Most if you know I have a chronic pain condition known as CRPS/ RSD. (Chronic Regional Pain Syndrome or Reflex Sympathetic Dystrophy). Most of you only know about it simply because you’ve heard me talk about it and perhaps Googled it. Some are also cursed with this Monster. Then there are some who deny it exists….perhaps this will give those who doubt, deny and don’t believe some valuable insight into CRPS/Chronic Pain.
CRPS is a living hell. It is characterized by massive swelling, intense and unrelenting pain (on a scale of 1-10--I live at an 8 most days). There are changes in the skin & bone; with the bone actually deteriorating as the disease progresses. The pain CRPS sufferers experiences is a fiery, burning pain that I equate to Napalm coursing through the veins on my CRPS limb. I used to get massive, fluid filled ulcers--thankfully that "stage" has passed. The slightest breeze brings me to my knee which is one reason why I keep my CRPS arm covered. The other reason is that I despise looking at it. It is scarred, purplish/grey in color and has the appearance of corpse flesh. It is not my arm—it is ugly.
I live in daily fear of this monster spreading to somewhere else in my body. It is inevitable. I have already lost most of the use of my right hand....all because of an injury (shattered ulna and radius that nearly severed the muscles to my thumb). It was a preventable injury that was not my fault but I pay for it every single day. I have what I call a “crab pincher”, that’s the extent of my mobility.
THE SUICIDE DISEASE
This disease has earned the dubious and somewhat morbid title of "The Suicide Disease" because there is no cure and the pain is hell. On the McGill Pain Scale, CRPS ranks higher than amputation of a digit with no anesthesia—even higher than childbirth and the pain is unrelenting.
There is no treatment that is 100%. Sadly many take to committing suicide because they just cannot take the pain anymore. It is now virtually impossible to get a prescription for pain medication thanks to drug abusers. A crackdown on doctors by the DEA makes entering a pharmacy and handing over your prescription an act of humiliation. You will be looked over and degraded. The pharmacists and techs will whisper and then they will loudly announce that you “can’t fill this here.” Every 30 days you must endure that hell.
The people that truly need these pain medications just to get through each day and be able to function are faced with a stigma of being an "addict". Because CRPS and chronic pain patients can’t get the much needed meds, they can't deal with the labels and stigmas; they endure escalated pain from the stress that suicide ends up being the only viable option in some patient’s eyes. I will be the first to admit it that sadly, there are days when I can relate...and I won't lie--I've considered it. If you have CRPS chances are suicide has at one time or another crossed your mind.
Already this year the CRPS/RSD community has lost several members and on 19February2014 another CRPS angel took flight. She couldn't take another day of pain, another day of people doubting her.
So yeah....it’s nicknamed the Suicide Disease for a reason but somehow we HAVE to get the words OUT about how devastating this disease truly is. It should be renamed "The Domino Disease" because it topples everything in your life.
EVERYTHING.
Ignorance. With a chronic disease like CRPS people tend to be uneducated & unfamiliar with the disease. They doubt you. You may look "normal" on the exterior but it’s all a facade. Some CRPS/chronic pain suffers rely on wheelchairs and use handicap parking placards have experienced people leaving hateful & very hurtful notes on their cars because they believe these people who “appear to be normal” are lazy. It’s vicious. It’s hurtful. It’s inexcusable. These people who judge are ignorant.
Inside a chronic pain patient you are enduring hell but there's a part of you that wants to be treated with dignity. You feel the need to appear "normal" to maintain your self-esteem. You want the world to see you as human--a REAL person beyond the disability. But that, in itself, is a catch 22 because if you don’t LOOK sick then you must be faking!
Burdens. With CRPS you feel like you're a burden to those you love; chores, medical appointments, flares, missing your kids events and milestones, there's attitudes and financially CRPS disease takes a huge toll on your family's finances (Copays, travels, medications, inability to work the list is endless.) One of my topical creams runs approx $2800.00 a month. Seriously, WHO can afford that?!?
Some of us do support the legalization of marijuana for medical purposes; please don’t assume we are druggies. We simply are out of options and are willing to try whatever it takes.
We don’t like to ask for help but there are times when we need that help and we need the support of family and friends.
CRPS is a lonely disease. You become house ridden-afraid of the crowds who might accidentally touch your CRPS limb and cause you to crumble and cry. No one ever wants to have the public see you scream and cry-its humiliating. When the temperatures drop, CRPS sufferers cannot leave home. They become human barometers and there are times when a weather change can make their condition excruciatingly painful.
Most of the friends you HAVE become the friends you HAD. You cease to exist in their world. They stop coming around-usually becoming only FB "friends". The invites cease, the phone stops ringing...it just happens--they vanish.
Then there's the family member(s) who doubt you. They claim they just don't want to hear it so they stop calling, stop talking. Would they treat you the same way if you had cancer? Nope. Maybe, like in my case, you may’ve even helped a family member through cancer treatment only to have them turn around to tell you that they “Don’t want to hear about it” that they are “Sick and tired of the complaining and negativity”. That cuts like a knife knowing that you were once the person who would drop everything to help a friend or family member in need (travel 1000 miles, cook, clean, shop –become “Rosario”. In my case, I’d take her to doctor appointments, and send care packages of hope—just be a good friend) and they turn their backs on you.
