Stuff That Doesn’t Mean We’re Okay

Posted on February 28, 2017 by MyFibroTeam

Life as a “normal” person is turned upside down when suffering from & living with chronic illnesses. Often these conditions are invisible. This can cause many to not understand and not believe that you’re as sick as you claim. They have to realize the despite the image we may project, we are in pain Every Single Day.

Then there’s the Catch-22.. Should I put forth an effort into my appearance when I miraculously do go out to look ‘normal’? Should I show up looking as bad as I feel? Or should I even bother going out? It’s a tricky thing — trying to live normally when your life no longer is. People tend to be surprised when we post a well-articulated paragraph on Facebook, have a good laugh, talk about things other than sickness (apparently lately ive been talking non-stop about Cub Scouts), write a highly researched, factually correct well written blog post, or bigger things like going on vacation even if it is just to go up to the cottage.

It is sad that we need to point out these things. It has hit many of us more than once that appearance, timed-just-right clarity of thought or momentary positive mood seem to adjust the perception of those around us creating more doubt in the truth that we each are really very, very sick.

So to that end, Take into account that while we may do things one day, these activities are not necessarily our norm, or it is something we have planned for well in advance. Review this non-exhaustive round up of things that do not mean we’re lying and actually okay:

1 – Articulation/Ability to Communicate Well

Admittedly this is currently one of my prominent disabilities, impaired cognitive function. However, many others can found themselves in the middle of a conversation in a rare moment of a clarity & articulation. And even myself even more rarely. These are the times where we have clarity of mind, excellent though process and the ability to communicate well. . In these moments, we are not communication like someone who is ill. It impairs the idea that Fibromyalgia and many other chronic disease do have cognative impairments.

i have actually spoken with several others with fibro who are highly cognizant in the change of their levels.. Personally I’m pretty sure my IQ has dropped at least 20 points by now, if not more.. In my mid-20s, I had an IQ of 180, thats hitting genius level. I haven’t had access to retesting, so I dont know 100% sure, but its pretty obvious to me.

2 – Laughing and Smiling

Apparently, those of us who are sick are not allowed to be happy, be joyful and positive. Yes, we are in pain & have memory/cognative issues, are drained & exhausted, have issues with sleep and deal with mental health issues, so some think it would get us down and we would not want laughter. In actuality, we need it the most because it feels good.. Smiling and laughing have little to do with someone’s health or pain levels. Those with chronic conditions have become strong from all the suffering they experience, they can still laugh and smile while in pain, which says not that the pain is low but that the need for relief is high.. Additionally laughing with others releases endorphins in the brain and it activates the release of the serotonin, both of which are homegrown feel-good chemicals which can only make us feel better.

3 – Getting Out

Being social is something we need to do. We can get both depressed and anti-social due to our chronic conditions. Some go “all out” as far as appearance: hair fixed, makeup, jewelry, and a dress. But I’ve never been one for being ‘dressy’ so when I go out I tend to be in jeans & a nice top. I’m not going out to impress, I am going out to have fun & enjoy myself.. But, I do tend to dress a little more sexy & with make-up when going to a club..

Some go out frequently. Personally, for purely social purposes, I go out once a week, maybe twice (without covid) . But, I also go out for Cub Scouts weekly which is different than social but is still getting out. I also get exercise – I walk weekly with my sister & our pups. We end up talking the whole time. I have also recently joined an exercise group that meets weekly which is also both social, but also exercise. Unfortunately, with my bff living out of town, & her also having fibro, we dont get to actually see each other that often even tho I have a key to her place.. I’d probably go out more if she was closer & she wasnt so busy with work..

So while we can & do get out, its not always a reflection on our health level. Sometimes we need to make accommodations. I’ve gone out to a bar, medicated on narcotics, to be with friends. (No, I wont drink) I’ve gone to Cub Scouts Day Camp the day after an unsuccessful ER visit, looped up on muscle relaxers & anti-inflammatories or MMJ. I had to go – I had half the equipment *&* the itinerary. Dont worry, there are other leaders because if I’m medicated, I don’t count for ratio. I’ve also usually had either a hot shower or preferably, a hot tub, when available, after almost any type of workout to minimize and even help prevent any residual issues I might have the next day or two. Unfortunately, there are still many times that I still need to cancel plans with scouting, friends, family & intimate relationships.

