Archive for the ‘Understanding’ Category

Fibro Friends, IRL

November 2, 2021

It’s interesting to note exactly how many friends I have, real, in-person, face-to-face local friends that I have with Fibromyalgia.

When I first started having symptoms in the mid-90s, I’d not heard of Fibromyalgia let alone know someone with this condition.

I only found out about fibromyalgia through, unfortunately, Dr Google. Few doctors had even heard of it then. Many did not believe it existed. Few had any idea how to treat it..

Jump ahead a few years..

  1. First person who was a friend of mine is Billy Jo. Her and I met in a mental health workshop in my local hospital. We met because of mental health & connected over of common physical health. We have been friend for.. 8-9 years now…
  2. My BFF was also diagnosed with fibro about 7 years ago. Due to an abusive relationship I was estranged from her while she went through her diagnosis. However, because she knew of my struggles and issues I’ve had getting diagnosed & treated, she had a good idea of what the process was & how to get it sped up.. my diagnosis took 13 years.. Hers only took 3-4 years.
  3. I had left the aforementioned relationship approximately 5½ years ago. This was just in time for my high school reunion.. One of the people I reconnected with another girl named Jo.. While we were not friends in high school we did know each other and we have to come friends in the here and now. I think part of the reason why we connected so well was because I understood and she did not have many other friends let alone ones who got & understood the issues with Fibromyalgia.
  4. Shortly after that reunion I connected with a lady in Newcastle who is my twin. No, we look nothing alike however there are so many other similarities. We were born within two weeks of each other, we both went to the same high school, we have almost the exact same list of medical conditions including Fibro, we react well to the same medications as well as an overlap in personal interests beyond our health. So we met about 2 years ago, shortly before covid and we’ve connected over these similarities, but also over our differences.
  5. Growing up, the neighborhood kids down at the end of the street were friends.. The oldest had a big gap between herself and her younger siblings so she hung out more with my older brother, his friends and some of my friends as she was a few years older than me but many years older than her siblings. After I moved back to Oshawa we eventually started connecting again a few years back. She also has Fibromyalgia.

Its interesting how many people have fibro that you may not even know about..

Stuff That Doesn’t Mean We’re Okay

October 29, 2021

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


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.

Fibro Sucks! But My Friends Don’t!

May 31, 2021

so we have finally reached the 31st of May, the final day of fibromyalgia Awareness Month. I know I’ve been posting a little extra and almost exclusively about fibromyalgia this month but but else would I do? LOL

what I would like to thank all the people in my life who support me. I made masks for those closest to me as well as myself. I would like to thank each and every one who wore these masks & I hope will continue to wear them until we no longer need them.

This lad is on of my guy friends whom I am fairly close to, but I was surprised when he said he wanted a mask. Apparently he knows others (including 2 mutual friends) with Fibromyalgia.

Tony.

The only one I made a mask for who I do behave an image of is my nephew cuz he couldn’t find his (not surprising, cuz his mom’s wearing it!) But my sister, her 2 daughters, and my Mom & Dad. I thank my family for their support

Cassie & Kyah, Wendy, Dad and Mom

My best friends and their partners.. I’ve known both Catherine & Gerry since high school. I’m lucky to have maintained their friendships after 30 years. I thank them & their partners. Cath’s masks read “I wear purple for my BFF” & “I wear purple for ME”.

Catherine & Brett and Sara & Gerry

As many of you know, I’m involved in Scouting & I had some of my fellows outer request masks as they know how much it impacts my daily life.. I worked with Rainbow 13th directly for 2 years in Beavers & she is our outgoing group chair for one group. Raksha 13th has worked with me at Cub level for 3 years now& is out incoming Ng chair. She has seen how it impacts me and the improvements I have made over the last few years. Rainbow 1sy, well.. I’ve only been working in tandem with her since Covid hit & we initially amalgamated the groups, but like the bffs, I’ve known her since highschool and we did Venture Scouts together as youth.

Rainbow 13th (Charlene), Raksha 13th (Jen) & Rainbow 1st.(Jenn)

& I support me. Some days I have to remember that.

i have 4 masks.. 2 that say Fibromyalgia Awareness, but different patterns.. one that states “I wear purple for my BFF” (cuz my bff has fibro too) & “I wear purple for ME”. Mine, I will have in regular rotation – good thing purple is my favourite colour..

4 different days 4different masks.. & Yes, each has been worn several times over the last few weeks. Very rarely was I not in a fibro mask. & If not, I had purple butterflies!

So everyone who supports someone with Fibromyalgia, on their behalf, I thank you. Whether it’s doing our groceries wearing a mask for Fibromyalgia Awareness or just checking in to make sure we’re ok,, we do appreciate you & your support.

