Discussing Chronic Illness & Disability Globally
Are you in a heat wave? It seems the entire country is encountering record high’s this week. Our AC has been pushing so hard that it shut down! It got ugly in here, but thankfully, it wasn’t out for long.
Just the short spell of overheating, and increased pain gave me a better appreciation for the privilege of air conditioning. Things which are so commonplace to us in this part of the world, are luxuries to others who don’t have the same amenities.
That’s something I’ve been considering more and more in regard to health.
Not that we should compare ourselves to anyone else, but it can be valuable to approach your life from a different lens now and then.
So, I share my own perspectives with you in the hope it encourages you in your life as so many of you have encouraged me.
So many are dying globally from diseases that can be managed, even treated successfully. I can’t even imagine living the life I’ve been handed in an area where water is miles away, let alone a doctor. But there are children, teens, women, and men who do these same battles each day armed with so much less.
It breaks my heart to think about how people go on living in the same unimaginable pain, and try to accept these very same conditions without the hope of treatment so many of us have here. But, I imagine their lives aren’t built around doctors, medications, and treatments, but instead, seeking to find more meaning behind the curtain of life.
In my reality, it’s easy to fall into depression over the people and life opportunities that I’ve lost in the wake of illness.
Grief is an important part of processing major life changes. There’s nothing wrong with sadness and sorrow. Self loathing and hating my life, however would be.
Still, I struggle with feelings of hopelessness, as is common for all of us fighting chronic pain and rare diseases. As if our bodies aren’t suffering enough, we can suffer just as much in mind and spirit.
I suppose that’s why the mission of seeking out hope is so meaningful to me. I know we don’t always have the strength to find hope for ourselves; our lives at times appear devoid of all light. That’s why I wanted this to be a place anyone could reach out and find it when needed.
A short online course on the history of disability last month had quite an impact on me. Individuals from India, Japan, China, Africa, Australia and the UK shared their personal experiences living with various impairments.
Around the world, people like myself are viewed as cursed, and are disowned by society. Many believe their conditions were brought on by sins from their past lives, or they believe they are being punished for wrongs done by their ancestors. In many parts of the world, society sees disability as contagious- even demonic. It’s not uncommon for disabled children to live on the street, or to be “put away” in facilities for life. We have a shameful history of treating our disabled brethren in a less than dignified manner here in the states as well.
I think of my own faith and how it has shaped my experience through this journey. Jesus was never afraid of being seen around sickness, disability, poverty, or with the people who had been most marginalized. He put a spotlight on the parts of society which had been ignored. He didn’t run away, He ran toward people who were suffering.
I’m not the young woman I was 13 years ago- I’ve been changed by this journey.
There’s always a new version of us that emerges from the flames of adversity; we have to get to know ourselves again and what each new chapter of life will bring next.
I know having multiple rare diseases isn’t a life anyone anywhere would wish for.
Yet, this is my one life, and I’m tasked with finding a way to make the most of the days I have. That challenge to myself can seem impossible, but I’ve become convinced that the fight is worth it. My life is worth fighting for.
And so is yours.
Below is more information about our disabled brothers and sisters around the globe.
-Today in the United States, chronic pain patients are often denied treatment, especially if their condition responds best to opioid pain medication.
-In Japan, women were forced to terminate their pregnancies if the baby was found to have an abnormality. (This law was abolished as recently as 1995.)
-In China, disabled individuals are depicted on tv like side shows which doesn’t translate easily for disabled individuals living in society.
- 70 million people need a wheelchair, but only 10% have access to one
- 360 million people have significant hearing loss, but less than 10% of people who need hearing aids have access to them.
- 93 million children worldwide have moderate or severe disability
Mental Illnesses are on the rise worldwide.
- Depression: 300 million people
- Bipolar affective disorder: 60 million
- Schizophrenia & other psychotic disorders: 21 million
Chronic Illness has become a worldwide epidemic.
- 300 million people live with Rare Diseases (1/2 are children).
- Chronic Pain effects 1.5 Billion people around the world.
- It’s estimated that 60% of the world’s population has at least one chronic illness (highest percentages in developing countries).
See World Health Organization and NORD (National Organization for Rare Diseases) to read more.
Chronic Illness and Surrender
Oh friends, life is such a journey…. faith is such a journey. And I must admit that I get very weary. Like ground down to a fine powder kind of weary.
It is easy to say that God is in control. I know some who revert to that message like it is their refrain between sentences. We continue to push and plan and overcome, and then get angry at Him when WE fail.
When I was diagnosed with chronic pain in 2004, I felt like my adult life was just getting rolling. I had big dreams, and I was determined to keep moving forward with my own plans.
My body was deteriorating quickly, however. I was taking so many medications, doing bizarre and worsening treatments as an attempt to keep up with family, home, work, college, church, small group, and any of my spare time I spent in a zombified pain daze on the couch.
No matter what walking aids I needed, no matter the sickening treatment, no matter what the doctors said about “progression,” I WOULD NOT be diverted from achieving my original goals.
I was in control.
Though my body lashed back at me, I fought and squirmed and raged against it- to keep going on my path.
