No. It's such a simple word. So why is it so difficult to say? I was going through my New Years resolutions last week and ranking them from lowest to highest priority. At the top of my list was "learn how to say no to people". I'm a people pleaser through and through, and at the end of the day, I know it can easily get in the way of my spiritual and personal growth. So today, as a kickoff to my number one 2021 resolution, I'm going to tell you everything I've been learning about saying no.
1. It's not mean to say no One of the things that holds me back from saying no to someone is the fear that I will come across as mean or that I would be perceived as a bad person. Thinking this way is so damaging, and it's a curse of words that I am trying to break within myself! There is nothing wrong with setting healthy boundaries. For example, I tend to get extra fatigued as a byproduct of my chronic illnesses, so my social battery drains fast. If someone wants to get together or needs something time consuming from me, and I have a really hectic day/I'm not feeling well due to my illnesses, I'm learning how to say "No, I can't do that today". Lately life has been more hectic than normal. Between having two jobs and other various commitments, my rest time has been very limited. So saying no is even more of a necessity! It takes longer for me to recharge. So saying no isn't mean- it's literally just self care! 2. You're allowed to say no- even if you are available! It's easy to think that just because your schedule is clear that you have to say yes to plans or making commitments. But just because you are free, does not make you obligated to share your time. It's important to pace yourself so that you don't burn out! Make time to recharge this year. Everybody needs days off- it's healthy! So don't feel obligated to make commitments, even if your schedule says you're free. It's not mean- it's self care. Be kind to your mind, spirit, and body! I'm learning to get better at this everyday. It's a process, so be patient with yourself! 3. If it makes them upset, then they're not for you It's okay to be disappointed if you don't get to make plans. But any person who has some level of respect for you should understand that saying no means you just need to take care of yourself. If they can't take no for an answer then maybe they're not the right person for you! Life is stressful enough without an upset person nagging you to make commitments that you're too drained to make. Take care of yourself! Mental, physical, and spiritual health is a gift that is meant to be protected and cherished. You have the authority to say no. Own it- you can still be kind and loving while exercising this power. I would encourage all of my people pleasers out there to practice saying no this 2021. I'll be right there practicing with you!
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For those who don't know, I'm a Christian. I've believed in God and had a relationship with him since elementary school. A part of believing in God is also believing in his power and might. So when I say I wholeheartedly believe he has the power to heal the broken, I mean it.
I was diagnosed with Ehlers Danlos Syndrome, Dysautonomia, and Lupus when I was 16 years old. Fully aware and confident in God's ability to perform miracles, I prayed that He would heal me and take my pain away. I prayed and prayed, and years passed, but I still wasn't healed. One day I just remember how incredibly intense my pain was, and how I cried out to Jesus, asking one last time if he could take it all away. He did not. And so I asked myself some questions. Right now, I am going to take the time to tell you what these questions were, and provide the answers that God gave me over the last few years. The first question I frequently asked God was "Why are some people healed, but I'm not?" I was complaining to a close friend one day about how frustrated I am with the fact that some people were being restored and healed, while I was stuck in limbo with the same ailments and illnesses. I remember very clearly she said to me "Maddy, those people's testimonies are different than yours. Maybe they were healed for the benefit of their testimony or salvation. Maybe you're not healed yet because you still have some growing to do." This made sense to me. I thought, "Wow, maybe he'll heal me later on in life". Only recently did I come to terms with the fact that I will never make a full recovery. The second question I had was "Did I do something to deserve this?" I was talking to my wonderful young adults group leader, and she answered this question so clearly for me. She said "Our God isn't one who will cause pain and heartache- it's not in his nature". She is so right. How could a God who's nature is purely good give me something so bad? Of course, he allowed these illnesses into my life. But he didn't give them to me. And so no- I didn't do anything to deserve the illnesses that were brought upon me. God will only allow tragedy in the lives of his children if it will lead to something good and prosperous. The last and biggest question I had for God was "Am I ever going to be healed?" This was the most difficult answer I recieved. I prayed and prayed about this, but God ended up telling me no- that I would not be healed. And here's why: One night I was reading my bible and something stood out to me. 2 Corinthians 12:8-9 says: "Three times I pleaded to the Lord to take my pain away from me. But he said to me 'My grace is sufficent for you, for my power is made perfect in weakness.' Therefore I will boast all the more gladly about my weaknesses so that Christ's power may rest on me." Some people are meant to have a miraculous recovery. Some people will have such an astronomical spiritual/personal growth due to their body being healed. However, that is not what would happen to me. Yes, it woud be wonderful to not have these medical problems, and it would be wonderful to not be in pain all the time. But is that going to be the most impactful path for my life? Will I find the most joy in my recovery? Or will I seek the most joy through the process of my journey? I really don't believe it is God's will for me to be healthy. I believe God's intentions for my life are for me to find joy through trials, ecourage others who are ill, and learn to seek new perspectives through the unique lense God has placed in my life. If you are reading this wondering if God will ever restore your physical health, I would encourage you to seek God's will. You will never find peace in your life until you come to terms with God's perfect will. I will be praying that each and every person struggling with this issue will find rest. God may not intend to heal you physically, but he will always mend your broken heart, and he can always be a beacon of joy in your life. Everyone compares themselves at one point or another. It's so easy to feel like your life isn't as perfect and put together as others. And with social media, it's even easier. I constantly find myself looking at people's instagrams, and feeling like like my life doesn't measure up to theirs. I noticed it's even moreso easy to do this when you're chronically ill.
