Posts Tagged ‘sleep’

Flaring! Flaring bad!

November 23, 2021

Yesterday was the perfect storm. Everything conspired against me.

  1. Poor Sleep. According to my fitbit, for the last several weeks, I’ve been getting usually between 4 & 6 hours of sleep a night, average rating poor-fair. There’s the occasional longer, better sleep in there, but not often..
  2. Forgotten Medication. When I left for the cottage early this morning, I forgot all my meds at home. Admittedly I didn’t need them all today, but there are certain ones that I do have to take at certain times for them to be effective. Unfortunately, those got left at home. I did have limited or weaker alternatives which I suppose is better than nothing.
  3. Emotional Stress. I am currently having problems with my current relationship. I’m not sure if it’s something I can handle and accept or not, so there’s alot going on there..
  4. Poor Diet. Due to the aforementioned stress, I haven’t been eating.. I haven’t been eating well & I haven’t been eating much. Neither is good, both is worse.
  5. Activity. Spent the day in bed.. with my boyfriend, not sleeping. While this is usually a good thing, due to stress, I was unable to truely relax and enjoy it. So I was getting the workout without all the longer term benefits
  6. Physical Stress. After I’d started going down hill, I had a horrible drive home. What would normally be a nice relaxing 1½ hour drive home from the cottage turned into a 3+hour nightmare. Between accidents causing an entire highway to shut down for over 14hrs, excessive detours, multiple accidents on said detours, snow.. The body begins to tense up more & more & more.. and with me being in the car I wasn’t able to like stretch or anything creating more physical stress

For the first time in over 3 years, my pain turned to a solid 8/10.

After 2+ hours, 4 Tylenol3, 4 muscle relaxers, an anti-inflammatory, my CBD oil, prescription edibles, and a backrub with A535.. the edge started to come off, but I also started feeling the effects of over medication too..

I just can’t win..

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

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.



.


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

Camping with Fibro

August 6, 2021

Yes, I can go camping with Fibro. It borders on Glamping, but I’m still in the outdoors, in my tent & cooking out on a stove. And yes, I have gone camping twice this summer, so far with at least one more weekend planned

I have had to make many modifications to how I can camp.

I am no longer able to go backpacking. I would not be able to handle the weight I’d have to carry mile after mile.. In my teens, I had gone up to the back country of Algonquin, spending several days out in the wilds with friends. That’s not happening anymore. The mind is willing, but the body’s not even gonna consider it! Lol.

I have had to upgrade from a 2-person hiking tent to a a 4-person, 3-season tent. I can no longer sleep on the ground, on thin mats, bubble pads or wood flooring like at Camp Adelaide. I now have a double high queen size air mattress that I use. I have a fitted sheet on it & depending on the weather 1-2 sleeping bags & my Lilly blanket. I also have a pillow that I use exclusively for camping.

My camp setup for virtual Cuboree

I have borrowed a camp stove from one of my cub packs (yes, the pack knows). It connects to the smaller green propane tanks, not a big 20lber. It is not one that requires you to prime it, cuz I find that one difficult. But also does use the huge tanks either so I don’t have to move that either. In addition I recently purchased my own stove used. I still need to clean it & test it tho.

I can light a propane lantern both on the green tanks & the big white ones. I’m lazy & cheap so I only use a small battery-operated portable one & my handy dandy flashlight. Blessed with good night sight, I don’t usually need a light source to sneak off to the bathroom at 2 in the morning.

I recently purchased an small indoor/outdoor table to use camping & at in-person & outdoor cub events. I am not sitting on the ground to cook or prep. With COVID, we can not share the picnic table with others right now, so I need my own table.

As some of y’all know, I have a long sleep cycle, and I’m sure your curious how I do that camping. Easy: ear plugs, & sleep mask. With my Cubs, I have our SiTs do breakfast, but otherwise, I suck it up. I know I will crash out during the week, but it is worth it.

My pink sleep mask (I have 3) & a pair is standard orange ear plugs.

To sit, I bring lawn chairs. My butt is too big & my balance to horrible to be able to get in an actual camp chair, handmade or store bought. Add to the fact that they are barely off the ground, with some I’d have to get on the ground to get up! Lol

This is what my current campfire chair looks like, but with thicker wood .. Made it in Rover Scouts.

Swimming? Heaven! The water is a blessing. Yes, not everywhere has water, but I camp at my bff’s cottage so there’s water there. Our cottage is also on a lake.. I enjoy the cool lake as it’s refreshing, especially on warm day.

