Time for a Change?

Warning! heavy topics discussed below:

I'm debating making some big changes.  More than once this past year, I've wanted my life to end.  This is the morbid truth. My life is often pretty miserable (I feel so ill, weak, and dizzy), and I also feel very alone, isolated. What is the purpose of keeping on? How does my life add anything to this wide world? Who enjoys my company, especially when my energy, stamina, and symptoms effect my ability to be social?

When I returned from visiting my brother and his family, the depression hit hard again.  Outside of my housemate/friend, there's not a single person who cared or noticed I'd been away.  The dog walker maybe?  There wasn't a single missed phone message, or a single piece of mail waiting for me.

How purposeless my life seems.  Also, adding another layer, I've had severe insomnia since the trip.  Worse than I can remember having in my whole life.  I go to bed exhausted and doze a little, but mostly lay there for hours and hours, sometimes gaining only two or three disrupted hours of sleep a night.  At first I think it was due to the three hour time change.  But it's been almost 2 weeks. My usual sleep aids are doing little.  I've also added melatonin to the mix, to no avail.

This house is also weighing on me.  While in some ways I love having a home, (and it's a pretty cute one) there are many problems (some structural) that need to be addressed.  I have no extra income to address them, and I don't have the health to manage even some of the smallest tasks that somehow I thought when I bought the house, that I would manage.

So anyways, something flipped inside of me this week and I've started considering another option.  Options are something that are hard to come by when you're ill to the point of being unable to do a lot of stuff.

My disability income is contingent, for example, of me living in this province.  Since I spent the decade before getting ill out of the province, I have very limited community here.

However, I started questioning this week, why stay here in this city?  What other options could I consider? Is there somewhere else I could go and make a home for myself, somewhere where I might feel less isolated? Or is there a way for me to feel less isolated and disconnected here?

Also, could I be less burdened by a fixer upper not to mention all the usual maintenance a home needs? Could I find something much smaller and low maintenance, for example? (e.g. I've been reading a book about a tiny house, not that I necessarily want a tiny house, it just encouraged me to think outside the box).

I don't have an answer yet, but I've tried to put these questions out into the universe.  Is there a way to stop feeling so helpless and dependent (on the government, on my housemate) just wishing it would all end? Am I too sick and too old and too useless to find a life that's a little less lonely? Yes, I realize I'm very very lucky to have the security of a home to live in, and disability income to help me exist.  But even this is tinged with guilt (receiving social assistance) every time I think about it.

I feel stuck in a rut.  I want to start thinking in a less fatalistic way.  There's all sorts I can't control, most frustratingly, my health.  But what can I control? What steps could I take to deal with some of the worst burdens in my life (basically lack of employment and income, a home that's too high maintenance for someone who's ill, and most importantly, social isolation).

Recovering, or trying to.

Having travelled, I have no idea how long it will take me to recover.  On the one hand, I could be in a lot worse shape right now (I'm not as relapsed as I was in February). On the other hand, while I expected it, it is nonetheless frustrating to feel so ill and weak/tired.

I actually had a bit of a break-down this week.  I think a lot of it had to do with post-travel fatigue and lack of proper sleep.  But I'm also just so tired of being ill and unable to function.  There are so many things each day I either want to do, or attempt to do. I get so frustrated with my complete lack of energy/stamina or strength. Also, I'm lonely.  M.E. is so isolating.  I only have one friend in this city, and she has her own busy life. I just am not well enough to go out and meet people, it's not like I have a job where there's social contact.  I wonder sometimes what I'm doing here? But I don't know where else I could go?

As for recovery, I decided I would wait a week after returning home to start working on my dissertation again.  I have managed to get approval from my program for a medical leave this summer.  I still have to get approval from the university itself, and will find out next week.  If I'm approved, this doesn't mean I won't continue to plug away, it will just take the pressure off a little.

