Busy In My Blue Chair Fighting SPMS
The matter at hand: I am in the secondary-progressive stage of MS (SPMS). I no longer work. I no longer drive. I'm pretty much down to a taking a couple of steps and transferring - sometimes with assistance and sometimes without. I have limited use of my right hand and even more limited use of my left - fortunately, I'm right-handed. I tire very quickly. For instance, merely turning the volume up or down on the remote control can leave me tired for 10-15 minutes. Picking it up and getting it into position adds another 10-15 minutes, and if I have to reach for it...well, you get the picture.
What it might look like on the outside
Basically, I appear to be a sedentary woman, sitting day after day in her blue lift chair with the TV on, but muted, her walker to the right and TV tray to the left - commode nearby. Sometimes with Bailee, my very dear Chihuahua fur baby on my lap or resting on the right arm of said lift chair which is often in the reclined position, I might add. Some days appear 'good', some not so much, and others even worse.
What I really am
I am one busy woman. I'm in a daily fight - with my brain, my body, and my mind, battling silently to effectively manage and navigate through a journey that MS has 'graciously,' or more like maliciously, afforded me.
My days are not idle
My days, while sitting in that lift chair, are not idle, but rather spent fighting. Fighting with fatigue after the smallest activity that for one with MS can be quite a feat - refer to the aforementioned remote control example. Then there's the fight with the annoyance of jumping nerves and sensations of unseen creepy crawlies that you have the strong urge to try to scratch, but in moderation so you don't 'over' scratch in your quest for relief. There is fighting to withstand numbness, tingling, burning, aching pains that are intermittent on good days though lingering on the bad. And then there's being mindful about alternating between the reclined position in my chair in order to manage chronic bilateral foot edema.
The smallest tasks are draining
Try all of this while maintaining your composure with sometimes a chatty aide, paying attention to your child with lots to tell you, or visiting with company that you appreciate. Aside from all of that, simply thinking of the energy you're going to expend with a mere toileting trip or showering - a major chore. If you are going out, just dressing, getting out the door and in the car is just draining - and I LOVE a refreshing shower and especially an outing!
I'm still busy and active
While in my little blue chair, I'm busy writing articles, reading on my Kindle articles, stories and experiences like mine, staying abreast of current events, handling business by writing letters, making phone calls - anything I can do from my phone or my tablet or laptop.
Fighting my emotions to stay positive
While sitting in my blue chair, I am fighting emotions of becoming despondent about my circumstances and am constantly focusing on all that I am able to still do and, in spite of my challenges, all that I actually still do when I can do it. Some days, that's difficult, but let me say this...
It's not what it looks like: I am fighting
I recognize the matter at hand and what it might look like from the outside, but know that I am not 'just' sitting in my little blue chair. I am fighting and living because it is what it truly is.
Have you taken our 2023 In America Survey yet?