Surrender is a difficult topic or act for most of us to comprehend.
I have always struggled to relinquish control, so everything about the idea of surrender goes against my nature. I wonder if anyone else reading this can relate to the word perfectionist as much as I could?
Years ago, when I was having ketamine infusions to try to tame my RSD/CRPS pain, I would interfere with the nurse’s vitals setup. In my mind I was helping, but to them I was only getting in the way, of course.
“Do you want to do this yourself?” a nurse once snapped at me.
Oops, I thought. But then…I knew my answer would have been, “yes.”
Why? Why do I think I’m the one who will always be most effective at doing for myself, even when others have my very best interest in mind?
Then 6 years ago, after an experimental treatment they tried on me failed, I suddenly developed several comorbidities which have changed my life dramatically. My pain condition progressed far faster and worse than I ever imagined possible.
They say, don’t let chronic illness take over your life. But when your life becomes about: Breathing. Eating. Drinking. There is no “let” only “become.”
Illness can become your life if survival becomes your new goal.
There are some conditions you can’t fight through. You endure them. They change your body, and you are forced to adapt. You hit your “wall” every time you open your eyes.
Surrender is the choice that my body made for me. It tells me I don’t have another option but to bow to its wishes.
I lay here still and unspeaking, careful not to sway the already offset balance. But the moment I move or eat or swallow or make a sound, my flesh laughs at me. My already swirling, screaming, breath-begging body will burst into flames and melt into nothingness.
The world tells me to push, to fight, to Just. Keep. Going.
But I learn quickly that there is no push in this game. Only tricks, and cheats, and strategy.
It’s a chess match on a board I’ve never seen before, and my opponent is the only one with the rulebook.
Illness owns my body.
There is no free will flesh. There is no- push for one more minute. There is no- if I just take this pill.
This body has been exchanged, kidnapped, swapped for a rag doll.
Once, asking for help seemed an impossible exception only made in the most dire of circumstances.
Now, all of my physical and earthly necessities selflessly come from the hands of those I most admire. The eyes I have always looked up to- now see me at my worst. My body gives me no choice but to surrender to their gentle hands, but my heart is humbled and grateful to receive the gifts of their bottomless compassion. What better picture of mercy than this?
What better picture of grace?
Control freak. Feeling like a freak of nature. My natural systems are out of control. And nothing can be done, but wait. But pray.
Miss “plan for tomorrow.” Plan for your dreams. Dream big. Don’t give up. Your body gives up.
My body forces surrender on its own schedule- though my Creator waits patiently. While my body may act as a prison, forcing the white flag of my systems- my spirit goes of its own fruition. The more I relinquish control, the more grace is endowed.
God is in control, they say. They say it like an empty cliche.
Control is something I have owned. And something that has owned me. And God doesn’t control my will. I surrender it to Him. Child to Father. Tired, weak soul to loving, strength-lending Savior.
In this broken body, I see freedom.
(Re-posted from 2015)
Party Etiquette for a Sassy Spoonie/ Missed Manners
Living with constant chronic pain or chronic illness is no party, but you may have been invited to a few this holiday season. Here are some ideas and tips to help you make it through the festivities as we approach the new year.
1. No Cocktails
I know, I know, at your next party, you may be thinking:
“Ughh, why did I come? How do I even get comfortable in this chair? At least I’m not squished on the couch. Did anyone notice that full body spasm? Oh great. And now my hands are shaking. Better put my drink down before I spill it. At least it isn’t red wine. Of course not, because wine is a trigger food and 8 of 10 of my medications don’t party well with alcohol.”
See, isn’t this fiesta turning out to be fun?! But don’t worry about the NO DRINKING POLICY. Your brain fog keeps you so fuzzy and clumsy on a regular basis that you’ll fit right in with your drunk buddies!
2. Polite Conversation
Look at all of those healthy attractive people around you playing ping pong with their witty dialogue. “Hmmm? What? Oh, no that’s not a fashion statement. That’s called a compression sock. Thank you so much for noticing. Yes, those are my favorite shoes…I guess. I know, I always wear them, don’t I? Ha, ha. You are so observant. You know, you should really go bird watching sometime- I hear that is a great hobby for people who enjoy staring.”
See, you can play this game of witt too. What a wonderful party!
When in doubt, smile.
Always keep them guessing. When your pain is on red alert and your brain is on complete shutdown, SMILE!
It tells people that they can relax and have a great time no matter how sick you are. You can always go to the ER later, tonight is for celebrating!
So flash those pearly whites and watch your friends dance, karaoke, tell work-related stories, and get jiggy. They’ll remember you being a sweet, saint-like creature, and little did they know you were just half-conscious from pain. Talk about a party trick!
Nope, parties just aren’t as fun as they used to be. And please don’t go around asking people what I USED to do at parties… (seriously, don’t). But it’s still great to get out and make memories whenever we are able. And when you are not able, know the party won’t be the same without you.
Merry Christmas, happy holidays!
This is one of my favorite pieces I published in 2014. A snarky spin on the old Emily Post / “Miss Manners” columns from the 1950’s.
