Books I Read in 2012

Here's a list of the books I read this year.  I starred my favourites.  As you can see, I tried to read some of the old children's classics I never read as a kid.  For example: Jungle Book, Watership Down, Wind in the Willows.

I am HOME!!!  Which is (I think) good.  And I survived Christmas in the south. There were challenges based the the situations down there (more to follow in a later blog), but on the positive, it made me realize that things could be a lot worse (they are for certain family members).

So if you are a reader, maybe you can find a good pick for 2013 in this list.

And Happy New Year to my blogging friends.

2012

1. I am number four - Pittacus Lore

2. The Jungle Book – Rudyard Kipling

3. David Copperfield - Charles DIckens

4. The Power of Six - Pittacus Lore

5. Lizard Cage - Karen Connelly

*6. The Night Circus - Erin Morgenstern

7. Dance with Dragons - George R. R. Martin

8. Orx and Crake - Margaret Attwood

9. Heart of Lies - M. L. Malcolm

10. I Am Number Four: The Lost Files: Six's Legacy - Pittacus Lore

11. Horten's Miraculous Mechanisms: Magic, Mystery & a Very Strange Adventure - Lissa Evans

12. Inheritance -  Christopher Paolini

13. How to be Sick - Toni Bernard

14. The Tiger's Wife - Tea Obriht

15. Seven Splendid Suns - Khaled Hosseini

*16. Watership Down - Richard Adams

17. Augusta Locke - Willian Haywood Henderson

18. The Tiger - John Vaillant

19. Sharp North - Patrick Cave

*20. Sweetness in the Belly – Camilla Gibb

21. Churchill on Hudson Bay - Agnes and Bernice MacIver

22. The Chosen – Chaim Potok

23. 100 Years of Solitude - Gabriel Garcia Marquez

*24. The Diviners - Margaret Laurence

25. Harry Potter and the Goblet of Fire – J K Rowling

26. The White Bone – Barabara Gowdy

27. Okay for Now – Gary D. Schmidt

28. A Good House – Bonnie Burnard

29. The Flight of Gemma Hardy – Margot Livesey

30. The Casual Vacancy – J K Rowling

31. Magisterium – Jeff Hirsch

32. Cat’s Table ­– Michael Ondaatje

33. The Sisters Brothers – Patrick deWitt

*34. Divergent – Veronica Roth

35. Insurgent – Veronica Roth

36. The Tower, the Zoo, and the Tortoise – Julia Stuart

37. The Virgin Cure – Ami McKay

38. The Prisoner of Azkaban – JK Rowling

39. The Kindness of Strangers – Katrina Kittle

40. The Maelstrom – Henry Neff

41. Summer of the Wolves – Lisa Williams Kline

42. The Hobbit – J R Tolkien

43. The Wind in the Willows – Kenneth Grahame

44. Plainsong – Kent Haruf

small miracles

First, I would just like to say thank-you to all who wrote and/or called to support me last week.  I was in a very low place.  And when I'm that low I usually feel very very alone.  I don't have a huge support network, but after receiving all the support I did last week, I realize I do have people in my life who care.

We've been facing grey day after grey day here.  I don't mind winter when it's snowy.  But I do not like that brown mucky pre and post winter time.  Well it rained and we lost most of the snow.  What's left is slushy and brown.  I woke up this morning and thought it must be really early because it was so dark out, but it was just the grey socked-in sky.  Isn't Thunder Bay supposed to be one of the sunniest cities in eastern Canada?  I could use some sun beaming through the window.

While I can complain about this dull, gloomy weather, on the positive side, the antibiotic vancomycin that I had to wait weeks for started to do it's thing after about 24 hrs.  It was amazing.  While the intestinal issues aren't completely gone, I'm not spending near the time sitting on the throne and since I started the drug I have not been nauseous at all....even once.  And I've been hungry!....I can't remember the last time I felt hungry like this?  On the other hand, I'm still having some intestinal pain and the drug is causing some pretty significant fatigue.....or is that just the M.E.?

Anyways, I feel like this drug has been like a small miracle.  I'm so glad I got it and a little amazed at how quickly it worked.  I really wonder how long I've been dealing with this c. difficile? Months? Years?

My roommate came down with what we thought might be influenza, but after less than 48hrs he's back on his feet so it must have been some 24hr bug?  I'm hoping with my low immunity that I don't catch it.  Fingers crossed.

It did remind me, though, how tough us sickies are.  Seriously.  He was so miserable (and rightly so); but as he lay there moaning I thought "we do this every day, for years!".   I wondered what would happen if I moaned and groaned every single day?  I think the few people I know would run in the opposite direction as fast as they could.  (To be fair, I do a good bit of moaning here on this blog).  But it did give me a moment of self respect.

Anyways, I thought I'd share that small bit of good news.

Imploding

You know when you can't stand your own life for another second?

Things here are kind of messed up right now (not my issues, but they affect me). But the thing is, I can't get away.

I'm too sick to drive anywhere and I have no money (enough to pay bills and I've already wracked up credit for Christmas).  I considered a motel but I'm just too broke.

I just talked to my parents about my visit south (which will be a kind of get away) and they seem to be completely clued out to how sick I am and what a challenge this will be.

It's no wonder people face such depression around the holidays.

To top it off, I really have no one to talk to as all of my (a whole of 3) local friends are wrapped up in this mess.

Its the closest I've come to wanting to just die for a while.  I mean if I were healthy and had a support network of people in my life, it probably wouldn't seem near as big. And no, I'm not going to kill myself but after 10 years of laying around sick, suffering and useless to the world, I can't imagine being too upset if my upcoming MRCP shows cancer....

It's just too much right now.  I'm depressed.  I almost always get depressed this time of year due to the low light thing, but this just hit like a brick after doing pretty well for a while.  At least I went a few months not hating my life.

