Positive Thinking vs. Healthy Coping in chronic illness
What is the difference between positive thinking and healthy coping?
“Keep thinking positively!”
“Keep your chin up!”
These are very common cliche responses we hear from society as individuals with ongoing health difficulties. They aren’t incorrect responses, but when those responding seem to believe this is truly how we handle the horrible pain/illness, terrifying future of further health concerns, and crushing regular losses which all come with long-term illness, then encouraging “positive thinking” alone can have quite a negative fallout.
For example, if one is in severe pain (meaning pain worse than a fracture or pain worse than childbirth, but constant, daily, and indefinite) after years, with treatments only failing, and close friends continue to say, “stay positive” as their only source of inspiration, will those words be uplifting over time? No, the attempt at encouragement over time will add to your feelings of isolation, making you feel increasingly deflated, rather than the intention of making you feel more positive, optimistic, and empowered.
Would you say, “suck it up” to a friend who is grieving over the loss of a parent? I certainly hope not. Essentially, this is the idea surrounding “positive thinking.” The concept that the more we “suck it up,” the better off we will be, and the stronger we are.
PS, Our bodies work exactly the opposite of this construct.
The more we avoid pain, the more we distract ourselves from our true emotions (not negative emotions, but real emotions), the more likely our bodies are to feel the stress fallout and rage against us. One with a chronic disease would do well to minimize stress; we know this from immense research (and I can tell you this from my own personal research on chronic pain and chronic illness!).
Minimizing stress is not equal to avoiding difficult emotions or distracting from pain. We have to face our pain and emotions, recognize them, meet them, and accompany them through our lives. They won’t allow us to abandon them, and we know that trying to do so only causes added difficulty down the road.
In Positive Thinking, saying “sure, I’m doing fine” may make others more comfortable temporarily, but it is not necessarily “healthy” for you or for the relationship. Positive Thinking encourages us to become more closed off, in turn others also allow more distance to grow until the relationship diminishes. They realize everything is far from “fine” but both take part in a ritual of pretending everything is wonderful because it’s far more comfortable than confronting the reality.
“Healthy coping… differs from the popular notion of “positive thinking.” It implies the capacity to tolerate and express concerns and emotions not just the ability to put anxieties aside. Being able to discuss the anxieties, uncertainties and fears, losses and sadness that usually accompany severe illness is generally helpful, despite the pressure commonly exerted by family and friends for the patient to always “keep a positive out-look.”25 “Positive thinking” may represent an attempt to avoid confronting the distress of chronic illness, and doctors who care for these patients and their families are not immune to such patterns of coping.” Quote from a study in -Emotional Demensions of Chronic Disease
So often during the course of chronic disease, we have to make choices between the temporary comfort of others, and protecting our own welfare. Regularly, our bodies make that decision for us and force us to miss out. Especially then, healthy coping is paramount! It helps us re-gain some footing again. The openness in healthy coping encourages sharing, allowing others around you to understand where you are, what happened in the situation, how they might play a role in being there for you, and how you can be there for them. It lets others know you aren’t too fragile to listen to them and what they are going through, either. Most likely, those around you are feeling helpless, and would like to be there for you, but don’t know how- or how to ask. Being specific in our needs can help us find our own voice, and being more open also can help others who care about us join in on our “support team.”
Fair warning, most will not know how to respond appropriately, but you may be surprised who is game to see how they can be there for you in big or small ways. In being more open, you may also find that your example sets off a chain reaction in others to become more open with you in how they are doing as well. Healthy coping is so much more contagious than positive thinking, because it encourages support, connection, and community!
Isn’t positive thinking the same as optimism? No. Optimism has more to do with responsibility, letting go of guilt, and looking to the past, present and future without seeing yourself as a burden. I recommend reading the book, Learned Optimism by Martin Seligman.
