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.