two minutes with the effort of standing.
He speculated it's just my body working hard due to M.E./CFS.
Sue from:
http://livewithcfs.blogspot.com/
sent me some literature from Dr. Rowe at John Hopkins on OI and having read it I realize that this is something called POTS, which is a form of OI. And while the GP said that the over 50pt raise in HR probably wouldn't cause light headedness, the literature said otherwise.
Now I've got to decide what to do.
Canada's medical system is different than some countries. We all have equal access to care, but to see a specialist or to receive testing that is non-emergency you wait - often months.
At the end of the appointment I asked the GP if he'd heard of tilt testing and he looked it up. He said he wouldn't consider it (there is none in this city) unless I went through a bunch of other tests first. I'm often hesitant to do a bunch of testing that takes time and energy only to tell me nothing has been found. Also, from the pamphlet Sue sent me, it seems that a tilt test isn't really needed to diagnose OI anyways.
So, it seems that I could go through a bunch of cardiac testing that will take months, or wait for my specialist appointment in August. She is familiar with OI and could treat me with no tests at all. It just means I have to deal with fairly severe symptoms for 2 1/2 months with self treatment until then. (Although hopefully they improve on their own).
I'm guessing either route will take about the same amount of time, but one route will involve a huge energy output on my part at a time when I'm quite ill and limited.
So this is where I am at present.
I'm going to think about it for a few days.
As for blogging, I may take a break for a while. I will still check in on the blogs I follow from time to time and I expect I will eventually return to blogging. I hope everyone is doing OK these days and thanks for your support over the couple years I've been part of this blogging community.
Monday, May 16, 2011
update - more OI
So after a 12 day MAJOR crash I'm feeling a tad better the last two days. Since I've had such a terrible Winter and Spring, it's almost like it wasn't a crash, more of a long, seemingly endless flu.
I think partly my system is just so run down from the disease right now, that I'm crashing much more easily. Yesterday and today I was able to sit outside a bit and pull a few weeds in the gardens. Yay!
This is the time of year where I tend to pick up. I'm hoping this is it, and that I climb back up to where I was last fall - which is mild moderate M.E. (a couple hours work at home most days with a few outings a week under 2 hours) instead of mild severe (housebound and laying down most the day).
I saw my NP today and we discussed the dizziness and possible OI (Orthostatic Intollerance). She checked me in the office (sitting and standing) and there was only a 2 or 3 point drop.
However, I'm still pretty sure the black-outs are OI as I've had OI symptoms since the first year of M.E. They get worse when I'm crashed which I have been.
Now I have to see a Dr. this week (at my clinic) which I'm not looking forward to. Anyone have any good literature on OI and M.E. from a reputable source?
I think partly my system is just so run down from the disease right now, that I'm crashing much more easily. Yesterday and today I was able to sit outside a bit and pull a few weeds in the gardens. Yay!
This is the time of year where I tend to pick up. I'm hoping this is it, and that I climb back up to where I was last fall - which is mild moderate M.E. (a couple hours work at home most days with a few outings a week under 2 hours) instead of mild severe (housebound and laying down most the day).
I saw my NP today and we discussed the dizziness and possible OI (Orthostatic Intollerance). She checked me in the office (sitting and standing) and there was only a 2 or 3 point drop.
However, I'm still pretty sure the black-outs are OI as I've had OI symptoms since the first year of M.E. They get worse when I'm crashed which I have been.
Now I have to see a Dr. this week (at my clinic) which I'm not looking forward to. Anyone have any good literature on OI and M.E. from a reputable source?
Monday, May 9, 2011
Holter monitor w/ blood pressure anyone?
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.
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.
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.
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