While I hope it's just temporary, I've entered a period of decline health-wise. Why now? Honestly I have no idea. I would have thought after helping care for my dad and mom last fall and winter, clearing out and selling a house, and moving my dad I would have had a relapse….except I didn't. So if I got through all that with only enduring nasty crash days here and there, why would my health decline months later?
The mysteries of M.E.
On the other hand, late winter early spring have almost always been my worst time of year.
I am still doing little things on my "good" days but I have no resilience or strength, and the fluey days are worse and more often. I also can't get away with anything. A short outing with my dad and I will absolutely be very sick the next day. Some days I wake up achy, it hurts to breathe. I step out of bed and have a swooping black out. I let the dog out and feed her (another swooping blackout), I get coffee and go back to bed for hours, well to be honest, basically the rest of the day is spent in bed or on the couch. I feel so ill, I just want to sink into my bed or the sofa and die, I want it to finally be over.
And sometimes I feel angry, so angry that almost 14 years since getting sick, I'm still this ill. I have no power over it, and there is not a single Dr. that's been able to take even the edge off through treatment. Most Dr.s are ignorant and dismissive of M.E. and yet I'm this sick, disabled by sickness, weakness and dizziness. Similarly, most of my non-sick friends and family, years down the road still seem to think I'm mostly just tired or "it can't be that bad, because I look great". It is a feeling of profound isolation. As if being chronically ill, spending most my days alone feeling awful, weren't isolating enough.
Perhaps as the spring continues I will bounce back. Fingers crossed, I usually do.
As for my work, I'm procrastinating. I need to start planning my course but I avoid it to do other things (like write a blog post).
On the plus, the other day while laying on the couch I was thinking about how great it is to be home. How I spent almost half a year at my childhood home and while I'm very glad I did, after my mom had passed, it seemed like there were just too many obstacles to ever come home again, and I was too sick to overcome them. Thankfully, with a lot of help, I was eventually able to get through that time. I still have pangs of guilt or panic about getting rid of some of the stuff that I did. So much went to charity as my dad couldn't remember what anything was or meant, and I didn't have the energy to research every bowl, book or nick knack.
Monday, April 25, 2016
Saturday, April 16, 2016
Don't hold the chronically ill to a higher standard.
I am a Dr. yes, it's true. It still seems a little surreal. And I managed to do almost the entire degree from bed working 2 hours or less a day. Sometimes I worked 7 days a week, sometimes I went months without doing a thing. This week, ironically, I ran across this article and could completely relate!!! I'm not the only disabled, chronically ill academic out there.
http://www.theguardian.com/higher-education-network/2016/apr/08/im-not-employed-but-please-recognise-that-i-am-an-academic
Having been ill and on disability for so long and having been exposed to a lot of unfair and ridiculous social perceptions, despite the fact that I recently managed to complete this big thing, I am wary about other people (or myself) making too big a deal about it. Here are a few of the reasons:
First, there is a perception out there that people who are on welfare or social assistance are lazy, unmotivated, or are in some way "fakers". This perception has been around a long time and sometimes when I bring it up, I'm told "people don't think that way anymore". Not true - this week alone I saw an add that alluded to it and have heard two comments about it. I've also been told by more than one friend that I obviously deserve disability but that I'm the exception to the rule (the majority who get it are lazy and/or fakers, people out to scam the system). First, every single person in the program that I'm on needs extensive medical documentation from Drs and specialists. You have to go through an excruciating and to be honest, humiliating process of being deemed "disabled" or unable to work. It would be nearly impossible to fake your way onto this program.
Unfortunately, for some, the fact that I managed to do my degree is "proof" that I'm not really disabled. Reason one not to make too much of a big deal about it.
The second big peeve I have when it comes to disability is this idea of the "heroic disabled". Sometimes people who are disabled or dying are held to a higher standard, or put on a pedestal, we are meant to be especially tough or noble or inspiring. This is really unfair. The sick and disabled are just people who happen to be sick and disabled.
