Along with my Multiple Sclerosis I have a fun little case of Narcolepsy. Now….not the one with Cataplexy….. you know the one that is shown in movies where a person falls asleep and then ends up face down in their soup. No, I don’t have cataplexy. Thank goodness. Now this is one result of my MS that I actually think is pretty cool. It isn’t a common condition that appears because of MS, but it does happen enough for there to be a definite link between the two. I’m a weird case that has always presented with some of the odd / uncommon symptoms of MS. I miss out on some of the more common symptoms like Optic Neuritis. I’ve been diagnosed for over 16 years, had MS for over 20 and have never had a bout of O.N. I presented with odd things like not being able to walk in the morning, having a hard time picking my feet up to walk/run, Lhermitte’s Syndrome, palsey, Trigeminal Neuralgia, myokemia, fasiculations….etc etc etc. So Narcolepsy is just another cool syndrome in my line up. The cool thing about it, at least to me, is the hypnogogic sleep and the fact that I dream every night, multiple times, and I can remember some of those dreams. I have lucid dreams because of the Narcolepsy. I am dreaming before I actually fall fully asleep. I just think it is fascinating what our brains do to decompress and essentially file memories or work out problems. I’ll write about what I remember from some of my dreams when I have an extraordinarily interesting one. At least interesting to me. 🙂
Category: The Monster
Life with Multiple Sclerosis
IT IS HOOOOT…and I stupidly did too much outside in that Darn Heat!!
Okay….so people with Multiple Sclerosis can have an unpleasant reaction to the heat. When the optic nerve is affected, it is called Uhthoffs Phenomenon. M.S.’ers (people with multiple sclerosis) can also experience other undesirable symptoms when negatively affected by the heat.
Below is an excerpt from a Healthline.com article about Uhthoffs Phenomenon.
find the complete article at – https://www.healthline.com/health/multiple-sclerosis/uhthoffs-phenomenon
“How heat affects MS
A 2011 study reported that between 60 and 80 percent of people with MS experience heat sensitivity. Demyelinated fibers in the CNS are hypersensitive to a rise in body temperature. This makes it more difficult for the body to receive internal signals. This can result in a worsening of MS-related symptoms and cause blurred vision.
The good news is that heat sensitivity and the related worsening of MS symptoms are only temporary. This is called pseudo-exacerbation. It doesn’t mean new lesions, lasting neurological damage, or a rapid progression of MS.”
Anyway, back to why I’m speaking about the heat. I am trying to sell a car. It is one that my mom gave my son (a hand me down). I originally put a couple thousand $ into it to fix the water pump, some belts……and other big stuff. The car started giving my son problems again so he brought it home so we could work on it. Well…it is fixed and running fine now. My son however, only wants to drive his sisters car. She lives halfway across the country and couldn’t take her car. Her car is better on gas. His car is an Aztek, an SUV, so of course it doesn’t have great gas mileage. So his car is sitting in my driveway, taking up space. I want it gone.
The Aztek needs to be clean to sell it, right?? Well my husband has been acting like I’m lazy because I haven’t gone out and cleaned, vacuumed, and Armour All’d the inside. So I thought ‘Screw it’, I want this car sold. I need to recoup some of the money I spent on this thing. At 9:00am I got outside and vacuumed my Mazda. She needed it badly. Then it started to rain…..so….what better time to wash the car. So I washed her. It was cooler outside than normal, because of the clouds and rain. The heat wasn’t bad yet. Since it wasn’t too bad, I went ahead and washed the Aztek.
I then went inside and told my husband that I washed it and that I would vacuum some of it. I told him that it would be nice and a big help if he could finish it. Oh goodness…..I received a snarky remark like “oh, so you’ll only do part of it, and I have to do the rest.” I reminded him about the heat and the MS…and my possible reaction to the heat.
I don’t take comments like that well. I get mad when he acts like MS isn’t a big deal. We have this ongoing feud about my MS and me going on disability. He wants me to go on disability, I don’t want to do that yet…..so he gives me the “you don’t want to go on disability….then your MS isn’t affecting you negatively”. Of course that isn’t true. I take 5 different pills in the morning, 2 at night, and a shot every other day. Some of those morning pills keep me awake so I can go to work. UGGH.
