I was worried about going back to work. I’m not sure why, I think it was just because I was feeling fatigued and low energy. I had nothing to worry about, my manager is super understanding and I still remember what I’m doing. Two things that made this much less stressful then it could have been.
It also helps that everyone else took some vacation over December so my projects were slowed down.
I took my last dose of the heart pills Wednesday morning and spent yesterday compulsively checking my heart rate on my phone. It was a little elevated (maybe from me stressing about it?) but still within the norm.
Overall, it’s been a good week. Let’s hope today continues the trend.
I’m back at work today, Dragon goes back to school, and life restarts after an extended break.
As I write this, I just finished reading the comments section on a Facebook post from Ottawa Public Health. I see in the comments a combination of anger and fear that is extremely familiar. Those that aren’t fake are people trying to come to terms with a world that seems to be falling apart. I understand the anger, I understand the frustration, and I understand the helplessness.
Unfortunately, we are in the golden age of cults. Yes, cults. From Dictionary.com, “An instance of great veneration of a person, ideal, or thing, especially as manifested by a body of admirers”.
Cults used to need to isolate and cut people off from their support systems in order to take advantage of them. In our curated digital world, it’s easy to find oneself isolated into specific communities with extreme ideas. My tik-tok is heavily queer, neurodivergent, writerly, and ttrpg based with a smattering of food and nutrition. I doubt that’s others’ experiences.
What this means is that we’re seeing more polarization and more us-vs-them and a lot more confusion. When everyone around you says the same thing and suddenly others are saying differently, it’s jarring and a little scary.
It’s a form of Cognitive Dissonance. That gut instinct of “am I wrong?” followed by either doubling down on your beliefs or challenging them. Unfortunately, there’s a lot more doubling down, especially when you are scared.
Basically, what I’m saying is that social media is a grade school rumour mill taken to the extreme. What that means for humanity is still to be decided.
No matter how hard it is to see, there is hope. Change is slow, social change doubly so. But every generation pushes it further. For every cult leader out there, there are people working to debunk their lies. For every 10-50 hate-filled comment, there are real people sharing their truths.
Hope in and of itself is powerful, with hope we can find the good. Without it we are lost.
What we can do is hard and doesn’t always work, but we can be kind. We can help those in need. We can tell the stories that need to be told. We can defend those who need it. And most of all, we can question everything.
Bad news is that I’m still coughing and still have a leaky nose. My voice is still off and I can barely hit medium notes. On top of that I’m still not at full energy, I’m having trouble standing/walking for more then a half hour without feeling faint. I’m still very dizzy but that is a side effect of the pills they gave me for my heart.
Good news is that I’ve got more energy then I did, I don’t need naps anymore. I am able and okay with writing. I can think clearly most of the time and I should be fine to work from home next week.
Unrelated to the RSV, I still have numbness in my face and pressure in my left temple. My wrists and arms are not bad, which is nice.
I have an appointment with the MS clinic next week, an internal specialist in 2 weeks, and the heart institute in March. Hopefully one of them will help with the long term stuff and hopefully the RSV leftover symtoms will go away.
Thanks for following and hope you have a healthy new year.
Sometime in the end of November, Dragon got sick again with her third cold. It quickly passed to Pegasus and to my mother-in-law. Jen and I were mysteriously unaffected.
Then I got a tickle in my throat and HUNGRY. As long as I can remember, when I start a non-vomiting cold, I get ridiculously hungry. Maybe my body is trying to get things ready for a bad cold.
By Saturday December 2nd, I was sick. I had trouble eating, moving, and talking. I tried to drink water as much as possible. Soon it was getting hard for me to breathe and both kids were still feeling it. We saw our family doctor on the 5th and I was prescribed a puffer and tests. Jen had a tickle by that point.
My nights were spent coughing and trying to force air into my lungs. In the Thursday as I was about to get a chest x-ray, my watch beeped and said something like, “You’re at rest and your heart rate just jumped, are you okay?”