Similarly, when someone who is chronically ill or disabled has somehow managed to succeed, they are held up as examples and a "reason" why others with similar circumstances should be able to pull up their boot straps and rise above their circumstances. Well if "Jane Doe" or "Joe Blow" managed to do it, why couldn't someone else with the same illness? For example, Laura Hillenbrand has severe vertigo and M.E. and yet has written two best selling books, both which have been made into movies. However, while her example is very inspiring (and only those of us who are sick daily can understand what it means to accomplish something like that while ill) that doesn't mean that everyone with M.E. has the health or resources or abilities to do the same.
On the same note, I don't want to be held up as an example of why people with M.E. could manage graduate school. I was able to do my degree even with a moderate case of M.E. for a lot of reasons:
- I found a program I could do mostly from home
- unlike the majority with the disease, I don't suffer major cognitive dysfunction (mine mostly cleared up after the first 4 years if I don't overdo it or drive).
- I was able to procure funding, I could have never paid tuition on social assistance.
- I was lucky to have a supervisor who helped me get accommodations and extra medical leaves, the university made an exception in my case.
- I don't have a partner or kids who need me therefore my little bits of extra energy could go towards my degree.
- I've always been a good student - for example, for the most part, writing, researching and reading come fairly easily to me.
If any one of these things hadn't been in place, I wouldn't have finished. I would guess most with moderate M.E. could not even think of managing graduate school.
So I've been trolling for a job now that I'm done, and it looks like I found one. I'm teaching an online course this summer. The scariest part is it might mean I loose disability. I am very frightened that if I do, once the course is over I won't be able to get back on if I need to. Despite the fact that I'm pretty sure I can manage to teach this course, I remain just as ill. I am fit for almost no form employment. Seriously - try to find me a job I can do part time, from home, on a flexible schedule that I can do with my feet up or in bed, no more than 10 or 12 hours a week. On the other hand, if I can get two courses like this a year, I will earn more than I do a whole year on disability. Despite the risk, I'm going to earn my own money for a change, even if I could end up sick and homeless (again) later. I suspect that won't happen, but it has before and could again.
On the positive, I am so excited to teach this class. I have two months to prep and am looking forward to it. As well, it's a subject I don't feel completely inadequate to teach. Not having worked for such a long time, feeling so useless spending most of everyday in bed or on the couch, I have very little self confidence or self esteem. I feel inadequate or unqualified on almost every subject or level. But it just so happens this course is about research, not only that, the type of research I just finished doing…so I think I can offer a legitimately good course.
http://www.theguardian.com/higher-education-network/2016/apr/08/im-not-employed-but-please-recognise-that-i-am-an-academic
Having been ill and on disability for so long and having been exposed to a lot of unfair and ridiculous social perceptions, despite the fact that I recently managed to complete this big thing, I am wary about other people (or myself) making too big a deal about it. Here are a few of the reasons:
First, there is a perception out there that people who are on welfare or social assistance are lazy, unmotivated, or are in some way "fakers". This perception has been around a long time and sometimes when I bring it up, I'm told "people don't think that way anymore". Not true - this week alone I saw an add that alluded to it and have heard two comments about it. I've also been told by more than one friend that I obviously deserve disability but that I'm the exception to the rule (the majority who get it are lazy and/or fakers, people out to scam the system). First, every single person in the program that I'm on needs extensive medical documentation from Drs and specialists. You have to go through an excruciating and to be honest, humiliating process of being deemed "disabled" or unable to work. It would be nearly impossible to fake your way onto this program.
Unfortunately, for some, the fact that I managed to do my degree is "proof" that I'm not really disabled. Reason one not to make too much of a big deal about it.
The second big peeve I have when it comes to disability is this idea of the "heroic disabled". Sometimes people who are disabled or dying are held to a higher standard, or put on a pedestal, we are meant to be especially tough or noble or inspiring. This is really unfair. The sick and disabled are just people who happen to be sick and disabled.
