Archive for the ‘Advocacy’ Category

Tired? Me Too.

April 29, 2022

Don’t you also hate it when, despite knowing how badly you struggle with fatigue, someone who doesn’t is always delighted to tell you, “Yeah, I’m tired too?”

Me too, and I’ll explain why. I fully understand that everyone is entitled to feel tired, it’s a way of life. I also understand that everyone has different levels when it comes to how much tiredness their body can take. However, if you’re a person who is tired because they went to bed two hours before their alarm, or a person who is tired because they were binge-watching “Grey’s Anatomy” for two days solid without going to bed (I salute your dedication by the way, just saying!), then your tiredness level and my tiredness level aren’t really the same now, are they? In my opinion, people who sit there claiming that their tiredness from burning the candle at both ends is the same as tiredness from illness are pretty much insulting every single chronically ill person out there. Obviously with strangers, it’s slightly different as we can’t expect them to carry their crystal balls with them everywhere they go. But, when it comes to our loved ones who know our situations and who know how fatigue affects our minds and bodies, that’s when, personally, it makes it seem that my feelings are less worthy.

So, how is chronic illness tiredness different than “regular tiredness?” Well, seeing as everyone responds differently to fatigue, I will answer that question based on my own personal experience. Tiredness due to my multiple chronic illnesses is a level of fatigue which involves me sitting on the toilet crying my eyes out because I am so tired. It’s when I have hardly been able to move around my house due to lack of energy, yet I’m still sitting on the sofa yawning my head off, and an extreme bout of nausea because I am just so tired. It’s being unable to have a conversation because exhaustion has sucked all of the energy out of my body; therefore opening my mouth would use up a lot of the limited supply of energy I currently have to work with because, you guessed it, I am just so tired.

What are we so tired?.There’s several reasons. We can’t get to sleep cuz insomnia is common. We can’t stay asleep. And because our body is constantly fight with itself trying to deal with daily varying levels of pain and other symptoms of our illnesses.

Unlike healthy people, getting an early night doesn’t fix my problem. Doing less activity doesn’t fix my problem.Getting more sleep at nighttime doesn’t fix my problem (and that’s if I can even get to sleep!).Despite being absolutely mentally and physically exhausted, I can’t sleep, even though I would love to (and nearly do) fall asleep wherever my head lands.It’s debilitating. It’s exhausting. It comes with the territory of multiple chronic illnesses (fibromyalgia, chronic fatigue syndrome, etc.)

So if someone you know with chronic pain, especially moderate to severe chronic pain, and the say that they are tired. They are likely exhausted on, or more more likely off their feet unable to do much We don’t like to complain but when we do, it’s gotta be big.. So please don’t respond with a flippant “Me too!” What you are dealing with is quite possibly very different from what someone with chronic pain is dealing with.

Endometriosis Awareness 2022

March 18, 2022

March is Endometriosis Awareness Month.

March is Endometriosis Awareness Month
March is Endometriosis Awareness Month

What is Endometriosis? In layman’s terms, it’s when the cells the are supposed to live in the uterus also live outside the uterus.

What does that mean? Well, it means those misplaced cells act like they would it they were in the right place. They have the menstrual cycle, but it’s on the bowel, on the outside of the fallopian tubes, uterus, ovaries, etc, on the rectum, on the bladder, on the kidneys, basically any of the organs in the abdomen. But not only that, these cell can migrate anywhere within the body. This includes more serious, but rate places like the heart, lungs, the spine, and the brain.

What does it feel like? It hurts!! Most women have a regular menstrual cycle. Some women have bad cramps and heavy bleeding..Us with Endo have horrible cramping, debilitating pain that last the duration of the cycle & for up to a week prior & after, and those cycles are irregular & erratic – some times lasting up to 2 weeks, sometimes with only a week, or days, in between. And remember, this happens in those cells that have meandered into the rest of the body, so not all the pain is necessarily in the lower abdomen

What else can happen? In addition to those fun issues already discussed there can be issued with infertility.. With tissues not being where they are supposed to be, the women’s reproductive system is turned into a war zone. And it can really f*”kin hurt to engage in sexual activity. Cuz the tissues are not where they are supposed to be, internal and things very easily get rubbed the wrong way. Add to that the common co-morbidity with Irritable bowel syndrome which in and of itself sucks.

Things Got Better

December 21, 2021

Since my last post, the new nurse Christine was able to get my meds to where they were supposed to be for the most part. I will be eternally grateful for that.

Unfortunately, real damage was done in the way of pain.. Fortunately, I do see Dr Sith tomorrow.

But the brightest moment of this 72-hour hold was today at about 6 in the evening when I heard a voice. It was a woman’s voice. She had a Jamaican lilt to her voice. I placed her immediately as being *my* psychiatrist I walk towards her voice and she was in a room talking with a patient but she looked up at me and despite the mask and my weight loss she recognized me immediately and then saw a surprise on her face.

But she’s my doctor and I’ve been in her practice for almost 5 years. She is familiar with what’s going on with me and my history so I was super comfortable at that point. I took a deep breath and was able to relax.

A half an hour later, she and the nurse came down to my room and we discussed what caused me to come into the ER.. She wanted to know how I got to the ER.. We talked about how I was feeling and feeling out my.state of mind.. She asked me why I was so animate about leaving as soon as the hold was up.. She reacquainted herself with my home situation.. We discussed my weight loss – cuz it has been 2 years since she’s seen me & I’m definitely smaller. She asked me what I thought she could help with..

Apparently, she liked what she heard and she discharged me. WITH a meds change, which is really all I wanted.. That and to actually have an appointment set up with her which got done earlier as well. 🙂

Am I still pissed about how things went down?? Definitely. Am I happy with the final result? Absolutely!

Crash & burn & burn some more.

December 19, 2021

I went to Lakeridge Health to get help on Friday. But for the most part I’ve been screwed.

It’s Sunday & other than a 15-20 minute chat with the doc in the ER, I’ve seen no physician. The on call shrink who prescribed my meds has completely screwed me over I missed THREE doses of my antidepressant – which given that I’m here for mental health is excruciatingly bad. Finally back on as of this morning I was given a muscle relaxer & a Tylenol three on Friday in the ex for my fibro and that’s it.. nothing since.. but she did prescribed a Parkinson’s med for muscle spasms – huh? So my pain is skyrocketing… & It’s not freaking muscle spasms. & Have not been given any arthrotec (antiinflammatory) that I also take.. You should see my ankle from hurting it almost 2 weeks ago.. it’s exploded cuz I’m not treating the swelling

I have finally gotten the last nurse on the last shift to finally reach out to the doc to get something prescribed & his replacement is actually being more diligent & she has followed up twice now..

Then add to that my sleep.. while long, there was very little deep or REM sleep, so not much healing sleep here either

But God. This is the worst experience. Worse than being sent back home with my ex after a major OD (my ex was why I’d OD’d).


I dont know if I’m going to be able to get my shopping done for Christmas, let alone my baking.


This is supposed to be helping me It’s not. It’s making me worse

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.