Endometriosis Awareness

Yes, I am rehashing from an old post but I’ve added alot more to it.

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 can be 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 rare 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.

Completely debilitating cramps

How does it differ from regular period pain? Lately there’s been pain simulator videos on the web by somedays.com. They use a tens machine to simulate period pain. Average period pain is 5-7. Endometriosis pain is usually a 9-10. Now, this is not a pain scale of 1-10 but the settings on the machine. Here’s one such video of a US State trooper.  He says he’d call in to work sick at 6, but made it to a 10. Here is a vid of some young health professional dancers. I love the expressions these guys make. One tapped out completely at 6, but the other two did make it to 10 – barely.

What else can happen? In addition to debilitating abdominal pain, there can be issues with infertility. Studies have shown that 30-50% of women experience fertility issues be it the inability to conceive, high risk of miscarriage or just the fact that for some it can really f*”kin hurt to engage in sexual activity .With tissues not being where they are supposed to be, the women’s reproductive system is turned into a war zone. 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, and other digestive issues. Other symptoms can include painful urination,  blood clots, bloating & water retention, shortness of breath, fatigue, depression, mood swings,  leg cramps, and other general body wide pain.

What if I think I have Endometriosis? Stand your ground with your doctor. Do not let him/her/they brush off your symptoms. A GP is not equipped or trained sufficiently to make this diagnosis. Typically, they try a birth control pill or two or three, or the patch and for some that will help sufficiently. But if it doesn’t, get a referral to a gynaecologist. Again stand your ground. If you believe you have endometriosis and  medicinal treatments like lupron and Depo-Provera don’t help. Push for a laparoscope if you can afford it.My Gyn did not believe I had Endo, but when I pushed for my lap, she found it all across my abdomen, so much so that she didn’t have long enough tools to excise it all.   Advocating strongly  for yourself will significantly reduce your time to diagnosis. From the time I first started having pain in my teens to diagnosis was  about 10 years, a typical duration.

The Spoon Theory & Chronic Pain

I shared the spoon theory in my last post here.

I’m sure you noticed that the girl in the story has the medical condition Lupus. While obviously not the same medical condition a lot of what she says – No, most – No, all of what she said still applies to anyone with a chronic medical condition.

With fibromyalgia and my other chronic pain conditions I also deal with the daily grind of the limits put on me by my medical conditions. Like Christine, the author, I have a limited amount of energy that I can use each day. Some days I start with more energy, more spoons. Some days I start with less energy, less spoons.

I hope this gives you a new understanding about what it is like to live with chronic pain and chronic illnesses like ours.

My next post is about The Matchbox Theory which I think is actually a little more apt.

The Spoon Theory

by Christine Miserandino.

My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.

As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?

I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn’t seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.

As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.

At that moment, the spoon theory was born. Read More.

Here is a link to the pdf.

More about the spoon theory in my next post

May

May is Fibromyalgia Awareness Month.

November is RSD/CRPS Awareness Month

RSD stands for Reflex Sympathetic Dystrophy which is an order term for CRPS which starts for Complex Regional Pain Syndrome. November is the awareness month for this multi-named chronic pain condition . See the images below for more information..

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May 12th

Today is May 12th..

On this day we try to spread awareness of three debilitating and chronic medical conditions. I have all three of these conditions & I have to say, they all suck.

FMS – Fibromyalgia Syndrome

CFS/ME – Chronic Fatigue Syndrome/Myalgic Encephalomyelitis

MCS – Multiple Chemical Sensitivities

May 12th is Coming

Each year on May 12th, we observe International Fibromyalgia Awareness Day. Globally, we also acknowledge Awareness for Chronic Immunological and Neurological Diseases (CIND), typically considered Chronic Fatigue Syndrome/ Myalgic
Encephalomyelitis (CFS/ME) and Multiple Chemical Sensitivities (MCS). This does include other conditions such as Multiple Sclerosis, Addison’s Disease, Lupus, Chronic Regional Pain Syndrome (CPRS), & Irritable Bowel Syndrome to name a few.

