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.

Then I slipped off the mountain

I haven't written in a long time, which isn't to say I haven't been thinking about it. I have been thinking about a lot of things as I slowly and desperately try not to slip too far down this mountain I've been climbing.

Having FSHD is such a long and twisted journey. In fact I've come back to this draft in 2022, realizing I started it in 2018.

Time passed quickly during covid and it's a good reminder of how quickly you can go from stable to not. It always feels like your muscles are progressing faster than you think. If someone had asked about how long my fast progression has been, I would have said 2 years. But, clearly it's been more than that.

One FSHD researcher describes the progression of FSHD like a rope that's being cut thread by thread. The thing people don't realize, is that with every thread that's left, you consider yourself still mobile. It's that last thread. When that last thread gets cut, that's when you feel like it happens fast. You don't feel all the other threads that are being cut. It is the difference between being able to do something and not. No one likes, 'not'.

In the last five years, I've gone from walking with a walker when needed, to being in a wheelchair part-time and not being able to walk without assistance. 

It might have taken 50 years to get here, but it doesn't feel like it.

I remember the look my friend Ann gave me when we talked about FSHD. When I met her, she was already late in her progression and in a wheelchair. This of course does not in any way describe her spirit which was very robust. I was at the beginning of my diagnosis and journey into FSHD. 

Like many people who are diagnosed in their twenties and have mild symptoms, we think we can beat it. We think we are going to be the ones with the mild progression who can fight it through exercise, supplements, naturopathic treatments or anything new that shows promise. Ann looked at me in a way that was knowing, but she wouldn't let on. No one wants to break anyone's spirit or bruise anyone's hope in any way. But she knew how the journey would go, because she had already been there.

I'm sure she would be very optimistic by the research and investment that has been made toward a cure for FSHD. We have come such a long way from where we were 30 years ago when I started my journey.

Until that time comes, I will continue with whatever comes up that I am still able to do (like yoga, meditation and getting out as much as possible) while having the humility that is on me now. This part of the journey is all about keeping the spirit whole. It is sometimes the most difficult part when having a progressive degenerative disease involves being in a perpetual state of mourning.

It's a lesson in managing expectations and the ability to adapt. It's a lesson in learning how much is out of your control. My new mantra is 'live.learn.accept.adapt.repeat.' I'm still in the game, even if it's on the sidelines. I'm still moving, even though it's slower. I'm still happy, even though I am sad sometimes. I'm still looking for new passions, even though they are in unexpected places.

Inhale courage and exhale fear. Remember,

'live.learn.accept.adapt.repeat.'

Until next time... and there will be a next time. 

 

Love and FSH Muscular Dystrophy

So this is an appropriate day to post something on love and FSH.

Love and relationships are hot topics on FSHD online groups and chats.  I think we all feel having FSHD is a guaranteed bad luck charm on love.  I  know I have used it as a reason for failed relationships and not following my marriage time line. I recently realized it's not always the FSHD.  It's just the way love goes.

I read a wonderful article from Kristin Duquette on love and being disabled (http://www.mobilewomen.org/2015/02/im-disabled-20-something-and-believe-in.html?m=1) We have as much love to give as anyone else.  But we often forget we are worthy of the same love.

Not sure if it is my personality or the disease that made me feel unworthy of being loved.  I think those with disabilities feel like they are not whole,  including their hearts.  Which of course couldn't be further from the truth.

It's another journey we face and God be with those brave enough to stand by those of us who take awhile to figure it out.

On this Valentine's weekend I got engaged. It is still sinking in. It's becoming apparent that being loved is as much about loving as letting yourself be loved. 

I find it overwhelming.

Not just the love from the brave soul who signed up for the FSHD adventure with me.  But,  the honest love from those people in my life who I have shared this news with.  In a world so jaded, cynical and crazy busy,  I feel I very real love and happiness channelled to me.

I'm trying to take it all in.  It's scary but I find I am enjoying feeling 'young and in love'.  It's nice to have that feeling of love without the memory of heartbreak and pain.  It's nice to not worry about how the FSHD might impact the relationship.  It's nice to just enjoy the moment and let it all in.

On this Valentine's Day I wish you all (especially my FSHD champions) a world of love from all those around you and more importantly,  the strength to allow yourself to be loved.

The Run In

Last weekend, I bumped into my ex at a party for the daughter of a mutual friend. I hadn't seen him "face to FSH" in a couple of years.

He knew about my FSH when we were dating and was the relationship in my life when I was in the "should I risk passing on FSH to my kids? Should I have kids?"

At the time, I hadn't yet experienced the depths of FSH progression. Even though we all know it's a progressive condition and everyone tells us it's going to get worse so prepare yourself, I still thought I could "will" it away. Mind over matter...pray... have faith... miracles happen... this is as bad as it gets... All good sentiments. But, FSH is totally on it's own agenda. (Reminds me of the saying "if you want to make God laugh, make a plan").

He was of the view it would be selfish to have a child who could suffer because of my decision. I wanted children so much. It was one of the few things I knew I wanted from as early as I can remember. I had a big extended family so I wanted at least five kids.

But, God had a different plan.

We spent a lot of time catching up on each other's lives. He asked about my FSH of course, and how it was progressing, what I was doing to deal with it. Given I had my walker with me, it was hard to avoid the elephant in the room!

In the years that followed our breakup, and sidelined plans of marriage and kids, I realized we weren't so different.

We both had good jobs, our own homes and our own challenges and successes. We both got married to other people we loved. He had his two and a half year old at the party and I had my stepson, niece and nephew there, so we both had the family we craved and I had as much fun and joy with my kids as he did with his. Probably more because I got to sugar mine up and send them back to their other homes!

In the end, it reminded me that things may not work out the way you plan, but they will always work out in the end.