Archive for the ‘Out-sourced Article’ Category

24 Ways to Ease Up

June 11, 2021

With apologies to Paul Simon, there must be… 24 ways to ease your living.

Why 24? Why not? It’s a start! That people have to go online and type the words “How to relax” into a search engine should be indication enough that modern life may be getting too stressful. Why, with all the innovations and timesavers, do we feel more and more rushed?

Time is a constant – it always remains the same. What changes are our expectations of how much we can accomplish in that same old time. It’s scientifically proven that stress can lead to sickness and that relaxation is one of the things that can soothe the savage beast.

Hopefully everyone has at least one favourite way to wind down, because not every stress soother will suit every single person. Next time you feel tense and uptight, try out one of these ways to relax. Perhaps some will work for you, while others might inspire you to write your own list of ease-up ideas.

  1. Dance.
  2. Mono-task, as opposed to multitasking.
  3. Progressively tense each muscle, holding each for 5 seconds then releasing.
  4. Stretch.
  5. Go for a walk.
  6. Play a game. Sudoku, crosswords, hopscotch, whatever.
  7. Soak in a bath.
  8. Laugh.
  9. Turn off your electronics. Enjoy the quiet.
  10. Read.
  11. Take a 5-minute break to clear your mind and breathe.
  12. Cover your eyes with an eye pillow. Allow your anxious eyeballs to feel like they’re floating rather than gripping.
  13. Play with your pet.
  14. Drink a cup of hot tea. Or iced if that makes you feel better!
  15. Take a whiff of a favourite soothing scent, maybe citrus or lavender.
  16. Clean out the drawers of your dresser. De-cluttered can equal destressed.
  17. Soak your feet in Epsom salts.
  18. Listen to your favourite music.
  19. Light a candle and watch the flame flicker.
  20. Write in a diary.
  21. Talk to a friend.
  22. Make everyday activities more meditative. Like walking, for instance. Rather than rush down the hallway, place one foot in front of the other and really feel your feet ground into the earth with each step.
  23. Unplug (or turn off) your phone.
  24. Strive to take deep breaths to reach the tight spaces of your body – try to feel your breathing in your lower back and your shoulders

Source: PC Health by Shoppers Drug Mart

Myth Debunked V of VI

May 30, 2021

IT IS A MIDDLE AGED WOMAN’S ILLNESS

Although more women than men are diagnosed with fibromyalgia, the condition can affect men, women and children. The condition doesn’t discriminate by age, race or gender.

Myself, my issues started at age 19-20 when I has mono during summer break

They have also found that with the new criteria, there are many more men who are getting accurately diagnosed with fibromyalgia.

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

Myth Debunked IV of VI

May 23, 2021

IT’S ‘JUST WIDESPREAD PAIN’

LOL! Aren’t you the funny one? If only….

Widespread pain is the common factor among those with fibromyalgia, though there are also particular points in the body more sensitive to pain (‘tender points’) that many experience and are often used in the diagnosis of the condition. Pain types also vary, from stabbing and burning, to aching and throbbing. There are also numerous other symptoms commonly found with fibromyalgia, from digestive troubles and fatigue, to stiffness and cognitive problems (aka ‘fibro fog’).

Symptoms not only vary between people. They can vary for the same person, minute by minute, day by day. It’s unpredictable and no two days are ever quite the same. There can be ‘flares’, where symptoms are considerably more severe compared to that person’s usual baseline; such flares can be unbearably exhausting and painful.

The extensive myriad of symptoms of fibromyalgia can’t simply be pushed through nor is it a case of mind over matter.

The COVID Vaccine & CFS/ME, A Professional Recommendation

February 25, 2021

I received this email recently from Dan, a member of my local ME&CFS community.. The topic, as I’m sure you’ve guessed, is in regards to vaccinations and ME&CFS… Dr. Nancy Klimas’ gives her opinion on this very topic – her message is highlighted in blue.

Warning: lots of technical jargon. If you can understand it all, please translate when this means to us lesser mortals… 😉 I do think the Doc is basically saying unless to react to vaccines you should get the vaccine but the alternative could be, potentially, a long, slow, painful death, alone, without friends or family.

