Making decisions when you're chronically ill is tough. Here are some looming on the horizon:
- should I go back to school in the fall (means about 10 hrs a week of sedentary work from home, often done from bed).
- should I go on this camping trip I have been planning (dreaming about) for a year now. It's planned as well as a sickie can plan.
- Do I go out to lunch with a friend I haven't seen in a year?
- Should I travel to visit family in the fall, risking a relapse?
Every week I make decisions that may impact my health (fair enough, some aren't as big as these). Sometimes I make a decision to do some activity and I pay for it royally.
For example, last summer I attended a seminar in July and got very sick. I've been mostly housebound and often bed bound since. Was it worth it? Is suffering the worst flu of my life that lasted a year worth it? I guess i have to vote no.
It's interesting what people from the outside think I should risk. I very often hear "You should get out more", or if I'm suffering consequences, "but it was worth it to do X right?". Obviously they don't have to live the consequences.
That being said, sometimes I risk doing stuff and it works out fine. This makes it even harder to make decisions about what I should and shouldn't risk doing. It's like a roll of the dice. I never know if and how long the aftermath will last.
And sometimes, I go down hill and I just don't know why? When I crash or relapse I ask myself, "Was it some activity I did? Was it a stressor? Is there a virus going around?" (even when I don't get said virus, when there's one going around, the M.E. is usually worse).
July was my best month in a year, easily, hands down.
A week and 1/2 ago I went down hill. I'm back to feeling terrible. Very very viral and fluy. I fainted this week and have blacked out lots (without fainting).
- sore throat, referred ear pain, very heavy fluy breathing/chest ache, weakness, shakes, diarrhoea, painful lymph nodes in my arms.
I'm supposed to go camping Thurs. I'm still considering it. If I go will I be in bed the rest of the year? Is it worth it? I'm in bed right now anyways.
If I'm this sick at the end of the month I will have to, once again, take another semester of medical leave....I guess that's not a hard decision to make.
And I'm just so tired. Tired of being sick, tired of trying to make the "right" decision, the best decision for my health. The one that maximizes pleasure and life experiences while minimizing this suffering.
And did I bring this on myself? Was it the fact I went to MN in July and made the most of my better days last month? Is this crash/relapse the result of an accumulation of doing more in July?
Monday, August 6, 2012
Tuesday, July 31, 2012
Sad news for moi
So about a month ago, I had my last tele health appointment with my specialist. I say last, because 10min in she said "I have good and bad news". Well, the good news is for British Columbia where she is going to run the complex illness centre for Lyme, M.E./CFS and Fibromyalgia. The bad news is for all of us in Ontario whom she's treated (myself for 8 years).
Here's an article about it: http://www.vancouversun.com/health/Clinic+specialize+complex+chronic+conditions/6922031/story.html
She is the only full time specialist in Ontario, or should I say "was". She hasn't been taking patients for a few years now.
So, not only am I without a specialist, I'm also without a Dr. I do have a very nice NP, however, she is not up to date on any research or willing to prescribe anything without a consult. She may try to get the clinic's ID Dr. (Infectious Disease) to consult on my case, however, based on my experience here, I'll be lucky if he even believes this disease exists, let alone be willing to treat me.
It's strange, I feel so alone now even though I only saw Dr. B a couple times a year and we never found anything especially effective. She was always up to date with the research and had patients on various "protocols". She was willing to try things and was always very supportive and empathetic. She helped me get provincial disability and later accommodations when I was in the Masters of Education.
It's a strange new world without a medical ally.
My health has also taken a dive again (hopefully temporary). I've spent the last 4 days with major stomach issues as well as an M.E. (fatigue and immune) crash. Hopefully it passes quickly.
Here's an article about it: http://www.vancouversun.com/health/Clinic+specialize+complex+chronic+conditions/6922031/story.html
She is the only full time specialist in Ontario, or should I say "was". She hasn't been taking patients for a few years now.
