"Life is full of misery, loneliness, and suffering - and it's all over much too soon."
- Woody Allen
I've had a decent week. A whole decent week. Especially when I'm just laying in bed reading or on the computer, I've felt less fluey, heavy, and weak than I can remember in the past year. (My gut is in terrible shape, but that's another story).
That being said, I tried to pick up three items at the grocery store a few days ago and if felt like I was dying....I was quickly reminded that, yes, I may feel a bit better; but no, I am by no means healthy or functional in the world.
Still, I've done some short little walks with the dog as well as a little editing this week, so all and all, nothing to complain about in the big scheme of things. Since I got ill, fall always has been my best season.
Friday, October 19, 2012
Wednesday, October 10, 2012
A wrench in the plan
I am contemplating how completely different my life has been since coming down with a disabling chronic illness. Not only is my life completely different from what I ever imagined, it is also a life in stark contrast to the lives of the healthy people I know.
When I was younger (mostly in my 20's) I was very active. I had a job that involved being physically engaged (wilderness guide/outdoor educator). I had a bucket list of goals/hopes and I expected I'd be one of those "older" people I knew that still skied, mushed, ran, socialized, worked, volunteered etc.
I expected I would continue on the path of an active, productive, healthy and useful human.
But it is not just those of us that are ill that have wrenches thrown in the paths of our lives. I realize all kinds of things can happen that change the "course" of an individual's life. Death of a loved one, loss of a job, an economic depression, in some countries war, or perhaps disaster (fire, earthquake, flood, hurricane).
You think you are on one track, and all of a sudden, you are on another (with little choice in the matter).
One of the hardest things for me the first few years was loosing the identity that I had attached to my work and lifestyle. I thought being an active outdoorswoman was who I was. I "identified" with all the things I did. So when I lost my health and my career, I also felt I'd lost my identity.
As well, when you are sick and feel awful every day, when everyday is a struggle physically (which of course affects the mental and the emotional), you feel a shift in your personality....well at least I did. Sue just wrote a great post about the everyday grind of being sick here: http://livewithcfs.blogspot.ca
I am no longer active, or busy, or employed. Rather than energetic, light and friendly, I so often feel heavy and cranky and impatient. Someone recently pointed out how I'm much more of an intellectual than a people focused person. It hurt. While I've always enjoyed that intellectual side, the last 10 years my lack of sociability is by no means a choice. When social events or outings are so draining, you tend to avoid them. Being too sick to leave the house is also a huge deterrent to being social. I have even turned from an "extrovert" on personality tests to an "introvert".
I've been thinking about this in relation to a friend reunion that is happening this week. It would a be a 4 1/2 hour car journey (one way) to attend. There were some real efforts to bring it closer to where I live that didn't pan out.
I had thought I'd wrangle the rides I needed from people to attend (I can't drive far without awful consequences), but on a crash day this week as I lay in bed feeling the worst of the flu symptoms and weakness I thought to myself, "this is just not worth it to me. I don't want to be laying in a strange space, feeling like shit, wishing I were home in bed".
It wasn't the physical that most worried me, it was the emotional fall-out from the physical crash. Also, the idea of being amongst some of my favourite people, but laying in bed in another room too crashed to enjoy it. (This has happened so many times I've lost count).
You know, I would have thought that after being sick for 10 years, I'd be tougher. But instead, I feel as I have less tolerance for suffering. When I crash, I lay in bed, not wanting to move or breathe because the deep breaths hurt so much. If feel as if I have so little patience left for this illness.
The first few years I was sick I pushed hard all the time to do these things - to remain the person I was. I remember driving 20 hours (two 10hr days) after recovering from the flu no less, in order to see these same women off on their trans sub-arctic dog sled/ski expedition (the one I had helped plan and had so hoped to go on).
I remember being so sick the day after the drive that I fainted trying to get out of bed the next morning. I remember sitting in the restaurant the night before they left on their journey shaking with fatigue and fever but "toughing" it out.
But I just can't seem to do that to myself any more. I don't know why? I am so different than I once was. I am so different than an average healthy person let alone an active one. My life is so night and day from what I'd expected. I live like a 90 year old. I have so little energy. I have to plan out every little thing in order to avoid consequences. But this is my life. It's the one I've got, the one I have to navigate.
