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.

Extra Challenges

I consciously and deliberately brought a new challenge into my life despite all the other challenges I face on a daily basis. For instance, working part-time while ill, caring for my dad while ill, and just being chronically ill!

The good news is while it's still really really tough, puppy has gotten easier.

She now sleeps through the night most nights (in her crate). She can also behave enough to hang out with me and Teags in the living room where I spend much of my awake time lying on the sofa. I'm still expending more than my limit of energy, but I'm getting closer to what I can manage without being constantly crashed. This week has actually been pretty bad health wise, but not all of it is due to puppy.

Also, I am forming a bond now with puppy.  Her personality is emerging and this has made a big difference. While I would probably love any dog I met on some level, the human-canine bond (in my experience) is not instant. I think the fact that I dealt with the young puppy stuff while feeling almost constantly horrid doesn't help. That said, I remember it took some time to really bond with Teags.

As someone who trains dogs (and did before I got ill), I think that training piece helps. When you train with a dog (with positive techniques), part of what you're doing is attempting to communicate. To communicate well, you need to really get to know the other individual, what they like and don't like, what motivates them. Through our time learning together, we are getting to know each other and this helps (I believe) with the bond. Ripple has learnt some basics like sit, down, target, wait, how to crate, and now we are working on a solid retrieve (this is essential as it will be a big part of how I exercise her given my inability to really exercise).

I'm now at the point that I really love the little gold nugget. She is becoming family.

I have had so much help with her it's ridiculous. For instance, the last two Fridays someone has taken her overnight. She goes to a puppy school sometimes two mornings a week (also funded by friends).

So that's my update.

Very Crashed.

For whatever reason, since coming down with M.E., late winter/early spring has always been my worst time of year. I can't figure why, I have some theories, but they are just theories.

This year I've taken on more than I have since getting ill. I have daily dad check-ins and often small care things (today taking him to the bank). I have a little puppy, and I'm also working part time from home.

I'm not doing well at all. I have been crashed a lot since I got puppy. This past week has been the worst yet and then we went and lost an hour with stupid daylight savings.

Today I feel so ill there are just no words for it. I want to crawl into hole and die. Anything to take away this horrible fatigue, weakness, breathing/chest/flu ache, shakes/internal tremor, lightheadedness and even body and joint ache today.

I have had SO MUCH help with puppy. Friends have helped almost every day and friends from a far have bought me walking, puppy care and training sessions. I have been so touched by the gestures of help. It's made me feel so loved and cared for.  Over three weeks in, and I'm still asking for or using help almost every day.

Puppy is coming along. She is sweet, feisty, confident, brave, and intelligent. She makes me smile and laugh a lot.

I think just getting a little less sleep a night, the constant getting up and down (or going to the door), and the sitting up much much more than I'm used to is taking it's toll. To be honest, I don't really know what to do.

Thankfully, in three weeks, the bulk of my course will be done (except marking) so hopefully I can tread water until then. I love the little monster and don't want to call it quits, she's already family. But I'm also so sick today it's scary.

Here are a couple more photos of my little Ripple.

Puppy

My puppy has arrived. I am in love with her but she has made life very very hard. I knew it would be hard, but I wasn't prepared for how difficult - how much energy she would take.

I am trying to work part time from home and between puppy, my father and work I am in rough shape. I've had some help from friends which has saved me so far from calling it quits.

On the positive, she is an absolute joy. A (mostly) confident vivacious little trouble maker. She also loves to curl up on a warm lap and cuddle. Watching her learn about the world, witnessing her firsts,  has been absolutely amazing. Here are some photos.

I've named her Ripple (but Riptide fits her too).

Illness course: Improvements and/or adjustments?

First, here is a heart wrenching poem about living with M.E. written by an online friend and fellow sufferer: https://www.omf.ngo/poetry-submission/united/

There are some other great poems in the series so if you have time, take a look.

I wanted to write about my illness course. For instance, sometimes I wonder if I've improved over the years or just adjusted my life and expectations so much that I interpret my health as improved.  The first year or two I probably attempted the most activity (life, work, exercise, social) in order to continue on with my life. Year one was horrible, but I also did the most.

It's so long ago now trying to recollect, but years 2-5 I feel like I was at my sickest.  Then things just plateaued for the most part.  I've experienced what I call relapses - periods longer than 2 weeks and up to 3 months where I've been sicker and lost considerable function. However, I always seem to plateau back to that same level of crap :)

And then of course those horrid  'crashes' which are the effects of doing to much - for me, these arrive between 24 and 48 hours after doing too much but typically last less than a week. It's like having a mild case of influenza but the weakness, ick, and dizziness is influenza x 3.

Another reason it's so hard to know if I've improved over time is I've both de-conditioned and aged. I've been sick going on 17 years, more than 1/3 of my life. It's hard to know what living in healthyish late 40s body might feel like.  I have no idea.

One thing that's come with both age and years of suffering and being limited is an understanding that this is the life I get - life in a sick body. Which means for me, some things are worth crashing for (not relapsing, but crashing).  The last few years I've been playing with fire a bit in that I'm pushing myself pretty hard.  I'm working part time and trying to be a care giver for my father, and I'm trying to eek out some non-work and care moments as well. While I do love being able to work, I do NOT ever want to live again in that relapsed body. It is absolute hell on wheels.

Has this fear held me back? Yes, likely, on the other hand it may have also saved me from going too far, pushing too hard.  And having lived this M.E. life for over 16 years, I've learnt something about where that line is (although I can never know for sure).

Right now I am crashed. Even standing a few minutes and my legs are shaky.  I overdid it yesterday trying to haul a piece of heavy garbage out of the snow and carry it to the car.  Today I can barely lift my arms.  No, I did not strain a muscle, this is the M.E. effect of exercise or 'pushing'.  It's like nothing I ever felt before M.E. but if I had to compare, perhaps if you exercised some muscles to the point of complete and utter muscle weakness and lactic acid burn (it's not this but it's the closest I can come).  However, with M.E. this effect shows up (for me) one or two days later. I get the same if I try to shovel a little snow. Oh and then add flu-like symptoms, shakiness, dizzies.

I won't harp on about the crash though, I should have known better.  I'm trying to prepare my house and yard (very slowly) for my new arrival in just over a week.  Yes, I went and did it, I'm getting a puppy! Maybe the stupidest choice I've ever made, I'll let you know soon enough.  I have had lots of offers of help, though, so hopefully with my village I can make it work.

If you have M.E., what has your illness course been like? Are you improved, the same, or worse? Do you fluctuate year to year?