I'm melting and I can't get up

Oh LORDIE! Summer is here. We've had weather in the high 90's already. Multiple days in a row. Something I've learned about my mitochondrial disease is that heat affects me in a major way. Too cool and my muscles cramp and spasm. Too hot and I very quickly wind down and have zero energy or muscle strength. Jeeze. win-win. Strangely humidity doesn't seem to effect me as much as it did when I was healthy and able bodied. 

It's not all fun and games when I'm too hot or too cold.

I was just outside talking to someone for about 15 minutes. It's exactly 90* outside right now. I literally felt like I was going to die.

Some great tips to keep cool that I've recently learned are:

• Vicks Vaporub (menthol gel) or peppermint oil on your skin will help you cool off fast when combined with a fan.
• Keep ice or a cool towel over your heart and on the back of your neck.
• Keep an electric personal fan on you.
• Wet a scarf and wrap it around your head.
• Stay inside where it's air conditioned. Hah!

IT BURNS!

I'm going to have to learn to turn people down for outside activities during the summer unless at night or involving a swimming pool. A new area to advocate for myself. And like most things going on with my body, this temperature sensitivity seems to get worse every year.

 

What is a "disability" anyway?

I consider myself to still be disabled. Many people would see me at the gym, or scrubbing down my kitchen counters and disagree. So why do I claim the word "disabled." What does that term mean to me?

To me any disability is something that gets in the way of your baseline functioning. That baseline is different for each person in the world. Only you know what it is. 

People with insomnia are disabled. If your depression makes you late for work, you have a disability. It's not just someone using a piece of durable medical equipment. A wheelchair, cane or walker. It's not someone with a missing limb or using sign language to communicate. And most of the time it's something you can't see. Like Autism or Mitochondrial Disease.

Yup. Still disabled.

I am disabled. I suffer from horrible chronic pain even now. A few times a week it makes sleep challenging for me. I take a slew of medications to try and keep at a level of pain that I can tolerate. I struggle with nerve damage on the side of my face where I had my brain surgery. It hurts when it is even touched. Often it hurts when it's not being touched. The Botox I take for my migraines helps it incredibly. Botox is a huge tool to keep the pain, dizziness, auras, pressure and other issues from my craniotomy at bay. But even so I have "breakthrough symptoms." Especially if the weather changes or I travel to even a slightly different elevation.

My migraine symptoms often make my head very fuzzy. My constant body pain doesn't help either. This impacts my memory. I often forget what I was saying, especially if someone interrupts me. Remembering names is a nightmare. I wish the world wore name tags.

You can't see any of these things. I don't go around screaming or crying when I'm in pain. The metal plates on my skull are on the inside (thank goodness.) I smile and get on with my life. If it gets too bad, I'll go to bed and try to sleep till the extra medication kicks in. I'm working hard to feed my body right, get rest and build muscle. That is a full time job for me right now and I'm unapologetic about it.

So yes I can walk, laugh, use gym equipment and stay awake through the day (most of the time). I am still a disabled woman and likely will be my entire life. My symptoms are just managed (most of the time) with a lot of hard work and great medical care.

I'm a pretty big deal

My strength is gaining and I'm feeling good about gently pushing myself. I feel a bit stronger every day. Today was the biggest push yet. I used a shopping cart when we went to Trader Joe's.

I picked this store because it's very small, the parking is very close to the door, I know it well and if I couldn't do it they have electric carts right outside the door, so I wouldn't even have to bring my chair. 

As you can see I did do it! My entire shopping list. I felt like such a freaking bad ass!

I felt like my organs were shifting down as I walked. It occurred to be that sitting in a chair does squash everything down, so I'm sure that they are needing to re-adjust. What a weird thought. 

Towards the end I was starting to sweat a little bit and feel fatigued. My muscles still felt strong, but I felt tired.

We guessed that I shopped for at least 30minutes. I'm so impressed and proud. It felt like a good stretch of my physical abilities. 