4 – Technological Activity

Technological socialization is all a lot of us have, especially with COVID. We tend to find typing on a keyboard or on text to be almost always easier. With the hermit life many of us live, we might also avoid telephone conversations because in & of themselves they can be stressful & exhausting. So when my whole body feels like death warmed over, but I’m usually more able to move fingers either on the laptop of cellphone. While a “activity” in no way suggests any other type of activity whatsoever, many people assume that because you are participating online that you are fully functional. Sometimes we express ourselves via social media just to stay sane.

If I post something non-health related or — shocker — something happy on social media or my blog, I wonder if others see it as me being “well,” which is never the case. Our illnesses are always, always there, even if we’re not talking about them at the moment. No matter how much we wish to ignore them, we would still prefer to make them go away.

5 – Announcements that Imply Activity

Many of us are creative people in some format even if is just colouring.. Due to COVID, many people have added extra creative outlets over the last 2 years.. But every new pursuit that is public in any form makes others wonder if, as mentioned above, people see those pursuits or accomplishments and think, “Oh see, she’s doing well.”

But you need to understand: I am on disability and I have no “real” job. My life revolves around creative outlets, medical appointments, cub scouts, health & wellness, Lilly, family, friendships and my social media & Blog. With my very messed up sleep schedule, I do dishes and laundry when I can, and attempting to keep both my pup Lilly and myself fed. Seriously. All of that is my every day. And as little as that seems to be, to my body, that is a whole freakin’ lot. And it gets overwhelming, and some days I can’t even do half of that.

But some days — or nights in my case — are better than others. And that healthy girl who lives buried in me somewhere is begging to come out and create, and sometimes I just have to listen. So when I post about the awesome stuff my Pack is doing, share images of my latest painting project, talk about my love of soccer, add to my Varage Sale store, or am chilling up at the cottage for a few days, all this is done either on a good day, or only take a portion of my day, but is the only activity.. What you see are ‘snips’, brief moments it time, a small glimpse into the parts of my life I want to share. And even then, some of those can be done while still laying in best, resting my body, but still having an active mind.

We are never fine. Whatever assumptions you make based on how we look, how we move, what we do, or even what people “think” we can do, the only thing safe to assume: we are always worse than you think we are

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The original post was first published here, While I have kept some of the content, I have also made multiple changes with my own feedback, comments & experiences.

The original author Kacie Fleming has learned about health and treatment options into the nearly six years since being labeled with fibromyalgia. She lives in North Carolina with her husband and spends her time working on her handmade jewelry.

What *Is* a Flare Like?

This is very hard to explain as each one is different.

A flare can vary in duration, intensity, symptoms, triggers

A flare can last for a few hours, a few days, a few weeks, or even months.. Possibly years..

A flare can simply be a temporary exacerbation of symptoms that can be treated reasonably easily through medication and rest. A flare however can also be a debilitating excruciating exhausting with a skyrocketing increase in symptoms.

A flare could be pain, fatigue, insomnia, significant cognitive impairment, muscle spasms or charlie horses, IBS/IBD inflammation, exacerbation of sensitivities to food, smells, touch, less severe symptoms include body temperatures fluctuations, nausea, RLS, TMJ, dizziness/lightheadedness, costochondritis, headaches or migraines, numbness & paraesthesia

I am not including depression in this list despite the fact that many will think that yes this is part of a flare. For some it may be but for me my depression is not related to the fibromyalgia so much but the limitations of the flare in physical activity, mental stimulation and socialization.

With all the symptoms listed above a pain flare is different, day by day, hour by hour, trigger dependent and with various possible causes, intensity.

For example, one person might have issues with increased migraines and fatigue.. Another might have a flare in IBS/IBD symptoms, or muscular pain or cognitive issues. No 2 are ever alike.

Recent ER Visits

A few weeks back, I was talking to my mom about my health and we were discussing one of my previous trips to the emergency room. The visit in question was due to mental health not physical but it’s still triggered a thought in my head.

I used to be a fairly regular patient when I lived in East Toronto.. At my worst I was in the ER at either Centenary or Scarborough General 2-3 times a month for quite a while.

With this conversation, I came to the realization that I haven’t been to the ER or the hospital since covid started, and the world shut down March 2020.

This means that I had not had to go to the ER for my pain at all for almost a year & a half! Personally, I think that’s pretty good!

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Before anyone tells me that a trip to the ER is pointless & they will just accuse me of wanting drugs and won’t take me seriously. I believe I’ve actually addressed this issue previously.