I would like to do something again. For three falls I taught at the university a few hours a week and managed OK. I loved feeling at least slightly useful. I liked the social interaction and sharing a bit of my knowledge with young adults. I found I gained energy from them.
Right now I'm mostly resting, mostly homebound. I spend the days literally resting, and also surfing online, watching movies, reading. I am doing some art again which in some ways I consider work. Especially if I can occasionally create a piece I like enough to give as a gift.
p.s. I meant to post this last week, but hdk has a great post on her blog with a poem at the end about Joy and Sorrow, and how the one, is a necessary contrast, allowing us to feel the other. Check it out: http://chronicfatiguechronichope.blogspot.ca/2012/09/peace.html
When I was younger (mostly in my 20's) I was very active. I had a job that involved being physically engaged (wilderness guide/outdoor educator). I had a bucket list of goals/hopes and I expected I'd be one of those "older" people I knew that still skied, mushed, ran, socialized, worked, volunteered etc.
I expected I would continue on the path of an active, productive, healthy and useful human.
But it is not just those of us that are ill that have wrenches thrown in the paths of our lives. I realize all kinds of things can happen that change the "course" of an individual's life. Death of a loved one, loss of a job, an economic depression, in some countries war, or perhaps disaster (fire, earthquake, flood, hurricane).
You think you are on one track, and all of a sudden, you are on another (with little choice in the matter).
One of the hardest things for me the first few years was loosing the identity that I had attached to my work and lifestyle. I thought being an active outdoorswoman was who I was. I "identified" with all the things I did. So when I lost my health and my career, I also felt I'd lost my identity.
As well, when you are sick and feel awful every day, when everyday is a struggle physically (which of course affects the mental and the emotional), you feel a shift in your personality....well at least I did. Sue just wrote a great post about the everyday grind of being sick here: http://livewithcfs.blogspot.ca
I am no longer active, or busy, or employed. Rather than energetic, light and friendly, I so often feel heavy and cranky and impatient. Someone recently pointed out how I'm much more of an intellectual than a people focused person. It hurt. While I've always enjoyed that intellectual side, the last 10 years my lack of sociability is by no means a choice. When social events or outings are so draining, you tend to avoid them. Being too sick to leave the house is also a huge deterrent to being social. I have even turned from an "extrovert" on personality tests to an "introvert".
I've been thinking about this in relation to a friend reunion that is happening this week. It would a be a 4 1/2 hour car journey (one way) to attend. There were some real efforts to bring it closer to where I live that didn't pan out.
I had thought I'd wrangle the rides I needed from people to attend (I can't drive far without awful consequences), but on a crash day this week as I lay in bed feeling the worst of the flu symptoms and weakness I thought to myself, "this is just not worth it to me. I don't want to be laying in a strange space, feeling like shit, wishing I were home in bed".
It wasn't the physical that most worried me, it was the emotional fall-out from the physical crash. Also, the idea of being amongst some of my favourite people, but laying in bed in another room too crashed to enjoy it. (This has happened so many times I've lost count).
You know, I would have thought that after being sick for 10 years, I'd be tougher. But instead, I feel as I have less tolerance for suffering. When I crash, I lay in bed, not wanting to move or breathe because the deep breaths hurt so much. If feel as if I have so little patience left for this illness.
The first few years I was sick I pushed hard all the time to do these things - to remain the person I was. I remember driving 20 hours (two 10hr days) after recovering from the flu no less, in order to see these same women off on their trans sub-arctic dog sled/ski expedition (the one I had helped plan and had so hoped to go on).
I remember being so sick the day after the drive that I fainted trying to get out of bed the next morning. I remember sitting in the restaurant the night before they left on their journey shaking with fatigue and fever but "toughing" it out.
But I just can't seem to do that to myself any more. I don't know why? I am so different than I once was. I am so different than an average healthy person let alone an active one. My life is so night and day from what I'd expected. I live like a 90 year old. I have so little energy. I have to plan out every little thing in order to avoid consequences. But this is my life. It's the one I've got, the one I have to navigate.
I would like to do something again. For three falls I taught at the university a few hours a week and managed OK. I loved feeling at least slightly useful. I liked the social interaction and sharing a bit of my knowledge with young adults. I found I gained energy from them.