Similarly, when someone who is chronically ill or disabled has somehow managed to succeed, they are held up as examples and a "reason" why others with similar circumstances should be able to pull up their boot straps and rise above their circumstances. Well if "Jane Doe" or "Joe Blow" managed to do it, why couldn't someone else with the same illness? For example, Laura Hillenbrand has severe vertigo and M.E. and yet has written two best selling books, both which have been made into movies. However, while her example is very inspiring (and only those of us who are sick daily can understand what it means to accomplish something like that while ill) that doesn't mean that everyone with M.E. has the health or resources or abilities to do the same.
On the same note, I don't want to be held up as an example of why people with M.E. could manage graduate school. I was able to do my degree even with a moderate case of M.E. for a lot of reasons:
- I found a program I could do mostly from home
- unlike the majority with the disease, I don't suffer major cognitive dysfunction (mine mostly cleared up after the first 4 years if I don't overdo it or drive).
- I was able to procure funding, I could have never paid tuition on social assistance.
- I was lucky to have a supervisor who helped me get accommodations and extra medical leaves, the university made an exception in my case.
- I don't have a partner or kids who need me therefore my little bits of extra energy could go towards my degree.
- I've always been a good student - for example, for the most part, writing, researching and reading come fairly easily to me.
If any one of these things hadn't been in place, I wouldn't have finished. I would guess most with moderate M.E. could not even think of managing graduate school.
So I've been trolling for a job now that I'm done, and it looks like I found one. I'm teaching an online course this summer. The scariest part is it might mean I loose disability. I am very frightened that if I do, once the course is over I won't be able to get back on if I need to. Despite the fact that I'm pretty sure I can manage to teach this course, I remain just as ill. I am fit for almost no form employment. Seriously - try to find me a job I can do part time, from home, on a flexible schedule that I can do with my feet up or in bed, no more than 10 or 12 hours a week. On the other hand, if I can get two courses like this a year, I will earn more than I do a whole year on disability. Despite the risk, I'm going to earn my own money for a change, even if I could end up sick and homeless (again) later. I suspect that won't happen, but it has before and could again.
On the positive, I am so excited to teach this class. I have two months to prep and am looking forward to it. As well, it's a subject I don't feel completely inadequate to teach. Not having worked for such a long time, feeling so useless spending most of everyday in bed or on the couch, I have very little self confidence or self esteem. I feel inadequate or unqualified on almost every subject or level. But it just so happens this course is about research, not only that, the type of research I just finished doing…so I think I can offer a legitimately good course.
Wednesday, March 30, 2016
Thoughts on loss
It has been almost four months since my mom passed away. Sometimes I'm hit with grief, like being punched in the gut, it's sudden and out of the blue, I lose my breath with the pain of it. Other times it feels like a dull constant ache. Outside the fact that I miss her, it has made me ponder a lot of things. For one, very little feels meaningful or important anymore. Yes, after years and years I finally finished my PhD, but in the big scheme of things (life and death) it seems to matter very little.
Watching my mom die made me realise how limited my own remaining time on earth is, and that I (and everyone) are headed towards the same inevitable end. What lies beyond death is a good question, and one that I can't begin to make conclusions about. I truly hope death isn't final, but nonetheless, it is clearly some kind of end whether or not something lies beyond.
I am not trying to be morbid, but I think when you lose someone close, you can't help but think about these things. My world is much emptier without my mom in it. On the other hand, she turns up multiple times a day in other ways -- when I put on her clothes, for example, or see or do something that makes me think of her, or when my dad calls me by her name "Joey" which he does all the time. While it's not the same as talking with her (which I do, no I'm not crazy), these constant everyday reminders of her, in a way, keep her alive.
So much has happened in 8 months that I have yet to get my head (or heart) around much of it. Hopefully time will heal some parts of me that feel very broken. Everyday I try to go through the motions of doing little things. It serves to distract me. But I feel sucked dry emotionally, dead inside.