Pushing Myself Hard

Spring is here where I live and I have been a busy bee. My Mom's swimming pool is back open and we were the first ones in it again. It felt fantastic to be back in water. There's no other workout like it. From the first day back in the pool I decided I was going to push my muscles.

Still working out with water weights.

I felt like all winter I physically atrophied. I did the basics, but not really anything that pushed me physically. The only way I can keep what muscle I have (or hopefully build on it) is with pushing myself. I'm already in physical pain every day. There's nothing like fresh pain to make you forget your old pain. And boy do I have pain!

But I also think it's a kindove good, almost normal pain. Like the buff girl limping as she leaves the gym. It is also teaching me about my body. I'm much stronger than I think I am. Strength isn't my problem. Stamina is.

Getting the summer garden ready took a lot of strength!

I've also learned that my lower back is the first muscle group to feel the pain and to give out. My back brace is a big help, but it doesn't solve the underlying problem. I'm going to do some targeted exercises in the pool to see if that can help. 

I have my recent MRI to thank for this push. It was incredibly painful to endure laying still on the table. My right leg and back were screaming at me to stop. But I pushed through the entire process. I was able to go much further than I thought I could. To tolerated more pain then I thought. This got me thinking about the limits I place on myself and my body with my mind and my fear of pain.

Now to be clear, I'm not going into Rhabdomyolysis or running miles around the block. I'm cleaning, gardening, moving small things around, re-potting plants (that are heavy for me.) Pushing myself in all these areas of what I usually do. I've been cooking dinner at night as well. These are all tiny things to most people, but each activity leaves me drenched in sweat. Seriously. I can't remember the last time I sweat this much and for so many days in a row. I do not enjoy that part, but I do like feeling stronger.

I masked out where our new TV is going.
This was a ton of work!

Nothing Short of a Miracle

Hello!

Long time no see.

Why not?

Because I just didn't have the energy.

A few months ago just the simple act of showering or dressing for the day was leaving me exhausted. My "afternoon rest time" was more of a coma that would last 4-4 1/2 hours each day. I had just enough energy to bathe daily and try to spend time with people I loved. That's it. And things felt like they were just getting worse from there. I lived in fear of becoming bed bound.

I reached out to my muscular neurologist in a last "Hail Mary" plea. I let her know my fears and how bad things had become. She had one last suggestion that we hadn't tried yet. A new drug being used to treat muscular diseases (*off label) called Amantadine.

I started Amantadine about six weeks ago. The difference was immediate and drastic. I would call it a miracle. It immediately gave me more energy than I'd had in about five years. Not only that, but it helped decrease my vertigo symptoms as well. Something nothing else had been able to do, even Botox.

Then something even more fantastic happened. My "rest time" decreased to an average of two hours. I gained back 14 hours of my life per week. That is so amazing that I can't even express it. That's like all of the Harry Potter movies every week's worth of time.

Also what changed was that energy translated to more muscle strength. Even though it didn't help my muscles directly... having more energy meant I could accomplish more in a day, which often required muscles. Like cleaning, gardening, fixing my hair, putting on makeup. Things that before I had very little energy for I could now do back to back to back. Laundry, cooking, playing with my dog. You get the idea. All requiring muscle strength and stamina. So the more I did, the stronger my muscles became and I had a little more stamina each time.

And now the HUGE news.

Yesterday I did something I haven't done in five years.

I walked my dog around the block using just my cane.

Yup. It felt like I had just climbed Mt. Everest. I was elated. 

I called my husband right away and he was just as excited as I was and so proud of me for pushing myself.

So yes, I still have my muscle disease. I haven't been "cured." But I have a huge chunk of my life back. I hope to continue to build on this. I will gently push myself and listen close to my body. I'm still down 30lbs from where I was last year, which is another thing to be proud of. No easy accomplishment. Any of it. 

