Vacation

When you don't really work do you deserve a vacation?

While reading a book on chronic illness one thing the author advised was to think about fulfilling different human 'needs' despite being ill.  For example, no matter how sick you are, to think about social, emotional, recreational and work needs.  

Work could be just resting and pacing, taking the drugs you need, stretching for rehab.  Social if you're bedbound could be writing a short note or email, a five min conversation on the phone.

etc. etc.

I think her point was that when you are sick all the time, it is still important to think about health in a variety of ways beyond the physical.

So anyways, my point is that I am justifying my upcoming camping by believing that even sick people, people like me who spend on average 21 or 22 hrs. a day laying down and less than 3hrs a week on average out of the house, can still take a vacation if there is a way to make it work.

I will definitely be pushing my limits some, but once the tent is set up I will spend most my time lying down and I'm taking food that is mostly snacks (minimal prep) so it should work out.

Here is what I'm looking forward to:

• seeing a sky full of stars again
• listening to the waves on the beach as I lay in my tent
• sitting on the shore with my feet in the cool waters of Lake Superior
• being 'unplugged'
• taking photos....I love taking photos and trying to capture moments that will later inspire art
• writing in my journal
• reading
• writing notes to friends
• listening to the patter of rain on the tent
• observing the many colours of Superior from mercury silver to grey to deep blue, to turquoise
• seeing and hearing birds
• seeing wildlife
• eating wild berries
• contemplating deeper questions (I seem to do this more out in nature)
• lying on a rock that has been heated by the sun
• lying in the sand and running it through my fingers
• watching the dog swim
• watching the sun set over the big lake
• being mesmerized by the crackling of a fire
• being open to the surprises of nature (I'm sure there will be some, last year one was watching a family of otters swim by, another was finding fresh caribou tracks in the sand)

Depression and Chronic Illness

As you could probably tell from my last post, I'm feeling depressed about my life.  I am feeling disappointment for all the things I've both lost and missed along the way due to having a disabling chronic illness.

I realize it's best to think about what I do have, what I can do.  I know things could be worse. Really, I do. Still, I also don't think it works/help to repress it all.  For me anyways, it's a process of mourning, coming to a good place, then mourning it all over again when something triggers the sadness and feelings of loss again.

I've had a little better week, but still pretty bad.  I'm dealing with some major intestinal illness again and getting medical help around here in this system is almost impossible.  I now have two referrals to gastroenterologists and have yet to receive an appointment slip.  In fact, it may take a year to even get in to see someone again.

I have done a lot of thinking over the last two weeks about my PhD and where that is headed.  I've decided to take the rest of the summer off unless I get super inspired.  Then, I am going to meet both my committee members in person before I start rewriting anything.  I think it will help to just have nice conversations in a comfortable environment and really get a sense for what changes they want/hope for.  Then, I am going to stick it out through the fall, if only for the grant money.  I feel some guilt around this, but before I jump back onto the poverty train, I want a fall to prepare.  And to appease my guilt, I will do some rewriting during the fall at my own pace/ability.

Now as for the rest of the summer, for one, I am taking me and the dog camping.  I think I have a ride worked out and it will be good to lie in a different space for a change.  Fingers crossed for me please that I manage this outing.  I am nervous, but realise I managed it last summer and more positive than negative came from the experience.  All I have to do once I get there is lay/nap/rest/read in a different space.

I do worry about the copious amounts of time I spend alone, and this will just be another week by myself feeling sick somewhere different.  But I think it will be 'healing' in a spiritual sense even if not in a physical one if that makes sense? And it will do me some good to be unplugged for a week if nothing else.

Here's a photo of the dog for fun.

Post Defence Life

I had a horrible sick week post-defence.  Funny, but it didn't hit for more than a couple days.  Then all week I was much sicker than usual.  Thankfully, though, I am now back to "normal" with my little ups and downs, good days and bad days but nothing extreme.

I have stomach ulcers again, I'm sure of it.  The exact same pain.  A month ago when I went to a walk-in for my UTI (bladder) infection, the Dr. also gave me PPI's for ulcers because I knew back then I had them. My one experience with PPIs wasn't great, so I've been putting off taking them trying to get rid of the ulcers with my Ranitidine but no luck.  So I am biting the bullet and trying the PPIs.

Otherwise my life has been very dull.  I spend most my time alone (but at least with the dog) and the majority of the day on the couch or to be honest, for the most part in bed.  I get up a few times a day and walk around the gardens, pulling a few weeds.  Some days I do the dishes, and I did sit up for a few hours over the last week to do some art, but that's pretty much it.

People who aren't sick can't imagine it.  They say "oh you've been doing quite a bit".  I have no idea what they are talking about??!!!  I'm sure if a 'well' person spent 3 days 'doing' what I do, they would start to loose their mind.

If, for example I counted the number of hours my roommate is 'upright' sitting or standing, it would be 12-14 minimum.  How can that compare at all to 1-3? And 3 is a really good day for me.

I feel like giving up on people altogether sometimes.  I can't keep up with their lives even a bit, and I have nothing to tell them/talk about because all I do is lay around all day.

