Things to do

I have a lot of things to do.  Mainly working on my PhD.  However, as I haven't been home for even a week, I've done almost nothing.  It was over ambitious of me to think I could do observations for my research.  I traveled twice to see programs this summer.

(My research is looking at the experiences of wolf educators in North America - surprisingly, there are a lot of programs and centers dedicated to wolf education and conservation).  The bulk of my study is interviews with educators which I conducted from home over the phone in June and July.

Anyways, my observations were a bust for a lot of reasons I won't go into (some of the reasons relate to the fact that I'm quite ill).  I pretty much told my supervisor there is no way I could attempt any more observations. Instead, I'm going to try to get another one or two interviews.  While it all sounds very engrossing (I'm sure), in reality, what I'm doing these days is mostly laying in bed feeling horrible.  Like really ill.

Which makes me wonder if I'm feeling especially bad as a consequence of the travel and/or being away from home?  Then I argue with myself that  I was feeling poorly almost my whole time away as well, I don't think I'm much worse.

Next I start wondering how much to push myself to do stuff (not big stuff, just little around-the-house tasks)?  While miserable and ill, I still managed quite a bit over the last month.  Should I continue to do stuff despite being home and feeling so ill?

I find all I really want to do is lay around…lay in bed or on the couch.  Sure, I have the excuse that I'm sick and weak enough that I have to rest after making my bed or rest my arms after brushing my hair or teeth, but should I allow myself to revert back to complete sloth? The problem with that is how lonely and unfulfilled I feel. Doing little things keeps my mind busy.  It is a constant battle to find a balance - to do as much as I can without making myself sicker/worse.

I made the mistake after an August of feeling horrible, to waste my energy with a medical appointment this week. I saw my Nurse Practitioner (who is very supportive).  But the reality is there is nothing she can do for me except confirm I still have some swollen nodes and lend an ear while I complain about how sick I am.

For some reason I get annoyed by those people who whine and moan in the waiting rooms at the Dr's office (children excluded).  I think to myself, come on, toughen up a little (I know this is pretty unfair considering).  However, I was so exhausted and sick after the drive to my appointment (15 min) that while waiting for my appointment, I was leaning against the wall with my eyes closed, I even rested my head on the magazine shelf! I  considered either leaving or laying on the floor I felt so awful.

In reality, I wouldn't actually lay on the floor of a waiting room, but do you ever (when you are super unwell) inadvertently look for the nearest place to lay down?  Early on, I even lay in a dog bed at a party once.

My NP was very sweet, asking if I'd heard of any new treatments for M.E.  I enquired of her if she could think of any reason why I am so so much sicker in the afternoons, but she didn't have much (we are testing my cortisol levels).  I know I've posted this poll before (on the right), but I thought I would again just to see what people's (with M.E.) sickest time of day is.

And the medication my cardiologist gave me to try for the OI (Orthostatic Intolerance) clearly states NOT to use if you have gastritis or ulcers and I wanted her advice (since my ulcers and/or gastritis is flaring).  I'm going to postpone my upcoming cardiologist appointment until I can heal the ulcers and actually try the med.

I've been watching Master Chef this season and when the one contestant was eliminated this week, as he left he said: "you learn from the past, you live for today, and you dream about the future".  I really liked it for some reason so I thought I'd share.  I try to remind myself all the time, that today is the only day I'll ever get.  While I can learn from the past, it's best not to dwell on, or live in the past.  Similarly, the future can be something to dream about, but since it never arrives, it's best to spend most my time living today (sick or not).

I think it's a quote often credited to Einstein with 'hope for the future' (although Einstein has been credited with a lot of things he never actually said).

A good article

Here's a good article from the New Yorker about one woman's experience with autoimmune illness.  But it completely relates to us M.E. sickies as well.  Just the whole idea that many immune type illnesses don't fit clearly into a category.

http://www.newyorker.com/magazine/2013/08/26/whats-wrong-with-me

Chronically Ill

I'm so sick. M.E.'s an unpredictable, unrelenting, life sucking, rat bastard!!!!!