I still seem to have jet lag. I'm up until 1 or 2 am, then I sleep in, but I'm not getting very good sleep, or the 9 hours I seem to function best on.  If I get less than 9 hours, the M.E. seems to get worse.

Here's a print I created before I left on my trip, I just had to print the final layer, or key block.
Tell me which version you like better, the lighter one, or the darker/bolder one.

I'm also posting a few photos from around this time last year when the ice was going out on Lake Superior.  It might be hard to see, but they partly inspired the print.

As for the poll on the right, it seems that most of us with M.E. have some form of OI, and POTS is the more common one.

I was super lightheaded a few minutes ago and took my BP and HR.  It was 98/70 and 133.  I should maybe give the Florinef another go, it was the best drug for me although it caused significant pulsate tinnitus. I did start a beta blocker, but it made me super super lethargic and fatigued, more than usual if that's possible.

Travel, it's super hard.

Sorry I've been absent, I travelled to see family (my brother and his family).  As you might guess, it was really hard, although great to see them.  I stayed long enough that I had time to recover there before the return trip (the travel days were brutal).  While I'm glad I went (so far) I doubt I'll be keen to do it again for a long while.

I managed two outings while there, and spent a lot of time in bed resting, just like I do here. And I had to navigate stairs multiple times of day (the guest room was upstairs), which is more draining.  It would have been imposible during my relapse.  Now that I'm home, I have no idea how long it will take me to recover.

I sat beside a woman with MS on my last flight home and we commiserated about traveling and visiting while ill.  She had what sounded like similar fatigue, (I mean it was really similar, I've never heard someone with an illness outside M.E. describe fatigue that is so similar). We could relate. I very rarely disclose, but I shared that I had an immune disease triggered by severe mono.  She had had to sleep on the couch at her daughters rather than a spare bed to avoid having to do stairs so often during her visit.

Once I recover a bit, I will write more. But the area where my brother and his family moved, is incredibly beautiful.  I spent a lot of time (when I wasn't in bed or visiting) sitting on their little deck with my feet up looking out at the lake in the valley and the mountains beyond.

Here's a photo from one of the outings.

The ups and downs

First, if you have M.E., fill in my new poll on the right.  I'm just curious how many of us have some form of OI.  My main issue is POTs, however I also have NMH (neurally mediated hypotension) which is basically just low BP when standing.  I think it's actually the NMH that causes me to faint on occasion. The OI has been pretty bad the last week.

On the other hand, I've had a couple pretty decent weeks M.E. wise, which is wonderful!  Milder flu symptoms and less weakness. I've been doing a few outings per week, short stuff less than an hour.  I've also been able to fit in a little art (printmaking).

Here's a photo of me and Tegan (I'm starting to show my age) from an outing about a week ago down the road to see the ice on Lake Superior.  We walked out just a little, there were a LOT of people out ice fishing, but I could tell that it wouldn't be safe too much longer.

And of course I'm still doing my daily PhD writing and editing session each a.m. from 1/2 hour to 2 hours.  Progress is slow.

And given the 6 week relapse I suffered this winter (and slow progress), we've applied for another medical leave, despite the fact that I've used up the four that are allowed.  I very much doubt they'll give it to me. I have found the university very unaccommodating for the most part…while the professors have been great, the policies are discriminating.

Basically if you are ill to the point of being disabled (unable to work), I don't recommend doing something like this.  I would quit today if I weren't so close.  As well, if you are too ill to work, it's a lot of money and precious energy to spend with almost no outcome (I'm as ill as when I started thus won't be able to work when I'm done).  Also, the time I've spent reading and writing could have gone toward healing and social, I have so little energy to go towards living life, and I've spent 6 years of it like this, alone with my books and paper, writing something maybe 3 people will ever read.

Anyways, these are the small details and frustrations of my daily life.  With the little bit better health the last two weeks, though, I am coping emotionally better with the day to day, not just constantly wishing it would end.  It's amazing how years of being ill can really weigh one's psyche down; also, how when my immune system crashes, usually so does my mood and vice versa.  Also sun….its crazy, but my mood is always better on sunny days (like today).

