Abayomi Afolayan

People  living with chronic pain understand that pain does not end in your body. It affects every other aspect of your life. Sickle cell disorder has affected different aspects of my life over the years, and this includes my career choices. There are quite a number of widely accepted triggers for sickle cell pain and stress is one of them. In my case,, emotional stress impacts me so much more than physical stress. As someone with so many passions and interests, this makes pursuing my dreams complicated. For instance, at a point in my teenage years, I found a passion for playing basketball. I really enjoyed watching it and I wanted to see if I could play it too. With sickle cell, I knew it was going to be tough, but I had high hopes and wanted to give it a try. I mean, why not just try instead of limiting myself? It didn’t take long for me to get ready and join a local basketball team. Every evening I went to the basketball court and soon I began to train. The training usually lasted  one to two hours and made me realize basketball can be one of the most stressful sports to play. There was no opportunity to rest and you’re always running up and down the basketball court. Unfortunately for me, sickle cell anemia meant I could only play for 20-30 minutes at a time. After that, I got too tired and fatigued. Sometimes, I started to feel dizzy or feel a slight headache because of dehydration. At that point, I knew I had to take a rest. In less than two months, I had to quit because I was having frequent pain, especially in my thighs. That was how sickle cell disorder stopped me from playing basketball. Although I was sad, I didn’t let that stop me from trying out other things I was interested in. Modeling was another thing that caught my interest – my dream was to walk on runways as a fashion model. I wasn’t big and muscular like the models I saw on television and in magazines. Thanks to the delayed growth complication that comes with sickle cell, I was exactly the opposite. It took a lot of research and a mindset change to convince myself that there is more to modeling than the fashion models I saw in the mainstream. As I was ready to kick off my modeling career, I started to feel an awkward pain in my left hip. At first, I ignored it, but later the pain got worse.  I had to put my modeling pursuit on hold and focus on getting better. Later, I was diagnosed with a sickle cell complication called avascular necrosis. Avascular necrosis is the death of bone tissue due to a lack of blood supply. This is common in people living with sickle cell disease and it usually occurs in the joint. Avascular necrosis affected the top of my left femur and in less than two months, it became difficult for me to walk without feeling pain. I started using a walking aid to reduce weight on my affected hip. It became obvious that my modeling career was fading away as I started to limp.. Did I quit? No. I made the decision to try one more time despite my disability. The decision was one of the toughest I have ever made. Having to go to auditions limping with a walking aid was one of the scariest things I have ever done. I remember limping to one particular modeling audition, and it was as though all eyes were on me and my leg. I managed to pull myself together and get through the audition. Even though I was not contacted, I felt successful. After the audition, I decided to put my modeling career on hold until I could get hip replacement surgery, which is the solution to avascular necrosis. After all these career choices didn’t pan out, I had to find ways to make money from home. It was the only stress-free way  I could think of and it allowed me to rest my hip just as my doctor advised. If the unpredictable nature of sickle cell disease has taught me anything on my career journey, it’s to always take prompt action. Every moment is precious and you should do what matters most to you right now. You have no idea what can happen in the next minute, and should cherish the days that you feel your best.

Every person living with sickle cell disease will tell a different story about how the condition has affected them, and I’ve learned over the years that sickle cell disease impacts everyone differently. Sickle cell disease is a hereditary disorder that is inherited from both parents who have the sickle cell trait. It is a blood disorder that causes the red blood cells to become misshapen and break down. This change in the shape of the red blood cells causes the red blood cells to clog up and obstruct the flow of oxygen, which then causes pain or other complications to the affected area of the body. Many people associate sickle cell disease with this pain, but there is more to sickle cell disease than that. My first sickle cell crisis In 2016, I was preparing for my first exam at my university, and I was excited and nervous. The pain started as a minor ache in my lower back, which I ignored because I thought it would get better if I just rested. I took a nap, which was interrupted when the minor ache had become more intense. It became a hammering pain in my lower back which gradually moved up my spine. I could barely walk; I could only make it into the hospital by leaning on my parents for support. It was around midnight, so everywhere was silent and calm, but I could feel and almost hear the pain slamming against my ribs. When I was seen, the nurse decided to give me a medication that calmed my nerves and sent us back home so that I could relax and sleep. But then later that night, the pain came back worse than ever. I was in tears, and returned to the hospital where I was admitted to get better care. My red blood cells had become so clogged up they had stopped blood flow from reaching the muscles in my black. This is an incredibly painful medical emergency called a sickle cell pain episode or crisis. I am grateful that I have a good relationship with my doctor who is also a sickle cell disease advocate. That way, if I ever do go to the hospital, I know I have someone who’s on my side. Fortunately, they