When It's Tempting to Blame Myself for the Effects of My Illness

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Its been a humbling experience for me – this life of chronic illness and pain. Each day we labor over choices we once took for granted. No matter how complex or simple the task, we scrutinize pros and cons, weighing the benefits versus the costs. It’s a balancing act between managing our health and maintaining our connection with the world. It’s necessary. And exhausting.

But even our best efforts can’t guarantee the results we hope for. Years ago, I went through an intense few months where the consequences of choices consecutively ranged from disappointing to disastrous. The worse part? My descent into a spiral of reactions that started with self-blame, trapped me in a continuous loop of fuming and ruminating and left me spinning stories that had nothing to do with the actual incident. I knew this pattern was neither helpful nor healthy. But none of my go to practices – meditation, writing, qigong – could quiet the persistent hum of self-judgment.

I reached my breaking point. It was triggered by a well-intentioned birthday gift card for a pedicure. It sounds trivial, but after 10 years of being generally housebound, the thought of a pedicure – the scents and scraping and massaging – set loose a cascade of concerns. Even as my body screamed, “don’t,” I politely accepted the gift rather than hurt my friend’s feelings.

In the card she’d written, “Self-care is important!” While I agreed with the sentiment, the actual experience left me feeling more bruised than cared for. Something the pedicurist had said stuck in my mind. I plunged into the familiar river of emotional reactions. This time, though, I felt like I was drowning.

Desperate to find solid ground, I leafed through inspirational books looking for insight. That’s when I stumbled upon the Buddhist parable, “The Second Arrow.” In a moment of synchronicity between a pedicure and a parable, a metaphor became my lifeline.

To summarize the story’s message: We can’t control what life inevitably flings at us – chronic illness, disappointments, loss. That’s the first arrow. It hurts. We get trapped in our reactions. That’s the second arrow. It’s more painful than the first wound. But it’s within our control! We can choose not to shoot that second arrow.

The concept was like a beam of light breaking through a fog. As I understand it, this practice isn’t about denying or diminishing our pain. It’s about not adding to the pain. It’s about replacing self-inflicted suffering with self-compassion. So, I applied this perspective to that day’s experience.

After three cancelled appointments, I finally sat in a treatment room with the pedicurist, Sarah. The air smelled of patchouli. It made my eyes sting. The breeze coming through the open window provided no relief, so I blinked away the pain. Sarah scraped dead skin from my feet.

She asked, “How long have you been sick?”

“Ten years.”

“Oh! That’s far too long!”

I nodded.

“I’m sure I can help you get better. I’m a certified holistic nutritionist.”

I didn’t usually talk to strangers about my health, but I’d mentioned it the third time I’d had to cancel. So I rhymed off examples of potions, protocols, and modalities that I’d tried.

“But you’re still sick, so…” She paused. Sighed at my silence. Then continued, “Don’t you want to get better?”

The first arrow flew through the air. Her words landed like a punch in my stomach.

Sarah talked. My mind raced, “Don’t I want to get better?! But you have the magic cure? I shouldn’t tell people I’m ill. It’s my own fault. I wanted to do something normal. Idiot!”

I’d shot the second arrow.

I finally said, “I’m working with several practitioners, but I’ll keep your services in mind.”

The conversation ended. My pain continued.

As I reflected on the experience after having read the parable, my chattering mind grew quiet. And in that quiet, the fog that had enveloped me lifted. I saw that my reactions were causing far more suffering than the words of this stranger. Her words had stirred up challenges that came with being chronically ill.

Over time, the second arrow metaphor has helped me become more skillful in making healthy choices and in responding to whatever happens with an appropriate measure of grace and grit. With regular practice I’ve developed a greater capacity to notice when I’m reacting with self-blame and choose instead to respond with greater self-compassion. I’m more resilient when hurt by life’s arrows. And when I shoot the arrow?

I’ve learned to be a better friend to myself.

This is how I put the concept into practice:

1. Notice I’ve been hit by the first arrow. Acknowledge the pain – physical, mental, emotional. I might simply say, “That hurts,” and place my hand near my heart.

2. Pause. Taking a few deep breaths helps me stay in the present which also slows down the river of reactions.

3. Ask: “Do I really want to shoot the second arrow?”

I hope by sharing my story and this practice, others will be spared the struggles of the second arrow.

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Thinkstock Image By: AAGGraphics

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The Importance of Kindness and Support When You're Chronically Ill

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As a person dealing with a chronic illness, the most difficult part is to deal with the insensitivity of others who judge you and mistreat you for having limitations that one has no control over. It’s especially traumatizing when these people are your family members, whom you look up to for support and understanding.

