Some Days I'm Frustrated, But Most Days I'm Okay
Last updated: February 2023
I find that I actually don't mind having multiple sclerosis. I mean, not to imply that I'm a fan - it was not an entry on my Christmas list or on my registry for something desired or needed. It's just that it's here and a part of my life now. I've surmised that it is what it is; the symptoms are what they are, and once you have found a way to manage them, you simply incorporate it all as a part of your life and move on.
Change happens with or without MS
Change happens and with MS, you may require a walker or wheelchair to help with mobility, a lift chair to make getting to your feet easier, or medications for symptom management. Without MS, you may have to change your purse to a larger one to carry a multitude of this and that, switch to a lower shoe heel because higher ones now hurt, meal prep to adhere to dietary goals and/or to save time, energy and money, or buy a smaller, more practical vehicle to save on gas or a larger one to accommodate your family. Life change is inevitable as is adversity and I accept that. This is why I've deduced that it's not MS, per se, but rather adapting to the repercussions of living with it that is most frustrating, disappointing, and woeful.
I want to get up, get dressed, go to my car, select a playlist for the ride, and drive myself off into the sunset... or even to the corner store. I miss operating the powerful device by my own command, feeling the steering wheel under my hand directing it to and fro, pedals relying on the press of my foot to direct it's 'stop' and 'go'. Some days, I'm frustrated. Some days, I'm disappointed. The worst days, I'm woeful. But most days, I'm okay.
Sundays were special to me when I was able to attend church regularly. Saturday evening, I'd prepare my Sunday school lesson for my class, select my attire then the following morning, and the children and I would head out. After church, I'd cook a nice 'Sunday meal' because Sundays just aren't Sundays with fast food! Some days, I'm frustrated. Some days, I'm disappointed. The worst days, I'm woeful. But most days, I'm okay.
Working in an office
I enjoyed working, and I loved my job: going into the office Monday through Friday, efficiently managing the office and implementing new and improved ways of doing so, mentoring and working with my student office staff as they worked towards their degrees, lunching with colleagues, and having purpose. Some days, I'm frustrated. Some days, I'm disappointed. The worst days, I'm woeful. But most days, I'm okay.
Doing what I want to do without relying on others
I have always known just how to care for me - and I loved doing so. From keeping my skin thoroughly moisturized all over to giving myself my own pedicures to all of those lady things that ladies like to do, this lady liked doing them. I miss wearing what I want to wear as opposed to opting for what's easiest for someone to help me get on, even having what I want for dinner and when to have it as opposed to someone else's choices. I miss going somewhere when I want to go as opposed to when or if someone else wants to. Some days, I'm frustrated. Some days, I'm disappointed. The worst days, I'm woeful. But most days, I'm okay.
Just okay is okay, too
I can live with MS, but the primary repercussion of adapting to a life with very little independence? Some days it frustrates me, some days I'm just disappointed, and the worst days, I'm woeful. But thankfully, most days, I'm okay, and I've learned that just okay is okay, too - sometimes.
Have any of the following helped to reduce your pain? Select all that apply.