Going Dim by Cammie LaValle, Part 1
Part I of II – By guestwriter Cammie LaValle
Remember that light inside of you that used to shine? We reminisce about it in our heads; to that person we used to be. That silent yet screaming conversation in our minds we have on a daily basis. For some, it’s the majority of the actual conversing we do and sadly, it’s only with ourselves. We are feeling ourselves; our internal light; the fire that once helped us accomplish so many things in life, be reduced to less than a flame; more like a sad, almost non-existent spark which could barely keep a match lit.
Sure, there are flickers of hope and tiny little fires at times; but personally, they are getting few and far between. I have not given up all hope, but I am struggling to keep the grasp.
One of my motto’s is “Let Your Soul Shine” taken from a song. How hypocritical of me to tell others to do just that when I am watching, feeling and experiencing my own go darker and darker every day. I don’t mean dark as in evil, although I will admit I’ve had some pretty evil scenarios which I wish would play out in the lives of some of the doctors I have encountered in the last few years. No, I would not harm anyone; but as you read that, I am certain you can recall one of those thoughts that has played out in your mind so detailed as though you were actually plotting a dismemberment. I for one thought a log-splitter would suffice.
As I am writing this, I have backspaced hundreds of times thinking what I have to say or what I feel is not ready to be heard or will be perceived as seeking pity, over reacting, not being thankful for what I do have or God forbid, the “It could be worse” reaction we often get. Yes, we all comprehend that, but more often than not, it is far from a supportive statement as we perceive it. Minimizing our hell is what most of us feel; even though we know most of you mean well when it’s said. But I realized the words I put down, if were written by someone else and read by me, are exactly the words I would need to hear; and yearn to hear. So without a hesitant mind, and the pain jolting through my body and hands, I shall spill the complete ugly truth that I am not shining by any means. I’ve gone dim. This is not news to some; as they know me too well to believe the crap that spews out of my mouth when I say “I’m fine.”
I ask myself daily, how much more can I handle? Do I even want to for that matter? Yes, those thoughts are there when in my dimmest hours. Will I say it out loud? Probably not. Will I say it here, when I know others just like me are reading this; yes, yes I will. I can’t say I am proud of my thoughts, but I can say I am not about to blow sunshine up anyone’s ass; especially knowing the people reading this are struggling right along with me. That’s not what we need and I may very well do it to others so they don’t have to worry about me, but I will not do it to you. I know that sounds terrible as I have more than likely never met or ever will meet 99.999 % of you. Why be truthful to people I don’t know and hide and lie to my own family and friends? I have no clue the rationale behind this and won’t pretend I do either. What I do know is that there is a greater chance those reading this, understand it to their core and need no explanation of the words, the thoughts, the expressions, the pain, the isolation, the self-doubt, and the meaning behind “Going Dim”. I fully understand all humans go through struggles in life and I am not discounting any of that; anyone or any struggle of any kind. I am addressing our struggle.
I am opening up my broken spirit and soul, my tired mind, and using my pain riddled body, to let YOU know, you are far from alone in this battle. And I may be writing what you can’t dare to say out loud, but feel it as if it has taken over your entire being. I know I have read some stories which after the first sentence I felt the lump in my throat. I certainly am not sharing to cause distress or any tears, but if anyone reading this has that lump, let yourself feel the emotion and release some of that internal pain that is eating you alive and has taken over a portion of your soul.
More than likely you have caught on that I have not begun to describe the pain. If you are reading this, you already know how it will read. However, for those friends or family that are reading this who have a loved one suffering, I will follow this with a brutal truth that the one you know, who is suffering, is too damn scared to tell you. Whether it be pride, or wanting the world to believe we can handle this, or the complete farce we muster up in order to appear stronger than we actually feel. Your loved one has gone dim. And you might have as well; attempting to care for them. Addressing the other side of this is just as important as addressing ourselves.
The ME I once was, is still seen by my husband and some family and friends; however, I don’t see her. I feel as if she’s gone for good. I talk with her in my mind and actually pray she will come back, somehow, some way. She could light up a room (from what I was told). She was vibrant, funny, witty, intelligent, strong, hard-working, worthy, helpful, selfless, and although some deep down pain existed as we all have and hide; she was happy. She helped raise 2 children, who she loves. She was a good wife, a good friend, a reliable sister and had worked since a very young age; worked her ass off. Now, the relentless quest for her to return has come up empty. She was me. I was her. We’ve both gone dim.
Where did she go? CRPS (full body), Fibromyalgia in addition about a dozen other health issues; some quite severe, has held her captive and the ransom demand at this time cannot be met. The hope and flicker of light is diminishing. Sure, I say I am hopeful and staying positive, but who am I kidding? It’s gradually becoming such a farce, I can barely hold back the tears when I say I am still positive. It’s a blatant lie. I feel as if I am getting a very real glimpse of Hell.