I personally have been broken several times by this kind of treatment, and every time it happens it instills unimaginable fear and apprehension of trusting people again. Once you are vulnerable and share the struggles of dealing with the symptoms that you have to face each day, it puts you in an unsure zone where you are not certain whether you would get the support that you are looking for.

When you get the right kind of support it definitely gives you comfort and peace that there’s at least one person who really “gets it.” Or, even if he or she doesn’t get it, it still gives you some hope – a hope of having the acceptance of someone who knows the limitations that you have now but still chooses to love and respect you.

But if you get indifference, selfishness and hurtful comments in return of you baring your heart and soul, then it just shatters you in thousand pieces. People don’t realize how one kind gesture from them reaching out to us can be so uplifting and can help us to come out of the isolation that we feel on a daily basis.

Sadly, not everyone in this world is capable of being kind and sensitive towards other’s pain and struggles, for whatever reason they continually cause hurt to you emotionally. No reason can be justified for this kind of a behavior.

How can we uplift ourselves without depending on others?

These situations can turn into a great opportunity to understand and contemplate about why are we letting their behavior dictate our emotions and happiness. Indeed, our loved ones will hurt us from time to time, but how can we come out of this loop hole of expecting unconditional support?

Like a hummingbird flies over different flowers to collect the nectar until the bird is satisfied with the amount of nectar she has, she keeps flying in a beautiful pattern, forward and backward it goes over each flower. I feel that if one flower is not giving us enough nectar to nourish us, we should continue to fly and keep hovering over other flowers to seek the nectar of comfort and fulfill our souls with the sweetness.

So, if you are not getting nourishment from one person, look for other like minded people who are full of the kindness that you have been looking for. Take the flight over those flowers and be fierce like a hummingbird! Keep moving forward and pass all the barren flower valleys and fly to the valley of infinite love.

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Thinkstock Image By: Alexander Panov

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When Chronic Pain Masks Other Health Complications

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September is Pain Awareness Month.

I’m no stranger to pain. I’ve lived with chronic pain most of my life. Chronic, relentless pain. Pain from my back, hips and ribs, thanks to scoliosis. Pain from my face and head thanks to trigeminal neuralgia. Pain in my head thanks to migraine. Pain in lots of places thanks to who knows what.

I accept it…it’s just part of my life. Part of my life, part of me. I’m used to it. I get up in the morning knowing it will be a painful day, but try to get a smile on my face and enjoy what I can in life.

 

Because I have pain all the time, I don’t go running off to the doctor every time something new hurts. I tend to presume the doctor would think, “Oh, here she comes again,” then dish out some sympathy and more painkillers.

But a few weeks ago, I did go to the doctor one day.

My back hurt. My front hurt. Everything kind of hurt. But, really, that was nothing unusual. I was feeling lightheaded, but I often have low blood pressure anyway. I was feeling generally unwell. Side effects from meds can do that, so again, nothing that unusual.

My husband was becoming worried (and probably frustrated) and eventually said, “OK, if I was feeling the way you feel, what would you tell me?”

So, about 45 minutes later, I was in the doctor’s office. I fully expected him to send me back home with a mark against my name as being a time waster.

However…he was very concerned about me. Concerned about my pain, but my blood pressure was desperately low and he wanted me admitted to hospital. He was actually so concerned that he didn’t want my husband to drive me there and arranged for an ambulance to take me.

A few hours and a few morphine injections later, I was diagnosed as having acute pancreatitis. An ultrasound scan revealed it was caused by gallstones and emergency surgery was scheduled for a few days later to have my gallbladder removed.

I was on an IV drip and was being monitored closely and I couldn’t really understand why. I felt like a fraud, taking up a hospital bed. I didn’t feel that ill…I just felt fairly normal. The high dependency nurse who was checking on me assured me I was not a fraud. They examine the amylase score in the blood to check the pancreas. A normal score is between 10 and 90. Mine was over 3,600. Then she explained the severity of pancreatitis. I stopped feeling like a fraud.

But I almost hadn’t gone to the doctor because I am just used to feeling like that at times.

I had my gallbladder removed by keyhole surgery. The surgeon told me my gallbladder was extremely large and badly scarred and said I must have been living with gallbladder pain for a long time.

Well, if I had, I hadn’t known about it. Perhaps I didn’t know the difference between my normal pain and gallbladder pain, or perhaps my meds had helped to cover it up.

