As chronic illness sufferers, we are so often reminded of something that I believe is of great detriment to our well being. When well people tell us that our health struggles, our personal challenges, the great storms of our lives “will some day be of use.”
I’ve grown to loathe this idea. I realize that it is meant to be an encouragement, however, it causes myself and my brothers and sisters in pain deeper despair. “Some day?” It’s as though they are reminding us that we don’t have as much to give until we are restored to health. I completely reject anything of the sort!
I believe that you and I are worthy and valuable just as we are. Yes, right now. You were no more “special” when your nervous system was working properly, but I can attest that the memory of wellness certainly has a shining halo around it.
We feel so small and insignificant after illness devours our lives, and those we love in its wake. There is no “after the tsunami lifts” with chronic illness, as we are always seeking out cover, our safe places are constantly being destroyed, and the physical and emotional turmoil can feel endless. My personal peace rests in God, a relationship which has grown inside of my own tsunami.
This message of purpose is one I try to frequent on this page because I struggle so deeply with the whispers that my life isn’t enough, I should be doing more, and I would be so much more valuable as a person if only my body worked again.
This is my pride speaking!
In those moments when the whispers win, I have forgotten how many opportunities I’m supplied with to have an impact, even in the very midst of my personal battles. Maybe, and probably because of my personal struggles, I’ve been allowed these chances. What seemingly small opportunities and connections might you be taking for granted in your own life?
The next time someone reminds you that all the pain and struggles you are battling will be worth “something” some day, please remind them that pain doesn’t have to stay hidden, and that your time traveling the path of illness is not a waste.
I don’t believe we have to wait until we’re perfect for our lives to have value. If that’s true, then I guess we will all be waiting forever!
Are we meant to see the silver lining in every storm before God can give us purpose through it? Even in the very midst of the battle, your story, your experience, your willingness to relate to and comfort others is so rare and valuable that it stands out among the noise and busy crowded world we live in.
It’s so easy to withdraw when the going gets tough. In time, however, we feel so marginalized and isolated. You do have a voice. Your story, your purpose, your personal gifts matter- and you are needed in this world.
We greatly undervalue the quiet connections, asking others how they are and actually listening in return, sending a note by mail to a struggling friend, or letting someone know they’ve been in your prayers.
Society does not measure these acts as successes, but what if you redefine what success means in your life? You may have very little energy to spare, but what you have to share is precious.
I believe God’s measure of success looks much different than our own. We become so focused on perfection, staying hidden until the right moment to present ourselves shiny and clean, having overcome our difficult and uncomfortable circumstances. This is what the rest of the world applauds. But don’t we each have unique and valuable lessons to share that come with the daily perseverance of ongoing trials?
It’s one thing to be crippled by a body that relentlessly fights against you, but please don’t believe the lie that you are less-than or it will cripple your spirit.
Today, May 12th is Chronic Fatigue Syndrome (ME/SEID) and Fibromyalgia World Awareness Day. This blogger @ Tips for ME discusses the mysteries of ME/CFS. Particularly interesting to me is the “Canary” or sensitivities aspect, which after 5 years, my doctors still haven’t been able to understand why I can hardly tolerate my own voice, sounds, lights, or smells. Chemical sensitivities alone can be such a confining aspect of Chronic Fatigue Syndrome/ME for so many CFS/ME sufferers.
Thank you for checking out a few of these enlightening ME/CFS facts, life wisdom, and helping raise awareness today!
This ’10 insights’ #May12BlogBomb post is a perspective from the awareness of having ME, looking outwards at the world through the lens of ME. I believe that people with ME (pwme) have useful observations to contribute to society, perhaps a little akin to Old Testament minor prophets. This can be compared to the voices of other marginalised people groups, such as the queer community, the Equal Rights Movement and feminism. Each marginalised group gains different insights on life, related to their specific barriers to inclusion.
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After sharing the original Sick Lives Matter, I’ve been surprised and grateful for the response of the piece! However in response, some said, it’s too late for change. Some responded that we are too far down this path of patient neglect in healthcare, and there is no returning from it now. But I believe it is just the right time for us to rise up. I’m not alone either, with online patient forums like Patients Not Addicts gathering to influence legislation in Washington DC, advocacy groups like Give Pain a Voice, pain organizations working to change the stigma of pain patients, and so many private individuals sharing their stories wherever the universe allows, we ARE in the middle of a revolution. Are you part of it?
How can we rise up when so many of us can’t even work? How are we supposed to change policy when doctors and family don’t seem to listen? How can we make an impact on the future when many of us are struggling to care for ourselves? These are the reasons we HAVE to do something about it.
