The forecast said it was going to be warm today and it was. The central air was welcome and set conservatively at 70, you hope that will be enough for these first hot days and nights but it’s hard to tell.
This is an old house and old houses are finicky. The first floor is comfortable. But the second floor where I set myself up to watch television before I sleep will be hot. Hotter than the thermostat says it is.
The dew point is 64. Everyone knows that a dew point of 64 is too humid for comfort especially when the day has gone above 80 degrees. But this is the first warmth of the season so you want to enjoy it or at least try not to hate it too much. Your feet are freezing cold and slightly purple. Maybe the heat will feel good for a change. It felt good sitting on the porch today after your shower. But it was hot today. Hot in the sun.
You can feel the temperature change the minute the stair lift reaches the landing rounding up toward the second floor. You don a tight white tank top and loose black jersey shorts for bed, grabbing a light blue three-quarter length t-shirt and toss it over your walker that sits bedside. Just in case.
The ceiling fan is blowing from above not that far from your head because you’re sitting up with your back straight against a bed cushion positioned against your wrought iron bed headboard. The cushion is designed just for this position of television watching in bed.
There’s a Dyson fan blowing from the right corner of the room about ten feet away. It’s set on 8 not 10. Ten feels too aggressive but 8 feels almost too weak but 9 is almost 10. There’s an old-school black metal Cinni-brand fan blowing from the right on a small table in front of the opened windows positioned just so, so it blows at your mid to upper body but not directly on your face. That might be too much. Or too little. The light blue three quarter sleeve shirt is sheer, almost see through but not. Often not warm enough in the winter. Not cool enough now. Just right for exactly thirty seconds. Maybe thirty three seconds. It’s hard to tell.
You’re sitting perfectly still watching some new sci-fi show on TNT. You try to ignore it but you start to feel warm.
Wait. See if it lasts. Feel the warmth begin to spread from your elbows where the light outer shirt is bunched. Try to ignore it. But that warmth won’t be ignored and getting too warm is disastrous if you need to try to get up to pee eventually and expect your legs to carry you to the bathroom. Try to focus on the show on the television not the warmth that’s spreading from your elbows up to your shoulder to your uncovered neck and head. Try to ignore the damp feeling at the back of your neck. Switch leg positions again. Wrestle the shirt wildly over your head but not all the way off. Leave it bunched up against your back. Try to ignore it.
Start to feel cool again. Relax. Enjoy the cool air. Your skin feels soft and smooth from today’s shower. Relax. Try to focus on the show again. The air comes from all three directions at different speeds. Skin starts to prick. Try to ignore it. Goosebumps form. Try to ignore them. Focus on the cool feelings and resist putting the shirt on again knowing you’re just going to be taking it off again in minutes. Your skin starts to feel like it’s moving. It’s cool to the touch. It starts to tingle. It doesn’t hurt it’s just not comfortable. Try to ignore it. Pretend it’s just a nice breeze. Put one arm in the outer shirt again but just one arm. Maybe that will be enough. Your skin is suddenly covered in tiny bumps rising uniformly across the surface of all exposed skin they felt perfectly smooth just moments ago. Focus on that one warm, covered arm. Maybe it’s enough. But it’s not.
Grab at the shirt to pull it over your head again slipping your left arm through the arm of the shirt. Sit up to pull it down over your back again. Enjoy the warmth. Feel the skin smooth out again. The goose flesh dissipates. The pricking on your skin stops. The air on your legs feels good again. You feel comfort. Until you don’t. A wave begins around your belly. It spreads out around your trunk and begins to spread down your arms. The shirt’s arms are only three quarters long. Try to resist wrestling the shirt off again. Feel the wave spreading to your bare legs feeling your feet start to swell again.
A different kind of pricking on your skin this time from the warmth. Close your eyes. Sit straight up and completely still. Feel the damp on your neck and under your arms and breasts start to spread. Grab at the neck of the shirt and pull it wildly over your head. Feel the air from all three fans spread over your bare skin again and the relief is palpable. Sitting forward reaching toward the air, feeling it flow over your bare skin again.
Breathe. You’re cool again. Sit back against the shirt that’s still bunched around your back – close your eyes again. Feel the air cooling your skin. The pricking begins again this time around your thighs. It spreads up your body until your nipples are hard again and the bumps begin to rise on your skin. Try to ignore it…
You know where this is going.