Anyway, I vacuumed the entire Aztek and Armour All’d the interior. Took me like 2 hours. It was horrible. I went through two large YETI jugs full of water. Changed my work clothes 3 times. MSers are very prone to bladder infections. We can’t wear wet pants for too long or it is almost guaranteed that we will get a bladder infection. NO WOMAN wants one of those. They are miserable. So the clothes got changed as soon as they were soaked with sweat….EEEEEEWWWWWW. The day had turned REALLY hot. The clouds disappeared when I was halfway through vacuuming the front of the Aztek. The rest of the job was MISERABLE.
This is how the heat affected me. I got tired, light headed, clumsy, unsteady on my feet, I tripped and fell twice, and I accidentally cut a big chunk out of my pinky finger while cleaning the interior. YEAH, not fun. I still have to vacuum the floor mats so I’m not quite done yet.
So all of you ladies and gents need to stay cool. Air conditioner, swimming pool, cold drinks, and cold showers.
Secondary Progressive and PUPPERS !!!
I saw my Neuro today. It was my monthly Prescription appointment, and the review of how the Effexor is working. So the new medicine seems to be working. We will know once I reach the full dose and have weaned off of the current med.
As far as my balance problems are concerned….you know, where I get up and am not stable…where I almost immediately start to tilt over or stumble to the side and fall, it isn’t due to any new M.S. inflammation. She said it is just due to the M.S. Basically I have transitioned to Secondary Progressive M.S. and even if I don’t experience a recognizable exacerbation this is just the way it is going to be. I will continue to accumulate damage and see weird things like this happening. New symptoms will appear and stay, and old symptoms will reappear and never disappear.
I guess this is the way it will continue to progress. I am 43, and now I have at least 1 symptom that will be with me forever. I wonder how many more symptoms will show up in the days to come…..how many symptoms will never go away. How will those symptoms affect my life? I’m still young. Will I be able to walk in 10 years? Will I still be able to take care of myself in 20 years?
My husband keeps pressing me to ‘talk about our financial future’. I can’t even imagine 10 years from now…..much less 20 or 30 years from now. I told him all he needs to know is that I have a 401 K that I have contributing to for about 15 years, and I have a mutual fund that was set up for me when my grandparents passed away. I told him I am not where I want to be “balance” wise but that I don’t intend to quit working until I just can’t function there anymore.
AND so ….I take it one day at a time….and only look 5 ish years into the future. I won’t even think about plans out further than that. I’m not even guaranteed to have that next 5 years unfold like I want it to.
Keep moving forward, stay positive, turn and walk away from those that are negative, and don’t feel bad for ‘refusing to talk about’ things before you are ready to.
The only real advice I can give is……Rescue a few Black Mouth Curs….Let them cuddle up with you…..give them lots of snuggles, back rubs, and scratches behind the ears. Allow them to lick your chin, put their wet noses in your face, and flop their 104. degree F bodies up against yours while they sleep.
The love of a pet is pure….they love without conditions……all they want is YOU. You are their WORLD. You come home and they treat you like a looooong lost friend. Nothing makes them happier than seeing you. You can’t beat that for some great MS therapy.
Words for a BAD M.S. day
Words describing a Bad M.S. day. Now, let’s just start with my favorite F-word.
Frustration, Irritation, Brain-fog, Annoyance, Exasperation, Anger, Hypersensitivity, Agitation, Irritability, Vertigo, Confusion, Stutter, Degeneration, Stupidity, Restlessness, Chaos, Tangled, Trip, Fall, Hassle, Sh*t, Confusion, Pain, Ache, Cramp, Unknown, Discomfort, Hurt, Sore, Hell, Misery, Burn, Twinge, Pins & Needles, Twitch, Scared, Anger, Pinch, Hate, Itch, Mope, Prick, Throb, Sadness, Clumsy, Forgetful, Resentment, Unsteady, Numbness, Distress, Exhaustion, Difficulty, Exacerbation, Peeved, Atrophy, and Damn-It.
Resentment…with a side order of guilt.