are rare for me, and I haven’t experienced one since. However, even though I don’t have these pain episodes often, I have dealt with other complications of sickle cell disease. Self-denial and sickle cell Growing up as a child with sickle cell, I lived in self-denial. A lot of things contributed to this, and one of them was the information I got as a child with sickle cell disease. As a child, I was led to  believe that people living with sickle cell are always in the hospital, and there weren’t many options for help. However, I later found that scenario wasn’t true for me. In fact, I didn’t miss school because I was admitted and I didn’t have much pain so it was difficult to accept that I was living with the disease. This self-denial attitude made it difficult for me to find where I belonged. I found it difficult to advocate for myself and tell people how sickle cell was affecting me or how I wanted to be treated. It took me a lot of years and connecting with the right people and information to become educated about the different ways sickle cell impacts those who live with it and the different ways that the condition can progress. It was only after I increased my knowledge of sickle cell disease that I began to come to terms with the fact I was going to have to break out of my denial and deal with the fact that I was living with this condition. How sickle cell has impacted my body and my life The first sickle cell complication that I had from sickle cell disease was delayed growth and anemia. Because my red blood cells aren’t made like typical red blood cells — they are sticky, inflexible, and the wrong shape — they get tired quickly and die sooner than normal. The normal red blood cells die within 120 days but in those with sickle cell disease, red blood cells die within 10-20 days. This means that there is a shortage of red blood cells. The shortage causes anemia and delayed growth. I was the smallest kid among my peers, which caused me to feel insecure about my body and become socially withdrawn. It was difficult building a relationship with others because I thought people would think of me, and I always felt like I was being judged because of my size. So, I avoided socializing with others. The bullies in my school didn’t make it any better for me. I felt powerless to stand up against them because I knew I couldn’t physically protect myself. In addition to the impacts on my stature and mental health due to bullying isolation, sickle cell also caused me to have anemia because my red blood cells can’t carry enough oxygen to the tissues in my body. Due to anemia, the whites of my eyes have a yellowish-tinge, my skin looks pale or gray, and I experience a lot of fatigue. I could not partake in many school activities because of the fatigue. I used to play football in the compound with my neighbor and my older brother and I always get tired first and fast. Some days, it gets so worse that I can’t even find the strength to get out of bed. Despite the challenges I faced as a younger kid, I met some great friends as a teenager who helped me better understand myself and feel more accepted despite a sickle cell disease diagnosis. Today, I’m 24 years old and although I still struggle with sickle cell disease, I have found that the experience has taught me empathy and compassion. I never hesitate to help others because I understand what it’s like to struggle and experience pain. If you’re reading this and feeling overwhelmed by the diagnosis, know that you’re not alone. It took me a long time to realize for myself that sickle cell disease does not have to define you – get to know yourself, what you love and what your passions are. There’s more to you than sickle cell disease.

Have you ever had days when your illness makes you feel like you are fine one minute, but the next minute you want to just remain on your bed all day even when you have planned appointments and events? Then, keep reading. It is frustrating when your illness forces you to stay at home, but what choices do we have? You have to respect and listen to your body. I know that sometimes staying at home all by yourself can get boring, but I have some ideas for you that can help you survive the day. Here are 30 things that can help you kill boredom when you are home: 1. Revisit your goals. I have a book only for my goals and dreams and I always try to revisit them whenever I’m alone at home. It is easy to get lost in the struggles of life and forget to focus on your dream. Sometimes, you need time to bring yourself back on the track of your goals. Next time you find yourself bored at home, revisit your goals. If you haven’t written your goals, write them down. A written goal becomes a plan and back it up with actions. 2. Rearrange your wardrobe. When was the last time you checked your wardrobe? I’m sure there are some clothes you probably don’t need any more or some you’ve forgotten about. You need to go check your wardrobe, rearrange your clothes and get out the ones you don’t need. 3. Clean the entire house. This might not sound like fun to you but at least if you’ve got energy to spare, then you should keep the house clean. Cleaning the house could make you feel amazing at the end of the day and you can spice it up with some music. It doesn’t have to be deep cleaning, perhaps the dusty windows or just a little clearing of cobwebs will do. Make sure not to stress yourself. Do what you can and leave the rest for another day. 4. Read your mail. Seeing a number of unread pieces of mail can be really annoying, especially if it is a lot that you have been letting pile up or ignoring. Now that you have the time, read all of it and also unsubscribe from newsletters that you don’t need anymore. Everyone has that newsletter they are tired of seeing! 