The Contrast

I'm not sure if any of you sickies find the contrast between your life and your (relatively) healthy friends and acquaintances lives, one of the harder things to deal with?

I travelled (again) to do research for my PhD in the town where I used to live and work.  This is a much shorter travel day, involving no planes or unnecessary standing.  Still, even just sitting up that long in a car is hard.  I was holding back tears at the end.  I had a nasty gut infection (AGAIN!!!) the two days before I travelled and was still recovering from it the day I came south.

Anyways, the outdoor school where I used to work, was having their 50 year staff reunion over Labour day.  Unfortunately, I've been horribly crashed almost since I got here.  Still, there were friends (really good friends) attending that I hadn't seen in more than 5 years. So I tried to go to the reunion for a few hours to visit.  Well it was wonderful on the one hand, but after only an hour of sitting up, I felt so horrible I had no choice but leave and lay down.  It was like trying to syphon gas from an empty tank…impossible.

It was so frustrating I can not put it into words.  I tried to not feel overwhelmed by feelings of guilt (why am I so weak? why can't I push through just to sit here and visit?) and embarrassment (I must look like a complete wuss, over-reactor) but mostly deep sadness (I'm not well enough even to sit and visit with some of my best ever friends).  I realize that if I'd come here and completely rested for a full week, I may have been able to attend a little more, and my body may have 'stood up' better.  I spent a lot of the weekend laying in bed wishing that I could be part of things.  Also wondering why I'm still alive?  I feel so ill that I am sometimes surprised it hasn't killed me, this disease.  And if I can't participate in the world, why exist at all?

Now to address the title of this post: the contrast.  Sometimes when I live in my own little bubble, my protected world, I  almost feel that I am a functioning human being.  But when I try to 'do' something out in the world e.g. grocery shop, travel, attend an event, even sit up to visit with friends, I am faced with the stark contrast between my life and the lives of similarly aged acquaintances and friends.  And when I am faced with that contrast, I realize how limited and hollow my life is.

Watching friends and acquaintances, especially those with kids, I realized I probably do perhaps 1% of the activities in a day that these people do.  And the scary thing is I'm not exaggerating.  Don't get me wrong, I'm by no means saying their lives are easy.  It seems from the outside looking in (and from listening) that they are almost like chickens with their heads cut off, racing around after kids, working, doing all sorts.

But at the same time, my life seems so empty in comparison.  I have no children to chase, no job to go to, almost no errands/tasks.  I live such an muted life. And the worst part, is my lack of choice in it all.  I can't do much because my body's ill, not because I don't want to.  I can't overcome this illness by wishful thinking, ignoring it, pushing through (I've tried all three).  I wanted to spend the weekend at the reunion, but I could barely manage an hour or so (and spent the whole next day in bed, wishing it was my last).

And why are these blog posts always so sad? Believe it or not, I'm not always sad/depressed.  But I use this blog as an outlet to vent my feelings of sadness and frustration, usually when I am at my sickest.

Busy Busy August.

Just a short post to update you on my Aug. which has been crazy busy.  Can you believe I still have moderate M.E.? Really you say?  You mean after more than 12 years you haven't suddenly overcome this illness through magic, herbal cleanses, or positive thinking? You mean you still have M.E. everyday?  That can't be right?

Well my friends, it's true.  And despite M.E. I chose to travel this summer to both try to do some research, and to visit my parents.

So first, while I did great on my interviews for my research, my observations were a complete bust:

Travelled too far, program was cancelled, friend's van broke down (which was supposed to allow me to travel with feet up at the least).  Her friends rescued us which meant I had to sit up for a 4 hours drive.  That next day I came down with a serious intestinal infection that had me living in the bathroom.  After 48 hours where I almost had to go to the hospital for dehydration (AGAIN??!!!) I recovered and then traveled again (2 hour car ride) to my parents.  While i did OK here the first few days, I now have either an M.E. crash and/or infection: significant fever, fatigue, very painful breathing, swollen glands, M.E. weakness, and lymphs etc etc.  AND I have to travel again tomorrow (thank goodness to home).