Healthy Coping differs from Positive Thinking in that healthy coping requires us to lean into our feelings- both physically and mentally. Checking in with ourselves periodically, and then making minor adjustments to our lives to course correct for better balance. This may mean you need more rest, more exercise, more time with friends, another visit to a doctor, see a psychologist, open up to a good friend, eat differently, spend more time focused on your spiritual life, take better care of yourself, etc. Chronic illness requires us to make these adjustments frequently instead of thinking everything is going to work itself out until the ignored symptoms or stress build up. Healthy Coping may be the more deliberate, mindful path, but it is the path of self care instead of conveying a false smile.
To start making these adjustments, we can ask, “How are you?” instead of “Are you ok?” A yes or no question forces us to choose only negative or positive, however, healthy coping encourages others to share and touch base with one another and ourselves- this is how support and compassion are built. We don’t have to choose sides in healthy coping. Try not to think of your days as being good or bad, black or white, suffering or overcoming, but instead- working to find balance every day, always learning from your body and those around you, and doing the best you can now, in this moment.
Gear for POTS & Chronic Migraine Pain
Because of my chronic monsters, the upcoming “Miracle Day”(aka wedding) will require some special technology. I’ve been prepping for about a year, and have done some research to quiet my critters. Would you like to see some of the gear I’ve found?
Even though I am still uncertain how my body will react at the wedding and how long all of my issues (see my about page for specifics) will allow me to stay at the ceremony, having this “armor” makes me feel more ready to attempt this ‘impossible’ feat. I know everything will be in the red zone, but my sister is counting on putting eyes on me when she is at the alter. She needs me there, so these little gadgets are going to add minutes to my miracle- and some extra minutes are all we need, baby! A good friend of mine thesickdiva blog said she’s praying my endorphin’s will kick in and I’ll be there for an hour instead. That would be amazing! Thank you, Jenny!
Ear plugs– I have so many different kinds. I usually use the soft foam kind for comfort. PS, these come in many sound-blocking capacities. But for this special occasion, I’ve purchased Decubulz which have the highest NRR available. I have yet to mold and fit them, which will take help, and boiling water, so we’ll see if they work as well as advertised. I’ll let you know how they work out.
Headgear– Bose wireless sound canceling headset has been on my wishlist for a long time. They have been such a blessing since the holidays! (Thank you Aunt Darlene.) I don’t know how I ever lived without them. Before, I was using gunrange type headgear, and they were not only very tight and painful, but they didn’t offer much sound protection. The Bose are the best sound protection available, and much more comfortable resting on my neuropathic head and face. I like that I can wear them as needed, and then I can flip the switch on the side for the sound blocking feature before my head explodes. It helps turn down the pain and some of the fight or flight sensory overload symptoms. I wish it blocked out all sound, but they are a big improvement over any other headset I’ve tried.
Theraspecs Sunglasses– I did a great deal of research on migraine reducing shades before deciding. Many of my friends have prescription eye wear for light sensitivity, but a physically wearing trip to a new doctor plus lights being shone in my eyes for new specs was off the table for myself, though if you are reading this with headache disorders triggered by light, prescription shades is one of the options. I was relieved to find there are many kinds of shades to choose from. My friends said to look into Serengeti shades, sporting eyewear, and rose tinted lenses. I did. I soon found this company, Theraspecs, which was started by a woman whose severe migraines are brought on by light. She and her husband make lenses with several kinds of filters, (including FL41) and will even custom make your shades if you send in your favorite frames (winning!). Since getting mine from Theraspecs, I notice a big difference in screen brightness from my laptop, Kindle and phone. I’ve yet to try them outdoors, but I’ll be giving them a spin in a couple of evenings! My Aunt also got a pair of theraspecs custom made, so we will give you an update on head pain reduction. We were both very impressed with the level of communication from the company, and customer service.
