What People Need to Understand About Chronic Pain This Pain Awareness Month

september_is_chronic_pain_awareness_month_by_neice1176-d988880September is Pain Awareness Month, and the running joke in the health community is that some of us are extremely aware of pain. For many people with medical conditions, chronic pain is a constant, day-to-day companion. It never seems to go unfelt or unnoticed, except to passers-by who often see laughter, smiles and energy, not debilitating, agonizing pain. The reality of living with and making peace with chronic pain is vastly different from the picture of health the rest of the world may see.

One of the “job hazards” of living with chronic health conditions that cause pain is never knowing what body you’ll wake up in. You could be fine one day and wake up with shooting, burning pain the next. You could feel agile all morning but have a pain flare-up in the afternoon. You could be energetic one day and completely fatigued the next as you fight against your sore body.

It’s strange to feel like you may not fully know your own body amid its unpredictability, but if you struggle with pain, you learn to treat yourself with care and listen to your needs. You discover what your body craves when it’s hurting. You follow through with managing your pain – no matter how much you’d rather be doing anything else – because you don’t want your physical state to disrupt the rest of your day. You learn to be more gentle with yourself, practice self-care and occasionally say “no” when your body’s aching and anything more than staying in bed proves to be too much to handle.

Living with pain is a delicate balance between living with a health condition and purely, simply living. It may be going out some nights and staying in others, alternating between springing out of bed and lying down all day, wincing and working hard, sleeping and staying up. It may be smiling, laughing and enjoying life’s simple pleasures, even when life seems less than enjoyable. It’s inconspicuous, silent normalcy concealed within challenging circumstances.

Helping those of us who live with chronic pain may seem daunting, but it is far simpler than it appears. See us. Listen to us. Help us when we ask. Respect and understand our needs. Our pain may seem complicated, but at heart, we’re all people, pushing past pain and living life, one day at a time!

This article was borrowed from Kelly Douglas on The Mighty Website (https://themighty.com/2018/09/chronic-pain-awareness-month-what-to-know/

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Pain!…..Chronic pain!

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I don’t know what you imagine when you hear of chronic pain. Per WebMd, it is “pain lasting more than 12 weeks”. To me, it is a pain so sharp it leaves you writhing, a pain so severe all you want to do is curl up in a ball and cry, a pain so agonizing there is nothing you wouldn’t give to have it ease, just a little bit, the kind of pain that numbs you, every second, every minute and every hour of the day. I go to the hospital and I am asked about my pain level on a scale of 1 to 10 and I just never answer that question. Pain is one of those things that I find so difficult to explain because what do you say really? Especially when it is confined to an arbitrary scale of 1 to 10 because really? Surely?! Honestly?! Only people who suffer from chronic pain can understand why that scale is in itself ridiculously baffling! How do you quantify pain that makes you want to pull your hair out? That makes you unable to find remedy whether in the form of pills, injections or sleep? Pain that you just have to let be. Learn to live with, even as it varies with seasons but is just ALWAYS there.
I have so many sources of pain it’s hard to identify which one causes what. There’s lupus which for me means joint pain, rheumatoid arthritis for my joints with all the creaking and stiffness, fibromyalgia is now the epitome of pain with the muscles and the joints (again!)- it is a widespread pain and tenderness that at times has me cringing at the slightest touch. Then we have the relatively “smaller” side effects of the disease that cause pain. We’re talking Sciatica that is a sharp pain running from the base of the spine down the buttock to mid-calf (this one is IT!! Goodness gracious me!), Neuropathy which is basically feeling like electric currents running through my muscles and bones, skin that feels wet when it’s dry, pins and needles all over, Pericarditis that is the inflammation of the sac surrounding the heart causing chest pain.
I’ve been at it for 13 years! 13! That’s a bloody long time to live with pain but what’s the alternative? Pain takes you to some dark, dark places! Pain brings with it anxiety and depression hence completing the trifecta of misery. And there is no one more dangerous than the one fighting the three. The guilt, hopelessness, loneliness, sadness, despair, impact on lifestyle, abilities, capabilities and daily life, insomnia/ ‘painsomnia’ and dreading going to sleep because you just know how much it’s going to hurt and that when you get up, it will still hurt some more; the adjustments made to accommodate this lifestyle, the prolonged and never-ending fatigue on a mental, physical and emotional level……darn it!
The pain we go through as chronically ill persons is not one to be ignored or undermined. Kindly sympathize and empathize with us, understand that our bodies are hell! Living, breathing hell! That for me to say I’m in pain, to voice it when I’m in pain all the darn time, it is excruciating! Yet I smile, I push forward, I have to! I’ve had so many of my loved ones tell me, “If only I could bear half your pain for you, just to make it ever so bearable” because when you live with a person in chronic pain, you bear the emotional pain. And in my view, that is heavier and harder to live with. Trust me, I know.
“And the fury in all of this is that I’m ‘effin’ strong and I can still be me…But it doesn’t mean I’m not in pain.”– Lady Gaga, Fibromyalgia warrior.

