Fatigue Rescue?

I'm still recovering from a recent bladder infection. Those strike me from time to time and are common with wheelchair users, especially women. I have an issue with my bladder muscles not wanting to let go when I... um... GO. It's called "retention" and that also puts me at a higher risk for infection. Hey... Aren't those tulips beautiful! I thought we could all look at something pretty while talking about bodily functions.

When I'm sick my afternoon "naps" (or "curse" as I really think of it) eat up more and more of my day. Makes sense. We all need rest when we don't feel well, but I end up sleeping my life away. 

I'm excited at the prospect of something new that might help me. Epicatechin. As I said before my neurologist recommended I give it a try. It's an over the counter supplement derived from chocolate, so why not?

This is what I went with.I've had three doses now and honestly can feel a difference. I took my first dose last night and indeed it did keep me awake! I took another dose this morning with a banana and another with lunch. I feel much less tired than I normally do at this time of day. Like how I used to feel if I ate some chocolate covered espresso beans. The thought of having found something that can possibly wipe out my 2-4hr nap every day for $38.95 a month makes me excited. I hope, hope, hope this stuff really does help and I don't just acclimate to it. 

What's New?

This time last year I was responding well to my Mito Cocktail. I had a real increase in energy and stamina. I suspect what happened with the Mito Cocktail is that my body just adjusted to it and it stopped working as well. 

That happens to everyone with almost all medications, even recreational drugs. I'm no longer taking the Idebeone. I tried it for three weeks and it didn't work for me. I had an increase in cramping, spasms and muscle pain, plus it upset my stomach. So two weeks ago I went back to my COQ10 and I feel like I'm still adjusting.

I continue to be less fearful than a year ago and am still rocking a bikini. I also take care of my "tasks of daily living" independently. I even made a quick store trip with my son yesterday, just the two of us. That felt really good.

As far as medications go, here's what I'm currently taking:

Prescriptions Taking

LevoTHYROxine 125 mcg AM

(Pregabalin) Lyrica 150 mg BID

(Duloxetine) Cymbalta 60 mg PM

(Lioresal) Baclofen 20 mg TID

Albuterol Inhaler PRN (apx 6 puffs spread out daily)

PRN

Acetaminophen 500mg +2 PRN

(Rizatriptan) Maxalt-MLT 10mg PRN

Albuterol Nebulizer (DME) PRN (not used yet)

5:1 (CBD:THC) Tincture or Edible PRN

Supplements

COQ10 300mg 5x a day (1,500mg total)

L-Arginine 500mg AM

Vit. D3 2,000IU AM

Wild Alaskan Fish Oil 1,400mg BID AM/PM

Biotin 1,000mcg AM

Magnesium Citrate 250mg BID AM/PM
Potassium 99mg BID AM/PM

MigreLief supplement BID AM/PM

B-2 400mg

Magnesium (citrate and oxide) 360mg

Feverfew (whole leaf & extract) 100mg

I have a fantastic A Team behind me now including multiple people who know about Metabolic/Mitochondrial Myopathy. My neuro muscular specialist just suggested I try epicatechin to see if it helps my muscles at all. She said there's some good results with it helping protect the heart of people with MD. I will give it a try since it's an over the counter supplement.

She also reminded me about the muscular benefits of Epsom Salt Baths. It's not easy for me to get in and out of the tub, but it is possible. I will try and add these to my regular routine as well. We have a big bag of it from Costco.

The biggest news for this month is I got adjustments for my big chair "Dory". I got a new seat, new headreast and (*insert drum roll here*) KNEE ABDUCTORS! That's a huge deal. No more leg straps for me!

Also fantastic is that she's on a bit of a tilt back so I don't slump over myself when my trunk muscles fatigue. Stamina is not my friend.

"But what about Plan Kick Ass?" 

I've integrated a lot of it into my daily life. I try and eat more fish and veg then I do land animals. I move as much as I can and in general make my health a priority. Of course I still have things that aren't the best for me, but I try and notice how food makes me feel after I eat and stick to the things that make me feel good.

Here's some things I'd like to change, work on for the future:

• Stretch twice daily
• Take Epsom Salt baths
• Try the epichatechin
• Explore CBD more
• Go back to smoothies every morning

Lastly what's new with me is that I'm trying some high CBD, low THC products to help with pain and muscle cramps/spasms issues. I don't like taking Acetaminophen for pain all of the time and I don't think it honestly helps that much anyway. It's hard on my liver and kidneys and can cause stomach irritation if I take it too often. I feel there's less of a physical risk to my health taking a more natural product. So far I have tried oils, tinctures and gummies. It's legal in my state and very available. I'm open to trying almost anything that could improve my quality of life.