Ice pick, razor blade, vice, hammer, pins, needles, knife, match, truck, salt, gasoline, fire, electric shock and flames; all of which I feel has been used during this captivity. A scene from a mysterious attempted murder movie in which we wait in the trunk to be rescued. Someone on the outside may not comprehend that comparison, but I, along with so many others; truly feel this. And the trunk is our lives at times. That dim, cold, dark, isolated place, we don’t willingly go to, but find ourselves there, stuck; more often than not. The tools used is what we compare our pain to; as CRPS/RSD plays out such a brutal attack on our bodies daily. As we wait for the ransom, which in our lives is a doctor, a treatment, a cure, we succumb to this attack and 24/7 try to prepare ourselves for the next dreadful blow. I try to hold it in as to not be a burden; not wanting people to see how bad it is. There are times it just comes out, screaming, howling, paralyzing pain to the point I can barely breathe. Arms, legs, feet, back, hips, face, ears, chest pain where it feels like I am having a heart attack, but I know I am not. Then I think, what if I do have a heart attack? If I feel like that daily, if I have one, will I even know? And my hypertension gets so out of control, my neck feels like I am being stabbed, my vision gets blurry, I lose minutes and have lost recollection of hours of time. I get scared to be alone in my own home. This scares the sh*t out of me! On nights the blood pressure is too high and the chest pain is severe, I am too damn scared to go to sleep as I honestly wonder if I will wake up. Yes, that is how my mind works. I pray I wake up. I won’t go into the thoughts and prayers that go on, when I honestly question if my life, as I know it, is actually ending that evening. This is brutally honest and I know it sounds far-fetched to some. But, many reading this feel the same way or have felt the same way. I am saying it now, to give you some peace of mind that you are far from alone. It is not by any means a healthy way of thinking, but it is where one’s mind tends to go at times. I am not proud of these thoughts, but they are true.
Pain changes people. It’s relentless. The beast wins in those moments and all I can do is wait for it to let go of its ever so tight grip of my body. I think to myself during these times, how the hell am I to live this way? How is my husband to live this way, with his wife being consumed by pain, lost herself and her feeling of self-worth? I am not the woman he married. Far, far from it. He is my biggest advocate and has not left my side, although I wouldn’t blame him. His wife is gone. The anxiety, stress and depression that goes along with this beast leads my mind to wonder “when” he will have had enough; not “if”. For better or worse, sickness and in health, meant something to him, just as it did and does to me. How lucky am I to have such a man who took his vows so serious, that as he watches his wife diminish and change into someone he didn’t marry, he continues to assure me we are in this together and he will never leave my side. He is the only one who can make these demons stop in my head. He is the only one who has seen it all and still has faith I will come out of it; come back as the woman he married; come back from “Going Dim”.
What has brought you to this page, is why many of you will understand what I am about to say next. You are dim yourself from disease and pain or you are caring for someone and are desperately trying to find a way to understand and help that person; your loved one. (For those seeking help to care for another – THANK YOU! Sadly enough, you may be the only one doing so for that lost screaming soul).
Too many are left alone and instead of having support in waiting for that ransom, they remain in the trunk; dim, isolated, begging for relief, kicking and screaming to get out; get help and for someone to actually listen. When there is never a response, those broken souls take it upon themselves to put an end to their private mysterious movie which is their life. They don’t think they can handle the next blow, they have been disregarded by doctors, family, friends and in their mind; the world.
Pain messes with your mind. Even those who truly have support; at times feel like an overwhelming burden to everyone, isolated and alone (even if the room is filled with 20 people) and misunderstood, they would rather not be on this earth for one more second of pain or one more feeling of being dismissed by a friend or loved one. That emotional pain alone when one’s suffering is dismissed; as if we are over-reacting to a common cold; could and has triggered people in pain to start planning their demise, as it is too much for them in their broken mind and body to fight anymore. Death, in their mind, however wrong one deems that thought process; is what they are contemplating. If you think this is reaching; just read through posts in some of your or your loved one’s support groups.
Daily, I see people tell people they never met, that they “can’t handle it anymore”, “I just want to end it”. Keep in mind, if you look at their FB page, or Twitter, or recall a recent phone call, most would have just said or posted on how great their day was. “I am fine.” It’s a farce, which most of us continue to do; as to not upset our family or friends with our true feelings and pain, or to not be honest with people we actually know because we’ve been dismissed too many times and are broken to the point that some knowingly make a decision to NEVER again speak to a loved one, hug a family member; and even their own children; as their mind has told them it’s easier to die than live.
How sad is that? Are they selfish? When people take their lives due to pain, any type of pain; they cannot comprehend the ramifications other than they no longer will have pain. So completely torn down, the thought their child will lose their parent, is not strong enough to stop them. How in the hell is our society missing this? How are family and friends missing this? How are people in pain getting to this point? Whether it be lack of treatment, lack of cure, lack of support or the mind games played out in your head when your pain takes over your life; it must, meaning right now, start being addressed.