Resentment and guilt. I have felt both while dealing with my M.S. As all of us with Multiple Sclerosis know,this illness sucks the life right out of you. I mean that in the sense of the tank being empty. You run out of gas as that M.S. fatigue sets in. You turn into a lump of lead. You lay down and that ANVIL Wile E. Coyote used to buy from A.C.M.E. has been laid on your chest. You rest for a while and then start to feel guilty for being in bed so early. “I need to do dishes, laundry, vacuum the carpet, then sweep and mop the tile. I need to go to the grocery store to get dinner and stuff for the kids’ lunch tomorrow. I can’t forget to make cookies for their class this week……” While feeling like a waste of space you attempt to roll out of bed and it is like trying to pull yourself out of a tar pit. Every movement seems harder than the last. You get up, make coffee in a vain attempt to get some energy, and start taking care of your to do list.
Halfway through the list you are miserable. You are so tired you can’t even hold a plate up to wash it. It keeps slipping out of your hand. Damn it, you broke another one. Now you start to get resentful. You can’t stand how people still expect you to be a super mom…..super wife…super worker….and superwoman. At least it feels that way. You hate the fact that everyone else gets to have fun while you, who had to do all the house work by yourself, can’t lift an arm much less do fun things with family and friends. You resent the fact that you are the sick one and that no one helps you. Why is everyone else allowed to be healthy???
Yes we all get resentful living with M.S. It is a bitter pill to swallow but even the nicest of us feel like this once in a while.
With M.S. though, it isn’t just the patient that feels resentment. The partners, husbands, wives, children, friends, family, and even coworkers harbor some resentment toward your M.S.
You take a lot of time off. Of course your coworkers don’t know that the time off is for doctor’s appointments. Or, they think you are on a vacation and living it up. When in reality you are home trying to get past new symptoms from the latest exacerbation.
Friendships can wither as your priorities change. You don’t call as often as you used to and when you do you never feel good. You rarely go out for ‘Girls Night’ anymore. Friends may drift apart.
Partners, husbands, and wives may resent your M.S. because it swallows up so much of your life. Most of your focus is on keeping the Monster at bay. You don’t get to dote on your significant other as much as you used to and sometimes “Romance” takes a back seat. You are too tired, can’t get aroused, can’t reach that peak, and sometimes just hurt. Significant others can feel ignored and neglected.
Children may feel ignored too, because you can’t play as much as you used to or because you are always tired and have to rest. They may be scared. Knowing you are ill, and not having the guarantee of ‘Mommy/Daddy’ is going to get better, can be terrifying. They may get angry with you, thinking it is your fault that you aren’t getting better……Why can’t you go to the game or dance recital, why can’t you take them to the movies, or to the beach for a swim? Is that a child’s version of resentment?
So what can you do? Do we suck it up, force a smile, drink lots of coffee, make phone calls to friends, schedule a date night with your other half, send the kids to the movies with their aunt, and pay someone to come clean you house ….just this once? Most of us probably do some version of this. We try to keep it together, we try to be strong for everyone special in our lives. Sometimes it is too much, but sometimes it is just enough. Enough to remind people how much you really do care.
On the flip side….I also think if we are going to do the suck it up work mentioned above we need ME time. I mean… ALONE….me time. Time to recharge. You can book a night at a hotel and just sleep in the nice cold room, order room service, and watch t.v. Yaaay, you don’t have to clean either . One of the best things would be, not being required to ‘look presentable’. Screw that, I’d make sure there wasn’t anyone to look presentable for. I really do mean ALONE me time. I’d have messy hair, wear my threadbare pajama shorts and tank, go barefooted, and then enjoy a bottle of wine. For the finale, I would put in some ear plugs, drop the room temp to ice box levels, snuggle under the covers, and sleep for as long as I wanted.
Best wishes, and don’t forget to schedule that ME time.
Ha Ha !!! Now it has a Name.