So, not only am I without a specialist, I'm also without a Dr. I do have a very nice NP, however, she is not up to date on any research or willing to prescribe anything without a consult. She may try to get the clinic's ID Dr. (Infectious Disease) to consult on my case, however, based on my experience here, I'll be lucky if he even believes this disease exists, let alone be willing to treat me.
It's strange, I feel so alone now even though I only saw Dr. B a couple times a year and we never found anything especially effective. She was always up to date with the research and had patients on various "protocols". She was willing to try things and was always very supportive and empathetic. She helped me get provincial disability and later accommodations when I was in the Masters of Education.
It's a strange new world without a medical ally.
My health has also taken a dive again (hopefully temporary). I've spent the last 4 days with major stomach issues as well as an M.E. (fatigue and immune) crash. Hopefully it passes quickly.
Tuesday, July 24, 2012
....and holding
I'm still doing better. I feel less sick. I have more energy than I have for a year, maybe two. I am maybe 10% improved overall, although it is so hard to quantify. I would say even more when it comes to immune symptoms. I have periods of the day without a sore throat or lymph pain (they still hurt at night). The POTS and OI are still quite bad (summer, heat, you know) and I've had a few scares with significant blackouts. But throat, fevers, breathing ache, and malaise are much better.
Instead of 1-2 hours of the day not horizontal (where I am able to sit-up or stand), I'm spending maybe 4 upright. This is wonderful. For the first time in a long while, I don't hate my life. All it took was not feeling like hell every minute of the day "go figure".
That being said, I had a friend visit and tried going into a big store (Michael's) and it was a disaster. Not only did I get flu symptoms and dizziness from the standing (and the lights and the sounds), but I crashed the next day from the effort. It's funny, because if I do something similarly active outside I haven't been crashing every time (maybe one out of 3 times). I think it must be in part, the standing still which wrecks havoc with those of us who have fairly severe OI (orthostatic intolerance). Also, perhaps because stores are especially mentally stimulating they are more exhausting.
I know someone might read that and say "you must have a phobia of crowded places", but really, I'm not scared of stores at all (not that I was ever a shopper - I never have been), but for some reason they drain me and cause crashes in the same way driving does (despite the fact I used to love to drive).
Most Dr.'s who research M.E. call it a neuro-immune disease (sometimes a neuro-endocrine-immune illness). There are definite aberrations in both the nervous system and immune system. While I have always been more aware of the immune symptoms, I definitely get some nervous system ones. Like crashing from stores, driving, the severe OI (which is an issue with the autonomic nervous system), as well as periods where I get fairly significant tremors and muscle twitches.
I won't be blogging much this month partly because I'm a little busier what with the better health. I'm also spending way less time on the computer (doing a lot of reading for one).
I hope everyone who reads this is also doing well, having a good summer. If not, I have my fingers crossed for all of you. If you had told me 4 months ago that I would ever feel this good again, I wouldn't have believed it. (Not to get carried away, I'm not well or healthy or anything, I've just had enough of the illness cloud lift to remember I have a personality and things I enjoy in life). Here's hoping it lasts.
Instead of 1-2 hours of the day not horizontal (where I am able to sit-up or stand), I'm spending maybe 4 upright. This is wonderful. For the first time in a long while, I don't hate my life. All it took was not feeling like hell every minute of the day "go figure".
That being said, I had a friend visit and tried going into a big store (Michael's) and it was a disaster. Not only did I get flu symptoms and dizziness from the standing (and the lights and the sounds), but I crashed the next day from the effort. It's funny, because if I do something similarly active outside I haven't been crashing every time (maybe one out of 3 times). I think it must be in part, the standing still which wrecks havoc with those of us who have fairly severe OI (orthostatic intolerance). Also, perhaps because stores are especially mentally stimulating they are more exhausting.
I know someone might read that and say "you must have a phobia of crowded places", but really, I'm not scared of stores at all (not that I was ever a shopper - I never have been), but for some reason they drain me and cause crashes in the same way driving does (despite the fact I used to love to drive).