Bride’s Maid Dress– We were told to pick our own dresses (with criteria). I absolutely love the one I found. As you can imagine, I have not purchased any (non-pajama) clothing for a very long time. I’m so excited to wear it! I haven’t worn makeup in quite a while, either and found some fab red lipstick that I hope will accentuate my pale…ehem porcelain complexion. (The sale price is not what I paid.) ASOS is one of my favorite online clothing shops for gifts and “lounge wear.” Here are one of my accessories that I’m excited about wearing as well; it’s both functional and fabulous. If anything else, I will be put-together on the outside! (wink)
Reclining Wheelchair– Such exciting news!!! Even though last week was one of the worst in a long time (that’s saying something folks!), this wheelchair was such an amazing gift to my life! I’m so stoked about this! Thank you for celebrating its arrival with me, and allowing me to share it with you all!!! My reclining wheelchair was not only approved by insurance, it was already delivered! Isn’t she pretty? We usually have to rent one, and now, we have one for keepsies. As I’ve shared here before, my Postural Othostatic Tachycardia Syndrome (POTS) only allows me to sit or stand upright for a couple short minutes before going into Pre-syncope (starting to get sick and pass out). But if I’m in a reclining position, my POTS will stay in check. That is a huge relief! If I am forced to be upright for more than I can tolerate, my health can go into a setback for a while. I know this wheelchair will be an awesome step forward on my journey, and hope it leads to great progression for my life! (If your insurance has not approved your chair, try Invacare on Ebay for new, inexpensive, high quality chairs with free shipping.)
Nurse/ home health aid– I’ve had a home health aid come every week for the last several months (game-changer), and she will be assisting me at the wedding. Because of her help, no one in my family will be distracted by me, and they can focus on my sister and the wonderful event
! A great relief to both me and my sister. When I told my sister my aid would bring me to her wedding, I could tell it lifted a weight off of her shoulders. This newer aid has never taken me out of the house, so I admit that I am anxious about that. My ex-husband is really the only person who was fully aware of all of my transport issues and needs when we would attempt to go to doctor’s appointments. I’m putting a lot of trust in her professional ability and experience with other patients. She hasn’t failed me yet!
Blood pressure cuff– This is just my boring reliable old blood pressure cuff from Walgreens. We got it way back in 2011 when my one monster (RSD) invited a whole crew of critters to the party. I don’t sit around measuring my BP for kicks, but we’ll bring it along in the car just in case.
Though I wish I had a temperature controlled, sound-proof bubble I could participate in the wedding through, I can only prepare so much. We’ve been planning for over a year, I’ve been in physical therapy for months, and I have every item to make my body as cooperative as it will get. If I had not gone through all I did this past year, I don’t know if I would be ready for this day. That is a ray of sunshine coming through these clouds because I love my sister more than anything.
Just as my sister is planning all of the details to make the day as beautiful and memorable as possible, I’m planning for a smooth event as well. We can’t approach it with fear. No day is perfect, but how we enter into it mentally can change the memory completely. For me, the truth is that it will be painful and frightening. I will have to recover for a while afterward. If I can go to be present for their vows between 10-20 minutes, that would be so incredible! It will be a triumph and so precious to be there supporting my sister, her soon to be wife and our families.
I’m so honored and privileged to be her maid of honor. It has been a joy to contribute to her wedding in my own ways. I have some little surprises for her and her bride for the day of, which I’m getting excited for. It has been very difficult, sometimes heartbreaking (for both of us) not to be involved like I would be, like I SHOULD be. That river runs deep for us both, but more importantly, so does our relationship. For the ceremony, I don’t know if anything could stop me from being there in any way I could be. She is my heart. Of everything that has gone on in my own life in the last few years, wedding planning has been such a bright light I am so grateful to be included in. See you on the flip side! Thank you for rolling along with me.
Dear Body, I’m breaking up with you
There are many things you can forgive your body for, but there are moments, relationships, days in life you miss which you will never get back, unforgettable, unforgivable events you are denied in the face of disability. My body is broken, and she continues to break my heart.
This is how those of us with chronic diseases struggle so deeply to have “self love.” Trapped inside bodies that attack us, and hearts which shoulder the guilt of our loved one’s pain from the hurt our illnesses have caused- child, love thyself. Love your abuser. Forgive the one which harms those you love the most. Forgive, forgive, forgive….