I really don't find my life fulfilling at all.  I'm lonely, but when I'm social I crash.  I'm bored, but when I do stuff I crash.  I live the life of an 80 year old except worse.  My Dad's 82 and does WAY MORE than me.

I'm just really disappointed.  Is this it? Is this all there is for me? I have no partner, no kids, almost no friends...in fact there is no one locally besides my roommate who I would consider a friend.  I made some 'friends' while I was doing my Masters but they have all since moved.  I made a few small efforts this spring to connect with some people, but it's just so hard when I'm so rarely well enough to go out.

Sometimes I want to just push myself for a few weeks and try to 'keep up' in the real world. But I know what will happen.  I'll relapse and then I become an emotional puddle because I'm so so sick and exhausted.  But I just have so little to live for right now.

How do us sickies find any balance??? How do we create any kind of life when we are sick in bed most the time?  And maybe the real question is, one that everyone must contemplate, is how do we find joy and fulfillment with what we do have rather than thinking it is around the corner or will come "if only we could......." fill in the blank "be healthy, be social, get a better job, have more money, live somewhere else, meet someone, travel, go back to school, find a cure, etc."

On that note, I'm going to post a few pictures of 'getting out' from last summer because it was such an amazing experience lying out on wilderness rocks and beaches experiencing beautiful Lake Superior.
Also, a photo of a block print I printed up over the last week or so....one that was already carved.

Made it!

Good news, I made it through my busy week.  I was able to both enjoy my family visits (at times), and attend and defend my portfolio (like a comprehensive exam).  I am now officially a PhD candidate which just means as far as I can tell that you can add PhD Candidate to the tag on your email (heehee).

Now all that's left as far as my PhD is for me to edit my research proposal, conduct my research, and write most of my dissertation (ALOT!).  Yes, this is probably a fairly unrealistic task for someone who is as sick as I am, so my hopes aren't exactly sky high.  I'm fairly proud of getting this far, though.

The defence went well, after a short 17 1/2 min (I timed it) presentation, my supervisor/advisor, my two 2 committee members, and the examiner asked me two questions each.  At least they were allowed to ask me two questions each....I have a feeling they didn't all do so...it's a bit of a blur to be honest. I don't think I answered them all well; in fact, I remember going off on tangents more than once, but I was told afterwards that I was at least slightly articulate.

Next, the floor was open and the 'audience' made up of university community members were allowed to ask questions.  Three of the 5 people who attended did ask me something.  I was nervous at the beginning, but it was such a nice group of people and I wasn't dizzy (hallelujah) that I made it though feeling some degree of calmness.

After a closed door discussion, they brought me back into the room and told me I'd passed.

Then we had a planned meeting about my research proposal.  Here is where things went south healthwise.  It was way too ambitious of me to think I'd be coherent or have any energy left after the defence ordeal.  Both committee members had issues with my proposal and I was having trouble comprehending what they were saying.  And to boot, the one member who was part of the discussion through teleconference hadn't even read the whole proposal (frustrating).  (Also, the connection volume was poor and made it even harder to concentrate).  So we just ended that discussion quickly to be continued at a later date as I realized I was completely done.

I was tearing up on my way to the car from pure exhaustion (thankfully my good friend/roommate had come to support and drive me).  I was very weak for the rest of the day.  I also had considerable brain fog (trouble focusing, headache, and a brain that felt wrapped in seran wrap) for the rest of the day.

I still feel surreal about the whole week, both the family visit and the defence.  I'm so glad it is all over with.  My advisor and I both agreed that I wouldn't even think about anything to do with the PhD for a week at least.

After a week I will reassess what my next move will be.  I could decide to drop out or take another leave at this point because I have now conquered a huge milestone.  Or I might plug away until my funding runs out.  But I will make those decisions after I've rested fully for at least a week.

Pushing It

With my brother and family visiting I'm pushing it.  Meaning, I'm doing way more than usual and the 'consequences' kicked in today.  Yesterday they did their own thing and I had a rest day, but the day before I spent 4 hrs out of the house which is WAY more than I've done in a long while.  We had lunch at a restaurant then went to a local waterfall and beach.  The beach was a good choice because I could sit and lay down.  However, it's really impossible for me to just "check out" when I only see my niece and nephew (8yrs and 9yrs old) once and occasionally twice a year.  I chose to just push myself and play and visit with them.

Yesterday, my rest day, I didn't feel all that badly and so of course the voice in my head was saying "why do you hold back so much, see you can do things without payback....you're just being too timid".  Then today I woke up achy and fluey and exhausted with the  heavy/sick chest and a low grade fever (99.5).  But today's my day to spend time with them.  We are doing an afternoon movie and I feel like hell on wheels.  But I'm going to push through again just so I can have that time.

They are here 3 or 4 more days and I really really hope that I don't get worse and worse.

Can I just say that M.E. is an unfair, ridiculous and #$$#%&^^&!! illness to have!  And to boot, I don't look sick at all, so I'm sure from the outside it looks like someone who is over dramatic and/or over reacting.  Sigh.