Most Dr.'s who research M.E. call it a neuro-immune disease (sometimes a neuro-endocrine-immune illness). There are definite aberrations in both the nervous system and immune system. While I have always been more aware of the immune symptoms, I definitely get some nervous system ones. Like crashing from stores, driving, the severe OI (which is an issue with the autonomic nervous system), as well as periods where I get fairly significant tremors and muscle twitches.
I won't be blogging much this month partly because I'm a little busier what with the better health. I'm also spending way less time on the computer (doing a lot of reading for one).
I hope everyone who reads this is also doing well, having a good summer. If not, I have my fingers crossed for all of you. If you had told me 4 months ago that I would ever feel this good again, I wouldn't have believed it. (Not to get carried away, I'm not well or healthy or anything, I've just had enough of the illness cloud lift to remember I have a personality and things I enjoy in life). Here's hoping it lasts.
Friday, July 13, 2012
sustained upturn
I continue to be improved. I would say maybe 5% overall, perhaps a little more. The main improvement is with both energy and sustainability. What I mean by sustainability, is I can do more without crashing, and my crashes are shorter. While in the disability scale 5% is not a lot, it is enough that I'm not complaining...honestly, I'll take it!
I also notice a burden being lifted mentally and emotionally. With a little ease-up in the sick realm, I am also coping better with life in general.
Why am I improved? Honestly, I am hesitant to say it, but I think it must be in part a result of the high dose B12. I have been giving myself B12 shots now for maybe a month or just a little more and the improvement coincided almost exactly with the start of the B12 (beginning a week or so after).
I also speculate, and I may be grasping at straws here, the increased Vitamin D and sunlight. From the start of the spring I have been spending more time outside. Sometimes just in my chair, but also short walks around the gardens or even sitting and weeding.
So while I have cancelled 3 trips to my old stomping grounds in the last 2 years due to health, I finally bit the bullet and came!!! My old stomping grounds is where I lived and worked the 6 years in Minnesota prior to getting the Mono and subsequent M.E./CFS. I was a wilderness guide here, also working a little at the local college teaching physical education (outdoor) classes.
Because I live between three and four hours away, and many of my friends were here, I used to get back a few times a year. Then I started getting worse. I have had trouble making the trip even as a passenger. As well, many of my friends that lived here have moved on.
Last week, my friend N came up to visit. It had been two years since we'd seen each other in person. On a bit of a whim, I took the risk to come home with her. The journey was tough (just a ride in the car, maybe 4 hrs). I was in tears by the end. But after a day and 1/2 resting, I popped back up to my status quo. And now she is out in the woods so I've mostly just been doing what I do at home - resting in bed.
Resting....except instead of traffic, neighbour dogs barking, roommate noise, I hear the wind through the aspen and the birds. It is so peaceful.
I have pushed a little too hard, though....I get here and people want to see me. And they just don't understand chronic illness from inside a "well" body. I think it's just too far from reality. They don't realize that for me, just sitting up for more than a short period comes with consequences (and because it hits a day or so later they don't get the joy of seeing the consequences).
Still, I'm glad I came, and I'm preparing mentally in case I have a crash from the trip...but I'm also crossing my fingers that the crash is non-existent, or at least short. I'm hoping this improvement in resilience continues.
I'm posting a few photos - me and N's dog, a nearby lake (there are lakes everywhere here), a frog I saw, and the road where I'm staying.....
I also notice a burden being lifted mentally and emotionally. With a little ease-up in the sick realm, I am also coping better with life in general.
Why am I improved? Honestly, I am hesitant to say it, but I think it must be in part a result of the high dose B12. I have been giving myself B12 shots now for maybe a month or just a little more and the improvement coincided almost exactly with the start of the B12 (beginning a week or so after).
I also speculate, and I may be grasping at straws here, the increased Vitamin D and sunlight. From the start of the spring I have been spending more time outside. Sometimes just in my chair, but also short walks around the gardens or even sitting and weeding.