5. Delete unwanted stuff from your phone. I can’t count the number of saved pictures on my phone that I thought I would use but I never did. I’m sure you have pictures like that too. Delete them! Take a trip around your phone, from your gallery to music library to file managers. Delete every document, picture, music and anything you don’t need anymore. You could even free up some space on your phone when you delete stuffs you no longer need. 6. Exercise. You don’t need to go the gym, you are at home and you’ve got home equipment that will help you stay active. Although you don’t need to engage in strenuous exercises. Just walking round the house is fine, or dancing or maybe skipping in the compound. 7. Cook a meal. When last did you decide to cook a meal out of just pleasure? Cooking can be fun especially when it is not because you are hungry or in a hurry. Try a new recipe, read up food blogs and cook whatever meal you find appealing there. And don’t forget to have fun as you cook and eat it! 8. Watch a movie. I love movies, I am a big movie and television shows fan. Maybe you are too, then being alone means movie time. Whether on Netflix or on television, I’m in for movies. 9. Journal. Staying at home can also be a time for you to get creative. I am gradually building my journaling habit. Journaling is a great way to connect with the real you, your spirit. You can get out all your thoughts and ideas. It is important. 10. Scroll through your phone’s gallery. Now, you are not scrolling to delete unwanted stuff here. You are scrolling to just refresh your mind with the pictures, watch the old videos again and stare at old pictures. 11. Take a walk. I always make my walking session late in the evening, you could do yours anytime. Get your mind off everything and walk around your surroundings. And when you walk, be mindful and observe everything as you walk. 12. Read a book. If it’s been awhile since you read a book, you now have time to read one. Grab a drink or fill a bowl with popcorn and submerge yourself in another world, follow the author as they take your hands and show you a new world. Some fictional stories I recommend are “Five Feet Apart and “To Kill a Mockingbird.” 13. Listen to the radio. Are you bored and lonely too? You can switch on your radio and listen to the talents. Radios are a great way to feel alive even when everywhere is quiet and you are alone with your thoughts. 14. Read a blog. I love reading lifestyle blogs and fashion blogs. You can as well open a blog, if you love blogging. Learn something new from a blog or from a YouTube video. Oh, I love the latter. 15. Sleep/Rest. While you are at home it is important not to drain all of your energy. Get some rest, have a nap. Sleep without thinking about what time it is or how many hours you slept. 16. Try an online class. Since you have lots of time, find something you have always been interested in learning. Buy an online course on it and study. You can also enroll for one of the numerous free online classes. 17. Try yoga. I have always wanted to try yoga, perhaps next time I find myself at home I will try it. Yoga is a great way to connect your soul. 18. Watch a video on YouTube. I’m a sucker for comedy and motivation. I find myself watching either of the two. Choose from the millions of videos on YouTube and enjoy your day. 19. Do some research on your illness. You never know what new discovery has been about yourself. Take time to research. I like checking out celebrities and successful people that live with my illness so you can add that to your to-do list. 20. Experiment with your hair. Hair lovers, whether you have short or long or curly hair, being alone is a great time to experiment on it. Style it in different ways. Try different products. You get the gist. 21. Take a long hot shower. 22. Take some selfies. 23. Plan something. 24. Do online window shopping. 25. Just sit and observe the weather. 26. Write a letter to your future self. 27. Stand or sit in front of the mirror and observe yourself. 28. Reach out to someone you haven’t heard from in awhile. 29. Make a list of your goals (personal, professional, health). 30. Scroll through your social media feed. I hope these ideas helped! Would you add anything to this list? Tell us in the comments.

Depression and chronic illness are closely related. Living with a chronic illness increases the rate of getting depressed. According to WebMD, it is estimated that up to one-third of people with a serious medical condition have symptoms of depression. Although I haven’t been in a depressed state, I’ve been close and I have had people living with sickle cell disorder like me message me that they feel depressed or feel constant sadness and hopelessness. I understand how a chronic illness can cause tremendous changes in our lives and dash our hopes when we least expect, so when I hear someone who lives with sickle cell disorder say they are depressed, I don’t freak out. Depression isn’t too far away from someone with a chronic illness. However, it is normal to feel sad or anger or frustration towards your illness sometimes. It is normal for your emotions to be heightened once in a while, so at times it can be hard to distinguish what is “normal.” Depression is a serious mental health condition associated with the lowering of a person’s mood. It takes a professional to determine whether you are experiencing depression or not, but here are some signs someone who’s depressed might show (according to Healthline): Loss of interest Depression can make you feel zero interest in things you love, activities you once looked forward to. You begin to feel less joy from doing activities. In someone living with a chronic illness, it could mean losing interest in going for regular medical routine, taking your routine drugs. It can even mean loss of interest in sex. When you realize you no longer look forward to activities that make you happy and give you adrenaline, it might be a sign of depression. Get help. Hopelessness and suicidal thoughts Sometimes pain can drive you “crazy” and make you say awful things: that’s not what I mean when I say suicidal thought. You’re in pain, it is understandable. But when you are in little or no pain at all yet you feel like taking your own life andthink about it on a consistent basis, then you need to speak to someone. It