Yup, now it has a name. That EVER ANNOYING loss of words we with M.S. suffer. Right in the middle of a conversation your mouth stops moving…you are blubbering…getting more nervous with every second. The more nervous you get, the worse the blubbering gets. The person you are talking to is staring at you, expecting some sort of response. You can SEE the word spelled out in your head. You see a picture of the thing you want to talk about. You just can’t spit it out of your mouth. You feel the situation getting worse. You still haven’t said anything….It is going on 45 seconds and you have a very pained look on your face. You TRY to spit out the word. You make the shape of the first letter with your mouth….air blows through your lips….but no sound comes out. You hope, hope, hope, and hope some more that the person you are trying to talk to just thinks you have a stuttering problem. Issues with stuttering are so well known now that no one thinks twice about it. This whole time you are wishing you could speak and moreover you are hoping you don’t look like a moron. Finally something falls out of your mouth. It sounds forced and maybe slightly slurred. You think about what you just said and are horrified. What you said had nothing to do with your conversation. It was totally out of left field. Oh My God….you are mortified. How do you recover from that?
This happens to me ALL the time. It happens more when I am stressed or under pressure, when I have been put on the spot.
My boss knows about my M.S. and has been very understanding. He has been a friend and supported me through the bad M.S. times. As my boss he has a job to do and the job isn’t always easy. Sometimes he briefly forgets about my struggle with this issue. When he is aggravated he gets loud and will put his workers on the spot with difficult questions. I inevitably end up stuttering and blubbering….I feel like an idiot….I have to squeeze my eyes shut….turn away and hope that the STUPID word finally flies out of my mouth.
On lucky days I can eventually get the word out, even if it is a little late in the conversation. On bad days, I clam up, get pissed off, and give him the glare. I will just shrug my shoulders, look him in the eye, and refuse to speak. Usually he gets the picture, relaxes, and takes the pressure off. Once that happens I can usually coax my brain into behaving.
I found out today that this is called….wait for it………………………………..wait for it…… Fumbling Word Vomit.
LOLOLOLOL…..really??? I love it. That is a perfect name for it. It expresses the anger and disgust that us with M.S. feel every time we are struck dumb with one of these episodes. Fumbling Word Vomit…..BWAAAHHHHHAAHAHAHA… I want that on a shirt. “Beware, conversations usually result in a severe case of Fumbling Word Vomit.”
my Multiple Sclerosis blog
I am a firm believer in going with the flow.
Water can lie perfectly still in a puddle or crash against the shore.
As a tsunami it destroys all in its path.
Over time it carves canyons in mountains.
It sprinkles during a sun shower and batters you in a storm.
It can change from ice, to liquid water, to steam in a flash.
Water takes the path of least resistance.
Like flowing water, I refuse to stagnate.
I won’t always blog about the ‘woes of having multiple sclerosis’.
I refuse to define myself as ‘that girl with M.S.’
So in keeping with how I believe I should live my life, I will blog what is on my mind.
I will be mad .
I will be sad.
I may be estatic or full of self depreciating humor.
I will find the absurdities of everyday life and laugh at myself often.
I will strive to be content.
Welcome to – “I’m Just Living This M.S. Life….Staying Sane Since My Diagnosis With Multiple Sclerosis”
A special note to anyone who wields a Red Pen to correct grammar errors…..I write like I speak. If I followed all the ‘rules’ my writing wouldn’t feel like mine. Okay….lol…you’ve been warned. Read on if you dare.
really? Really?? Are You KIDDING ME ?
Uggh, I’m tired. M.S. is exhausting. Yeah, I mentioned that already didn’t I? It’s not just the physical and mental crap we put up with….within our own bodies. It is having to wade through comments, sometimes ridiculous, other times aggravating. Most of the comments are made by well meaning people…..more often than not they are unsolicited.
Because there are so many well meaning people that genuinely want to help, you learn to listen, nod, and say thank you I’ll look into that.
Every so often there is a gold nugget in there….like someone saw an article about stem-cell research and MS, or that a new DMD is being approved. Those are helpful nuggets.
There are some annoying and kind of ‘out there’ suggestions too.
Some of the whacked out comments I have heard are:
- “but you look fine.” – so…exactly how is someone with M.S. supposed to look?
- “you should get some more sleep” – really, I hadn’t thought of that…
- “so, do you still have M.S.?” – Seriously?????