And as for the M.E. part, I cannot understand how I haven't relapsed form this whole experience. I've had some pretty horrible crash days, but still, I seem to bounce back to my low level of function. On that note, I found some short term, flexible, part-time, (from home) editing work for later in the spring which makes me really happy. For one, I really want to work a little, and second, I'm in pretty desperate straights financially and this little bit of income will be huge.
My dad is settling in still, and seems OK considering. As he says "I'm 85 years old, I'm an old man". His house sale closes tomorrow and I've started to get my head around managing some of his financial stuff so the stress has definitely diffused in that area. Small blessings.
I really miss having the emotional stress relief that came with having counselling sessions through hospice. I hit on a really great counselor with whom I connected. And because I was a caregiver it was free! Since moving here 11 years ago I've tried three people and none of them have been a good fit (not to mention the outing, having to drive across town, the inevitable crash etc. etc.).
For fun, here's a photo of my dad checking out the port …that grain elevator is huge! He's been enamoured by the prospect of the ice breakers coming in to break up the harbour and then this week, the first ocean going ship arriving in port.
Watching my mom die made me realise how limited my own remaining time on earth is, and that I (and everyone) are headed towards the same inevitable end. What lies beyond death is a good question, and one that I can't begin to make conclusions about. I truly hope death isn't final, but nonetheless, it is clearly some kind of end whether or not something lies beyond.
I am not trying to be morbid, but I think when you lose someone close, you can't help but think about these things. My world is much emptier without my mom in it. On the other hand, she turns up multiple times a day in other ways -- when I put on her clothes, for example, or see or do something that makes me think of her, or when my dad calls me by her name "Joey" which he does all the time. While it's not the same as talking with her (which I do, no I'm not crazy), these constant everyday reminders of her, in a way, keep her alive.
So much has happened in 8 months that I have yet to get my head (or heart) around much of it. Hopefully time will heal some parts of me that feel very broken. Everyday I try to go through the motions of doing little things. It serves to distract me. But I feel sucked dry emotionally, dead inside.
And as for the M.E. part, I cannot understand how I haven't relapsed form this whole experience. I've had some pretty horrible crash days, but still, I seem to bounce back to my low level of function. On that note, I found some short term, flexible, part-time, (from home) editing work for later in the spring which makes me really happy. For one, I really want to work a little, and second, I'm in pretty desperate straights financially and this little bit of income will be huge.
My dad is settling in still, and seems OK considering. As he says "I'm 85 years old, I'm an old man". His house sale closes tomorrow and I've started to get my head around managing some of his financial stuff so the stress has definitely diffused in that area. Small blessings.
I really miss having the emotional stress relief that came with having counselling sessions through hospice. I hit on a really great counselor with whom I connected. And because I was a caregiver it was free! Since moving here 11 years ago I've tried three people and none of them have been a good fit (not to mention the outing, having to drive across town, the inevitable crash etc. etc.).
For fun, here's a photo of my dad checking out the port …that grain elevator is huge! He's been enamoured by the prospect of the ice breakers coming in to break up the harbour and then this week, the first ocean going ship arriving in port.
Wednesday, March 23, 2016
It's Over
Well one big thing in my life is now over. My seven year very part-time journey to complete a PhD. I defended my dissertation on Monday and passed…so outside of a little paper work (and a tuition payment) I am done with being an academic student forever.
Does it feel good? Well obviously it's a huge relief to be done. It's still a little surreal.
Mostly I'm just feeling crashed (sick) and exhausted. But definitly relieved. No more tuition or medical leaves or accomodations to figure out, no more need to read more articles, no dissertation to write or edit.
I'm hoping in the next few months to find a little very part-time employment (from home?) to replace the time and energy (about an hour to an hour and a half a day) that went into my studies.
Does it feel good? Well obviously it's a huge relief to be done. It's still a little surreal.
