Yes, Virginia, There is a Santa Claus.. While he is not a physical.person, but an ideology of a sort, he still exists as the Spirit or intention of Christmas.. And oddly enough so does heatstroke in the winter, the day after Christmas. Neither is a myth.
On Boxing Day (December 26th here in Canada) I was dropping off presents to friends. Did I stay,? Yes, but only for short, outdoor, social distanced, safe visits with masks handy. I knew I would be outside for a little bit, so I dressed for the weather.. It was just below freezing, so I was wearing a nice snuggly sweater & with my coat on I was nice & cozy outside..
After I got home, after a long day, and a long day on Christmas Day aswell, I was just exhausted. I took off my jeans and lay down for a nap.
I woke 1½hr later, nauseous & with a headache. Normally this is just my body telling me that I’m hungry because I haven’t eaten a lot during the day. Had a snack but halfway through, realized I was feeling flushed & warm.. A peek in the mirror told me what was going on.. My face was bright red..
I was still wearing my sweater! In my defense, it was a brand new sweater that I had never worn before and was not aware of how deceptively warm it is.. So I yanked off the sweater & my skin underneath was pink from the warmth..
Went to hop in the shower to warm up. My regular ‘hot’ setting I use for showers wasn’t the hot hot it normally felt like, but cooler. Since I wasn’t feeling temperatures like I should be, I set the water a smidge cooler before I hopped in… Bit by bit I turned the dial slowly down to cooler temperatures to slowly cool my body down. It took 20-30 minutes to start feeling like I was a normal temperature.. My colour was almost back to normal when the time I was all dried off.. After my shower, I simply crawled into bed to sleep it off…
I woke up a few hours later, without the nausea. So I ended up finally taking my nighttime meds because I didn’t want to risk taking them earlier and just chucking them up which is what I figured would happen..
The headache finally abetited a few hours later with some Excedrin…
Note: You can also get heatstroke from wearing too many layers outside & not taking them off as you warm up like when skiing..
Yes Virginia, You Can get Heatstroke in Winter
So, yes Virginia, There is a Santa Claus, it’s not a myth . & Yes, Virginia, You can get Heatstroke in the Winter. Be careful
The holiday season is supposed to be the hap-happiest time, the most wonderful time of the year! Unfortunately, it comes with a lot of stress and expectations. Many healthy or ‘normal’ people can find it difficult. Those dealing with chronic illnesses like fibro, CFS/ME, lupus, etc have it worse.. Unfortunately, for someit is the worst time of the year.
Here are some strategies that can help when things get hectic:
• Pace yourself. Conserve your energy and taking it slow. • Say “No”: You can only do so much. If you overextend yourself, that can & usually does instigate a flare in symptoms. • Ask for help. Again, you can only do so much. Ask someone else to help out with what you can’t do like stringing up the lights • Stop the crash by stopping before it happens. . If you go until you’re too tired or too sore or too stressed to do more then you most definitely will crash. “Just do one or two more things, or visit one or two more shops, or go down one or two more aisles'” – this thought process only leads to decreased health.. • Keep it simple. —Decorate but not as much, celebrate—but not as much, cook if you can—but not as much.” • Put some extra thought in any travel plans (well, not a an issue this year, but in the future) traveling during the holidays. A busy travel schedule can be hell. Give yourself the time you need .. To recover from a travel day.. To rest between flights& have sufficient layover.. & Bring what you need to travel. Be it snacks, water, ear plugs, eye mask, medications . Plan ahead and pace yourself. • Prep food ahead of time. Get the veggies ready to throw in the pot, make the potatoes the day before, roll & fill the pies a week or two before & freeze.. If you do breakfast, mix up your eggs, or pancake mix or French toast egg dip prior.. the night before so it ready on Christmas morning. • Organuze. Set the dinning room table the week before, or the kitchen the night or two prior to whatever extent you can. • Leave guilt behind! Take a reality check. You have a chronic pain illness which limits what and how much you can do. Do not blaming yourself because you can’t provide the same elaborate holiday festivities you once did. Don’t even try to do everything you think your family expects from you. Don’t put those expectations on yourself – they are not realistic aspirations. • Set priorities. You can no longer do every single holiday traditions you used to. You now have to determine what means the most to you & consider the energy levels required. Some can be modified like I stead of going walking to check out Christmas, you take a drive to check out the lights. So, again, be realistic. • Avoid overnight visitors if you can.. If you can’t, set the expectations like ‘I’m not making you breakfast, but help yourself’ or ‘I don’t get up until 10am so they know not to knock off n my door unless it’s an emergency.’ or ‘Can you please strip the bed before you go – just toss them into a pile on the floor for me to wash.’ • If you are hosting, you can (again, not this year) ask each one to bring one or two dishes, So my sister brings the turkey, my be CES do the stuffing & gravy, my brother brings the vegetables, Mom brings the desserts.. This leaves yourself only one or two simple items to prepare. In this case bun’s & potatoes. OR just go somewhere for dinner or even a family vacation together over Christmas . • Organize your gift giving. Keep a list of who is getting gifts & what, so you won’t have the foggy moment of ‘Did I get this for Uncle John, Cousin Sue, or my brother?’ I even make note on where to get things so I’m not heading the same time 3 times. Plus My cookie list: I make 3 different sized bundles of cookies every year. A small ½dozen to the little guys or extended family, 2 doz to the nieces, nephews, godchildren (no, Kaden, my Godson and my nephew does not get two no matter how much he’d like that), & 3 doz to bff’s, my pain doc, & the bf’s… • While it may be more expensive, the extra cost may be worth it to shop online. You avoid the stress and exhaustion of holiday shopping in crowds of people & lots on scencury impact. Gifts can sometimes be sent directly to the recipients, saving you the hassle of finding a box, packaging the gifts and waiting in line at the post office. • Use gift bags instead of traditional wrapping or there are decorative boxes that you can just drop something in, tape it, add ribbon & done. It is physically stressful on the body to wrap gift after gift.. My back always gives out. • What your diet!.. Do not over eat. Take home leftovers for later instead. If you eat too much, especially too fast, you just know your body will retaliate in some manner. And avoid all the extra sugar available at this time of year, cookies, cakes, candies, pastries… • Change your schedule as little as possible. The changes on Christmas Holiday & especially Christmas day frequently send our bodies out of whack,. Try & keep your normal activities going.. Keep up with an exercise regime. Stick, to a relative amount, with your regular diet. Keep your sleep schedule as close to normal, if you have your book club meeting stops for 2 weeks, schedule a chat with on of your friends at the same time so that you are still doing something in lieu.. • While I keep seeing the recommendation of avoiding Eggnog, I can’t agree with this, but you do need to be careful. Egg Nog has both milk/cream & eggs in it so those sensitivities need to be confirmed. If you are buying your eggnog, be aware there a ton of preservatings, thickeners & other chemicals in it. If you make it from scratch – eggs, milk, sugar & vanilla, and while it tastes better, you can not keep it around forever, even in the fridge. • Take time for yourself.Even if it’s just two slow deep breath’s, or an hour meditation, or ordering dinner in or doing your nails.. Self care at this time if year is just as important, especially with the limitations & upcoming 1 month lockdown here where I am.
With everything going on at Christmas time, it’s inevitable that while you may not X ash, you’re not going to feel great on Boxing Day. . If possible, just stay home and rest. The more time you can take, the better.
It’s also pertainent that these tips you need not only be aware of during the holidays, be the rest of the year throughb as well.
As of writing this entry, the area in Ontario which I live is at level red. This may change before Christmas as it is currently being revisited. But what this means is that while we are not on lockdown, broader, more stringent measures & limitations are in effect..
Our health department recommends that families should not visit any other household or allow visitors in their homes. Everyone should avoid social gatherings.
Avoid in-person gatherings.
Celebrate only with members of your household.
Connect virtually with loved-ones and friends outside of your household.
Avoid travelling.
Follow all public health guidelines.
Stay home if you’re sick or have symptoms.
What does that mean for me? It means our initial plans for Christmas with my sister’s family is now out. We had planned out a safe socially distanced day, but it no.longer is considered a ‘safe’ plan. So it looks like we will be doing virtual Christimas.
Once I know what we finally decide on – I’ll let you know.
With COVID, Scouts Canada now does their membership structure differently. For the fall session they had extended current memberships and gave complimentary memberships to new members as long as there is sufficient leadership and space. The new Scouting year starts January 2021.
This means we have finally ended the 2019 – 2020 Scouting year. We’ve lost some youth and, surprisingly, gained some youth. The kids just seem to have had a blast and the leadership is glad to have a Christmas break.. LOL..