I was sent home to recover the day after my operation. Two weeks later, I had an appointment with my GP. I was still in a lot of pain, but that was to be expected…I thought. But my GP was concerned that I was in a lot more pain than I should have been and arranged for me to be readmitted.

X-rays and an ultrasound were done. And all my organs were looking healthy.

So the pain?

I had a broken rib. I had been putting up with the pain thinking it was normal post-surgical pain. I have no idea how it had broken.

I’ve now recovered and am back to my “normal” pain. But I learned not to just simply accept all my pain. Sometimes there might be another reason for it.

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Thinkstock photo via kimberrywood.

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How Dreaming Is Helping Me in My Battle Against Chronic Pain

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My life isn’t a piece of cake, although it would be nice because I do enjoy cupcakes! But I do try my hardest to be positive and see the best in every situation because despite what they may be, you can find something positive in it. It seems for me, it keeps getting worse.

My health keeps deteriorating and things just keep going from bad to worse. My pains are getting unbearable and doctors don’t know what to do and can’t find anything wrong. It’s very disheartening for me. I feel like a 20-year-old person, stuck in an 80-year-old person’s body. I am very stubborn and try and try again until I can do my daily tasks. That would include…brushing my hair, brushing my teeth and giving myself a bath. Do you know how frustrating that is for someone like me?

 

Running is something that gives me the freedom I need and crave. It makes me feel “normal.” Since I have taken a downhill slope (and wish I was running it instead of my health taking a fall), obviously my running has been affected. There are days where getting out of bed is a major task and I need more time to do so.

It is scary to know I am getting worse because I am the only one who feels it. My husband can see it, and my friends can see me struggle more often now, but I can feel myself in more pain than I was before. You know you struggle with chronic pain when you have more than four doctors. I am hoping one of them soon figures something out with all these tests that are being done.

However, with all this, I will never lose my positivity and my ability to dream. I have many dreams to reach, but just because I am fighting against scoliosis, seizures, chronic migraines, fibromyalgia, fiber neuropathy and other issues that are yet to be diagnosed doesn’t mean I have to stop fighting. I am stronger than them. My dreams are bigger and more powerful than they are. Nothing will keep me from achieving my dreams, and that is what my tattoo symbolizes. Hope, strength, never giving up on my dreams and, of course, my love for Minnie Mouse.

woman smiling and wearing 'the mighty' shirt with a tattoo on her arm

One must never lose the ability to chase their dreams, no matter how far or out of reach they may seem. I am a runner with tons of health issues and when I used to tell others my dreams, they would laugh in my face. Now they want to know my secret and haven’t laughed at me again. Others tell me I am out of my mind and could never do such things. I just simply smile and say, “Watch me.” And yes, I do have to work three times as hard as others because of my conditions, but I will do it because I am a dreamer.

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The Facebook Group I Started to Help Chronic Illness Patients Affected by Hurricanes

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For most of us with a chronic illness, like arthritis, we have a lot of stuff! We have injections, pills, patches, heating pads, cold packs, canes, crutches, pain relieving creams, compression gloves, socks, etc.

Now imagine if you only had a small backpack and a few minutes to put everything you would need from your home into. Depending on your situation, you might have to grab pet food or formula for your baby. In a rush to grab your birth certificate and precious photo albums for example, many things might be left behind.

Many of the victims of Hurricane Harvey faced such a devastating challenge. Flooding completely took out the first (and sometimes only) floor of their homes. Even if you were able to prepare and had your “must need” items packaged, they may have been swept away as the water came into your home. Stores and pharmacies have been slow to reopen and most have limited inventory as flooded roads have made travel to these areas extremely difficult.

As a response to this crisis, two patient advocates and I created the Facebook group: #HarveyPatients. This group was created to secure donations of items that might be missed in traditional donation efforts but that are greatly needed by chronic illness and special needs families. The group is not an emergency service and no funds exchange hands. We have a steady stream of volunteers who can either donate items or help in providing transportation to get these much-needed items directly to patients. By filling out a simple Google form, patients can request items and donors can share what they have to offer.

Our group started out with just a few members and in a week’s time has grown to almost 700 members. We have been able to help families with ostomy supplies, diabetes supplies (including blood glucose meters/strips and insulin), CPAP machines (brand new), feeding tube supplies, diapers, wipes, etc., as well as traditional items like clothing, cleaning supplies and toiletries. We have resources for refilling medications, getting contact lenses replaced, mental health assistance, etc.