I make sure I take all my medications, as prescribed at the appropriate time. I also bring sufficient extra medications, especially the PRN meds cuz you never know when you’ll need them. In addition to the regular meds I also bring my A535 & the Voltaran cuz again, you never know.

Are there other aspects of camping that I’m missing? Let me know & I will tell you how I deal with them!

Instant Gratification

July 23, 2021

I know want what I want and I want it now.

I did some exercise before bed. Normally a little exercise drains me & nixes my RLS.. Normally. Not so last night. It backfired.

I couldn’t sleep for a few reasons:

  1. My Restless Leggs Syndrome kicked in despite the exercise. I had to take 1½ Trazadone to get them to settle..
  2. My mind could not shut off..Kept thinking about stuff, like my cub scouts and my plans for the weekend. I just kept going over stuff in my head – despite trying 3 different sleep meditations.
  3. The exercise reacted like it used to – negatively. In the last few years, basic exercise has not been the hindrance it was for the 10+ years prior. So imagine my surprise when in snuggling into bed & my leggs (in addition to RLS) start to hurt.. it was not good. I’ve not had this reaction (other than overdoing it) is several years.

No, the want for immediate gratification and instant response was not for sleep. In this case, it was for my pain meds to work. I had to run 3 courses of meds. The first one the regular evening maintenance pain regime. The second was more Tylenol about an hour later. After still not getting additional relief from the additional meds, I bumped it up, 2 more Tylenol, 2 Robax which includes another, but different, muscle relaxant & anti-inflammatory.

At 5 am I was still awake..

Extra Restless RLS

June 25, 2021

On Wednesday night I was having problems getting to sleep, big problems. I have Restless Leg Syndrome and when it keeps me up, I take a medication which usually relaxes my body enough to sleep.

Restless Leggs keep moving and can’t stop, making you unable to sleep.

Not this night. No way. I first noticed the issue in my right arm, oddly enough… (Yes. You can get restless leg syndrome in your arms but it’s not the most common place) Then my left leg I noticed was twitching and minutes later my right leg followed suit. All of these are becoming highly hyper-stimulated so much so that normally only one limb that sensitive I know is a significant problem.. But I had three.. I finally noticed my left arm tacked on for the ride, but was fairly ‘mild’ comparatively speaking.

After waiting a half an hour for the meds to kick in, and they didn’t, I knew I’d have to take drastic steps because there was absolutely no way I was going to be able to sleep with three very very restless limbs and one mildly restless arm.

What do I do? I jump on the treadmill. Yes, the RLS can be hugely painful but it wasn’t too bad, achey but mostly just constant moving.. Normally with mild RLS I only have to walk for 5 minutes but this wasn’t mild. Also, my Fitbit doesn’t record exercise until you hit 15 minutes.. lol.. So I was on the treadmill for 20 minutes.. had another quick shower and hopped into bed nice and relaxed.

This is not the end of this story….

30 Facts!!

May 24, 2021

Originally written for the 25th Anniversary with 25 facts,, this is a list of things you should know, from someone with Fibromyalgia. From someone who experiences it, not just studies it. I have taken the original, modified it and added to it from *my* perspective as my experiences with fibro are not the same as hers. OP info available at the bottom.

