Lets Go Whitewater Paddling?!! &&$%%$**%##

Too funny.

My OI symptoms were horrendous today and I've had multiple close calls (complete black outs without the faint).  Still, I managed to go to the local hardware store to buy supplies for the bottlejack printing press I'm building (a work in progress).

While standing in the small, local hardware store looking for stuff, someone shouted "Gail!" across the aisles.  It was one of those moments, you know the ones where it is taking every bit of mental and  physical stamina you have not to scream with the dizzy, sick, fluy, feeling?

Still, I was happy to see this person.

He asked if I still liked to paddle (he was also a wilderness guide for a sister organization to the one I worked for) and was talking about how him and his wife had been going out with friends to paddle lately at a local rapid (whitewater canoeing).

He asked if I wanted to come out to the rapids Tues. night.

Well, what a strange moment right?  I mean I barely leave the house, spend almost all my time in bed or laying down (I figured it out to 1-2 hours a day where I'm not horizontal) - and yet emotionally, I'm happy that I'm being invited somewhere, happy to see an old friend/acquaintance.  He obviously doesn't  have a clue how sick I am.... how would he... I live in my bedroom.

I said it might be fun to come watch if nothing else, trying to be sociable.  We talked a bit about paddling, and the printing press I was building, and then we headed off to our own projects (and me home to bed).

I mean of course I want to go paddling!!...it's not a matter of intention or desire, in fact I'm dying to go whitewater paddling...how cool would that be?  I'm even laying here contemplating what might happen if I was well enough to even get to the rapid (maybe a 1/2 hr drive).

If I managed to get there would I get in a boat?  My arms are very very weak not to mention the things that happen after I exert myself in any way (severe immune symptoms, muscle tremors and twitches, dizziness - although generally those symptoms bombard me 24-48hrs later).  How many days, months might I crash/relapse if I tried whitewater paddling?  And would it be worth it????? I haven't even been able to manage a meal out in months...I have trouble lifting heavy pots, standing, existing, really.

It was a pinhole peak into what I might have if I weren't sick....I'm very lucky to have a few friends left, but ultimately I have a very limited life.  If I were healthy I'd exercise, have a job/carreer, go out and socialize, join stuff...maybe a book club.  I might date, I'd always wanted to foster or adopt, I'd ski in the winter, in the summer I'd paddle, maybe rock climb again. Oh the possibilities (don't go there right?).  But I can't dwell on this...I need to not dwell on this!!!

This is the life I have; a sick, limited life.

How do I not hate my life?  I feel like such an outcast, such a failure...I want to blame myself.  That was what I did early on, for years even...that and push myself....but I'm past that phase.  I accept now that I never wanted this, I couldn't have even imagined something this awful if I'd tried.

People look at me: I don't look sick, they probably think I'm exaggerating or somehow weak in character and/or stamina....many have said as much. And yet, despite anything  I or anyone else believes, I'm very ill.  I wake up ill every day no mater what I tell myself, and unless I am fastidious about pacing, I get worse.  If I choose to put a smile on I'm ill with a smile on...If I choose to be angry and bitter, I'm still ill (and angry and bitter).

As Toni Bernard writes, whatever problems we have, this is just our life, right?  This is just my life.

(Here's a link to her post from 11 years sick - I found it inspiring: http://www.psychologytoday.com/blog/turning-straw-gold/201205/11-tips-11-years-sick)

In order to survive emotionally, I need to not crash too often as "not" crashed is bad enough.  I need to live in my bubble....that is what disability is, I guess...the more disabled, the smaller the bubble.

So instead of paddling I'll continue to build my press, one step forward every day.  I'll try to forget what might be or could have been if...if....

....if only - like the fact that I could have been going paddling Tues. night.

And thanks to anyone who made it through this rant (sorry)

Here's a print I did (block print) inspired by reading Watership Down this week...although they are hares, not rabbits.

10 years today

Well it's here - my 10 year anniversary of getting ill....of my life completely changing, of never having a day where the heaviness of illness isn't somehow affecting me.  I was telling my friend N., that I no longer remember what "well feels like".  Intellectually I know I was well for 30 years.  But my body memory is gone...it's been that long.

It was 2002 and I was headed to the airport to pick up a group of students for a sea kayak course (I worked year round for a wilderness school).  I was the course director (a glorified logistician) for a couple courses.

That morning I woke up and just didn't feel well.  I felt like there was an internal tremor or buzz running through me.  After driving the van to the airport, I remember standing in the airport organizing students and feeling very dizzy, off kilter.  I dropped the students off later that day to their instructors and lay on the floor of an elementary school classroom (one of our field outposts).  I had a chest ache, fever, and a dry hoarse throat....at this point I truly felt as if something was really wrong.

Ten years ago today that was.  I got sick on the Sunday, and on Tuesday I went to the local clinic.  Later that day the NP who I'd seen called to say my mono spot test was positive, I had mono.  She said that I should expect to be out of work for four to six weeks.

Well it's been ten years now...so much for four-six weeks eh?

Those who read this blog know the story...many of you having had similar experiences....Dr. to Dr.....still very sick, test after test etc.

I feel as if I want to say something important or insightful today, however, I can't think of anything.