Born to suffer…….

ca1507570189c15cbaf9a8de5c8903fcFirst, I would like to thank you all for the amazing feedback I got on the piece about depression (https://mctdwarrior.wordpress.com/2017/03/30/mental-health-and-lupus/) This piece further affirmed to me that we all silently suffer with mental health challenges. Being one of those who find it really hard to open up to people, if you cannot seek professional help, please find that one person to whom you can open up and share your struggles. That really helps.

I was talking to my dad the other day about the psyche of a sick person. How no matter how hard he tries to understand it, he never can. Sick persons, especially chronically ill ones, think on a whole different level, psychologically and emotionally: We tend to close off our feelings, we tend to ride the wave, and we tend to let whatever will be, be. I remember when I was first diagnosed, I really did not grasp the magnitude of what was going on. What I was, was relieved! Finally! They found what is wrong with me; Finally! The teachers can stop whispering behind my back; Finally! I can get me some darn treatment! And so that is what it was for me; no more trial and error, no more trial drugs, no more tens of different specialists trying to deduce what was wrong. They found it! It has a name! It is Lupus and there is a course of action for it! Little did I know that this diagnosis was a double edged sword. It led to more and more tests and subsequently diagnoses. Every hospital visit from thereon out meant a new diagnosis, meant a change in drugs, meant an increase in dosage, and meant alternative therapies being thrown at me. And at first, you are so bamboozled by all the fancy names that it doesn’t register. And it isn’t like now where when a new word is thrown out there, first thing is google. Back then, I relied on my doctors for everything. And I think since I was relatively young, they tried to shield me from the truth just always saying that everything will be okay. When I was 19, I decided that 7 years had been enough time of listening to other people. I took charge of my condition and now I was calling the shots. I would ask about side effects, I would ask about the necessity of some medication, I would refuse some courses of treatment and I said when I had had enough. And I believe, any chronically person gets to that point eventually.
So I was telling my dad that my mindset is not what it used to be at 13, at 19, now, I am well beyond my years. Because of my conditions, I have been forced to think about things people my age haven’t yet fathomed, I have taken steps and put in place measures that most people would consider drastic and not understand. But that is the psyche of a chronically ill person. I am no longer afraid of hospitals, of diagnoses, of death….. I have made my peace with what I have, the risks accompanying it and I understand my decisions. Some are made out of pure pain and misery but most are well thought out, well-crafted and well understood.
So today I am writing mainly to the caregivers. I know sometimes, if not most of the time, you do not understand some of the decisions we make. Why we refuse treatment, why we no longer trust conventional medicine, why we no longer trust our doctors, why we are looking at alternative therapies and why sometimes we just want to be left alone- No doctors, no drugs, no visitors, nothing. A life that is scheduled and rotates around medication and doctors’ appointments is one that sucks! Trust me, 12 years later and my position still stands, it is necessary but it sucks! I live by the mantra ‘A day at a time’ but when you take it quite literally, it’s heartbreaking! A life where you cannot plan for a holiday, a life where you cannot imagine a happy future with a husband and kids in tow, where all you can envision is appointments and drugs, heartbreaking. Just planning and dreaming of anything goes against every instinct this condition has tied me down to. This is by no means a pity party, I am just trying to explain what it is like to be in my head. So I hope that in some way, this can change how people view us, how people understand us. If maybe you can try standing in our shoes, living in our heads, maybe, just maybe, you can try imagining what it is like to be us. But even if you cannot, I hope you can respect our decisions and know that most of the time, we are fully aware of the decisions we are making. They may suck, I know, but remember, you can never fully understand so all you have left to do it empathize.
Empathy is about standing in someone else’s shoes, feeling with his or her heart, seeing with his or her eyes. Not only is empathy hard to outsource and automate, but it makes the world a better place”. – Daniel H. Pink