I am not denying that cancer is an ugly beast but at least cancer is recognized and gets research while CRPS/Chronic pain does not garner such attention. CRPS doesn’t have the marathons, the fundraisers, the research that impressive pink ribbon campaign. We have pain and only a handful of doctors who try to make a difference. Every day is a battle to get insurance to approve a new experimental treatment or an infusion that may or may not help. The daily struggle is additional pain and adds to the stress which makes CRPS flare and worsen.
Life has changed. With CRPS/Chronic pain no longer can you enjoy the things you once did because the slightest brush, the gentlest breeze, a simple touch can render you a tearful, screaming mess. Sufferers are incapable of doing the things you once loved. Gardening? Nope. Water skiing. Forget that! Working out? Hell no. Yoga? You've got to be kidding! (That balance thing is a bitch with only one hand) Painting? Nu uh. (remember, I’ve lost my dominant hand). I can’t win for losing in the activity department,
Even simple tasks like getting dressed, housework, dishes and washing your hair become an ordeal. Often you will hear an analogy about “SPOONS”. In it the author, who suffers from Lupus, describes being allotted a certain amount of spoons to get thru the day: One spoon per each activity. Getting showered? One spoon. Getting dressed? Another spoon. Eventually you’re left with a dwindling amount of spoons to get through the day you must choose wisely or you pay a heavy toll…..sounds like a game but it’s a reality for many of us. Clean house or make dinner? Go to my son’s soccer game or walk the dogs? It’s one or the other but never both. (*I’ve included The Spoon Theory written by Christine Miserandino at the end of this article*)
Sleep? It becomes a rarity. Even with the sleep medications they prescribe, it is nearly unobtainable. Pain flares can keep you awake for days and that’s no exaggeration. There was a period of nearly 18 months where I couldn’t sleep in bed with my husband of 20 years because of massive flares. I sat upright in a recliner, sleeping for 20-30 minute stretch on and off for weeks on end. For those unfamiliar with the term flare
flare (flâr)
v. flared, flar•ing, flares
1.v. burn with a sudden intensity.
2..n. Medicine An area of redness on the skin surrounding the primary site of infection or irritation.
Flares come with the territory of CRPS. They are brought on by weather changes, stress, anger, sleeplessness. A seed of doubt can fester and bring on a flare. A flare is always marked by an increase in pain, perhaps CRPS lesions, spasms, contractures. Relaxation techniques such as biofeedback, “square breathings or guided imagery can help with the symptoms of flares. It always helps to have fallback methods to distract the brain and there for help when a flare occurs.
Moods. With CRPS/chronic pain mood can change drastically, from minute to minute. You always try to hide behind a smile but there’s always that tipping point when it becomes too much to bare. They say you always take it out on the ones you’re closest to: spouse, loved one, roommate, children they all take the brunt of your anger, loneliness, depression & grief. I’ve even had mini-meltdowns in front of my doctors---it’s not uncommon. Frustration builds and like a boiling kettle, the steam NEEDS to escape. There’s no shame in it, as long as you say you’re sorry and talk about what you’re feeling.
Medications. Sometimes the medications are to blame for your emotions. It’s frequently one of the side effects. Other side effects include weight gain, drowsiness, dry mouth, constipation, nausea, liver damage, heart palpitations; blurred vision.....the list is endless. It’s a joy. There is also something called “narcotic bowel syndrome” which can occasionally happen when you are on narcotics/opioids for long periods of time. It’s intensely painful and one of the many “perks” of enduring CRPS/chronic pain.
The point I am trying to make is, please don’t *THINK* you know what CRPS/Chronic pain is. ASK US! There’s so much we need to share and make people aware of! This isn’t a shameful disease that doctors have just coined—it’s been around since the Civil War! At one time it was referred to as Causalgia.
We want to let people know what CRPS is but we beg of you, please don’t believe for even one moment that it this imaginary! Please don’t assume. Please don’t play Doctor. That does more damage than you could ever know! While we appreciate your hints and tips, we are offended by suggestions that it’s “All in our heads”. That we need to get out and exercise (Most of us participate in PT/OT). Please don’t go all “Dr. Oz” on us and suggest vitamins or a massive diet change. We ask that you don’t exclude us but also don’t take offense if we just want to stay in. Come visit us! Watch a movie with us, play cards, a board game, sit and talk. We don’t want your sympathy but we would like your empathy.
Please, I beg you, don’t talk behind out backs.
Please.
The Spoon Theory
by Christine Miserandino www.butyoudontlooksick.com
My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.
As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?
I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn’t seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.
As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.
At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.
I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.
Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.
She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?
I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.
I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.” I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.
I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s “spoons”, but just think how hard tomorrow will be with less “spoons”. I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on “spoons”, because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.
We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.
When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.
I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared.”
Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”.
After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can’t go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”
Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my “spoons”.
© Christine Miserandino
