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.
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
After many years of pain I then came on a time of suffering so unforgiving, it appeared my body would not make it out alive. But finally, I feel an awakening is upon me. In some ways, I believe my brain is renewing itself.
The putrid smell and taste of physical rottenness dissipated. The illness and ongoing pain have not left me by any means whatsoever, yet over this past year I have felt a change occurring inside of my mind. Maybe a transformation.
I did not realize how large a gap I had put between myself and my body these past years. I suppose the traumas experienced under medical care contributed to my drifting. My complete and sudden loss of physical independence surely didn’t help. However, there was no crueler attacker than my own body. To endure this unending physical pain and other debilitating maladies, I must have cut so many ties between me and my lump of person. To live under a physical betrayal so strong you realize no sense of personal willpower can guide the outcome- was an enormous blow. The only way to survive it was to drift beyond my physical self.
~Free My Self~
After the damage to my brain.
After disengaging from my great betrayer: my body.
After the pain went from unspeakable to so immeasurable,
I could no longer speak.
After there were doctors who were unafraid
to use uninvited hands on my body in its weakened state.
After family members had to dress and clean my flesh.
Yes, “my self” liberated from “my body.”
It had to, you see?
This recent awakening began with feeling present again. And new creative thoughts and senses followed. More than my only thoughts, “just breathe, drink, eat.” After years of survival alone, something new surfaced, like a tiny green sprout pushing its way through heavy concrete.
For the past few years, eating has been an uncomfortable challenge and chore. Although I have little appetite, I notice the smell of foods with a new curiosity. And my tastes have changed. I favor different foods and savor scents, flavors and textures I never enjoyed before.
All of my life I have been a sort of “Tom Boy.” Collecting bugs and rocks as a child, preferring to play outside with boys, spending far less time thinking of my appearance than most girls and women it has seemed. The only lotions or perfumes I own have been gifts. But coming into this renewal of myself, I have become acutely aware of my skin. For so long I didn’t have any connection to my flesh-I have even detested it in some ways. The betrayal, the dying, stinking body I could feel slipping away from this world. But it fought. It held onto life! And now, I dab a scented lotion onto my living body in appreciation. I inhale the mild fragrance all day knowing I am the bearer of this pleasant lingering smell.
When did my eyes become attracted to jewel tones like fuchsia and purple? I long to shop for clothes and home decor some day. What!? This is unlike me altogether. Then, as I practice my handwriting, it appears much more feminine than before (my scribble used to be a family joke). Reuniting with my body has brought about a womanly change in me. And I do feel different. Aware of new things. So much has occurred; I don’t think I can go ever back to being that person I used to be. I may as well transform into someone new.
My brain is making connections and is attempting to make friends with my flesh once again. Obviously, there are some new connections, as well. It is challenging to make friends with a body that constantly bites back, but some friendships are difficult yet still rewarding, right? I’m learning a lot about Neuroplasticity and how much the brain renews itself. I hope in time I will be making even more transformations. Who knows what other discoveries I will make along the way and what new connections I might find.
Please visit her enchanting shops of original prints and leather goods to purchase something beautiful for your home or gifts!
This entry has been included in The Spoonie Daily online magazine!
I’m not Jeff Foxworthy but some things about being health impaired are so ridiculous, we might as well try to laugh. Here are a few I thought of along with some additions from my Spoonie friends. Please share yours in the comments section!
You Know You’re a Spoonie When:
-You have more cute socks and pajamas than sexy lingerie’ and heels.
-You are on a first name basis with all of the local pharmacists.
-Your family uses YOU as their excuse for getting out of things they don’t want to do with other people.
-If a stranger comes to your front door, you just hide until they go away.
-You have more salts in your bathroom than the DMV road crews in the winter.
-Your spouse/partner fills your meds for you as a romantic gesture of his/her affection (goodbye flowers!).
-You have become mysteriously artsy/crafty over time since diagnosis (was increased creativity one of your symptoms?).
-Your doctors and favorite nurses are on your Christmas card list.
-You know where all the elevators are wherever you go, yet somehow they always end up super far away from your actual destination (what is that about anyway??).
-Your pets seem to have a better understanding about how you are feeling than anyone else.
-Your loved ones have a favorite joke about your disability that makes you laugh. When they say it in public, people think your loved ones are horrible.
-You have more hair in your bed, in the drain, and in your brush today than is actually on your head!
-You start to talk to your Spoonie friends online more than you talk to your friends and family.
-You’ve learned so much about medicine that your doctors talk to you like a colleague instead of a patient.
-You’ve developed heightened super-sonic senses. You’re sure you are a super hero and keep looking for a lit up spoon signal outside. (To the sick cave!)
From my Spoonie friends: You know you’re a Spoonie When…
-All the people who work at the drug store and pharmacy know you and your family by name. -Molly Williams
-Whenever you are in public people stare. You are starting to get a complex that you have grown extremely good looking. inspired by –Living Life Beyond Disability
-You joke about going to see your “drug dealer” a.k.a. your pharmacist. -April Hughs
-When I rate my pain 1-10 and 7 means I’m having a GOOD day. -Keely Blackburn
-You know all the different medications and their side effects. -Julie Pierpoint
-You have to bite your tongue when a friend keeps complaining about his/her allergies. inspired by –Sick and Sick of it
-You talk to your doctors, nurses, and pharmacists more than you talk to your own family! -Allisin Wonderland Hatfield
-Your deaf and blind dog thinks your crutches are trying to attack him! -Tegan Bert
-You go to hand your pharmacist the prescription card and she says “Nah, I remember you have one of those.” -Christine Brannon-Miles
-You make fun of the television commercials about medications that “help” symptoms like yours. inspired by –My Fibrotastic Life
-When your mum says you will never get a flu because all of your meds will probably knock it out of your system first. -Marika Dolinski
-You use ferocious animals and monsters to represent your illness. –inspired by Elle and the Auto Gnome
-You are so tired of explaining what’s wrong with you that when anyone asks, you distract them by responding: “where did you get your hair cut?” or “do you garden?” -Melanie Barker
What are yours?
If you enjoyed the above poster or want to know what a “Spoonie” is, read the article it was based on: “10,000 Spoons, If Only! Why the Chronically Ill Love Spoons”
This was featured on InvisibleIllnessWeek.com!
I cannot yet write about my years of ongoing migraine. I really appreciate this writer for being so candid and provocative about her own migraines.
*Personal Post – Writer getting real – Longreads*
© All Rights ReservedKim Koning.
The soldiers are unseen
Camouflaged in skin
Their weapons are lethal
They are elements of torture
They have captured me
Stretched out on a rack
Every muscle screams in protest
Every muscle held in a vice-like grip of agony
My jaw is locked shut
My eyes are blinded as the blades enter
My mouth is slack with pain
My fists tied down, tightly clenched
The torture has only just begun
My body fights to find an inner strength
The needles pierce the back of my neck
I am held in place, too weak to struggle
I try to call out for mercy
I am ready to confess anything
The needles enter my skull
There are hundreds of them
The prison is too bright for me to see
Shadowy figures surround my body
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