Friday the 8th, I was sitting on the couch feeling my heart beat fast and not able to catch my breath. Finally Jen said, “Maybe you should go to the hospital?”
I didn’t want to. I didn’t want to leave my house and comfort, but my chest hurt. Jen called 911.
The ambulance took me to the Civic hospital where we found out:
My heart rate was 230 (normal resting is around 80-90)
I was dehydrated (probably from not being able to eat much, diarrhea, and fever)
I had low potassium, sodium, and magnesium
I had no vitamin D (doctors used the words “impossible” and “weird” more than I like about this)
I had a mild urinary tract infection
All of which was being caused by severe case of RSV and mild pneumonia.
At the hospital, they tried to shock my heart back into normal rhythm (twice) but it didn’t work. They gave me an IV with multiple medicines to help bring my heart rate down and by Saturday afternoon it was in the low 100’s.
Art by Dragon that was brought to the hospital in a care package along with some clothes and toiletries.
The rest of the weekend was spent coughing, hooked up to machines, and eating way too much crushed ice. The hospital staff took amazing care of me and I would be dead right now if not for them.
I was released on Monday, with pills that would control my heart rate, vitamin D supplements, and a plan to look in on me. They assure me the heart rate won’t be an issue once I get over the cold and I’ll be back to normal. (There was a hiccup with one of my IV sites getting infected, but I’m on antibiotics now.)
Now I need to recover. I’m still sick with RSV. I have no voice, my nose leaks, I’m coughing all night, I feel weak and dizzy. Several times I’ve worried about collapsing ,but I’m getting stronger.
Jen really stepped up and even through her own sickness (much shorter and milder than the rest of ours thankfully) made sure the kids and house were taken care of. I’m really proud of her.
We had a lot of support. My in-laws have been stalwart helpers, drivers, and kid herders. We also have amazing friends and neighbours who checked in and made sure we were okay. Thank you!
My work has also been super understanding and accommodating.
As of this writing (Thursday evening) I still have but a whisper for a voice and I’m easily tired, not to mention coughing, but I do feel better. It’s going to be a long, slow recovery for me.
Jen and I are writing the next book in TheGates of Westmeath series and it’s awesome. The only thing keeping me from binge writing right now is that we’re doing the first pass at editing Monsters! Incidental Wedding Guests (Coming June 2024). As much as I love writing, I despise editing. Like everything else in the writing process, it’s much easier to do with Jen.
Renaissance has Copper Tarnish, Stories! The First Unexpected Collection, and Faymous and I will hopefully hear in the new year if they’ll publish or pass.
Work
I’ve been acting (in government that means I’m doing the job but it’s not permanent) at a higher level as a Web Accessibility specialist. It’s pretty much an evolution of my old job as print and PDFs fall out of favour, but it’s a promotion.
This week I signed my papers to make it permanent. It’s better pay and duties that are no longer 10 years antiquated. So yay!
Health
I’ve seen a neuro-opthamologist and had lots of tests including another MRI. Everything came back clean except for a loss of vision in my left eye and the fact that my left eye dilated slower than my right. He thinks I had some sort of nerve issue and he’s sending me to a neurologist and has set up a follow up for June.
Yay nothing serious and that he believes me but boo I didn’t get any answers.
It’s been a year now since I returned to work and a year and a half since I hurt my arms.
Good News
My arms are staying steady. They almost always hurt, but not enough to affect my quality of life much. I’m mostly doing my exercises and massages and it’s helping. Some days are worse than others, but overall significantly better than I was this time last year. Maybe it was muscle strain and stress.
My doctor sent me to get an MRI. The MRI showed no signs of brain cancer or Multiple Sclerosis. Which is a good thing.
Bad News
The MRI did show something on my left ocular nerve. Combined with the numbness in my face, loss of vision in my left eye, left temple migraine, and vertigo; the doctor made a referral to a neuro-opthamologist with the eye institute.
I had my first set of tests today and will have more in the coming months. They also want to do a targeted MRI for the ocular nerve.