I'm very sorry I got sick 10 years ago.  You will never get me to say I'm happy or grateful it happened. I lost almost all my 30's to illness.  I've been unable to work, pursue my passions and hobbies, socialize....the list goes on.

It's looking like my 40's may be even worse (I've been going down hill the last two years).  I feel sick everyday, the malaise and weakness equivalent to a really bad cold or influenza, or often much worse....and there is still is no blood test, no treatment, little recognition from the medical community at all that this is a serious illness....it's coming, but I suspect it will be years....

I've had a rough week (again), and there are days lately where I've had enough.  I go to bed at night and don't want to wake up.  (Don't worry, I'm not saying I'd take my life, I won't).

That being said, being sick for 10 years has come with some gifts or insights:

- Increased compassion for others
- an understanding of what true strength is (I see it all the time in my fellow ill sufferers)
- an improved relationship with some friends and family (despite drifting from the vast majority)
- a chance to learn to be alone and be ok with it - really enjoy solitude (although every thing has it's limits)
- a chance to observe little things that people with busy lives miss as I lay and look out my window
- developing my artistic side on my better days
- spending time with my dog
- doing lots of reading I'd never otherwise have done (not that I didn't read before, but I was a very busy person and my joys were more on the active side - canoeing, climbing, dog sledding, running)

What do you do on the anniversary of the most upheaving event of your life?  Eat cake? Try to forget altogether? Get drunk? Scream? What do you do if you had a sudden onset illness?

Crash

I'm crashed so hard today.

I made the mistake of going for a haircut.  I've been out only once this week to see my friend's new house.

I woke up feeling pretty bad today, but decided I was so sick of my hair, I'd go anyways.

One hour out of the house sitting in a chair and I'm crashed. Lesson: next time someone's coming here to cut my hair.

Of course it's not just the haircut.

I'm crashed from celebrating my birthday Monday (mind you at home and I didn't even stay up late) and probably a little from my parent's visit.

I feel sick all the time, but when I crash, I feel so so much sicker.

I lost it today and just cried....I want it to end, I don't want to feel sick anymore, I don't want to be trapped in the house, in bed, and most of all in this ill body.  I wish I could cry more often....it's something I have trouble doing despite how awful I feel sometimes.  Sometimes crying is the most appropriate response, plus I always feel relieved afterwards.

I SO hope it will be a short-lived crash.

I hate M.E.

Quick up-date

I don't want to jinx it, but I'm doing a tad better.

Even after a week-long visit with my parents I'm not terribly crashed.  (I still have to spend a good portion of the day in bed, but I'm just not quite as ill).

My roommate J toured my dad around the whole week doing errands: grocery store, yard work, getting gas at the reserve where it's cheaper etc. It saved me so much energy and I'm grateful to him.

My mom isn't too well so her and I were good company for each other.  She napped a fair amount (no where near as much as me) and we sat on the patio together visiting quietly, me in my outdoor recliner.  We even managed two games of scrabble (a favourite of ours).

Both my parents did the annual task of putting in my gardens.  Now all I have to do is some minor weeding and the harvest throughout the later summer.  We also attended to the native wild flower gardens out front (an ongoing project).  I can no longer call them dirt gardens as after three years they are starting to look a bit better. (I'll post some photos at some point).

I've had two more tests in the last couple weeks.  An echocardiogram which was very interesting.  The technician explained all the steps and measurements to me as she went.  It was neat to see my heart there beating as well as all the chambers and valves.

I also had a Cat Scan ordered by the rude, patronizing, gastroenterologist.  That was a less "fun" test.  I had to drink a litre of cold liquid with dye and then sit in a hospital waiting room for an hour.  Then they also injected me with a dye before the Cat Scan, an uncomfortable experience.  

I haven't heard back about either test yet so I'm assuming they were both normal.  I will get the cat scan results from my NP as I said I would never return to the Gastroenterologist.  I thought maybe the echo would pick something up as my OI is so wacky....and getting worse again with the warmer temps. 

My mom had a blood pressure monitor with her and my roommate J (who has a heart condition) and I had fun testing ourselves.  If I stood up for two minutes with the cuff on it would often "error" as my systolic BP would drop below 90 (this happened too, when my NP tried to test me with an automatic monitor).  On the ones were I did get a reading, my BP would drop 20 to 30 from taking it sitting (always under 100) and my heart rate would rise by 50 up to 120.

Overall, I'm not sure if my slight improvement is due to the B12 injections I'm taking.  I think it may be as it coincided with the start of them.  I'm injecting 2 000 ml 2X a week which is a lot.

I'm also FINALLY able to eat a bit more normal food.  I think it's a combination of time/healing and I'm taking ranitidine which is an H2 blocker.  I noticed no change with the proton pump inhibitor, in fact, during that month and 1/2 the pain was worse.  The Gastroenterologist said that the PPI not helping was "impossible".

After more than a month with no improvement my NP and I decided to try the H2 blocker ranitidine again (I tried it 6 mo ago and had noticed a small improvement).  This time I notice a very clear difference when I take the ranitidine.  It is an older fashioned treatment for ulcers and Gerd.  I'm still limited in my eating, however, there are parts of the day with no pain, and sometimes after eating something benign, like rice crackers or soup, I am without symptoms....for the first time since early December!