Dealing with Changes in SMA

Spinal muscular atrophy has a host of challenges we all deal with at some stage. While all of our journeys with SMA are very different, I have always found that I can learn from other people's experiences.

Last October I developed a chest infection, and since then I have been grappling with the uncertainty and changes my body has been going through. We haven’t been able to clear my lungs back to baseline. But we will keep trying to achieve the best we can.

So I’m here to share some of the little nuggets of wisdom I’ve learned throughout this rollercoaster ride.

Firstly, don’t forget you know your body! For the first several months of this, no medical professional could hear my lungs crackling and I had good air entry. For all intents and purposes, my lungs didn’t seem to be infected. But how I felt combined with what I was coughing up told a different story.

Listen to your body

Listening to your body in that situation is so important. Do what you need to do in order to recover.

Talk to your doctors

Don’t be afraid to express yourself to medical professionals. Because if you don’t tell them what’s going on, it can be so much harder to fix things.

I think many people take this one for granted, especially those who don’t experience chronic illness. While SMA doesn’t automatically mean we live with chronic illness, a lot of us have experienced the dread when a medical professional isn’t understanding what we are saying.

Don’t be afraid to be the broken record. Doctors are like detectives sometimes, and hunting out symptoms to reach a diagnosis and plan really helps a lot. Different medical professionals might realize something the last person didn’t - so don’t give up hope!

Hold onto the people and things you love

And finally, try to hold on to the things you love during illness. Especially longer-term ones.

I know this can be like holding on to a block of ice without it melting. Practically impossible. But even finding small moments during the day to indulge in something which brings you joy can help beyond measure.

It doesn’t have to be grand or take a lot of effort either. It can be a food you really love to eat, or a chat with a friend. Or even popping on a movie you love during physiotherapy. The little things count for an awful lot of solace, so don’t leave them out of your routine altogether.

Keep little things in and it will make it all the easier.

Keep learning about your body

As for me, I’m still learning about what my lungs are doing and trying to define what recovery from this is going to look like for me.

But I’m determined to find joy and happiness in this bumpy patch too, and I know in time I will look back and laugh at things that happened during this period in my life. Just like I look back at the other times I was sick and laughed so hard, because the joy was still there to be had.

Most of all - you can still be you during a tough time. Let yourself shine!