Are you thinking your life is not worth it anymore? Well, it is. You don’t see it, but others do. And I beg anyone reading this, to reach out to someone. I can almost guarantee these thoughts have gradually entered the minds of your loved one who experiences 24/7 pain; not remembering a day without it. And if someone asks you, be honest. I have uttered the words I’m fine for the majority of my life; over half of which has been in chronic pain. I hid so many things from even my family; out of pride and factors which stem from my childhood, some of my own family do not believe I am in such a state of despair and pain; broken down with a tired soul and body that feels useless. I hid for too long. Yes, it’s my fault for putting on the mask. I was and at times still very good at it. A habit very hard to break.
It’s natural for me to pretend I am okay; for I’ve done it all my life in one way or another just like most of humanity in some aspect. However, I am removing it now and so should you. This does not give us the right to become an un-consolable hot mess of a person; but it does give us power to deal with what is behind the mask; our true selves. It certainly will not be easy, but how worn out are you right now reading this? My soul is tired and there is no amount of sleep in which can awaken it.
“Live without living?” What does that mean? If you ask that question, you have yet to comprehend how our minds work; how we feel & what this has done to us. Or better said, what it has done with the person we once were. The reason I; we’ve gone dim. We strive to live better and we do anything and everything to get there. Find relief, find a new normal, find peace, find understanding, find faith, find God, find a way; find ourselves. I am trying and I have resorted to begging at times just to get a doctor to listen to me. Most ignore it; but I’ve been lucky to find one that listened; one who upheld his oath. One who has promised to help me find a way, a new normal, and a treatment in which I can maybe, just maybe, have a chance at finding myself again. I don’t trust many, but trusted him and have for over 10 years. Due to this trust and mutual respect between a doctor and a patient, I have a chance; a slight flicker of light in my dim world which I am grasping onto so tight, if I were to let go I feel as if I would crumble; again.
You see, although I’ve gone dim like many of you reading this, I also found HOPE and it was due to raising some hell and advocating for myself and not shutting up when I was told NO. I kept going, I kept calling, I kept writing; I kept fighting. I am still dim, but I have seen the flicker of light; that same light which could let “My Soul Shine”. I don’t know if it will, but I’ll be damned if I’m not going to try. I deserve it; as do you.
I started writing this 8 months ago. When I started, I was in my darkest times. I thought about deleting those parts; but that would be me lying to you, and again, as life has taught me, continue to pretend I am okay when I am not. So I hope when you started reading, you felt you were no longer alone in the pain, the dark thoughts, the hopelessness, sadness and you knew, in your heart and soul, there are others like you. And as you read on, you found understanding, a bond with someone you probably will never meet. A bond due to pain, no one wants, but one everyone needs so they don’t feel alone and don’t ever think tomorrow is not worth waking up to.
I’m honored to share this project by chronic illness activist, guest writer Cammie LaValle, featured for CRPS/RSD Awareness Month. She’s not only a personal friend I met in the chronic pain community, but she’s a personal inspiration to me as well as so many others. She leads the charge in fighting campaigns for chronic pain and rare disease causes with the tenacity like none I’ve seen before, whilst attacking her disease with the same vigor. I’m proud to be in the same warrior club with a woman like Cammie, as I have learned much from her. Read more RSD/CRPS articles, see art projects, poems, and survival stories here.
Thank you for visiting and sharing -Mary
Multiple Sensitivities…of the Heart
Breathe. Don’t pass out. Keep moving forward. One foot in front of the other. Pay no attention to your pain. Focus on your breathing. Focus on your legs not giving out. Don’t fall down! Ok, throwing up would be the worst right now. Here come the shakes… Breath girl! The light? Do we have to do the light? Oh no, there goes your head. I can’t see, I can’t see… This hurts too much. I can’t do this. I have to do it. Okay, let’s do it.
This was this morning in physical therapy. My physical therapist comes by once each week. Some days are good, some days are bad. Today was a great day, so we decided to do something I’ve never done before… at least not for almost 5 years: go outside.
When I go to doctor’s appointments, I’m usually taken out from my bed in a wheelchair. I have a face mask on, ear plugs, a head set, and I keep my head down between my knees to keep my blood pressure from plummeting, so I don’t faint. If I’m in the seated position too long, over with my head down, I have to get out of the chair and lay down on the ground with my knees tucked to regulate my blood pressure, breathing, and head pain. (Laying in an elevator or doctor’s office waiting room hasn’t made me any friends-yet.) When I get to the car, I lay in the backseat under pillows and blankets for arduous the drive.
Today, I wasn’t going anywhere but the porch. It was a warm overcast day, and happened to be very quiet on our road. What better day than this to do an “exposure” to sound and light? I don’t have OCD or an anxiety disorder and I’m not in Cognitive Behavioral Therapy, but desensitizing your body and brain to stressors and pain are very similar in traditional Physical Therapy. My PT uses Cardiac Rehab Therapy and Pain Rehab Therapy with me to get me stronger and moving… and it IS working. My fatigue is lessening, I’m stronger, I can tolerate more sound and light than I used to, I don’t pass out like before, and I’m progressing in general.