You know I realize life wasn't perfect before getting sick, and had I stayed healthy, I still  would have had challenges.  But it's just too much.  I miss having power over my own life.  I think this is the main thing that is bringing me so low at present.  Power to go for a run or exercise, socialize, make friends, work, make a lot of choices that just aren't even an option.  I'm just so sad and fed up.

I could really use a kind word at the moment from those who know what it's like to go through life dragging around an ill body.

I'm just ready to be done with my life....I see no light at the end of the tunnel.

As for the c. difficile, the form to get the drug covered is still out there somewhere in paperwork limbo.  I've improved a bit with whacks of probiotics enough that I'm eating OK for the most part so I'm not too worried to be honest.  And I feel as if I have no advocate anymore for my health.  I realize I was lucky to be a patient of the only full time specialist in the province....but now with her gone, I feel as if I'm facing this monster of an illness completely alone.

Positive for Infection

Five or six years ago I had a c. difficile infection.  I was having intestinal distress and pain (more than the usual that seems to come with this illness).  I went to a walk-in clinic and for a change, I had a nice thoughtful Dr.  He had me do some tests and they called me later to tell me I had c. difficile.

The antibiotic for that is usually Flagyl.  It's famous for making people nauseous. The Flagyl made me vomit so much that after 3 1/2 days I had to stop treatment.  I had a great Naturopath at the time who told me to take a potent fermented probiotic called BioK.  My repeat test a few weeks later was negative so I assumed it worked.

Well as those who read this know, I've had serious intestinal woes after 2 infections last winter.  The second infection (in Feb.) felt a lot like the c. difficile, but at that point I was negative.  My NP and specialist gave me more tests to do in the summer, but I didn't bother.  I was frustrated with lack of answers.

In  a moment of intestinal distress and weakness this week, I went ahead and did the tests that were sitting in the cupboard because I didn't see how this problem couldn't be an infection?

Well it turns out I was positive for c. difficile toxin again.  Unfortunately the social welfare disability I'm on won't cover the other drug (non-flagyl one).  So now I wait until Monday to see if there is a way around it, or some program that might cover it for me.

I picked up a pack of BioK in the mean time.

For those who haven't heard of it, c. difficile is famous for its hospital outbreaks.  In its most toxic form, it can kill people.  Milder infection just causes diarrhea and intestinal pain.  It usually hits after someone takes an antibiotic.  The antibiotic wipes out the good bacteria in the gut and the c. difficile then invades.  The toxin created can cause major bowel inflammation, even perforation.  In my case (I've only taken antibiotics once in over 20 years and that was for the c. diff) I figure it's just the fact that I'm immune compromised.

I was so frustrated today because I tried to go pick up the BioK myself (I often can't manage errands).  It's only 2 blocks away (I drove) and only one person was in front of me in line; but I came out dizzy, shaky, weak, and crying it was so awful.  I'm pretty sure it's the OI as I had a couple sessions of seeing stars this morning when standing up.

How can I be this sick?  It's so frustrating - my useless body.  I hate that I have already lost 10 years of my life to this sickness and it doesn't seem to be improving.  I'm so frustrated with living my whole life mostly laying down, trapped in this stupid house.  I want to do a simple errand.  It's ridiculous, I'm 41 not 101!

To top it off, there is some drama going on here and I can't even escape and clear my head because I'm trapped here by my body, in this house.  More than anything I could use a run like the old days, or even a drive.

Taking Stock

Well it's been just another week.
I haven't been well, but it hasn't been terrible either.
I HAVE been bored.

When I do an activity I crash or feel terrible.  But at the same time, just laying around all day is driving me mad.  Life is so bland.  I've been trying to combat this with little online in-bed type projects.  I've ordered some Christmas gifts, read, worked on my passport renewal application (for all those trips I dream of taking - yeah right!).

There are a lot of annoying symptoms plaguing me these days.  I see little point in discussing them with anyone as firstly, it makes me sound like a hypochondriac (the symptoms are so wide ranging and plentiful) and secondly, I've had so little useful help from any medical professional I don't see the point.

So I thought I'd list them here just to give myself an outlet.  But I will balance them by trying to think of some things that are positive in my life.

Annoying:

1. I have pressure/ throbbing in my right temple....sometimes worse than others but it drives me nuts.  It sometimes hurts and seems to be connected to pressure in my ear as well.  My guess is that it's a vascular thing, maybe even related to the OI....e.g. inflammation of a blood vessel? Does that happen? My NP thought maybe neuritis....I'm so sick of it.

2. My stomach issues are ongoing and almost constant.  It's frustrating and uncomfortable in many ways.  On the positive though, it's not as painful as it was for months there.  The MRCP of my pancreas is happening in mid December.  Hopefully it comes with some answers and solutions if that's possible.

3. My throat hurts esp. every night.  A lot.

4.  My muscles are weak and shaky and pathetic if I try to use them at all.

5.  I feel fluey and sick most the time, but I look 'great'

6.  My shoulders hurt a lot lately.  I'm pretty sure this is arthritis from all my years of physical type work (chopping wood, canoeing, dog sledding, back packing etc.) rather than related to the M.E.

7.  I am dreading Christmas with my dysfunctional and often unsupportive family.  I have never managed that trip without a crash.


OK, well that's enough complaining I think.

What's good?:

1.  I'm pretty happy with some art I've done this year, it's been a good year that way.

2. My dog is ever faithful and good company and entertainment.  I'm so glad I'm not alone all day everyday as I convalesce.

3. You know, I'm pretty lucky to have a warm safe space to call home. I remember having no home or income for several years...it was rough on top of being sick...always being a "guest" with someone and constantly trying to figure out where to go next when each welcome was up.  And I know people going through the disability process right now.  Not only is it emotionally tough having to take stock of everything you are unable to do (everything you've lost), but it's a scary place to be financially as well.  So I'm glad I don't have to face that again anytime soon.