  1. Every morning is a tough morning.
  2. I can sleep all day and still feel like I just ran a marathon.
  3. If I went out last night, I need a day or two or three to recover — its okay, it was worth it.
  4. When i’m tired, let me sleep.
  5. Certain foods make me flare up, For me that’s items like Ice cream breaded food products (like fish sticks or chicken fingers), mayo & salad dressing, KD, etc.. Some I know why, others no clue.
  6. When I’m in a flare, leave me alone in a dark room but please check in, even if I don’t answer. It makes me feel cared for & loved .If I am flaring and I am responding, I’m likely asking for a ride to the ER.
  7. Yes, diet matters, but in flare mode, all bets are off.
  8. Yes, my face is swollen. No, I didn’t gain 5 pounds overnight… Well I could have gained, but not on my face.. So, Yes, that is a tell that I am in a flare.
  9. I have many different sizes of clothes in my closet to accommodate flare vs. non-flare days. I currently have clothing from a medium ( very generous medium) to 3x.. I’ve lost weight, so likely only a few items & eventually they will go too.
  10. Fibro Fog sucks. Ya know when you get absent-minded every once in a while? Misplaced your keys? Misread something? Forgot to water the plants? That’s Brain or Fibro Fog. While it happens to everyone at some point, it not the norm. For people with Fibromyalgia this is the norm. Every day. I have even lost my train of thought, mid-sentance. It happens enough that those close to me don’t bat an eyelash when it happens. Some even see it happening & will remind me of what I was saying. The worst, is fogging out when I drive & I love to drive, but have to be super careful to make sure I am clear minded.
  11. Ask before you touch. Some days, I can barely tolerate the feel of clothing or even my hair on my skin. When I’m ok, give gentle hugs please — my skin & muscles may still be tender. But if I give you a bear hug, you can give me one back!
  12. Bright lights, loud noise and too many smells can overload the senses and can cause nauseous (or worse) or kick in a migraine.
  13. Allergies play havoc on my body. Scented products like perfumes & body products are typical culprits Sometimes I don’t even know I’m allergic until I experience it, So it’s a bit of Russian Roulette when I go into public because I can’t control what scents other people wear. Food allergies/sensitivities do not make life any easier either, especially when eating out.
  14. I am a human barometer ( there’s a post around about that.. I can typically tell it’s gonna be too cold, too wet, too hot.
  15. Yes, i am on medications, sometimes even alot of them. I have a decent relationship with the pharmacy staff, and I know exactly what all my medications are, the dosage, and why I’m on it & how it helps.
  16. To me, car rides are joy rides cuz I really love to drive. I need to stop every hour or two to keep my legs from going numb or seizing up. It, for me, is so worth it! But so many with fibro feel differently than I do & equate it to a highly painful roller coaster ride.
  17. Some days it’s OK to let my Fibro win. It’s a marathon, not a sprint.
  18. I can get moody. You would be too if you were in pain all the time, be patient with me.
  19. Don’t be surprised if I can tell your mood as soon you walk in the room. My Fibro/spidey-senses are tingling.
  20. My day, week and month are carefully planned to accommodate my Fibro. Only important events & people like you are scheduled.
  21. If I cancel my plans with you, don’t be mad.. Remember, I made plans with you, because you are important to me. I am trying and obviously want to hang out with you, so please keep any nasty commentator yourself as I already feel guilty.
  22. Your friend with Fibro that says they have no pain doesn’t make me feel any better. Plus if they have no pain, they may not have fibro cuz *all* Fibromites have *some* level of pain at *all* times Alternatively they could simply lying either about having fibro or about being totally pain-free. Also, just cuz someone says they are “Good” that’s does not mean pain-free
  23. “You should exercise.” ROTFLMAO. Have you considered going to the gym while you are in the middle of the flu with body-wide aches & pain, fatigue? Didn’t think so, so how can you expect me to when I have body-wide aches & pain and fatigue? Yes, I do exercise, but I’m not a hypocrite. Do you know how long it took from me to go from bobbing in the water during aquafit to get to my current level of exercise? Years!! It helps, that I have lost weight. Before you use me as an example of of someone with fibro who is ‘fit’, remember that I started my journey to become healthier & to increase my fitness level in the winter of 2012, almost 9 years ago. And I would not consider myself ‘fit’
  24. Going to the doctor makes me sad & sometimes overwhelmed— it’s a reminder of my condition. And it doesn’t help that I have at minimum a half dozen medical appointments each month – GP, Pain Doc, RMT, Physio/Osteo therapy, Gyn, Neuro, Dental, Psych, mental health support groups, and one offs for tests like bloodwork, ultrasound, x-ray, MRI or CT.
  25. There are zero no-pain days, but my low-pain days are my happy days. So if I’m looking good and acting good and I’m social, I’m better, right? No, just a good *low* pain day. Fibromyalgia is chronic & will not go away
  26. Because of Fibro, the mandated downtime gives me the opportunity to write this blog, and I’m grateful. Unfortunately, some of that downtime does not even permit blog writing because the pain or fatigue is*too* intense, so I have missed posts.
  27. Because of Fibro, some Fibromites get to spend more time with their families than if they were healthy.
  28. if i am being a dick about my health, you will not change my mind. I have to figure it out myself. For those in my life who put up with that for years, I am sorry.
  29. Because of Fibro, I’ve become part of a strong, supportive community that reminds me I’m never alone.
  30. Yes, I have depression. No, it’s not because of my fibro. My depression started at age 16, but fibro, we believe, started from Mono when I was 19-20. So, obvs they started at different times plus I do know the triggering event that started my depression.

Original published by Puja Rios on May 11, 2007 at https://www.huffpost.com/entry/25-facts-for-fibromyalgia-awareness-day_b_59148663e4b01ad573dac1c2

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?

