If you know me at all, from any part of my life be it work, family, socially from when I was a barfly, reader of this blog or even accidental Facebook friend that I accepted because I didn’t want to appear rude, you probably know all about how much I hate to be hot. Heat of any kind, but specifically the kind that happens in Pittsburgh starting in July and going through late September (and probably the kind that happens in early May to late June, too, if I’m being even a little bit honest).

Heat makes me super cranky. I hate to be hot. I hated to be hot long before I knew I had multiple sclerosis.

I hate to be hot anywhere that I am not either submerged in actual cool water or hiding in the dark with the AC cranked down to 64. I hate places that are hot most of the time, places that lack seasons. I hate being hot so much that I will openly rail at any suggestion that it might not be that hot, or that you might actually enjoy being hot (shut up already, I get it) or that I shouldn’t hate the heat so passionately because I live in Pittsburgh where it also gets ridiculously, insanely cold for what feels like a really long time and it will be cold again in no time so I should try to enjoy it while it lasts! I hate all of those supposed logical arguments against why I shouldn’t hate the hot weather so much, but that last one is the one I hate mostof all.

The simple reason I hate that argument is that I actually enjoy the winter months. Cold weather means cozy sweaters and scarves, cashmere wraps and awesome boots, a collection of coats most people would find excessive or obnoxious…I love the fall and winter months. Even when it gets too cold for comfort in the outside world because even pre-MS me loved a good reason not to leave the house. Inside. Cozy. Light some candles. Perfection. I loved me some winter.

Sometimes in the winter months, I’d crack a window in my bedroom at night because I really hated sleeping in a hot room. A slight chill in the air made me happy. I could add a layer! I mean, if I really needed layers because I usually felt very comfortable when slightly chilled. I’d often walk to my car without a coat when it was cold because I hated being hot once Igot into the car and I didn’t want to risk it. The mere idea that I might get over heated was enough for me to not wear the damn coat.

Once diagnosed with MS I realized there might be a good reason why I hated to be hot so much. Heat turns my limbs into jelly. I am so squid-like when it’s hot that my normally questionably operational legs don’t even try to operate as legs should. When it’s anywhere above 70 degrees, if there is even a whiff of humidity in the air, I feel like I can actually hear my legs laughing at me when I even consider going outside as if they know how likely it is that I’ll end up ass over teacups on the concrete should I attempt ambulation f any sort.

Until I got MS, I didn’t know why the heat made me feel so terrible but last winter I made a horrible discovery. It was super-duper cold last winter, after yet another relapse, when I first made the discovery that the extreme cold weather might not be my friend either. Extreme cold didn’t make me a squid, like the heat did. Extreme cold turns me into the Tin Manwho’s been left out in the rain. I get so stiff I have to use the old side leg swing to move in a forward motion. My legs get stiff like they are actual tree trunks and not made of flesh and bone. The cold turns me into creaky, rusty steel. It was after I made that discovery that I determined that I had about a ten-degree range wherein my body was physically optimal, somewhere between 45 and 55 degrees Fahrenheit.  That was about it. Not too cold to get all stiff but not too hot to turn into the human squid. This is not a reasonable range for personal comfort. I suppose that much is obvious.

In my post-Lemtrada recovery phase, this whole heat and cold sensitivity has gone even more haywire. It’s almost as if I’ve lost the ability to regulate my body temperature at all. I’m so cold one second that my teeth start chattering and my fingers and toes turn actually blue. I crank up the heat, I add layers (she, who doesn’t believe in layers!), I put on my furry-on-the-inside socks in a desperate attempt to warm up. Now that I have the power of my thermostat in my hand with my Nest app, I’d easily go from 69 to 75 degrees in minutes and still feel freezing.

I can almost see the eye rolls coming from all of those friends and acquaintenances who had to listen to me passionately curse the summer time. I can hear them taking glee in the mere idea of me feeling cold and knowing at least a tiny bit of the misery they feel all winter long. I can see my fellow cold lovers cursing me for selling them out. The fact that my thermostat is set on 64 all summer long doesn’t forgive the transgression of going above 70 in the winter time, let alone 75! I’m already voted out of the cold lovers club. I knew that would happen the minute I admitted that setting in writing.

It wouldn’t matter that it seemed to be the minute I finally felt warm again when I’d go sliding over the Falls in my wooden barrel full force once again and I’d be roasting hot. So hot that I’d feel the need to fling the blankets aside, pull off the layers and crank the thermostat back down to 67 or cooler and I’d feel like I could safely move my jelly-like limbs again. At least that’s what I do until I get cold. Again. I’m still out of their club. I know this.

This going from hot to cold and cold to hot goes on all day and all-night long. I’m never, ever comfortable anymore.

I know what you’re thinking. You’re thinking, “So, Beth. You may have a birthday coming up in a couple of weeks and you are kind of getting to be that age, you know the one (wink wink). Hell, you’re actually well past the age when your body heat might go a bit wonky. This is nothing more than your run of the mill hot flash! Get used to it. It will be over soon, old woman. Just hang on a little longer.”

And you would be right. I am staring 52 in the face like a deer in the headlights and I’m probably well past the expiration date on most of my hormones but this isn’t just flashes of extreme heat that plague me completely out of the blue – it’s also the constant threat of utter arctic chill. Like my fingers and toes that are already sort of numb start to look like blueberry popsicles and burn. Blueberry popsicles aren’t supposed to burn.