4. I've been enjoying some short outings and super short walks without crashing which is something.

The "chronic" in chronic illness

warning: long, meandering, kind of complainy post - read at your own risk.

Have you ever had the experience of a friend or family member getting acutely ill?  Maybe it was cancer, or a car accident,  a heart attack or appendicitis?  Well very often friends and family "rally round" that person with support and empathy.

Sadly, it's different when you have a chronic illness and especially M.E.

For starters, when an illness is chronic, people loose patience with the ill person.  Who wants to be supportive, empathetic, and helpful indefinitely?  It's a lot to ask.  Life goes on...that's just the way it is.  People need to engage with their daily lives (work, family, activities, social) and can't be rallying support around the ill person indefinitely.

I remember the first year I was ill being amazed that while I believed my role in things was so important/essential, everything I had my hands in seemed to continue on fine without me.  And after a year or two, my presence in my social and work life was becoming something of the past, while I slipped into the insular life of daily illness and its subsequent restrictions.

I had a really bad week last week, feeling terribly ill and fluey every day.  The post art/printmaking crash I think.  It hurt to breathe, sore throat, dizzy, and beyond exhausted.  I cried when I tried to hang some plastic on the windows.  My arms were shaking.  For hours afterwards I watched as my muscles twitched and I felt significant pain.  This was probably after less than 2 min using my arms.

Today, the sun came out!!!! We've had a grey week.  I went outside to pull a few weeds and felt my chest/breathing ache come on immediately.  I went from squatting to standing and had a black-out and my arms almost instantly began their neurological madness along with the weakness.  I was instantly out of breath.  While I had been feeling only mildly ill laying in bed, the rush of "illness" that came on when I tried to do something was overwhelming.  I was like "wow, I am SO sick.  How can I be SO sick everyday for so many years?  How is this possible?".

I mean if a healthy person were to have that experience, it would blow their mind how sick and weak they were.  I don't know how else to say it? As weak as the worst day of a severe virus.  But those of us with M.E. live with it every day, sometimes for years and years.   Can you believe this is our 'normal'?

If they would get rid of the "chronic fatigue syndrome" label it would help with people's awareness and dare I say potential for empathy or understanding.  Part of the problem is everyone feels fatigue in life so people hear "chronic fatigue syndrome" and  immediately they think they understand.

But the fatigue of M.E isn't anything like "normal" fatigue.  The only comparable fatigue I felt as a "well" person was the fatigue of influenza....or Mono.  Not even my worst cold virus can touch the fatigue of M.E.  And that's saying something as I could carry an 80 lb canoe a km without a break and I trained for and ran a 1/2 marathon the year I got ill.  Do those experiences come close to the fatigue of M.E.?  They don't even touch it.  It's like if someone told you they had stomach cancer and you said "oh yeah, I know what that's like, I had the stomach flu once"....but no one would ever say that, would they?

I never use chronic fatigue syndrome anymore.  I refuse to.  I also usually refuse to tell people what I have at all.  I just say "an immune disease" which is perfectly true -- or else I avoid it all together.  Of course it's not like I'm out meeting all kinds of people so it doesn't come up too often.

My friend Sh and I were talking today.  (She is a phone buddy/support who also has M.E.)  We got to know each other early on in the illness for both of us, mostly through email and phone.  Early on in our friendship, we were both convinced we would get 100% better. We were both fairly young (late 20's for her, early 30's for me) when we got ill.  We were both physically very active, living full happy lives when we got hit.

Along with talking to someone who fully understands what it means to endure this  illness daily, we always share stories of the ridiculous things people say to us and the assumptions they make about us because we don't "look" ill.

We were also discussing how things have changed over time.  Now that we've been sick 10 years, we are no longer considered 'young people'.  We now have a resume of seeking help from the medical field (of all things), of "laying about" for years on end.  We are now middle aged women with a history of chronic illness, a smallish resume in the real world, and a history of 'complaining' and failing in society.  It definitely shifts how people on the outside treat us.

Not only that, most the people we meet never experienced that healthy well woman we once were, so they only know us as low energy, introverted, unsocial and cautious people.  They have nothing to compare us with to see the vast contrast between who we were, and who we are now.

My point in all this babbling being mainly that it sucks to have this illness.  Mostly because, as my old specialist said, "you guys were born 50 years too early".  Medicine doesn't yet have the knowledge (or on the whole the desire) to investigate or treat us.  And while I've read several times that there are over 4000 research studies that have found biologic abnormalities in M.E., I have yet to meet a Dr. outside of my specialist who has read one of them.  Because of this, we are generaly dismissed by both the medical establishment, the public in general, and unfortunately often by our own friends and family.

My other point, is that despite being sick 10 years, sometimes I'm still surprised and taken aback at how sick I am.

That being said, I'm crossing my fingers for a better week this week.

Being a "Gracious Receiver"

When you are sick, it seems there is a greater need to depend on others.

Let me first say that I am a "fiercely" independent person.  I like to do things for myself.  I love the feeling of being self-sufficient and strong.  I have been this way as long as I can remember.  As a young adult I don't remember anything more exciting and satisfying than packing my car and heading out on the road to whatever the new adventure was (new job, new rock climbing or canoeing or backpacking trip, university).

On a similar vein, I also hated when (especially older) men would assume I couldn't help with a physical task.  One of the phrases I detested the most as a young person was "can I get some strong male arms to help with....."  I grew up in a fairly conservative community and this was sometimes a daily expression, one that seriously angered me.

For one, there are plenty of strong women out there as well as plenty of less strong men.  And what could encourage young women not to engage their physical selves more than hearing that over and over?

One thing I did as a wilderness instructor was to avoid these gender stereotypes (as well as discuss them with groups).  The female students on expeditions were taught and expected to do all the same tasks (portaging a canoe, fire building, navigation, cooking, sawing and chopping wood) as the male youth.