Christmas with Chronic Health Issues

December 23, 2020

The holiday season is supposed to be the hap-happiest time, the most wonderful time of the year!
Unfortunately, it comes with a lot of stress and expectations. Many healthy or ‘normal’ people can find it difficult. Those dealing with chronic illnesses like fibro, CFS/ME, lupus, etc have it worse.. Unfortunately, for someit is the worst time of the year.

Here are some strategies that can help when things get hectic:

• Pace yourself. Conserve your energy and taking it slow.
• Say “No”: You can only do so much. If you overextend yourself, that can & usually does instigate a flare in symptoms.
• Ask for help. Again, you can only do so much. Ask someone else to help out with what you can’t do like stringing up the lights
• Stop the crash by stopping before it happens. . If you go until you’re too tired or too sore or too stressed to do more then you most definitely will crash. “Just do one or two more things, or visit one or two more shops, or go down one or two more aisles'” – this thought process only leads to decreased health..
• Keep it simple. —Decorate but not as much, celebrate—but not as much, cook if you can—but not as much.”
• Put some extra thought in any travel plans (well, not a an issue this year, but in the future) traveling during the holidays. A busy travel schedule can be hell. Give yourself the time you need .. To recover from a travel day.. To rest between flights& have sufficient layover.. & Bring what you need to travel. Be it snacks, water, ear plugs, eye mask, medications . Plan ahead and pace yourself.
• Prep food ahead of time. Get the veggies ready to throw in the pot, make the potatoes the day before, roll & fill the pies a week or two before & freeze.. If you do breakfast, mix up your eggs, or pancake mix or French toast egg dip prior.. the night before so it ready on Christmas morning.
• Organuze. Set the dinning room table the week before, or the kitchen the night or two prior to whatever extent you can.
• Leave guilt behind! Take a reality check. You have a chronic pain illness which limits what and how much you can do. Do not blaming yourself because you can’t provide the same elaborate holiday festivities you once did. Don’t even try to do everything you think your family expects from you. Don’t put those expectations on yourself – they are not realistic aspirations.
• Set priorities. You can no longer do every single holiday traditions you used to. You now have to determine what means the most to you & consider the energy levels required. Some can be modified like I stead of going walking to check out Christmas, you take a drive to check out the lights. So, again, be realistic.
• Avoid overnight visitors if you can.. If you can’t, set the expectations like ‘I’m not making you breakfast, but help yourself’ or ‘I don’t get up until 10am so they know not to knock off n my door unless it’s an emergency.’ or ‘Can you please strip the bed before you go – just toss them into a pile on the floor for me to wash.’
• If you are hosting, you can (again, not this year) ask each one to bring one or two dishes, So my sister brings the turkey, my be CES do the stuffing & gravy, my brother brings the vegetables, Mom brings the desserts.. This leaves yourself only one or two simple items to prepare. In this case bun’s & potatoes. OR just go somewhere for dinner or even a family vacation together over Christmas .
• Organize your gift giving. Keep a list of who is getting gifts & what, so you won’t have the foggy moment of ‘Did I get this for Uncle John, Cousin Sue, or my brother?’ I even make note on where to get things so I’m not heading the same time 3 times. Plus My cookie list: I make 3 different sized bundles of cookies every year. A small ½dozen to the little guys or extended family, 2 doz to the nieces, nephews, godchildren (no, Kaden, my Godson and my nephew does not get two no matter how much he’d like that), & 3 doz to bff’s, my pain doc, & the bf’s…
• While it may be more expensive, the extra cost may be worth it to shop online. You avoid the stress and exhaustion of holiday shopping in crowds of people & lots on scencury impact. Gifts can sometimes be sent directly to the recipients, saving you the hassle of finding a box, packaging the gifts and waiting in line at the post office.
• Use gift bags instead of traditional wrapping or there are decorative boxes that you can just drop something in, tape it, add ribbon & done. It is physically stressful on the body to wrap gift after gift.. My back always gives out.
• What your diet!.. Do not over eat. Take home leftovers for later instead. If you eat too much, especially too fast, you just know your body will retaliate in some manner. And avoid all the extra sugar available at this time of year, cookies, cakes, candies, pastries…
• Change your schedule as little as possible. The changes on Christmas Holiday & especially Christmas day frequently send our bodies out of whack,. Try & keep your normal activities going.. Keep up with an exercise regime. Stick, to a relative amount, with your regular diet. Keep your sleep schedule as close to normal, if you have your book club meeting stops for 2 weeks, schedule a chat with on of your friends at the same time so that you are still doing something in lieu..
• While I keep seeing the recommendation of avoiding Eggnog, I can’t agree with this, but you do need to be careful. Egg Nog has both milk/cream & eggs in it so those sensitivities need to be confirmed. If you are buying your eggnog, be aware there a ton of preservatings, thickeners & other chemicals in it. If you make it from scratch – eggs, milk, sugar & vanilla, and while it tastes better, you can not keep it around forever, even in the fridge.
• Take time for yourself.Even if it’s just two slow deep breath’s, or an hour meditation, or ordering dinner in or doing your nails.. Self care at this time if year is just as important, especially with the limitations & upcoming 1 month lockdown here where I am.