But today, there was another sensitivity I didn’t expect to encounter…
I bent over my brand new walker, slowly moving out toward the door for the first time, swapping my eye-mask for dark tinted sunglasses. Because I was pretty much blinded by the daylight, I was trying to maneuver awkwardly out the front door. My brother had joined in with my physical therapist to help me on my pilgrimage. I was so focused on all of the physical aspects written in the first paragraph that it caught me so off guard when my physical therapist wrapped his hand around my waste and grabbed my hand to help me out. That’s the moment I choked back tears. That’s the pain that hurt the worst.
It wasn’t the horrible pain in my head, the ringing in my ears, the screaming sound of birds chirping, or my heart racing from trying to be on my feet for too long, it was the caring touch of another person that reminded me so much of my ex-spouse… that almost took me down.
Maybe that sounds creepy to you, but if you have a condition like CRPS/RSD in which people around you are unsure where and how they can touch you, so much that they decide it’s best not to at all, you understand the touch aspect of this. Or, if you are no longer with your once-significant other, you will understand missing supportive touch, like a pat on the back, or an outreached hand when they notice you need help down a step.
Today was 2 firsts. I went out onto the porch successfully. I knocked out another goal! Wahoo! I turned my low pain day into a triumph. It was also a day I realized how much I miss supportive touch. I really want to find ways to incorporate touch back into my life, however physically painful, so it isn’t this emotionally painful to be without.
“Touch has a memory.”
― John Keats
Gift Ideas for a Chronic Pain Warrior
This gift guide is full of links to unique items to help you shop for your young, eclectic friend who just so happens to have Chronic Pain. *Starred shops are run by entrepreneurs with chronic pain.
When I asked my friends with chronic pain what they’d really love for the holidays, they said SOCKS PLEASE! The catch? Most of us have finicky feet and like our socks to be just right. Here are some of the fancy sock suggestions straight from chronic pain fighters:
Smartwool.com has attractive and high quality over-knee socks and knee socks for women.
World’s Softest Socks by Hanes has a nice selection of extra soft and comfy socks and slippers that come highly recommended by the owner of very sensitive feet. See Footsmart for in-store shopping.
Heat Holders come in thermal socks for both men and women, tights, and thermal leggings. If your loved one always has cold feet, these might be their new favorite sock!
Compression Socks are my personal fave for my own picky (angry, control-freak) feet. I love a toe-less compression garment like this thigh high version from Truform on Amazon. Today, you can also find fun printed compression socks, like the mild compression socks from SupportPlus as pictured above. Compression socks help with circulation, swelling, and sensitivity, however keep in mind, not everyone can tolerate wearing tight socks.
For those who have chronic pain in the upper extremities, supportive arm and hand gear can be difficult to find. Period. Throw in the need for protective cold weather wear and add the desire for attractive pieces that fit your loved ones personality…you get the idea. Unlike easy-to-hide protective legwear and therapeutic socks, the arms and hands are not as easy to disguise. Here are a few gift ideas and shops to help you find a protective garment that your loved one would be proud to sport.
These super soft Cashmere Fingerless Gloves/Arm Warmers by Blumen Kinder Seattle on Etsy are fitted, to the elbow (or over), and are available in multiple colors. These were another item my friends said they are hoping they receive for Christmas. I can’t think of anything softer or more luxurious than cashmere…. (Sorry, that was just me luxuriating.)
What about the boys? I scoured the internet looking for men’s long cashmere fingerless gloves/arm warmers and found them at Turtle Doves in the UK as well as the Etsy shop Lain Design in 100% soft gray cashmere! You’re welcome guys.
For those who prefer the protection and swelling control of compression wear for their arms, check out the shop Lymph Divas on Amazon. They make original tattoo-design compression sleeves for women that everyone will envy.
This full length compression sleeve from Juzo is advertised as “extremely soft against the skin.” Made from silicon, it conforms to the skin and moves with it, adding a thin layer of protection and light compression. It comes in various tones including chocolate brown and light beige.
In my last gift guide, I advised shoppers to steer clear of books that tell people with any illness how they can become well again or heal. On the flip side, there are excellent books to read for LIVING with chronic pain, managing the symptoms, and coping with emotions and relationships in the new changing body.
Author/Poet Mary Jane Gonzales is a long-time chronic pain fighter and advocate for chronic pain awareness. She has published several soulful books related to living with pain; my personal favorite (thus far) is *Poetic Devotions for those in Pain, which touches at the heart of life with painful degenerative illness, loss, relationships, and connecting to personal faith in the midst of struggle. After reading, I shared this ebook with several friends, not all of whom had chronic pain and they also loved it and related to it. Available on PDF ebook and Nook.
In 2013, Cynthia Toussaint of ForGrace.org and Women in Pain foundation wrote her inspiring memoir, *Battle for Grace. For more than a decade, Toussaint has been an activist for the rights of people with chronic pain after her own life as a professional ballet dancer was changed forever. Read about her long time relationship with her partner, the loss of her body, and how she found new purpose and passion through her bewildering conditions, including CRPS. Available in paperback and ebook.
The Measure of our Days and The Anatomy of Hope are not books about Chronic Pain, however I wanted to include them here as gift ideas. They made an impact on me in the first years after my diagnosis and I have never forgotten them. Multiple, real life, patient-centered stories depicting how people find hope in the face of rare and terminal conditions might speak to you or your loved one as they spoke to me over 11 years ago.