In fact, I remember coming across an all-male group one time on a canoe trip where the young men were complaining and carrying on about how hard canoe travel was (paddling and carrying packs and canoes all day, the bugs, the weather etc.).   It just happened when we met them that the 15 and 16 year old female students in my group were carrying the canoes on that portage (in a practiced and skilled manner after a couple weeks out no less) and their mouths dropped wide open as they watched.  It was fun to watch their reactions to seeing that these young women were perfectly capable physically when given the chance.

I saw time after time not only young women understanding how strong and capable they were (and gaining self confidence from it) but also the young men changing how they thought about the physical capabilities of women.

But what's the other side to this story?  While it's great to gain self-confidence and self-esteem by feeling capable, what do you learn when your aren't physically strong or capable?

When you are sick and to some degree disabled, if you want to get things done, you often have to swallow your pride and ask for help.  The longer I've been sick, the better I've been at accepting that there are things I either just can't do, or else can't do without help unless I want to endure an increase in suffering.

One great example is grocery shopping or almost any shopping.  I can force myself to do it on a good day, but it is rare that I do it and don't crash 36 hrs afterwards.  It is rare that I can stand in a line without feeling dizzy and fluey and terribly ill (I don't know how else to put it).  So I have learnt to accept help (probably not always graciously).

After years of encouraging young people to see how capable they are, helping them to build self esteem and self confidence, I often feel my own slowly diminishing away over time as I need help with tasks that seem very small.

This past week I went to the art studio where I print my block prints.  I had two friends along and one of them helped me immensely with the printing process.  I think it is the first time I have printed at the studio without being reduced to tears of exhaustion and frustration at some point.  For one, on the whole, my health held out.  I had two afternoons where I wanted to sink into the bed and die I felt so sick afterwards, but I still managed to get to the studio each day and work on stuff.

The point I'm making in this long post is that with help, I was able to accomplish some prints that I'm quite happy with.  And I never could have done it alone.  First, if I had driven myself to the studio, I would have been too crashed to print (even riding in the car the first day I had tremors/internal buzzing for hours afterwards).  While at the studio, I had someone bringing me food and coffee, inking my blocks, and cleaning the blocks and bayers afterwards.

So while I believe independence can give us a sense of self-worth and self-confidence, learning to accept help can also have rewards.  In this case I had company while printing which in and of itself was  fun.  And while I felt selfish that those days were kind of about me and my art, I'm also happy that I accomplished so much (4 prints in total).

When I first had mono (about 6 months in) and my world was initially crashing down around me, I went for some counselling.  One of the things I was struggling with was that I couldn't do anything (I still struggle with this).

The counsellor I saw said that I was one of these busy people that filled every minute.  I was used to being capable and doing for others.  However, she explained that maybe being sick could be a chance for me to let others do stuff for me.  And more importantly, she pointed out that I could learn to be "a gracious receiver".  She said that when we are gracious in our receiving, we are giving a gift back--because who really wants to help someone who is all ungrateful and cranky?

I think that woman was wise.  Those words have stuck with me for ten years. And not that I do a good job of being a gracious receiver, but I do try.  Because she was right.  Giving and receiving is a two-way street.  And that's something I'd never really thought about as a young adult.  And now, when I get to know someone, or observe interactions in those I do know, I am more aware when I notice someone being a skilled receiver.

The other very wise idea that councelor shared with me was the idea of small gifts.  She observed that I wanted to make a big difference in the world (at the time I was involved in an expedition that would raise scholarship money for youth), but she encouraged me to see how important small gifts were.  For example, I may not be well enough to work, or cross the arctic by ski and dog team, but I could do the dishes, or write someone I loved a letter.

The point of this post isn't to say I AM a gracious receiver, more that I see the importance of it.  Also, that I no longer put independence and physical strength on a pedestal the way I once did. I realize that every individual is tied to all those others in our community no matter how independent or self-sufficient we think we are. (That being said, more than anything, I would like to be more independent and self-sufficient again).

But most of all, at this moment as I lie in bed crashed and ill from my printmaking, I am feeling very grateful to my friends J and S who helped make it happen.  I'm posting two of the prints we worked on.  One will be framed in panorama style with a dark matte, the other is inspired by my camping in August.

Tests and Results

Well I definitely crashed from my day of outings.  Two in one day, more time out of the house than I usually do in a week.  I'm much much sicker today.  I feel weak and fluey and my head feels full.  No big surprise really.  At least I got to talk to people at the pot luck and saw a good movie.  Was it worth it?  Well I think so even though it doesn't feel like it at the moment.  I hate M.E.! I hate being sick!

I saw my Nurse Practitioner (NP) this morning to follow up on some bloodwork.

I am now just out of the anemia zone again (121) - 120 is the low end of normal, so that's good news.  However, my iron (ferritin) level dropped despite all the iron I've been taking??? I'm now down to 7 (10 is the lowest end of normal).

The most worrying result was my WBC had dropped again to 3.1 which is definitely leukopenia (4 or 4.3 are considered the low end of normal).  My neutrophils were 1.4 which is mild neutropenia.  They discussed it (my NP and her supervising Dr.) and decided it wasn't anything to worry about because they believe it is just part of the ongoing low grade infection I have related to M.E.  My WBC drops, then it goes up, then it drops.  It's been going on for years.

Not that anyone knows what the infection is in particular, which to be honest, really bothers me!  We will check the WBC again in a few months to make sure it doesn't plummet further.  If it does, I will have to be careful about catching and fighting off infection.  I mean I do have to be careful, but I'm not in the zone where an infection will hospitalize me.  The only finding today was my continued swollen glands, especially on the right side of my throat and "it looks viral".

I am also being sent for an MRCP which is basically another MRI scan that focuses specifically on the pancreas and the related ducts to see if they can pinpoint what is causing issues there.  To rule out cancer again, but also possible strictures or stones or evidence of pancreatitis etc.