Cookies!!
In the past for our final meeting we would bake cookies. The youth would press them, decorate them and they’d go home with cookies. But because of covid we cannot have shared food in that way nor are we allowed to be inside in person. Our work around for this? Our second last meeting was virtual with everyone at home baking their cookies. They got to choose the recipe and they mixed them up and baked them (if appropriate).. Our final meeting this week just passed was a campfire and a cookie swap. It’s a neat way to keep a tradition but modify it for the modern world. Plus not many of the youth will have had a campfire with this cold so it was a new experience for most.
So I work with two different groups. The 1st Oshawa Cubs and the 13th Oshawa Cubs.. And both groups are running the exact same program so last week both groups baked their cookies and this week both groups had their campfire and cookie swap..
On Tuesday we had 13 participants in the exchange & on Wednesday we had 15 participants. And each participant gave at least one cookie so I came home with a minimum of 28 cookies. Actually 32 because I swapped out Raksha’s coconut cookies that she didn’t like.. I think final total I think I actually ended up with about 50 cookies, Plus donuts.
The Cub’s Cookies
I’m just really glad to have such great youth & an awesome leadership team.
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What does this have to do with Fibromyalgia? Other than the enjoyment I get out of working with these kids and being part of Scouting, absolutely nothing. While, yes, Fibromyalgia is a title of my blog at this time, It also says and”other ramblings by NeonRose” since that’s me this is one of my other ramblings… Check out my IG, ScouterKoolaid if you want to know more about my Scouting.
My sleep schedule is screwed up again, not a surprise. So my intention was to get up early, relatively speaking, today.. That did not happen.
When my alarm went off yesterday, I kept hitting snooze and hitting snooze and hitting snooze. My brain didn’t want to get up yet.
So when I finally did get coherent, I really did not want to get out of bed. I don’t feel like I’m in the mental space to do much. So I canceled all my plans for today which included pickups for items for my Cubs, a run around the dog park with my pup and a visit to a friend.. all I’ve done today is let my dog out and go to the bathroom.. I still need to grab a bite to eat though and that will be something quick and dirty.
But it’s okay. Some days it’s just hard mentally, emotionally. Some days it’s just more difficult to cope. And for me yesterday it was one of those days.
it’s OK to not be OK.
Just recognize it for what it is and be aware. If it’s just a one-off like mine tend to be, you could just bounce back and be yourself tomorrow. Sometimes it takes a while.. couple of days.. a week to get out of the funk. If it goes more than a week though, consider talking to someone. Even just virtually, it can help..
“When I was at one of my lowest (mental) points in life, I couldn’t get out of bed some days. I had no energy or motivation and was barely getting by.
I had therapy once per week, and on this particular week I didn’t have much to ‘bring’ to the session. He asked how my week was and I really had nothing to say.
“What are you struggling with?” he asked. I gestured around me and said “I dunno man. Life.”
Not satisfied with my answer, he said “No, what exactly are you worried about right now? What feels overwhelming? When you go home after this session, what issue will be staring at you?”
I knew the answer, but it was so ridiculous that I didn’t want to say it.
I wanted to have something more substantial.Something more profound.But I didn’t.
So I told him, “Honestly? The dishes. It’s stupid, I know, but the more I look at them the more I CAN’T do them because I’ll have to scrub them before I put them in the dishwasher, because the dishwasher sucks, and I just can’t stand and scrub the dishes.”
What feels overwhelming today? Is it the dishes? It usually is for me!
I felt like an idiot even saying it.
What kind of grown-ass woman is undone by a stack of dishes? There are people out there with *actual* problems, and I’m whining to my therapist about dishes?
But, my therapist nodded in understanding and then said: “RUN THE DISHWASHER TWICE.”
I began to tell him that you’re not supposed to, but he stopped me.
“Why the hell aren’t you supposed to? If you don’t want to scrub the dishes and your dishwasher sucks, run it twice. Run it three times, who cares?! Rules do not exist, so stop giving yourself rules.”
It blew my mind in a way that I don’t think I can properly express.
That day, I went home and tossed my smelly dishes haphazardly into the dishwasher and ran it three times.
I felt like I had conquered a dragon.
The next day, I took a shower lying down. A few days later, I folded my laundry and put it wherever the f**k they fit.
