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.

Super Moon

I love the moon.  It shows up often in my block prints - you've probably noticed.

When it was full on the 12th of July, it was a beautiful night here.  I drove down the road to a near-by park overlook at sat with the dog, hoping to see it rise over the lake.  When it did, I took some photos with my cheap little nikon coolpix camera.  I put it on a night setting and then used the timer as the shutter stayed open too long to hold it still.  It was  a magical night.  I sat there for maybe 45 min just taking it all in.

The photos in NO WAY do the moon that night justice.  It looked so huge.

What have I been doing lately? Suffering crappy sick days and doing interviews.  I am now out of educators to interview.  I've called and emailed every wolf education center I could drum up online and through asking participants if they knew of places.  There are three or four more possible participants that may come through.  I'm on the border of having enough to actually do this study, it's close. But to be honest, the PhD is a month by month thing anyways.

I am out of medical leave and I have one year of funding yet (if it's approved by my disability program).  It would be funny to be a semester away from finishing and have to bail, on the other hand, at some level, we all live day to day.  The best philosophy I've found is just to live each day and not spend too much time worrying about the future….because it never comes.

And for me, it causes anxiety that I don't need. Sometimes (well a good portion of the time) it's everything I can manage just to get through each day.  Most times I can't wait for evening both because the weakness, dizziness and flu symptoms (except throat) ease up, and because I can go to sleep and not feel ill.  To be honest, I've thought of throwing in the towel from time to time due to sickness and loneliness, but that alone would take too much effort.

But then there are moments like watching the moon rise that I try to savour.

What other things do I love or find inspiring?

Here are 10 things I love:

1. Reading a good book, the kind I wish would never end, escaping into some other world.
2. Snuggling with my dog
3. Hanging out with friend/s (if I'm not too ill and it's low key)
4. Swimming in a fresh water lake (hope to do it this summer)
5. Watching the moon rise
6. Being out in nature (rare lately)
7. Growing veggies and flowers
8. A glass of nice red wine
9. Lake Superior
10. Lots of foods: chocolate, avocado, cherries, strawberries, decent fresh corn on the cob etc.

Feeling Rough and Remembering my Sister.

You know, I've  picked up just a little in July.  Still, overall, I'm feeling sick and rough.  I saw my NP this past week and of course had to suffer a day or two crash just from the outing.  Ironic, if you ask me.  I have a medical appointment and am sicker because of it.

We did do blood work because I wanted to see if I'm anemic.  Not only am I sick and tired, but more out of breath and more lightheaded than usual.  I'm not anemic.  In fact, it turns out that the floridix and vitamin C have brought my ferritin levels into the normal range for only the 2nd time since I've been ill!!!

Lots of people don't seem to understand that low ferritin or iron deficiency does not equal anemia.  Anemia means that either your hemoglobin or red blood count is low.  The most common cause (but only one of many) is iron deficiency.  But you can be anemic for reasons besides iron deffiencny and you can have low iron or ferritin stores and not be anemic.  I have had bottomed-out iron or ferritin levels for over 10 years.  Still, I've only tested anemic once and that was last summer.

I'm pretty happy that my ferritin levels are a bit better (still on the low end of normal) but unfortunately it hasn't translated even slightly into more energy.  On the other hand, my NP did call to say my WBC (white blood count) is mildly low again at 3.8.  This is barely considered low, but it does seem to coincide with my sickest times.  Most Drs. wouldn't even bat an eye at this level, but for me, mildly low WBC and occasional neutropenia just seem to be part of the illness.

In other news, I also had my longest interview yet, which in the big scheme of things is good, on the other hand it was completely draining  due to my energy being so low.  I have now conducted 7 interviews by phone or skype for my PhD research and I have two more scheduled next week.  My hope was 12-15 interviews total, and I have 11 people committed, so that is progress.  Despite it being really hard work to do sick, I enjoy talking with people about their work as educators.  It's so nice to do something that takes me out of myself and my own little world.

A lot of the time I try NOT to think about my life with illness.  This is hard because there is little escape.  I have an hour or so in the morning where I don't feel too ill.  If I don't test myself during this time (e.g. keep my feet elevated and stay mostly resting) I can almost pretend or imagine I'm not sick.

Otherwise, it takes a lot of work to put my illness out of my mind because it is so potent and overwhelming.  I stand or sit up and am dizzy, it hurts to breath like there's an infection in my chest (how does one avoid breathing?), every night my throat is so sore, my armpits ache and throb (lymph nodes) and the fatigue and weakness and feeling of icky sicky are just impossible to ignore.

For most of us, at least eventually, life throws hardships and tragedy at us.  Some of us more than others.  I do not believe we choose a good part of our destiny.  Many things happen to us (like illness, loss, trauma) that we have no power over.  On the other hand, we can choose what to do despite all the horrible stuff.  There is a lot I can NOT do because I'm sick, but I can still choose what to spend time thinking about, how to spend my time while I'm laying down, how to treat my friends and family when I do talk with them, etc.

For some reason I've been thinking about my sister in this regard.  I am the 4th child in a family of 5. My oldest sister was born with Downs Syndrome and a weak heart. Then, when she was 2 she had a stroke.  She could walk and talk, but not well, she was partially paralyzed.  She always walked with a limp, couldn't run at all, or even walk very far, and one of her arms was not very functional.  Growing up with her (she lived with us part-time), I witnessed someone living with  a mountain of struggles and disabilities.  And yet, I think she may be one of that happiest, most joyful people I ever met.  Truly. She died at 19 during a hip operation.  Her heart failed.  I think I was 13 (8th grade) at the time.

For some reason lately, when I'm feeling sorry for myself, I think of her.  Not that I never saw her frustrated when she couldn't run or grasp something.  And it's not that I didn't see her sad when people were afraid or awkward around her because of the Downs Syndrome.  It's just that she spent so much of her time, despite all her challenges, happy.  I think about how I might be happier despite living with M.E.? How I might better find joy despite feeling horribly ill?  Ideas?

Wow, that was hard.

June was a really tough month.  While the weather has warmed up which means time sitting/resting out on the patio, I had little resilience and a lot of very sick days.

I've just been plain ill.  Same as any time I'm flared, really annoying viral/immune symptoms predominate  (e.g. my axillary lymph nodes have been sore and achy almost the whole month, my throat has been more sore than usual with more swelling and blisters) and the autonomic stuff has also been worse.  In fact, I managed almost a full faint last week (head rush/black-out enough that I fell, after bending over to pull a weed in the garden).

So I've been spending most my time in bed or on the couch.  I'm trying not to feel too down about it, but it's hard.  I just see how the years are going by while I spend them feeling sick, weak and beyond exhausted….not really living much of a life.  And because social (even telephone calls) are so draining, I'm usually alone and sometimes lonely.  This is hard especially because I used to be a pretty social person.  I was never a person who spent much time alone until I got sick.

Still, I have managed to plug away at small tasks the last couple months.  I hung my art show today.  I had a lot of help getting stuff ready, but it did mean a two hour outing so I am completely shattered again for who knows how long? Hopefully days not weeks.

I also managed to work 16 hrs on my PhD in the month of June.  Pretty pathetic, that's an average of 4 hours a week (less than what most working people do in a day).  On the other hand, it's more progress than nothing at all.  And like it or not, most the healthy people in my life seem to judge human worth based on human doing, not human being (hehe).  I felt the same way before I got ill.

Here's hoping July is a better month health-wise.  It wouldn't take much.