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

Could You Handle it? Constant Pain?

Yes, I live in pain every minute of every single day. It is the Nature of the Beast..

If someone tells you they have fibromyalgia or CFS/ME & are pain free, they are wrong. Pain free days do not happen. If someone is pain free they are either lying to you, lying to themselves or they were misdiagnosed.

Like all Fibromites, I have pain every single day. Some days is really great at 1-2/10, but it has been as bad as 8/10 for my kidney stones. Lately, I’m typically at 3 or 4.

The best I’ve been is a 1.. but a zero? No I have zero pain or painfree days.

^{I have Fibromyalgia. I live in sin every day. Yes, Every Single Day}

So, do I wake up in pain? Yes.

Do I walk my dog in pain? Yes.

Do I do groceries in pain? Yes.

Do I write my blog posts in pain? Of course.

Do I exercise while in pain? Ha – tricky one. Yes, if I can do so without triggering a flare.Do I snuggle up & watch TV or movies in pain? Yes.

Do I socialize in pain? Yup, otherwise I’d be a hermit.

Do I participate in personal adult extra curricular activities while in pain? Unfortunately, yes. There is 2 posts about this topic in the works.

Do do my Scouting in Pain? Yes, I do. Only one person in each group has any clue about how I’m doing Raksha 13 & I have become good friends through Scouting & Rainbow I’ve known grade 8 or 9, but through guiding & scouting.

Don’t I take meds to help with the pain? Yes, but he important word there is *help*.

Now think about this.

Would you be able to handle never-ending pain? Knowing that it will never, ever end? That it could flare-up & knock you out with, if you’re lucky, only a moment’s notice??

Could you handle the negative prospects, knowing that most Fibromites do deteriorate? It means you will likely get worse, not better.

How could you handle additional fibro symptoms like debilitating fatigue matched with bouts of insomnia? What about a loss of cognitive function where you can’t remember silly stuff like the phrase “tug-of-war’ during a game of Pictionary with the kids. How about feeling useless cuz you are unable to help your kid with his math homework because you don’t remember how it works – all you can say is the answer is wrong, but unable to explain why, made worse cuz you had a partial scholarship in Mathematics.

What about the other “smaller” symptoms? IBS? Thyroid issues? Sjorgens Syndrome? Sleep impairment? TMJ? Reynauds Syndrome? Muscle spasms or reoccurring ‘Charlie Horses’? Costochondritis? Muscle weakness? Myofascial Pain Syndrome? Migraines? Allodynia (touch sensitivity)? Chemical sensitivities? Light, noise or smell sensitivities? Restless Legg Syndrome? Paraesthesia?

Admittedly, you won’t have all of these all the time, but they can spontaneously come & go without warning. But is that something you can handle, with the never ending pain & fatigue?

Very few friends can identify how much I’m in pain. My bff can usually spot it a mile off. My sister & occasionally my Mom can tell by looking at me.. I have other friends & family who have learned some of the more obvious signs of higher pain levels.

So yeah, I’m in pain, even as I’m snuggled up in bed, relaxing & medicated. I am still in pain. Always.

Could you handle it?

Welcome to May!

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!!

Severe Myalgic Encephalomyelitis (ME) Day of Understanding and Remembrance

Tomorrow, August 8th, is Sophia Mirza’s birthday.

Sophia Mirza was accused of seeking attention, her family were accused of enabling her, and she was sent to a psychiatric facility where her health declined rapidly. Sophia died of severe ME in 2005 at the age of 32. The coroner’s report showed that Sophia had massive spinal cord inflammation at the time of her death, and that she died as a result of acute renal failure arising from the effects of ME.

Severe Myalgic Encephalomyelitis (ME) Day of Understanding and Remembrance  was started in 2013 as a response to Sophia”s death.

Unfortunately, Sophia’s situation is not unique.

17-year-old Gigi from the UK was hospitalized with severe ME, and threatened with being sectioned  – forced institutionalization – against her will to a psychiatric ward for her inability to eat, speak or walk due to severe ME. Gigi’s family was told to stop “colluding” with their daughter.

