The hell month
I’m a month into this, my longest exacerbation since being diagnosed with multiple sclerosis in September 2010. I’ve had flare-ups, but they’ve all been quickly extinguished by either starting a round of steroids or because the disease-modifying therapy was working.
I don’t know if I explain just how life-rending these tend to be without sounding melodramatic. Every day is a fight to survive the physical onslaught and stave off a mental breakdown.
In the first week, there’s the oh-shit feeling that it’s back and you hope against hope that it’s all a figment of an anxious, overworked imagination. Then there’s the tingling, the prickly pain of a thousand needles, and the graceless limbs that go where they want and do whatever they feel like, including stabbing you in the mouth with a fork, forgetting what textures feel like, and hitting the bed, the dresser, door jambs, your face, your husband’s face, everything.
Week 2, and you start to get a handle on things a little bit, adjusting your life to accommodate this unwelcome visitor. But you soon realize it’s just getting more comfortable in your space, taking over your brain and spinal cord and hands (why won’t they just work?) and then soon arm and torso and leg and more torso again. You tell yourself DON’T PANIC, but when was the last time that worked, if ever? And doctors, well, they can’t do much, remember? There is no cure, silly. Only less-than-surefire therapies. Family and friends help but are also helpless. They have to sit by and watch you go through hell and know that they can’t pull you out of it, only make it a little more tolerable.
By the third week, you are so dazed and cranky and needy and fatigued that all you want to do is sleep (which you can’t, because of the insomnia) and rest (which doesn’t seem to improve circumstances at all). The body is still rebelling, adding night sweats, blinding headaches, swollen face and hands to an ever-growing symphony of maladies. And of course, you still try to work 50-hour weeks and keep the house clean and go for walks and function like a normal person BUT REALLY, who are you fooling? You can’t even zip up your pants or hold a spoon or walk 50 feet without needing to sit.
Week 4 (Are you still with me here? Congrats on that — it’s almost over.) The second and third treatments don’t work. You feel like you’ve lost the battle of wills and just want to give up, whatever that means. You don’t think you’ll ever be OK again. You forget what a good day was like. But you put on a brave face, go out into the world, and try to make the best of it, hoping that mind trumps matter, even though in your bones your know that everything is broken and ABSOLUTELY NOTHING changes that fact except maybe time. And then there is the nagging fear that this is permanent, or that once you survive this one, the next wave will knock you down for good because you just aren’t strong enough to endure this.
My intent is not to scare or seek pity when I write about how MS is winning right now. I hope that these posts offer others, and me when I look back at them, a glimpse at what happens when MS does take a turn for the worse. This is about processing loss, grief and maybe, ultimately, acceptance.
Thanks to all who have stuck with me this far.
Filed under: Multiple sclerosis, Struggles | 7 Comments