So while I have cancelled 3 trips to my old stomping grounds in the last 2 years due to health, I finally bit the bullet and came!!! My old stomping grounds is where I lived and worked the 6 years in Minnesota prior to getting the Mono and subsequent M.E./CFS. I was a wilderness guide here, also working a little at the local college teaching physical education (outdoor) classes.
Because I live between three and four hours away, and many of my friends were here, I used to get back a few times a year. Then I started getting worse. I have had trouble making the trip even as a passenger. As well, many of my friends that lived here have moved on.
Last week, my friend N came up to visit. It had been two years since we'd seen each other in person. On a bit of a whim, I took the risk to come home with her. The journey was tough (just a ride in the car, maybe 4 hrs). I was in tears by the end. But after a day and 1/2 resting, I popped back up to my status quo. And now she is out in the woods so I've mostly just been doing what I do at home - resting in bed.
Resting....except instead of traffic, neighbour dogs barking, roommate noise, I hear the wind through the aspen and the birds. It is so peaceful.
I have pushed a little too hard, though....I get here and people want to see me. And they just don't understand chronic illness from inside a "well" body. I think it's just too far from reality. They don't realize that for me, just sitting up for more than a short period comes with consequences (and because it hits a day or so later they don't get the joy of seeing the consequences).
Still, I'm glad I came, and I'm preparing mentally in case I have a crash from the trip...but I'm also crossing my fingers that the crash is non-existent, or at least short. I'm hoping this improvement in resilience continues.
I'm posting a few photos - me and N's dog, a nearby lake (there are lakes everywhere here), a frog I saw, and the road where I'm staying.....
Monday, July 2, 2012
Better Week
It's nice to have good news once in a while. I had a decent week on the whole. One of my best in a year (which isn't saying a lot really). I have had two major crash days, however, in both cases I can peg why (in other words, classic post exertional malaise - crashing 36 hrs later) . The first was from a swim/dip in Lake Superior = worth it, and yesterday I was horribly crashed from doing some cleaning the day before around the house.
My housemates are away. In some ways it's wonderful. For one, the house is quiet. And secondly, the house is relatively clean with a very small effort on my part. On the other hand, on my good days I get a little lonely. On those days I miss my peeps. Like everything, there are both pros and cons to living alone.
Things sure have changed. When I lived alone, I got lonely sometimes - but usually it took days or weeks of not talking/seeing anyone. Now, I'm alone for a few days and I notice it.
That being said, for the most part I am savouring the solitude....it will be over too soon. I've especially been grateful on my crash days not to have to rally to visit or interact. When I feel that ill my mood just plummets and it's all I can do to deal with the sick, fluy body, let alone the social.
.....I feel like such a cantankerous person sometimes. My self-worth is tested already by feeling sick, unproductive, and useless - I find my moodiness around others makes me feel even worse about myself. I guess the solution would be to become a better, nicer person - gain some moral strength. I'm not holding my breath.
A few health related notes:
My housemates are away. In some ways it's wonderful. For one, the house is quiet. And secondly, the house is relatively clean with a very small effort on my part. On the other hand, on my good days I get a little lonely. On those days I miss my peeps. Like everything, there are both pros and cons to living alone.
Things sure have changed. When I lived alone, I got lonely sometimes - but usually it took days or weeks of not talking/seeing anyone. Now, I'm alone for a few days and I notice it.
That being said, for the most part I am savouring the solitude....it will be over too soon. I've especially been grateful on my crash days not to have to rally to visit or interact. When I feel that ill my mood just plummets and it's all I can do to deal with the sick, fluy body, let alone the social.
.....I feel like such a cantankerous person sometimes. My self-worth is tested already by feeling sick, unproductive, and useless - I find my moodiness around others makes me feel even worse about myself. I guess the solution would be to become a better, nicer person - gain some moral strength. I'm not holding my breath.
A few health related notes:
- The little bit better energy I've had for a couple weeks has coincided with me taking B 12 injections, so I'm hoping to convince my specialist to continue them when I see her tomorrow morning.
- I saw the endocrinologist about the thyroid cysts, it looks like they are nothing to worry about - we will ultrasound them in 9 mo and if they still haven't grown, let them be (they are very small and haven't grown in 5 years).