- “you should do the paleo diet” – ugggggh
- “I heard they found a cure.” – lol….really?
- “you shouldn’t exercise because it will make your M.S. worse.” – uh no, I like my finisher medals
- “you should go on disability” – uggh, and live on that little bit of money…I like having things and spoiling my dogs…
- “it will be EASY to get social security / disability” – oh, okay…have you ever successfully received either for having M.S.
Then there are the whispers and stares you receive when having a Really Really Really bad M.S. day. There are some decent days where you are doing pretty good but some days you wish you would have stayed in bed. Maybe you are uncoordinated when you walk, drag one foot a bit too much, talk with a little slur. All the sudden people are whispering and looking down at you….imagining (with their small little uneducated minds) that you are drunk.
It also aggravates the he** out of me when people with M.S. that park in handicapped spots (legally), get berated for ‘not being handicapped’ just because they don’t look disabled.
I dare anyone of those idiots to perform an M.S. experiment. Go without sleep for 36 hours, put on some moderately heavy ankle and wrist weights. Wear them throughout the 36 hour experiment. Cook with them, drive with them, shower with them, walk with them, etc. etc. Make sure it is a hot day. Right about 94 degrees should do it. Now go to the grocery store around 2:00 pm and park at the back of the parking lot. Get out and do the shopping. By the time one of those idiots got to the milk aisle they would be rethinking that handicapped parking spot thing. That is what M.S. fatigue feels like, and we have it for WAAAAAAY more than 36 hours. We can look GORGEOUS, STRONG, NORMAL…..still have M.S. and all the shit that goes with it.
But on the Bright Side……I have quite a few good days and not too many really, really, really bad days. I haven’t gotten to the special parking space stage yet….and hopefully won’t for a long time.
Went to the Neurologist Today….
lol….the picture has nothing to do with my trip to the Neuro. I just like the picture. I took it before one of the half marathons I ran a few years back. It was a very nice, brisk day. The water was just, Pretty.
Today was the big day….the monthly visit to the Neurologist. Yes, MONTHLY. I don’t have to go every month because I am having a hard time with my M.S. No, there is another reason, but in an effort to not cause WAVES….I’m keeping my mouth shut. Suffice it to say, I take some of my medicine because I CHOOSE TO WORK AND BE A CONTRIBUTING MEMBER OF SOCIETY. ‘Nough said !!!
So, YAAAAAAAY…..no major change to my meds. There was a possibility that the disease modifying medication I’m taking would change. It was possible that the Betaseron was no longer working for me. The Neuro looked over my last few MRIs and decided that there wasn’t enough of a change to warrant a med switch. Thank goodness. Lord knows I don’t want to get used to any new side effects.
I did research new meds though. I decided that if I had to get off Betaseron I would push for Mayzent…..I think that is how it is spelled. It is brand new…as in approved this past March…(I think).
BUUUUUUT, it’s awesome that I don’t have to worry about that.
I did ask however, to change anti-depressants. I have been taking Bupropion for about 15 years. I am starting to feel like a Zombie. Not good. I asked if I could switch to something else.
My end goal is to get off the Bupropion and 1 other medication. I hope that in the next few months I am successful.
Thank goodness for the best Neuro I have had in many years. She is amazing. She listens and she doesn’t “pooh pooh” any concerns I have. She doesn’t think of me as a whiner….That’s just not me. “oh I hurt…I need pain meds….pout, pout, pout…please give me….Something”. That’s not how I operate. She knows I am not that type of person, that I am not going to mention a problem unless there is really an issue. Even then, I don’t believe that every pain or problem requires drugs. I’ve always believed that I’d rather know what is going on within my body. If I hurt, it is my body alerting me to a problem. I’d rather feel it, acknowledge it, and figure out how to work with it. Hopefully I will be successful and find a resolution to my pain or whatever issue I am having without any EXTRA medicine.
Of course I am not unreasonable. There are limits. Acute relapses require some type of steroid intervention. Acute relapses are caused by inflammation and steroids help stop inflammation. If you stop the inflammation, you slow the damage that is occurring during the relapse.