I'm proud that I asked for help. That I communicated what was going on with me to my medical team. That I listened and was always open and willing to try new things. And that I'm fortunate enough to have good medical care! I feel lucky, resilient and determined. 

(I received no incentive to write this. Amantadine is also called Gocavori. Here's more information about it if you're curious. I don't have Parkinson's, but it still helps me.)

*"Off-label" means the medication is being used in a manner not specified in the FDA's approved packaging label, or insert. Every prescription drug marketed in the U.S. carries an individual, FDA-approved label. This label is a written report that provides detailed instructions regarding the approved uses and doses, which are based on the results of clinical studies that the drug maker submitted to the FDA

Dreams and Reality

I often lay in bed and question what I can and cannot do. I picture myself going for a run. Or even just walking around my block. I ask myself if I'm sure I really can't do these things. When was the last time I tried? How do I know that I can't do it unless I give it a go?

In my head I strap on my tennis shoes (that now belong to my husband because we have the same size feet and he's... well... able bodied.) Then I go for a light jog around my neighborhood just like I used to.

Suddenly I'm no longer running, I'm surfing (something just as realistic). I'm up on a long board alone zipping over clear teal water. I wave hello to the fish and turtles under me. 

Next it's stairs. How many stairs can I climb? By myself? While holding the rail? Not at all? I picture myself in a stadium zipping up endless steps. I'm wearing short bike shorts and looking like a trainer from Biggest Loser (and not the contestant body I currently have).

When I wake up I decide to try something out.
I don't strap on my tennis shoes, or scrounge up a surfboard.
But I eye our kitchen step stool. The one with the big handle.
I figure I can go up and down that and it can count as a "step."
How many can I do?

Well... Without holding onto the handle I can go up and down 4 times. Four steps on my own. Holding onto the handle I can manage 7 (which impressed me!) Seven steps, but I feel my arm and leg muscles burn for about two hours after. Like I was surfing. Not on a kitchen stool.

I like knowing my physical limits. It helps me mentally cope with being a chronically ill woman. It can also help me when communicating with my doctors. In the past when I was asked how many steps can I walk up my answer was always "I don't know, I avoid them."

I'm sure the answers will change, but for now I know where I stand. What my body is capable of. I shudder to think of underestimating myself in any way. Avoiding things just because I think I can't do them.

Maybe tonight I'll dream of scuba diving?

Pretending to Be Normal

There are times where I just get so sick of my body and my illness that I have what I call a "normal burst." That's where I just pretend that I'm a normal, healthy person who can do anything they want. I resent my medications. I resent using mobility tools. And I hate that my body fatigues. So I just push and push and push till I completely gas out.

Today was a day like that. 

I had a lovely morning with my Mom and when I kissed her goodbye for the afternoon she said "Now go and rest." We had swam that morning (Well, I more stretched and floated) and that was good advice she gave me... But something in me said "NOPE! I'm going to GARDEN because I AM NORMAL!!!" It's like my inner brat breaks loose or something?!

So I did. 

I watered my garden and did some pruning and cleaning. I felt my body want to quit, but I pushed it. I pushed it when I knew I should just stop. 

Why? 

Because it felt so good to be out there doing exactly what I wanted to do for a change instead of what my body wanted me to do (which was what my Mama told me to do... go and rest.)

I often fantasize about the things my body used to be able to do. Snorkel, bike ride, hike, etc. I think that's super normal and I'm sure many disabled people do the same. Especially considering I haven't been disabled that long. It was just 19 months ago that I was snorkeling in Hawaii with my husband and work friends. No way could I do this today.

Sometimes pushing myself is worth it. 

I try not to push so hard that my muscles go into rhabdomyolysis. It has happened a few times in the past and I like to think I learned. Pushing myself helps me know my limits. If I don't go to that breaking point I won't know where it is. It also gives me a little taste of what it was a like to be my "normal" old self again.