Over-doing it M.E. style.

For many reasons I've been overdoing it lately with yucky consequences.  First, my dad calls and comes by often.  I do more than I should physically to keep him company, entertain him, help him with managing his mail and finances etc.  While I am glad that I can be here for him, sometimes I wish there was at least one other person in his life who could help with some of this.

Second, I've been doing a dog sport with my dog since she was two (on and off for 6 years).  It's at a very slow pace (we've learned things over 5 years that took people in our class 6 mo or less).  We learn slower because I miss 1/3 to 1/2 the classes, and when I attend class--due to dizziness and weakness I sit out on much of it.  Still, we are at the point now where we can compete this summer in the disabled class if I'm up to attending, and if we can practise some more skills that enable me to walk less during the events (each event is less than a min but still difficult for me).  I have been practicing despite dizzy spells and sometimes crashes.  I really want to do this but it's coming at a cost.

Third, I'm planning a course that I'm teaching online this summer and this involves working a couple hours every morning.  I am making progress but still, I will need every hour I can manage to have the course ready by July, I want it to be a stellar course.

So I've been feeling crashed and quite ill often lately, some of it from doing too much.  For those who've experienced PEM (post exertional malaise), you can completely understand.  For those who are healthy or suffer other illnesses, I very much doubt you can fathom PEM by no fault of your own, you have to experience it to get it.  (On that note, if one more person tells me "they get tired too, so I know how you feel" I will slug them, seriously!!!).

PEM is not fatigue and it is super hard to describe.  It is a biological reaction to activity...In fact, there are multiple studies that show when people with M.E. are active, 24-48 hours there are measurable metabolic, cardiovascular, and immune effects.  Personally, for me, it's like having run a 10K during the absolute worst day of a bad cold or influenza (without the fever or congestion - although I do get slight fever sometimes).  If I do an outing with my dad one day, for example, the next day I'm achy, weak (so weak that it's difficult to lift my arms or even type and if I do my muscles shake, it's difficult to stand for even a minute), sore throat, my armpit lymph nodes ache, I'm dizzy and lightheaded, and I feel as if every cell in my body is poisoned - I feel horribly icky and sick.

For the first 5 years of feeling this ill I just wanted to scream because how could I be this sick (without dying) yet look "great" and there was no Dr. or drug that could help?  Since then I just want to scream because it goes on and on and on and this is my life.  I hate being punished for every little thing I try.  When PEM hits, often, I just want to sink into my bed and have it over.

And yet, many of us just go on, right? We spend most our days laying in bed or on the couch.  We are probably alone for much of our existence (because social is so draining and we're too sick to go to work or school where we might interact with other humans).  We try to eek out our little moments of happiness and fulfillment.  We try to change our thinking to make it seem less bad (for example, I tell myself people my age have died of cancer, are in comas, are starving or abused etc. etc.). We try meditation, relaxation etc. to take our minds off how horrible we feel, because we can't distract ourselves with work or exercise because we are too sick and these things would make us much sicker aka PEM. It's a viscous cycle.

May 12th is M.E. awareness day and I've been seeing lots of talk of the Millions Missing campaign.
http://millionsmissing.meaction.net  Check it out.

I think the campaign is brilliant and very appropriate.  I wish I'd sent a pair of shoes in time to participate.  I will never feel "lucky" to have a disease like M.E., where most the population is disabled while simultaneously misunderstood and trivialized by most of the medical profession and the general public.  Virtually nothing is spent on research, there is yet to be a single approved treatment.  Still, I think of my fellow M.E.ers with severe M.E. all the time and can barely fathom how tough these people are just to get through each day.  And as awful as it sounds while I hate having moderate M.E., I am very grateful that that is not me.

Finally, yesterday was mothers day so I tried to avoid Facebook.  It was just too hard to see all the posts about everyone's mother and children when I wasn't able to have children and lost my mother so recently.  Not that I'm not happy for others, it's just personally too raw right now.  I have been missing my mom a lot and still have bouts where I cry inconsolably until I am beyond exhausted.  She wasn't the perfect mother, but neither was I the perfect daughter.  Our relationship was complicated, but the last 10-15 years we've been good friends.  I miss her friendship most of all.

Here's a fun photo I found recently from 8-10 years ago. Also one taken of our family when I was still a little baby (my youngest brother wasn't born yet).

Decline

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.

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.

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.

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.

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.