- My CT scan of my abdomen (with contrast) showed some haziness around my pancreas and some small lesions on my liver (these are fairly common and usually nothing to worry about). However, due to the haziness of my pancreas I'm going for an MRI to rule out "pancreatic cancer and lymphoma". Sounds scary, but I'm not too worried as my gut issues and pain are so much improved I'm almost back to my old diet.
Saturday, June 23, 2012
Lets Go Whitewater Paddling?!! &&$%%$**%##
Too funny.
My OI symptoms were horrendous today and I've had multiple close calls (complete black outs without the faint). Still, I managed to go to the local hardware store to buy supplies for the bottlejack printing press I'm building (a work in progress).
While standing in the small, local hardware store looking for stuff, someone shouted "Gail!" across the aisles. It was one of those moments, you know the ones where it is taking every bit of mental and physical stamina you have not to scream with the dizzy, sick, fluy, feeling?
Still, I was happy to see this person.
He asked if I still liked to paddle (he was also a wilderness guide for a sister organization to the one I worked for) and was talking about how him and his wife had been going out with friends to paddle lately at a local rapid (whitewater canoeing).
He asked if I wanted to come out to the rapids Tues. night.
Well, what a strange moment right? I mean I barely leave the house, spend almost all my time in bed or laying down (I figured it out to 1-2 hours a day where I'm not horizontal) - and yet emotionally, I'm happy that I'm being invited somewhere, happy to see an old friend/acquaintance. He obviously doesn't have a clue how sick I am.... how would he... I live in my bedroom.
I said it might be fun to come watch if nothing else, trying to be sociable. We talked a bit about paddling, and the printing press I was building, and then we headed off to our own projects (and me home to bed).
I mean of course I want to go paddling!!...it's not a matter of intention or desire, in fact I'm dying to go whitewater paddling...how cool would that be? I'm even laying here contemplating what might happen if I was well enough to even get to the rapid (maybe a 1/2 hr drive).
If I managed to get there would I get in a boat? My arms are very very weak not to mention the things that happen after I exert myself in any way (severe immune symptoms, muscle tremors and twitches, dizziness - although generally those symptoms bombard me 24-48hrs later). How many days, months might I crash/relapse if I tried whitewater paddling? And would it be worth it????? I haven't even been able to manage a meal out in months...I have trouble lifting heavy pots, standing, existing, really.
It was a pinhole peak into what I might have if I weren't sick....I'm very lucky to have a few friends left, but ultimately I have a very limited life. If I were healthy I'd exercise, have a job/carreer, go out and socialize, join stuff...maybe a book club. I might date, I'd always wanted to foster or adopt, I'd ski in the winter, in the summer I'd paddle, maybe rock climb again. Oh the possibilities (don't go there right?). But I can't dwell on this...I need to not dwell on this!!!
This is the life I have; a sick, limited life.
How do I not hate my life? I feel like such an outcast, such a failure...I want to blame myself. That was what I did early on, for years even...that and push myself....but I'm past that phase. I accept now that I never wanted this, I couldn't have even imagined something this awful if I'd tried.
People look at me: I don't look sick, they probably think I'm exaggerating or somehow weak in character and/or stamina....many have said as much. And yet, despite anything I or anyone else believes, I'm very ill. I wake up ill every day no mater what I tell myself, and unless I am fastidious about pacing, I get worse. If I choose to put a smile on I'm ill with a smile on...If I choose to be angry and bitter, I'm still ill (and angry and bitter).
As Toni Bernard writes, whatever problems we have, this is just our life, right? This is just my life.
(Here's a link to her post from 11 years sick - I found it inspiring: http://www.psychologytoday.com/blog/turning-straw-gold/201205/11-tips-11-years-sick)
In order to survive emotionally, I need to not crash too often as "not" crashed is bad enough. I need to live in my bubble....that is what disability is, I guess...the more disabled, the smaller the bubble.
