My Body

My illness has a few different names, but they all mean the same thing. Mitochondrial Myopathy, Mitochondrial Dysfunction and Mitochondrial Disease. My neurologist explained the differences just refer to severity with "disease" being the most severe. Here's a tiny bit about what I struggle with. 

What are mitochondrial myopathies?

Mitochondrial diseases are caused by defects in mitochondria, which are energy factories found inside almost all the cells in the body. Mitochondrial diseases that cause prominent muscular problems are called mitochondrial myopathies ("myo" means muscle and "pathos "means disease), while mitochondrial diseases that causes both prominent muscular and neurological problems are called mitochondrial encephalomyopathies (encephalo refers to the brain).

A typical human cell relies on hundreds of mitochondria to meet its energy needs. The symptoms of mitochondrial disease vary, because a person can have a unique mixture of healthy and defective mitochondria, with a unique distribution in the body.  In most cases, mitochondrial disease is a multisystem disorder affecting more than one type of cell, tissue, or organ.

My challenges appear as severe fatigue, brain fog and muscle weakness in my entire body. I also struggle with cramps, spasms and constant severe pain. These are all of the reasons why I can no longer work. Yes... even a little (a question I get a lot.) "Can't you just?" NO!!!

I've had this diagnosis for five years now. In that time my muscles have become progressively weaker.

On top of my mitochondrial disease ravaging my body, I have severe head problems. "Intractable migraine" and "neuralgia" (occipital and temporal). Icepick migraines can come and visit me too. They feel just how they sound. No one flat out said as much, but I expect these are all after effects from my brain surgery in 2018. I certainly never had any of these symptoms before.

So that's my body in a nutshell. All of these issues have combined to turn me into an incredibly mindful person. I fully live in each and every moment (that I'm awake). I also actively look for the beauty and joy that is everywhere to keep me going. These coping mechanisms are incredibly effective. Well, that and a lot of drugs and medical treatments.

The down side of is I struggle to plan into the future. Not intentionally. Not in a depressed way. But like my brain is too Zen and tuned in to what I'm doing in the now. It can make even little things like what to eat or watch on TV impossible for me to decide. It's a strange feeling. Maybe my brain is simply busy coping with the war raging in my body.

Let's Play It By Ear

 "Let's play it by ear" is the warrior cry of the chronically ill. It is an enormous challenge to plan life in advance as I never know how I'm going to be feeling from one moment to the next. With this comes a lot of guilt.

I feel guilty for making my husband miss out on having people over as much as maybe he'd like. Guilty about not going to friends homes as often as I'd like. Guilty for turning down fun invitations to places because I'm too exhausted to go, or the time of day is wrong (it's during "rest time") or the location isn't accessible. 

I feel guilty not being able to spend a full day away from home and making everyone have to come back home early so I can rest. I feel guilty spending a whole day sleeping after doing something exhausting. Guilty for not helping my mom and son out as much as I'd like to. Guilt also comes when I can't do something myself and I need help. 

Behind all of this "guilt" is a great, big, SHOULD.

I SHOULD be able to make it all day long without a rest.
I SHOULD be able to go to someone's house to visit for hours.
I SHOULD be able to travel.
I SHOULD be able to make plans and stick to them.
I SHOULD be able to get up and get on with my day in a productive way.
I SHOULD be able to help others.

But none of these SHOULD's should be here at all. Because of "can't." I am a disabled person unable to do these things. That is the reality of the situation. I can want to. Even feel like I "should." But I can't. So I don't. 

So instead we "play it by ear." Adjust when we need to. Do what I can and skip what I can't. Adjust our plans (or cancel them) and work around my needs. That's the fact of life right now. No need to guilt myself about it or "should all over myself." None of these feelings are helpful or healthy.

It is helpful to remind myself of that when the guilt starts to creep up.

Turn for the Worse

On April 20th, 2022 I had my Botox for Migraine as usual. I get it every three months. It's a big deal when I'm eligible to have it done again as I'm usually a good month past needing it. This time I felt I was around six weeks past needing it.

Each time I get it the results are different. But typically every other time it is a solid 6-8 weeks of no migraine headaches and greatly reduced other symptoms (like aura's, vertigo and other vision issues.) The last two times were a bit of a dud, so I had high expectations for this round.

This must have been what Norm felt like rolling into Cheers every day.

This Botox session was different from the start. It hurt a lot more and I bled a lot, which had never happened before.

So that was April 20th.

Two days later on April 22nd a small blood vessel burst in my left eye. No big deal. I call the left my "bad side" because that's where I had brain surgery three short years ago. Although I haven't had a burst blood vessel in my eye in five years.

Three days later I could tell I was getting some kind of mouth and tongue infection. It felt like thrush maybe? But I had blistering too. Shit was starting to get a little strange.