Trigeminal Neuralgia is another exception to the rule. I know first hand why that illness is called the Suicide Disease. It occurs usually on one side of your face. Brushing your teeth, a slight touch, a breeze, even breathing causes excruciating pain. I envision that illness as a monster sitting back laughing at our pain…..”Ha, Ha….the jokes on you. Not even narcotics fix this pain.” That is true. It is HORRIBLE. There are people who have that illness ALL the time. It is a disease unto itself. The normal treatment for it is to cauterize the trigeminal nerve in the face. It can cause facial paralysis, but with that much pain most people don’t give a SH**. Burn the nerves and fix it.
Luckily for us with MS we have some recourse. We know the damage may just be caused by the relapse. Once the steroids take effect, the pain usually subsides. During that steroid dose an Anti-Seizure medication can help deaden the pain. Not stop it….but deaden it a bit. I think seizures affect the nerves in a way that may be a little similar to MS…..or MS can mimic the way seizures affect the nerves. Nevertheless, for those with MS, there is normally a resolution in sight.
Yes, I had this once. I first felt it when I went to brush my teeth one morning. I touched my toothbrush to the teeth on the left side of my mouth and was shocked by so much pain that I almost fell. It was a shock that reverberated through what felt like the entire bone structure on that side of my face. Think of that tuning fork your Neuro sometimes does tests with. Now hook it up to a source of electricity, smack that tuning fork hard on the table, and press it firmly against your face near the junction of the jaw and cheek bone. YUP…can make you pass out.
My Neuro prescribed a seizure med & a course of dexamethasone. About a week later the pain was gone. Alas, so were a few handfuls of my hair…. 🙁 …. but I really had no choice.
Sooooo, I veered off course a little bit. I was talking about my decision to take medicine or not depending on the situation. I take a DMD of course…. because DUH…..I want to still be walking in another 10 years. I also mentioned an antidepressant. MS does weird things to your brain. I don’t know if an area of my brain that controls emotions like happiness, sadness, elation, or depression has been affected by MS. Is that area severely damaged by plaques??? I don’t know. Does the DMD help cause depression or am I just one of the thousands of people prone to depression? I’ll probably never know. What I do know, is that thinking about turning the steering wheel and careening over the side of the bridge you drive over 2 times a day, for the last 20 years, is a BAD, BAD, thing. Not suicidal mind you. Just very apathetic about it. Wondering “Huh……it’d be so easy to just turn the wheel and go right over the side…..” I never thought “Oh I hate life, I want to die….tomorrow I’m going to drive over the side of the bridge.” Just the apathetic…Huh, I wonder what it would be like?.
See, I’m not Rabidly against taking medicine. I have a realistic view about what I can handle on my own, and what I can’t. I’m lucky my Neuro understands my stance on taking or not taking medicines.
Anyway I am trying out Effexor…(I think that is what it is called) starting tomorrow. Hopefully it will work wonders and I will be able to stop taking those other 2 medications without any problems.
Cross your fingers for me……and here’s to hoping for an uneventful new day!!
Heat and Multiple Sclerosis…….sooooo not on my list of favorite things
In the last post I mentioned that I live in a state that feels like it is situated on the outskirts of Hades. Well it is better than saying the outskirts of He**. It’s not evil here, it is just horribly HOT !!!
It so happens that I used to run at 2:30 in the afternoon 5 days a week. Yeah I was REALLY tan…….and it was HOT. It was okay for a few years. Then all the sudden I would start stumbling. I’d sway and ramble right off the sidewalk and MAN did I slow down. Not a little slower, but my feet were barely coming off the ground. That is probably why I was stumbling….I was tripping over my own feet.
On my long weekend runs (one approx. 13 mile run on Saturdays) I’d get STUPID. No other way to say it. My running route was a straight line. I’d leave from my house, run 3.3 miles in an almost straight line, turn around, run that same 3.3 miles toward home, and then do it all over again….out and back. On the last 3.3 mile leg in…I’d get lost. Not a turn down the wrong road lost, but a “Where the hell am I” lost. I knew I was out for a run and I knew I was on my way home, but for the life of me ‘NOTHING’ looked familiar. I was doing this run with a friend one Saturday and I suddenly had this ‘lost moment’. I told her I didn’t know where I was or how to get home. Being the wonderful person she is, she continued running with me until I figured out where I was.