When I go to the ER, I’m not looking for narcotics. What I want is big shot of toradol and some sort of stronger muscle relaxant. What this does is it calms down my osteoarthritis which makes the rest of the issues significantly more manageable.

There is even one doctor there at Oshawa General who also used to be at Centenary where I used to go when I lived in Toronto. Because of being a frequent flyer when I was in Toronto, this physician knows me on sight, knows my likely issue, and will turn around and say “Toradol shot?” And he writes the order for me. I can be gone in minutes once I’m in the back when he’s there.

Food Choices with Fibro X

The one other thing that many Fibromites have is common, but varies greatly is MCS – Multiple Chemical Sensitivities.

MCS is considered, in the most part, an environmental illness – a condition activated by the things in the world around us . Possible triggers that set off people’s symptoms vary including tobacco smoke, auto exhaust, perfume, insecticide, new carpet, chlorine, and more. Other chemicals that can set someone of are also in food or beauty products like moisturizers, or facial cleaners..

But there are also chemicals in our food.. Some of those chemicals are pretty scary.. I’m allergic to a binding chemical in food, but its also in the adhesive in bandaids & the other is found in moisturizers.. So makes you wonder..

My MCS issues in the way of food are Xanthan Gum, Guar Gum & Carrageenan.. This limits my food so I cant eat:

• Ice Cream / Frozen Yogurt
• Breaded foods like Chicken fingers & fish sticks
• Sauces including mayo, bbq sauce & salad dressing
• Most dessert
• Most premade meals

^{Foods most take for granted that I shouldnt even touch}

I also react to certain products but i dont know why such as KD. The brand name Mac & Cheese does a number on me, but other brands dont.. Another example is Campbell’s Chunky Soup – Beef, but I can eat any other chunky soup by Campbell’s.

As you can see, I cant eat alot of pre-processed food.. Whats sucks the most is the Ice cream & desserts. Only ice cream I can have is Haagen-Dazs.

And yet every one is different. Some people react to sulphites, some to food dyes, and others are sensitive to certain products like milk but not cheese. It makes no sence but there it is.

My Scouting

The Who When Where Why & How I Do Cub Scouts

At age 5 my Mom enrolled me in Brownies, then I went up to Guides. I did one year of Guides then quit cuz I didn’t like the program, wasn’t having fun & it conflicted with my dance class. 4 months later Mom puts me in another Company where I did enjoy the program.

But, during this time, my older brother went through the Boy Scout program. For meeting nights when Mom was working & I was not old enough to be left on my own, I got to be present at Cub & Scout meetings. . I remember the real wolf head that they had for the cub totem. I remember playing Barbie’s in the gym change room while Cub or Scout meetings were going on. Being a girl I wasn’t allowed to participate, but I do remember sitting &: watching different parts of the meetings. I remember tagging along to the rifle range (again not allowed to be alone at home), but I was not allowed to shoot because of my age, but probably my gender too cuz it was still “Boy Scouts”.

So I kept on in Girl Guides, earning my All-Around Cord. Up to Pathfinders I went. I was on track, or even ahead of schedule to earning my Canada Cord until my leader refused to accept the paperwork, from another Guider, confirm that I had organized & implemented by own full weekend camp. So I quit & went to the Guide shop and bought it for myself. My next year, I was a Junior Leader for the Brownie pack I grew up on.

The next year, I was hedging about what to do.. & was chatting with my friends Chris & Joann. I asked what they were up to that night. Jo said homework, but Chris said he had a Venturer meeting at Samac, shooting rifles. First words out of my mouth “Can I come?” Followed by “How much is registration?” I haven’t looked back.

I continued in Scouting as a youth to age 26. I started leadership at age 18 the took a break for post-secondary, returning back to the organization to my original group. I it was my Troop scouts who gave me the name Koolaid.. & that is a story in its own..

Over the years, I’ve worked with 2 colonies, 3 packs, 4 troops, 1 company & in a Service Scouter role.