For those who don't know, I suffer from Lupus, Ehlers Danlos Syndrome, Dysautonomia, and a whole slue of other chronic illnesses. There are days where I wake up feeling like I'm on the brink of death, and other days where I wake up feeling like I can conquer the world. But the days where I wake up in a flare up are the days I doubt myself the most. I look in the mirror. I have bedhead, undereye bags, butterfly rash on my face, a dislocated shoulder, and the pain in my body makes it feel like my world is crumbling. I can't compare to the girls on instagram. I will never compare to their insane beauty standards, flourishing romances, and perfect lives. And while those issues are diffiult enough to deal with, I always ask myself; if I can't see the beauty in myself on my low days when my body is an utter mess, then how could someone else possibly see it? Will I always be a burden to those around me? I'm here to tell you that there is always someone who will see you as worthy. And He is perfect. Of course- there will always be those who cherish you, and see you for your true beauty; your parents, your family, your husband/wife, friends, etc. However, the one whose opinion matters the most is your Creator. Something I've learned in the past few months is that you will never stop comparing yourself, if you don't find your worth in what truly matters. You won't find your worth through social media, or a so-called picture perfect life. You will only find your worth when you begin loving the person God created you to be. If you don't view your life through the purpose and will that your Creator has for your life, you will always be searching for validation in the wrong places. To all of my chronically ill friends: You are NOT unworthy because your body isn't healthy. You are NOT less than another person because your limitations are different than other people. You are fearfully and wonderfully made! God's purpose for your life is so much greater than you could ever comprehend. Don't ever compare yourself to the photoshop and smiles you see on social media. It's not real. YOU are real. Fall in love with your authenticity, and use it to inspire others. To all of my healthy friends: Life is messy- you don't have to be chronically ill to know and experience that. Your worth does NOT come from comparing yourself to other people's seemingly perfect lives. You're unique and one-of-a-kind. Don't fall in love with the idea of an instagram perfect life. Embrace life's ups and downs, and rejoice in your trials. All I'm trying to get at here is how important it is to be mindful of your individuality. You weren't created to be like everyone else. You weren't created uniquely only for you to compare yourself to others. You were created to be YOU<3 My family always called me beautiful growing up. So why do I think I'm ugly?
