A visit, some art, and decent days!

I have been so much more resilient lately.   Some bad days for sure, but overall better than usual.  Most of the late summers and early falls since I've been ill have been my best, healthiest time of year.

Why?  Well I've pondered and pondered this to ad nauseum.  Now, I just accept and enjoy it.  On the other hand, unlike my first 5 years ill, I don't think it means I'm getting better.  For more than a few years, every autumn I'd think, wow, I'm getting better, this is it!  I would get my hopes up about getting my life back, only to have them dashed to bits when I'd relapse or slide into worsening health again.

I had planned to visit family this summer.  My parents are aging and their health is not great.  On the other hand, I am at the borderline of being able to travel anywhere very far without major repercussions.  But I have done it and managed before.  I try to get down here once a year if I can.   Travelling to my parents involves a 1 1/2 hr. flight followed by an hour drive.  Door to door the trip took 5 hours this time which is a lot for me.  I always get a window seat so I can at least rest against the wall of the plane.  This time, I also 'preboarded' to avoid any extra standing in line.  Honestly, I'm NEVER going back.  Why put myself through standing and being dizzy when I don't have too?

So anyways, I am now down visiting (which at the moment means laying in bed here instead of at home).  So far I'm exhausted and a little fluey, but not much worse than usual which is great.

The week or two before I left I worked on implementing my leave from the PhD for the fall and also plugging away at a piece of moon art.  It took 3 drafts of this art to get something I liked.  It has definite good and bad points to it, but overall I like it.  (Especially the water with the moon's reflection). While I really enjoy having the art to think about and work on when I'm up to it, I'm by no means a gifted artist.

I was born into a family of 5 (I'm number 4), and two of my brothers are extremely gifted artistically.  Partly because of this, I was always intimidated by art growing up.  It's a long story, but in high school I took an art class and had an amazing teacher who helped me appreciate that I could enjoy and feel successful creating art.  I toyed a bit here and there over the years with it, but only really took it up again when I got ill.

I got sick in 2002 and in the fall of 2003 I bought a "learn watercolour painting" book and went through the lessons as I could.  I set up a little table by my bed and any time I felt up to sitting up, I would work though a lesson.

A few years later in 2006, some friends and I got a local artist to give us a clinic on printmaking and that's when I started playing with it as a medium.  It was hard to do in long spurts, I remember both times getting together with friends to print and being brought to tears because I couldn't manage to sit up long enough or do as much as I'd hoped.  I remember carving and my arms feeling super weak and shaky, or standing at the press and feeling dizzy.

These days I'm set up at home so I can work in spurts.  I have a little home press and I do all my design and sketching in bed.

Art has been one of the few gifts of my life with chronic illness.  It's a way for me to create something and feel productive.  It's a distraction from a life that feels 'failed', and a body that's always sick and complaining.  It also allows me to express my love and passion for the wild places where I've traveled....but can rarely visit any longer.

Medical Leave Again

I've decided, if I can, I am taking another medical leave from the PhD....I just need to go through the steps to get it sorted (Dr. signature/letter, advisor and department approval, postpone my grant funding again).  It would probably be easier to just stay officially enrolled, but my conscience isn't dealing with that very well right now. (For one, I've done nothing at all on my PhD stuff for a month).

I am going to take the fall off and just rest, hangout, do art and try to make some progress mentally with this illness.  I don't think 'doing nothing' is a good idea as this always seems to spiral me into depression.  To be honest, I can still work on finalizing my research proposal, just without any pressure of being enrolled and receiving grant funds.

I may be pulling out of my post-trip crash just a little, but it's been tough mentally and emotionally this past week or so trying to cope with feeling so ill and exhausted/weak most the time.

So over the next week or so my 'job' is to try to get this leave of absence sorted/figured out.  Also, maybe to enjoy a little sunshine in the backyard.

I did a small 4x6 print over the last week or so and I wasn't happy so much with the colours.  However, I'm sharing it anyways as I like the composition and feeling of movement portrayed.

Thanks to all who read this blog and support me from afar.  And I hope my fellow "M.E.ers" are doing alright wherever you are on this journey of chronic illness.

A Moment of Being Fed-up

So I pulled off the wonderful camping holiday.  And I did more than I should have, and managed it all OK...and even told myself it meant I could do more in my regular life.  Then I came home and a couple days later crashed (not completely unexpected) and I'm still crashed (knew it was a possibility).

