Ethel Nalule

@ethel-nalule | contributor
18 | IG: @ethel |
Ethel Nalule

How to Feel Confident When Using a Cane

Pain is one thing everyone has felt at least once in their life. Whether if it was physical, emotional or psychological. But when it comes to physical pain, we have acute pain and then we have chronic pain. Chronic pain is pain that lasts longer than six months, for some it lasts a lifetime. It can be due to injury or illness. In my case it was brought on by illness(s). You’d think that as long as you stay away from danger you will never have to suffer from pain. I have never broken, sprained or injured a part of my body nor have I never been in an accident. My pain was brought on from a tiny little insect smaller than most ants. A tick, carrying many infections within it and transmitting them into me. I have been in pain since 2012. It started off mild but now the pain has become part of my daily routine. I have pain in my knees, ankles, shoulders,  neck, back, bones and jaw. Muscle, joint, tendon, allodynia and nerve pain. I have had Lyme disease for years but only found out during the summer of 2015 that I had Lyme disease along with two co-infections, babesia and bartonella. Because it was left untreated for so long the effects went on to attack my muscles, joints and central nervous system. Leaving me in pain, constant fatigue and and with a few cognitive dysfunctions. I have over 20 symptoms which I will not take take the time to name, but chronic pain would have to be my worst. Every second, every minute, I am in pain. When I walk, when I sit, when I stand, when I talk and even when I open a door. Since I have been in pain for so long, it has become almost normal to me to feel this way and although it is painful and drags me down, I have had to learn to accept it. Treatment for chronic Lyme disease, babesia and bartonella is expensive and a life long journey. Mostly because it was left untreated and undiagnosed for so long, giving the spirochetes plenty of time to roam around, hide and attack. I have had to stop running (my favorite sport), going to the gym  and volunteering because I physically cannot. The pain and fatigue make the tasks unbearable. I often feel five times my age. When it comes to pain, I often wearing knee braces, sometimes I use a cane and sometimes I need neither. I never know which symptom is going be the worst each day. Every night I go to bed not knowing how I will be feeling the next day. I go to bed not knowing what kind of pain to expect the next day. Will I have four muscle knots or will I have one? Will both my knees hurt or just one? Will the pain be only on the right side of my body or will it be evenly spread out? Will I need my knee braces? Will I need my wrist brace? Will I need to stay in bed? I never know. I never thought that at the age of 18 I would be using a cane to help me get to a place in less pain. It isn’t something many people think of. We see canes as walking aids used only by the elderly. As a society we have such an ableist view towards walking aids and as teenagers we are ashamed to take our first step using a cane because we fear that strangers will laugh and/or judge us. But we are all so wrong. You do not need to be a certain age to use a cane. There is no required “cane license” you can only get once you turn 80. The cane was made to aid those with pain, weakness, balance and so many more, regardless of age. We should be not ashamed or afraid to use a cane in a public setting. If you are feeling uncomfortable it is not our fault, but society’s. If you are in pain and you need it, use it. If your vertigo is so bad and you need it, use it. It was made to help you. Who cares what others think? If it helps, decorating it is also such a fun way to rock it. I say, screw ableism. What matters most is you and your health. No one, absolutely no one, has the audacity and the right to make you feel ashamed our outcasted just because you use a cane. Do not let the stares drag you down. Stare back, smile, keep your head up and keep on caning. You are amazing and life is too short to worry about what others think. Hashtag, you got this.

Ethel Nalule

A Letter to Chronically Ill Students Returning to School This Year

Dear friend, You may not know who I am, but I’m writing this to you. I’m writing this because I care for you, and I believe you deserve every single word of encouragement for this upcoming school year. I know how sad and scared you might be to go back. I understand how much your illness can bring you down. But I’m writing this to tell you I believe in you. Yes, you right there. Each and every single one of you. Maybe this is your first time back to school after some time off, maybe you are starting college or maybe you are going back to fight through yet another year. I want you to know how brave you are and how proud I am of everything you have overcome. Take a second and look at your path and all the obstacles you have overcome. You are a warrior, and you are a fighter. The road ahead may not as clear as a transparent window; it may still be a little bit translucent, but I believe with each step you take forward and each battle you fight, it will clear up a little bit each time. This school year, don’t be afraid to reach out to the resources at your school that are there to help you succeed. Whether it’s asking for an extension or asking to write your test in a different room, reaching out for help does not make you a failure. Reaching out for help makes you a fighter and can put you on a clearer path. I ask that you remember to listen to your body. Don’t push yourself over your limit. I know how hard it can be to see your friends living and feeling like you are just surviving. But I tell you what — you are not “just surviving,” you are living. It’s just in a different way. Put your health first this school year, and don’t be afraid to stand up for yourself if a classmate speaks against you regarding your illness. Don’t let their words hurt you. With everything you have been through and overcome, those words mean absolutely nothing. You are so much more; you are worth everything. Take a stand and don’t let yourself be taken down by acts of ignorance from your peers. Not only are you strong — you are the definition of strength. Be honest with your friends. Remind them how much you appreciate their friendship. When you feel like you are letting them down on a sick day, remember that you come first before anything. Instead of getting mad, explain how much you would love to hang out and perhaps invite them over for a Netflix night. It is hard for friends to adapt when they have a friend with a chronic illness. It is hard for them to understand, and they might see you as someone continuously making up excuses. But a simple message saying, “I’m really sorry, I really wish I could hang out but I’m not feeling so well. Maybe you guys can come over for a movie later because I really do want to spend time together. I miss you guys,” could change everything. If they don’t understand, it is not your fault. Please don’t hate yourself. There are plenty of friends out there who will appreciate you and treat you the way you deserve to be treated. Also, don’t forget about your teachers. Maybe stay behind in class, and if you have to, tell your friends that you have a homework question. This way you can tell your teacher what is going on as a way of helping her understand without having to speak in front of the entire class. My dear friend — take things slowly, breathe, try your best and don’t forget to smile. I believe in you, I really do, and that smile you have looks good on you. Use it often this year. Embrace it. And each and every night, do not forget to congratulate yourself on how magnificent you are for getting through the day. Good luck this school year. May it be filled with progress, good memories, laughter and of course, plenty of rest. I wish you all the best. Yours truly,A friend with a chronic illness, too