I post pictures on instagram and facebook, and friends and family will pay me compliments. I always respond with a simple "thank you" or maybe a heart emoji. But little do people know, I don't believe the compliments they give me. How can I believe someone else thinks I'm beautiful when I can't even believe it myself? I've always had a very low self image. I've always gotten picked on in school and church. Kids weren't always the nicest, and I didn't really know how to speak up for myself until I got older. So I'd let my peers call me names, and say mean things about me. And as they continued to talk down on me, I believed their words more and more. And although it's been a few years since high school and many years since middle school, those words they said to me still resonate with me. I still believe them. Last night was a very difficult night for me. I layed in bed crying. I kept asking myself the "why can't" questions; "why can't I look like so-and-so?", "why can't I be beautiful without makeup?" "why didn't I glow up like my friends?" As I layed in bed feeling sorry for myself, I realized how unpractical I was sounding. I know there are other girls and guys out there who struggle with there apperance. And so to those who feel ugly like I do, let me speak to you... You are too beautiful for this world. Stop finding your worth in the world's definition of beauty. You are a masterpiece designed by God himself. The God who created rainbows and waterfalls and mountains also created you. And our purpose isn't to sit around worrying about whether we are pretty enough. We are meant for so much greater than that. Our purpose isn't to get wrapped up in the world's definition of beauty. We are meant for greater. I recently read a blog post written in the perspective of God writing a letter to a girl who struggles with self image. This part really stood out to me and changed my perspective. It says, "I know you think you aren’t pretty enough. But I did not create you to be enough for the world. I didn’t create you even for this world. I created you for something bigger than getting 100 likes on your selfie. I created you for something more important than having a hot guy comment the fire emoji on your bikini picture. I created you to be in relationship with me, your Father. I created you to find joy in your purpose, not how you look on a Friday night." Don't allow yourself to be consumed in thoughts of doubt and self-deprication. Be filled with peace knowing you are beautifully created. You are loved beyond measure, and you are beautiful beyond measure. Before I get into this story, I owe you all an apology. It's been far too long since I posted an update. I love writing about my illness and being able to help those who deal with what I suffer from. But the past few months have been a bit distracting. There was a situation that took place a few years back which has impacted my mental/emotional/spiritual health immensely. Writing has always been so theraputic for me, so I'm not sure how I went all of these years without writing about writing about this experience. So it's 3 a.m. tonight, and I have sort of a busy day tomorrow, but I need to get everything off my chest and put into words. Hopefully sharing my story with you will not only be of benefit to me, but it will also encourage you to face your demons head on! Don't be afraid to talk it out, cry it out, and fight. In my Junior year of high school, before any doctor confirmed what illnesses I had, my family and I were searching for answers for what was wrong with me. I previously saw doctors in New York City, Upstate, and private practice. It was recommended that I try a rheumatologist in Rochester. She had good reviews, and the University of Rochester had a wonderful reputation. So we made an appointment. When the appointment came around and we went in, I received a diagnosis. It's a condition called AMPS (Amplified Musculoskeletal Pain Syndrome). AMPS has all sorts of very different definitions out there, but from how it was explained to me, I can say it's essentially a condition in which an individual develops an abnormal pain reflex. Essentially, a person with AMPS has pain for no reason, besides the brain mixing up pain signals. Before I go any further, it's important you know that I do NOT have AMPS!!! This was a very obvious and careless misdiagnosis. And if you have AMPS, this doesn't mean your treatment will be the same as mine was. However, I would like to warn people who were in the same place I was; if you are searching for answers explaining your pain and medical complications and your doctor thinks they figured it out, look into the condition yourself. Make sure your doctor also does a thorough physical exam and blood panel. And if you or your child is going to do the same treatment I did, then be sure to do your research and ask for opinions from other people who have chronic illness. I don't want anyone going through what I went through in Rochester. Getting back to the story now; after this rheumatologist diagnosed me with this AMPS condition, she immedietely sent me into a rehabilitation program through the hospital called the Amplified Musculoskeletal Pain (AMPS) program. This treatment consisted of three components, Physical Therapy, Occupational Therapy, and Psychotherapy three days a week for 3 months. I live in a city two hours away from Rochester, so this form of treatment required a lot of travel. On my first day of the AMPS program, I sat down with the head Physical Therapist and she explained to me how the program was supposed to work, and how it would positively change my health. The point of this treatment was to desensitize my body to all forms of physical pain. That would mean, constant vigorous exercise in physical therapy, using hypersensory items to desensitize my skin and muscles in occupational therapy, and discussing my pain with a psychologist. She said the point of the program was to push my pain limits, but that if I felt unsafe or if I felt any damage was being done, that they would step back and allow me to do my exercises at a slower pace. They told me all I needed to say was stop and that they would stop whatever activity they were doing with me and adjust it to what I could handle. But as the program went on, I realized that what she said was a lie. There were no limitations and there was no stopping. One of the scariest parts of the program were that parents were not allowed in the back with us. My mom tried to come in to talk to my physical therapist once, and was told she was not allowed back with me. That was a big red flag. I'm going to go through and explain each component of the program