Body, you have taken my choices from me all of my adult life. Body, you are the abusive relationship I have never been able to flee. Body, you have stolen my health, my career, fun, freedom… my dreams. No permission was granted to you, yet you take all you touch. You are a jealous, volatile disease, and you only care about your own needs. I have suffered abuse and trauma at the hands of doctors on your account, though, you still batter me without compassion. I’ve been abandoned and made to feel worthless, INVISIBLE because of you body; I’ve had enough of your games!
Body, I break up with you. Sorry, not sorry.
I tear you from my soul and leave you. I will still care for you, because I am obligated. I am bound to you in ways I cannot choose, but I will no longer adore you. I will not call you my own. We are committed to one another, but I turn my back to you, body. From here on out, you will be “Body” and I will go forward being Me.
This is my self love. This is my self compassion. This is my choice.
I rage against your victimization. Your assault on my essence is over. I choose to make my life despite you, in spite of you!
I choose, I choose, I choose.
My flesh and bone surrenders, but my spirit rises up! Your reign, your emotional and psychological torture is over. Call it dissociation, call it compartmentalizing, call it what you will- it IS a detachment, and it is necessary.
I sign the papers and I box up your things. You can live in the basement and I will now and forevermore preside upstairs, in charge of THIS HOUSE.
Sign here X _________________
Please support Rare Disease Day on February 29th. www.rarediseaseday.us
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
My War with Gravity #POTSproblems
This time last year, I published my first and only post detailing life with POTS and my recovery process, My Toothbrush, My Trophy. One hour after hitting the publish button: BOOM, I was back in the hospital for more POTS shenanigans. It felt like some kind of blog jinx! October is POTS Awareness month, and last year my body threw a parade in honor of it.
For me, the thing about POTS is that I didn’t know there was an illness I couldn’t fight my way through. With chronic pain, I had forced my body into submission for so many years- all of my adult life in fact. Whether I needed to utilize walking aids, medications, treatments, or therapies, my crippling pain hadn’t kept me from working, going to school, or being there for my husband and family. So, when my autonomic nervous system kicked it (and it really crapped out on me), I was (and still am) shocked that my willpower has not been enough to overcome.
Last October, the ER doctors thought I was having a heart attack because my chest pains were so intense, like electric jolts piercing my heart. I had experienced chest pains, palpitations, and a racing heart (tachycardia) regularly for years with the onset of POTS, however nothing as intense as the pain that began that morning. The ER had never heard of Postural Orthostatic Tachycardia Syndrome or Dysautonomia before (go figure). They didn’t know what my other conditions were either (of course) but I wasn’t as concerned about those at the time. We explained how once upright, my blood pressure drops and heart races, and my autonomic nervous system shuts down. “Oh, almost everyone has that,” the ER doctor said under his breath, chuckling. “Well doctor, everyone doesn’t almost pass out every time they try to sit or stand up,” I whispered through my head pain, angry that he would assume I am confined to lie flat in a bed for years shrouded with earplugs, a headset, and an eye mask- all over a little dizziness upon standing. (Sure, everyone has that). Keep in mind, this is tucked into a tiny dimmed closet-size room in the ER, as my hypersensitivity to light and sound exacerbates my ongoing migraine disorder too much to be around noise. I lucked out with a sweet nurse who knew what RSD was, and she was the only reason I was given special accommodations. They did multiple tests at the hospital, then through the week, I had several rounds of tests at my Cardiologist’s office. You know, the usual fun…
Verdict? They couldn’t find any reason for my heart to experience the additional pain. That was excellent news. POTS is a nervous system condition which effects the way the heart behaves; it isn’t a cardiac condition effecting the way the body behaves. No heart condition- score!
