Dealing with SMA Burnout

[anna]

I can totally relate! It’s very hard to maintain a balance. Just make sure the breaks you take aren’t too long because, in my case, some “escapes” have ended up with me neglecting my health.

[alyssa-silva]

Ugh yes I know what you mean. The balance is a very thin line, one I haven’t quite figured out yet.

[robin-c]

Alyssa, yes, I have been trying to resolve several health issues for over a year. It’s daunting and overwhelming. Unfortunately I can’t delegate this responsibility, but more than once I have said “I don’t want to Adult Today!”.

[alyssa-silva]

I’m sorry to hear you have been dealing with some health issues for a year. I’m in the same boat as you. I think we deserve a vacation!

[robin-c]

Alyssa, thanks. Yes, when I was younger I really looked forward to vacations. Hugs!

[adam]

Simple fact is there is no vay-cay from this. In fact going on “vacation” is more stressful than just staying in the holding pattern of everyday life.

I try make everyday a holiday; sleep late, drink too much, eat what I want, whatever – I aint getting any healthier anyway & life isn’t gonna improve as I age. Eating is difficult now & booze is ruined through a straw so what’s to lose?

[susana-m]

We’ve heard a lot about healthcare workers and their struggles with burnout but patient burnout is also a thing. Or, if it’s not yet recognized, it should be. I used to think it was just me, now I know it’s ever present in people with long term health issues. Especially progressive disorders.

You know what it feels like: dragging fatigue, resigned to test #57, another doctor who is going to confirm what you already know. Let’s not forget the energy it takes to be present, ask questions and keep some autonomy in the decision making process itself.

All of that is secondary to the shifting symptoms and changing landscape of SMA itself. That can be really challenging when your baseline strength drops, suddenly you can’t do a task anymore. It’s exhausting, both physically and emotionally.

F**k adulting.

When I get to this moment I try to remember a few simple strategies. Go outside. Get your cell and take a spin around the block. Research has shown just looking at a tree for 5 minutes lowers blood pressure. Vitamin D deficiency has been linked to depression, fatigue, muscle pain, weakness and stress fractures. Vit D also helps build calcium in your bones so that’s a win on a lot of levels.

Another strategy is becoming ultra present in the now. Instead of grieving for what’s already happened or what might happen in the future, I stop, look around my space to anchor in this place and focus on the task at hand. It’s like the ‘work vacation’ you mentioned in your article.

This is probably obvious but therapy can be tremendously helpful with the right counselor.

It’s important to cut ourselves some slack. It’s easy to find compassion for others but giving it to ourselves is like pulling teeth. (That’s not an SMA thing, it’s a human thing) These last years have been traumatic for everyone, it’s ok to have a bad day. Grab a cookie or some chocolate, turn off social media and watch a movie or go to a park.

This too shall pass.

[alyssa-silva]

Thank you for sharing this Susana. I couldn’t have said it better myself.

[adam]

Very well put, Susana.

[deann-r]

Sometimes I don’t know if I’m doing enough to ward off SMA. But if I did everything I’m supposed to it would take up such a big chunk of my life, and would it really make a difference? Like others have said I think you just have to find that balance. Easier said than done though.

[susana-m]

Warding off SMA? I’m intrigued. Would you share what that looks like for you?

For me it means weekly acupuncture, eliminating refined sugar, eating less meat and dairy, some gentle range of motion, trying not to do too much. Anything that is proactive gives the added bonus of feeling empowered to make choices that matter in your well being