Little Pleasures

Little pleasures pack a big punch and mean a lot to me.

I used to find pleasure in good grades, a helpful session with a client, a big vacation... big moments. Sure little moments were nice too, but they were often overshadowed by bigger expectations.

One of the gifts I now have is that ability to find pure bliss in the smallest thing. A perfect dandelion on a walk. Free plants found to nurture back to health. A morning cuddle with my man. Petting my soft dog. All of these make me feel as happy as I felt eating seafood in Dublin Ireland. 

But it's more than that. These series of small moments weave together to form the tapestry of my happy life. They feel like little shooting stars in the night sky bringing a surprise of pleasure to my day. I feel fortunate not just to have them, but to see them. They were always there, but often I was too focused on the bigger joys to really soak them in. Staring so hard at the planets if you will that I missed the magic of the stars.

When I learned to relax my tight grip on expectations, my future and even the day, I started to enjoy my treasures even more. Sinking into my soft bed to rest. Snuggling with my stuffed shark. The warm water as I take a long shower. I'm incredibly lucky to have too many of these moments to count. 

All the feels

Oooooh chronic illness. You really know how to kick a girl in the butt, don't you? It has been a while since I posted because... you know... life and spoon sucking and stuff. Working 40hrs a week while struggling with my body pretty much takes 100% of my efforts daily. I'm constantly scared that I won't be able to work in the near future, but I tell myself that the only thing that would make that happen is if my voice were to be affected. Pretty much everything else I can work around. For instance, I just asked my employer for a voice to text software that will work with the programs we use.

I saw this taped to a bookshelf at a thrift store. I love little surprises like this!

I'm meeting my new neurologist this Tuesday and my husband can't come with me. I have to be a big, brave dog all on my own. I've got this! The new person is supposed to specialize in Metabolic Myopathy, so I'm hopeful. My old neurologist will also be there, so that will be helpful to have that support too.

Curious about my current symptoms? I know you are!!!

June 2019 Current Symptoms:

• STILL can't have an orgasm (that really sucks)
• Muscles shake after short burst of high intensity use
• Muscle cramps and spasms randomly everywhere
• Loss of muscle strength and energy through the day
• Feet go into tip toe frequently when seated
• Right lower eyelid spasm/twitch frequently
• Pain in arches of feet unrelated to activity
• Ptosis of both eyelids (right is worse)
• Increase in asthma sx (4 nebulizer treatments this year and 3 rounds of Prednisone)
• Occasional dry mouth
• Occasional choking
• Occasional headaches (from the COQ10?)
• Occasional constipation unrelated to food
• Occasional delay of urination (muscles won't relax)

Right now I'm on 2,800mg of COQ10 to try and help my Metabolic Myopathy (caused by a gene mutation.) Reading other people's experiences I feel fortunate to have been diagnosed so quickly. It didn't feel quick to me at the time, but for some people it takes years and years. 

Currently I'm trying to find other people with a COQ6 mutation who have Metabolic Myopathy. I've found one who I think does, but they're in India and English is a bit hard for them. I found another 5 who have very similar conditions that come super close and include COQ10 Deficiency. Of those five all are in a wheelchair at least as much as I am, if not more. Some have a breathing tube and feeding tube. That's a bit scary.

I'm glad I live in a time where I can hop online and get information and try to find other people on such a rare condition. In the meantime I have my husband and my family to share my feelings with and that's also very helpful. 

One good day after another

My "Mito Cocktail" has been helping my energy and muscle weakness in major ways. First came a huge increase in my energy levels. As anyone with a chronic disease/illness knows fatigue is a crippling part of it. Sometimes the worst part. Rest never revives you and you're just always running on zero spoons. So to feel energetic, even if my body disagreed was fantastic.

Next came an improvement in my muscles. I'm not "back to where I was" last year, but I think a big part of that could just be my loss of tone and strength from having to sit so much.

Shopping with just a cart. What a joy!

I see my neurologist April 2nd and have a slew of questions for him. I know the mitochondrial disease is "un-treatable" but I don't know if that means my symptoms will get worse over time, or if we halted the progression with the medications? Should I expect this relief to be short lived? Could I regress back at any time? Or is this my new normal as long as I keep up with the meds?

Having a chronic illness has taught me a lot about living in the moment and doing what you can for that day. I feel like I appreciate things more and I'm much less fearful. I really do make the most of each day, and that feels like a wonderful gift.

For example, I'm a "rubenesque" woman. I've never worn a bikini my whole adult life, but I've always wanted to. In the past I've told myself "I'm too fat. I couldn't 'pull it off.' Maybe when I lose weight I'll think about it." But guess what I got last week? Yup, a hot a$$ bikini. At 46 years old and being a size 22 (US size) I bought a fricken two piece. And not the blousy tops with super high pants kind that look like a one piece. I bought a hot push up underwire bra and low slung bottoms bikini. And I feel like a Goddess in it (and my husband agrees that I look fantastic.)

I mean seriously, life is way to short and precious to second guess, judge, hold a grudge or doubt yourself. If you want something bad enough, just make it happen! But enjoy the ride. I'm enjoying my ride regardless of what my body can or cannot do in any given moment. And I'm grateful for what I have while I have it.