Conclusion: Since they couldn’t find any cause for the pain and onset of increased symptoms, the next 5 months thereafter were out of the doctor’s hands. (Thanks doc!) My fatigue and brain fog were unwavering. Just trying to move my fingers across the keyboard, holding my phone to text, or forming complete thoughts enough to compile a short blog post became so trying…so overwhelming…so frustrating… my short-lived recovery progress had taken a step in the wrong direction. For the first 2 years after the POTS began, I was in stasis mode. Pancake body, syrup brain. I was so ill and no one knew how to help me. After the spinal procedures in 2011 which threw my body into this tangle of illness, I was basically a lump of pain and un-moving frustrated flesh. Having finally made my first bit of progress last year, working so hard to use the restroom on my own and do some of my own personal hygiene from bed, falling backward again was not in my recovery plan! By last Christmas, I became depressed that my body was no longer moving forward and I was still stuck in the same bed going on 4 years after all of the doctors, hospitals, medications and hard work. (If you follow my blog, my posts reflected my disposition.)
Many with autonomic nervous system dysfunction (dysautonomia) carry on normally, dealing with bouts of dizziness or feeling lightheaded periodically. About a quarter of those with POTS are too disabled to work a job. And a small percentage have symptoms which are so severe, they are confined to a bed and may be hospitalized regularly. I fall into the last category, though I haven’t been hospitalized for a whole year- take that chronic illness! (Let’s not count the times I’ve ignored my doctor’s recommendations to go to the ER). A very large number of those with POTS are teen girls. Awareness and treatment options are lacking for the estimated 70 million individuals living with Dysautonomia worldwide. [Dysautonomia International] Conditions like EDS, Fibromyalgia, CRPS/RSD, heart attack, Chronic Fatigue Syndrome/ME/SEID, Chiari Malformation, stroke, Intracranial Hypertension, Traumatic Brain Injury, Spinal Cord Injury and Parkinson’s can cause Dysautonomia and POTS. To find out if you or a loved one have POTS, see a cardiologist for a “tilt table test” and cardiac monitoring.
Symptomatically, POTS is compared to Congestive Heart Failure, COPD, and massive blood loss. I’ve learned that everyone with Dysautonomia experiences it a little differently, but the most prominent symptoms for me have been low blood pressure, fatigue, confusion, trouble concentrating (brain fog), extreme hypersensitivity to sound and light, brain fog, head pain, trouble breathing, syncope/pre-syncope (fainting or almost fainting), vertigo, brain fog, muscle shaking, weakness, trouble digesting and absorbing food (gastroparesis), bladder dysfunction, chest pain, heart palpitations, brain fog, weak pulse laying down, heart racing when upright, orthostatic intolerance, brain fog, and temperature change intolerance…did I remember brain fog?
It took 2 years for me to get properly diagnosed with POTS and Dysautonomia because pain management doctors and primary care doctors don’t know what it is, what the symptoms are, or how to treat it. Just yesterday, my pain management doctor tried to argue that I developed it from “laying around too much” when the immediate onset was actually damage to my spinal cord. For individuals with POTS, the opposite is true. Pushing yourself to do more than your body allows can send your blood pressure plummeting for weeks or months putting you into an almost comatose state, can cause fevers, flu-like symptoms, severe fatigue, wide-spread physical pain, swelling or “blood pooling”, and a long list of intensified symptoms (see all Dysautonomia symptoms here). Last October, for instance, I believe my trip to the ER and subsequent 5 month puddle-of-me was the result of pushing myself to climb a flight of stairs.
Thankfully, this past spring, my body let up enough to allow me back on my journey toward recovery. (Que happy music.) I’m currently doing home physical therapy from bed with a knowledgeable cardiac rehab therapist, I have new goals for my life, and when I am faced with my body’s set-backs, I’ll try not to allow my frustrations to defeat me.
Chronic Pain of the Brain: #ChronicMigraine, If only I Could SCREAM!!
For nearly 11 years I have had a neurological chronic pain condition which is known as mysterious, under-researched, difficult to treat, incurable, lacking in treatment options, and also like Chronic Migraine, many say my chronic pain condition is also “rare” when in fact neither actually should be.