Right now I'm mostly resting, mostly homebound. I spend the days literally resting, and also surfing online, watching movies, reading. I am doing some art again which in some ways I consider work. Especially if I can occasionally create a piece I like enough to give as a gift.
p.s. I meant to post this last week, but hdk has a great post on her blog with a poem at the end about Joy and Sorrow, and how the one, is a necessary contrast, allowing us to feel the other. Check it out: http://chronicfatiguechronichope.blogspot.ca/2012/09/peace.html
Wednesday, October 3, 2012
Results: More questions than answers
I have good news.
I do not have either pancreatic cancer or lymphoma! Well that's a load off, although recent research shows that one of the lymphoma drugs can really help some with M.E., so that wouldn't have been the worst thing.
My MRI results were mostly normal except what is called a mild dilatation of the pancreatic duct. What does that mean? Exactly, what does that mean? Well my NP didn't think it would cause symptoms, however, I did a little Internet research and it seems it can cause symptoms similar to pancreatitis.
The other thing (stay away from the Internet) is that people with this condition have a much higher incidence of contracting pancreatic cancer. http://jjco.oxfordjournals.org/content/32/10/407.full
Scary.
I guess we will all die at some point, that's a given. But pancreatic cancer is one of the quickest ways to go - something like 90% die within a year. Ouch.
What's the next step? They may or may not send me for another test (I didn't figure there could be any more!). It's another imaging test that is done by a surgeon. They are deferring to the gastroenterologist to decide if this next test is needed.
Also, from what I've read, I bet there will be some followup imaging in my future at least to monitor for cysts/cancer in my pancreas? I guess I don't really know. I wish I had someone with medical expertise who could shed a little light on this for me.
Otherwise, I've had a fairly decent week. I've had some more days where I've been able to do a short outing here or there. And I finished a block print. I'm almost embarrassed to show it here (as I know I can do better) but I'm sucking up my pride and posting a little photo of it anyways.
I do not have either pancreatic cancer or lymphoma! Well that's a load off, although recent research shows that one of the lymphoma drugs can really help some with M.E., so that wouldn't have been the worst thing.
My MRI results were mostly normal except what is called a mild dilatation of the pancreatic duct. What does that mean? Exactly, what does that mean? Well my NP didn't think it would cause symptoms, however, I did a little Internet research and it seems it can cause symptoms similar to pancreatitis.
The other thing (stay away from the Internet) is that people with this condition have a much higher incidence of contracting pancreatic cancer. http://jjco.oxfordjournals.org/content/32/10/407.full
Scary.
I guess we will all die at some point, that's a given. But pancreatic cancer is one of the quickest ways to go - something like 90% die within a year. Ouch.
What's the next step? They may or may not send me for another test (I didn't figure there could be any more!). It's another imaging test that is done by a surgeon. They are deferring to the gastroenterologist to decide if this next test is needed.
Also, from what I've read, I bet there will be some followup imaging in my future at least to monitor for cysts/cancer in my pancreas? I guess I don't really know. I wish I had someone with medical expertise who could shed a little light on this for me.
Otherwise, I've had a fairly decent week. I've had some more days where I've been able to do a short outing here or there. And I finished a block print. I'm almost embarrassed to show it here (as I know I can do better) but I'm sucking up my pride and posting a little photo of it anyways.
As well, I've posted some photos of the river from last week (which I sure payed for, but only two days of crash which could be worse).
Friday, September 28, 2012
Sad
I find with this illness, the sadness comes and goes. When I'm functioning low, feeling terribly sick, it's almost like there is no room to be sad.
I've just come through two weeks where every morning I wake up, think I might be a little improved, then an hour into my day realize it's the same heavy flu and fatigue. It's been so challenging just to mentally get myself through the days. At the same time, I've had little choice but to lay around all day.
Then the last two days, I finally picked up. It was such a glorious relief yesterday when at 11am I wasn't feeling deathly ill. So did I rest, and store up those good hours? Did I put my energy (money) in the bank? No, I started working on a print (I do block printing). Then in the evening, my roommate took me on a drive to a beautiful river rapid and we sat there as the sun was setting. The aspens are brilliant yellow right now, the red osier dogwood and blueberries red, it's the peak of fall here. The dog swam and we soaked in the view, then we drove home watching an almost full moon the whole way. It was magical.