So that's where I'm at medically right now. Taking things day by day and focusing on the positive. I'm keeping connected with my friends from my Muscular Dystrophy support group and family. That's always helpful for keeping my mood up. And my mom has been stuffing me full of delicious foods. I try and get outside to get some sunshine when I can. Now I'm off to make a smoothie!

Welcome to my world!

I was explaining to my husband this morning that as a person with a chronic illness I feel like the whole entire world now gets to experience my life every single day.

Can't go to your office to do a job you love?
Check
Worry about falling ill and dying constantly?
Check
Can't leave your house and do what you want when you want? 
Check
Social isolation? 
Check
Limited mobility? Can't ride the subway, train or hop a bus? 
Check 

Yup. That's my reality.

We belong to a fun local social group and I'm able to participate minimally due to my health and mobility needs. Now everyone is in the same boat so they're thinking outside the box and doing things like Zoom meetups. Because when healthy, able bodied people become affected by something, that's when the problem solving and alternative solutions come out.

Work from home everyone!
Stay safe and take care of your own needs.
Take plenty of time off when you're sick or your family is ill.
Financial compensation for your loss of income.

Where are all these solutions for the disabled population?
I'm talking globally here, not just in my town, state or Country. 

I hope when the Coronavirus crisis is over some of these changes remain in place for the percentage of the population who could use the accommodations daily. And also that now healthy, able bodied people come away with just a bit more insight and empathy about what it's like to live every day of your life this way.

Staying Healthy!

As of yesterday my town is on lockdown. No one can leave the house except for emergencies or necessity like picking up medication or food. For the last week I've been ramping up my cleaning and trying to keep my family and myself healthy and safe.

Here's some things I'm doing.

We've all been ramping up our vitamin C intake and eating healthy, balanced meals. This was my breakfast this morning. Slow cooked organic oatmeal sweetened with dates, cinnamon and nutmeg. Mmmmm! We've been having some rain and cold so this warm bowl hit the spot.

I'm also very lucky to have access to good produce. Honeycrisp apples are my favorite and my husband makes sure we always have some in the house.

I made a "cleaning bin" that I have out in our living room. This has the last of my Clorox wipes, spray disinfectant, paper towels, rubber gloves and a spray bottle with 4tbsp bleach and the rest is distilled water (for spray disinfection). Anyone coming or going can find what they need in this bin.

After doing a LOT of research on what will kill the Coronavirus I found that just pure household Hydrogen Peroxide does a great job. I got 2 giant bottles of it at our Costco for $2, then bought spray bottles at the Dollar Store. This whole bottle was about $2 and will last a verrrrrrrry long time. Thinking outside of the box will help my whole family stay health!

This is my son's work area. He's staying healthy by taking his daily medications, taking hand sanitizer out with him and using it after washing hands when out. These lens wipes (also from Costco) have alcohol and are a disinfectant as well. 

We're all wiping our phones and computers down daily. I wipe down our counters, door nobs, fridge handle and other highly used things in the house daily. 

We're also sharing what we have with others. My son was letting friends use his hand sanitizer and I left an individually wrapped wet wipe out for our postal worker. 

I love to see the community coming together and helping each other. Crisis can either bring out the best in people, or the worst. So far I'm seeing the best in people.

Remember How to Play

Why so serious?

My son told me last night that he's taking a break from Facebook for his mental health. I applaud that level of self care. Another important thing to remember with all the stress people are under right now is how to play. Your inner child needs to be fed more than just ice cream and Taco Bell. They need to play. YOU need to play.

When was the last time you played?

Do you remember how to do it?

Play is vital to keeping your mood up, interacting with other people in positive ways and helpful for your relationships! Here's some ways that my family and I play. 

Go for a nature walk and touch everything.

Go to an art supply store and buy whatever looks fun. Even if you've never used it before. Make yourself an art basket and keep it out where you can see it. 

Do some doodles.

Take pictures of yourself making funny faces. You DO remember how to make a funny face... right?

Go to a thrift store and "rescue" a stuffed animal. Or better yet, find one in a dumpster! Take it to a public laundromat and clean it all up. Give it a second home and a new life.

Paint your toes the color of the rainbow and find some shoes that look like muppets. 

Make funny faces with your pet and take pictures. Or just rub and nuzzle on them.

Buy yourself a tiara. Because everything is better when you're the boss!