Mental health and Lupus…..

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It has been a long long time since I last wrote. Several reasons for that actually; one, writer’s block- at some point I just could not write a thing but it’s lifting now so hopefully, better, clearer days ahead. Two, procrastination- I know you all know and understand this one; postponing till you can postpone no more. And lastly, a bout of depression- mental health when it comes to Lupus plays a vital part in our wellbeing. So pain; physical and emotional, stress, uncertainty and all other worldly pressure all came to a head so I had to take some time for myself. I must admit, I have been depressed before so I know depression quite well, but this one was on a whole new level. But I am happy to report that I am much better, letting go and letting God and all that. Mental health is a subject that has been avoided and shunned for the longest time. I have had depression come and go during the course of my life (post-diagnosis) that is. And I have had people refuse to believe that I could have mental health problems apparently because I laugh and smile a lot. Most of the time, that is very genuine and other times, it is a façade, and it does help me some because then, unless you know me very well, it is hard to tell. But I thank God for caregivers who care and who know the signs and symptoms. Personally when depression hits, I stop doing things that I love; I stop writing, I stop reading, eating only on occasion, spend most of my days in bed till such a time when it gradually lifts. And I let it be, because that is my process and I understand it. Everybody’s case is different in terms of manifestations and solutions so I won’t purport to know how to fix cases of depression. What I know is that depression is not a choice one makes, it is a chemical imbalance that can be resolved using medications, or not. My doctor prescribed antidepressants for me a few years ago and suffice to say, taking them on a daily basis would “cramp my style” so I had to know how to monitor myself and I made the decision to only take them only when shit truly hit the fan! (Forgive my François) It is especially sad that no combination of drugs or therapy can fix it. It is one of those things for me, which just take however long they will. What works for me, may not work for someone else. Nothing anyone can say or do can fix it. Depression is an ever-evolving disease that eats away at your brain, your strength, emotions. Once you think you’ve got things under control, it’ll contort and poke at a tender spot you didn’t even know existed. My tipping points are usually emotional pain and distress. I think I am so used to the physical pain that it doesn’t really scare me that much, but emotions, those are scary. Other times, the world just gets to me, you know? The pressures of life and ‘adulting’. The fact that securing a job with a chronic condition is almost impossible here in Kenya. I just thank God that my family is understanding and does not pressure me any more than I already do myself. Otherwise, this would be a whole different story. And especially, being young and sick, we need people around us who understand us; parents, siblings, friends, relatives. Depression makes me a tad selfish and it is one of the things I hate most about it. It takes me to a mental space where I am in my own head that I cannot look around and think about others but lucky for me, I have a great support system that stands right there with me, for however long I may need.

I have also been on the other end of a depressive episode, where someone I love was depressed and there was nothing I could do about it. So I know that when I am in one of my episodes, it is especially hard for them. Just know that there’s nothing anyone can say that a depressed person will believe or that will pull them back to surface where reason lies. This reality is very tough.
So as I take the time for my brain to heal, slowly but surely, I thank you for understanding and for supporting my journey. Till next time, Godspeed!

 

I Won’t Apologize for Having Fun While Chronically Ill!

