“Thanks for inviting me to party/book club/dinner/lunch/event. I will try my best”
The response I usually get is “You have to come” or “Why wouldn’t you?”. I wonder if people really want the truth. About 7 years ago I would not miss a thing, ever. I do not nor have I never needed anything to loosen up, be ridiculous and have a blast. Not to say I did not partake in some things to enhance the experience. I just did not require it. So going out was always fun-pure fun. So why is it so hard to show up now?
A day in the life of someone living with relapsing MS and what it is like to show up……
After a sleepless nights sleep I lay there, usually on the couch it is the most comfortable. I lay there trying to assess the amount of pain and where it will be the worse. Maybe my back today which will make sitting up difficult and breathing impossible. Could be the throbbing cramps in my legs that will make it hard to swing them over to stand. Or possibly my feet and the pins and needles yet numbness making those first morning steps shear terror. Well time to get up make lunches, breakfast and get ready, here goes nothing.
Oh standing up from laying means I need to gain my balance first. I stumble and wince as I make my way to the bathroom then to the kitchen.Every step is hard and I fight to show the kids what pain I am in but they are not fooled. I grasp the walls because my brain is not telling my feet to move and I am looking like a drunken sailor. I have stumbled and almost fallen twice already. I heat my fishbellie (corn bag) and place the hot bag on my feet or leg or back. AHHHH that is perfect. Coffee, a little snack then 11 different pills and vitamins for breakfast. I say goodbye to my humans and then the nausea sets in from the meds. It is so bad I have to use some CBD to try to gain balance. With the pain that feels like my muscles are not there, the nausea and my “dead leg” I get on the treadmill. Yes the treadmill. If it is a good day I am a speed walker, a great day I run but this day I walk slow with no incline and grasping the rails. Why you ask? Because no exercise means stiff joints and even more pain. After thirty minutes I am done. Seven years ago I worked out for 2 hours a day, this wrecks me to think. The mental part of a chronic illness sometimes out weighs the physical.
I get ready for the day, shower and log on to work. Here is where I am lucky. I do not have to go to an office. My work is virtual, my meetings could be done in my pjs sometimes with no pants. Thank you Wisdo for that. It still is mentally exhausting, brain fog sets in as the day progresses. Some of my meds take effect by making uncontrollably tired at 2pm. I fight to stay awake but realize I must sleep for even 15 minutes. Kids arrive home and I can not move,my body is mad at me everything hurts especially my side radiating to my back. Hurts to sit, to stand, to be. I push myself to make dinner, kids clean up I can not stand another minute. But first I take those 11 pills again. The white one burns as it goes does no matter how much water I take and the after taste is like death. This is my reality.
I was invited to that “thing” and now I must decide can I handle it? Loud crowds can stress my thinking out. My eyesight is terrible so night driving can be difficult. Every single step is excruciating. If I sit the pressure from my back is so painful it burns, if I stand my pins and needles are worse. But maybe my mood will lift so I go. I take myself and go. I laugh with everyone, cracks some jokes and smile. Oh shit sorry I cannot have a glass of wine my medication says no alcohol. I get asked “may just one”, no even one can causes damage. I get the look, the don’t be so dramatic look. If only. I have been here only an hour but the pain in my back is intense and I can not walk.I am both sad and embarrassed. I say goodbye and people wonder why I am leaving. I get asked “Isn’t there something I could take?”, if there was a magic pill I would. Trust me showing up was hard walking out is harder. I feel like a failure. My body has failed me.
Some days I say no, I just can not. Some days I do not show up, Some days the cramps in my legs are crippling. Some days I can not move my hands.Some days I can not think and forming words is impossible. Some days walking is more work than I ever thoughts. Some days I just can not keep that tiara on.
But some days I just show up.