Despite feeling awful, when we checked my blood pressure, it only dropped 10 on standing after 2 min.  She did prescribe me florinef which I'm considering trying as I occasionally faint - although I'm starting to wonder if that is more the POTS than the NMH.  I know for sure I have both despite the fact that I can't always call them up on command in the Dr.'s office.

Self Destruction M.E. style

Do you ever feel yourself going crazy from all the restrictions?  If I have an outing sometimes I'm sicker that day and virtually always sicker 36 hours later, the effects sometimes lasting for days....weeks.

I live a life trying to minimize these terrible crash days.

But right now I'm loosing it!  I'm going crazy from living life in a box, spending most my day in bed, my evenings on the couch...all in order to ward off the awful flu symptoms and severe fatigue and weakness.

But today I'm going to be crazy.  I'm going to go to a movie of all things and if I can drag myself, to a potluck tonight.  You know I haven't been out to a restaurant for a super/dinner meal in over two years?  And I've only made it to a friend's for a dinner maybe 3 times this year?

What a way to live.  And speaking of friends, how am I supposed to make any or keep any if I can't do anything?  Or when I do something I feel miserable so I get cranky and am not fun or nice to be around.

Well today I'm breaking out of my box, I'm going crazy.

And I'm going to read this post later and KNOW that I made the choice and should live with the consequences without complaining (too much).

Infection connection

As you know, I usually blog about once a week.  For some reason, I've been uninspired this past week or so.  I don't feel as if I have anything new or interesting to write about.

I've just been plugging away at day to day life, trying to walk the balance of doing SOMETHING, without being active enough to make myself sicker....Sometimes I am successful in this mission, other times not.  For example, the last two days I was terribly crashed, but today I don't feel too bad (and am employing heaps of willpower trying NOT to overdo it).

I keep lists and put very superficial little tasks on the them as well as bigger ones (bigger ones being things like paying a bill or a needed outing e.g. the Dr. or the bank).  When I'm able to check my little check boxes, it gives me the illusion that I've done something with my week.  It makes me feel as if my daily life is not all for naught.  Kind of ridiculous, but there you have it.

I checked a lot of boxes this week.  Today, for instance, I had to get some bloodwork done to check my mild anemia and my white blood count (WBC).  I was sitting there at the lab (wishing I wasn't) and unfortunately after she (the phlebologist) injected the needle into my arm and filled the first tube, the blood stopped coming. So she jammed the needle around under the skin trying to find the vein for a while and asked if it hurt?  Finally I suggested we try the other arm.  So arm one was already bruised.

In my left arm she hit a vein right off but it started leaking under the skin.  She asked me if I was on blood thinners because my blood seemed thin?  (I wondered if this were true or whether she was feeling the need for an excuse?)  When she finished with the left arm the blood was just oozing out and I had to ask for a second cotton ball to soak it all up.  We sat for a few minutes while I applied pressure and finally it started to clot.  So I came home with two bruised, sore arms.

However, to put two measly needle pricks into perspective, I woke up this morning and my armpits were just aching and pumping.  I say pumping because sometimes I can feel the lymph flowing in that area of my axillary lymph nodes, especially when they are tender.  So with that soreness to deal with, the needle bruises seemed minimal. And to put it into even greater perspective, none of it was all that painful.  I am actually both very lucky, and very thankful, in that I experience almost no pain at all with M.E. except a sore throat and painful lymph nodes.

Sometimes I wonder how people do the exhaustion, fluiness, dizziness, and weakness with cognitive dysfunction and pain to boot!!!  That being said, I've been told many times by well meaning 'well' people "I could never face what you face everyday!", "I could never stand being that sick!"

.....well it's not like it's a choice?  What is my choice?  I can live with being this sick or not live at all.....so I choose to live and manage as best I can.  But for some reason I find that statement annoying because if that person came down with M.E. they wouldn't have any choice BUT to try to manage as well.

I'm sure it's the same with those in chronic pain....

So why did I title this post the "infection connection"?  Well I can't help but think after 10 years that I have some kind of ongoing infection.  I mean why else would my lymph nodes hurt and my throat blister and swell?  Why else do I still get fevers?  What better explains my low WBC or chronic gastritis or more recently my dilitated pancreatic duct?  Obviously there's more to it than infection (infection doesn't explain the OI or the tremors), but I can't help but think it plays a pretty big role.

"What day is it?"
"It's today," squeaked Piglet.
"My favourite day," said Pooh.

- A. A. Milne


“Forever is composed of nows.”

- Emily Dickenson

Those of us who are sick, journey through life sick.  (Isn't that the statement of the century?)  It's life, but it's just more of a struggle than when we were healthy.  We have to give up so much of what we want to do because we just can't manage physically.

Despite this, we still have a life, it's just life in a sick body.  Since it's a sick life, it's best to make the most of the few decent moments we're given.  I want to live in the present but I often lay in bed feeling like crap thinking about the future and what I might be able to do if I improve, or if a treatment somewhere down the line helps.  It's hard not to want to live with our heads in a possible future when the present is so tough.

I had such a great week.  I mean some sick moments and disappointing ones, but I did a couple little walks with the dog and I didn't feel so awful every moment.  Once I made it to my favourite nearby city park with a creek.  I was sitting on a rock throwing sticks for the dog.  It was one of those days where the dark clouds mixed with big patches of deep autumn blue sky and sun.

I was listening to the creek and smelling the smell of the fallen leaves (most of them here are down).  The tamaracks, however, still have their needles and they were a brilliant yellow.  The sun, wind, creek, leaves, tall yellow reeds, earthy leafy smell, etc all coalesced to the point where I felt full with the world around me.  Almost magic.  I felt so present in the moment and place.  Happy. 

But today it all came crashing down.  I haven't been sleeping. Last night I kept taking another half pill hoping dreamland would take me.  For me, less than 9 solid hours of sleep can be a trigger for worsening M.E.  My roommate was out until 2:30 am and I couldn't seem to sleep until he was home.  I finally dozed off feeling drugged and awful by 3:00 am.