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Yet, with adults, the same concept doesn’t seem to hold true. Whenever ill people do — well, anything — it’s taken as “proof” that we’re bluffing about our condition. Many of us are confronted by complete strangers on a regular basis when we go out in public, on everything from using parking placards to requesting ADA accommodation at events. We’re challenged more by people we know, who should really know better.

After I became ill, I decided to go to my favorite theme park one day. I didn’t do much; it was a very sedentary experience. I posted a photo of myself on one of the rides on Facebook with my germ mask on backward, slept for days to recover from my adventure, and didn’t think much of it. A few days later, my Mom called me about it. A “family friend” had seen the photo and was furious about it. She’d apparently complained to several people that if I was at a theme park, I was obviously well enough to be working and was pulling some sort of scam. It had gotten back to my mother.

I promptly unfriended and blocked the person, but their actions stayed with me. For most of the next year or so, whenever I posted a photo of myself doing anything fun, I looked over my shoulder. I always made a point of describing how sick I was and how I’d needed to rest, and how tired I was afterward. I felt the need to qualify what I was doing; to verify that I was still ill, and to remind everyone that there was more to the truth than what was visible in the photo. Someone’s ignorance and unkind judgments had made me feel guilty about enjoying my life to the best of my ability and upset my mom, and that was unconscionable.

It often seems that there’s no real way for chronically ill people to win this battle. Hostile individuals who don’t want to believe that you’re really ill will find fault with anything you do. There’s no way to appease them, regardless of how you live your life.

Some chronically ill people are able to exercise, some are not. Some of us are encouraged to be physically active in some way to help us maintain function (I have a series of physical therapy exercises to do every day to help with some specific orthopedic issues, for instance). Yet, if you’re seen being physically active in any way, it’s taken as a sign that you’re not sick after all. Society likes to applaud those Olympic athletes who fight through their illness or disability to compete. If you fight through your illness or disability to do something physical sometimes, such as a 5K or dance performance, it may be seen as proof that you’re a fraud.

It’s widely accepted that having a strong, supportive network of friends and family is helpful to those who have chronic illness. We’re told that for our own well-being, we should get out of the house once in a while. However, if we dare to go out in public with friends or do something fun occasionally, again, some will believe we’re not sick. And if we spend one afternoon at the movies now and again, it somehow equates to being able to spend 40 hours a week, 50 weeks a year, at work.

If you live alone or don’t have a lot of support, you still have to take care of daily tasks, but something as simple as buying your own groceries might actually be seen as proof you’re able-bodied.

If you are too exhausted or hurting too much to shower, do your hair or dress up you’ve let yourself go; if you go out with makeup and styled hair, well, you’re obviously not sick because you don’t look sick.

If you post photos on social media where you’re looking well people will think you’re not ill; if you post photos of yourself undergoing treatment, you’ll be accused of being an attention seeker.

If you tell someone about the progressive course of your illness, you’re faking it because your Aunt Edna’s son’s niece had the same condition and she’s fine now.

Social media photos and observations of chronically ill people smiling and looking “normal” or doing errands have even been used to deny or remove disability benefits, which is quite possibly the most troubling thing of all. It’s hard to understand that disability determination specialists, doctors and government benefits administrators — people who supposedly are knowledgeable about a wide range of health conditions — don’t accept the concepts of good days, payback and invisible illnesses that do not always have linear trajectories.

Nobody ever seems to consider what’s happening outside and around that Facebook photo they’re snarking about. The fact that it might have been the first time in weeks that chronically ill patient got to do something really fun eludes them. They don’t realize how much those activities cost in terms of pain, fatigue and reduced function. They look at one photo or one Facebook status about one day and think they’re an expert on your life.

I’m not sure what these people think we’re supposed to do every day. We have incurable chronic illnesses. We often spend most of our time either at home or in treatment as it is. We’re often exhausted and in a lot of pain. If we’re not able to work full time, are we supposed to forgo any and all moments of joy, distraction, social interaction or enjoyment? Will that help us in any way? Being sick is extremely hard for many of us. It’s even harder when hurtful, judgmental types decide that illness should invalidate the fact that we have the same needs as anyone else. Instead of telling chronically ill individuals to shake off comments and accusations, maybe the onus should be on these hecklers to refrain from making them and mind their business. Is it really that hard to leave other people alone?

