June Updates

I'll try to make this short.

Life continues to be pretty challenging. My health is not good. I am exhausted, weak, viral and very dizzy. I almost got in a car accident 2X!!! yesterday I was so dizzy driving around (my dad, errands).

Then again today he had a dr. appointment as well as banking that had to be done (tax payment was late).

Last week, I did a round of labs for my new specialist. After 5! yes 5 intravenous iron infusions my ferritin is up, however, my red blood count RBC is mildly low!!! therefore I'm mildly anemic!  How can this be after all those weeks and effort going to the hospital for treatments?

My WBC was down to 3 (4.5-11 is normal) with mild neutropenia (again). No doubt as per usual there's nothing to be done. It sucks to be suffering like this daily with no recourse. And I'm just utterly exhausted doing daily tasks and taking care of my dad and puppy. My dad's having issues I won't share here but the burden of managing his care is overwhelming me at present, I'm at the end of my rope.

On the positive, one of my best friends visited last week and come hell nor high water I was determined that we would retreat to the woods by canoe for a couple days as planned. And we did!!! It was two nights but importantly one full day out on a beautiful wild northern lake where I was able to unwind, listen to the wind and the loons and the birds (instead of traffic, construction and lawnmowers) and forget all the responsibilities of daily life.

We took Teags along and I found a dog sitter for puppy.  I'll post a few photos.  Since the trip I've been even sicker. However, I still have two weeks until my next online course starts and it's mostly ready to go, so I'm determined to enjoy these weeks and rest as much as I can.

Sick Day

I've had some decent days lately where I've had the thought "my M.E. isn't too bad anymore".

I've been going for short walks, taking the dogs swimming, and taking my dad on short outings. (I've also been on vacation and avoiding working on my next online course.)

Some days, though, I feel just horrible. This is one of those days. I can point to at least three things I've done in the last couple days that might have caused this crash.

It's clear to me I will never learn. I will over-do and over-do til the end. If you don't have M.E., one thing that's really tough for some of us with either mild or moderate severity is that sometimes when we're doing an activity (shopping, taking on the phone, cooking etc.), we don't feel too badly, so it's hard not to keep going.  In other words, to avoid crashes I can't always listen to my body in the moment (e.g. this activity is making me feel awful) because crashes are very often delayed.

For instance, the friend I walked with two days ago probably thinks I'm fine because she doesn't see that it's 36 hours later where I'm curled into a ball on the sofa crying due to the flu symptoms, ache, weakness and utter fatigue.

On the other hand, I certainly know at this point around where that threshold is. So ideally, I should be more careful to avoid the over-do, given how horrible crashing is.

I crashed yesterday but still did too much. Today I can barely walk, my legs are so weak and shaky. My body aches, my joints included. I feel viral and icky. To be quite honest, I wish my life were done. I know this feeling won't last once I bounce back, but right now I don't want to even take another breath (which makes the ache worse). Being in this sick, weak, viral body for almost 17 years is just too much, I don't want to do it another minute.

So I'm here to vent. This is when some better emotional coping tools would help. I have a few, but am often left feeling alone, desperate, and depressed when I'm crashed or relapsed. One technique I use is to remind myself that the worst of this doesn't last - I always bounce back. And while not necessarily a coping tool, I also try to use something like reading or a movie to distract myself. These are also the days where I regret puppy. She needs exercise and I just can't.

Speaking of puppy, a few weeks ago she learned to swim. So here is a video of one of her first ever swims.

M.E. Awareness Day

Yes, it's come around one more time - May 12th, M.E. awareness day. This June will mark my 17th year ill - not sure if I should celebrate (I'm still here) or cry and scream?!

To all my fellow sufferers out there, kudos to you for enduring this horrible often invisible and dismissed illness.  We are all clearly made of steal - by necessity.

Appropriately, I'm in a crash today. Hot and cold, dizzy, sore throat and lymph nodes and chest/breathing ache. Oh right - muscle weakness and fatigue. Also that indefinable icky achey fluey malaise.  I wish there was some type of alarm that went off when I was over-doing to remind me not to.  It seems that even if I was crashed only a day or two ago, as soon as I'm feeling a bit better/stronger, I  completely overdo.

The last couple weeks have been tough.  I came down with influenza!! of all things at the end of April, beginning of May.  At first I just thought it was a terrible cold and I was being whiney, but then the fever hit. I'm doing better now (just a little coughing).  Then on top of it all my dad has not been doing well, along with heart/breathing issues his memory problems and confusion have increased a lot. I'm over there multiple times a day dealing with something. I won't bore you with details.

Anyways, thanks for all who read my laments.  Everything is not bad all the time. I have some nice things in my life, and puppy has gotten a lot easier lately.  We have a new routine in the morning where I get to lay in bed much longer which has made a big difference.