The weather as of late isn’t helping me acclimate to my constantly fluctuating body temperature. Last week we had days in a row of sub-zero temperatures and even lower wind chill readings thanks to the beloved weather phenomena we know as The Polar Vortex. I had my heat cranked to 75 on more days than I like to admit in writing for the world to see. I couldn’t get warm for love or money. No number of layers, fuzzy socks or fleecy blankets could make me feel warm. I’d lay in bed under a quilt, a down comforter and a third blanket while wearing flannel pajamas and three layers of t-shirt with a sweater on top, shivering. I felt like I was never going to be warm again.

This week the weather has suddenly reverted back to spring. It’s freezing cold in my house because the heat doesn’t kick on when it’s warm outside. And people, it was warm outside these past couple of days. Yesterday we hit 60 degrees, today was 62. The sun shining outside was mocking me for sitting in the house working and shivering while the world outside was celebrating May in February. I opened my front door so I could see the sun shining thinking maybe that sight alone would instantly render my fingers and toes less frosty. It didn’t work. I was desperate. I sat in front of my little portable elliptical machine and pedaled for 5 minutes. I didn’t feel hot, but I did feel tired so I had to stop after 5 minutes. Now what?

Well, I did something I haven’t done in a very long time, or ever really since I graduated to using a rollator. I dragged Clara my fancy Danish rollator out to my front porch, gingerly down the few steps to the sidewalk and I walked to the corner of my street and back. That’s a picture of me (kind of) doing exactly that above, to show you just how few steps it was that I walked sans a jacket of any kind. It was really that warm outside. I could hear my legs dragging on the pavement every couple of steps but I persevered (I am being overtly sarcastic, if that’s not coming through on the page here). I made it back to the house, up the few steps and inside the house on trembling legs.

I finally felt warm but I did not feel at all comfortable. That little bit of warming up and that tiny bit of exercise had my legs in the absolutely useless column for the rest of the day. That’s all it took! I’m writing this blog post right now while sitting in my giant green writing/working chair to buy myself time to somehow get these inanimate leg-like structures up the stairs to where the bed is. I don’t think I’d make it if I tried to go there just now. If I suddenly have to pee, I’m toast. Damp toast.

Sometimes when I get warm again something else kicks in, other kinds of discomfort completely unrelated to my personal body temperature.

Like I might suddenly have one of those crazy leg spasms where my legs shoot out ramrod straight in front of me while the muscles inside wriggle and twist in completely opposite directions that hurt so bad you think it might never stop. Or sometimes the cold makes my pain boil over until it’s a dull burn in my upper neck or lower back completely incongruent with the bone-deep chill I feel in every other cell of my body. Sometimes when the comforting heat comes back to ward off the horrible chill I start to feel dizzy and woozy like I better not stand up. Other times when the teeth start chattering again they cause a pain in my head like what I imagine a migraine must feel like though I’ve never actually had one of those.

It dawns on me that I may never feel actual comfort again.

Lying in bed used to be comfortable but I can’t lay about for too long because my muscles will spasm and I’m probably also freezing (or sweating) very shortly after getting almost comfortable in said bed. Sitting in a chair is comfortable because I have awesome furniture procured purely for its contribution to my personal pleasure but it isn’t comfortable for long because if I sit for too long my quadriceps start to feel like they’ve ceased to exist and my legs are therefore unable to support me when I try to get up because I can’t actually feel them for a minute or ten. I can’t walk very far or my legs just start dragging on the ground making me fear walking less than half a city block to the stop sign at the end of my little street. I had to sit at the stove while making my delicious dinner of grass-fed filet and sautéed mushrooms because the combination of weak legs and the onset of burning pain was more than I had in me.

I miss feeling comfortable. I want to feel comfortable again. Somehow. Some way. I would like to lay in bed without fear of cold, heat, pain, spasm or paralysis. I would like to walk to the stop sign at the end of my street without fear that I might not make it home again. I want to climb the steps to my bedroom without fear of rolling backward down the stairs again. I want to sit in a chair without being afraid of suddenly peeing my pants. Staying still isn’t safe. Moving around isn’t safe either. Numbness is both a feeling and a complete lack of feeling simultaneously. Comfort is just as frustrating because it suddenly feels like an unknown concept. The word itself looks like gibberish to me.

I’m going to try and accentuate the positive by recognizing a few non-comfort related things that came of this day. I pedaled for five straight minutes on my Cubii. I worked. I walked to the stop sign and back without a coat in February. I made myself a delicious steak and mushrooms for dinner. I am still able to form (mostly) comprehensible words in the correct order for getting this post written. All of this is more than I’ve been able to do in quite some time.

So, while I am completely and totally consumed by my lack of comfort in this moment, or in most of the past moments I’ve had since before infusion week this past November, I can still be grateful for what I was uncomfortably able to do today.

I can also be grateful that I can still make a ridiculously delicious steak for myself for dinner even if my body hurts the entire time I’m eating it. Check it out:

Thank the Universe I don’t still fear red meat! I laugh in the face of Listeria!

I don’t know, folks. I am still struggling between wishing to be miraculously better and knowing that this was never the way this was going to work out for me. This damn disease has been getting progressively worse (and more uncomfortable) from the get. It was as if the day my mysterious condition had a name its unrelenting nature was released on my world and the mere concept of comfort started to become a memory even before I realized it was happening.

Or maybe this particular level of discomfort has been going on for a bit too long. Whatever the case may be, I’m going to head up to my formerly comfortable bed and read a book until I fall asleep where I will be comfortable until the spasms start or the bladder starts to burn or the hip that I’m sleeping on starts to throb.

Tomorrow could be better than today and today was pretty good, considering. Maybe I’m finally getting comfortable with my discomfort?

Nah. But maybe someday I will.