Posts Tagged ‘Fatigue’

The Princess & the Pea

October 1, 2021

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?


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

Following Doctor’s Orders

August 27, 2021

Previously, i had posted about my pain physician limiting my physical activities – not allowed to go to Cub/Scout camp. . I wrote about why & here’s a quick summary from the post

My pain was creeping up and Iwasn’t doing anything to rest. After spiking again last weekend, I had a regularly scheduled appointment with my pain doc. She reviewed my comments & my paperwork and we had a discussion She said that I was overdoing it & if I kept pushing I was going to significantly hurt myself, possibly slamming right out of my semi-remission. So, she said “No, you are not to go.”

My Pain Doctor *ordered* me to not go to Cub/Scout Camp.

So my Doctor said no, & I’m glad she did! Cuz she was right.

Last Thursday I helped the Howlers clean off the canoes so they could use them. (We don’t wanna contaminate the algae or other slime or bugs of one body of water to a new environment)

On Friday afternoon I helped get everyone off, including the trailers for the canoes & equipment.

Cubs At Camp

On Saturday, I finally woke at 10am on 6 hours sleep cuz my pain was keeping me up. Unfortunately, I woke in more pain than I fell asleep in.

i have a pattern – I feel worse first thing & feel good until I approach bed time.. I hurt in the morning because I’m still – I haven’t been moving or stimulating my muscles while I sleep unless of my restless legs are keeping me up of course. When bedtime approaches, I start too slow down and that makes me more aware of my body and the pain and inflammation that I’ve been ignoring comes to light. I have always been like this as a kid – I would be ill, but better in the evenings & want to go to guides or soccer or dance…

Instead of Cub Camp, Saturday activities ended up included folding laundry and reading a book in the lounger in the backyard. Not alot of activity.

So I went to bed on Saturday night in lots of pain. Woke up Sunday with lots of pain.

Sunday required me to pack for the cottage, which was fun..it took me several hours to get my stuff organized & packed (yet still left swimsuits at home).. Imagine, had I gone to camp, how much pain I would be in. Packing up Sunday morning and making a 4 hour drive home, then unpacking equipment at our storage area. Afterwards, add in me trying to unpack from camp, do some laundry and then repack for the cottage all in a few hours then drive almost 2 hours up here..

imagine if I had tried to do camp, I would not have been able to pack for the cottage, let alone make it here for at least 2 days, possibly up to 4 or 5..

So, as the days have progressed, I’m having to be careful.. We (Lilly & I) ran errands on Tuesday, and spontaneously stopped at a local conservation area to take the pup for a walk (6 km later we are both dying) .. I walked around in the cool lake water to help the pain and heat in my leggs as well as a quick dip for Lil for that & heat relief… It helped a bit..

We took Wednesday easy.. Went about 500m in the kayak before I remembered I had a webinar in 20 minutes! & that was my exercise.. And yesterday I crashed out.. not even making it outta bed until 7 – in the evening..

So while, besides yesterday, I’m doing “ok”.. I was managing pain at about a 4/10. Imagine where I would have been had I gone to camp.. Besides packing, I’d be driving 4 hours to the camp ground, help set up three sites, including tents, kitchens and shelter. Poor sleep Friday night would almost be a given, but up between 7am & 8am for breakfast & on my feet going all day, including canoeing with the kids, hiking, games, skills training, archery, helping with 3 meals a day in some capacity, etc. No breaks, no stops, no naps untill after campfire, if I made it that long, starting at 9:30-10pm start.. so in bed for midnight.

Cubs & Scouts Camping c at Camp Impressa

Sunday would have consisted of breakfast & packing the equipment all up & reorganizing the trailer. Then the 4 hour drive back as I mentioned earlier..

if you add all that activity on minimum sleep, are you really all that surprised that I would have crashed on Monday. Which I kind of did anyways just from packing up with the cottage.. if without that activity my pain levels are at a 4, maybe 5. Imagine what level I would have been at had I actually participated. I figure probably near 9/10 and I tend to go to the ER between the levels of 7 and 8!

Normally, if I’m ‘well’ I can do camp Friday – Sunday, then crash for 2 days.. but I can normally make it through camp.. but I wasn’t starting at ‘well’..

So, yeah I am so glad my pain doc ordered me to stay home..

Are you getting enough sleep?

August 10, 2021

How much sleep do you really need? In general, most adults need about 7 hours of sleep per night. Children and adolescents need even more – around 9 or 10 hours per night. However, the amount of sleep people need varies widely, ranging from 5 to 10 hours per night. The important thing is to find out how much sleep you need to stay healthy and alert, and then try to get this amount of sleep each night.

People like me, with fibromyalgia have this problem. We require more sleep & rest than the average person.

At my worst I was in bed by midnight, with several extended & cognitively aware wakeup. I’d wake at noon to my alarm. I’d have a nap as well between 1 & 4 hours. I was still exhausted & non-functional.. Currently I am getting about 6ish actual hours of sleep at night as per my fitbit. I generally wake on my own, but use a alarm of I need to be somewhere at a specific time. I, generally, no longer take naps.