Consider cancer patients. In the last 10-15 years, the treatment of cancer has turned around because cancer patients joined together and created a movement. Everyone knows Susan G. Komen represents Breast Cancer Awareness because hard working cancer patients were able to get big organizations to stand behind their cause. Years ago, minorities with cancer were being ignored, rare cancers were going undetected, and people were terrified of finding out they could have any form of cancer because there were so few options- and you were likely too late anyway. Now, we have cancer treatment centers popping up all over the country, treatments that are actually successful at sending cancer into remission, and celebrities who bravely share their cancer experiences with the public.
Consider HIV/AIDS. As recently as 15 years ago, HIV was still a death sentence. Celebrities may have been wearing red ribbons, but people were still dying so quickly, suffering in silence, and had little recourse. Not only did society brush off the disease as a punishment- so did healthcare professionals (#STIGMA). Now, not only is there awareness, there is a culture of S.T.D. prevention and regular testing. When the worst happens, and someone is diagnosed, life is not over, people are living long lives because they have treatment and accessible management. Educated HIV doctors aren’t rare, and medication is becoming more affordable (although there is still a ways to go in regard to RX coverage).
HIV patients knew something about being brushed under the rug of society and healthcare, and paying for it with their lives. They changed the game by telling their personal stories so that those who tried could not look away! They joined together for a united cause, and chronic illness survivors can look to their bravery for inspiration.
I dream of emergency rooms where doctors and nurses treat chronic pain patient’s emergencies as high priority as everyone else’s. I see a future of chronic disease treatment centers around the country. I envision home visit physicians covered by insurance. I imagine the homebound and bedbound having access to quality patient care and mental health care from home, covered by insurance. I pray for research facilities searching for a vaccine to end degenerative neurological pain diseases. I see a world in which sudden deaths from unmanaged pain, and suicides from under-managed pain are a heartbreaking thing of the past. Is under-treated chronic illness a sign of the end times we are meant to accept with apathy, or is there something we can do from our sick beds and wheelchairs to make a change? We can be the ones who flipped the script for future chronic patients, young and old. This can be the moment you decided to take a stand. What is your dream?
Your life matters. Your story matters. Your voice matters.
To share your story or to learn how you can get involved in advocacy online, email firstname.lastname@example.org
If you’re buying for a loved one with a chronic illness this holiday season, I have you covered with these gift suggestions, links, gadgets and creative ideas to help you find the perfect present especially for them!
*Starred items are sold by disabled entrepreneurs.
Those of us with chronic conditions tend to have extreme dry skin. Personally, I also have extra sensitive skin (because I hit the genetic jackpot). A deep moisturizing product with collagen or an anti-aging night mask helps soak into that dehydrated skin. Mary Kay’s Extra Emollient Night Cream at only $14, has been a top seller for decades. My mother used it from the time I was a little girl and she has always had beautiful skin. My sister and I love it, so it’s definitely one of those heirloom products you pass down through generations. Now I’m passing it on to you! I recently heard a woman in a chronic illness support group suggest that this cream works better than antibiotic ointment for healing her sores caused by autoimmune disease. I wish I could give a bit of this to everyone suffering from chronic dry skin.
I’ve been scouting medical alert bracelets, and these are my top picks specifically for those of us with multiple conditions, rare diseases, or complex health needs.
These fabulous medical ID Italian charm bracelets are available on Gadow jewelry, Ebay, and Etsy for between $20-$40. The individual links are sold separately, and I love that they can be custom ordered. If you want to add a new diagnosis, or take a medication off, links can be added or.removed easily. If you lose or gain weight, they can be easily adjusted by adding or removing a couple links. I also love the idea that you can mix your serious seizure condition alert charm next to a sparkly pink unicorn charm just for funzies 😁 As far as EMT paramedics go, in an emergency, they’re more likely to look for an alert bracelet rather than searching for a necklace, key chain, or wallet card, etc.
The new tech trend in medical info/alert jewelry is sporting a hidden USB in your bling. If you have ever been at the ER, urgent care, or doctor appointment when you couldn’t advocate for yourself, then you might see the benefits of medical USB jewelry. This technology is available in a broad range of styles from bracelets, key chains, necklaces at every price point.
One thing I learned when I entered the POTS world is that they have the lockdown on health technology!
Since you can get a quick-read blood pressure cuff at any drug store, I’m going to try and kick it up a notch here.