There were no longer arbitrary rules I had to follow, and it gave me the freedom to make accomplishments again.
Now that I’m in a healthier place, I rinse off my dishes and put them in the dishwasher properly. I shower standing up. I sort my laundry.
But, at a time when living was a struggle instead of a blessing, I learned an incredibly important lesson: THERE ARE NO RULES. RUN THE DISHWASHER TWICE!!!”
Fibromyalgiais a chronic condition characterized by widespread pain in your muscles, ligaments and tendons, as well as fatigue and multiple tender points – places on your body where slight pressure causes pain.
Myofascial Pain Syndromeis a chronic form of muscle pain. The pain of Myofascial Pain Syndrome centers around sensitive points in your muscles called trigger points. The trigger points in your muscles can be painful when touched. And the pain can spread throughout the affected muscle.
I want to talk to you about Fibromyalgia (FM) and Chronic Myofascial Pain Syndrome (MPS). Many have never heard of these conditions and for those who have, many are misinformed. And because of this, judgments are made that may not be correct. So I ask you to keep an open mind as I try to explain who I am and how FM/MPS has assaulted not only my life but those whom I love as well.
I cannot show you a physically open wound to show how much pain I’m in. If I could you would take one look at that, tell me to sit right down, get me a pillow, offer me something to eat or drink and have that concerned and understanding look on your faces. However with Fibromyalgia, you will hear from many people that they would rather have a broken leg any day than suffer the kind of pain these disorders inflict. To me, a broken leg is even a poor example to compare suffering to these disorders and an insult to those of us with those disorders. You see, I suffer from a disease that you cannot see; a disease that there is no cure for and that keeps the medical community baffled at how to treat and battle this demon, who’s attacks are relentless. My pain works silently, stealing my joy and replacing it with tears. On the outside we look alike you and I; you wont see my scars as you would a person who, say, had suffered a car accident. You won’t see my pain in the way you would a person undergoing chemo for cancer; however, my pain is just as real and just as debilitating. And in many ways my pain may be more destructive because people can’t see it and do not understand….
You must see with your ears and your heart what your eyes cannot see. You must listen carefully to what I am telling you. What I describe to you may not make much sense to you and may be difficult for you to understand. Sometimes it may seem to you to be a different universe that I discuss. Know that it probably is. You don’t have to fully understand my universe and you cannot possibly. However hear my pain, listen for red flags always of any danger signals where you may need to help with added assistance. I like to call it “sending in the troops.” Anytime I do not seem in touch with reality. Please don’t get angry at my seemingly lack of interest in doing things; I punish myself enough I assure you. My tears are shed many times when no one is around. My embarrassment is covered by a joke or laughter, but inside I want to die. You will hear many things from me that to you seem as easily resolvable. You may wonder why I make the same “wrong” decisions over and over again. Why haven’t I learned by this time? Why can’t I see the senselessness of my behaviour? I may seem to be getting my life together and them bottom out all over again. Please understand the difference between “happy” and “healthy”. When you’ve got the flu you probably feel miserable with it, but I’ve been sick for years. I can’t be miserable all the time, in fact I work hard at not being miserable. So if you’re talking to me and I sound happy, it means I’m happy. That’s all. I may be tired. I may be in pain. I may be sicker than ever. Please, don’t say, “Oh, you’re sounding better!” I am not sounding better, I am sounding happy.
What is happening here? Am I lazy, stupid, etc? Nope. My physical brain and body is very different than yours. I experience life different than the way you do. I feel different than you do. Most of my “friends” are gone; even members of my own family have abandoned me. I have been accused of “playing games” for another’s sympathy. I have been called unreliable because I am forced to cancel plans I made at the last minute because of the burning and pain in my legs or arms and shoulders. The pain can be so intense that I cannot put my clothes on and I am left in my tears as I miss out on yet another activity I used to love and once participated in with enthusiasm. Do I experience mood swings? If I am hurting I may be angry, sad, depressed, or any of the hundred moods in the world. I’ll never know what mood I will wake up with? I may treat you cruelly and say horrible things to you; I may ignore you completely, or cry on your shoulder unstopping when I’m in Fibro Flare. You may wonder what you said or did that made me this way. Well you did nothing it’s the Fibromyalgia and all its underlining factors causing this.
