Quick Hello.

Hello to my readers.

I have returned home to the northland (north is relative) from visiting my parents, and am recovering from travel.  I'm also without a car (it has no breaks) which is a good thing.  It means I can't run out and do even a small errand, and therefore am forced to stay home, rest and recover.

I'm not having a terrible crash from my trip (yet).  I'm not feeling great either, but nothing extreme.  On the other hand, as often happens in the summer, the POTS is terrible.  Just a quick walk out to the back garden had my heart rate at 165 and BP 99/70.  I checked it when I came in the house as I had that  'desperate' feeling I get, like I just have to lay down (shaky, head pounding, light-headed).

My gardens are coming along, meaning I may get some veggies in late August and September, fingers crossed.  Watching my plants grow is one of my favourite things about summer.

And I will (at some point) post a few of the photos I took at my parent's.

Here's a little photo and video of a rabbit at their place in the mean time.

I am making progress on my dissertation writing, it is slow going, I'm not happy with what I've written on the whole, but it's getting there nonetheless.

Happy Sickaversary to M.E.

Well June 16th was the day I came down with a bad case of mononucleosis in 2002.  While I was stressed out at the time (I had a lot on my plate) I wasn't physically ill until Sunday June 16th 2002.  It wasn't like feeling "off", it was like being hit with a brick in the head.  Fever, sore throat, dizzy, shaky, sweating.  So it's my sickaversary.   I've been ill every day now for more than a decade. I'm a completely different person due to suffering a disabling case of M.E.  But it was so long ago now that I became sick, it's hard to remember that other life.  I had no idea how lucky I was to be able to work, play, socialize, drive.

I've been visiting my folks who are getting quite old, and are in poor health.  However, there's not too much I can do to help as I'm ill myself, and not up to outings.  I brought the dog down which makes for a slightly more strenuous travel day, although having her here is wonderful.  She provides me with company, entertainment, and emotional support.  I'm SO glad I brought her.

I had a horrible flight down as the gentleman in the seat next to me took up a seat and a half he was so large, quite literally, he was using 1/2 of my seat.  (The plane was completely full, so no chance of moving).  I had to sit cross legged with my torso turned sideways for 2 1/2 hours.  Our destination airport was shut down temporarily as well, so we had to sit on the tarmac in T-bay for a 1/2 hour before flying. My body cramped up so badly, that it took a while for me to walk after the flight, not to mention the severe tachycardia from POTS.  However, after two pretty bad crash days, I was mostly back to normal, which is still sh$t, but not so ill that I was laying here all day just hoping I'd die.

My mom, despite being on oxygen for severe emphysema, has manged to crawl around dragging her oxygen tank and to some degree maintain her amazing gardens.  I call this the "nature preserve" as my parents feed a variety of birds out front year-round as well as rabbits, chipmunks, and squirrels.  Then add the manicured lawns and flower gardens!  Maybe I'll take some photos to share.

I love how when you have a chronic illness that involves weakness/fatigue, people in your life seem to constantly tell you how tired they are. (I've heard this a lot this week).  On the one hand, I don't mind lending an ear, I've really appreciated lately a few people who've shared their health challenges with me. I don't mind hearing about others' struggles with health or energy. On the other hand, when someone tells me they're exhausted as if to compare, in most cases I realize how clueless and in some sense, unappreciative of their health and abilities these people are.  As well, how clueless they are about the type of weakness/fatigue from which I struggle. It's when they think they're commiserating that I get cheesed-off.

I watch these people run multiple errands, go to work, talk on the phone for an hour, eat out at a restaurant, drive, go for a run or walk, cook meals, bathe, all in the same day!!! etc. etc. I am amazed how oblivious they are about true disabling exhaustion.  Lucky them.  While I have no doubt they are "exhausted", really, I believe they are exhausted,  I know for a fact that it isn't anything comparable to what I suffer. If it were, they'd be disabled…so weak from illness that they'd be un-able. Unable as in, even if they  "have to" get something done, they wouldn't be able to…they'd be too utterly exhausted and weak despite good intentions or amazing motivation - hence dis-abled.

Blossoms and Birthdays

I thought I'd post a few photos of some flowers that are in bloom around the yard.  I love the neighbour's crab apple when it blooms each year (some of the branches are in my yard).  In the front garden, the moss flox are in bloom.

This time of year I constantly over-do it putting in gardens, despite the fact that I have lots of help.

On the positive, as the temps warm up I get to spend more time outside, as I don't have to move to stay warm.  I can just plop myself out there and enjoy the sun, the birds, the trees and flowers.

So far (we're only an hour or two in), I am less ill than I was on my Birthday last year.  Last year I had a horrible crash that coincided with my Birthday and left me feeling really down.  This year (so far) I'm not feeling as horrible. Small blessings.

Finally, the daughter of someone I know wrote a good article about M.E.  One of the best "popular" media type of articles I've ever seen. It doesn't say, for example, that M.E. is about "being tired".   It gives snapshots of how severe and devastating a disease it can be.  The other thing I liked, was the perspectives that came out of her personal connection to the illness (her mother has it).

http://www.vice.com/en_uk/read/this-is-the-reality-of-living-with-me-162

My PhD writing has taken a dive this week as I had a really bad attack of "urinary tract infection" that kept me from sleeping.  I put UTI  in quotes, because it's all the symptoms of a UTI without being a UTI.

It coinsided with an appointment to my NP, and she sent in a culture and perscribed an antibiotic because the dip test was borderline.  To be honest, I've had these attacks for years, usually during PMS, but they mostly just last a few hours.

This bout is still happening although it's calmed down.  I'm almost sure I have cystitis, but since I don't want another syndrome like condition added to my chart, I've avoided talking about it to my NP.
 Mostly, I've been able to cope, although if makes a habbit of keeping me from sleep, I might have to see what options are available.  Does anyone who reads this have IC?