Today, smart watches can read heartrate, blood pressure, and blood oxygen level, along with tracking steps, distance, calories burned and has a sleep companion which all syncs with your mobile. It comes in Dysautonomia blue as well as black; price range on Amazon, $93-$250. If this works as well as the company claims, that is one heck of a Dysautonomiac invention!
I learned Biofeedback 11 years ago to help me manage pain, stress and sleep. Four years ago, when all the crazy Dysautonomia and POTS symptoms undid my body, I started whipping out my Biofeedback techniques like my life depended on it (well, it has). Learning to have better control over typically automatic responses like breathing, heart rate, blood flow, circulation, and blood pressure are very challenging, but can be so helpful in conditions affecting the heart, nervous system, or in conditions which interrupt sleep.
This amazing Biofeedback and Neurofeedback smart phone app was made by a little known group you might know called THE US DEPARTMENT OF DEFENSE! The app can monitor respiratory rate, skin responses, temperature changes, as well as brain waves. Check out more about this FREE app here at Neurogadget.com which includes links to purchase the biosensor devices for your smart phone. Good job, America!
I can’t say enough about compression socks. And now, they are finally cute! You can even find printed compression leggings. They help us keep the “blood pooling” or edema to a minimum by encouraging circulation. Compression stockings displace blood from the lower extremities and squeeze it into the upper body where we are desperately lacking. It also lowers vascular issues in the legs and helps prevent strokes. This is one pair of socks that earn their keep! Check more cute compression socks links here on my last gift guide for people with Chronic Pain.
If you know someone with Dysautonomia, POTS, or Hypotension, then you know we are a little obsessed with our salt intake to raise our blood pressure. For the holidays, turn your loved one into a connoisseur of specialty salts by allowing them to sample 6 different types of sea salts from around the world. Purchase through Amazon, made by The Spice Lab, for only $29.95. They arrive in a wooden stand, nestled in a kraft gift box. Or, spice up your loved one’s pallet with specialty seasoned salts. SaltWorks.com creates 5 unique salt blends like Merlot salt and black truffle salt in their Fusion Flavored Salt Sampler, $26.95. Mmmm, pardon my drool!
Fellow Dysautonomia fighter and advocate, Suzanne Stewart makes fabulous custom awareness jewelry to your desire. A portion of her earnings go to help chronic illness organizations because her rapidly beating, pace-maker equipped heart is also full and generous! Take a look at her website, *Support in Jewerly, and order something pretty for the chronic diva in your life.
Dr. Lam, a leading expert on Dysautonomia, has developed Tai Chi for Rehabilitation, $24.95. I first learned about Tai Chi for Dysautonomia from POTS and chronic pain blogger, Elle and the Auto Gnome who attributes Dr. Lam’s Tai Chi in part for her improvement. The DVD’s can be adapted to a sitting position or even (as I’m learning) a flat position, thanks to my cardiac rehab therapist. [If you give a gift of “
healing” to a friend with a chronic illness, it’s best to include it in addition to her main gift. Otherwise, it may send a negative message to us that we aren’t doing enough for our health in your eyes.]
Artist, Sarah Allegra has developed this magical *2016 Calendar with Red Bubble, depicting her favorite images. Sarah Allegra is not only a provoking photographer, she also suffers from Chronic Fatigue Syndrome/ME/SEID which always influences her art. She is an activist, raising awareness through her blog, Mythic Pictures, as well as through her expressive images which speak volumes. If your loved one has severe fatigue associated with her disorder, often artwork can say so much more than words.
Other awesome gift ideas include: a nice juicer/blender $30-$200, electric toothbrush $5-$200, Funny original Awareness tops $20-$30 on Zazzle and Cafepress, Whole Foods gift card, Amazon gift card, vitamin shop gift card, massage gift certificate, electrolyte drink drops, or ear plugs.
As you are shopping for your friend, consider that she has to lay down A LOT due to chronic daily fatigue and because of many other symptoms causing falling or potentially fainting when she tries to get up and around. Anything cozy, things she can do laying down, and compact items she can keep near her bedside are all ways to play the chronic shopping game. Thank you for playing! Most of all, your solid presence in your loved one’s life is already a win as far as they are concerned. Just so you know, you are the best! Thank you for visiting,
Find out what my gift-giving NO NO’s are when shopping for your chronically ill/ disabled loved one here.
Article dated February, 2015
Last week, the Institute of Medicine re-named Chronic Fatigue Syndrome, also known as ME, now renamed SEID (Systemic Exertion Intolerance Disease). CFS is the name most commonly used in the United States while Myalgic Encephalomyelitis (ME) is the more common name used internationally. As of last week, there is a third name to distinguish this already mysterious condition: SEID.
