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.

POTS testing - It's awful

I'm not sure how many times I've heard tilt table tests are really difficult, especially for those with M.E. I've had Postural Orthostatic Tachycardia or at least some form of OI since the day I got ill because since contracting Mono,  I've had dizziness, pre-syncope, and occasional faints.  The cardiologist I saw here was familiar with OI but not POTS.  I told him I suspected it was POTS but he just kept saying OI. I figured at the time it didn't matter because he was willing to try me on some of the drugs that help, and since POTS is a form of OI the drugs are pretty much the same.

Long story short, I tried three drugs, had awful reactions to all of them for different reasons, and basically gave up.  My cardiologist retired and there you have it.  When my regular NP was worried about my black-outs and vision loss and wanted to refer me to another cardiologist I said "only if it's someone who knows about POTS".

She sent off a referral to the only specialist in the province and we heard nothing for 8 months.  Then a few weeks ago, a fax came with an appointment time for testing and only TWO weeks notice (it's a 17 hour drive from here and involves getting a travel grant, booking flights, finding someone to accompany me etc. etc.).

Well I went (part of me is still wondering why given how crashed/relapsed I am at the moment).

If you have M.E. tilt tests are horrible (I'm sure they are no fun for people with any form of OI) but with M.E. crashes are like the worst day of influenza.  I haven't heard of anyone with M.E. NOT crashing from a tilt test.

So the two nurse technicians were very nice.  I fasted and didn't drink anything from 12 midnight until after my test (which after 3:30pm).

I figured (arrogantly) that it would be bad, but I would tough it out fine.  They hooked me up to two types of BP cuffs, heart monitors, and they inserted a port/needle to take blood samples. First they monitored me laying down, then they put straps across my chest and legs and tilted the table upright.

After 10 min upright I was in agony (not pain).  I lost most my vision after a few minutes (it was blurry like little spots/partial vision).  It stayed that way the rest of the test.  I felt light-headed and HOT.  Well my sweating problem (I've now discovered) is actually a POTS thing.  I was flushed, red, hot and sweat enough that by the end of the test, the table was wet, my gown was wet and my pants were wet.

And, I felt horrible.  Shaky. So horrible, anxious, like "I really really really need to lay down".  I think??? because they were hoping to see me faint they kept me up for a full half hour even though they probably had a diagnosis at 10 min.  It was everything I could do not to scream or cry.

When they finally let me down I did cry because the thought of even sitting up in a car for an hour to get back to my friend's house was just too overwhelming.  I wanted to stay horizontal for the rest of my life. After some IV fluids and some time laying down I did feel a little better.  That said, once I left the lab, I had to sit down a few more times before we made it to the car.

Because they were doing blood tests during and after I won't get any results for two months (I guess some of the tests take a while).  However, she did tell me I was in tachycardia the whole time upright and I heard her tell the specialist "positive for POTS" and (I think?) that I was over 150 BM for more than 10 minutes of the test.  It looked from my brief glance (she showed me a little of the data) that I was over 120 the whole time?  I'm actually not sure why I didn't faint, though??

Who knows if it it will be worth it that I went.  Will they have ideas for a drug I haven't tried? Will they just recommend exercise which makes M.E. and for me, POTS worse? Will I be crashed for the next month from this trip? I'm not sure why I even bothered.

On the other hand:

1. It will finally be on my medical records
2. I now know that my black-outs and vision problems are clearly POTS related
3. I also now know that my sweating problems are POTS....this was news to me.  While I have these bouts of sweating I also have major temperature control issues with the M.E. (I get very cold very easily).

Four Days Down

I've been crashed for four days...not long you say? It feels like forever. Perhaps because the last 15 years of my life have been a series of crash days piled upon crash days piled upon relapses.  It's hard to remember the "not" crashed days when you are living the crash days, although I am thankful that I have the "crappy" days where I'm at least not too sick to live a little.

I'm not sure why I'm crashed? It could be PEM, but I can't put my finger on an over-do.  I did finish my marking last week so maybe my body was "holding out" until I was done the winter course.

Sometimes I have an M.E. crash - weakness with viral symptoms - if there's an infection going around.  I don't "catch" the infection, I just get the M.E. flare/crash.  Anyways, I can barely lift my arms or stand right now and I'm out of breath walking around the house.  It hurts to take a deep breath or talk, especially in the afternoons.  I've been avoiding people, I just don't have the energy.  I'm like a gas tank with literally nothing but fumes.

Despite this, I just forced myself outside with the dog for some air.  I've probably "sat up" for a total of one or two hours the last 4 days - pathetic! I live in bed or splayed on the couch.

My spring course starts next Monday, so no 'mental' rest for the weary.

I woke up to around 4 cm of snow on the ground this morning.  It's supposed to be cold with flurries and/or rain most the week. At least if I remain crashed the sun/spring weather won't mock me as I lay here.