Eleanor Roosevelt once said: “Do what you feel in your heart to be right — for you’ll be criticized anyway.” I’ve taken those words to heart when it comes to interacting with others about my chronic illness. I am no longer particularly nice when I’m confronted by impromptu judges. Every once in a while someone honestly doesn’t understand, and politely and succinctly explaining a few things helps them. More often, though, they’ve already come to their own conclusions and nothing I say is going to put a dent in their hostility. I won’t waste my time trying to justify myself to random strangers and mean-spirited acquaintances who have appointed themselves judge and jury of my life.

I can’t stop others from thinking whatever they want about me. However, I can and do refuse to comply when someone demands apologies, guilt or justifications from me for getting out of the house once in a while. Anyone who decides that chronic illness somehow invalidates my needs as a person — including my needs for happiness and socialization — isn’t getting an iota of my concern.”

By Denise Reich

Living with APS…..

APS, a day at a time

“You are having a stroke.” Those were my neurologist’s words as he looked back and forth at the MRI then at me and at the MRI again. He said that he could not believe I was standing in front of him instead of having a full-on stroke at that moment. He was looking at huge clots lodged dead-center in my brain, inoperable due to the location and size. A surgical alternative carried numerous risks including interference with my speech, movement and emotions. There was no time to explain anything and I was admitted immediately. Imagine, if you can, being 18 years old, at the beginning of life, as it should be, then hearing such devastating words. I wanted to cry, to scream but I could do neither. I froze in time and place. Sitting there on my hospital bed and googling a stroke and all its catastrophic effects. I had already changed my choice at the university because of lupus and now it seemed I was going to change it again. But I knew not what lay in store. I was started immediately on blood thinners, clexane to be exact and it would be injected into the fat under my stomach. That was the one time the belly fat had actually worked in my favor. The following day, I was shown how to do it on my own and would continue to for the next 7 days, then I would switch to an oral anticoagulant known as warfarin. My second night in the hospital, I had an actual stroke. And I remember afterwards I could not bring myself to tell my friends and family that I’d had a stroke. Instead, I’d say that I have blood clots in the brain; Cerebral venous Sinus Thrombosis. Somehow that seemed better and eased my mind as I tried putting them at ease. Fast forward and 6 days later, I was released from the hospital with a whole new set of drugs and instructions. Life changed, yet again. A curveball had been thrown and it was up to me to know how to fit it into my life.

Lupus and APS

After everything had settled down and I was getting back into a somewhat normal life rhythm, my doctor ordered some new tests. It was then that he discovered that I had Antiphospholipid Antibody Syndrome, secondary to Lupus. APS is an autoimmune condition where the immune system mistakenly attacks some normal proteins in the blood. It causes clots to form within the arteries or veins. It causes strokes (caused by a clot in the brain), heart attacks, pulmonary embolisms (a clot in the lungs), deep vein thrombosis (a clot in the leg veins), and miscarriages among other disastrous effects. As with other autoimmune conditions, APS has no cure but is managed through medication. Following my stroke, I was to be on warfarin for 9-12 months after which everything would be alright. But, it’s been 5 years. Further tests revealed that because of my Lupus, I had a form of APS that wasn’t subject to the ordinary timeline. And further, that I’ll be on blood thinners for the rest of my life. Truth be told, since I was a child, I have never been a fan of vegetables; Sukuma, cabbages, kunde but ever since I had to eliminate them from my diet, by force, things took a whole new turn. The high quantity of vitamin K contained in these veggies interferes with the working of the anti-coagulant warfarin. So I had to eliminate vegetables, cereals and anything else considered to interfere with the working of warfarin. I am now restricted to a diet of meat and carbohydrates only. Not only that, I have to have a test known as the International Normalized Ratio (INR) that is used to check the level of bleeding or clotting. Ideally, it is meant to be a number between 2.0 and 3.0; Below 2 means I’m clotting excessively and above 3, means I’m bleeding excessively. This figure helps me adjust the dosage of warfarin I’m on and the test can be done daily, weekly, bi-weekly or monthly depending on the levels.
Living with APS is terrifying. I cannot explain the crippling fear that overcomes me anytime I have a splitting headache that just won’t go away or pain in my calves and the visible clots all over or pain on the left side of my chest. The possibilities of all that could go wrong are just too heavy to even bear. But I’m often reminded, that this is my battle and I have to fight. No retreat, no surrender. We all go through those rough days when I just let my mind wander and let in all the possibilities of what could be. And when you’ve lived the life that I do, those thoughts often lead to scary places. But, this is what is. We bear that which we can with courage, faith and hope, and leave that we cannot, to a higher power.
#APSAWARENESSMONTH #GOBURGUNDYFORAPS!