Here is a good article in CNN! about Ron Davis and M.E. research: http://www.cnn.com/2019/05/12/health/stanford-geneticist-chronic-fatigue-syndrome-trnd/index.html?fbclid=IwAR2iG1tO1tACS_i5y0z0kDeTl6_OGTWb8PhfWRi-aste90--wII9lXArzE0

Life is Challenging

First, I want to say I don't think the 'comments' are working which is quite frustrating. I can't reply to comments you post even as anonymous. I've monkeyed with the settings and everything seems to be fine so I am not sure how to fix this issue. If you don't mind, try leaving a comment and we'll see if it will post. I might switch my blog to another venue if this keeps up.

My dad's health situation has gotten a whole lot worse. He is in congestive heart failure. It's still almost two weeks until his appointment at the cardiac centre so last week we ended up back in emergency for an entire day just to get help with a medication change. It's so hard to watch him suffer like this. I'm over there more than I have been since he moved (thank goodness it's only a few blocks away).

My own health (surprise surprise) isn't great. Although to be fair I'm writing this while crashed having gone to my friend's/roommate's concert last night. I was having an energy moment and just thought - I'm doing it. Since finishing my contract last week I've barely done a single fun time-off type of thing between my dad's medical and mine.

I had another iron infusion last week (my 3rd of 6) and for some reason the IV caused me a lot of pain this time. I even had to have them end the session early. I didn't want to get a reputation as pain sensitive or a complainer but it was so painful! I managed to hold my tears back until I left the ward - burning pain all the way up my arm. My arm still hurts two days later (Dr. google has informed me it's peripheral phlebitis) but it's almost better thank goodness.

I am so sick of being sick. And I am not being careful. As soon as I get a good moment I go out and spend my spoons. I also push through ALL THE TIME to do things with my dad including helping him with daily care. What I'd really like is a vacation.

New Specialist

I have a new specialist, however, she is not an M.E. specialist. She is an internal medicine Dr. who specializes in haematology.

My white blood count, as those of you who follow this blog already know, tends to run low. Specifically, I get a low grade neutropenia fairly frequently. This is common in a number of autoimmune illnesses and with chronic viral infections. The new specialist also explained that this can happen after a severe viral infection (like hepatitis or mono).  I asked whether "even after 17 years" and she said yes.

She tested me for a bunch of the ones I've been tested for before (various anemias and autoimmune illnesses mostly). And while many doctors don't buy into the idea of a chronic Epstein Barr or mono infection she does think this is possibility in my case (that my body never fully fought it off). Either way, we both agreed that antivirals weren't a good option (partly because I've tried so many already with no real improvement and the side effects are pretty awful).

She is actually familiar with POTS!! which has never happened for me before outside the autonomic testing lab I went to Hamilton (and my M.E. specialist way back). Most doctors in this country (in my experience) seem pretty unfamiliar with it. Thankfully, she was not dismissive of the M.E. either.

She is testing me for a few more things (autoimmune, inflammation markers, and hepatitis) but given past experiences I don't see any of it coming back positive.

She also convinced me to try a treatment for my very low iron/ferritin stores.  I've had these for over a decade because I can't tolerate ANY version of oral iron without severe gastrointestinal distress, and I really mean severe. I am receiving iron infusions at the hospital once a week for the next 6 weeks.

I had my first one this week and while I didn't have too many side effects (thankfully) I am horribly horribly crashed. This, I think is from everything I've been doing as a result of my father's heart condition and fall, puppy, and to wrap up my course/teaching for the semester. I am feeling so ill today there are no words.

I think you need a photo of puppy.

Ripple with a raven feather

Back to Emerge.

Last spring my dad tripped and fell. We ended up at emergency however, thankfully, he did not break his hand.

This time he fell in his room (a fall rather than a trip) and scraped his face. There was some debate, but I decided to take him in just in case. It turns out he may have been dizzy due to A. Fib. When we got to the hospital his heart was all over the place. The emergency got busy throughout the day Sunday so it was hard to get anyone to tell us much at all. They just kept monitoring him.

For someone with a chronic illness and a father who couldn't manage alone (he freaked out when I left for 15 min), it was a trying couple days. They ended up moving him to a cardiac floor so I got home at midnight (then back the next morning).

He is now back home with some nursing coming in and the resident staff (PSW) checking on him. While not the main issue his face is now horribly bruised and swollen. We are now loaded with appointments in the next two weeks.

I don't seem to be able to catch a break lately. I have puppy who still needs a fair bit of focus (although it's getting easier and I love her a ton already), a pile of marking I need to do, and - oh right, my own appointments.

I'm seeing a specialist about my frequent low WBC (white blood count). Unfortunately if history serves I will be told I am a completely healthy woman as my bloods are otherwise normal (not sure why I'm going).

Wish me luck over the next couple weeks. I have a feeling my dad might become harder to care for but I'm trying to just get through each day with these emergencies that come up.