I have terrible insomnia. I’ve spent hours of my life lying awake in bed late at night/early morning, praying for sleep. Patients suffering from chronic pain often find their problems are compounded by insomnia and sleeping disorders.

The term “insomnia” includes all types of sleeping problems, such as difficulty falling asleep, difficulty staying asleep, and waking up earlier than desired. Of all medical conditions, pain is the number one cause of insomnia.

A study done between 2009 and 2012 in Pittsburgh found that more than 70 percent of adults with Sickle Cell had sleep disturbance. Pain and sleep are inter-related, so much that pain disturbs sleep and disturbed sleep amplifies pain and increases risk for developing chronic pain.

Chronic pain can impact sleep in a number of ways. To understand how a pain problem can make it difficult to fall asleep, try thinking about your routine before bed.

You most likely try to eliminate all distractions or other influences in an effort to relax and fall asleep. This may include quieting the room, turning off the lights, eliminating any other noises, meditating, trying to get comfortable, and beginning to try to fall asleep.

But for chronic pain sufferers when trying to fall asleep, there are no distractions except for the pain, and the perception of pain can actually increase when you quiet one’s environment which can cause problems and the longer falling asleep is delayed, the more stressful the situation becomes.

Patients will often report that one of their primary pain management tools during the day is to distract themselves from their chronic pain by staying busy with other tasks (e.g., reading, watching television, engaging in hobbies or crafts, working, interacting with others, etc.).

Recently I have been trying to develop better “sleep hygiene” and I think I’ve got a few tips that may help someone with insomnia like me, pain or no pain.

Have a comfortable pre-bedtime routine

• A warm bath or shower.
• A warm milk drink without caffeine.
• Meditation, or quiet time.

Keep a regular sleep routine

• Go to bed at the same time, each night. Wake up at the same time. Ideally, your schedule should remain the same every night of the week.

Don’t stay in bed awake for more than 20-30 minutes

• If you find your mind racing, or worrying about not being able to sleep during the middle of the night, get out of bed and sit in a chair in the dark. Let your mind race while you are in the chair until you are sleepy, and then return to bed.

Don’t watch TV, read in bed

• No TV or internet during these periods, because they will just stimulate you more. Exposure to artificial light after dusk and before bedtime may reduce sleep quality by suppressing production of the hormone melatonin.

Do not drink caffeine after 5 pm

• Caffeine’s half-life is 5-6 hours. I try not to have any caffeine after about 5pm and if your one of those that is easily affected by caffeine try not to have any past lunchtime.

Have a quiet, comfortable bedroom

• Set your bedroom thermostat to a cool temperature. Generally, a little cooler is better than a little warmer.
• If your pets wake you, keep them outside the bedroom.
• Your bedroom should be dark. Turn off bright lights.

My brother wrote quite an interesting and even more informational blog post on sleep that explains the science behind sleep.

Our thoughts are our own creation. They are a part of us and are not generated externally. Siddartha Gautama once said “We are what we think. All that we are arises from our thoughts. With our thoughts, we make the world.”

But we live in a world where everything is in constant flux and we often have no control over what happens to us and in the world. Learning to calmly ride the waves of uncertainty instead of being tossed about by them brings with it equanimity. We’re in bodies and they get sick and injured and old. Living in denial about this keep us from making peace with the lives that we have. Life is uncertain and unpredictable.

I define mindfulness as paying caring attention to our present moment experience. Being mindful in this way can help ease both physical and mental suffering. Physical discomfort has 3 parts to it: 1) the unpleasant physical sensation itself; 2) our emotional reaction to that sensation (anger, frustration); 3) the stressful thoughts we spin from that (“I’ll be in terrible pain the rest of my life”). This means that two of the three parts (2 & 3) that make up our experience of legit pain and discomfort are made up in our minds. Wild.

Mindfulness can help people reduce their physical feelings of pain and discomfort by transforming their relationship to it – which makes getting mindfulness practice into the lives of Sickle Cell (SC) patients like me all the more worthwhile. One of the most difficult symptoms for SC patients to manage is chronic pain. Approximately one-third of SC patients experience chronic pain.

Something that increases the chance of hospitalizations and makes chronic pain worse for SC patients is inflammation. Inflammation is part of the body’s natural immune response. It evolved as a means of protection, helping the body repair itself after accidents or other challenges. Chronic inflammation, however, is a long term inflammatory reaction, linked to issues – such as prolonged stress, or poor diet. It can give rise to issues like asthma, chronic sinusitis or rheumatoid arthritis. Some go as far to say that inflammation is the root of most diseases, including the big ones such as heart disease and cancer.

