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.

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).