Archive for the ‘Advocacy’ 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..

Myth Debunked I of VI

May 2, 2021

IT’S A PSYCHOLOGICAL PROBLEM

Fibromyalgia is a real condition affecting the physical body; it’s not “all in your head”. The notion that fibromyalgia is a psychological problem and not a ‘real’ physical condition is sadly still too common and can be incredibly insulting. While the cause is not truly known, some can pinpoint when it began or what they think may have triggered it. But many others can not. We *believe* my fibro started due to Mono in college.

There will be instances where the mental and physical correlate, where the mind-body connection is a two-way street. Some believe mental disorders may be precursors for fibromyalgia in some cases or that mental illness may make a person more exposed to developing such a condition.While yes, I do have mental health issues, they started long before I had fibro symptoms plus we do know the instigating factor that started my mental health issues.

Most people with fibromyalgia are experiencing physical illness with biological abnormalities, which may then negatively affect mental health as a result of the impact to their physical health, work, relationships, lifestyle and so on.

Fibromyalgia is a real physical condition, not an imagined one, with real physical consequences. It has been acknowledged for centuries but was first classed as a mental disorder, before becoming viewed as a rheumatic disorder by the early 1800s. It was given the name ‘fibromyalgia’ in 1976, derived from the Latin “fibro” (relating to fibrosis tissue) and the Greek “myo” (for muscle) with “algia” (pain). By 1990, diagnostic guidelines were implemented by the American College of Rheumatology and the first prescribed medication was made available by 2007.

Recent research has been increasingly revealing of physical markers of fibromyalgia, such as increased blood flow among certain regions of the brain, low levels of the hormone somatomedin C, low levels of the muscle-cell chemicals adenosine and phosphocreatine, high levels of the neurotransmitter ‘substance P’, and dysregulated blood blood cytokine and chemokine patterns.

What Does a Disability Look Like?

April 26, 2021

According to the World Health Organization, disability has three components:

  1. Impairment in a person’s body structure or function, either physical or mental. Examples include loss of a limb, loss of vision or memory loss.
  2. Activity limitation, such as difficulty seeing, hearing, walking, or problem solving.
  3. Participation restrictions to normal daily activities. Examples include working, and engaging in social & recreational activities,

So as you can see, not all persons with disability have necessarily have a physical component. Additionally, there are medical conditions and disabilities that are not visible including diabetes, lupus & fibromyalgia.

I’m a good example of that in that I have fibromyalgia and other issues but I don’t use a cane at the moment. As a result, I don’t look like I have an impairment . Pain is invisible so they don’t know and cannot tell that my pain level is a 1/10 (I know, very funny) or 8/10 today.

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

International Women’s Day 2021

March 8, 2021

March 8,1917 – Women gained suffrage in Soviet Russia. March 8 was adopted by the feminist movement circa 1967. The UN began celebrating the day in 1977.

The purpose as I understand it, is to celebrate women. To support and build each other up. To celebrate the progression of equal rights, and gender equality.

In some countries the official flower of Women’s Day is a Yellow Mimosa

The UN’s Theme for International Women’s Day 2021 is “Women in leadership: Achieving an equal future in a COVID-19 world”

Endometriosis Awareness Month

March 1, 2021

March is Endometriosis Awareness Month.

Endometriosis is a chronic & painful gynecological medical.condition . It occurs when endometrial, the tissue that grows inside the uterus, grows outside of the uterus, anywhere in the human body.

In most cases women with Endometriosis the endometrial cells are located within the abdominal area including bladder, bowel, uterus, fallopian tubes, ovaries, etc. Unfortunately it can be found elsewhere in the body including musculature, and other organs including at worst the heart, lungs, or brain. Fortunately endometriosis occurs only on those last three locations on a very very rare occasion.

Examplesof Endo Symptoms

Typical symptoms of Endometriosis include, but not limited to

  • Painful Menstruation
  • Excessive Bleeding During Menstruation,
  • Shortened or Irregular Menstrual Cycles
  • Back Pain
  • Painful Sex
  • Infertility
  • Painfull Urination especially during one’s period
  • Painful bowel movements especially during one’s period
  • Sensation that your insides are being pulled down lower in the abdomen
  • Fatigue
  • IBS either constipation, diarrhea or both
  • Spotting or bleeding between in typical menstral cycle
  • Nausea and vomiting,
  • Pelvic pain

This is by no means an exhaustive list, but these are the highlights of a woman with “typical” endometriosis..