To Members of the ME/CFS Community –
Our recent fundraising for Dr. Nancy Klimas’ ME/CFS medical research at the Institute for Neuro-Immune Medicine (INIM) at Nova Southeastern University raised over $4,200 in a couple of weeks.
As our fundraising efforts were underway, Nancy was formulating her thoughts on how those of us with ME/CFS might consider getting the vaccine.
She recently sent me the following:


Hi Dan – I put together my opinion and hopefully its posted on our web page (https://www.nova.edu/nim/index.html) today. Nancy
To vaccinate or not – with ME/CFS
I have been asked this question dozens of times over the past week. This is my opinion –
COVID kills people. It kills people with over activated and damaged immune systems preferentially – and that is what ME/CFS is all about. So while there certainly is a risk of an ME relapse with these hyper reactive vaccines (the first wave to be released) , you have to weigh the possibility of an ME relapse against the risk of death from COVID.
You can mitigate the risk in a number of ways – just the way you do when you feel a relapse coming on. Before the vaccine make sure you are taking enough antioxidants, particularly NAC or glutathione and coQ10. The big mediator of post vaccination relapse and immediate reactions is mast cell activation. If it happens immediately, that is anaphylaxis, but if it happens slowly and low grade over days the mediators mast cells release can drive a classic ME/CFS relapse. So, take an antihistamine before and for several days after the vaccine – the strongest one you tolerate. (Benadryl is one of the strongest, Zyrtec is another good choice). There are many mast cell stabilizers, watch Dr. Maitlands excellent lecture on our web page from the recent conference we sponsored on the subject if you want to know more: Managing the Syndrome Soup: POTS, EDS, MCAS & ME/CFS https://www.nova.edu/nim/events.html
There are natural supplements that act to block or clear histamine and stabilize mast cells such as alpha lipoic acid, ascorbic acid, B6, diamine oxidase enzymes (DAO), luteolin, N-acetylcysteine (NAC), Omega-3’s, riboflavin, SAMe, quercetin, and natural sources of theophylline like green and black teas. If you have been diagnosed with mast cell activation syndrome it would make sense that your risk of an immediate reaction to any vaccine should be higher, though the data on the risk to people with mast cell activation syndrome or prior vaccine allergic reactions is not yet known with the COVID vaccines. I suspect we will know fairly quickly , with millions of doses already administered. So you may want to wait (taking all of the COVID precautions very seriously) and when you do take the vaccine plan to stay in the medical setting for at least 30 minutes, consider several hours, to be in a safe place if you do have a reaction. In this special circumstance premedication with a steroid, the same way we premedicate people who need a CT scan with iodine contrast dye, could be provided by your physician.
Please note that if you take the vaccine you should take the whole dose, and the current vaccines, Pfizer and Moderna, should be administered twice. It is not yet known how long the immunity will last, but there are blood tests that look at antibody levels available. They came to market very quickly, we will know more about the quality of the antibody tests over the next few months. Most importantly, vaccination is not 100% (in fact the two initial vaccines trials were 95% effective in preventing or reducing the severity of infection) So vaccination does not exclude strict distancing guidelines, and the masks continue until “herd immunity” levels of vaccination have been reached (70% of the population)!
Of course, these recommendations are simply my opinion, and we will know a lot more about safety in the coming months – but 30,000 plus folks took the vaccines in the trials (that’s a lot) and you have to be moved by the photos of health care professionals lining up to receive their vaccine. Is there a risk? Yes. Certainly more a risk of ME/CFS relapse than anaphylaxis, which should be manageable. Is it worth it? Your decision, weighing all that you can find out. But more than 330,000 Americans have died and the new strain of the virus is likely to make our current rate of infection go much higher. Please take this seriously.
More than you wanted to know:
Partial vs. absolute protection
Most vaccines offer incomplete protection against infection and this is likely to be the case with SARS-CoV-2 vaccines as well. However, even partial protection will be of benefit both to patients and the general public. Partial protection may mean that most but not all persons develop immunity, or that some recipients develop weak immunity that makes the consequences of infection less severe than they would have been otherwise.
(December 2020 update: Information from the American College of Rheumatology Regarding Vaccination Against SARS-CoV-2).
Here are the official recommendations:
The American College of Allergy, Asthma, and Immunology (ACAAI) has issued guidance for physicians and other providers related to the risk of an allergic reaction following vaccination with an mRNA-based coronavirus disease 2019 (COVID-19) vaccine.
ACAAI’s recommendations are in line with guidance issued by the Centers for Disease Control and Prevention. Specifically, that patients experiencing a severe allergic reaction after getting the first shot should not receive the second shot.
In addition, the ACAAI COVID-19 Vaccine Task Force recommends the following guidance for physicians and other providers:
The mRNA COVID-19 vaccines should be administered in a healthcare setting where anaphylaxis can be treated. All individuals must be observed for at least 15 to 30 minutes after injection to monitor for any adverse reaction. All anaphylactic reactions should be managed immediately with epinephrine as first-line treatment.
The mRNA COVID-19 vaccines should not be administered to individuals with a known history of a severe allergic reaction to any component of the vaccine. Although the specific vaccine component causing the anaphylaxis has not been identified, polyethylene glycol is one of its ingredients and has been known to cause anaphylaxis.
Data related to risk in individuals with a history of allergic reactions to previous vaccinations and/or mast cell activation syndrome/idiopathic anaphylaxis is very limited and evolving. A decision to receive either of the mRNA COVID-19 vaccines that are currently approved for Emergency Use Authorisation by the US Food and Drug Administration should be undertaken by the individual, along with their physician or other provider administering the vaccine using their professional judgment balancing the benefits and risks associated with taking the vaccine.
People with common allergies to medications, foods, inhalants, insects and latex are no more likely than the general public to have an allergic reaction to the mRNA COVID-19 vaccines. Those patients should be informed of the benefits of the vaccine versus its risks.
The mRNA COVID-19 vaccines are not live vaccines and can be administered to immunocompromised patients. Physicians and other providers should inform such immunocompromised patients of the possibility of a diminished immune response to the vaccines.
Reference: https://acaai.org/news/american-college-allergy-asthma-and-immunology-updates-guidance-risk-allergic-reactions-mrna
SOURCE: American College of Allergy, Asthma, and Immunology
The American College of Rheumatology offers additional guidance for people on immunosuppressive therapy, and discussed in some detail the issues around vaccination and herd immunity. Here is the link:
https://www.rheumatology.org/Portals/0/Files/ACR-Information-Vaccination-Against-SARS-CoV-2.pdf
Still, I think 2021 will be a happy new year. The most vulnerable should see the vaccines available in the coming weeks! And yes, it will take a lot to get our citizens to the level of herd immunity with mostly the logistics in the news, but really it is denial of the risk of COVID 19 allowing this head in the sand thinking. Take a hard look at the stats and your risk. Then make a smart decision.
Nancy