In my younger days, I preferred, as you can tell, working at troop level.. Unfortunately, due to health I I ended up completely withdrawing from Scouting for a number of years as I worked through my health & my relationship. After 10 years, I left that relationship which helped my health. I wanted to return to scouting, but I knew I could not physically function at the level needed for Scouts. My nephew, a scout, wanted to be an SiT (Kim/Keeo) so he & I joined the colony.. 2 years later he wanted to go up to cubs, and I went with him. After 2 more years, he chose to continue his SiT at the troop level.. I stayed in Cubs for 2 reasons, he was old enough now that I didn’t need to be with him. And 2, I had found my niche

So, what do I get out of it? Besides free range time with the troop? Hehe.. Ok – Serious now. I like knowing I’m helping teach the new generation. I like working with this level – they don’t have that pre-teen attitude that fully blooms at 12-14.. I like being looked up to, knowing I mentoring some be in some small way. I like that I can walk through the mall & hear a voice say “Hey! Koolaid!” Knowing that he (or she) remembers me , shows I *am* having an impact on these kids.. I like the activities we do. Many are the same as scouts, just not as advanced. I like having something consistent in my schedule. I know I always have something scheduled on Tuesdays & Wednesdays from 6:45-8 .. I like hearing the kids laughing, getting along, learning together, competing against each other and just having fun! I like how it makes me feel as a person – this is the shallow one.

My years in Guiding topped out at 9 years, but that does not include the years I helped at guide & brownie camps for my Goddaughters. I was not officially registered for theses events.

My youth Scouting years topped out at 10 years. My leadership years are a little more clouded.. Scouts Canada’s records say I’m on year 20 & with my Rover years, that seems about right..

There are overlapping years of youth & leadership years which is why the number doesn’t seem to match up. So, all told I have 32 years (including this one) within these two organizations.. With many more to come!!

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Yes, I realize I missed the how.. How can I do this stuff with Fibro.. *that* is another post.

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Edit: Due lack of leadership availability, my Wednesday pack has closed and has merged in with my Tuesday pack.

Food Choices with Fibro IX

Sugar is a kind of cellulose, that is to say, a material that offers energy for the body. This perk often appeals to people whose fibro symptoms leave them exhausted. In large amounts, sugar can pack on the pounds, causing fibro patients to experience even more pain. An article in the Journal of Pain found that overweight FM patients agonized more extreme symptoms, including sleep problems, stiffness, and pain. If you are yearning anything sweet, Batayneh says, go for the things having natural sugars, like a slice of fruit.

^{Sugar…Sweet, sweet sugar…}

i definitely agree that with being smaller does help with the physical stress on my body and significantly lowered my pain level.

While I have lost a shit-ton of weight, I still very much have my sweet tooth.. Yum!! Probably why I’m stalled for over a year..

Various Sweets

More Sweet Desserys.

Sensitivity

In doing a bit of research about chronic illness and the story “The Princess and the Pea” I found an article written by a woman talking about her sensitivities. One of them being being able to feel the pain but the other or another is being an empath and being sensitive to stuff around her.

Being an Empath: My first year in New York, I saw a therapist who worked out of her apartment. I’d visited her there many times. One day, I walked in, and the moment I crossed the threshold, I stopped dead in my tracks. Something was different. My eyes scanned the apartment looking for what had changed, and as someone who was called the princess and the pea for being persnickety and whatnot, I was very familiar with the precise placement of everything in that area of her apartment. But as I looked around, I realized that nothing had moved, yet I could feel an immense change in the space. My eyes continued to search for the cause, but they never found it. What’s wrong? my therapist asked. Something’s different. I can’t figure out what it is. She gasped a bit, and she told me: I didn’t move anything, but I decided to move, and this week I began emotionally disconnecting from the space. You must be able to feel it.I’d certainly felt something. It’d hit me like a thud. Perhaps her emotional connection had previously imbued the space with a particular energy? Who knows, but since that time four years ago, I’ve increasingly worked to harness the power of my sensitivity. The same sensitivity that drew me to choose my Grandpa’s high school yearbook from hundreds of books in a used bookstore. The sensitivity that warned me when something was wrong with one friend and told me when another friend would find a home. The sensitivity that allowed me to feel the mountains in the middle of New York City. And the sensitivity that allowed me to smell faulty wiring in the half bath of my parents’ home and sense its danger and beg my mom to call the firemen. It’s a good thing you called, they said, this would have started a fire at any moment.It’s really this sensitivity

Now given what she posted, I have to say I’ve had brushes to the other side myself… The most noticeable was the premonition I had..