Today I woke and had another of these precious days....a day where all my mental energy isn't taken up coping with the physical. So I worked on my print again and got my hair cut (two outings in two days). My hair has been driving me mad for a month, but I haven't had a single day where I felt up to going out for a cut.
So I should be happy. This is freedom for me right? But instead I'm feeling really sad. Sad that my life is so empty. I want to disappear. I watch my roommates come and go, seemingly able to do what they please. I know this isn't completely true....I mean they have to go to work and school. They have to take care of tasky stuff like shopping and mowing the lawn (which I can't help with). But they can also go for walks, out to movies, out for meals, shopping, driving, socializing, saunas, etc....
It's rare I can do any of these things and when I can, they are usually miserable experiences, if not during, then for days afterwards.
So there is the small sadness of the little things, but even bigger is the sadness for the larger ones. I have no partner, haven't dated in years. I have no children (which I really wanted). I have no job at present, and I feel useless. I live off the government. The most "giving" thing I do is phone my parents weekly, or the dishes, or send an occasional letter or package. I feel like a useless lump in the universe.
And I look to the future and have trouble hoping for or wanting anything. I'm just sad. And my instinct is to be alone right now. I want to be away from people, away from everyday life and having to witness all the things I'm missing. I'm tired of this sick body and having to lug it around. I'm tired of people telling me I don't look sick.
To top it off, I didn't get my results from the MRI which means now I have to wait until Monday to find out if I have cancer....there, I said it. I know it's probably not cancer, however, I don't know that for sure. And if it is, I just want to know and get on with things. I don't want to wait three more days with that hanging over me.
I talked to a friend who's daughter had the same MRI as me two days before and she got her results yesterday, so I'm guessing/hoping by Monday or Tuesday.
I'll post some photos of the river outing soon, there are some really nice ones.
I've just come through two weeks where every morning I wake up, think I might be a little improved, then an hour into my day realize it's the same heavy flu and fatigue. It's been so challenging just to mentally get myself through the days. At the same time, I've had little choice but to lay around all day.
Then the last two days, I finally picked up. It was such a glorious relief yesterday when at 11am I wasn't feeling deathly ill. So did I rest, and store up those good hours? Did I put my energy (money) in the bank? No, I started working on a print (I do block printing). Then in the evening, my roommate took me on a drive to a beautiful river rapid and we sat there as the sun was setting. The aspens are brilliant yellow right now, the red osier dogwood and blueberries red, it's the peak of fall here. The dog swam and we soaked in the view, then we drove home watching an almost full moon the whole way. It was magical.
Today I woke and had another of these precious days....a day where all my mental energy isn't taken up coping with the physical. So I worked on my print again and got my hair cut (two outings in two days). My hair has been driving me mad for a month, but I haven't had a single day where I felt up to going out for a cut.
So I should be happy. This is freedom for me right? But instead I'm feeling really sad. Sad that my life is so empty. I want to disappear. I watch my roommates come and go, seemingly able to do what they please. I know this isn't completely true....I mean they have to go to work and school. They have to take care of tasky stuff like shopping and mowing the lawn (which I can't help with). But they can also go for walks, out to movies, out for meals, shopping, driving, socializing, saunas, etc....
It's rare I can do any of these things and when I can, they are usually miserable experiences, if not during, then for days afterwards.
So there is the small sadness of the little things, but even bigger is the sadness for the larger ones. I have no partner, haven't dated in years. I have no children (which I really wanted). I have no job at present, and I feel useless. I live off the government. The most "giving" thing I do is phone my parents weekly, or the dishes, or send an occasional letter or package. I feel like a useless lump in the universe.
And I look to the future and have trouble hoping for or wanting anything. I'm just sad. And my instinct is to be alone right now. I want to be away from people, away from everyday life and having to witness all the things I'm missing. I'm tired of this sick body and having to lug it around. I'm tired of people telling me I don't look sick.
To top it off, I didn't get my results from the MRI which means now I have to wait until Monday to find out if I have cancer....there, I said it. I know it's probably not cancer, however, I don't know that for sure. And if it is, I just want to know and get on with things. I don't want to wait three more days with that hanging over me.