Of course this was before I was diagnosed.
Other ‘getting STUPID’ things were…after said runs I put my keys in the freezer, couldn’t figure out how to work the shower, and sounded like I had an entire bottle of Tequila allllllll by myself.
On top of that, after the run I’d pass out on the couch. Not a fall and hit your head pass out, but the can’t keep your eyes open type of passing out. It was horrible. My little kids were home and here is a passed out mom, who put her keys in the freezer, stunk because she couldn’t figure out how to work the shower, and sounded like she was 3 sheets to the wind.
A while later, after my Introduction to the Monster, I found out, (during my ‘Major Book Retailor M.S. research trip’….. mentioned in a previous post), that Heat and M.S. don’t play well together. This M.S. induced heat intolerance is called Uhthoff’s Phenomenon. Wow…..way to sort of RUIN one of the few things I enjoyed doing. It isn’t like we have a “cool time of day” here. We’re are on our 4th treadmill since my M.S. epiphany. The garage does not have air conditioning so I still have the SAME heat problem…..just without the pesky sun part. My husband and son use the Damn thing more than I do and No, an electric fan does not help…..all it does is move around the HOT air.
M.S. doesn’t play nice in the heat. The heat sort of puts your brain on the fritz. See the electrical signals – the ‘do this now messages’ in a Healthy Brain, sort of skip along happily over nerve pathways. Kind of like playing hop scotch……before you add a rock to the mix, you hop from one square to the next. Easy Peasy. Nice and smooth….a quick hop hop hop.
In an M.S. Brain, lots of rocks have been tossed on your hop scotch board. You can’t easily hop from one square to the next. You are hopping all over the board, attempting to avoid the squares that contain rocks. You try to clear two boxes in a row, wobble, lose your footing, and fall. Not Fun.
On top of the….let’s admit it…..SAAAAD game of hop scotch, adding a little heat moves the game from the sidewalk to the wet, ceramic tile in the kitchen…….and you’re playing barefoot.
M.S. strips the myelin off of nerve cells in the brain. The ‘do this now messages’ are interrupted, slowed, staggered, or sometimes stopped all together. The ‘do this now message’ in a Heathy Brain sounds like this “lift left leg, lever it forward 2 feet, lower it to the ground, transfer weight, repeat same process with right leg”
The same ‘do this now message’ in an M.S. brain (that is negatively affected by the heat) sounds something like this “lift lt eg, lev r t forwa d………2 t, lowe …to h gr..nd, ansfe….eigh…t, r..eat same pr..es. ith………ig..eg”. LOLOL…..Yeah, try to walk a straight line with that.
My advice…..if you care to listen, is to find and stay inside of a building or car with……oh……so…..nice and icy air conditioning. If that isn’t available, get in a pool. Even a kiddie pool. Prop an umbrella over your head, wear dark sunglasses, lay back in the water, and just chill.
If those options aren’t within reach there is a wide array of personal cooling devices available:
- Evaporative Cooling Towels –
- Cooling Vest using some type of cooling pack technology – they have rave reviews but are on the expensive side. Anywhere from $100 USD to almost $400 USD……..said to be worth the cost if you are traveling and cooled areas are not available
- Cooling Vest using evaporation technology – very effective. Uses water to jump start the cooling process. Best for individuals who are already very active outdoors.
- Cooling Wraps and Cooling Hats using evaporation technology – very effective. I own a couple of the cooling wraps (the size of a small scarf). They are dipped in water, wrung out, and draped across the neck or head…etc. They stay cool for about an hour. Just enough to cool off after light outdoor activity.
There are many, many, brands on the market. Just search “Cooling Vests for Multiple Sclerosis” and you will see options at all price ranges.
I’m not listing manufacturers because there are so many. I haven’t tested these products from multiple manufacturers, so it isn’t right for me to recommend one brand over the other.
Iced Tea, Iced Coffee, Ice Cream, Slushies, Root Beer Floats, walk in coolers, cold showers, penguin house at the aquarium…….feeling cool yet ???