Check ibacklater to see my posts concerning treatment, my atypical endometriosis.and my experiences with treatments.

Bell Let’s Talk 2021, Final Tally

January 29, 2021

On Bell Let’s Talk Day, Canadians and people around the world joined in to help create positive change for people living with mental health issues. Thanks to your actions, Bell will donate more to Canadian mental health initiatives.

With 159,173,435 interactions, Bell Canada with donate $7,958,671.75 to Mental Health initiatives across Canada!!

#BellLetsTalk, #BellCause

January 28, 2021
#BellLetsTalk – #BellCause

Today, with your support, Bell will donate towards mental health initiatives in Canada .You do NOT have to be Canadian or in Canada to participate.

For Bell customers, 5¢ is donated for every phone call & text message (but not iMessages) of the Bell network.

For every tweet and retweet using #BellLetsTalk or #BellCause Bell will donate 5¢.

For every video view on Twitter, Facebook, YouTube, Instagram, Pinterest, SnapChat & TikTok, Bell will donate 5¢.

For every video uploaded to TikTok using #BellLetsTalk or #BellCause, Bell will donate 5¢.

Every time you use the Bell Let’s Talk Snapchat filter Bell will donate 5¢ 

Each time you use the Bell Let’s Talk Facebook frame Bell will donate 5¢ 

International Day for Disabled Persons

December 3, 2020

December 3rd 2020

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

Newly Diagnosed? Here are some thoughts for you.

November 9, 2020

Fibro can get you down so much. It can also make life so difficult. But it also brings people together, raises awareness and gets people the help they need – but you need to ask 😉

Here are a few thing to keep in mind to help you on your journey…..

  1. Don’t feel guilty. It’s not your fault. You did not cause this.
  2. With Fibro our lives have changed drastically… Don’t feel bad about not being the person you used to be – it’s not your fault…. Try & embrace who you are becoming – the new you.
  3. Housework will always be there tomorrow – but your time, love, experiences won’t be..
  4. Don’t worry about yesterday as it’s gone. Tomorrow hasn’t come yet so enjoy today, however you can. That might be having a bath, taking meds so you can chill out in front of the tv, going for a walk, or whatever you enjoy..
  5. Never ever feel bad about having to rest. This condition is very stressful on our bodies and with poor sleep we got very little healing sleep, so it’s no wonder your exhausted & hurting.
  6. If people want to know how to help you and what is wrong, they will do research. However, you can point family and friends in the right direction by sending them a link to online sites. ButYouDontLookSick.com has the spoon theory which while for another condition, also applied to Fibro.
  7. ENJOY THE GOOD DAYS! But don’t do too much! Took me about 20 years to understand how to pace myself!
  8. Not everything will work. It is a hit & miss process finding out what combination of diet, activity and medications works for you. For example, my bff swears by Gabapentin but I found it exacerbated my symptoms. I am getting great benefit from medical marijuana, but another friend got zero benefit..
  9. There are a ton of online support groups for Fibromyalgia & chronic illness.. Join one or two.. or six… Most others in these groups are like me & are here for you any time you need to chat – that’s one thing I really love about these groups..
  10. There is NO CURE. Ignore anyone who says they were cured, especially if they are trying to sell something – These people do NOT care about you. Or they are in a remission & delusioned in thinking that they are cured.
  11. Some days will be good, some bad and there’s not necessarily anything you could have done to prevent .
  12. This condition waxes and wanes, so while there is no cure, it is possible to improve.. it won’t last as your disease progresses.. Most people once they figure out what works do not deteriorate. I myself am currently bin a form of remission, with pain levels low, but 10 years ago I was bedridden.. Lots of changes over a long time helped me there.. So there is the possibility of improvement & remission with Fibro. I’m just enjoying the increased functionally & lower pain levels while I can.
  13. Flares happen. Sometimes there is nothing you can do to prevent it.. Myself, I’d say 50% of the time I can tell I’ve overdone it & a flare comes on.. The other 50% is unpredictable.. and yes, despite the semi-remission, I still have flares just not to the extent & frequency as I used to.. For that I am eternally grateful.
  14. Above all, take care of yourself and help yourself to feel better. Other people can wait 😉