With everything going on at Christmas time, it’s inevitable that while you may not X ash, you’re not going to feel great on Boxing Day. . If possible, just stay home and rest. The more time you can take, the better.

It’s also pertainent that these tips you need not only be aware of during the holidays, be the rest of the year throughb as well.

Merry Christmas

The Fibromyalgia Letter

December 8, 2020

The Fibromyalgia Letter
~Author unknown

Fibromyalgia is a chronic condition characterized by widespread pain in your muscles, ligaments and tendons, as well as fatigue and multiple tender points – places on your body where slight pressure causes pain.

Myofascial Pain Syndrome is a chronic form of muscle pain. The pain of Myofascial Pain Syndrome centers around sensitive points in your muscles called trigger points. The trigger points in your muscles can be painful when touched. And the pain can spread throughout the affected muscle.

I want to talk to you about Fibromyalgia (FM) and Chronic Myofascial Pain Syndrome (MPS). Many have never heard of these conditions and for those who have, many are misinformed. And because of this, judgments are made that may not be correct. So I ask you to keep an open mind as I try to explain who I am and how FM/MPS has assaulted not only my life but those whom I love as well.

I cannot show you a physically open wound to show how much pain I’m in. If I could you would take one look at that, tell me to sit right down, get me a pillow, offer me something to eat or drink and have that concerned and understanding look on your faces. However with Fibromyalgia, you will hear from many people that they would rather have a broken leg any day than suffer the kind of pain these disorders inflict. To me, a broken leg is even a poor example to compare suffering to these disorders and an insult to those of us with those disorders.
You see, I suffer from a disease that you cannot see; a disease that there is no cure for and that keeps the medical community baffled at how to treat and battle this demon, who’s attacks are relentless. My pain works silently, stealing my joy and replacing it with tears. On the outside we look alike you and I; you wont see my scars as you would a person who, say, had suffered a car accident. You won’t see my pain in the way you would a person undergoing chemo for cancer; however, my pain is just as real and just as debilitating. And in many ways my pain may be more destructive because people can’t see it and do not understand….

You must see with your ears and your heart what your eyes cannot see. You must listen carefully to what I am telling you. What I describe to you may not make much sense to you and may be difficult for you to understand. Sometimes it may seem to you to be a different universe that I discuss. Know that it probably is. You don’t have to fully understand my universe and you cannot possibly. However hear my pain, listen for red flags always of any danger signals where you may need to help with added assistance. I like to call it “sending in the troops.” Anytime I do not seem in touch with reality.
Please don’t get angry at my seemingly lack of interest in doing things; I punish myself enough I assure you. My tears are shed many times when no one is around. My embarrassment is covered by a joke or laughter, but inside I want to die. You will hear many things from me that to you seem as easily resolvable. You may wonder why I make the same “wrong” decisions over and over again. Why haven’t I learned by this time? Why can’t I see the senselessness of my behaviour? I may seem to be getting my life together and them bottom out all over again.
Please understand the difference between “happy” and “healthy”. When you’ve got the flu you probably feel miserable with it, but I’ve been sick for years. I can’t be miserable all the time, in fact I work hard at not being miserable. So if you’re talking to me and I sound happy, it means I’m happy. That’s all. I may be tired. I may be in pain. I may be sicker than ever. Please, don’t say, “Oh, you’re sounding better!” I am not sounding better, I am sounding happy.