I even have an old symptom back, one that makes me sound crazy (although with googling it, it seems to be something common to lots of illnesses like Parkinson's, MS, Fibro, Lyme Disease) and it's the internal buzzing/tremor.  I had it when I first got mono and it was pretty persistent for years. Then I had periods where it eased off and a for a few years now I only get it occasionally.  Anyways, I've had it the last two days and it drives me nuts!

I've also been feeling terribly fluey and awful and sick.  My armpit lymph nodes are sore and my throat starts hurting earlier in the day.  So of course I'm doing lots of resting and feeling frustrated and fed up with my body.  I tell myself it could be worse (it could) and I will probably get back to normal with rest (which is still sucky, but less so).

And my only thought in all this is how darn tough everyone who suffers this illness is!  I mean really, if you are reading this and have M.E., give yourself a pat on the back just for getting through the day and not blowing your lid from frustration/hopelessness.  We endure so much while "looking great".  We have almost no help from the medical establishment and little real understanding of what's causing all this suffering.  We are often isolated and have to give up so many things other people take for granted.

I managed vacation....a few photos.

Well I 'survived' vacation.  It was wonderful.  And I did WAY WAY more than I usually do.  I had some 'deconditioning' issues, I pulled muscles both in my lower back and both quads (thighs)....but it could have been worse....they are healing up already.  And what did I expect going from mostly home bound/laying down most the day for a year to being active (in sickie terms) for 7 days!

Not that there wasn't an awful lot of laying around, there sure was.  I did my (hopefully annual) laying on various surfaces such as cobble beaches and sand beaches and big granite slabs of rocks.  I saw loons and eagles and sand pipers and heard and saw lots of birds I couldn't identify.

I journaled and read (2 1/2 books) and drew and took photos and lay in the tent an awful lot listening to the waves lap on the beach and rocks and the wind in the trees and a few times the rain patter on the tent (but mostly it was sunny or just cloudy).  I also spent an entire day laying on the beach feeding a small fire and looking out over the expanse of Lake Superior.

And I canoed some which is very ambitious given how ill I am/have been.  And I felt less ill camping this time than I did when I went last year, despite the fact that prior to camping this year I was sicker/iller than last year?  Which is so hard to figure out.  How am I supposed to make sense of this body when the rules are always changing?  Often, going on a 1/2 hour errand can crash me sometimes for two or three days, then how did I manage a week of camping including some canoeing without a major crash (yet)?

Does this mean I should push myself more at home? Try part-time work even? Or does it just mean I had a decent week and got lucky?  Pushing myself in most cases has led to crashes and relapses....although, I'm thinking I need to wait a few more days before believing I really got away with this.  It's not that I don't feel sick and tired, just no worse than before I went.

The OI was pretty bad and I almost passed out more than a few times...which would have been a bit scary all alone.  Although, all the times I have passed out/fainted in the past I have been alone at home anyways.

So I guess 'pulling off' this vacation means I really am (at least for now) back into the mild moderate M.E./CFS zone or even the severe end of mild? having been more severe moderate on the scale for the last couple years....which is great.

Explanation: I consider severe M.E. to be completely bed-bound and often in a darkened room, sometimes in a care facility (when I saw an M.E. specialist for years, this was the situation for her severely affected patients).  I see moderate as disabled, unable to work and anywhere from often bed-bound, to being able to do some short outings now and again.  Mildly affected are those who are still clearly sick, but can work or attend school full or part-time and are able to do most ADL (activities of daily living) which include self care such as bathing, shopping, laundry etc.

As for the vacation, I have a tan and 'look' healthy, and I met some new very nice people and reacquainted with a family I used to know which is huge given how isolated and alone I am much of the time due to being homebound and too sick to socialize.

canoeing down the river

sunset over the lake

a day on the beach by the fire

enjoying a fire

I layed on this rock for a day and 1/2 (beside the cabin)

friend's cabin 

I spent some of the time 'camped' at one of these family's cabins....which was remote and absolutely gorgeous.  I also had rides/drives both ways and I didn't actually have to carry any gear to or from a vehicle.  I did have to set up my tent of course and cook my meals (or eat snacks) and that type of thing.  Also, the few nights I spent 'out' I had to pack and unpack my bags which is why I say I was so much more active than I normally am in a day.

So far my conclusion is that it was a great and nourishing vacation.