Exercise Snacks? Huh?

January 4, 2021

Exercise Snacks? Yeah.. & no, not cookies shaped like bodybuilders! Lol!

Weightlifting Gingerbread Men

Many of you know about my loss in weight and my improved health.. Part of that is due to exercisr…But because of covid, my gym closed & since it reopened, I haven’t felt comfortable going back yet..

Some of you know that I’ve taken up “running” to continue weight loss or at least maintain what I have lost. I still needed to exercise so I’ve been doing a short circuit around the block every couple days.. Some of it’s simply walking, some jogging, and when I’m feeling up to it, I’ve gotten into a dead run (I’m faster than my dog!).. With the changing of the seasons, weather’s gotten cooler & with regular snow just around the corner, touring my neighborhood is not going to be an option.

I saw this research article from UBC about Exercise Snacks & it’s an interesting concept.. Do short bouts, like 1 minute short, of exercise a couple of times a day and it gives you the same benefits as doing it all in all be shot.

This Is How Short One Minute Is

So, I’m thinking that hopping on Mom’s treadmill a couple times a day for a few minutes could very well be a better option for me than running around the neighborhood in snow boots!

Now, I didn’t always have this much functionality because of my fibromyalgia. I also realize that there are many fellow Fibromites or others who cannot go running, jogging, or even walking a distance.. This might still be an option because you don’t have to walk. Your exercise does not necessarily have to be intense. You can do stretches – one or two simple yoga poses.. Or lift weights and when I say weights, I’m talking anything heavier than just your hand. This could give you the same benefits..

It’s something to consider..

https://beyond.ubc.ca/exercise-snacks/?utm_source=fb&utm_medium=Facebook_Instream_Video&utm_campaign=BAM-exercisesnacks-ON&utm_content=6214293621226&fbclid=IwAR136bMw5Spkla0AjSfJWXlt7VyYixwzdBv2k6vDSygkXA4wi9VeTMwNDrg

** If this link does not work, please advise. I do have a local copy. **

Run the Dishwasher Twice

December 10, 2020

Author Unknown

“When I was at one of my lowest (mental) points in life, I couldn’t get out of bed some days. I had no energy or motivation and was barely getting by.

I had therapy once per week, and on this particular week I didn’t have much to ‘bring’ to the session. He asked how my week was and I really had nothing to say.

“What are you struggling with?” he asked.
I gestured around me and said “I dunno man. Life.”

Not satisfied with my answer, he said “No, what exactly are you worried about right now? What feels overwhelming? When you go home after this session, what issue will be staring at you?”

I knew the answer, but it was so ridiculous that I didn’t want to say it.

I wanted to have something more substantial.Something more profound.But I didn’t.

So I told him, “Honestly? The dishes. It’s stupid, I know, but the more I look at them the more I CAN’T do them because I’ll have to scrub them before I put them in the dishwasher, because the dishwasher sucks, and I just can’t stand and scrub the dishes.”

