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).