Procrastination Station

I'm procrastinating. Do I have an excuse to procrastinate?

For those of you with M.E. or another severe chronic illness, you know what it's like to deal with fatigue and illness symptoms daily.  Nonetheless, we only get one shot at life, so we must make choices about giving into our body's requests (for rest) versus doing the "living life" stuff that we can manage (I realize for many with M.E. this involves very little).

Compared to the healthy world, however, I do think we have a good excuse to just do nothing sometimes.  The healthy world isn't dealing with constant illness while doing stuff (even if that stuff is as simple as getting dressed, fixing some food, taking a bath or shower, talking). Today I'm giving myself permission to put off all the "to dos" and be exhausted and sick and just rest.

I had imagined my summer being much more relaxed/restful.  Instead I am busy (M.E. busy).  First, I did that crazy intense online course in May and June which lingered into early July stress-wise.  July just flew by with errands and dad-care/assistance and???.  We've also been doing some repairs on the house which got complicated when a friend couldn't come up to help as expected.  Then a different good friend and her son visited last week which was amazing (and she helped with the house project), but unfortunately their visit co-insided with some pretty awful sick days. I also pushed pretty hard just to visit when feeling crappy and horrible.

It's already August and there are at least 4 dad appointments coming up, the yearly agility event in the city, and a trip for me.

For 6 months my friend/housemate, her brother and I have been planning a trip to some nearby Islands to camp.  Exhausted and immunocompromised or not, I plan to go.  I need to unplug.  I need these four days to lay on the rocks and watch the waves, not have to deal with care or questions from my beloved octogenarian, to see a sky full of stars, and perhaps even see some wild caribou!! (the most southern woodland caribou population resides there).

You can expect some photos when I get back. Thankfully it's not that far away, my friend will drive and I will have help for stuff that I need.

Then, to top it off, I also agreed to teach another course this fall (yes I am insane and stupid).  On the plus, it's the 12 week kind (slower pace with more flexibility) and my supervisor from the PhD is allowing me to pretty much just teach her version of the course. This saves massive amounts of planning.  I'm actually quite looking forward to it.

Who knew 10 years ago that I would actually: fist, be just as sick; and second, find a way to become a Dr. (PhD) and even work part-time from bed?  I hope I'm not pushing things to the degree that I will be one of those who relapses into severe M.E? I am counting my blessings.

Today, I am just in bed (to be honest, I still spend the majority of most days in bed - 18- 20 hrs a day).  I can't seem to get motivated to do anything....I mean anything. I'm so exhausted. I should be piddling away at some reading or course planning. Instead I'm going to do pretty much nothing.

Crashy crashed

I have a friend and her son visiting and I'm crashed - crashy crash crashed.  I know sometimes I can go along doing not a whole lot and think "M.E. isn't so terrible" and then when I'm like this I WANT TO DIE, I want it to end I'm so sick.  I can barely sit up today, I'm yawning constantly and so without any energy, so devoid of energy there are no words.

It hurts to breathe, sore throat, icky fluey malaise feeling and did I say colossal lack of energy? Like I can barely hold my arms up, I can't really stand at all for more than seconds.

I was at my clinic Monday trying to figure out some paper work and we did some bloodwork and my white count is down to 2.9 with mild neutropenia again.  Nothing extreme, but this is the lowest it's been in a long while. I did agree to go to a local internist who does some haematology but I doubt she'll make anything of it because, well it's due to the M.E.

I have a "holiday" camping coming next week and I may be teaching an online course again in the fall (the longer 12 week kind).  Did I mention that I'm exhausted lol?

Just for fun, here's my pup jumping off a dock/pier last week.

Nothing's New

I haven''t written lately because I don't have much to say. Has this blog reached it's inevitable end? Is there a reason to keep posting?

I am not working, my contract is over, and the stress related to that is gone.  It is so great to have a break!

Mostly my life lately revolves around entertaining and helping my dad. He isn't supposed to be driving at present so he is here everyday.  He seems depressed and bored so I do my best, but I have a chronic illness and could use a break from him sometimes.  It just never ends; I have an inkling of what it means to have kids (no, I realize it's not the exact same), but being someone's main caregiver etc. is a constant job, it is never over...

