Grieving and Graduating

It's six months ago today that my mom died.  In some ways it feels a life time away.  For the first few months I counted everything - "10 days since I've talked with her" "two weeks since I sat beside her bed and visited" etc.  For a while I thought I would never stop crying - bouts where I was insomnic and up late, turning to my iPad to distract myself from crying continually, thinking about her, exhausting myself.

Now it feels less potent, she feels further away.  This is a double edged sword.  I feel sad about how quickly time has passed because I am further away from her, from our time together.  On the other hand, I don't miss the constant emotional pain and crying.

This past weekend I had guests come in, my brother and niece and my good friend A. and her son A. to help me celebrate my convocation.  I have never attended a ceremony for a degree.  For my bachelor degrees, I was already across the country by the time the ceremony took place, and for my masters I already had M.E.  I knew it would be a huge effort and drain to try to attend.

For my PhD I did want to attend, partly because my mom so wanted to see me walk across the stage, and partly because I've missed out on so many milestones and rights of passage being ill, that I wanted to find a way to do this one.

Friday I was so sick, I was sure I'd have to bail, but Saturday I felt a tad better so I toughed it out.  My friends were just amazing in helping me get there and get dressed and I'd set up accommodations with the university ahead of time.  There is just no way to accommodate the M.E stuff (light and noise sensitivity, weakness, flu and body ache, dizziness) however, I did tell them I had a fainting disorder and could not stand in line or in one place for long.

As it turns out, I was slotted first to graduate. PhDs go first, I was the only PhD from education who attended, so voila.  What makes this even cooler is they offered to walk me backstage beforehand and then I could slip out to my seat when everyone was assembled, or I could walk in with the procession (hundreds of people - graduating students and faculty).  There is no way I would have chosen to do the procession (way way too much standing) except since I was first, I figured either way I had to walk down to the stage.  So, I LEAD the procession!!! (well I was behind the marshals, but still pretty cool).

Then everyone stands at their seat til all are assembled so I slipped behind the stage to sit.  Once the procession sat, there were introductions, three short speeches and then I graduated.  After I walked across the stage where they hooded me and presented me with a medal I walked around the back where an attendant met me, then instead of going back to my seat for 2 hours as 100s of others graduated, I was lead to a back room.  I could watch more ceremony on a screen with my feet up until my friends found me.  We actually all went outside, took a few photos and headed home.  Because everyone else was still stuck indoors, we had a beautiful spot to take pictures all to ourselves.

I took some time to rest then we had a meal and gf cake to celebrate.  I was so wiped out I spent a good hour that night vomiting.  This seems to happen when I overdo, as it's the second time in two weeks where effort is followed by vomiting.  It is a commonly cited symptom of POTs and I'm thinking they definitely seem to be related for me.  Too much standing or exertion = intestinal reaction.

Anyways, not surprisingly I'm in pretty bad shape now, 3 crash days, I'm too weak to do much more than lay in bed or on the couch, and home-bound.  But that is definitely to be expected.  I don't want to post photos of friends and family to protect privacy, but here's one of my dad and me....also a few of my cool robes.  The PhD hood (the behind photo) is big and billowing, the hat is ridiculous in an awesome way and dates back to the Tudor times...and the robe is more the British style, it's open at the front.

A view of the stage

Is it real gold?

Not much going on...

Really I have very little to report or discuss.  My life is pretty same-old and monotonous.

I see my dad everyday (sometimes too much).  He isn't able to figure out much to do on his own.  He listens to music or drives around (and to be honest, he probably shouldn't even be driving).  I spent a lot of time entertaining him last week and I am ready for a break, but he shows up or calls multiple times a day with "problems" which are really just an excuse for my company...but at least he's not living with me day in and day out.

This weekend is convocation.  I didn't think it was worth it to go to my Masters one 7 or 8 years ago because I knew it would be very challenging while ill, but in retrospect I wish I had so my mom could have been there.  I decided to go to my PhD one because I've actually never been to a graduation ceremony since high school and my mom kept discussing coming to it the last few years.  I'm so sad she can't be here.

I contacted the university about accommodations so I will not have to stand in line or stand at all if I'm not up for it (except to walk across the stage).  I have 7 people (friends and family) coming to watch!!  On the one hand, it will likely be pretty dull, on the other hand, I am pretty excited.  My brother and niece decided last minute to fly out and my good friend A. and her son are coming up from Minnesota so I am trying to rest up.

Otherwise my days are spent doing little garden tasks, resting, and working on prepping my summer course.  I'm considering saying goodbye to this blog as I'm not sure how much more I can "offer" the world through my writing, although when I'm sicker, I really love having the outlet.  This week I am doing quite well health-wise so I feel less need for it.

Anyways, hoping all my readers are AWAP (as well as possible)

Great comic on the experience of PEM (post exertional malaise)

Hi friends,

I will do a proper update soon, but for now I wanted to share this.  It is very timely given my previous post as well:
https://laurachamberlain.co.uk/2016/05/12/the-m-e-adventures-comic-energy-and-exertion-meawareness/comment-page-1/#comment-245

I showed it to my roommate and she also appreciated it given she watches me suffer PEM often.

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.