Or, give your loved one a gift card so they can download the ebooks on their wish list. Visit this page for a comprehensive list of books from the American Chronic Pain Association.
Distraction Therapy Gifts
What most people call “hobbies,” people with chronic pain call “distraction techniques.” These are captivating projects which don’t take too much physical endurance but help us busy our minds and hands as a method to fight against pain overtaking us. Creative art projects, crafting, playing video games, playing musical instruments, doing puzzles, board games, cooking, digital editing, and coloring or painting in adult coloring books are some of the ways in which we might distract ourselves from pain.
Recently, scrapbooking and journaling merged to create a new trend in beautiful artistic journals. People can document their lives by incorporating writing, painting, drawing, photos, and collage. If you know someone who might be interested in a project like this, pick up a Smash Book at a Kohl’s or Wal Mart.
Since we have to spend a great deal of time at home resting and recovering, comfort is key! Think about the coziest, softest thing you’d like to snuggle up with, and that’s a great place to start shopping. I prefer vibrant colors in my room and faux fur anywhere my hands wander.
Check out this Blanket Foot Tent at Sears for $22. If the touch of the linens keep your loved one awake at night like many of us with Allodynia (pain to touch), this awesome tool might help your loved one get some added zzz’s.
On the flip side, a weighted blanket might solve their “comforter anxiety” as my friends and I like to call it. These blankets will stay put and are known to reduce anxiety and increase Serotonin by adding gentle weighted pressure. They are also made with very soft fibers which are attractive to anyone with chronic pain. Find a wide selection of colors at the brand new shop, *Comfort Hugs on Etsy.
There are so many wedges for the bed. Some go underneath our legs, to prop our legs up, special pillows to rest between our knees. We have wedges for our backs, and piles of pillows we shift all around to try to get comfortable. It’s difficult to suggest one kind of wedge or pillow that might add to your loved one’s comfort. However… a giant teddy bear might be a great and unexpected fill-in, and a really comforting and sweet gift, too!
In my last gift list, I noted the wonderful benefits of epsom salt baths for aches, pains, and spams. However, bath soaks are not possible for everyone with chronic pain conditions, unfortunately. This unscented Epsom Salt lotion from Morton Salt allows for your loved one to get the benefits of Epsom without the need to get in and out of a hot tub of water. It is available at Wal Mart and Walgreens for about $8.
Guided Meditations for Chronic Pain on audio is a nice add-on item or stocking stuffer for anyone with pain. Stay clear of the ones that claim to “cure.” Instead, look for guided meditations, mindfulness, or visualizations aimed to help “manage” or “cope” with chronic pain. Mindful Meditations for Pain Relief has excellent reviews online by pain patients. Though I have never tried this particular audio book myself, I do utilize mindfulness and meditation as a coping strategy for my own pain.
If you spend a little time digging, you can find some of the coolest adapted walking aids! The flames cane featured above is from the shop, Fashionable Canes which was made popular after replicating Doctor House’s canes. Similarly, the shop Cast Coverz has a wide selection of fun and eclectic crutch covers and walker covers to reflect your loved one’s personal style.
These items might seem silly, but personal hygiene is one of the most frustrating and tiring parts of the day with chronic pain. Here are a few personal care items meant to help reduce the strain and pain of getting ready. If your loved one has trouble with her hands or arms, this EZ Comb is not only easy to put in, it’s simply a great hair accessory! It does the same work as clips, ponytail holders, and fancy hair combs, but one adjustable hair piece does all the work. If holding a hair dryer and comb is a daunting task, this wild-looking contraption might help her get ready with less pain. If this Soft Hood Bonnet seems too extreme, there are also hair dryer holders available to install. What about a spinning, heated, blowing hairbrush by John Freda? It seems like a must for anyone who has pain or weakness in one arm/hand.
If it comes with a ribbon, shares information about your loved one’s condition, or encourages your loved one, then it falls under the category of “awareness.” They are everywhere these days, and many shops will even customize an item with your particular ribbon color (if you ask nicely).
The Etsy shop, *Tea Bag Embroidery creates sweet little awareness satchels for carrying medication and cell phone. With messages like “Fibro Hope” and “RSD Sucks,” these are truly functional items which spread awareness wherever you go.
There is an array of t-shirts and sweat shirts with awareness ribbons and funny sayings to choose from. Big online stores like Zazzle and Cafepress have a huge selection of awareness apparel, mugs, cell phone covers, etc. with original designs by various sellers. My own shop on *Zazzle.com is pictured above and donates a portion of its proceeds to RSDS.org.
I also wanted to share this new collection of “empathy” cards from *Emily McDowell. If you have never known just the perfect thing to say to your friend struggling with a serious illness, but you want them to know you always have their back, these cards are funny, sweet, beautiful, and say it all. Like this one:
No matter what you decide to give to your loved one with chronic pain, your support and un-moving presence in their lives is immeasurable to them. Your friendship is a gift!