Ethel Nalule

Inside the Mind of a Teenager With Chronic Pain

8 a.m.: I’m awake. Try not to move; if you move, your pain will start acting up. Dang it! I moved. Time to start the day, I guess. 8:30 a.m.: After the first few steps out of my bed, my knees feel as if they have been crushed. But I must make it downstairs to take my medicine. I am now on the fourth step, and the pain in my ankles and knees has increased. There isn’t much I can do besides holding onto the railing to try to decrease the pressure. 9 a.m.: Now that I have lifted up this glass of water to swallow my medicine, my shoulder pain has started. They hurt, they are stiff, they keep locking up. Wow, that glass of water was heavy, and now my wrist hurts. Why did I drink a glass of water? 10 a.m.: I am lying down now, because the slightest movement will increase my pain. Ugh, my back has started to hurt and now I can’t lie down. I can’t sit up either because my neck feels so painful and heavy. There is no winning here. I’ll try to sleep. 2 p.m.: My little brother wants me to take him to the park. I have put on my knee and ankle braces, but I can do this. 2:05 p.m.: I am regretting this decision. My shoulders keep locking up, my knees are hurting me, my neck is hurting me, my ankles are hurting me, my back is hurting me. Everything is hurting me. But he is my brother; I have to push through for him. Photo by the author (www.ethelnalule.com) 3 p.m.: I’m back at home and in a lot more pain. My skin has also started to feel like it’s on fire. That’s my nerve pain acting up. My knuckles are stiff, and I have two new muscle knots. I guess I’ll get my TENS unit out, or maybe I’ll get my tennis ball out first so I can roll my knots on it. Afterwards I might get my heating pad out and put on some pain patches. I don’t take pain killers because they do not work for me. I have been on most that are suitable for my age, both over-the-counter and prescription. The medicine I take is to kill the infections. 5 p.m.: Wishing I could go for a run. I used to run every day. I want to pick up my camera and take pictures, but the weight hurts my wrists and shoulders. I’ll just take an epsom salt bath instead, and then watch some movies. But first, I will post a photo on Instagram so all my friends think I’m doing well. Smile. Post selfie. Fifty-six likes. 9 p.m.: I make it up the stairs and get into my bed. I wonder how this could be. I have never injured nor sprained a single body part. It’s been four years. At first I only had pain in my right knee, and now I have pain everywhere. My knees, ankles, wrists, shoulders, neck, back, arms and legs. They all hurt, constantly, every single second of each day. I was not in a car accident or playing a dangerous sport. I was bitten by a tiny little bug that is a lot smaller than a lady bug. I was bitten by a tick, possibly four years ago. I was left untreated and undiagnosed for years, so the infection spread to my joints, my muscles and my central nervous system. My muscles are always so tight, when I get acupuncture they have push the needles in with force. Massages increase my pain. Nothing really helps. I close my eyes and go to bed. Tomorrow I will repeat this day all over again. If I have to fake a smile, I will. Maybe I will post another selfie on Instagram so I can seem “normal.” Oh wait, I can’t sleep, I’m in too much pain. I will take sleeping pills to try to sleep. It’s been another year, another day and another second in pain. Maybe my pain will lower down tomorrow to a 7/10. I cry and I hope. 10 p.m.: Goodnight.