So instead of paddling I'll continue to build my press, one step forward every day. I'll try to forget what might be or could have been if...if....
....if only - like the fact that I could have been going paddling Tues. night.
And thanks to anyone who made it through this rant (sorry)
Here's a print I did (block print) inspired by reading Watership Down this week...although they are hares, not rabbits.
My OI symptoms were horrendous today and I've had multiple close calls (complete black outs without the faint). Still, I managed to go to the local hardware store to buy supplies for the bottlejack printing press I'm building (a work in progress).
While standing in the small, local hardware store looking for stuff, someone shouted "Gail!" across the aisles. It was one of those moments, you know the ones where it is taking every bit of mental and physical stamina you have not to scream with the dizzy, sick, fluy, feeling?
Still, I was happy to see this person.
He asked if I still liked to paddle (he was also a wilderness guide for a sister organization to the one I worked for) and was talking about how him and his wife had been going out with friends to paddle lately at a local rapid (whitewater canoeing).
He asked if I wanted to come out to the rapids Tues. night.
Well, what a strange moment right? I mean I barely leave the house, spend almost all my time in bed or laying down (I figured it out to 1-2 hours a day where I'm not horizontal) - and yet emotionally, I'm happy that I'm being invited somewhere, happy to see an old friend/acquaintance. He obviously doesn't have a clue how sick I am.... how would he... I live in my bedroom.
I said it might be fun to come watch if nothing else, trying to be sociable. We talked a bit about paddling, and the printing press I was building, and then we headed off to our own projects (and me home to bed).
I mean of course I want to go paddling!!...it's not a matter of intention or desire, in fact I'm dying to go whitewater paddling...how cool would that be? I'm even laying here contemplating what might happen if I was well enough to even get to the rapid (maybe a 1/2 hr drive).
If I managed to get there would I get in a boat? My arms are very very weak not to mention the things that happen after I exert myself in any way (severe immune symptoms, muscle tremors and twitches, dizziness - although generally those symptoms bombard me 24-48hrs later). How many days, months might I crash/relapse if I tried whitewater paddling? And would it be worth it????? I haven't even been able to manage a meal out in months...I have trouble lifting heavy pots, standing, existing, really.
It was a pinhole peak into what I might have if I weren't sick....I'm very lucky to have a few friends left, but ultimately I have a very limited life. If I were healthy I'd exercise, have a job/carreer, go out and socialize, join stuff...maybe a book club. I might date, I'd always wanted to foster or adopt, I'd ski in the winter, in the summer I'd paddle, maybe rock climb again. Oh the possibilities (don't go there right?). But I can't dwell on this...I need to not dwell on this!!!
This is the life I have; a sick, limited life.
How do I not hate my life? I feel like such an outcast, such a failure...I want to blame myself. That was what I did early on, for years even...that and push myself....but I'm past that phase. I accept now that I never wanted this, I couldn't have even imagined something this awful if I'd tried.
People look at me: I don't look sick, they probably think I'm exaggerating or somehow weak in character and/or stamina....many have said as much. And yet, despite anything I or anyone else believes, I'm very ill. I wake up ill every day no mater what I tell myself, and unless I am fastidious about pacing, I get worse. If I choose to put a smile on I'm ill with a smile on...If I choose to be angry and bitter, I'm still ill (and angry and bitter).
As Toni Bernard writes, whatever problems we have, this is just our life, right? This is just my life.
(Here's a link to her post from 11 years sick - I found it inspiring: http://www.psychologytoday.com/blog/turning-straw-gold/201205/11-tips-11-years-sick)
In order to survive emotionally, I need to not crash too often as "not" crashed is bad enough. I need to live in my bubble....that is what disability is, I guess...the more disabled, the smaller the bubble.
So instead of paddling I'll continue to build my press, one step forward every day. I'll try to forget what might be or could have been if...if....
....if only - like the fact that I could have been going paddling Tues. night.
And thanks to anyone who made it through this rant (sorry)
Here's a print I did (block print) inspired by reading Watership Down this week...although they are hares, not rabbits.
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