Today I woke feeling terrible.  My good week ended with a bang.  Back to the reality of this stinking heavy illness and all it's lovely gifts.  Sore throat, body ache, groggy, very weak.  I tried to lift something and felt really hot.  I took my temperature and it was around 100 F.  Yes, a fever to top of this crash.

You can see the yellow tamarack in the distance

Now had I not tried to enjoy the week, had I not gone to my place, I may have not crashed.  Then again, I may have.  But I wouldn't have had my moment of joy, my moment of wonder.  So now I wait and suffer and try to take my mind off my body that is screaming at me and hope to all hope that I get another good week this year, or even another good day. 

Posting a few photos of this nearby park.

Another week

"Life is full of misery, loneliness, and suffering - and it's all over much too soon." 

 - Woody Allen

I've had a decent week.  A whole decent week.  Especially when I'm just laying in bed reading or on the computer, I've felt less fluey, heavy, and weak than I can remember in the past year. (My gut is in terrible shape, but that's another story).

That being said, I tried to pick up three items at the grocery store a few days ago and if felt like I was dying....I was quickly reminded that, yes, I may feel a bit better; but no, I am by no means healthy or functional in the world.

Still, I've done some short little walks with the dog as well as a little editing this week, so all and all, nothing to complain about in the big scheme of things.  Since I got ill, fall always has been my best season.

A wrench in the plan

I am contemplating how completely different my life has been since coming down with a disabling chronic illness.  Not only is my life completely different from what I ever imagined, it is also a life in stark contrast to the lives of the healthy people I know.

When I was younger (mostly in my 20's) I was very active.  I had a job that involved being physically engaged (wilderness guide/outdoor educator).  I had a bucket list of goals/hopes and I expected I'd be one of those "older" people I knew that still skied, mushed, ran, socialized, worked, volunteered etc.

I expected I would continue on the path of an active, productive, healthy and useful human.

But it is not just those of us that are ill that have wrenches thrown in the paths of our lives.  I realize all kinds of things can happen that change the "course" of an individual's life.  Death of a loved one, loss of a job, an economic depression, in some countries war, or perhaps disaster (fire, earthquake, flood, hurricane).

You think you are on one track, and all of a sudden, you are on another (with little choice in the matter).

One of the hardest things for me the first few years was loosing the identity that I had attached to my work and lifestyle. I thought being an active outdoorswoman was who I was.  I "identified" with all the things I did.  So when I lost my health and my career, I also felt I'd lost my identity.

As well, when you are sick and feel awful every day, when everyday is a struggle physically (which of course affects the mental and the emotional), you feel a shift in your personality....well at least I did.  Sue just wrote a great post about the everyday grind of being sick here: http://livewithcfs.blogspot.ca

I am no longer active, or busy, or employed.  Rather than energetic, light and friendly, I so often feel heavy and cranky and impatient.  Someone recently pointed out how I'm much more of an intellectual than a people focused person.  It hurt.  While I've always enjoyed that intellectual side, the last 10 years my lack of sociability is by no means a choice. When social events or outings are so draining, you tend to avoid them.  Being too sick to leave the house is also a huge deterrent to being social. I have even turned from an "extrovert" on personality tests to an "introvert".

I've been thinking about this in relation to a friend reunion that is happening this week.  It would a be a 4 1/2 hour car journey (one way) to attend. There were some real efforts to bring it closer to where I live that didn't pan out.

I had thought I'd wrangle the rides I needed from people to attend (I can't drive far without awful consequences), but on a crash day this week as I lay in bed feeling the worst of the flu symptoms and weakness I thought to myself,  "this is just not worth it to me.  I don't want to be laying in a strange space, feeling like shit, wishing I were home in bed".

It wasn't the physical that most worried me, it was the emotional fall-out from the physical crash.  Also, the idea of being amongst some of my favourite people, but laying in bed in another room too crashed to enjoy it. (This has happened so many times I've lost count).

You know, I would have thought that after being sick for 10 years, I'd be tougher.  But instead, I feel as I have less tolerance for suffering.  When I crash, I lay in bed, not wanting to move or breathe because the deep breaths hurt so much.  If feel as if I have so little patience left for this illness.

The first few years I was sick I pushed hard all the time to do these things - to remain the person I was.  I remember driving 20 hours (two 10hr days) after recovering from the flu no less, in order to see these same women off on their trans sub-arctic dog sled/ski expedition (the one I had helped plan and had so hoped to go on).

I remember being so sick the day after the drive that I fainted trying to get out of bed the next morning.  I remember sitting in the restaurant the night before they left on their journey shaking with fatigue and fever but "toughing" it out.

But I just can't seem to do that to myself any more.  I don't know why?  I am so different than I once was.  I am so different than an average healthy person let alone an active one. My life is so night and day from what I'd expected.  I live like a 90 year old. I have so little energy.  I have to plan out every little thing in order to avoid consequences.  But this is my life.  It's the one I've got, the one I have to navigate.

I would like to do something again.  For three falls I taught at the university a few hours a week and managed OK.  I loved feeling at least slightly useful.  I liked the social interaction and sharing a bit of my knowledge with young adults.  I found I gained energy from them.

Right now I'm mostly resting, mostly homebound.  I spend the days literally resting, and also surfing online, watching movies, reading.  I am doing some art again which in some ways I consider work.  Especially if I can occasionally create a piece I like enough to give as a gift.


p.s. I meant to post this last week, but hdk has a great post on her blog with a poem at the end about Joy and Sorrow, and how the one, is a necessary contrast, allowing us to feel the other.  Check it out: http://chronicfatiguechronichope.blogspot.ca/2012/09/peace.html

Results: More questions than answers

I have good news.