24-year old Karina was forcibly removed from her home in Denmark in 2013 because of her myalgic encephalomyelitis (ME) illness for “treatment”. Because her mental and physical health deteriorated so quickly from ME-induced neurological damage, severe over-medication, trauma as a result of her circumstances, or some combination of all three.. she became unable to communicate verbally.. and was limited to s wheelchair because of her “treatment”. These “treatments included cognitive behavioural therapy (CBT), graded exercise therapy (GET), occupational therapy and psychotropic medications, all have been debunked and since considered detrimental by most ME specialists. She was lucky and was released in 2013 under significant international pressure, back home with her parents.

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Myalgic Encephalomyelitis (ME) is a chronic, often severely disabling disease, that affects the autonomic nervous system, immune system, endocrine system, among others. It afflicts over one million people in the United States alone and as many as 17 million worldwide.  ME is a disease that robs individuals of their health, similar to untreated HIV. There are those that refer to ME as non-HIV AIDS – with good cause, as the disease can leave sufferers confined to a bed, with little capacity to fend for themselves.

With severe ME a person’s basic functionality is lost.. What would you do if you last the ability to complete any of the following basic tasks,: brush your hair or teeth, feeding yourself, going to ths bathroom unassisted, cleanliness – being able to bathe one’s self, being able to tolerate light, sound and/or touch, move unassisted in your personal space.

Many people, dare I say most, know someone who has developed ME. They done even know that because ¼ of ME, patients with Severe ME end up disappearing into darkened rooms and rarely seen. 

While I have ME & likely have since high school, my symptoms have always been relatively calm com pared to 25% who have been diagnosed with Severe Myalgic Encephalomyelitis.

August 8th is set aside for these people living their life with the most devastating of this deviating condition. It is these people we acknowledge today & honour their struggles as they live or in some cases exist with this disease. This day also for Awareness of the Severity of ME & the growing need to include the severe patients in current studies. Finally it is to remember those who we have lost both directly & indirectly due to Myalgic Encephalomyelitis.

**For clarification, this condition is also called Chronic Fatigue Syndrome.. it’s is often referred to as either CFS/ME or ME/CFS

She Saved Me!

In November of 2011, a little puppy was born. In February of 2012, she became mine.

Prior to us getting her, I’d had alot of issues. My relationship was severely toxic & abusive. I was no longer was in contact with close friends & family. My health was rapidly deteriorating & my disability made me almost house bound. My depression started going into overdrive & I did not deal well.

As a result, I have lost track of the number of suicide attempts I had over the first 5-6 years of our relationship. It was so bad that I wrote on my meds list “In the event of a Suicide Attempt Do NOT Let me go home”. I was on 5 different antidepressants & they were not mixing well either.

But my life Changed when in February 2012 when I was given a life to take care of. Lilly.

I now had a “reason to live.”

She became my world. She was 100% mine. My partner did close to nothing with her on his own. He didn’t feed her, groomer her, take her out. He did occasionally play with her, but I don’t think he ever loved her. But I did.

So despite the increasing toxicity, I was able to survive because I had her. I had to be around to take care of her. I honestly believe, she would have suffered if I was gone & left with him.

She was my world. She was the reason I got up in the morning – literally. I had to take her out for a walk in the morning to do her business.

My relationship came to a sudden end when his son overheard his Dad threatening Lilly’s life. Now I don’t know if the boy knew his Dad was talking about Lil, or if he thought the treat was towards me. Either way he called 911. My ex was arrested and charged with Uttering Death Threats I believe the charge was.

I took Lilly & moved back home to my parents despite their misgivings. I got counselling, months and months of counselling. I was able to focus on my health. I reconnected with old friends and made new ones. I managed to maintain friendships from the time I was with him despite him. I am so lucky to have both of my best friend’s back as two of the closest people to me. I’ve rebuilt my relationships with family, my parents, my sister & her family, my brother & his family.

I am happy, reasonably healthy, and alive. Thanks to her.