I am waiting to hear back on my most recent WBC, to see if my immune system is showing a little bit of improvement since the relapse, it usually does.

So I'm reading a book called "A Tale for the Time Being".  It's good, although I'm not completely wowed yet.  However, I keep finding these little jewels in the narratives, and this one (below) especially hit me.  It speaks to blogging.  Blogging is such an interesting phenomenon.  Why do I keep doing it? what need is it filling for me or anyone else?  While in the past, it has connected me to people who face similar health challenges, I find myself reading other blogs less and less.  Anyways, I thought this quote was pessimistic, but also insightful:

"It made me sad when I caught myself pretending that everybody out there in cyber-space cared about what I thought, when really nobody gives a shit.  And when I multiplied that sad feeling by all the millions of people in their lonely little rooms, furiously writing and posting to their lonely little pages that nobody has time to read because they're all so busy writing and posting, it kind of broke my heart" (excerpt from "A Tale for the Time Being by Ruth Ozeki).

Just for fun….

Sorry I don't have much to say this week.

But I did see this in the New York Times.  If you like solving medical mysteries, this might be fun.  First read the issues, then see if you can guess the condition: http://well.blogs.nytimes.com/2015/02/11/think-like-a-doctor-swept-off-her-feet/

Personal Updates: Searching for Balance

I've been blogging the last few weeks about the recent M.E. hype.  As you know, personally, I have problems with the proposed new name and especially the vagueness of the new definition.  I am not alone, I've seen a lot written about it by fellow patients as well as M.E. Drs and specialists.

On the other hand, the research out of Colombia University seems promising.  Their research involves  patients that fit a strict definition of M.E. (including immune symptoms, autonomic nervous system symptoms), making it more likely they will find abnormalities when they're compared to healthy controls.  And they have.

If you want, you can donate to their research….I think it's pretty hopeful.  I know, we are all stretched, wanting to give to different causes.  But if this one excites you (it's happening right now), here's the link.
https://giving.columbia.edu/giveonline/?schoolstyle=5881&alloc=21677

So I had a full month of relapse. I was horribly sick.  About a week ago (last Saturday) I felt it start to lift.  It happened over a couple days. I am now back to two or so hours every morning where I don't feel as viral, as heavy and weak. So what did I do after a month where I was mostly stuck in bed or on the couch, 95% of the time lying down?

Of course I over-did it.  I had a drive with my roommate to see the frozen lake Tuesday, and went to the bank on Wednesday.  I was crashed horribly both Thursday and Friday.  I lay on the couch both afternoons, really wishing my life would end.  I am so so tired of being ill, of it limiting my activity so completely.  I often feel very alone, suffering what feels like a severe virus all the time.  So often it's exhausting just to get myself food, get dressed, or talk on the phone.  I wonder why keep going? (I'm not saying I want to kill myself, more that I see no reason why I continue.) Sometimes I wish, if this is my life, can't it just end? Why must I suffer so much, be so disabled, feel so miserable and ill, from an invisible disease…a disease I can't fight back?

Still, everyday I try to find little things, little moments of joy to balance out the bad.  I try to push out the thoughts like: "I don't work, I'm a suck, a drain on society, friends, and family."  I try instead to laugh at the antics of my dog, enjoy the sun streaming through the window onto my bed, the birds eating at the feeder, laugh at a comedy on TV, immerse myself in a novel, enjoy my hour or two of writing each morning….I try not to feel my body, or look at the big picture, or think about the past or future.

If you're ill, how do you get through the sickest days?

These posts sometimes come across so heavy I think?  I do have better, less sick moments where I enjoy life to a degree. It's not all bad all the time.  Thank goodness I'm not always relapsed!!!! and I can do some little things, especially if I stick around home (minimize the outings).