Thank You!!

Am I Better Yet?

May 27, 2021

Better than what?

Am I better than yesterday? Or Last Week? Last Month? Last year? Maybe, but that is not what you are asking, is it?

You are wondering if I still have Fibromyalgia or CFS/ME, or one of the many other invisible illnesses like Lupus, or Crohn’s disease. The short answer is No.

There is currently no cure for these debilitation yet chronic medical conditions. While there are treatments that *can* improve one’s quality of life, they do not work the same with everyone.

Now some people who are familiar with these conditions will ask that but mean something different. They are asking how one is, wondering if today is a good day compared to the bad day from last week.

Are you Better?? The connotations of the word better are eliminated by using a word like improved.

My answer to the later question uses the word “improved” not “better”. It clears things up because of the lack of clarity & assumptions made when using the word “better”.

Myth Debunked II of VI

May 9, 2021

IT’S AN UMBRELLA TERM

Yes and No.. Referred to as both a ‘wastebasket disease’ and ‘umbrella term’, fibromyalgia is often seen as a catch-all for symptoms that don’t fit other conditions and can’t be easily explained. Seeing fibromyalgia as a trashcan diagnosis links with the assumption its not a real condition in and of itself.

Yes

Fibromyalgia encompasses a myriad of symptoms, though many people also have additional diagnoses to account for other problems they’re experiencing. I don’t experience fibromyalgia in a vacuum; I also have CFS/ME, Osteoarthritis, Joint arthritis, Depression Hypothyroidism Endometriosis, IBS and Myofascial Pain Syndrome. and so on. I was diagnosed with fibromyalgia in 2006 by a rheumatologist who said I had “Symptoms consistent with Fibromyalgia” was further confirmed with the trigger point test. I even had to correct a doctor who didn’t know exactly when the points are. As a patient of Dr Bested at the Environment Health Clinic and eventually her private practice, she had me running tests out of the wazzo. The results just confirmed yes I have fibromyalgia. I was also ‘diagnosed’ with CFS at that point, but I know if been dealing with even longer than fibro.

No.

Because fibromyalgia can’t be objectively tested and measured, it’s a challenging diagnosis for many doctors to accurately reach and it’s made harder still when healthcare professionals are either sceptical, unsupportive or totally disbelieving of either fibromyalgia itself or the symptoms you’rel presenting them with.

Although it can involve various symptoms, the current list I’m aware of for possible symptoms is over 300 long. Any of these can be experienced differently by each person.

Fibromyalgia is a distinct condition. It may overlap with other illnesses but classic symptoms are still typically prevalent.

Be Cognizant of Your Behaviour.

May 3, 2021

I’ve mentioned this before and some may not be clear with what I mean. I’m not talking about being rude or nasty, but that is unacceptable aswell. I’m talking about the things you are not subconsciously aware of.

Touch.

Casual touch can be excruciating..

This is probably the biggest issue. People touch people. It happen. Even when sometimes you are trying not to. Like on a crowded buss or subway car, especially during rush hour. There’s also touching that you may not be aware of. An intended gentle affectionate touch like a hand on the shoulder could easily cause excruciating pain. While you can’t help the contact on a transit system, you can be aware of how you express affection to someone with Fibromyalgia or any other chronic pain condition. The easiest way to know is to simply ask.

There are times when you will forget. My mom forgets and I’ve had fibromyalgia for over 20 years & chronic pain for another 10 before that.. So if you forget, if you remember as your doing it or right after, apologize. If they mention it to you later, apologize. If they don’t accept your heartfelt apology, then they are just being jerks. But if they don’t comment, then either you likely had very little impact, or they just don’t feel comfortable to discuss it with you. Only you’d be able to tell.

Scent.

There are many scents people react to. Anything from expensive perfumes to little Jimmy’s upturned stomach. Many people with Fibromyalgia, Fibromites, do react to various smells may of them synthetic. As a result we generally can not be around the source of a scent.

Longing Perfume. My very first non-allergy reaction to a synthetic substance.

Perfume, even the expensive stuff is an excellent example. While you may think you are smelling like the bee’s knees, but in fact you could be harming someone else’s quality of life. Other examples include moisturizers, bath products, tobacco smoke and laundry soaps/fabric softeners. Reactions are similar to an allergic reaction and while not anaphylactic it can cause anxiety which could result into a panic attack. So if you must make yourself smell ‘pretty’, Please use a light hand cuz the person with fibro who rides up on the elevator with you at work, would very much appreciate it.

There are some more natural scents that tend to both us as well. I am fortunate that I don’t react poor to natural scents, except onions but that may have more to do with my aversion to onions.. 😆

Sight & Sound.

