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).