Greetings from my Relapse and from inside the Ark.
See, I wished for rain. I was so sick and tired of being so hot and humid and blah, I did my own version of a rain dance (a rain wobble if you will) and set every ounce of my energy against influencing local weather patterns. I did this rain wobble over and over again. And rain it did. It rained so hard that it didn’t stop for more than 27 hours. It poured buckets from the sky until rivers of rain water flowed through my basement. It finally stopped a few hours ago.
I finished my last dose of Prednisone on Saturday evening and was mentally preparing for the slow decline back into pain and dizziness that would inevitably set in over the course of the next few days or maybe weeks, if I got a little lucky.
I liked those couple of days of not feeling dizzy and sick. I slept in a lot without worrying about being in pain from lack of movement. I really used to love sleeping in before it became the thing that would cripple me for an entire day as my body stiffened up into new forms of immobile sculpture. On the first day of the rain, I lay in bed all damn day happy as a clam. Not pain anywhere in my body. No dizziness when I’d get up. It felt like heaven.
Then I woke up yesterday and everything was weird again.
Did you ever get the feeling that your body is quasi-paralyzed? Like you know your legs and feet are there, they are tingling slightly in a not irritating but also not pleasant way, but you also can’t feel them much. It takes great effort to make them move even a little bit. When my feet hit the floor I instantly grabbed my bedside table for stability for the first time in three days. Things were not right. This is where the voice starts in your head…
…you slept too long and now your body is broken.
…you wasted the steroids by not going out and doing fabulous, social things so you’re being punished.
…if you got up early and tried to walk around more this weird paralysis thing probably wouldn’t have happened.
…this is totally your own fault.
…who takes three days of horse-doses of Prednisone and ends up worse? You did something to cause this. Why can’t you even do the most basic things right?
…it’s mind over matter, Bethie, tell yourself you can walk right and you will.
…just try harder. Don’t stay in bed even though being out of bed makes you fear for your life…JUST TRY HARDER.
Then you finally message your friends from the place of stone-cold panic that you’ve been trying to avoid for the last two very biblically rainy days. You message your friends and admit that you’re scared to death because your body feels like some kind of weird inanimate object and you really can’t move around that well. You tell them how afraid you are but how you know it has to be your fault. You must have done something wrong to deserve this weird tingly bodily nothing feeling you can’t seem to shake. I had to! I just finished the Prednisone! How can this even happen?
They remind you that you have a disease. That you’re not in control, not in control over any of it not especially when in the middle of a relapse. You have to listen to your buzzing, numb-but-tingly broken body and do what it is telling you to do. You have to stop beating yourself up over it and believe it will eventually get better even when you can’t feel your left hand and your legs have become purely ornamental.
When you ask out of sheer desperation how you are supposed to function when shit like this just keeps coming out of the clear blue sky, they say really wise things, that you should know by now but you really need them to remind you at times like these…
I mean, who should be writing the damn MS blog, me or the amazingly wise, inspirational and totally on point speaker of that fundamental truth that is my friend Adrienne? I couldn’t keep this simple wisdom to myself any longer. I had to share her with the world!
So this is where I go to bed again to read myself to sleep, trying to quiet the voice that keeps telling me this whole shit few days will never end and this might be my life now.
I will eventually close my eyes and fall asleep hoping that when I open my eyes again I won’t grab for the bedside table before I take a step. Maybe my numb legs will go away along with this crazy insane torrential rain! Tomorrow could be the day I get out of my pajamas. But if it’s not?
We do what we can and fuck the rest.
Betsy Riley
September 11, 2018 6:11 pmI like the platinum hair. Watch out, more rain is coming from the hurricane.
bethnigro0212@gmail.com
September 11, 2018 8:41 pmThanks for the heads up, Betsy! I am notorious easily bored with the color of my own hair but the platinum is definitely my favorite. I always end up going back. 😉
Positively Alyssa
September 13, 2018 5:27 pmFirst I like the way your friend Adrienne thinks! I am kind of on board with her. Your last statement was incredibly powerful Beth, “We do what we can and fuck the rest” I have started thinking like that way more. People will never fully understand what we are forced to live with and I really wouldn’t wish it on anyone, well I might wish what we deal with on one man that lives in a big white house! I hope that didn’t offend you, but he is the only one I wish hard times on! I hope you are feeling okay today. I must tell you, I find you to be incredibly encouraging and inspiring. You are so much stronger than many others and I just hope you see that!!