Happy Holidays!

I just came across this today, and I teared up watching it. It's Laura Hillenbrand talking about Unbroken and a little about having M.E.

Slightly annoying though, despite the fact that she specifically says that these days the condition is called M.E. or myalgic encephalomyelitis,  in the subtitle cbs calls it "chronic fatigue syndrome".  As soon as that old name is used, many people dismiss the condition as simply 'fatigue' or not a real disease.  Someday, someday, the media will actually use a proper name for the disease!!!

Anyways, it's still a really good interview.

http://www.cbsnews.com/videos/unbroken-author-opens-up-about-her-own-personal-struggle/

Also, while I can in no way compare myself to this amazing writer, I did find some parallels of how she manages to write/work and how I've managed to do my PhD studies and research from home, despite the disease.  Phone interviews, working from bed. And I don't suffer vertigo to the extent she does. Speaking of, I should be working right now, not writing a blog he he.

Friends came up for Christmas from Minnesota which was really nice.  Not only that, I wasn't crashed and felt pretty decent the whole time which hasn't happened at Christmas in ????? many years?!! They were here the night of the 23rd until mid day on the 25th. Perhaps it was partly that I wasn't crashed from having traveled for a change.

I didn't have a bad day until the 27th. We ate good food, like really yummy food, and worked on a jigsaw puzzle and visited.  Also amused ourselves with the antics of their dog who is this enormous black lab-ish dog.

I hope all of you also had a decent Christmas?  This week we have New Years, but I doubt I'll do more than watch TV, probably alone. As far as resolutions, like it or not, I have to try to hammer out this PhD this year.  I just can't stomach continuing much longer with it, I'm just sick of it. Also, I will be out of funding come August.  So cross your fingers that this winter is exceptionally productive for me.

Here is a holiday card for you.  It's a print I worked on for a while and I like the overall effect.  It's supposed to be the perspective of looking up through the trees at the night sky (and aurora).

Holidays and M.E.

I think that the holidays are a hard time for a lot of people for a lot of reasons. While some people have a good time celebrating with friends and family, with so many expectations and societal (and sometimes family) norms around how a holiday should be, if you don't fit in the box, the holidays can enhance feelings of isolation and sadness.

Perhaps you are just alone without family or friends to celebrate with, or with family, but mourning the loss of loved ones. I remember the first couple years after my sister died, Christmas was hard because she had been such and integral and happy part of our celebrating.  We felt he loss more poignantly around Christmas.

When you are ill enough to have to curtail social stuff, travelling, and celebrating, then mix this in with the expectations of family and/or the bombardment of media portraying certain ideas about the holiday, the holidays can be a difficult time.

Toni Bernard wrote an article about coping with isolation (both physical and psychological) dung the holidays, it's quite good: http://www.psychologytoday.com/blog/turning-straw-gold/201111/how-ease-the-pain-isolation-during-the-holidays

My holidays this year are going to be super relaxing.  Presents are all bought (online) and sent, and I will spend some time AT HOME!!! Some of it alone, some with friends, eating, visiting and resting.

While exhausted, I'm not terribly fluey, which is nice. I'm still fighting the end of this nasty cold with a persistent cough. As well, I am quite dizzy/spinny from the cold I think, enough that I can't drive for the time being.

THE DOG: If you are interested in the dog, Teagan does have uveitis in both eyes, and will need to be on meds (steroid eye drops) at least for a while.  She has had iris cysts for a number of years, but recently one of them turned very red, which is what signaled the need for a vet trip.  The hope is that if I treat the uveitis we can avoid glaucoma which in the case of dogs, often results in the removal of an eye ($$$) or very expensive meds.  Cross your fingers for us.

Fighting...

Having a nasty cold with M.E., then barely sleeping for night after night, is no picnic.  I feel today (maybe?) I've turned a corner.  I slept a little at least.  And the cold seems to have eased a bit, although I now have a cough.  I woke last night at 3am and my face was sopping wet from tears, my sinuses were letting loose.

I feel like my body is fighting hard right now, and I'm pretty wiped out.  And the only time I've been out of the house in over a week is a 10 min trip to the bank a few blocks away (I drove).