What feels overwhelming today? Is it the dishes?
It usually is for me!

I felt like an idiot even saying it. 

What kind of grown-ass woman is undone by a stack of dishes? There are people out there with *actual* problems, and I’m whining to my therapist about dishes?

But, my therapist nodded in understanding and then said: “RUN THE DISHWASHER TWICE.”

I began to tell him that you’re not supposed to, but he stopped me.

“Why the hell aren’t you supposed to? If you don’t want to scrub the dishes and your dishwasher sucks, run it twice. Run it three times, who cares?! Rules do not exist, so stop giving yourself rules.”

It blew my mind in a way that I don’t think I can properly express.

That day, I went home and tossed my smelly dishes haphazardly into the dishwasher and ran it three times.

I felt like I had conquered a dragon.

The next day, I took a shower lying down.
A few days later, I folded my laundry and put it wherever the f**k they fit.

There were no longer arbitrary rules I had to follow, and it gave me the freedom to make accomplishments again.

Now that I’m in a healthier place, I rinse off my dishes and put them in the dishwasher properly. I shower standing up. I sort my laundry.

But, at a time when living was a struggle instead of a blessing, I learned an incredibly important lesson:
THERE ARE NO RULES.
RUN THE DISHWASHER TWICE!!!”

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

Not All Disabilities Are Visible

February 23, 2017

Not All Disabilities Are Visible
By Kate Mitchell, May 3, 2016

http://www.huffpost.com/us/entry/9825348

Too often recently, friends or online acquaintances of mine have been accused of faking their disability. I personally am also disabled. I have autoimmune arthritis, fibromyalgia, anemia of chronic inflammation, and asthma. I’ve been in pain every day since 2001, and over the past 6 years, it has become moderate to severe every day. I experience pain in 54 joints. I am unable to work full-time or go to school full-time at the moment. I take 40 pills a day and 4 inhalers. I’m at the doctor every single week. I’ve had 5 surgeries. But you would never know any of this by just looking at a picture of me. And I’m not alone, as the vast majority of people who have disabilities have invisible ones. But because the majority of people have the idea that everyone who is disabled looks disabled, too many treat disabled people poorly. They shame them, don’t allow them to park in certain places, don’t allow them to use a wheelchair, and more. This is so beyond not okay, and it stems from the misconception that everyone who is disabled looks disabled.

What makes someone disabled? The definition of disabled is “incapacitated by illness or injury” or “physically or mentally impaired in a way that substantially limits activity especially in relation to employment or education.” As I learned while studying for my degree in secondary education, someone is handicapped if their incapacitation is temporary and disabled if it is permanent. For example, someone who has had ankle surgery is handicapped until they recover. If you’d like to read more about this, Emory University School of Medicine has a great explanation.

Everyone who is disabled looks disabled, right? Nope! As the folks at Invisible Illness Awareness Week figured out based on data from the 2002 US Census Bureau, 96 percent of people who live with an illness live with an invisible one, and 73 percent of people who live with a severe disability do not use devices like a wheelchair. This means that when you look at them, you wouldn’t know that they’re disabled. Think about how many people you see who are clearly disabled during an average week. Statistically, for every person you’ve seen who looks disabled, you’ve seen at least 4 more who are disabled but don’t look it.

So how can you tell if someone is disabled? Often, you can’t, so if someone says that they are, you need to take them at their word. If someone looks fine but parks in disabled parking — and have a placard for it — you can’t accuse them of faking it. If someone looks fine but wants or needs a wheelchair, don’t question it.

At the same time, we do need to make sure that people who don’t have disabled parking don’t park in those spots. They also can’t park there with their blinkers on while they wait for someone. If you believe that you should be able to park there because of a health issue, talk to your doctor. If your doctor disagrees with you, don’t park there. If your doctor agrees with you, you still need to wait until you get your placard in the mail before you park there. Anyone who parks in the disabled parking spots without a placard of plate is breaking the law.

What can you do about that? If you see someone park in the disabled parking spot without a placard, call them out on it or write down their license plate and contact the police. People parking in those spots without a placard are breaking the law pure and simple. The more they get away with it, the more they will do it. Oh, and doing this can prevent someone who needs it from going somewhere and doing something they can’t do without the parking. However, before bringing it up with someone, double check to see if they have a placard and you just can’t see it. Verbally attacking someone because you don’t think they’re disabled makes their life already harder than it needs to be.

7 Extraordinary Things

February 3, 2017

7 Extraordinary Things about People with Chronic Illnesses

From Chronic Illness on The Mighty.