While not as much you can do about this, just be aware that many of those with fibro also have sensitivites to bright lights & loud noises. So no going into their room to wake them up with opening the blind & the window with a 20 piece band. That could severely thaumatize them – I know it would for me.

Taste.

Well there’s not a lot you can do suits you are not actually feeding them or forcing food down the throat.. lol.. You can simply be aware and take into consideration food sensitivities if you are aware of them. The last thing anybody wants is for someone to spend the evening in the bathroom, stinking it up.

General rule of thumb for me, the more natural, the better.

Welcome to May!

May 1, 2021

Welcome to Fibromyalgia Awareness Month!

Wear Purple for Fibromyalgia Awareness Month

What is Fibromyalgia? Fibromyalgia is a chronic pain condition characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues. The current theory behind why is that fibromyalgia amplifies painful sensations by affecting the way your brain and spinal cord process painful and non-painful signals.

Why is Awareness Important? Because there are many incorrect assumptions and false facts about this disease & the people who have it. People need to know that just because you can’t easily see my pain on my fatigue or digestive issues or cognitive issues or.. etc.. that does not mean it is not there.

Why May? Initially, Fibromyalgia Awareness Day started exclusively on May 12 – the birthday of Florence Nightingale. Why her? Not only is she the mother of modern nursing, it is believed that she has Fibromyalgia…After returning home from the Crimean War in 1856, her diary entries are suggestive of the classic pain and fatigue condition that we have all experienced. So May 12th became the date for Awareness for Fibromyalgia, ME/CFS, & MCS.. But why or how did they get that extended to the whole month? I have no clue tbh. .

Why should you care? Approximately 2 to 4% of the population has fibromyalgia. In the US, that’s about 6 to 12 million people, In the UK that’s about 1⅓ to 2⅔ million people. In Canada that’s about 750,000 to 1.5 million people. That is alot of people. So, if that is the stat for the entire world, that means there are 153 to almost 307 million people worldwide with fibro..That is A LOT of people.

So what? That’s still not me. So why should you care, even with those stats? Well, anyone can have Fibromyalgia. So your son, your daughter, your sister, your brother, your cousin, your friend, your mother, your partner. Anyone of these people could get fibromyalgia.. That also means if you know 100 people, 2-4 of them will have Fibromyalgia. So, you *do* know someone with Fibromyalgia.

How? Simple. Ask questions. Do some research to find out a little bit of fact (not fiction) on fibro. Be cognizant of your behaviour. Support those in your life with this condition – off help & let them know you believe them. Wear a purple ribbon to show your support Wear purple!!

Take Care! Self Care..

April 5, 2021

Self care at this time is especially important, particularly with the limitations & 1 month lockdown here where I am.

Take care of yourself. You can’t help your kids, spouse, friends, other family if you are not functional. Like they say on flights, put your mask on first before you help others. It’s not selfish, it’s taking care of yourself you are able to help others..

Seriously!! Go drink some water or make yourself some tea. Put on your favorite sweater or take a really long shower. Talk with someone or just scream to vent your negative feelings. Light some candles or spray your favorite perfume. Get up – shower, dress, makeup will give you a sense of accomplishment even if you go nowhere. Watch a favourite television show or movie. Make yourself your favourite meal, or order in for yourself. Check online resources – support groups, information,links. Be aware of who you are & how you feel. Take a walk or find an online yoga class . Learn something or try something new. Wash your face or have long relaxing shower/bath. Give yourself a facial or paint your nails. Stop for a moment and do something that makes you happy.

Most importantly, Breathe.

This life you live is a blessing and it’s way too short to be stressed over all the time.Take time for yourself.Even if it’s just two slow deep breath’s and recognize what you can do for you.

Some Disabilities Can’t be Seen

March 19, 2021

Not all disabilities are visible! In fact, the majority are invisible.. Here is a ist of many of the conditions that are not readily apparent & are ‘invisible’. This list is by no means exhaustive

  • Chronic Pain
  • Arthritis, both rheumatoid and osteo.
  • CFSME or MECFS
  • Fibromyalgia
  • Mental Health including but not limited to depression, anxiety, PTSD,, bi-polar, & schizophrenia…
  • Sleep disorders including sleep apnea RLS and TMJ
  • Diabetes
  • Epilepsy
  • Digestive issues such as Crohn’s, Celiac, Colitis, & IBS,
  • Endometriosis
  • HIV or AIDS
  • Chronic migraines
  • Lupus
  • Lyme disease
  • Multiple sclerosis or MS,
  • Severe Food & Chemical Allergies including Gluten.
  • Renal failure & heart failure
  • Brain injury including concussions, stroke & meningitis
  • Spinal Injuries
  • Fetal Alcohol Spectrum Disorder,
  • Narcolepsy,
  • Repetitive stress injuries like tendonitis & carpal tunnel syndrome
  • Learning disabilities like dyslexia, ADHD, ADD, Dyscalculia, Dysgraphia & Processing Deficits
  • , Ehlers-Danlos syndrome,
  • Myasthenia Gravis
  • Deafness, Blindness, Hearing loss, Speech impairments
  • Autism