I'm laying in bed, drinking tea, with the dog beside me on her back, legs splayed and comfortable.  She is great company.  Unfortunately she's been having some eye issues and we have to make another trip to the vet in the next week or so for a test…I may have to beg, borrow and steal (literally) to come up with the funds.

At one point I thought a great charity to start would be a fund for companion pets for the ill.  That way, if you made almost no money due to a disability and/or illness, you wouldn't have to fore go the company of a companion animal.

I don't know how I'd survive so much time alone and ill if it weren't for the company of my dog.  But when my last dog died, I couldn't even afford to have her cremated, and with this dog, it looks like she may have a genetic eye disease meaning more $$$ for her care, money that I don't have.

On to nicer things, I spent a month and a half on a print.  It's a triptych of chickadees in some birch trees with either a snowy hill in the background, or the shoreline of a snowy lake.  After all that work (I'm not done yet either), I got something that's just Okay. I was hoping I'd just love it, and the proofs got me hopeful.  But that's how it goes with art.  And I won't be doing any for at least a few months while I try to tackle my dissertation this winter.

Down for the count….

I know I'm always saying M.E. (for me anyways) is very viral.  Sometimes it takes me a couple days to know if it's just an immune crash or a cold virus.  Well after more than a year and 1/2, I have a full blown cold. It's the same body achy, low energy, sore throat, but the sinus stuff is different with a cold, and the throat was bad enough that it woke me at 2 am the other night and took a long while to get back to sleep (eventually I had to resort to pain killers).

This cold makes me think I have less stamina than I used to.  I used to just get on with things when I had a cold (work, activities, whatever), but I'm feeling like a complete wuss this time round.

On the other hand, were I able to choose between a cold and a crash day, hands down I'd take the cold every time.  The feeling of ick and malaise and weakness is so so so so much worse with a crash than a cold.

On the plus, it seems to be a fast and furious virus and day 3 has already moved into sinuses.  If I can avoid an ear infection and a cough, I'll be happy.  But my productivity has gone way down.

Otherwise, nothing is new.  I've been working on two prints for over a month now, but they are slow going.  I'm also working on PhD almost every day, but haven't managed to do a 10 hour week since October, pathetic.

I'm pretty homebound at present, but not feeling as much cabin fever as I usually do when I'm unable to get out for a long while.

Because I'm not travelling to see family at Christmas this year, I feel like a huge weight has been lifted from my shoulders.  The process of travelling, then dealing with all the family dynamics while ill, can be so overwhelming and depressing.

I do it almost evey Christmas because it has always been the important holiday for my family, and I know it means so much to my parents for me to come…but I can't tell you the sence of relief I have this year knowing I don't have to force this sick body through the whole ordeal, including the usual recovery which often takes more than a month!!!

This year, very unChristmasy, I'm putting myself and my health first. How about you? How will you accomadate yourself to manage the holidays? Or will you? I know it is a very tough time for most who suffer chronic illnesses.

How I Spend My Days...

I want to write a post, but really have nothing new to tell or report.

So I'll share how I spend my days:

9-10 a.m. Wake up, make coffee and feed the dog, go back to bed with coffee, check emails…chill

10:30-12: This is my best time of day, so I work in bed on my PhD stuff.  Right now, listening to my 16 interviews and starting to draw out themes and ideas. I try to work an hour a day, sometimes 2.

12:00: Bathe or shower if I have energy, get dressed...perhaps do the dishes…eat

12:30-1 or 2: If it's a good day, some art sitting up. Very occasionally, an errand. Maybe go to the back yard and fill the bird feeder.

2- 5 p.m.: Back in bed.  My sickest time of day. Read, rest, surf online. If it's a decent day I'll get up for a few minutes here or there to do a little task.

5 p.m.: Do some dinner prep if I'm up for it.

5:30 - 10 p.m.: Move to the couch for TV watching and eating, maybe Skype chat with a friend.

10:00 - 11:00 p.m.: Back in bed, read, fall asleep.

On a bad day, I spend less than half an hour without my feet elevated.  On a good day, maybe 2 hrs, tops 3 hours not laying down or on couch with feet up.

Wow, seeing it listed like this makes me realise how little I do!

Due to side effects, I'm back to a 1/2 dose of Florinef, which does nothing for me.  I've been very tachycardic this week, with major POTS symptoms.  We'll see if my cardiologist is any help when i see him tomorrow.