For many, Chronic Fatigue Syndrome onsets after a virus. Imagine being a perfectly healthy adult, child or teen and after a bout with a feverish flu, you find yourself feeling worse and worse. The appropriate time for the virus lapses, but as much as you fight to get well, your body and mind feel as though they are in shut down mode. No amount of rest or sleep is enough anymore. Just chewing your food makes you feel as though you need a nap. Your thoughts become so blurry and confused- you begin to fear Alzheimer’s or dementia. Migraines, loss of appetite, body pain, hypersensitivity to smells, sounds, lights- these symptoms are the tip of the CFS/ME/SEID iceberg. Imagine feeling like you are moving through quick sand- and there is no end to the breakdown. You are sure it will pass in time, but as time passes, you only become more weak, frail, and may even struggle to stand and walk. Doctors help you by telling you to “get more rest” and send you home. This is what many with Chronic Fatigue Syndrome experience.
The name, Chronic Fatigue Syndrome has been a problem since its origin. Can you imagine suddenly finding yourself confined to a bed, unable to raise your arms from sheer fatigue only to be told by other medical professionals and family members: “Sure, aren’t we all ‘chronically fatigued?” That has been the overwhelming problem with the original name. Doctors without enough education of the disorder have been brushing their patients off, leaving them incapacitated and searching for answers on their own limited energy supply. It’s estimated that as many as 91% of those with CFS/ME have yet to be diagnosed because physicians are still unsure whether or not it is psychological or “all in their [patient’s] heads”.
Over one year ago, the Institute of Medicine began running studies and tests to narrow down specific symptoms and markers in individuals who develop Chronic Fatigue Syndrome/ME. An independent panel of 15 physicians then met to narrow down a few diagnostic criteria and to decide on a new name for CFS/ME. They believe that each word in “Systemic Exertion Intolerance Disease” is more specific and clear as to how the condition affects the body.
Systemic Exertion- indicating the extreme fatigue or malaise all over the entire body.
Intolerance- implies impairment from any sort of activity. ‘Orthostatic Intolerance’ is an example of a common type of intolerance found in those with CFS (cited in the IOM study).
Like other conditions, those with CFS/SEID experience a long list of symptoms which are not all included in the short diagnostic list; keeping the diagnostic criteria short is meant to help doctors understand and treat patients with this disorder better. Here is the list of symptoms the Institute of Medicine’s special panel narrowed down after one year of testing those with Chronic Fatigue Syndrome:
-Profound fatigue lasting at least six months
-Complete exhaustion even after minor physical or cognitive exertion
-Cognitive impairment or “brain fog”
-Worsening of symptoms upon standing or Orthostatic Intolerance
There is a feeling in the CFS/ME community that the re-naming is confusing and sets struggling patients back further. Many in the CFS/ME community are disappointed that the new name is not “Myalgic Encephalomyelitis” to make the name cohesive, finally. Even though Chronic Fatigue Syndrome was the official name in the United States, the international name, “ME” has been largely adopted by CFS sufferers here in the US. However, the IOM argue that there is not significant research showing that patients with SEID have brain inflammation or muscle pain as the core symptoms (the meaning of ME). Some CFS specialists and patients with CFS/ME feel the updated name and new marker symptoms overlook critical issues of the disease like chronic pain, headaches, sensitivities, cardiac disturbances, and gastro-intestinal disruption. This isn’t the first time this disorder has had a make-over, however. Epidemic Neuromyasthenia, Myalgia Nervosa, Epstein Barre, and Royal Free Disease are a few of the names that have been given to those with CFS, now called Systemic Exertion Intolerance Disease. Researchers say in the next 5 years, it may be re-named again, as new research will likely continue to emerge.
Even though there is still uncertainty regarding the new name, many believe there is reason to be positive. The 235-page report released by the IOM is expected to lead to more research for the disease, better funding, and more appropriate treatments for Systemic Exertion Intolerance Disease. Those who at one point may have called up to 2.5 million Americans “complainers” or “lazy” will have more information and education to help the ignorant understand this debilitating condition. Doctors who may have once brushed off their patients’ symptoms because there were unclear guidelines, now have clarity on which criteria specify SEID. And lastly, it is now called a “disease” which shows there is progress in understanding how it affects the brain and body. For such a complex condition that is so debilitating, more understanding and more awareness is paramount!
Read the IOM report for yourself here: http://www.iom.edu/~/media/Files/Report%20Files/2015/MECFS/MECFS_KeyFacts.pdf