Mostly I'm just feeling crashed (sick) and exhausted. But definitly relieved. No more tuition or medical leaves or accomodations to figure out, no more need to read more articles, no dissertation to write or edit.
I'm hoping in the next few months to find a little very part-time employment (from home?) to replace the time and energy (about an hour to an hour and a half a day) that went into my studies.
Tuesday, March 15, 2016
Back to a New Routine
The title of this post is a bit of an oxymoron. I am officially living back home after a 6 month stint of mostly living at my folks, but things have changed with my mom gone, and my dad living down the street. I would say I've changed a whole lot too… both emotionally and in the way I see the world/my life.
The past six months were insane/huge, here's the summary:
My mom got very sick in August, I flew down to help care for her, I realized my dad wasn't up to much any more let alone helping my mom therefore to a degree, all of a sudden I was helping/caring for him as well. When I came home for a two week break in October, my mom moved to a palliative ward.
When I returned from my break, I travelled there to see her every day, often twice a day, despite awful horrible symptoms/sickness because I wanted to spend time with her, comfort her. On December 2nd, she died. My dad wasn't up to being alone so I had to help him figure out where he might want to live, organize the sale of his house, deal with the executor tasks on my mom's will, empty a house of stuff, find my dad a place to live near me, pack everything he needed, take over most his bills and finances, move him….oh right, and during this time, my dissertation was going through review and I was grieving horribly (not to mention ill).
I've had a few near-nervous breakdowns after returning home. For the first 10 days my dad stayed here with me and he needs an awful lot of attention and constant companionship. I was impatient with him some of the time. Now he is living down the street and so far it's working out OK. I see him everyday, but I don't have to help him fix meals, decide what to read or watch on TV, remind him to bathe…I am still dealing with all his financial stuff, and keeping him company some, but he has his own space, and 3 meals a day, and lots and lots of people to talk to. Surprisingly, he seems relatively happy.
Next Monday I defend my dissertation. It includes a 20 min presentation and then people ask me questions for an hour? It will be gruelling. When I did my mid-way oral defence I almost put my head down on the table at the end because my brain was shutting down and I was so far passed exhausted. However, I know I can get through it…I just will. Hopefully I don't get too dizzy. I will sit for the presentation and will even sneak my feet up under the table for the questioning part which will help with the POTS symptoms…
I hope this PhD translates into some type of part-time flexible work mostly from home in the future, but if nothing else, after next Monday I will be done…finished. I wonder if I'm the first to complete a PhD almost completely from bed? Seriously! I only attended (less than 50% with accommodations) two in-person classes. The rest (online classes, papers, library, interview research, analysis, writing) all took place from bed. I also managed to swing a record 5 medical leaves out of the university. So wish me luck on Monday.
The past six months were insane/huge, here's the summary:
My mom got very sick in August, I flew down to help care for her, I realized my dad wasn't up to much any more let alone helping my mom therefore to a degree, all of a sudden I was helping/caring for him as well. When I came home for a two week break in October, my mom moved to a palliative ward.
When I returned from my break, I travelled there to see her every day, often twice a day, despite awful horrible symptoms/sickness because I wanted to spend time with her, comfort her. On December 2nd, she died. My dad wasn't up to being alone so I had to help him figure out where he might want to live, organize the sale of his house, deal with the executor tasks on my mom's will, empty a house of stuff, find my dad a place to live near me, pack everything he needed, take over most his bills and finances, move him….oh right, and during this time, my dissertation was going through review and I was grieving horribly (not to mention ill).
I've had a few near-nervous breakdowns after returning home. For the first 10 days my dad stayed here with me and he needs an awful lot of attention and constant companionship. I was impatient with him some of the time. Now he is living down the street and so far it's working out OK. I see him everyday, but I don't have to help him fix meals, decide what to read or watch on TV, remind him to bathe…I am still dealing with all his financial stuff, and keeping him company some, but he has his own space, and 3 meals a day, and lots and lots of people to talk to. Surprisingly, he seems relatively happy.