I talked to a friend who's daughter had the same MRI as me two days before and she got her results yesterday, so I'm guessing/hoping by Monday or Tuesday.
I'll post some photos of the river outing soon, there are some really nice ones.
Monday, September 17, 2012
I'm still here
I haven't felt like I have much to say, hence the week and a half since my last post.
I'm holding the status quo with health these past two weeks.
I have had some little ups and downs. I've also been managing a few short outings a week. I do crash a day or so later (about 36 hrs later), but then after a couple of days, I manage another little outing.
Today I had lunch with a friend which was great...but afterwards I came back to bed in tears I felt so terrible.
A good analogy of living with M.E. is to compare energy or decent moments to money. People with M.E. have almost no money (energy) to spend. And for some reason, activity of any kind (phone call, visiting, lunch out, a bath, etc) costs 5X as much money for us as for a healthy person. We are so easily depleted. Sometimes I get sick of the fact that everything nice comes at such a great cost.
This is the week of my MRI. I feel weird about it, like if I talk or write about it I may jinx it. I'm not looking forward to it, but if it's like the rest of my medical past, the results will be normal or "inconclusive" anyways. I'm not looking forward to being jammed in a loud small tube and given contrast (re: toxic) for 30-45min. Thankfully, this time next week it will be over and that will be that.
I'm holding the status quo with health these past two weeks.
I have had some little ups and downs. I've also been managing a few short outings a week. I do crash a day or so later (about 36 hrs later), but then after a couple of days, I manage another little outing.
Today I had lunch with a friend which was great...but afterwards I came back to bed in tears I felt so terrible.
A good analogy of living with M.E. is to compare energy or decent moments to money. People with M.E. have almost no money (energy) to spend. And for some reason, activity of any kind (phone call, visiting, lunch out, a bath, etc) costs 5X as much money for us as for a healthy person. We are so easily depleted. Sometimes I get sick of the fact that everything nice comes at such a great cost.
This is the week of my MRI. I feel weird about it, like if I talk or write about it I may jinx it. I'm not looking forward to it, but if it's like the rest of my medical past, the results will be normal or "inconclusive" anyways. I'm not looking forward to being jammed in a loud small tube and given contrast (re: toxic) for 30-45min. Thankfully, this time next week it will be over and that will be that.
Wednesday, September 5, 2012
Decision made for me....how nice.
Well I decided I just may try to do some PhD work this fall. As my one roommate will have a schedule again, I figured it might be quiet enough around here for me to both rest and fit in a few hours a week of "at home" reading and writing.
So I registered online, and then today looked into re-instating my funding. It turns out this is something I have to do at least 8 weeks prior to starting back up.
Decision made!
After an awful week it was a big sigh of relief to be honest. I think it was some kind of "meant to be" thing. But then the scientist in me says, "Well, it's that you were so unenthused about trying to work while feeling ill that you didn't do your homework". Either way, it amounts to me having another semester of medical leave.
I've been feeling so weak and fluy. Despite this, I have been pushing to do a few things that seem really important right now. Nothing exorbitant, just stuff that has me out of bed an hour or two more than usual.
I had a really bad cold two weeks ago and it definitely triggered this decline. As the cold eased up, the M.E. got worse. It happens to me about half the time when I get a virus.
The bad sick patch is also messing with my mood as per usual (I'm feeling both very sick and very down). And to be honest, really alone.
So I registered online, and then today looked into re-instating my funding. It turns out this is something I have to do at least 8 weeks prior to starting back up.
Decision made!
After an awful week it was a big sigh of relief to be honest. I think it was some kind of "meant to be" thing. But then the scientist in me says, "Well, it's that you were so unenthused about trying to work while feeling ill that you didn't do your homework". Either way, it amounts to me having another semester of medical leave.
I've been feeling so weak and fluy. Despite this, I have been pushing to do a few things that seem really important right now. Nothing exorbitant, just stuff that has me out of bed an hour or two more than usual.
I had a really bad cold two weeks ago and it definitely triggered this decline. As the cold eased up, the M.E. got worse. It happens to me about half the time when I get a virus.
The bad sick patch is also messing with my mood as per usual (I'm feeling both very sick and very down). And to be honest, really alone.
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