I am still exhausted, but because my health is better overall, I am… functional.

The right amount of sleep is the amount that lets you wake up feeling refreshed and well. You may be able to function on the amount of sleep you are getting now, but it still may not be enough for you to reach your full potential. Here’s how to tell if you’re not getting enough sleep:

  • You need an alarm clock to wake up.
  • You sleep longer and better on weekends.
  • You have trouble getting out of bed in the morning.
  • You feel tired during the day.
  • You have bags or dark circles under your eyes.
  • You doze off while sitting in a public place, such as a movie theatre or meeting.
  • You get drowsy while driving.
  • You have trouble concentrating.
  • You have early morning headaches.

I’m sure many fibromites have several of these signs of poor sleep. I laugh at the suggestion of waking feeling refreshed and well – Doesn’t happen much for us..

These are the issues *I* experience:

  • I still need an alarm clock on occassion, for something important
  • I have trouble getting out of bed feeling sluggish & pain spikes just after I wake.
  • I frequently feel tired during the day.
  • I’ve bags and dark circles under my eyes.
  • I don’t usually doze off while sitting in a public place but it has happened.
  • I have only been excessive drowsy while driving three times.
  • I have trouble concentrating, but this could be fibro fog.

Like the last point, all of these signs could be caused by Fibromyalgia or it could be caused by poor sleep. It is very difficult to differentiate as signs & symptoms are very similar as are the forms of treatment are also very similar.

If you notice any of these signs, you may not be getting enough sleep. Try to gradually increase the amount of sleep you get each night until you find the right amount – you’ll know that you’ve got it when these signs start to go away. If you haven’t been getting enough sleep for a long time, it may take a while to recover. If you’ve tried everything and still have trouble getting a good night’s sleep, talk to your doctor. You may have a sleep disorder.

I agree, if this is a persistent & reoccuring problem, it might be a good idea to see your GP & get a sleep study done to see what’s up in your actual sleep.. I’ll try & post about my sleep study experiences.



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I pilfered this from PC Health… but all material copyright of MediResource Inc. 1996 – 2021.  Original Source :  www.medbroadcast.com/healthfeature/gethealthfeature/Sleep-Getting-a-Good-Nights-Worth

Could You Handle it? Constant Pain?

June 22, 2021

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?

A Letter from Fibromyalgia

May 6, 2021
A Letter from Fibromyalgia

Hii!! My Name is Fibromyalgia, and I’m an Invisible Chronic Illness.

I am now velcroed to you for life.

Others around you can’t see me or hear me, but YOUR body feels me.

I can attack you anywhere and anyhow I please.

I can cause severe pain or, if I’m in a good mood, I can just cause you to ache all over.

Remember when you and Energy ran around together and had fun?

I took Energy from you, and gave you Exhaustion. Try to have fun now! I also took Good Sleep from you and, in its place, gave you Brain Fog.

I can make you tremble internally or make you feel cold or hot when everyone else feels normal.

Oh, yeah, I can make you feel anxious or depressed, too.

If you have something planned, or are looking forward to a great day, I can take that away, too.

You didn’t ask for me. I chose you for various reasons: That virus you had that you never recovered from, or that car accident, or maybe it was the years of abuse and trauma. Well, anyway, I’m here to stay!

I hear you’re going to see a doctor who can get rid of me. I’m rolling on the floor, laughing. Just try. 

You will have to go to many, many doctors until you find one who can help you effectively.

Pain pills, sleeping pills, energy pills, anti-anxiety pills

You will be put on pain pills, sleeping pills, energy pills, anti-anxiety pills, antidepressants, anti-epileptic or anti-convulsant pills. You will be told you are suffering from anxiety or depression, given a TENs unit, get massaged. You will be told that if you just sleep and exercise properly I will go away, told to think positively. You will be poked and prodded. MOST OF ALL, you will not taken as seriously as you feel when you cry to the doctor how debilitating it is to live your life, every single day.

Your family, friends will all listen to you until they just get tired of hearing about how I make you feel, and that I’m a debilitating disease.

Some of they will say things like “Oh, you are just having a bad day” or”Well, remember, you can’t do the things you use to do 20 YEARS ago”, not hearing that you said 20 DAYS ago. Some will just start talking behind your back, while you slowly feel that you are losing your dignity trying to make them understand, especially when you are in the middle of a conversation with a “Normal” person, and can’t remember what you were going to say next!

In closing, (I was hoping that I kept this part a secret), but I guess you already found out… the ONLY place you will get any support and understanding in dealing with me is with Other People With Fibromyalgia.

Yesterday was Exhausting!

April 13, 2021

Yesterday was exhausting. I don’t know how. I don’t know why. I didn’t do much. I had a chronic pain support group in the morning on Zoom and a workshop at lunchtime also on Zoom (tho I napped through part of it- Ooops). I had a medical appointment which consisted of me putting my feet into foam for my orthotics and saying I like those ones. I did not have to make dinner. I did not have to run around after my dog. I did pretty much nothing, but it was exhausting & my day was still not over..

As some of you may know, so if you may not I am a night owl. I tend to go to sleep well after midnight.