Otherwise, I'm doing.....well nothing. Watching movies, Netflix, a little gardening.  I am trying to set up some help with fixing a section of leaky house foundation, but in the role of facilitator.  And on the positive, the project means I have a friend coming to visit from the states which is AWESOME and exciting.

Health-wise I'm up and down.  I do too much helping my dad, then crash, wish it were all over I'm so sick.  Then as soon as I feel a bit better, I do it all over again. Sigh.

With the summer heat the POTS is horrific.  I did some light gardening the other day (sitting on the ground weeding). I was dizzy for most of the session, came indoors and took my BP and HR and I was HR- 146!! sitting down gardening.

Speaking of POTS it's been 2 months since my tilt test and the specialist hasn't sent any results at all.  Attempting to get medical support for these conditions/diseases is a complete waste of time in my experience.

Stress

Well I'm done teaching my online course, so I am out of work for the foreseeable future.  Although am I really done? NO! I am still dealing with student issues.  Teaching (even graduate students) is not easy, and I tend to absorb stress quite easily.  Of course I can't share details, but suffice it to say - dealing with failing students - it's anxiety making.

On top of it all, my dad had a memory assessment and the Dr. wanted him to stop driving until he goes for a driving assessment.  This not only ups my daily load hugely, but my Dad is beside himself and he dumps his anxiety onto me, or tries to (e.g. talks about suicide).  He is also here (or calling) me much of the afternoon every single day. I'm actually letting him drive just a little because despite the fact I'm pretty sure he'll fail the assessment, it makes him happy and takes the stress level down a notch. I pray he doesn't hit anyone.

It would help him with the inevitable transition if he agreed to get involved in ANYTHING (he's been here a year and some) but we've had that argument so many times I'm blue in the face.  Besides the exercise class at his home, he refuses to join or participate in anything (a class, volunteer, an activity, a church, etc, etc.). Guess what he does when he's bored? Either drives around, or thinks up an excuse to go buy something (small things, but still), this is not a life.

So needless to say, sometimes I feel I can't catch a frigg'n break. Oh, and the dryer is going, the TV's not working properly and I am supposed to be setting up house foundation repair for July which I can't afford and don't have the help for (I have one friend who's offered a weekend). And given I often don't have the strength to lift my arms (literally), I'm not sure how the project will get done.

My one beacon is that I'm supposed to camp on some nearby islands on Lake Superior for 4 days this August. I am so excited/looking forward to it there are no words.

I know some people are better able to look at the bright side of life than me. I do realize that everything in my life isn't sh*&T, on the other hand, sometimes I feel like I got dealt a bad hand, and worse still, no matter how hard I try, the rain keeps falling.  There's so much I can't change, so much out of my control (e.g. my family situation, my health and consequent poverty/low income), that at times I just feel beaten down.

Life Sucks.

If it's not one burden or bombshell it's another. What's the point?

Living and Paying

I have been so busy working that I've not had time to come on here and complain (hehe).  Today, however, I'm having one of the the worst crash days in recent memory - just so so so sick. I need this outlet to share with those of you who I know will understand.

I've been teaching an online six week intensive Masters course since the beginning of May and intensive is the correct word. Even for a healthy person these courses are challenging to teach.  I won't go into all the details, but at one point I counted 23 days straight where I hadn't had a single day off from the course. That said, some days I worked only 2 hours, but somedays I worked 4 or 5 hours!!! multiple days in a row which for someone with moderate M.E. is crazy.

The only reason I can do it is because I can work from bed, and I don't suffer terrible cognitive dysfunction/brain fog like most...especially in the mornings when I work.

Then last weekend I went away to visit friends. I had rides both ways (3hrs) and spent the weekend WAY overdoing it.  I really really needed it. Between working for 5 months and the extra strain of dad-care and support, the stress had been building to a very high level. I was about to break.

I've been crashed all week since my trip not surprisingly, but today is way worse, I'm so sick there are no words...

So please send healing recovery vibes my way. My course is over and by next Friday all my marking will be done.  I have no work lined up in the foreseeable future so it's back to disabled/unemployed which might be the best thing for a while.