Stop and smell EVERY single freaking flower you come across. Even if it's just at the store.

Go look at some art. 

Blow some bubbles, or a pinwheel.

Do a puzzle. Especially with someone else.

Paint a picture of your pet (even if you think you're not any good).

Other ideas:

• Sing your favorite song really loud
• Make yourself cupcakes
• Go outside and play in the mud
• Make a fairy house out of stuff you find
• Start a new hobby (like air plants or Yoga)
• Taste something you've never had
• Have a pillow fight with your partner
• Try a new musical instrument
• Buy some sidewalk chalk and decorate your street
• Make a nature crown for your head
• Look for interesting bugs
• Learn to juggle tissues
• Teach yourself tarot or runes
• Make a big batch of something delicious and share it
• Dig out your old video games and have a retro game party (ditto for board games)

Living in fear

Wasn't there once a high school class called "Health and Safety?" I seem to recall making kissing jokes while people tried to perform CPR on a dummy. But that was a very long time ago.

Today with the Coronavirus all over the news health and safety are at the forefront of my mind. Not "stockpiling toilet paper" on my mind, but enough on my mind that I'm taking extra precautions. Given my heath issues I don't think it would surprise anyone if I just self quarantined till this was all over. But I'm not. Here's why.

Shopping at Costco with my cotton gloves on yesterday.

Five years ago I contracted TB. It's also an airborn virus that frequently kills people. Fortunately for me there was treatment for it, although nine months long and damaging. After I recovered and was about to return to work I developed a serious phobia. My phobia was about people coughing and being in close contact with others. Strangers were the worst. If I had to shake someone's hand I was left almost in a panic. I had developed a real germ phobia that was interfering with my life. 

What got me out of it was this. I realized that the fear of getting sick again was ruining my everyday life. My quality of life was going down because of fear. So I rationalized with myself. Told myself I can take reasonable precautions (not hug someone whose sick, buy an air purifier for my office), but that anything outside of hand washing and common sense was just me letting the fear into my life. I refused to do that so I decided not to. And that was it. Literally from that day on the panic stopped. 

Fear was telling me that I was going to get sick again. Something in reality I have very little control over. Zoom ahead five years and I still refuse to let fear dictate my life to me. No one knows how long they have. I could be in a car accident, get run over in my wheelchair, get food poisoning, have a stroke. I have no idea how or when, but I do know that I'm going to make the most of it and not live in fear.

I will wash my hands for 20 seconds, I will brush my teeth twice a day, go to my doctors appointments, use hand sanitizer and not be stupid. But I will not stock pile toilet paper, buy every Clorox wipe there is, or cancel plans I've looked forward to because of fear. Fear will not dictate my life or how I live it. That's a choice that I made years ago and I never looked back.

Starting Idebenone

My mid-day exhaustion is a serious problem. Not being able to do anything "all day" has more of an impact than you would think it would. I miss out on a lot of life by sleeping from 3PM to 6PM every day.

I talked to my new muscular neurologist about this and asked if there was some kind of "ATP Booster" that could potentially help lift my afternoon curse. (If you don't know what an ATP is, check out this short, link to Mitochondrial Disease. It's really fantastic). She suggested I try a supplement called Idebenone. Actually, she was the second person to tell me about it. The first was a brilliant man in my MD support group.

Today's my first day on it, replacing the COQ10 that I take every day... all day every day. I'll take 500mg once a day for two weeks, then two of those a day for a month to see how it goes. My hope is that I'm able to sustain my energy and make it through an entire day without a nap.
"...idebenone is thought to increase the energy production inside cells as well as protect the mitochondria (and the cell) from damage."
Now you might think "well, what's wrong with taking a nap every day? Who wouldn't love that?" I'm guessing that's what you might be thinking because once upon a time I would have thought that too. I love naps actually. But that's not what happens to me. 

What happens is my body slowly shuts down and I "crash" more than nap. My muscles get weaker, it takes more effort to talk, my short term (working) memory gets worse and it becomes difficult to focus my eyes. Once my head hits the pillow I'm out like someone chloroformed me in an Agatha Christie book. Out-out. See the difference? Not fun at all and totally mandatory for my body.

This has been happening since late October (about four months) and I'm frankly concerned about it getting worse. A one hour nap increased to two then to two and a half and now three hours is pretty common. What if one day I just can't leave the bed? These are the thoughts that scare me.

On the plus side Idebenone has had some positive results in research, so I'm hopeful. I typically respond well to new things at first, but then adjust over time and they stop working as well. But I'm strong, brave and hopeful.