I've had enough!!!

Right now, life is really tough and I'm feeling that I've had enough.

Daily, when I try doing things, I'm faced with my weakness, the many barriers to living, courtesy of this illness.

Examples:

• I try to pull the dead tomato plants out of the planters and don't even have the strength.  So I look at those dead plants every day and it's like they're giving me the finger, that I can't even manage to clean them out (and either must ask to my roommate to do them - feels like grovelling - or sit and look at them indefinitely as they mock me).
• I try to go through some boxes full of old papers, and get shaky just lifting piles of paper!
• I do laundry and carrying the laundry up the stairs has me winded and laying in bed for an hour afterwards.
• Similarly, I change the cover on my duvet and have to stop for breaks from the weakness in my arms, and being winded.
• I manage to move our light aluminum ladder in the yard but my muscles shake and twitch for hours afterwards.
• I run a quick errand to the drug store and get the spins, lightheadedness standing in line. I feel so sick from the ordeal that I sit in the car afterwards in tears.

How do I feel? Angry, frustrated, a failure, useless, helpless, emasculated!!!

I HATE not being able to do things.  And being someone who is fiercely independent, makes it even harder.

This past week I decided to drive myself to a park which is an hour away.  I haven't driven that long since 2010.  I put my tent and sleeping bags in the car so that if I made it to the park, I had a day/night to rest there until I had to drive back.

I've been feeling so trapped and angry and alone lately, that I just wanted to escape, to be able to do something for myself. Daily, there are things I want/need, but just have to let them go, because I'm unable to do them myself.  Or similarly, I try to do them and either manage and pay, or worse, can't manage and end up feeling more useless and indescribably frustrated at how hard seemingly simple tasks are.

To boot, I'm lonely.  I have almost no friends or acquaintances in this town.  I can't remember the last time someone here actually asked me if I'd like to do something with them/spend time together? (early July?).

And have I made any friends in the last five years? No. How do I meet people when I don't work, when every time I attempt something out in the community, the real world, I fail due to my limitations.  (e.g., if I'm at a restaurant I'm lightheaded and so focused on how ill I feel, I'm not very social).  I guess I'm saying I don't blame people for not wanting a friendship (or hell, I'd take a shallow acquaintanceship) when I'm miserable to be around, and rarely make the effort the other way.

But I'm feeling done.  I'm just tired of this life.  I'm beyond frustrated with my inability to do better, and to cope with my limitations.  I'm not managing and I feel alone and useless and incredibly unloved and unlikeable.

After returning from the park, I spent the whole day in bed, weak, achy.  I felt (quite literally) like someone had clubbed me in my sleep.  I had a horrible sore throat and a fever.

You know, the worst of it was the drive, something about driving is super draining.  I did OK sitting out in the park on the most glorious day of the autumn!!!  And since there were critters running around our campsite (mostly skunks and foxes), my dog was up most the night growling and on edge (and keeping me up).

So after maybe 4 hours of sleep, I woke up just before dawn.  The sunrise was amazing and our campsite was on the water, so I took photos and enjoyed the sunrise.  Similarly, the many times I was up in the night enabled me to so see some Aurora (they weren't that great) and the splendour of a sky full of stars.  Since I live in the city, it has been two years since I've really seen a good dark star filled sky.

As well, spending the day just laying around, enjoying the peak of fall colours was a real gift.

But the drive home was awful, and I realized why I haven't attempted a drive this long since 2010.  On the other hand, I wonder how I'll mentally cope much longer knowing I can't drive very far and 'escape'.  It makes me feel even more alone and incapable of having any power over my life.

I just see no use in me being alive.  I live off the government (disability), I make no positive difference (that I can see) to anyone's life.  Obviously I'm depressed.  And while a day in the splendor of fall was a great tonic (I wasn't depressed the whole day), now I'm both sicker and more depressed realizing I have to live through (how long?) of sick hell pay-back alone, with no one who understands, no one to talk to which might 'take the edge off'.

I'm posting some of my photos from my amazing day :)
Do you have a favourite?

Note: The feature you see in some of the sunrise/sunset shots is something known as the 'Sleeping Giant" here.  If you use your imagination you can see someone laying on their back (head, adam's apple, chest and feet).

Long Shadows: Woman and her monster?

I loved the evening light on the rocks

sunset from my campsite

dawn

early morning swamp (drive home)

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.