Mindfulness meditation has a calming effect on the body and the mind, enabling greater relaxation. David Creswell and his colleagues, who study the impact of mindfulness meditation on the brain and the body, found that the daily practice of mindfulness lowers inflammatory molecules and stress hormones by about 15%. When compared with a non-mindfulness centred stress management course, meditation was much more effective at lowering biological markers than a counselling based approach.

A study from UCLA found that long-term meditators had better-preserved brains than non-meditators as they aged. Participants who’d been meditating for an average of 20 years had more grey matter volume throughout the brain — although older meditators still had some volume loss compared to younger meditators, it wasn’t as pronounced as the non-meditators. Meditation helps preserve the aging brain.

A review study a few years ago at Johns Hopkins looked at the relationship between mindfulness meditation and its ability to reduce symptoms of depression, anxiety, and pain. Researcher Madhav Goyal and his team found that the effect size of meditation was moderate, at 0.3. If this sounds low, keep in mind that the effect size for antidepressants is also 0.3, which makes the effect of meditation sound pretty good. It’s effects rival antidepressants and meditation is, after all an active form of brain training.

In 2011, Sara Lazar and her team at Harvard found that mindfulness meditation can actually change the structure of the brain: Eight weeks of Mindfulness-Based Stress Reduction (MBSR) was found to increase cortical thickness in the hippocampus, which governs learning and memory, and in certain areas of the brain that play roles in emotion regulation and self-referential processing. There were also decreases in brain cell volume in the amygdala, which is responsible for fear, anxiety, and stress – and these changes matched the participants’ self-reports of their stress levels, indicating that meditation not only changes the brain, but it changes our subjective perception and feelings as well.

If, as some scientists think stress hormones like cortisol are a significant source of the inflammation that causes some of the chronic and life-threatening illnesses we experience, then mindfulness meditation, practiced regularly, is likely to lead to a happier and healthier life. If mindfulness can really help prevent chronic illness, then that’s a great argument for living more mindfully. We would be happier and live longer.

Shame is an unpleasant self-conscious emotion typically associated with a negative evaluation of the self, withdrawal motivations, and feelings of distress, exposure, mistrust, powerlessness, and worthlessness.

I’ve dealt with a lot of shame these past 3 years since I developed Avascular Necrosis in both my hips due to my Sickle Cell. I had a left hip replacement 2 years ago and hopefully I’ll have my right hip replaced in the coming months this year.

A chronic illness can often lead to intense feelings of shame and lowered self-worth. We struggle to find physicians that are patient enough to treat us, friends that are willing to stand with us during the ups and the downs, and employers that can accommodate our limitations. And that is just the beginning… In our daily lives, we are inundated with images of beautiful people and strong, healthy bodies. We consistently encounter places and situations that are not accessible. This causes us to internalize the implicit, but far from subtle, attitude that we are not wanted, we are not attractive, and we are not important enough to make an effort for. The heavy doors too difficult to open with a cane in hand, the steps, the fast pace everyone without mobility issues is used to had me feeling alienated, outcast, angry, rejected, and shamed sometimes.

I despised the mental image I had made of myself with a cane so much that I never used one up till recently because I was ashamed. I struggled through months of pain and a slight, but rapidly worsening limp, because I didn’t want other people to judge me, come up with stories in their heads and ask me questions. It took me forever to realize that no one really gives a shit anyway, they’re too busy dealing with their own problems most of the time.

Unresolved shame can lead to feelings of depression, anxiety, and low self-esteem. Shame may also be a symptom of some mental health diagnoses, such as body dysmorphia, or the product of a traumatic experience, such as rape or sexual assault. Living with shame, regardless of the shame’s source, can be a lonely and demoralizing experience.

The experience of shame can be deeply unpleasant. People experiencing shame are struck by the overwhelming belief that they—as opposed to their actions or feelings—are bad. In some people, this may inspire a change in behavior. In others, shame can be paralyzing.

Shame is not rational. You may be capable and loved by many, but still feel shame. Shame is visceral and can defy logical reasoning. As we reinforce these shameful thoughts day after day, they become ingrained in our self-image.

Unlike other primary emotions, such as anger or sadness, shame lacks a channel of release. When we feel sad, we cry. When we are angry, we shout. Shame stays inside us, without an easy means of discharge.

Shame comes with a lot of shoulds. If you find yourself shoulding all over yourself or someone else, you’re pushing shame. That’s gross. Quit that. You can’t change the past, but you can change how you feel about the past. If there is one thing I can pass along from my current life with chronic illness, it is that we don’t need to live in isolation. We don’t need to be perfect to be loved. There is value in the vulnerability required to be a part of a real community. Finding that community is among the most important things we do as we grow older. I will continue to remind myself that those who would shame me or ask me to be anything other than who I am are not my people, and I need to let them go.

