Anxiety is a very common disorder, affecting about 20% of the Canadian population according to a 2020 study. Prior to ALS I didn’t think too much about anxiety; it didn’t affect me. Sure, I got nervous about some things or worried about others, but it was never something that took over. Having ALS has made anxiety a real issue for me.
I found this graphic. I had no idea that anxiety could affect so many things. I have definitely had an issue keeping motivated. I guess my excuse for taking so long to get this post written lol.
Throughout my journey with ALS, the factors that have contributed to my anxiety have changed. In the initial stages I was consumed with thoughts of ‘what comes next?’ and ‘I don’t want to die’. As the disease progressed there were new worries…being afraid to fall when my legs got weaker and my balance got worse, scared of choking when my swallowing became impaired and afraid of how I would communicate when I could no longer speak. I eventually decided to quit walking and eating food by mouth because of how much fear they elicited. I had some scary and painful falls and choking episodes. So while I obviously miss walking and eating, I don’t miss the anxiety surrounding them. Thankfully I have learned to communicate through a tablet and head mouse set up. It honestly works better than I could have imagined.
There are several anxiety producing situations that have been an issue for awhile now, and others that are relatively new. I absolutely panic when I get too hot, my hands are covered or I am left alone for too long when I don’t have my tablet. We were heading to the hospital this week and the van had a dead battery. My dad went to get his truck, Cory went to the shed to get jumper cables and I was in the van. It was a rainy, cool day, but it didn’t matter, I instantly got hot and started feeling dizzy and short of breath. It didn’t matter that I knew they would be right back, it was knowing that I couldn’t get out if I wanted to, that fuelled the panic. I also worry daily about making it to the washroom on time (challenging when you use a lift), choking on secretions and the fear of the power going off at night while I have my breathing machine on.
I try to think rationally and attempt to calm myself down when panic sets in, but I have come to realize that nothing about anxiety is rational. I empathize with anyone who is crippled by anxiety and for those already battling ALS, it is like the proverbial icing on the cake.
Thanks for reading…I will aim to write sooner next time. 😉
Leanne xo
Awesome post honey. Thank you for sharing! Love you.
Love this post. Anxiety is crippling. Sometimes there isn’t a reason for it, sometimes there is. Either way, I get it ❤️. People don’t get it. It’s not something that can just be ‘turned off’. Like you said, add ALS to this and there’s the ‘icing’.
You’re so strong Leanne. So inspiring.
Thank you for amazing insight……. A lot of people don’t understand. Thank you for sharing.
Such an interesting post. Anxiety is so debilitating. I think about you so often Leanne. Best job share ever! Love to you and your family 💜
Wow Leanne, thank you for your raw honesty and insight into an issue that plagues so many. We never know how our “normal” compares to another ones “normal” but perhaps by being open and honest we can help heal one another as love is above all else. Thank you and may God bless you as you have been so kind to bless us:).
Leanne, I totally relate to your experience with anxiety. All of it. Thank you for writing about anxiety so vividly. And thank you for making me feel less alone.
You are are an amazing woman Leanne! Thank you for being honest!!!
Beautifully written and a message that is so needed. So many people, including me, can relate. Love you and miss you so much!
I had reached a point where I stopped reading ALS blogs. So many seemed to me to focus on achievement, on how rich and full (and long!) their lives were despite ALS. Still walking 10 years post-diagnosis? Wow. But I found little to console or comfort me, no one with whom to commiserate with my failures and fears. I tried to find my “tribe”, those of us who lost a lot quickly despite all efforts to resist decline, who were often terrified, stumbling in ALS darkness.
Not sure what prompted me to open your “anxiety” post but I did and it was a gift of understanding and compassion. You wrote so candidly of the panic induced by your car experience. I couldn’t have imagined anyone else on the planet having and relating that reaction with such candor. (For me, a car incident was made worse by knowing I couldn’t roll down the windows or open the door.)
I feel today will be a little easier to get through thanks to your generosity in sharing not only your anxiety but your fears. It’s a big deal to have a friend-in-spirit who gets it. Thank you.
you are so brave to share this! praying for you <3
– Renee
good job mom lol love u lol
Leanne, this piece (as always) is so well written!
You have she’d a new light on anxiety, for me. Although anxiety isn’t rationale and most people can be in control of there thoughts, in that they can exit the anxiety invoking situation. But you cannot 😢
I think you are incredibly brave and courageous to write these ‘raw’ pieces and share your ALS journey.
Love you lots❤️
🙏 I love 💕 you Leanne and thank you for your braveness to show us your true and humble feelings. When I start to feel anxiety 😟 I think of you and believe me, I straighten out immediately. No one can imagine what your going through but Believe We are all Praying 🙏 for You and your Families. ✌️ Peace be with You each and every day Momma and God Bless All of You💕🙏
Bless you, Leanne. May God grant you peace in your heart. I am inspired by your posts. We all are on a journey to the Father; it seems so unfair that your journey is earlier than others. It must be bewildering and painfully sorrowful for you and your family. I pray for you.
Peace be with you.