might be a sign of depression. Uncontrollable emotions I recently found out that depression can cause mood swings. One minute it’s an outburst of anger, the next you’re crying uncontrollably without anything seemingly triggering the emotions. Sometimes, it might not switch. It might be just constant anger or just constant pity. Sleeping problems and fatigue Depression has also been linked to insomnia and vice versa, because insomnia can also lead to depression. When you are getting less sleep and are fatigued — although many chronic illnesses, like sickle cell disorder, come with chronic fatigue (anemia) — hence it can be difficult to determine which it is. That is another why you may need to get professional help. Changes in appetite and weight Depression can cause change in appetite and weight and it may differ for each person. Some people may experience an increase in appetite, while others won’t be hungry and will lose weight. There are different ways depression could manifest in people living with chronic illness. Let’s talk about them. Ways depression could manifest in people living with a chronic illness: New diagnosis Many chronic illnesses like mine come with different complications. Sickle cell disorder for instance has numerous possible complications: there’s anemia, avascular necrosis, stroke, among others. Getting diagnosed with a complication might cause depression. When I was diagnosed with avascular necrosis, I thought it was over. I felt hopeless like my world was about to end. I was unknowingly falling into depression. It isdifficult to bear what comes with a new diagnosis, it comes with new symptomsor new level of pain. You have to start trying to understand your body again and that might lead to a depressive state. Isolation Dealing with a chronic illness is not just about the chronic pain, it has a lot more to do with the mental health as well. Struggling with a health issue that many people do not understand can cause isolation, which is a common cause of depression. Isolation and loneliness are something many people living with sickle cell and otherchronic illness can relate to, because we do not want to tell just anyone about our health. We don’t want to get judged or pitied. Tips for dealing with isolation If you find yourself isolated, don’t beat yourself up just keep trying to speak to people more. If that doesn’t seem like working, be like me, hide behind the screen. Find friends, support online. Join an online support group, there, you’ll findpeople who can relate to your story. Finances Managing a chronic illness is certainly not easy or cheap. The financial expense of living with sickle cell disorder can be a cause of depression. The hospital bills and other bills do not stop, yet finding or keeping a job for a source of income is tough. Some others think people living with sickle cell are not employable because of constant chronic pain. Some people living with sickle cell disorder cannot search for jobs because the disorder can be debilitating. Tips to improve your finances Have multiple source of income Find jobs that can be done from anywhere Create a passive income system Here’s a post on the perfect jobs for people living with chronic illness. Let’s talk about how to fight depression with chronic illness. Five ways to fight depression with chronic illness: 1. Get support/reach out A support system is very important when you live with a chronic illness. It could be just a friend or family member or even a support group. Support groups helped me massively when I needed it. After being diagnosed, I felt so lonely and sad, but when I joined a support group, it helped me connect. I realized that I was not alone; all those thoughts, feelings, pain, it was not just me. When you are not alone, it might reduce your chances of being depressed. So I suggest you join either an online or offline support group relating to your illness today. Joining a support group will also reduce getting lonely and isolated. You have people to talk to, and the best part, they can relate. 2. Get moving Getting out of bed might feel like a daunting task for someone who is depressed, let alone exercising. But exercising has been proven to be as effective as medication for relieving depression symptoms and also preventing a relapse. It is beneficial to get at least 30 minutes exercise a day, and this can be spread throughout the day. And it doesn’t have to be rigorous exercise, a light evening walk can get your mind busy and improve your mood. 3. Eat healthy What we eat have a huge impact on us and how we feel. That is why it is important to watch what you eat. Reduce your intake of foods that might affect your mood, such as alcohol, caffeine and high fat foods. Then make sure to take lots of vitamin, don’t skip meals and minimize sugar. 4. Always find a way to motivate yourself Just as Zig Ziglar has said, “motivation doesn’t last… that’s why we recommended it daily.” Living with a chronic illness is tough, we all need that push to keep going. As someone with a chronic illness dealing with depression, you need it to motivate yourself often. I love watching motivational videos and reading self-help books. Maybe the books and videos I watched helped me during the times I needed them. The lives of people like Stephen Hawkings and Nick Vujicic inspire me to get up and go no matter the mood I’m in. I think you should check these people out. 5. Get professional help None of the tips above beat getting a professional help. If you observe any symptoms of depression, it is important to talk to a health professional about it. Conclusion Fighting depression with chronic illness is not an easy ride, but it is possible torecover or prevent it. Depression is a serious medical condition that needs professional help and support; do not try to beat it yourself. Speak up, seek help and know that you’re not alone. Together we can beat chronic illness and live life to the fullest. How do you deal with the depression that comes with living with a chronic illness? Share your best tips below.