Tips on How to Feel Even Worse From MS: A Satire
A slow-growing trend towards symptom relief among the MS community has been picking up more momentum lately, and frankly, it’s got me worried.
Of course there are pockets of MS patients that dream of a life without pain, blindness, and immobility. If that floats their boat, all power to them. But for those of us who enjoy suffering and seek to intensify the experience, there just isn’t any professional, peer-reviewed information out there about how to achieve a higher level of misery. People complain to me a lot about that very point, lapsing into tearful, head-wagging silence at the Hippocratic Oath to “do no harm.” Honestly, some doctors take that to extremes. What’s a masochist to do?
We old-timers learned long ago that patients get educated about MS and its treatments from other patients. Doctors simply are either too busy or unwilling to fill in the blanks for us. So newbies seek out validation and support from online communities where someone more experienced can give them some tender loving torture. As we all know, a little sadism goes a long way. It helps tremendously to know we’re not alone in detesting comfort in any form.
But isolated is what I’ve been feeling more of as alternative forms of relief make it into the news. Cannabis is the latest thing my MS friends have been using to separate themselves from their bodily sensations—and they want me to use it, too. My protestations fall on deaf ears. I try to tell them what ecstasy they could experience if they would just stop relaxing their stiff muscles and relieving their pain!
Even as a child I embraced suffering. Reveled in it! I became clumsy and tripped over my toes starting around age 12. Sometimes I’d pitch forward on a gravel road and bloody my face on the sharp stones. The pain lingered and I walked home, high as a kite on my misery.
Years later, in the diagnostic phase of my wonderful MS journey, I had an EMG. Most of you complain about the needles digging into your muscles, but this was one of my favorite procedures. It was deliciously excruciating. I wondered if there were other tests this painful. Really, I was quite excited. Much to my delight, I had my first lumbar puncture. It was horrible—I was in heaven! The needle went in six times at the most diabolically torturous angles, after which I developed a headache for a week. I was offered a blood patch to stop the CSF leakage. Naturally I refused. When the headache went away I slipped into a bit of a depression. I asked my doctor for another LP but she said it wasn’t necessary. I’m sad to say I haven’t experienced that much pain since.
Right from the start, from the time my legs collapsed and I broke my arm on the concrete to the worst mother of all lumbar punctures, I knew I was different from other people with MS. If my story sounds familiar, don’t be ashamed. You aren’t alone. If you’re taking your meds as prescribed and feeling no pain because of peer pressure, you’re probably numbed by depression and avoiding social contact. But take heart. With a little courage, you can gain confidence again. Here are some suggestions to get you back on track. You’ll be sleeping on that bed of nails again in no time flat.
Get maximum pleasure from muscle spasticity. If your leg goes into a full cramp and your toes contort painfully, fully extend your feet like a ballerina en pointe. It will make the pain worse and your toes will twist and bend into grotesque shapes. Painful and amusing! One of my favorites.
Go into full burn when summer temps hit the high digits. It is August, 12 noon. The air temperature is already 95 and rising with 88% humidity. If you step outside, your vision will blur, you won’t be able to lift your feet off the ground, and your legs so dramatically weaken that you can barely drag yourself inside the house. Perfect? Not yet—you can heighten the misery with this simple trick. Before stepping out of the A/C and into the noon inferno, drape yourself with plastic wrap, put on a wool sweater and socks, then suit up in a winter coat, scarf and boots. If you’re lucky, you’ll stay conscious long enough to gasp deliciously for a few breaths before passing out. Hotcha!
Skip the pain meds. We are so fortunate to have neuropathic pain as a feature of multiple sclerosis. Why rob yourself of the many strange manifestations? Blow torch burning pain, electric shock pain, creepy-crawly stuff, itching, bruise-like pain, deep aching, sharp squeezing pain from the MS hug, and the list goes on. Who needs LSD when MS pain can make you hear colors and see sounds—like your own voice screaming in agony?
For the pain-lovers out there, this is a valentine to you all. I hope you feel a little less alone. I wish you agony, torment, and the bliss one only gets from grievous chaos.
How do you feel before getting an MRI done?