At least they believe me and are trying to figure out what’s wrong.
That’s about all I have, I hope your health improves or stays awesome!
My mysterious illness where I have bowel cramps, fever, aches and pains, and weakness; came back again. I think it might be allergy and / or overdoing it related. I’m not sure. I went to the ER in 2018 for it and they found nothing, I saw my family doctor and he did blood and feces testing and he found nothing, I saw a virtual doctor and he told me I was fat. My family doctor said we’d deal with it if it happens often, but I’m not sure what that can be defined as. It only happens once or twice a year.
That came back and hit me like a truck. Some of the worst pain I’ve had since COVID, hard to breathe, fatigue, aches and pains everywhere, fever of 102-103F, and mind fog. It hit me on the Monday night of last week and I’m still dealing with the fatigue and some minor bowel issues.
I still think it’s a combination of allergies and stress. I had hung out with a few cats, outdoors, and I also went swiming (I have had mild allergies to bromine and chlorine since I was a kid.) My google-ing (yeah I know google isn’t a doctor) seems to think it’s my body thinking I ate allergens and going extra and attacking.
Arms
As I mentioned in my June Update, I’ve been doing physio with the Ottawa Workers Network, through WSIB. In June, I said my pain was at 6-7 out of 10. I’d say it’s closer to a 5-6 now. I’m hoping the change is because of treatment and not just because I’ve been off more than working the past few weeks.
I’d say that for the past month my pain is ever-present but manageable. Which was the WSIBs goal.
I had my last treatment and assessment on Tuesday. I’ll have a follow up on Monday to talk to the elbow/shoulder surgeon and it’s expected I’ll be discharged and cleared for a full work schedule.
The numbness in my arms has gone down but isn’t gone completely.
The numbness in my face has gotten worse.
The vision in my left eye is about the same,, but I’m getting more shadows and having a hard time with my night vision from that eye.
I’m still getting dizzy spells that feel like vertigo. Like the whole world tilts sideways.
Clumsiness
My Occupational Therapist says that the clumsiness is due to the injury screwing over my spacial perception.
As for the inability to know how much I’m gripping and dropping things, she says it’s a combination of that and a side effect of my mild carpal tunnel.
MRI
I have an MRI today in Kingston and hopefully it’ll help figure out what the problem is. I hope it’s clear, but I also want to know.
Overall AKA TL:DR
I’m doing a little better but I’m worried about the root cause. MRI should help eliminate the worst case scenarios.
A lot and very little has happened since my April update.
Let’s start with good news. I have a date for my MRI on July 14th. I also have a date to go with (Jen will be driving me. With two kids you must take whatever you can as a date.)
What’s Going on with Treatment
It looks like my time with the OWN treatment team will be ending in mid July. I’ve been doing exercises to strengthen the muscles, physiotherapy to loosen the muscles, and some therapy to think about muscles.
The therapy has been helping the most, stress relief and permission to be selfish and self care are good. I’ve also been given some techniques to control my emotional spirals and overreactions.
The exercises and physio have been maybe helping. I have better control of my fine motor skills and my physio says my muscles are looser. They’re going to give me a home routine.
We’re also working towards getting me back to full time work instead of my old schedule of 30 minutes on and 30 minutes off.
How am I Feeling
My pain is steady. That sounds bad, but it’s actually a good thing. I’m not experiencing any massive flares. I’m still at a 6-7 pain level, but no more jumping to 8 and feeling sick.
The numbness in my arms, hands, and face are still there and haven’t changed. The vision problems I’m having with my left eye are still there. I’ve had a couple of really scary vertigo episodes where it felt like the entire planet shifted 90 degrees. Not fun.
My mysterious illness where I have bowel cramps, fever, aches and pains, and weakness; came back again. I think it might be allergy and / or overdoing it related. I’m not sure. I went to the ER in 2018 for it and they found nothing, I saw my family doctor and he did blood and feces testing and he found nothing, I saw a virtual doctor and he told me I was fat. My family doctor said we’d deal with it if it happens often, but I’m not sure what that can be defined as. It only happens once or twice a year.