What is happening here? Am I lazy, stupid, etc? Nope. My physical brain and body is very different than yours. I experience life different than the way you do. I feel different than you do. Most of my “friends” are gone; even members of my own family have abandoned me. I have been accused of “playing games” for another’s sympathy. I have been called unreliable because I am forced to cancel plans I made at the last minute because of the burning and pain in my legs or arms and shoulders. The pain can be so intense that I cannot put my clothes on and I am left in my tears as I miss out on yet another activity I used to love and once participated in with enthusiasm. Do I experience mood swings? If I am hurting I may be angry, sad, depressed, or any of the hundred moods in the world. I’ll never know what mood I will wake up with? I may treat you cruelly and say horrible things to you; I may ignore you completely, or cry on your shoulder unstopping when I’m in Fibro Flare. You may wonder what you said or did that made me this way. Well you did nothing it’s the Fibromyalgia and all its underlining factors causing this.

While the most predominant symptoms of fibromyalgia include widespread pain and persistent fatigue, the resulting cognitive impairment of this condition may be its most maddening. Commonly referred to as fibro fog, this symptom is a conglomeration of cognitive challenges. Fibro fog is understood to be a physical symptom of fibromyalgia, not a psychological one. Just as no two individuals experience fibromyalgia in the same way, fibro fog also has a varying range of indications, including: Mental confusion, Fuzzy thinking, Short-term memory loss, Inability to concentrate or pay attention, and Language lapses.

This is why I feel like a child at times. Just the other day I put the eggs I bought at the store in the pantry, on the shelf, instead of in the refrigerator. When I talk to people, many times I lose my train of thought in mid sentence or forget the simplest word needed to explain or describe something. Please try to understand how it feels to have another go behind me in my home to make sure the stove is off after I cook an occasional meal. Please try to understand how it feels to “lose” the keys, only to find them in the freezer. As I try to maintain my dignity the demon assaults me at every turn. I have a physical illness and it isn’t my fault and I didn’t ask for it I don’t want it and I don’t deserve it.

Occuring at the deepest level of the sleep cycle, individuals with fibromyalgia typically lack sufficient restorative sleep. We know that at the deeper levels of sleep, called delta wave sleep, a person’s mind conducts internal housekeeping. During delta wave sleep, newly acquired information is assimilated and integrated into the brain. The inability to get sufficient delta wave sleep impairs the ability to recall information and operate at a normal level of mental efficiency.

Sleep, when it happens or restless and unrestorative

Sleep, when I do get some, it is restless and I wake often because of the pain the sheets have on my legs or because I twitch uncontrollably. I walk through many of my days in a daze with the Fibro-fog laughing at me as I stumble and grasp for clarity.

Just because I can do a thing one day, that doesn’t mean I will be able to do the same thing the next day or next week. I may be able to take that walk after dinner on a warm July evening; the next day or even the in the next hour I may not be able to walk to the fridge to get a cold drink because my muscles have begun to cramp and lock up or spasm uncontrollably. There are those who say “but you did that yesterday!” “What is your problem today?” The hurt I experience at those words scars me so deeply that I have let my family and friends down again; and still they don’t understand.

On a brighter side I want you to know that I still have my sense of humour. If you take the time to spend with me you will see that. I love to tell that joke to make another’s face light up and smile at my wit. I am fun to be with if you will spend the time with me on my own playing field; is this too much to ask? I want nothing more than to be a part of your life. I have found that I can be a strong friend in many ways. I am your friend, your supporter and many times I will be the one to do the research for your latest project; many times I will be your biggest fan and the world will know how proud I am at your accomplishments and how honored I am to have you in my life.

All I ask is that you become educated about Fibromyalgia. I am someone in your life that suffers from Fibromyalgia. You may think you know everything there is to know about it, but there is more information out there than you think. It is more complicated then you think, and it is more life changing then you think.

Lend a helping hand. If you want to be helpful to someone with Fibromyalgia, just ask what you can do. Be flexible with invitations and plans that you have made. Understand that sometimes the pain of Fibromyalgia is overwhelming. Be active. Accompany them to a doctor’s appointment and take an active interest in their treatment. You can take notes at the doctor’s office and then review your notes together at home. Don’t take things personally. Some people with Fibromyalgia suffer from sudden mood changes. Try not to take these mood swings personally as they are part of the syndrome.

So you see, you and I are not that much different. I too have hopes, dreams, goals and this demon. Do you have an unseen demon that assaults you and no one else can see? Have you had to fight a fight that crushes you and brings you to your knees? I will be by your side, win or lose, I promise you that; I will be there in ways that I can. I will give all I can as I can, I promise you that. But I have to do this thing my way. Please understand that I am in such a fight myself and I know that I have little hope of a cure or effective treatments, at least right now.

Thank you for spending your time with me today. I hope we can work through this thing, you and me. Please understand that I am just like you.

So I Need You To Please Understand Me