I can't wait to see my puppy, it's the longest I've ever been without her.  Hoping the fever isn't too bad for travel tomorrow as it makes me weaker.

Gardening, a dangerous activity?

In the spring and summer, one of the activities I can still manage to take part in is gardening.  I say "manage", but even so, I have to be careful.  One of the worst triggers for me fainting from OI is (interestingly) squatting then standing.  I once had a 1/2 faint in a book store for example, from squatting to look at the books at the lower shelf.  My most recent faint was pulling a few weeds in the garden.

Anyways, about a week ago, my friend/roommate and I drove to the local gardening centre and I bought some perennials that were on sale for my front gardens.  It's a native plants garden that is migrating into becoming a perennial garden.  I have one garden (the left) that I am trying to maintain as a mostly native plants garden….native to Ontario and Manitoba at least (rather than Europe).

The theory is, native plants are good for the birds and pollinators, as well as being easy as they are conditioned to flourish in the local environmental conditions.  But as they haven't flourished in the right garden, I've decided to throw in some other perennials as well.

The left native plants garden

Later in the day, after the outing, I was so excited to get my new plants planted that I did the classic 'over-do'.  I cleaned out a small section of garden (while sitting), then made a few holes for the new plants (which involved some standing).  Anyways, my legs started to get very weak and shaky, but I decided to ignore it because I hadn't been outside long, and I was frustrated by my lack of strength doing what seemed like a simple task.

Next thing I knew, my leg muscles quite literally gave out, collapsed, and I found myself sitting on the driveway without the strength to stand up???? I was so weak, that every time I attempted to get up my legs just didn't have the strength (would give out).  I sat there for a while then managed to get into the house and my bed.  I realised it was a combo of weakness along with some OI (one of the symptoms of OI can be shakiness/weakness) and perhaps I had not had enough water as it was a hot day.

When I tried to get up and go to the kitchen to get some water, I was still too weak to make it.  Embarrassingly, I had to call my friend/roommate who was at work, and she came home and got some food and water to my bedside.  She also watered my newly planted perennials which I didn't want to loose after they cost me so much to plant (physically, not financially).  After 2 hours rest, I had the strength to get to the couch to watch TV, use the bathroom...48 hrs later, I was back to my 'normal' strength and could walk the equivalent of a 1/4 block.

Lesson learned: when my muscles shake from weakness, they really are weak and I should stop what I'm doing.

Left garden, prairie sunflowers and pearly everlasting

What a strange illness this is.  Some days I can be quite disabled physically, while other days I can maintain a low level of function.  As I sat in bed that day, unable to walk, it scared me to think how quickly I'd become unable to function, even for a short couple hours. What if this were the norm? In that state, I could no longer live relatively self sufficiently.   How would I get food (and I don't mean shopping which most days I can't manage, I mean walking to the fridge or kitchen to actually get some food!) How would I get to the bathroom?  I wouldn't be able to let the dog out!!! What would happen to my closest companion?

Really, I just need to be a little more careful and listen to those signals from my body.

My front gardens are about to come into their peak summer/fall bloom.  I have flowers that bloom in the spring (lupines, flox, Canada anemones, pinks), then there are a bunch of flowers that bloom in the mid summer lasting well into the fall.  I think it will be a year or two more before I get the right garden looking good, but the left one I'm fairly happy with (because I like a wild, untamed look).  I will try to remember to post photos when it is in full bloom.

Right garden with new perennials in foreground

My busiest month of the year is now upon me and I am forcing myself to rest and conserve as much energy as possible in preparation. (Does that really work?  Well at least I won't start crashed/relapsed).

There is travel coming up, as well as a conference here in town where I am presenting (it's short) but really hoping to manage to take in a few sessions as well. I have been looking forward to this for over 9 months.  As I'm mostly too ill to travel, I don't get to attend conferences very often.  The last two I was scheduled to attend, I had to cancel due to health issues.