For more information on Antiphospholipid Syndrome, go to: https://en.wikipedia.org/wiki/Antiphospholipid_syndrome

 

 

 

Dear Warriors….

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May is Lupus Awareness Month! All indications are that this is prime time to get on the “Spreading awareness” bandwagon. But I’ve been doing that ever since I started writing this blog, sharing my personal experiences in a bid to make people understand and become more empathetic to our plight. Be that as it may, there are those who still have no idea what Lupus is. Or their understanding is not what it should be. For that, I suggest you read all about Lupus at  What is lupus?

This, to me, is a month to CELEBRATE Lupus patients. These people who are warriors, survivors, conquerors. I’m not blowing my own trumpet here, I just know exactly what it is, what it means, physically, emotionally, psychologically and socially, to live with this deadly disease. As we well know, Lupus is like a fingerprint, unique to every individual who suffers from it. And by any standards, we can say that there are those who suffer more than others (If at all we can equate a person’s suffering to something in particular) No matter! Because at the end of the day, whether it’s systemic or discoid or drug-induced, LUPUS IS LUPUS! And whether it has attacked all your organs or some of your organs, the pain and the suffering knows no bounds. Speaking about Lupus now is no longer shameful, it may still be hard to explain and grasp, but we are setting the shame aside. Patients are now stronger and enlightened as to their plight, what it means for them, their families, their friends, and are ready and willing to talk about it. This in itself makes my heart swell…. I mean, to stand proudly and strongly and declare “I am a Lupus warrior”….that’s an accomplishment in itself.  That’s a major, major stride if you ask me.

FB_20160405_16_06_01_Saved_PictureSo today, and every single day this month, I would like to say, to these bold, strong, courageous, beautiful women (and men), You are doing it! You are beating odds, conquering fears, demonstrating strength and unbelievable courage, by just living; a single day and step at a time. The rough days, tougher nights, horrid weather, untold pain, social stigma! I for one, am especially proud of each and every single one of you! Though Lupus has forced us to grow up, to be wise, to be tough, it has also taught us to be sympathetic, empathetic and more compassionate. We are able to appreciate all that we do, while we can still do it. To savor every second of every day, even when those days are hard.

Hard as it may be to live with Lupus, and all the overlapping conditions thereto, I must say, I am honored to be alive, to be living, surviving and conquering all odds. My life has changed, dreams rebuilt, but I have lived and I have learned through it all. Being chronically ill has taught me balance, shown me the tangent uncertainty of life, taught me what to depend on and what is fleeting. It has taught me about faith, about hope. To believe in a higher power to guide me through, to know that life is worth living despite all its uncertainties. I wake up each day knowing that my life is valuable and that my enthusiasm for life is ever so present.

I mourn for all that I have lost and I still grieve for my youth. But now, I know, I have also gained much. It sure doesn’t seem like it, but this whole new dimension has shown and taught me new ways of living and understanding. To be young is a gift, riddled with excitement, adventure, the miracle of life’s possibilities. It makes you feel indestructible, even though everyone tells you that you shouldn’t, and I am here to tell you that you should for as long as you can.

LUPUS is a journey I never planned or asked for, BUT, I choose to love life, hate the disease and FIGHT!

Fight on warriors, I celebrate you all this month! Godspeed, Always!