Next Monday I defend my dissertation. It includes a 20 min presentation and then people ask me questions for an hour? It will be gruelling. When I did my mid-way oral defence I almost put my head down on the table at the end because my brain was shutting down and I was so far passed exhausted. However, I know I can get through it…I just will. Hopefully I don't get too dizzy. I will sit for the presentation and will even sneak my feet up under the table for the questioning part which will help with the POTS symptoms…
I hope this PhD translates into some type of part-time flexible work mostly from home in the future, but if nothing else, after next Monday I will be done…finished. I wonder if I'm the first to complete a PhD almost completely from bed? Seriously! I only attended (less than 50% with accommodations) two in-person classes. The rest (online classes, papers, library, interview research, analysis, writing) all took place from bed. I also managed to swing a record 5 medical leaves out of the university. So wish me luck on Monday.
Monday, February 29, 2016
After a whirl wind, I'm home.
Things were absolutely crazy the last week at my Dad's. I had two friends planning to come out to help finish clearing the house and pack my dad, however, one had a work emergency and came two days late. However, they were both fantastic and did a ton. One of them even drove my dad's car north (a 16hr drive). There is no way I could have managed it all without them. I have the best friends in the world, no doubt. My dad's house doesn't close until March 31st and there's still a few details to sort, but for now I'm home.
My dad is driving me insane asking 100 questions a day and sticking to me like glue (nothing new). It has been almost 1/2 a year I've been his care giver as I initially flew down mid-August when my mom went in the hospital. It is tough, because in some ways he is still functioning OK, but in other ways he is like a toddler. I am quite ill now that I'm home. The first day back was Okay, the second day I felt pretty ill and crashed, the third day back I felt even worse.
I have no patience for my dad, then feel horrible about the way I treat him. This morning he got up early and banged around making noise and woke me up. Then told me he had a big emergency and it was just that he was three days out from being out of glucosimine. Then he fed the dog but didn't tell me so she had two breakfasts. Then he went out in -20 windchill to clean his car without mitts or a hat.
He wants permission to do anything. When my roommate offered to go buy groceries for the week (I asked her if she would take him along) he instantly said no, he couldn't go (he doesn't want to do anything without me). I made him go and he enjoyed himself.
How can I stick my father in a "home"? On the positive, it is four blocks away and he is social and needs constant attention and validation so maybe he will be happy after a transition period? I've never been a parent so am not used to the huge burden of deciding things for other people. For my mom, I was her POA and decision maker. I had to give the hospital permission not to treat her final infection. With my dad, I'm doing all his financial and personal decision making and it's a huge huge weight. And I am so so so so exhausted.
My dad is driving me insane asking 100 questions a day and sticking to me like glue (nothing new). It has been almost 1/2 a year I've been his care giver as I initially flew down mid-August when my mom went in the hospital. It is tough, because in some ways he is still functioning OK, but in other ways he is like a toddler. I am quite ill now that I'm home. The first day back was Okay, the second day I felt pretty ill and crashed, the third day back I felt even worse.
I have no patience for my dad, then feel horrible about the way I treat him. This morning he got up early and banged around making noise and woke me up. Then told me he had a big emergency and it was just that he was three days out from being out of glucosimine. Then he fed the dog but didn't tell me so she had two breakfasts. Then he went out in -20 windchill to clean his car without mitts or a hat.
He wants permission to do anything. When my roommate offered to go buy groceries for the week (I asked her if she would take him along) he instantly said no, he couldn't go (he doesn't want to do anything without me). I made him go and he enjoyed himself.
How can I stick my father in a "home"? On the positive, it is four blocks away and he is social and needs constant attention and validation so maybe he will be happy after a transition period? I've never been a parent so am not used to the huge burden of deciding things for other people. For my mom, I was her POA and decision maker. I had to give the hospital permission not to treat her final infection. With my dad, I'm doing all his financial and personal decision making and it's a huge huge weight. And I am so so so so exhausted.
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