I used to think I was strong when I didn’t need help. I have since learned there is great strength in the vulnerability of asking for help, having people in your life that will authentically say “Yes” or “No,” and knowing I can trust in that truth.

This brings me to my final point. Most of us will experience chronic illness as we age. It could be living with cancer, autoimmune disease, diabetes, heart disease and so much more. Things that used to kill are now becoming chronic. How would you like to be treated if your body suddenly began to malfunction? Imagine how you would want your friends, family, loved ones to care for you, and that is the beginning of learning what you can do for others.

It’s 2020 and yet when you tell someone you are vegan you still get puzzled looks sometimes. And if not “awesome yeah me too” their reply is “wow really? I don’t think I could. Why are you vegan?” I can’t describe how much I despise that question ‘why are you vegan?’. Because factory farms are horrific places where animals aren’t treated as living, sentient beings but as products and pieces of the industrial food machine, because I feel healthier, lighter, sharper, because I don’t have as many major acute pain episodes, not even minor ones. Because I want to be. All those are my reasons so I hate justifying the reason why my diet is different from yours.

I’d been very inconsistent with my diet for about 7/8 years but I got more motivated to stick to it when I kept running into the term “anti-inflammatory diet” when researching about nutrition and Sickle Cell. But why is inflammation bad for us, anyway? And what does food have to do with it?

Inflammation is a part of your body’s normal response to infection or injury. It’s when your damaged tissue releases chemicals that tell white blood cells to start repairing. But sometimes, inflammation is low-grade, spread throughout the body, and chronic. This chronic inflammation can do damage to your body. It can play a role in the buildup of plaque in your arteries that can up your risk of heart disease and stroke. It’s also associated with a higher risk of cancer, diabetes and other chronic conditions.

The choices you make at the grocery store can have an impact on the inflammation in your body. Scientists are still unraveling how food affects the body’s inflammatory processes, but they know a few things. Research shows that what you eat can affect the levels of C-reactive protein (CRP)—a marker for inflammation—in your blood. That could be because some foods like processed sugars help release inflammatory messengers that can raise the risk of chronic inflammation.

The good news: Foods that are anti-inflammatory tend to be the same foods that can help keep you healthy in other ways, too. So eating with inflammation in mind doesn’t have to be complicated or restrictive.

Simple rules for anti-inflammatory eating:

1. Eat more plants. Whole plant foods have the anti-inflammatory nutrients that your body needs. So eating a rainbow of fruits, veggies, whole grains and legumes is the best place to start.
2. Focus on antioxidants. They help prevent, delay or repair some types of cell and tissue damage. They’re found in colorful fruits and veggies like berries, leafy greens, beets and avocados, as well as beans and lentils, whole grains, ginger, turmeric and green tea.
3. Get your Omega-3s. Omega-3 fatty acids play a role in regulating your body’s inflammatory process and could help regulate pain related to inflammation. Find these healthy fats in fish like salmon, tuna and mackerel, as well as smaller amounts in walnuts, pecans, ground flaxseed and soy.
4. Eat less red meat or none at all. Red meat can be pro-inflammatory. Aim for a realistic goal. Try substituting your lunchtime beef with fish, nuts or soy-based protein a few times a week.
5. Cut the processed stuff. Sugary cereals and soft drinks, deep-fried food, and pastries are all pro-inflammatory offenders. They can contain plenty of unhealthy fats that are linked to inflammation. But eating whole fruits, veggies, grains and beans can be quick if you prep ahead for multiple meals.

I can’t say I regret not going vegan much earlier because I wasn’t ready to learn about it. But I am glad I just happened to be introduced to it thanks to my Seventh Day Adventist college 8 years ago. I was still young and ignorant about diet and how important it is in an average individuals life and especially important for anyone with a condition like mine. I would recommend that every sickle cell warrior take up an anti-inflammatory diet if not going all the way vegan.

Note: This is a personal blog and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.

I simultaneously felt pain and relief when I first uttered the words “I have Sickle Cell and I am ashamed”. It was sort of liberating. For the last couple of years I couldn’t quite put my finger on the pressure I was feeling. I was frustrated. I was sick frequently and my health (or lack thereof) was preventing me from reaching my goals. I’ve had sickle cell anemia my entire life… and I am just now realizing how ashamed I am that I don’t fit into what society deems “normal.” The shame that attaches itself to you when you have a chronic disease can sometimes be overwhelming and consuming.