My Premonition: In the Spring of 2001 I was living in Williston North Dakota, and commuting to work in Watford City.. One day on my way to work, I suddenly had a very strong and impactful image hit me while I was driving, so I had to pull over.. It was about my bff.. She and another friend were driving some place. My bff can’t drive, so she was in the passenger side. What the premonition showed me was the two of them getting into a bad accident. The other car made contact on the Driver’s side, throwing the friend clear. Their car however was propelled around a street lamp, causing my bff to die instantly. Needless to say, I stayed pulled over for about an hour, blubbering my eyes out. Intellectually, I know it wasn’t real, but it felt *so* real that I could not help having an appropriate emotional response..

What happened? In February of 2002, the unthinkable did happen. While not the exact same as my previous vision, it was still true. There was just one big change : It was not my bff & her friend, but my sister & her partner (she was a cop).. however the other facts were the same: getting hit in the driver’s side, the vehicle being spun, her partner in the driver’s seat getting thrown the vehicle wrapping around a tree instantly killing her.

While this is not the only time I’ve had this sort of thing happen, it was the biggest, the most noticeable and the most important one I’ve had.

Has anyone else had experiences like this?

Food Choices with Fibro VIII

Dairy products, unless lactose intolerant, for many people, whether or not they have FM, are lactose deprived and have gas and bloating that can slow them down after they eat dairy merchandises or drink milk. Try excluding milk based merchandises like yogurt, cheese & frozen desserts from your diet for some weeks to see whether your symptoms progress.

^{Milk, cream, butter, yogurt (natural and strawberry), cottage cheese and cheeses}

If you do feel recovering, look for calcium rich dairy substitutes, like soy milk, along with tuna, broccoli, and salmon.

The Princess & the Pea

For those not familiar with the story. See Below. It was also made into a movie in ’02.

^{The princess slept on a pile of twenty mattresses and twenty feather beds and still did not sleep well due to the small pee in the middle of the bed under all those mattresses .}

I am convinced that the princess in this story had some sort of chronic illness.. From the description, she could have any of the following: Ehlers-Danlos Syndrome, Fibromyalgia, CFS/ME, Rheumatoid or Osteo- Arthritis, Allodynia, Complex Regional Pain Syndrome, Sensory Processing Disorder (In conjunction with or due these other conditions.

The American National Library of Medicine says “Possibly the princess in Hans Christian Andersen’s ‘The Princess and the Pea’ suffered from FMS since chronic sleep disturbances are typical in FMS. These sleep disturbances have been attributed to a dysfunction in the systems regulating sleep and wakefulness resulting in loss of deep sleep. ” That can be said about the other conditions I mentioned as well..

If you do a search of “The Princess and the Pea, chronic illness”, you will get a long list of articles believing that the lass in the story wasn’t just ‘sensitive’, but had a chronic illness. While all of the conditions I mentioned above, it seems Fibromyalgia to be the most common conspiracy theory..

What do you think? Does she have a chronic illness? Which one?

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The Story – The Princess and the Pea

^{A pile of 40 mattresses with a pra under the bottom one}

Once upon a time, there was a prince who lived in a wealthy kingdom. When he had reached the proper age, his mother, the queen, decided the time was right for her son to find a bride.

The prince, however was determined not to marry just any girl, but that his future wife should be a “real” princess. So he traveled the world and searched in all the kingdoms and met with all the princesses, but he still wasn’t satisfied.

One evening there brewed a terrible storm, with thunder, lightning, and rain. It was really frightful! In the midst of it all came a knock at the town gate. The old king went to open it.Who should be standing outside but a young lass, and what a sight she was in all that rain and wind. Water streamed from her hair down her clothes into her shoes, and ran out in the heals.

She claimed to be a real Princess. Although no one believed her, she was invited in to stay for the night.

The queen decided to test the young girl’s claim of nobility – without saying a word, the queen went to the bedroom stripped back the bedclothes, and put a single pea in the bottom of the bed. The queen then took 20 mattresses and stacked them on top of the pea and took 20 eiderdown feather beds and piled them on the mattresses. Up on top of all these the princess was to spend the night.

The next morning when the girl woke up, the queen asked how she slept. “Oh very poorly!” she said. “I scarcely closed my eyes all night. Heaven only knows what was in the bed, but I was lying on something hard, and now I am black and blue all over my body. It’s horrible!”“

They saw at once that she must be a real princess when she had felt the pea through twenty mattresses and twenty feather beds. Nobody but a real princess could have such a delicate skin.So the prince took her to be his wife, for now he was sure that he had found a real princess