I do not have either pancreatic cancer or lymphoma!  Well that's a load off, although recent research shows that one of the lymphoma drugs can really help some with M.E., so that wouldn't have been the worst thing.

My MRI results were mostly normal except what is called a mild dilatation of the pancreatic duct.  What does that mean?  Exactly, what does that mean? Well my NP didn't think it would cause symptoms, however, I did a little Internet research and it seems it can cause symptoms similar to pancreatitis.

The other thing (stay away from the Internet) is that people with this condition have a much higher incidence of contracting pancreatic cancer. http://jjco.oxfordjournals.org/content/32/10/407.full

Scary.

I guess we will all die at some point, that's a given.  But pancreatic cancer is one of the quickest ways to go  - something like 90% die within a year. Ouch.

What's the next step?  They may or may not send me for another test (I didn't figure there could be any more!).  It's another imaging test that is done by a surgeon.  They are deferring to the gastroenterologist to decide if this next test is needed.

Also, from what I've read, I bet there will be some followup imaging in my future at least to monitor for cysts/cancer in my pancreas?  I guess I don't really know.  I wish I had someone with medical expertise who could shed a little light on this for me.

Otherwise, I've had a fairly decent week.  I've had some more days where I've been able to do a short outing here or there.  And I finished a block print. I'm almost embarrassed to show it here (as I know I can do better) but I'm sucking up my pride and posting a little photo of it anyways.

As well, I've posted some photos of the river from last week (which I sure payed for, but only two days of crash which could be worse).

Sad

I find with this illness, the sadness comes and goes.  When I'm functioning low, feeling terribly sick, it's almost like there is no room to be sad.

I've just come through two weeks where every morning I wake up, think I might be a little improved, then an hour into my day realize it's the same heavy flu and fatigue.  It's been so challenging just to mentally get myself through the days.  At the same time, I've had little choice but to lay around all day.

Then the last two days, I finally picked up.  It was such a glorious relief yesterday when at 11am I wasn't feeling deathly ill.  So did I rest, and store up those good hours?  Did I put my energy (money) in the bank?  No, I started working on a print (I do block printing). Then in the evening, my roommate took me on a drive to a beautiful river rapid and we sat there as the sun was setting.  The aspens are brilliant yellow right now, the red osier dogwood and blueberries red, it's the peak of fall here.  The dog swam and we soaked in the view, then we drove home watching an almost full moon the whole way.  It was magical.

Today I woke and had another of these precious days....a day where all my mental energy isn't taken up  coping with the physical.  So I worked on my print again and got my hair cut (two outings in two days).  My hair has been driving me mad for a month, but I haven't had a single day where I felt up to going out for a cut.

So I should be happy.  This is freedom for me right?  But instead I'm feeling really sad.  Sad that my life is so empty.  I want to disappear.  I watch my roommates come and go, seemingly able to do what they please.  I know this isn't completely true....I mean they have to go to work and school.  They have to take care of tasky stuff like shopping and mowing the lawn (which I can't help with).  But they can also go for walks, out to movies, out for meals, shopping, driving, socializing, saunas, etc....

It's rare I can do any of these things and when I can, they are usually miserable experiences, if not during, then for days afterwards.

So there is the small sadness of the little things, but even bigger is the sadness for the larger ones.  I have no partner, haven't dated in years.  I have no children (which I really wanted).  I have no job at present, and I feel useless.  I live off the government.  The most "giving" thing I do is phone my parents weekly, or the dishes, or send an occasional letter or package.  I feel like a useless lump in the universe.

And I look to the future and have trouble hoping for or wanting anything.  I'm just sad.  And my instinct is to be alone right now.  I want to be away from people, away from everyday life and having to witness all the things I'm missing.  I'm tired of this sick body and having to lug it around.  I'm tired of people telling me I don't look sick.

To top it off, I didn't get my results from the MRI which means now I have to wait until Monday to find out if I have cancer....there, I said it.  I know it's probably not cancer, however, I don't know that for sure.  And if it is, I just want to know and get on with things.  I don't want to wait three more days with that hanging over me.

I talked to a friend who's daughter had the same MRI as me two days before and she got her results yesterday, so I'm guessing/hoping by Monday or Tuesday.

I'll post some photos of the river outing soon, there are some really nice ones.

I'm still here

I haven't felt like I have much to say, hence the week and a half since my last post.

I'm holding the status quo with health these past two weeks.
I have had some little ups and downs.  I've also been managing a few short outings a week.  I do crash a day or so later (about 36 hrs later), but then after a couple of days, I manage another little outing.

Today I had lunch with a friend which was great...but afterwards I came back to bed in tears I felt so terrible.

A good analogy of living with M.E.  is to compare energy or decent moments to money.  People with M.E. have almost no money (energy) to spend.  And for some reason, activity of any kind (phone call, visiting, lunch out, a bath, etc) costs 5X as much money for us as for a healthy person.  We are so easily depleted.  Sometimes I get sick of the fact that everything nice comes at such a great cost.

This is the week of my MRI.  I feel weird about it, like if I talk or write about it I may jinx it.  I'm not looking forward to it, but if it's like the rest of my medical past, the results will be normal or "inconclusive" anyways. I'm not looking forward to being jammed in a loud small tube and given contrast (re: toxic) for 30-45min.  Thankfully, this time next week it will be over and that will be that.

Decision made for me....how nice.

Well I decided I just may try to do some PhD work this fall.  As my one roommate will have a schedule again, I figured it might be quiet enough around here for me to both rest and fit in a few hours a week of "at home" reading and writing.

So I registered online, and then today looked into re-instating my funding.  It turns out this is something I have to do at least 8 weeks prior to starting back up.

Decision made!

After an awful week it was a big sigh of relief to be honest.  I think it was some kind of "meant to be" thing.  But then the scientist in me says, "Well, it's that you were so unenthused about  trying to work while feeling ill that you didn't do your homework".  Either way, it amounts to me having another semester of medical leave.

