I have been asked a few times recently what are some things that I miss the most. I try not to dwell on such things because, as you can imagine, it can be quite depressing. On the other hand, it gives me things to hope for when the day comes that a cure for ALS is a reality. When contemplating the question it occurred to me that I miss way too many things to list. I will focus on one of my greatest losses…my mornings.
I used to be a morning person; I loved so many things about it. Now people comment “you used to be such a morning person”. I was….and then ALS happened.
Before ALS I would stretch out in bed, moving from back to front, side to side, stretching my legs and moving my head on the pillow to find the cool spot. I very rarely had any sleep issues, I pretty much fell asleep as soon as my head hit the pillow and stayed asleep. I usually got up at 5:30 except for twice a week when I would get up at 4:45 so I could work out before getting ready for work. I always kept my robe on the floor beside my bed so as soon as I got up I could bundle up as I HATE being cold. I would head downstairs to put on the coffee (my main motivation for getting up) and then into the shower. Hot, like really hot water cascading down and waking me up, making me warm. Getting out of the shower and smelling the beautiful aroma of coffee filtering through the house. Savouring those first few sips, watching the sun start to rise, the promise of a new day. Breakfast next, favourite meal of the day. I could never get enough cereal. Dressing, styling hair, putting on makeup and getting the kids up and ready to go. I enjoyed the interaction and conversations with the kids in the car.
Now I sleep in my recliner chair because it offers enough support and doesn’t require someone to turn me every hour, which I needed in my bed. Usually twice during the night Cory gets up and moves my legs because they get really uncomfortable. My caregivers arrive around 7:30; when I hear the door open I cringe. Don’t get me wrong, I absolutely love my caregivers I just don’t want to get up. They give me my supplements and organize things for the morning, I do a few foot exercises/stretches and then it is time to get up. I dread this so much. No coffee to look forward to nor a hot shower. Oh how I miss coffee…it’s crazy really. I require a ceiling lift to get up out of the recliner and it’s so cold. I get my breakfast and a shot of espresso through my tube. It gets the job done but lacks enjoyment. Someone else washing me, dressing me, brushing my teeth. No more makeup or a variety of clothing choices. I wear loose fitting dresses because they are easy to get on. I can’t tell you how much I miss jeans. (sigh).
So can you see why mornings aren’t really at the top of my list anymore? So much to miss. That being said, the main motivation for my getting up and maintaining a routine is so that I don’t end up bedbound. I don’t want to lose all reason for living. I ensure this doesn’t happen by having things on my to do list each day, things as simple as online grocery shopping, banking or answering emails. Some mornings are worse than others and on those occasions I tell myself that if I just get up I can spend the whole day reading. LOL. Whatever it takes.
Until next time…
Leanne xo
Leanne, you’re on the top of my prayer list every day. xoxo
Thank you for sharing, Leanne. You are such a beautiful writer. It feels like a sacred gift that you share with us. Tomorrow, I will be more appreciative of all the morning things you are missing, and be sure to say an extra prayer for you. ❤️
I always find myself reading your words at a time when I most need to. You are a beautiful writer and an incredible human being Leanne. You make me realize the importance of being grateful and I marvel at your amazing way of looking at life. You should publish your words into a book, you really should. I always cry when I read your posts but I always smile and laugh too for you remind us all of the stuff that really matters and for that I feel blessed to know you💜
Leanne, I too am a morning person and everything you mentioned in your post resonated with me. I realize how much I enjoy my mornings, especially on weekends when my kids sleep in. It is such a gift that I don’t want to take for granted. I will think of you when I take my first sip of coffee and pray for God to make your morning a blessing in a new way like only He can do. “His mercies are new every morning. Great is His faithfulness.”
Lam 3:23
Leanne, your words are always an inspiration to us ….sometimes we take for granted “Our Mornings” as well as many Other things ….thank you for that… and God Bless you and keep you Strong.
Happy Easter to you and your family❤️❤️❤️❤️❤️❤️
Hi Leanne,
Thank you for sharing your experience. You are a fantastic writer. It’s very moving reading your day to day experiences with ALS. I’m so very sorry to hear that you are dealing with this illness. A good family friend of ours went through the illness a few years ago and it was very difficult for him.
Sending you prayers and happy thoughts.
Jerome Mens
Thank you for sharing this description of your mornings. I can totally relate! Mornings epitomize the lack of independence at this stage of ALS.
Leanne: it was Serendipity that I found you on Twitter and have not only come to know you but also several other wonderful people dealing with a miserable disease. I consider you my friend and, as my friend, I care very much about you and what you are thinking and feeling. I am thankful that you have allowed me to share even a little of your life. I just found this blog and am impressed by your writing. With my first cup of coffee each morning, you will forever be in my thought.