Letting go

Part of adjusting to life with a disability is letting go of what you can no longer do. Mourning those things that your body just can't do anymore. For example, I can't do the kind of travel that my husband and I used to enjoy. No more hiking down cobble stairs into a secret well (like is pictured here in Sintra, Portugal). 

Yesterday I took a short bike ride to see how my body did. It has been a very long time since I tried to ride. I love my bike and it used to make me very happy. As I had feared my muscles did not like my bike. It's just too hard now to get it to go where I want and to balance. Time to mourn not being able to use my bike anymore and let it go.

My awesome bike and fantastic helmet two years ago.

A funny thing happened though when I got off my bike and in my wheelchair yesterday. I felt relief. I also had that excitement feeling I used to get from my bike, now just from my wheelchair. Like my bike it's a tool to take me around. I also get to feel the wind on my face, just like on my bike. But unlike my bike it's a tool that I CAN use. That's a good feeling. I'll be selling my bike and hopefully the next owner loves it as much as I did. 

But having a permanent disability doesn't mean I still can't do fun things. In fact there are loads of amazing things that I CAN still do!

I can eat fresh berries in the summertime!

I can still snorkel. Which is a life-changing experience. 

I can still swim! Or float. Depending on my energy level. Water is still my friend.

I can still travel and have adventures with my husband.
They're just different kinds of adventure now. 

I can still enjoy the beauty of nature.

I'm very lucky!

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. 

Friends are a Necessity

I am very much an introvert. I don't like big groups of people, lots of noise or parties. I like close friends I can trust and having fun in small groups (or better yet with one or two people.) BUT I also know that humans are social animals and that sometimes nothing is healthier for you than to spend time in a group. I've also been struggling with depression lately and craving a community of others who have similar physical and health issues.

I was fortunate to be directed to a Muscular Dystrophy "Mixed Diagnosis Group" in my area that meets monthly. My husband and I went to our first meeting in May.

At the group I saw people of all ages and all abilities and all but one were using a power mobility aide. It was so refreshing to be in a room full of people who shared the challenge of mobility together. Even though I had just met all these people I felt a sense of community with them. 

I'm not that great at holding onto friends. My husband has friends who have been in his life since grade school. I on the other hand seem to go through friends like ice cream. Enjoy them when we're together but don't really miss them that much when we part. Honestly most of the time I feel like I only really have the energy for my marriage, my job, my son and my dogs (and even then some days not enough for those things.) To add another relationship on top of those already precious to me feels about as realistic as me climbing Mt. Kilimanjaro. Aka: not at all.

But checking in once a month? I can do that. Meeting up with our friends once a month or so for dinner and drinks? I can do that. Not only can I do that, but I find it meaningful and fulfilling. I enjoy other people in my life and it helps me get out of my head and body when I do engage with others. Which in turn is good for my health. So yeah... it's worth the spoons.