Before I had been diagnosed with Complex Regional Pain Syndrome in 2004 (known as one of the most painful chronic disorders) I had never even heard of it. Neither had my family, friends, and many doctors and nurses have never heard of CRPS (RSD) either. However, 4 years ago when my journey with Chronic Migraine began, I learned that something as common as a headache could be even more mysterious and surprisingly harder to treat. I have been surviving a host of head difficulties: spinal headaches (Cerebro-spinal fluid imbalance), Cluster Headaches, Trigeminal Neuralgia (facial nerve pain) and Chronic Migraine which equals CONSTANT intense, debilitating head pain for the past 4 years straight.
But everyone knows what a migraine is. I could even buy pills at CVS for migraines and headaches, right? So why are there fewer medical options for my head pain than for a widely unheard of, “mysterious” and complex chronic pain condition like CRPS? It is baffling! This is debilitating chronic pain of the brain and doctors seem to have fewer resources and fewer answers to questions as well. It’s “ONLY a migraine” seems to be the overwhelming attitude of society and physicians, and it is because of a lack of awareness. I was part of that unaware group before 4 years ago…before my life and brain changed.
While chronic pain crippled me and affected my life and body in every way, most days I found some ways to function using walking aids like crutches or a wheel chair. In contrast, this pain in my head shuts down my thoughts, my eyes, memory, speech, my ears, balance, and just moving my arm or inhaling too deeply sends an electric jolt through my brain. My entire being is stunted due to my head pain. I would never ever want to minimize the horrors that chronic pain sufferers endure, but I had many more treatment options as a chronic pain sufferer compared to a headache disorder sufferer. In 11 years, I still have not reached the end of all options as a CRPS patient, but within a few months I had tried everything available for this horrible head pain.
Did you know that the NIH claims that Chronic Migraine and Cluster Headaches are 2 of the MOST DISABLING CONDITIONS in the U.S.? Thirty seven million Americans suffer from migraines; 2-3 million are chronic.
When I was diagnosed with chronic pain, there were so many tests, scans, physical therapy, both medical and alternative resources to exhaust, invasive injections, surgical options, non-invasive therapies, and tons of different kinds of medications. Even though the benefits were minimal, and most things I tried didn’t help at all, there were options available. And options feel a lot like HOPE when you are barely hanging on from the kind of pain CRPS causes. I feel as though it has taken so little time to expend the resources accessible for Migraine Disease, and even all of the headache doctors don’t seem very informed about what to do next, or how to answer what seem like simple questions. As I communicate with others with chronic migraine and other headache disorders, I have found that others feel the same about how their headache doctors treat their serious symptoms.
This is chronic pain of the brain, the part which controls everything in the body! It is WHO I AM. I am basically shut down for operation for most of the past 4 years. Be your own advocate? Try advocating for yourself when you can hardly speak, move, or open your eyes. When the room is spinning every time you move your head, a bird chirping can send you into a “suicide headache,” you dread something as simple as flushing the toilet, swallowing your water, or even blinking your eyes the pain is so unbearable.
Your senses are held prisoner by chronic pain of the brain- the part of you that registers all of the pain signals in your body, and now has become nothing but pain itself. This is not good enough. There are too many of us, and we deserve so much better than a life whispering in the dark.
If you are surviving Chronic Migraine, chronic pain, or other painful debilitating neurological conditions, you are not alone. February 29th is Rare Disease Day. Please share to help spread awareness. Thank you for visiting and for commenting.
In the U.S., more than 37 mill. people suffer from migraines. Studies suggest 13% of U.S. adults have migraines, and 2-3 mill. migraine sufferers are chronic.
Almost 5 million in the U.S. get at least one migraine attack per month, while more than 11 mill. people are moderately to severely disabled due to migraines.
Migraines cost the U.S. more than 31 Billion per year in healthcare
Only $19 million goes into researching migraine disorders
~Find me at @aBodyofHope on Twitter
www.Facebook.com/Living.with.RSD for a positive chronic pain support group welcoming all types of chronic pain conditions
Living in the dark or with a blindfold on, you get used to your surroundings in time. You get used to the way things feel. Your water bottle is always in its place, and you know where to reach your hand to find it. You know each medication by the sound and weight of the pills inside. You get accustomed to the absence of your reflection, because mirrors don’t have a purpose in the dark.