While the most predominant symptoms of fibromyalgia include widespread pain and persistent fatigue, the resulting cognitive impairment of this condition may be its most maddening. Commonly referred to as fibro fog, this symptom is a conglomeration of cognitive challenges. Fibro fog is understood to be a physical symptom of fibromyalgia, not a psychological one. Just as no two individuals experience fibromyalgia in the same way, fibro fog also has a varying range of indications, including: Mental confusion, Fuzzy thinking, Short-term memory loss, Inability to concentrate or pay attention, and Language lapses.
This is why I feel like a child at times. Just the other day I put the eggs I bought at the store in the pantry, on the shelf, instead of in the refrigerator. When I talk to people, many times I lose my train of thought in mid sentence or forget the simplest word needed to explain or describe something. Please try to understand how it feels to have another go behind me in my home to make sure the stove is off after I cook an occasional meal. Please try to understand how it feels to “lose” the keys, only to find them in the freezer. As I try to maintain my dignity the demon assaults me at every turn. I have a physical illness and it isn’t my fault and I didn’t ask for it I don’t want it and I don’t deserve it.
Occuring at the deepest level of the sleep cycle, individuals with fibromyalgia typically lack sufficient restorative sleep. We know that at the deeper levels of sleep, called delta wave sleep, a person’s mind conducts internal housekeeping. During delta wave sleep, newly acquired information is assimilated and integrated into the brain. The inability to get sufficient delta wave sleep impairs the ability to recall information and operate at a normal level of mental efficiency.
Sleep, when it happens or restless and unrestorative
Sleep, when I do get some, it is restless and I wake often because of the pain the sheets have on my legs or because I twitch uncontrollably. I walk through many of my days in a daze with the Fibro-fog laughing at me as I stumble and grasp for clarity.
Just because I can do a thing one day, that doesn’t mean I will be able to do the same thing the next day or next week. I may be able to take that walk after dinner on a warm July evening; the next day or even the in the next hour I may not be able to walk to the fridge to get a cold drink because my muscles have begun to cramp and lock up or spasm uncontrollably. There are those who say “but you did that yesterday!” “What is your problem today?” The hurt I experience at those words scars me so deeply that I have let my family and friends down again; and still they don’t understand.
On a brighter side I want you to know that I still have my sense of humour. If you take the time to spend with me you will see that. I love to tell that joke to make another’s face light up and smile at my wit. I am fun to be with if you will spend the time with me on my own playing field; is this too much to ask? I want nothing more than to be a part of your life. I have found that I can be a strong friend in many ways. I am your friend, your supporter and many times I will be the one to do the research for your latest project; many times I will be your biggest fan and the world will know how proud I am at your accomplishments and how honored I am to have you in my life.
All I ask is that you become educated about Fibromyalgia. I am someone in your life that suffers from Fibromyalgia. You may think you know everything there is to know about it, but there is more information out there than you think. It is more complicated then you think, and it is more life changing then you think.
Lend a helping hand. If you want to be helpful to someone with Fibromyalgia, just ask what you can do. Be flexible with invitations and plans that you have made. Understand that sometimes the pain of Fibromyalgia is overwhelming. Be active. Accompany them to a doctor’s appointment and take an active interest in their treatment. You can take notes at the doctor’s office and then review your notes together at home. Don’t take things personally. Some people with Fibromyalgia suffer from sudden mood changes. Try not to take these mood swings personally as they are part of the syndrome.
So you see, you and I are not that much different. I too have hopes, dreams, goals and this demon. Do you have an unseen demon that assaults you and no one else can see? Have you had to fight a fight that crushes you and brings you to your knees? I will be by your side, win or lose, I promise you that; I will be there in ways that I can. I will give all I can as I can, I promise you that. But I have to do this thing my way. Please understand that I am in such a fight myself and I know that I have little hope of a cure or effective treatments, at least right now.
Thank you for spending your time with me today. I hope we can work through this thing, you and me. Please understand that I am just like you.
The annual observance of the International Day of Disabled Persons was proclaimed in 1992 by the United Nations General Assembly resolution 473. It aims to promote the rights and well-being of persons with disabilities in all spheres of society and development, and to increase awareness of the situation of persons with disabilities in every aspect of political, social, economic and cultural life. It also aims to promote an understanding of disability issues and mobilize support for the dignity, rights and well-being of persons with disabilities.
International Day of Persons With Disability December 3, 2020
Fibromyalgia 
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