I am incredibly proud of the work that has been accomplished in a few short days. The work isn’t over though and won’t be anytime soon. How can you help? First, please share our Facebook group with your social media channels – you never know if a patient will stumble upon it and end up getting the supplies they desperately need. If you can donate items or purchase items off our Amazon wish list (which ship directly to one of our volunteers), great! If you have already contributed financially or are unable to, we can use help with calling shelters to see what items they are lacking in. Want something to do with others in your community? Visit our page and view the list of needs. Grab a box and fill it up with any of the items. We can provide you with a patient or a shelter to ship it to.

This post originally appeared on CreakyJoints.

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Thinkstock photo via Harvepino.

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7 Challenges of Eating Healthy When You're Chronically Ill

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Whether you are facing a long-term mental or physical health condition, doing what the doctor says by eating healthy is not always an easy option. While it may appear as simple as going to the store and buying generic fruits and vegetables, modifying your food intake can have incredible challenges if you live with a chronic condition. Finding a way to reduce inflammatory or symptom provoking selections from your diet is vital in maintaining your overall health, despite already having a condition that you live with daily. The challenges that can make eating healthy feel nearly impossible are:

1. Expenses: With food becoming more expensive, it is more affordable to buy cheap junk food to stifle your hunger than it is to grab an assortment of meat, fish, fruits, or vegetables for a well-rounded meal. The cost of two peanut butter sandwiches pales in comparison to a meal consisting of haddock, tomatoes, cucumbers, potatoes, and squash. Many people with chronic disabilities are unable to work full-time, if at all, which means the funding for food that will nourish isn’t in the budget.

2. Grocery Trips: The frequency of grocery trips may increase as you recognize that a lot of healthy foods cannot be stored for later. People with certain mental health of physical concerns may find it difficult to leave the house, which adds increased anxiety to the task- especially if your method of transportation is also limited.

3. Decomposition: Prepackaged meals provide leniency in how long you can store them before they need to be thrown out. Natural foods aren’t loaded with the same amounts of preservatives needed to ensure that they last for ages. This leads to moldy food within a week or two (if you’re lucky), which then needs to be removed from the home via compost, which requires more work for someone who has limitations in their mobility.

4. Preparation and Time: Fast food can be a life-saver if you’ve had a long day and need to relax, but too much can lead to additional health issues. As a huge fan of microwaveable foods, I know all it takes to make a meal is to open food from a frozen box and heat it up. Two minutes later, I can have two pizza pockets ready for ingestion. Or, eight hours later, I can have a slow-cooked meal waiting for me at the end of the day. While the latter sounds and tastes amazing, the meat in it must be continuously strained, plus it takes time to wash, peel, and cut the vegetables. If you want to grate cheese or make your own bread to go with it instead of relying on high-calorie store bought bread, it adds to the work the person must do and the time it takes.

5. Energy: Most chronic illnesses come with lingering symptoms – most notably, chronic fatigue. Whether your mind is racing from daily intrusive thoughts from obsessive compulsive disorder, or your body is exhausted from becoming more sedentary than it was before an injury, it takes a lot of work to muster the energy to tackle the minor requirements of eating healthy. When given the internal decision to make something in less than five minutes or spend hours preparing a full meal with the recommended food groups, it is easier to save your spoons for another task you may need to do throughout the day, such as showering.

6. Clean Up: With more variety in your meals, there will be an increase in dishes. Instead of having to deal with a knife and plate for a sandwich, there would now be pots, pans, and a plethora of utensils to clean and put away – sometimes with the added struggle of having to scrape food off of them. This requires more time and energy to complete along with the stamina and ability of being able to maintain it regularly in order to have a healthy diet.

7. Vice: Many of us are attracted to delicious foods that aren’t the best for us, whether they consist of heaps of cheese, chocolate, sugar, salt, carbohydrates… or all of the above. When you have a chronic condition, the stresses that come along with it can be hard to manage. A person with chronic pain is negatively affected by the condition itself, along with the limitations it brings such as mobility, socializing, and strength. Someone with depression may have thoughts of inadequacy, confidence, and hope. Stimulating foods can be a temporary escape from the issue you have, which is why it can be hard to make better choices for ourselves.

However, this doesn’t mean it’s impossible! Asking for help may be difficult, but in the long run, it helps you in managing your condition while balancing out healthier options for food. If you have someone you can ask to clean up the dishes, it may save you the energy to do strength-building exercises if your body requires it. For the time it takes to wash and peel an assortment of carrots and potatoes, asking a partner, friend, or family member to do it instead may give you time to sweep, clean, or even rest instead of being overburdened by everything you have to do and the little time or energy it feels you have to do it in.

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