Your fingertips know the feeling of every surface. Your body learns which pieces of furniture are weight-bearing and which give in if you fall into them.
In due time, everything has a place in your dark room. You start to trust yourself in the blackness. The dark is so comfortable, you start to forget what things look like in the full light of day.
This is how living with Depression is. After a while, you almost acclimate to it. Unbearable darkness moves into a cloudy dim that you tell yourself is normal. You start to forget who you once were and how to get back to that person again. You say and do all the things you believe you should do- but the reason you are doing them isn’t clear to you any more. You know this world so intimately that you almost forget there is another way to feel.
Hypersensitive to artificial light- to those who talk about JUST “being positive” or “how to be happy” cause you to cover your eyes in pain. These are the things that remind you how intense it has become.
Someone who loves you opens a window a crack. Just enough to let real sunshine and fresh air in. You catch a glimpse of yourself in the mirror for the first time in…too long. You didn’t even realize the dark had become such a companion to you. Now you see the room with a bit of light cast over it. Your comfortable, perfectly laid out room with all of your things at your knowing fingertips: you finally see…a cluttered dusty mess with dangerous obstacles everywhere.
Going back to the dark isn’t comfortable any more. All you want to do now is paw along the wall searching for that window.
Disability Won’t Take my Passions Away
If you have a passion for something that you can no longer do because of physical impairment, do you truly stop loving it? Then why do we say: “I used to love to…”?
This is one of the most heart-wrenching parts in coming to terms with disability. When you go to say or write the thing you’ve always loved to do, and you realize it is suddenly in past tense. It doesn’t stop twinging your heart each and every time you have to say that you USED to love hiking or taking long road trips. But you come to terms with saying it in past tense. I did. Reluctantly, my old life of passions and dreams were exchanged for my new life of “used to love” and “always enjoyed”. One by one, I locked away those pieces of myself I no longer had physical access to.
Then, a few years ago, my health became much worse. I went from moderately mobile with chronic pain to bed bound with a variety of chronic illnesses and chronic pain conditions. Now, I’ve found myself cutting out all of the rest of life’s pleasures from the list of things I love. How can I say, “I used to love music” or “I used to enjoy singing” or “cooking used to be one of my passions” when these are all lies!
The truth is, I am still passionate about all of these things! Just because I cannot participate in them actively, does not mean the joy has not remained. In fact, when my brain condition and ongoing migraine becomes insufferable, even with no sound tolerable, getting lost into a silent song within myself has at times been my only reprieve from the unrelenting pain. My instruments now live in cases in shelves above my bed, or tucked away in closets. My voice has not echoed against the wall in song for years, but every day an instrument plays… A song cries out loudly inside of me. A different arrangement every single day, melodies no one hears but myself- and this music will not stop just because my ears cannot tolerate sound! No pain, no disability, no illness or mental destruction can take that music away from me.
Just because parts of my flesh weaken, and I am forced to make adjustments and accommodations to that- doesn’t mean that my passions and loves should crumble along with my flesh. There is nothing wrong with how much I desire. I refuse to shut parts of myself off just because I might FEEL more to live with passion.
Even though I can no longer cook, do I not still love it? I don’t need to be standing upright at a stove or walking the isles of a grocery store to envision a new recipe. I can visualize the food in front of me. I can imagine the flavors of a recipe in my mind’s eye. Is this not the passion for cooking still alive inside of me? Even when my POTS makes eating the last thing I want to do, I can still escape my pain through the simple joy of imagining myself cooking. Why would I ever say “I used to enjoy cooking” when that zeal continues to live strong inside of me?
Though pieces of my body may break, though my mind might continue to slow, though things I am able to do may drift away from my grasp, I choose not to allow that which I love break away. I choose to hold my passions that much closer to me.
And for those I let go so long ago, I would like to reclaim them. I ask that in comments, you consider reclaiming some of your own that you know you will always love forever.
-I have always loved to travel.
-Hiking is a love of mine.
-Dancing will always be one of my passions.