Can you believe my pal Teagan turned nine this week! How time with our canine companions flies.

Me and Teags last fall 

I'm Moody

I'm a moody person.  Not only that, but I can go from feeling fairly happy and content, to frustrated/angry, to lonely and depressed all in the matter of hours.  Yes, being ill all the time does affect my mood, but they are not the same. My moody personality/disposition pre-dates me getting sick. Not that being sick all the time isn't depressing, it is, but this doesn't mean I am never happy, or that if I'm sad it necessarily has anything to do with being sick.

In fact, I get super frustrated with people equating my mood with the illness/M.E. and vice versa.  The worst is my dad who when I tell him I'm feeling really ill or sick he replies "cheer up" or "how can I cheer you up?".  If I said I had a cold virus or cancer would the response be "cheer up".  He's not the only one, others have, when I tell them I'm not feeling well, immediately jump to a comment about my mood.

I wish friends, family and acquaintances could spend just one day in this sick, disabled body.  I'm positive I would never hear a comment like this again.  It is so much more similar to the worst day of a terrible virus after having run a marathon and so unrelated to mood, it would only take a day in my body to "get this".

Imagine trying to do a simple thing like brushing your hair or teeth and feeling your arm muscles give out, like completely give out!  Or standing up (and still) for more than a minute (literally 60 sec.) and feeling your legs start to burn, your periferal vision starting to go...if you try to push through a vibration/buzzing starts in your legs which then get very shaky; push further and you black out completely.

Or you go for a short outing and 24 hours feel like you've been hit by a bus.  Your throat hurts, you have a low grade fever, you feel the lymph nodes in your arms pumping and aching, every muscle in your body aches and it hurts to take a deep breath, like you have a deep seated chest infection. Sick, physically ill, not moody.

Anyways, I haven't written a post for a while so here it goes: My life is okay, I haven't died from working online at home.  In fact, at the moment I'm no sicker than I was in the fall when I wasn't working.  I relapsed in the winter but maybe that wasn't fully work-related, although I'd be surprised if it didn't contribute.  While the work probably effects my health (negatively) to a degree, and it definitely effects the rest of my life (I have little energy left to pursue anything hobby wise or recreation), it also comes with a feeling of self-worth and extra money $$$.

People who aren't able to work due to illness face a lot of prejudice. The narrative  in  our western society is that your worth as a human is in part connected you your ability to work, or be productive in some way.  This underlying message has negative consequences for those who can't work due to illness or disability or age.

What is our value if we can't work?  Having been unable to hold down even a part-time job out of the home for most of the last 14 years has meant I have had to learn to assess my worth outside what I "do".  Not just work, but hobbies and activities that once helped define me, that contributed to my identity were swept out from under me.  I still struggle with my value as a human outside of productivity.

One rare gift of this illness is I am able to see value in a human life even if someone lives "off the system" and can't work or even pursue hobbies. My specialist used to say "we are human beings, not human doings".  God I miss her sometimes.

As for this rare gift/insight of "M.E.", while I still struggle with it, at times I have clarity about human value and how unrelated it is to "human doing".  I think being sick and unemployed, on disability,  has allowed me to see people for who they are in a way that others who haven't had to live without "doing" would find hard.

Another "gift" of the illness is my understanding of "giving".  I had a counsellor early on in the illness who told me  that maybe I needed to learn how to be a "gracious receiver".  Since then, when I feel that terrible knot in my gut about being on disability or having friends or family help me financially or physically I try to think about the two-part relationship involved in giving and receiving.  For some of us, I think it is far more difficult to receive than to give. I try to graciously receive from my friends and family although I still find it hard since the balance is so "off".

When someone gives me something or is generous, and I am unwilling to receive graciously, they don't get that good warm feeling of giving.

It's funny but I have friends who are happy for me to talk about my insights about being a gracious receiver, but can't manage to give the gift back themselves, by which I mean - receive graciously in return. I think I have a very generous type of friend because I can think of 5 good friends off the bat who are extremely generous in their giving but don't seem to like to "receive" (at least from me).

If you are a relatively healthy person with a sick and/or disabled friend, imagine how hard it would be to be so trapped by disability and finances that you were rarely able to "give" things to your friends and family members? I think I can speak for most of us sickies when I say you do us a great service, make us feel helpful and happy, when you allow us to give you the occasional gift without refusal or thought of return (now I need to pay them back somehow).  Whether this is letting us hear about your problems/struggles on occasion, leaning on us in some way, letting us buy a meal/treat once in a while, risking asking us a favour, or being a gracious receiver when we send you a card or photo or gift.  Think about how good it must feel for us to "do something" on occasion.

On a completely other topic, there are still big sheets of disintegrating ice in the bay, here's a few photos:

There's ice in here but I'm still going in.

Teagan doesn't "get" selfies