Ethel Nalule

Being Diagnosed With Lyme Disease After Graduating High School

You may have heard the quote “God works in mysterious ways.” I have come to agree with this. About three and a half years ago, I thought I had pulled my right knee during track practice. We had every test possible done on my knee and they could not find anything. Yet I was in excruciating pain. This pain then progressed to both knees rather than just my right knee. Eventually I had pain in both knees, ankles, wrists, shoulders, neck and back. It started off mild. I was taken through almost every single test possible, and they still could not give me an answer. My brain function changed completely during 10th grade. I often cried in class during tests because I couldn’t figure out why everything was so different. I looked at words and questions and couldn’t understand them or put them together. I could stare at a word, for an example the word “write,” and spend over 10 minutes trying to understand what “write” meant. As a result, I never finished my tests on time. I would forget everything I’d studied (now I know I have short-term memory loss). Sometimes I couldn’t understand the lessons I was taught, but it was weird; on the inside I understood, but I couldn’t bring my understanding into reality. My grades dropped in a matter of months. I spent the next two years fighting to bring my grades up, staying after school to do homework. Our chemistry teacher checked our homework on certain days, but I asked if she could check mine on a daily basis so I would be motivated to have it done. But then I would forget about the homework, forget I had an an agenda, my fatigue would increase and as soon as I got home, I slept. I completely forgot everything until the next day when I was asked to show my homework. In the eyes of a teacher, this looked like laziness. Even my parents thought I was lazy. Many of my high school teachers wrote on my report cards, “Ethel would benefit from remembering to do homework and remembering to hand in things on time.” This upset me because I knew I could do it, but somehow I couldn’t. It wasn’t depression, it wasn’t “laziness,” it was something more. But no one, not even a doctor, was able to provide us with answers. As for my pain, I went from being someone who loved gym class to someone who needed an elevator key to get upstairs. Walking up the stairs hurt my ankles and knees, and I always found myself in the main office asking for ice. In 12th grade, I had planned to take a weightlifting course with one of my good friends, but I dropped it after a few days because I couldn’t do anything anymore. Push-ups hurt my wrists, squats hurt my knees, just walking hurt my ankles and so on. I was a runner. I enjoyed CrossFit and wanted to become great at it. Being physically active and fit was my happiness. Over time things only kept getting worse. How could I have pain no doctor could explain and have my memory decline at only 17? I would throw out my own valuables, shower with clothes on, put salt away in the freezer, spill an entire milk carton in the sink, throw dishes away in the garbage after washing them. But I believe God had my back all along. Many may argue this was a coincidence, but I don’t see it as one. I believe he guided me into meeting the right people at the right time and at the right moment. In 11th grade, I saw a new student at school who was in a wheelchair. I had seen her practicing with the gymnastics team the day before, and I thought maybe she injured herself. I didn’t know her name or what grade she was in, and she didn’t know who I was. For some reason, as I walked out of the library to my locker, I had to turn back and go to where she was with her mom. I learned her name was Kamea, and she had Lyme disease. At the time, I didn’t know what Lyme disease was. I didn’t even know what a tick was. I read all the articles Kamea shared on Facebook, and one day, I decided to start a walk with her. She loved the idea. I emailed the founder of the Canadian Lyme Disease Foundation, who put me in contact with Lyme Ontario. Two of Kamea’s friends who also had Lyme disease joined us, and together we started the first annual walk for Lyme disease awareness in our district. Over the following year, I raised awareness for Lyme disease. I was doing this for Kamea, her friends and all others with Lyme disease. But I had no idea I was also doing it for myself. I handed out ribbons at school, I made and put up posters and I even brought limes to school one day and asked everyone to do the Lyme disease challenge. I had no idea I was being educated on a disease I had, too. Kamea and her parents reached out to me when they noticed my symptoms. They advised me to get tested for Lyme, but my doctor said I couldn’t have it. I was later diagnosed with fibromyalgia and “stress.” My graduation was painful. I had to sit out my prom with a bag of ice. A few weeks later, we moved a new town, and I was advised by a doctor to see a specialist in the U.S. After being tested a couple more times, my test results came back positive. Proof of Borrelia burgdorferi (the spirochete responsible for Lyme) in my body. With two co-infections, babesiosis and bartonellosis (babesia and bartonella). I am finally undergoing treatment for something I should have been tested/treated for almost four years ago. I’ve gotten worse since the walk. I’ve been in pain for almost four years now and have experienced a lot more symptoms. But I will get better in a few years’ time. I am unable to work this summer due to being sick and going through treatment, but I know it will be worth it in the end. By organizing the walk, I was prepared for what was to come. I was taught about why it was important to keep fighting for answers. I was led to meeting the right people, and finally I had proof I was not “lazy” — I was sick. I believe God led the path and I followed. If I had walked passed Kamea and not asked what happened, I don’t know what today would’ve been like. If I had not asked Kamea about starting a walk together, I don’t know what this year would’ve been like. From the left: Ethel and her friend Kamea Treatment is a long-term process as the disease had been in me for quite some time, and I can’t wait to start feeling better someday. If you or someone you know has seen numerous doctors over the years and are still looking for an answer, don’t give up. Keep looking and keep fighting. I believe it’s about having faith and following the signs. These signs may be a gut feeling, a dream or a thought. You have to believe in yourself in order to take the first step. Follow this journey on Chronically Trying.