Last night was a little different however. I’m winding down from my day and I’m playing on my phone and chatted with one of my Cub leaders who’s also up until the wee hours. I realize that I’m almost at the end of my rope and I’m thinking it’s probably what? 1, maybe 2 o’clock in the morning? Nope. I look at the clock & it is 9:24pm. I could not believe it.

9:24pm & I’m Exhausted

& so I decide that sleep is probably needed..but I *had* to have a shower (those who lost alot of weight understand why). Despite my hair not have being washed in over a week I had decided that I wasn’t going to wash my hair because that would be just too much for me to handle.

I was right. Cuz what do Indo in the shower, under the nice hot spray? I decide “Nah, I got this, I can wash my hair tonight”. Funny girl. But I did get myself showered and hair cleaned & conditioned. All nice & clean and no worse for wear, right? *Snicker*

Corner shower stall with a door that I couldn’t open.

My problem was the shower door..You see, I don’t have a tub, just a good sized shower stall with a door similar to the one shown here And after I turned off the water I pushed the door open. Or rather, I tried. It wouldn’t budge.. Tried again, harder & it jiggled.. I had to put a bit of weight behind it to get it open. Ya know why? Cuz I was too freaking weak & exhausted to get the damn door open! & Do you know how *light* those things are?

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.

Ongoing Holiday Crash

January 9, 2021

Most of the time when I have a crash in the holidays I end up in the hospital because of how bad the pain can get.. I usually manage for a few days at a level 7 or 8 out of 10 and after that, I’m in the ER.

This year, while the pain has been up, it hasn’t spiked to that level yet. And I hope it doesn’t. But unfortunately I have been in less higher level since the 26th of December – so, 17 days days now, which is unusual, for me… A severely sucks..

But I called my pain physician in Scarborough for an appointment on Monday & see my other pain doctor Tuesday. . With pain levels at a 5 or 6, I can deal, but only to a point.. after more than 2 weeks, I’ve hit that point..

Wish me luck!

Remission! What is it?

October 2, 2020

What does this look like? Honestly, it’s not that different. Most people who have chronic illnesses only go out when they are having good day.. In remission, you are having primarily good days.. So, the big change is that people will see more of that person. Instead of once every 2-3 weeks, depending on your relationship, you might see them 2-3 times in a week!

What does it look like for me? It looks like better connections with family & friends as I can see and interact with them more.. It looks like consistent cubs meetings with a higher participation. It looks like I can do something from before but without the bad consequences like I was able to go for a hike down by the lake today and tomorrow I may be a little sore, instead of a nice big crash that used to happen.

Remission means a temporary relief from pain, fatigue & other dymptoms. I can do so much more than I could!

Do I still crash? Absolutely.. Does it happen as much right now? No. Is it as bad, as painful, right now? No, actually the pain is better right now. Does it last as long? Not usually.

So, I’m sure you are wondering, can I return to ‘normal’ life? No.. I’m still having off days. I still can & do overdo it. I crashed out one day last week for no particular reason. Today I am toast cuz of the weather shift earlier in the week. I having been slowly adding more ‘normal’ things to my life including friendships, romantic relationships, scouting commitments, family interactions, increased activity including exercise.

Am I still in pain? Am I symptomatic? Sbsolutely. That one reason I know I’m not ‘cured’ I still have pain evety single day. But lately it’s only a 2 or 3 on the pain scale these days.. I still am exhausted, but I don’t necessarily need the 12+ hours of sleep to recover from a regular day. IBS? Oh yeah., Fibro Fog? Definately.. Sensitivities? Sure, some less intense.. Morning stiffness? Oh yeah, but it’s usually less..

Why am I in remission? What did I do? I can’t say for sure, but the timing of the end of a toxic even abusive long-term relationship may have something to do with it. I returned home, slowly rebuilt relationships, re-establishing connections, increased fitness, weight loss, changed my meds & got off several, decreased dosages of others.. Lots of good changes, all of which may have contributed to my current status.

Will this last? I wish, but I doubt it.

Chronic Illness Bingo leads to Acceptance

July 27, 2020

This is kinda like the get to know style of bingo, but it’s just for you. Check off what applies to you.

I originally just posted this on my regular social media, but choose to write about here.. The reason I do is the reaction of a friend of mine, Susan.

Late last year she was diagnosed with Rheumatoid Arthritis. Now, she has been struggling with acceptance that her life he’s been permanently altered through no fault of her own. Recently she say the post on my social media of my bingo card (see below) & noticed that she checked the few spaces I had empty. She then got curious & looked at the rest of the card noticing that she actually checked a majority of the boxes aswell.

This was her “Ah-ha” type moment. And realized “I have a chronic illness.” I think this realization, and acceptance of the hard truth has actually be a relief for her. She’s realized that there are limits and she has to learn where her limits are. But she’s no longer stuck and is able to move forward.

While I’m not happy that my post gobsmacked her in the face with the truth, I am glad she’s got the acceptance and is moving forward.


See where my 3 bingo lines are. How full isUis your card? I know someone who actually checks each box. 😦