I can't believe I'm posting.
I've been so busy (for me)
I'm actually waiting for the "other shoe to fall" so to speak due to how much running around I've been doing the last two days to prepare for the PhD course coming up in a week.
It's strange - I'm leaving for a whole month so I'm trying to anticipate what I might need during that time. I'm trying to take a minimalist approach. On the other hand I want things to be easy for me while I'm there.
I'll be living in a dorm room that also has a full fridge and sink (no stove). I'm trying to prepare so that I'm pretty much self sufficient - so that I don't need to leave my room much if I don't have to (except for class of course).
However, I was out of the house for 3 hours yesterday and 2 today which is A LOT for me.
Tomorrow I'm not running any "out of the home" errands unless I absolutely have to. I have a friend who's willing to do stuff for me if I need (my roommates are away for two weeks).
Am I excited? Yes.
Over the last 3 weeks I read the text for the course to lessen my workload during July. This has helped pull me a little out of the depressive pit I've been in.
And for some reason I'm not too worried about managing. I'm either going to manage or I'm not. I'm not going to push hard if I'm feeling unwell. But I have very little anxiety over it. I figure if I have to call 'er quits and come home, I will.
Accommodations are set up. Now it's just a matter of giving it a go.
I'm running a fever this week (over 100 two days ago, 99.5 when I checked today), but the flueyness isn't too bad. Right now I'm just exhausted, wiped, tired....
I think I really need to take it easy these last few days.
I'll try to post little updates in July if I can.
I hope all of you are well. I've been having trouble with comments on blogger so I've been posting comments that won't go through. I'm sorry....but I'm still reading some blogs when I can.
Wish me luck!
Tuesday, June 28, 2011
Thursday, June 16, 2011
9 long years - a reflection
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.
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.
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.
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