When I was a child I was very fortunate; my crises were few and far between – so much so that I can remember each of them from the age of 4 to 19. I remember the pain, the confusion, and the missed days at school. I remember how horrible I felt, and how I was worried that I would be so behind in my schoolwork. The one thing that I don’t remember feeling is “different.” I was either too young to realize that not everyone was sick like me or I just never got sick and had such normal teenage years with my age-mates. I would go out, party all night, hangout all day with my friend during holidays. My mother took such great care of us that I never looked at sickle cell as something that would change the way I lived, I never felt ashamed. 

In the eighth grade I used to skip school whenever it would rain during winter time, something that seemed so normal to me, I just didn’t want to get sick whether it be pneumonia or a cold, I wasn’t even thinking in terms of getting a crisis. I explained to my friends, the best way a 13-year-old teen could, that I had sickle cell disease and I could get really really sick. Long story short, they teased me so much and every time it rained I would start skipping school on random days to throw them off. My mom did her best trying to explain to me that this was normal and nothing to be ashamed of, that other parents should be doing the same thing especially in winter . But the damage had been done. For the first time I felt “different” and ashamed, and I learned that having sickle cell disease could be used against me. I never wanted anyone to know again. I carried that shame, and my chronic disease became my secret. 

Because my sickle cell presented differently as a child, it was easy to hide. This continued into high school. I never really had visitors at the hospital outside of my immediate family; friends never visited. And when I missed school, I just told my friends I was sick. No one outside of my family knew I had sickle cell. I just thought I was protecting myself, but now I know that the shame of being different caused me to hide myself. 

After 21 I lost count of how many times I was hospitalized, because my crises started happening more frequently and they were harder to bounce back from. Sickle cell showed up with a vengeance, seemingly making up for lost time. By this time I was in college, and fighting to keep up with my classes because I was getting sick so frequently. It took me seven years to graduate undergrad. It was then when I felt the shame of not keeping up with my peers. The feeling of being behind was so embarrassing: Seeing all of my classmates graduating before me felt like I had failed.  Because having sickle cell had never held me back academically before, this was a new type of shame, a new type of defeat. 

As I moved into the stress of adulthood, my crises started getting worse. In a year’s time I was either in a crisis, recovering from a crisis or going into a crisis. More than the physical pain, I started to feel the mental and external pressure of being sick.

By society’s standards we all should go to college, get a degree, and get a job where you can climb the ladder into a rewarding career – all while pursuing a family and striving to leave a legacy. No one really admits it, but we all can get caught up in the rat race of striving to be a part of the norm and to fit into the social construct of “normal.” I know I did and still do. I fell into the trap of trying to gain “success,” doing my best to forget that I have sickle cell. Having a chronic disease changes everything, including the dreams you have that are shaped by society. Failing to meet the standard brought about a shame that undermined almost all of my hopes and dreams.  

As hard as it is to admit… it is humiliating to be sick. Especially when you live in a world where the expectation is that you are healthy, but you can’t “keep up.” Living the life you always dreamed of seems just out of reach. When you constantly have to stop because your body is betraying you. It’s embarrassing. I have a hard time not blaming myself for not being able to do the things other young adults my age do. The shame has almost become just as much of a burden as sickle cell itself. Thinking that I should be strong enough to overcome the physical and mental pain that comes along with sickle cell. I am ashamed. 

I am ashamed about not being able to do what I used to.

I am ashamed about HAVING to rest in between daily activities. 

I am ashamed about being 27 and still dependent on my parents.

I am ashamed about taking 7 years to get a degree and not the suggested 4.

I am ashamed about not being able to work a 40-hour week.

I am ashamed about having to take days of rest after an event or after traveling. 

I work 100 times harder to appear normal. When I’m healthy I can easily hide my sickle cell. When I’m not healthy I hide myself. 

All because of shame. 

Recently, like this year, I have decided to confront my shame. I didn’t want to live in shame anymore. I started to look at my life, and I realized that the circumstances that I was ashamed of were actually things that I should be proud of myself for.

As hard as it is, I am starting to change my perspective. I am starting to confront the shame I am carrying. Instead of telling myself that I should be ashamed that I am “different” or that I am not “keeping up” … I am telling myself that I am resilient. That despite sickle cell and all the complications that come along with it, I am still here. I am still surviving and trying my best to thrive. In confronting the shame, I am learning to accept that yes, I have sickle cell and because of that, I have to live a certain way that is different from that of a healthy person. But that doesn’t define who I am. I have chosen to stop beating myself up for things that are not my fault. 

I have a chronic disease and I am resilient. 

Wrestling with shame has brought me to some truths: I cannot put my life and health in jeopardy just to align myself to societal standards. Shame is too heavy a burden to carry, especially when I don’t have to. I am doing the best I can and that is enough.