I've been feeling so weak and fluy.  Despite this, I have been pushing to do a few things that seem really important right now.  Nothing exorbitant, just stuff that has me out of bed an hour or two more than usual.

I had a really bad cold two weeks ago and it definitely triggered this decline.  As the cold eased up, the M.E. got worse.  It happens to me about half the time when I get a virus.

The bad sick patch is also messing with my mood as per usual (I'm feeling both very sick and very down).  And to be honest, really alone.

Why doesn't this get easier?

I feel so terribly sick.

I wish somehow this got easier over the years?

I'm on the dregs of the cold - lingering dry cough and mild congestion - but I feel as bad, if not worse than when I was full virus.  I'm much more fatigued, weak, and out of breath - fluey.

But the sore throat is improved, back to M.E. normal, fever is down.

This happens to me with about 1/2 the cold viruses I catch.  I crash hard afterwards.

I saw my NP on Monday - I had a l.g. fever at the time and swollen glands.

We went over bloodwork from June where I was actually mildly anemic (low hemoglobin, low iron and low red blood cells).  Not surprising as I had gone four months with barely being able to eat.  At the time I also had mild neutropenia.

We re-did my bloodwork Monday and my WBC and neutrophils are in the normal range again (I expect as I was fighting this cold).  Also, my iron had hit low normal, and the anemia was almost gone.  I was 118 on hemoglobin and 120 is normal, albeit low/normal.

But while it's good to know that stuff is a bit better, it always bothers me that my tests don't show things terribly out-of-wack.  How is it then, that I can do the dishes (sitting on a stool) and then need a 2 hour rest in bed to recover?

Sick Week

While not unexpected, I've been pretty sick this week.  Remind me that it was worth going on that trip, OK?  I mean it was, but I'm just not feeling it today.

After getting home I was crashed, but not as bad as expected.  Then within days I came down with a nasty cold virus.  My body did not like this one from the onset and I've had a low grade fever with the cold the whole time.

Today, day 5 of the cold, my fever got to 101 F mid-day (don't ask my why I use Fahrenheit, the only time I think in Fahrenheit is body temp for some reason).  Last year around now, I was told to go to emergency if my fever was over 101 due to my neutrophils and white count being low.  At last count in May, they were low, but not as low as a year ago.

Luckily, I have managed to bring it down with some tylenol and rest so hopefully I'll be avoiding that place I detest (hospital) for now.

To boot, it's PMS time.  I feel like I've been hit with the triple bus: cold, crash and pms.  An adequate reward for tying to do something worthwhile I guess.

Oh, and I went for my 4th ever massage this week too (a short one) because my lower back was in such a state I couldn't bend over....at all.  Or roll over in bed.  Perhaps one shouldn't go from laying in bed for most of a year to camping and canoeing, even if it is very low key?

The massage therapist was amazing.  I was worried mostly about the outing, but also the aftermath of the effort. But it was worth it.  She said she only did very localized gentle work on me (my lower back was strained enough it actually had a pocket of swelling in it).  The next day, while still in pain, it was 50% better.

I'm needing some good vibes and thoughts to kick this cold and just make it through this week!

I'm supposed to see my NP in the morning to make a decision on doing a little part-time work this fall (PhD).  I was going to go for it, but at the moment I'm not feeling like doing more than sinking 10ft down and disappearing into the mattress.

Taking a Leap of Faith - Wilderness Camping Sickie Style

So I had been planning a canoe trip for a year.  Well, not a canoe trip really, more of a wilderness camping trip.  But I wanted to be in the wilderness and as I can barely walk, the only access that I could  possibly manage was by canoe.

During this past year (as well as other years) I've been laying in bed looking at maps and photos and nearby parks and wilderness areas on google earth, trying to figure what the easiest (for a sickie) most worthwhile trip could be.

I spent time making lists of what I would need.

We (my roommates and I) had planned it for a week in August to that they could help me pack, drive me there, and then pick me up.

I started packing about a month before hand.

Two weeks before the trip (after a decent July) my health took a plummet and I thought, "There is just no way, I am too sick".

It was my roommate's momentum  that got me there.  I was in tears of fear and just sick/fluiness the day before and the day of departure.  They picked up the canoe I'd rented (the lightest one I could find), and got my stuff in the car.  I was still on the edge, feeling too awful to deal.


But on the morning planned, I dragged myself to the car.  On the drive I was feeling waves of sickness but at that point my excitement was also building.  Sick or not, crashed or not, I was going.  I thought "All l have to do is paddle a few meters up the shore, drag the boat on shore, and lay down just like I do at home".

Well, to make a long story short I'm SO glad I went.  The big effort really was the drive out and back.

I spent seven nights in one of the most beautiful wilderness areas I've ever been to and that's saying something.

I did spend most my time flat....but flat on the rocks looking out over the lake and islands....flat on my back looking at a sky full of stars, or the sun setting over the horizon.  I read a lot, journaled some, napped lots, took little dips in the cold clear water of Lake Superior.

And I was barely lonely.  I had some trepidation about the solo part of the trip, but really, I've been on a long solo the whole time I've been sick. I mean I spent more than 4 years living a lone mostly trapped in my house, too sick to go out....so this was nothing.  I enjoyed the peacefulness of it, the complete lack of stress.  I didn't want to leave at the end.

I'm not going to share all the details of the experience, but I'll share some photos instead.  And I'm planning on doing it again next year already.  Sick or not, this sickie can camp.  Admittedly, I needed lots of help (all the shopping, the shuttle, and some of the packing)...but if I can muster it again next year I'll be out there again.

heading down the coast, someone's excited

sunset from the tent

there was lots of napping on rocks

gorgeous coastline

clear, blue-green water

photo session at sunrise

sunrise on the creek

caribou tracks in the sand 

favourite camping spot with a view!

'group' photo