Over and over and over again. Until you give up and try to sleep. But to cover or not to cover? You know what will happen minutes after you pull the covers up around you. A new horizontal dance of covers on, covers off, left side roll to right side and back again. Over and over again.
Every. Single. Night. Either too cold. Or too warm.
Only briefest of minutes where you’re just right.
Mermaidy11
May 25, 2020 11:53 amI feel your pain
Oh yes can relate to all of your feelings, observations, worries for the future…
I’m stuck in a 4 bed house, got rid of the useless husband (there are worse things than being on your own right) and spent every penny I have ever earned on it
Now? I can barely manage …
Parents dead etc
Arg, but what has helped has been getting a tiny fold up scooter to zoom around the ground floor, one for first floor and a hoist in the back of the car for it? (Luggi) Wheelchairs use a lot of precious energy
I can’t live on nothing so have cashed in my pension (do u have one/ could you do that?)
And now I just focus on what I can do and take one mercurial day at a time
The book would be a blockbuster
I can see you writing a screenplay and film
You have a way with words and you talk so much heartbreaking and heartwarming sense
….Instead of banging on about dmds (newsflash they ain’t a cure ) and how you have just run a marathon regardless…
Don’t burn out just yet – we all NEED you to burn bright like the star you are
Hugs
Bethy
May 25, 2020 2:53 pmI wish I could explain to you how much I needed to read this right now. It’s a rough day. Weekends are hard aren’t they? Holidays. When the world is planning for all the fun. You also give me lots to think about and that is much appreciated. Sending you ♥️
Kristin Hardy
May 26, 2020 12:34 amActually, it sounds like what I went through with menopause (entered into 15 years early courtesy of high dose cytotoxin as in (failed) DMT for my PPMs). Wake up roasting, throw the covers off, fall back to sleep, wake up freezing. This may be MS but it’s worth checking with your primary care doctor see where you are at in the process and whether some form of hormone therapy might ease your path.
Bethy
May 28, 2020 11:16 pmAlas…it’s too radical and frequent. It’s a nerve thing me thinks. But I do get hot flashes on top of this hijinks and that’s even MORE awesome. 😂🤣
mermaidylady
May 28, 2020 3:32 pmWhat you need is to give yourself a freakin break Bethy❤️
youve busted a gut to be as well as you can be, and it ain’t over yet …. you are working still working very hard to improve, that is commendable and that hard work will pay off you know ? Every time you raise your heart beat you are stimulating that immune system and sending those white blood cells zooming round – it’s all good
You are building strength, resilience and new neural pathways baby
And one day soon u will take a massive leap forwards in your mobility /strength /recovery- it will happen gradually at first, but it will happen
As for your parasympathetic nervous system thermostat being broken, (it’s a bit more than the menopause) yup it’s a Fcuking joy. (I feel like a neurotic old lady/Katy Perry’youre hot when you’re cold..’..)
Do u know, I find an asprin and a glass of tonic water helps
But what we can’t change, we must adapt to, right ?
And write a book/screenplay ASAP
I think that the whole MS industry is out of whack frankly
Hardly anyone speaks of the secondary progressive / end stage (probably because they’re dribbling into their cornflakes smelling of p’ss n biscuits- i can say that because I’ve been there)
Like the wheelchair kamikaze? He was v astute and verbose and his blog was brilliant- but he stopped…his voice was identifiable, familiar and true – but I suspect it got too much? (So it’s left to the RR to represent us all – even though it’s all one illness )
Who actually speaks out of the reality’s of this illness at the sharp end?
How the treatments are sometimes a lot worse than the disease?
How the patience runs out….
– you’ve been a corporate queen, you’ve made your point, you know you are good at your job; well now it’s time to put all of that genius into a book or a screenplay honeybunch- the rest will sort itself out
(A mini fold up scooter makes you feel less like a spaz btw just sayin)
Go Bethy !
Bethy
May 28, 2020 11:18 pmDamn I have the best and most amazingly awesome readers. Honestly. Thanks for this. I needed to hear every single word. I owe you. Some words. Many many words. ♥️
Gina Snyder
May 30, 2020 8:16 pmI feel like you just wrote my story. I struggle with this most every night. My feet have gotten so hot that I’ve gone and stood in the bathtub with cold water pouring over my feet. Seems to help most time.
Praying for you.
Bethy
May 30, 2020 9:51 pmDammit. I wish it wasn’t your story too Gina. I’m sending you good vibes for as good a summer as possible. ♥️