To see funny chronic illness gifts and fantastic adaptive tools to help your loved one around the house, visit my Pinterest boards: Spoonie Gifts and PJ Chic. Read my last gift guide here for gift do’s and don’ts when shopping for your Chronic pals. Thank you for visiting,
Ego, Medicine and RSD
If you are being treated for any chronic illness, this is a thought provoking read.
I would like to add that over the last 11 years, I have watched people try surgical, natural, and sometimes whacky treatments to find relief. So often, it was the most unlikely vitamin or oil that would finally cause the effect they had been searching for. That is why I really appreciate this writer’s view.
No, this isn’t a blog bashing your doctor’s sh*tty bedside manner. It’s also not about the doctor who makes you feel like you don’t understand your own condition (even though you have a feeling you “get it” maybe more than she does). I could blog about those things. I could blog about those ad nauseam. I will spare you my past frustration. The ego I am thinking of is ours – the patient’s.
I think in RSD we can hold ourselves back. And I think ego is the culprit.
Often we won’t entertain the idea that something we are doing or not doing just might impact our health. We believe in a pill but not healthy food. We believe in ketamine but not meditation. When we’ve worked out and lost weight, then we take credit. That we do. But in terms of a medical condition like RSD, it seems…
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“A Lonely Life” by Mary Jane Gonzales
I’m honored to share this from poet, writer, author Mary Jane Gonzales’s new blog: MyInvisibleLife.net
Once upon a time, in my real life, I had lots and lots of friends. Despite being handicapped, life was full. Even when handicaps grew to the point of disabilities and everything was more of a challenge, there was still an abundance of events to attend and activities to do.
But over the years, an alternate life set in. And, strange as it seems, there were levels leading up to that point. Starting off normal, becoming handicapped, becoming disabled, becoming homebound, then becoming bedbound. Though I’m very grateful this alternate life occurred over time, rather than all at once, the fact remains it takes a lot of adjusting. And, in that journey, you’re very much alone. No-one is walking in your shoes – and, even those walking alongside you, who likewise grieve your loss, cannot relate to what you experience. And, sadly, the not understanding often leads to abandonment. Not that it’s intentional, but we live in a microwave society that expects quick results. They can’t comprehend (or tolerate) unresolved issues. Chronic pain or lingering illness is unfathomable to most; and would be to us if we weren’t living it. And loss of health is not the only reason for them (or us) to retreat.
Other reasons could be depression that accompanies chronic illness, maybe making us less positive, not seeing the glass half full as much as we had before. Or us not calling them as much as before because there’s nothing new or good to report. Unfortunately, that can be translated to them as a loss of interest. And them not calling us anymore feels like rejection or abandonment. So, for me and countless others, the new reality is lacking someone to visit us or someone to call for a favor. Instead, there’s a host of virtual friends who truly understand what you’re going through and may become treasured friends. Yet, the loss of longtime friendships is painful and the loss of visitors is lonely. I know that everyone’s at a different place in life, and some may not be here yet, just as I was not here yet.
But, though it’s taken much time for me to get to this point, I have arrived! Thankfully, I’m very blessed in so many ways. I have my family, my faith and a couple of friends who, though not nearby, love and support me. I keep myself busy with various projects and enjoy life as much as possible considering the circumstance. I can’t deny that an invisible life is a lonely life. Lonely being a relative term, you could be at the beginning stage where you can no longer work and are no longer in the mainstream of life. Or, you could be acclimated to being at home and still be receiving visitors.
Whatever point each of us is at, we need to be able to entertain or occupy ourselves, rather than expecting others to meet that need. So much is learned from chronic illness, with self-discovery being one of them. Though I would not have chosen this life of illness, neither could I have known that good could come from it. Despite the hardship or trauma of disease, in the end, I suspect that most of us have been made better by what we’ve been through.
Find her books here available on BarnesandNoble
Rare Disease Day
One of my favorite writer/bloggers, Mark from The Gad About Town discusses the importance of the upcoming Rare Disease Day. He shares his experience with his own rare disease, SMA and how it effects his body.
I live with my own “rare” illnesses like POTS, CRPS and IH to name a few. Many would argue that these are not rare given the estimated number of people living with the same illnesses. In the medical world however, these conditions are so rarely known.
My friend and blogger Mark from The Gad About Town so eloquently explains what it means to have a “rare” illness, and why we share information on occasions like Rare Disease Day.
One friend has antiphospholipid antibody syndrome, which causes blood clots to form in any blood vessel in the body and leads to transient ischemic attacks (TIAs), or what she cheerfully refers to as “mini-strokes.” (Most people who have recurring TIAs call them mini-strokes; my friend has the happy quality of coming away from hers with anecdotes about the experience that make them almost sound like something I want to have, too.)
One of my closest friends has fibromyalgia, a disease of chronic pain with a “here today, gone tomorrow, here again and worse” pattern-less pattern of symptom presentation that sometimes renders her almost breathless with the pain. Everyone experiences physical pain, but a full-body stabbing pain with no traceable cause, and thus not many ways to treat it?
Other friends have multiple sclerosis, one whose symptoms are affecting his balance and control of his legs, and one whose hands are…
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