Blisters under my tongue.

Webbing and redness inside my cheeks.

"Geographic tongue" (the spotting) and coating.

I tried treating it myself with salt water gargles, but by May 3rd it was bad enough for me to just go to my local Urgent Care. The doctor there wasn't so sure it was thrush and thought it might be an autoimmune reaction. She prescribed me two disgusting mouth washes and I went along with my life.

When I went in I had tongue pain, a sore throat and pain deep in my left ear.

Just four days later on May 7th, a large blood vessel AGAIN in my left eye burst. WTF! Now I was getting a little freaked out. I messaged my doctor and he confirmed it was just a burst blood vessel. Nothing to do but wait it out. It wasn't painful. Just a little itchy. And I felt like I looked like a zombie for Mother's Day. How fun!

My husband took this graphic picture for me.

It looks like it burst up, then the blood trickled down.

Nasty!

You'd think that would be the end of it.

But wait! There's more!

Now the excruciating migraine headaches started.

The first one lasted 24 hours. From May 9th-10th. I took my usual trio of medications to try and help. Compazine (for pain), Naratriptan (for nausea) and 1,000mg of Ibuprofen (just over the counter stuff.) I call it my "trio of helpers." I can't take them more than three times a week though. 

The second migraine was thwarted by the "trio of helpers" and only lasted five hours. That was the very next day on May 11th. On May 12th I was hit again, but couldn't take my meds so close together, so I tried to ride it out. Nope. Now I was getting scared. On the 1-10 pain scale I was at about an 8 and seriously considering going to the hospital. 

During the middle of the night on May 12th I awoke in the middle of the night to the familiar tingling feeling of a fever blister forming on my top lip. I hustled to the bathroom to dig out my herbal treatment and "doctored" it. Shaking my head I went back to bed. 

Hello fever blister.

Welcome to the party!

During the night on both the 12th and 13th it felt like something was draining down my throat. I started to wonder if I had formed some kind of abscess from one of my shots and it was draining now? The pain in my left inner ear was worse, but that could be from some kind of inflammation or pinched nerve. I was also now 100% sure that my poor immune system was being severely compromised. 

My nurse practitioner who did the Botox shots has ordered a shot of Compazine and Toradol for the head pain. I wanted to go and get it yesterday before the weekend hit, but my insurance didn't approve it yet. Seriously!?! She also ordered me a nasal spray to try through our local compound pharmacy. But it's a special order and will take some time to create for me. As much as I appreciate her solutions, it's not helping me right now. 

Today is May 14th and I'm typing this with a fever blister, migraine headache (though it is slowly improving) left ear pain, mouth discomfort and a sore throat. I'm constantly torn between trying to "ride it out" and going to the hospital. I also can't stand not knowing what's going on with my body. I like answers and solutions. 

UPDATE (June 1st):

So I believe I had a severe sinus infection that I just couldn't feel because of the Botox. What a weird thing to have happen. I suspect it was caused by my BiPap machine, so I have completely stopped using it.

After three days of "drainage" (nice word for puss) down my throat all night long I felt much better and the pressure was off my ear. I think the pressure from the infection caused those blood vessels to burst in my eye. Then my body fighting the infection caused all the other things (tongue issues, fever blister, etc...)

I had my doctor test me for sepsis just to be on the safe side. Everything was negative. I still have a strange rash that he'll check out for me Friday. I was pretty sick for almost the entire month of May. I may never know what really caused it, but I'm being much more cautious now. I'm also very impressed that my body fought it off all by itself.

Migraine Torment

I am still waiting for my Botox and to meet my new neurologist while my wonderful, usual one is on maternity leave. I will meet him and get my new shots in 10 days. Not that I'm counting. At least he finally got back to me (after an intervention by my primary doctor) and prescribed me something new to try and help in the meantime. That only took three weeks to get him to do.

My migraines are tormenting me. It feels like someone put me on a copy machine and made so many copies of my brain that now the ink is running out. I feel un-real. Not all here. Like I slipped between two realities. One of pain, dizziness, distractions and the real one. 

Conversations are hard to follow. I feel like I'm just a shadow of myself. A bad copy of who I should be. Quiet and then garbled. I call things and people by the wrong name. It takes a long time to say what I mean. It all feels awful.

I think that's one of the main reasons I tend to over eat. It grounds me. Gives me instant pleasure and makes me feel more... me! When I'm hungry that faded feeling only intensifies till I hit a point of not caring. Then it's actually challenging for me to eat.

Caring about things in my life (other than the people I love) is hard right now. The migraine just erases me bit by bit. 

I can't wait to get my Botox and start to feel like myself, even if it's only a minor improvement. Anything is better than this.