Can too much good be bad and too much bad be good

FSHD can often be a guessing game. Particularly a couple decades ago when research hadn't yet advanced. Now we have more information, more real stories, more research and more possibility.

But with new knowledge comes new questions. 

There is a continuum and as the condition progresses you change your place on the continuum. But often, the advice doesn't change and it should.

As you can tell from previous blog posts there is a greater belief an individual can change the outcome of the disease themselves. Optism, confidence and a bit of bravado creates a combination that drives the individual to feel like they have the secret. The can change the game.

Usually this includes supplements, exercise, holistic approaches, Ayurveda, chinese medicine, stem cell treatment. Anything that offers a glimmer of hope, we open our wallets, focus and channel our energy and ambition to work on stopping this monster.

Outside of the fact in can drain your wallet, it gives you something to do and puts some control in your hands.

But it's already written, most of it is written. While exercise, nutrition and many of these approaches can help your overall health you have no idea what the long term effects will be. This is something ever present when you hit the realization you've done everything in earnest and the monster is still at work.

At this point, you wonder if continuing exercise, supplements and everything else is really causing more damage. Not only to the body but to the mind. Crushing hope is one of the most damaging things.

I'm at this point. I've lost the ability to do simple tasks. And other 'easy' tasks feel like climbing a mountain. By this point, I'm in tune with my body. Getting out of bed uses all my weak muscles and I need ligaments and tendons and joints to work extra hard. It feels more harmful than helpful. Some researchers agree. There isn't enough research to make it definitive.

I'm moving more into preservation of the physical body and nurturing the spirit. More time in meditation and prayer to keep my stress low and less guilt about not doing a regular workout routine. I'm keeping it to range of motion stretching with active assist.

The Law of Inches

Like many people with unique lived experiences, I volunteer much of my time telling others about my perspective around accessibility and disability.

I have had the pleasure of meeting the most interesting people who also share their stories. Like any equity group, no one opinion represents the group.

In one discussion, a visually impaired man told me how those who are blind and use a white came or guide dog follow routes from memory. So when something moves, like detours during construction or menu board on a sidewalk, it completely disorients them. 

Makes sense. If you're going by memory, counting steps or guiding by surface. The things non-blind people wouldn't consider.

It's similar for people with FSHD as we progress in our disease. Although I think it makes less sense to non-FSHers because an inch literally can make the difference between completing a task or not.

There's an assymetry to the disease so muscles weaken in different places at different times at different extremes. It often feels like walking on marbles or on a tight rope. One inch one way or another and that muscle group collapses.

It's the same with furniture, clothes, dishes and everything else in daily life.

I know some who use masking tape to mark off where everything needs to be, how wheels on a wheelchair needs to line up. Her whole house is marked up with lines.

It adds a whole other level of constraint. Not only for the person needing everything to be just so. But, for the people around them. 

I know it's hard when you are caring for someone with FSHD. Their inner strength, resilience and problem solving don't align to what might look like OCD or just being too demanding.

I hope you, as someone who is around someone with FSHD, will fire up your empathy and patience. 

Trust that the Law of Inches is about independence and freedom.

Finding inspiration in the most unexpected place.... my blog!?

Well if that just doesn't beat everything. 

After a wonderful catch up lunch with a friend who shared his blog with me, I was reminded about this old thing! 

Clearly, I've been neglectful of late. It's not due to lack of events or epiphanies. Just mostly a lot of navel gazing in between trying to live instead of just surviving.

Going through my past posts, I remembered what a comfort writing was. How much I loved being 'in the zone' and letting my thoughts, emotions and beliefs just flow cool breeze on a hot day.

Lately, I feel more like I've been in a storm. Thoughts and emotions just whipping around like leaves, broken branches and patio furniture. The rain pelting down every which way feeling like little sparks on your frozen skin, thunder like god is trying to get you to understand something crucial and the sharp veins of ightening to remind you of a power beyond you. And, when it's over,  there's a feeling of rebirth in the calm and hope when the sun takes the place of the dark clouds.

Then I remembered: I love storms.

I don't like long posts. So stay tuned for a few more posts on the more stormy parts of my FSHD journey.

I will leave you with one bit of advice : start a journal. 

Record it, write it or film it. Just do it. You have a great story to tell, even if you think you don't. If you have a journal, take time to go back and read it. I had myself in tears reading about some of my own stories and it reminded me of how much I've been through. It made me grateful but also made me realize how strong I was during difficult times and that I could I be strong again. 

The bear on the mountain

https://vm.tiktok.com/ZMjBWPEEg/

I saw this video and thought it's a perfect illustration of my journey with FSHD.

We try so many paths...get close..slip... follow in someone else's footsteps...slip... but resilience, patience, perseverance and having people stand by you wins in the end.