Temporary Invisible Disabilities include:

  • Surgery
  • Severe Muscle Strain/Sprain
  • Pregnancy
  • Episodal mental health conditions
  • Severe infections

I Am Grateful

August 25, 2020

I know my last post was not a hugely positive one. Unfortunately I just needed to vent about what I was seeing around me. But there are many many good things that I am grateful for and they are bigger and generally more important than the issues I discussed previously. . So today I want to tell you the things I am grateful for.

Family: After several years bouncing in and out of a toxic rekationship that estranged me from everyone, I left permanently after he was finally charged. Despite great trepidation and concersn from my family, they agreed to let me stay temporarily, expecting me to go back yet again. But with their support & others listed me below, I realized that I was hurting myself & them with my behaviour. I have since rebuilt my relationship with my parents, my sister & her family. I even have some semblance of a relationship with my brother.

Geeze.. I’ve only written one & I’m already in tears as I write this!

My Best Friend: I was absolutely horrible to this woman whom I have been friends with since high school . Because of the control my ex had over me, I was a complete and total bitch to her. My ex even contributed, I found out later, to the failure of her lucrative homer business. After she had a significant health scare, I was *allowed* to visit her. We slowly started to rebuild a relationship.. I even crashed on her couch for a few month during one of the times I left him. She was, I don’t think she realizes, had a significant impact on getting my head set forward. If this has not been re-established, I may not have let the police in or let the charges be filed. She was there for me when I needed her. It took about 4 years since we reconnected for her to again call me her best friend. She never realized how important that was for me to hear her say that. I am not sure she even knows now.

Man.. another doozy.. I’m sure that there’s gonna be edits cuz I can’t see through the tears. (& more years in the edit.)

Those who know us will get it.

Durham Family Services: Because of my income level, I was eligible to access the counseling services through the region (kinda like a county in the US) The woman I met, Fran, helped me through alot that first year I was back. I worked on my self esteem, learned some new coping skills and started to love myself again.

YMCA of GTA: This is actually my gym. I am grateful for my gym because I was able to get healthier and loose weight. I also has alot of social interaction there with people & started making friends

My Lilly: Yes, I did do a blog post about how she’s helped me, but I am still forever grateful for her. Whether she knows it or not.

Friends: Old and new. I’ve reconnected with alot of people in my past like in the post about three’s, but others as well.. Add in the new friends I’ve made since I’ve been back, plus the few I managed to keep from during my estrangement. While I may or may not maintain these friendships, or I could get something new from them remains to be seen, but just having a larger social circle is helping me. Which brings me to..

Scouting: I know most people wouldn’t get this, but before my relationship, I was an active Scouter. Now I was dwindling down on what I could do, but I did enjoy it. Flash 8-10 years later.. I’m back. And my eldest nephew wants to become a Junior leader)SIT with the Beavers. We (my sister & I) thought this would be a great way for me to reconnect with people & to build something with my nephew. . So I started as a “One hour a week” Scouter. Bringing my nephew every week… Now, with an awesome team of Scouters & friend (again, both old and new) I’m a major role in the Cub section (age 8-10).. I’m able to work with the youth, yet still be able to pace myself & no over do it.. much.. Unfortunately, I won’t be able to return to troop level and do that. Fortunately, I’m actually enjoying working with this age group.

International Symbol of Scouting.

My Medical Team: To the non-judgemental support from my current medical team, I am grateful. I am now on a positive Health Care Journey. With their help, I’ve managed to improve my health . I’ve lost weight, I’ve become more fit. I’ve come off alot of medications I really did not need, and supported me through addiction, tho no one knew at the time. I know I will never be healthy enough to return to work on much more than a casual part-time basis, but I am able to live a decent life despite fibromyalgia & my 6-bilkion other health issues.

This isn’t even going through the little things I’m grateful for.. The sun on my face, The lake at the cottage. Having a car to drive.. To have a regular income. To smell the flowers.. For being able to hug people (yes, only a special few right now). For privacy. For Fun. For freedom. For Love. For painting rocks. For exercise. For healthy outdoor spaces.. & you, still reading my post!!

I’m grateful for itvall.. & to those I can thank, I thank you from the bottom of my heart!