Thank you to artist Fensterer for allowing your artwork, “Lost Between the Sounds” to be featured. This was the only image I could imagine for this article, as his powerful work helped inspire it. Check out his other powerful images at DeviantArt.
She’ll Always be Baby to Him
She’ll Always be Baby to Him
He walks through the door to a woman on the floor. She’s sick now, and he never knows who he’ll be coming home to. The house was built with children in mind. They left a life of adventure behind to save and to plan ahead for a wonderful family instead.
She was still a girl when the illness took hold. But neither of them let go of their goals. And they kept looking on to a brighter tomorrow when all of thier visions would come into view.
More health concerns, the bills piled high, the doctors said she’ll get worse through the rest of her life. And the dreams that once made them laugh were fading into thier past.
Oh, but the one hope that they couldn’t ignore was to start a family so they prayed to the Lord. But her body took a terrible turn- the house went dark- their last dream (like her pain)- it was burned.
They believed that their love would always survive, but the emptiness was an angry kind that filled the corners of their home with doubt. Without the promise of a little one, dreaming just didn’t seem much fun for the couple who had survived everything–until this.
Now a grown woman is like his child and she wonders if taking care of her will drive him wild, but she keeps on praying love will see them through. The loss they mourn is another Chronic Pain that they must both endure, but Hope and Love they cling to just like glue.
-A Body of Hope
This striking image is courtesy of artist Brett Williams. “Isole” is one of Brett’s chalk works. Please visit one of his pages to purchase an original piece for your home or a gift.
Holiday Heroes, a love letter
Those with chronic illness, chronic pain, and disabilities are all heroes to me. I know yesterday was hard. The holidays are always a challenge no matter where on the spectrum of disabled you are, celebrations push us to our limits.
We mentally feel pushed to be up and feel grateful or in the spirit of the season. When pain and illness bombards our thoughts constantly, at times it can feel like a mountain to climb to find a hint of the same holiday spirit we once felt. Physically, we are pushed to do the things we really want to do like spend the time with the people we most want to see, bake, shop, go to sporting events, etc. Some in the “Spoonie” community cannot leave home any longer or their illness is such that they are now confined to a bed, yet they still find ways to express gratitude and the spirit of the season (heroes).
Many push to try to do things we’ve always done despite our declining health like cook, or play a sport or game with everyone else. Even though I’m confined to a bed in a back room while the family is having dinner and festivities, this year I pushed myself to change into something cute. Honestly, changing clothes took away from my energy and added to my pain; I know I could have used those spoons to spend more time with a loved one later on. When I was still able to cook, I overdid it in the kitchen and my pain would spike. The truth is, some of our actions aren’t for other people, some things we do are just for us- and it’s healthy! I have spent the last few holidays either in days old pajamas or in the hospital, so changing clothes helped remind ME of who I used to be. And I’m so grateful I had some extra spoons to do something so frivolous this year and still have some quiet moments with a few loved ones as well.
I know spending time around your family takes so much courage for fear of getting bumped and pain skyrocketing, eating a bite of something that triggers your body to become inflamed, or an unexpected noise setting off a migraine or cluster headache- these are some of the sacrifices you make for LOVE. You are brave and you are warriors. If you always listened to the will of your body, you may never open your eyes each day. Your body tells you NO!!! But your heart calls. Your heart is always stronger. And I admire each and every one of you. You teach me courage. During the holiday season, we make many sacrifices: trading spoons for love of others and longing for who we still are inside. Balancing emotional needs and physical needs. Always juggling.
That is why those with chronic illness and the disabled are my heroes.
“Courage doesn’t always roar. Sometimes courage is the little voice at the end of the day that says I’ll try again tomorrow.” ― Mary Anne Radmacher
Articles to Reinvigorate your Spirit:
“Quiet Strength” by Choosing Hope
“The Deepness” by A Beautiful Life with Cancer
“Through it All” Poem by Mum C.
“Is Jesus Enough to get you through the Lonely Moments?” by Rest Ministries
“Square Plates are an Abomination on the Face of a Dying Earth” by Snotting Black