Fibromyalgia affects 2-4% of the population. For context that’s up to 13 million of the US population & 1.5 million of the Canadian population  It is a musculoskeletal syndrome and causes a variety of symptoms. Common to all Fibromites is chronic widespread pain and debilitating fatigue. Additional symptoms can include:

• anxiety
• depression
• migraines/chronic headaches
• irritable bowel syndrome
• irritable bladder
• insomnia
• hypersensitivity to cold/hot
• swelling
• fibro fog (inability to concentrate/focus)
• difficulty remembering
• numbness
• stiffness
• decreased energy
• noise, light and odor sensitivity
• skin sensitivity
• See a more extensive list here

Symptoms may come and go, lasting a few minutes, an hour, a day, a week, a month, or a year. While there is no cure for fibromyalgia, a variety of treatments and therapies focus on reducing the amount and frequency of pain. They also aim to improve sleep. Therapies such as exercise, massage, acupuncture, and chiropractic care aim to manage symptoms without pharmacological interventions. Prescriptions manage pain, improve sleep, and combat depression, too.

Chronic Fatigue Syndrome/ Myalgic
Encephalomyelitis (CFS/ME) affects ¼-¾ of 1% of the population For context that is up to 2.5 million of the US population & up to 300,000 of the Canadian population. It is a serious, long-term illness that affects multiple body systems. Symptoms of CFSME are severe fatigue, and sleep issues. Additional symptoms commonly include: post-exertional malaise (PEM), problems with thinking and concentrating, pain, and dizziness. Like fibromyalgia, symptoms may come and go, lasting a few minutes, an hour, a day, a week, a month, or a year. There is no cure and no real recommended treatment plans . Individual symptoms may be treated or managed and like Fibromyalgia, they may provide relief for some but not others. Coping strategies, like learning new ways to manage activity, may also be helpful in some.

Multiple Chemical Sensitivities (MCS) is a syndrome resulting from a reaction to environmental factors such as tobacco smoke, auto exhaust, perfume, insecticide, new carpet, chlorine, food chemicals an preservatives. Symptoms can vary extensively and can include:

• Headache
• Fatigue
• Dizziness
• Nausea
• Congestion
• Itching / Rash or hives
• Sneezing
• Sore throat
• Chest Pain
• Changes in heart rhythm
• Breathing problems
• Muscle pain and/ot stiffness
• Diarrhea / constipation
• Bloating & gas
• Confusion
• Trouble concentrating
• Memory problem
• Mood changes

Treatment typically is to avoid the irritant

AWARENESS DAY HISTORY

Fibromyalgia, CFSME, MCS Awareness Day was first observed in North America in 1992 in honour of the birthday of Florence Nightingale.

Why Florence Nightingale?

During in the Crimean War on the 1850’s with the English army, she established the training of women, organizing them to help care for the wounded soldiers, establishing the basis of modern nursing.

During the war while working on the front lines, Florence suffered a traumatic collapse which resulted in most of her life to be in debilitating chronic pain, often unable to walk or leave her bed. Documentation suggests her symptoms to be similar to fibromyalgia and chronic fatigue. 

SPREAD AWARENESS

To help spread Awareness of Fibromyalgia and these other conditions please use the following hashtags in your social media:

• #May12th
• #FibromyalgiaAwarenessDay
• #CFSMEAwarenessDay
• #MCSAwarenessDay

As the month of May is also dedicated to Fibromyalgia Awareness you can use these additional hashtags

• #FibromyalgiaAwareness
• #FibromyalgiaAwarenessMonth

 

Fibromyalgia Awareness Images

Some of these image are ones I’ve created, and they are marked. Some are not please give credit & refer to this blog at http://www.KelliAEllis.com

I created this image based on other images. if you use this image, please give credit & refer to http://www.KelliAEllis.com TY

I created this image based on other images. if you use this image, please give credit & refer to http://www.KelliAEllis.com TY

This was made by a friend for me. If you use this, please give credit & refer to http://www.KelliAEllis.com. TY

Spread Awareness

Tired? Me Too.

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.