Now we wait and see what the MRI says. WSIB will be washing their hands of me in July and I’ll be doing what I can to manage the pain. They say that my body is reacting well and that the pain will reduce over time. I hope they’re right.
Some weeks are hard. This was one of those weeks. I’ve been working through a lot of emotions. Among them is the fact that I’m still in pain. I know that a new physio for two weeks isn’t going to fix everything, but I was secretly hoping.
Let’s break this down into categories:
Writing
I’m currently finishing the longest running project I’ve ever had (started in 2016) and I’m really hoping to be done by summer. It’s going slowly, mostly because of pain, and I worry it’s crap but at least I’m having fun writing it.
Family Life
I’m trying my best to be a good father and a good husband. I know that I haven’t always been perfect; I’m a little whiny and I over explain and analyze everything but I’m trying. This week I’ve felt like I’m not enough and that’s really frustrating.
Work
I have a similar issue at work. I think it’s time for me to find something new. I’m fairly certain that within a year, my position will be cut and after 15 years, it’s time to do something new. The problem with that is because of my health issues and lack of return to full time work, it’s not easy for me to convince anyone to hire me. So I feel a little trapped.
Health
I’m seeing a team consisting of a physiotherapist, kinesiologist, and occupational therapist. They are trying to help me get back to work.
While they’re doing that, I have an MRI for my head, neck, and back set up for mid July.
Dad
My father’s birthday was earlier this month. He passed away at the age of 47 from brain cancer.
He was 40 when he was diagnosed. Considering my health issues, it’s hard for me not to worry about this year. (I’m turning 40 in July.)
It’s one of the reasons I’m really glad that I got that MRI. At the very least we’ll know something. The MRI should be able to detect brain lesions from MS or brain tumours. Hopefully there’s nothing to find.
Mental Health
With all of the above I’m struggling, but my occupational therapist is helping me find coping mechanisms and to rationalize instead of spiralling. That part is helping and I’m trying to be kind to myself.
Since my last update I’ve started physio, exercises, and occupational therapy. It’s only been a week, but it feels like a lot of effort for little gain. I’m going to continue because at least it’s completely covered by WSIB. The people are nice but everything feels fast.
I saw a pain doctor. He was rushed and said I should continue what I’m doing and gave me some exercises that are the same as the kinesiologist has been doing. I’m glad he didn’t give me any pills. I’m already dealing with a lot of mind fog, I don’t want to deal with any more.
I had called my doctor to try and talk to him about MS and I managed to get an appointment. He said I had a lot of the symptoms but that the neurologist should have caught it. (Same guy who told me I was too young and should just ignore it.) However since I have the symptoms he has referred me to get an MRI. It’ll image my brain, neck, and back to make sure. This should help diagnose MS or any form of cancer.
My father died of brain cancer and my grandmother of leukemia, so I’m trying not to panic at the idea.
Reality Sucks, or Yes, I am disabled
I’m starting to come to the realization that I’m disabled.
My energy levels, lung capacity, and overall strength have never fully recovered from covid in February 2020. I’m told it’ll get better, but it’s a slow process.
Add to that the dizziness and fatigue I’ve been feeling since last year and it means I’m not in good shape or feeling well. In short, I’m disabled.
It’s frustrating me because I am physically able to do almost anything I need to but I start getting tired and pained quickly. If I push myself too far, I start to get dizzy and clumsy. Just setting up my backyard, with lots of help from the kids, left me feeling horrible for two days after. Headache, inability to think, pain everywhere, short of breath, fatigue, and extra pain in my arms.
I’ve been experiencing something similar with picketing but that’s a different post.
Accepting that I’m disabled means I need to start finding my limits and living inside them. Once I know what’s wrong, I can hopefully work up to increasing activity. For now, I’ll have to be extra careful with gardening.
So that’s my update, it’s all over the place but I’m okay and things are moving. Let’s hope it’s in the right direction.