for you, so you can understand what it consisted of, and what I was put through. ----- Starting off with Physical Therapy, here is the briefest way I can explain what happened: My physical therapy exercises started out normal. Running on the elliptical for 45 minutes, core building exercises such as planks and crunches, and muscle intensive exercises such as animal crawls, and weights. But as the therapy continued, the exercises began getting more and more vigorous. PT did the most damage to my body. It completely threw my Lupus, Ehlers Danlos Syndrome, and POTS out of whack. My physical therapist would take me into the stairwell. You needed a keycard to get in and to get out. This stairwell had it's own thermostat and the heat would be cranked up. She'd set a timer for 1 minute and I would have to go up and down all three flights of stairs. This may seem like an easy task for most people, but do take into consideration the heat was cranked up high, my joints constantly dislocate, and my immune system attacks my own body. Another exercise she'd have me do was run elliptical for an hour. My heart rate had to stay at a steady pace. And there were no cool downs or breaks. In one instance, I remember completely blacking out and falling on the floor. My hearing was completely muffled out, and my ears were ringing louder than they ever had before. I thought I was going to be sick. Other patients came over, knelt down and offered to help me up. My PT would tell them I was being dramatic and that I had to get up on my own. A patient doing exercise next to me asked if an ambulance needed to be called for me. My PT would say no, and that I was trying to get out of exercising. I would be doing planks, and I could feel my shoulders popping out of place. My wrists and elbows would be red and swollen for days. The exercises were so intense, I would black out mutliple times during each session. And each time the intense presyncope would start, I would ask for a few seconds to stop the exercises and breathe. But that wasn't allowed. Taking breaks to catch my breath were "excuses" and sheer laziness. Mind you, my heart rate was going up rapidly, and my blood pressure was plumetting to the point of blackouts and full on syncope. Remember when the head Physical Therapist said that there were limits? Remember when she said I could stop if I felt unsafe? I felt unsafe every single session; I was so scared. My joints were dislocating, my blood pressure was dropping, and I was passing out, and no one allowed me to seek any sort of medical attention. One day I came limping out of one of my sessions, ready to go home and rest. My mom asked if I was okay, and why I was limping. I told her my hip and leg didn't feel right. She asked if I talked to the Physical Therapist about it, and I said I was afraid. So next session, my mom spoke with the PT and asked her to check out my hip and make sure it was okay. My mom left, and the PT looked at me. She said "what's wrong?" and I told her about my hip and how I thought it was dislocated or subluxed. She looked back down at my hip. She told me "you're totally fine. The popping feeling and pain you're experiencing isn't a bone moving. It's just a tendon snapping when you move". She never watched me walk, and never once touched the joint to see if it felt off. This happened in Late September. In January, long after the program ended, I saw a new doctor and Physical Therapist. My new, and EDS knowledgable PT looked at my hip once and didn't even have to touch it. He said, "how on earth are you walking right now? You're hip is dislocated." ----- Moving onto the next part, Occupational Therapy: While Occupational Therapy didn't take as much of a toll on me physically, it took an enormous toll on me mentally. The exercises, like PT, started off light; but as the days went by they got more and more vigorous. Again, the therapy from this part of the rehab didn't leave me with many long term health issues. But I am still facing distress from the memories of what I went through. The exercises started off with moving my hands around in large containers of rice/beads, using vibrations on my muscles, and changing the temprature of my body from hot to cold in short time incriments. All of these forms of therapy were supposed to desensitize me to pain. As the days of therapy moved on, the methods they used rose to a vigorous level. As I recall, the first desensitizing exercise they had me try was to put my hands in a machine that moved grains of sand around at a rapid pace. I'm sure that sentence's description was a bit confusing, so allow me to explain how it worked. The machine was big, and it had a long tube attached to it. That was where I inserted my entire arm. This tube would be sealed tight to my arm with a tie, and velcro. Within moments, the machine would heat up to around 120 degrees, and tiny grains of sand would be moving around rapidly at a ridiculous speed. It was possibly the most painful 10 minutes of my life. When I would take my hands out of the machine, they would be red, dry, burning, and sometimes blistered. Due to my Ehlers Danlos Syndrome, my skin is prone to easy scarring and trauma. My collagen is so loose that it causes a weakness in my skin. Needless to say, this form of therapy didn't work for me. And although I complained and asked to stop the therapy, they continued anyway- completely disregarding my complaint. Another exercise I had to do to complete this program was temprature desensitization therapy. They would start off by putting very hot tap water into a container, and cold water into another. They would start by putting my hands in the cold water for 1 minute and 30 seconds. And then immediately after the time was up, they would dry off my hands and put my hands in the hot water. We tried this method of temperature desensitization for a couple of weeks, but got no progress in how much pain I was experiencing. After all, the point of the program was essentially to get me to experience such high amounts of pain that the pain signals in my brain would be numb to my chronic pain. And since this method wasn't working good, they would take a kettle of water and put it on the stove to boil. They'd fill up one bucket with the water that was boiled, and the other with freezing cold water with ice. They put my hands in the ice water first, for 1 minute and 30 seconds. When the time was up they would, again, dry my hands. And then put my hands in the boiled water. I don't have any words to describe to you how much pain I was in. I was a flute player and after using this method of therapy I struggled moving my fingers on my fute. When I think about how much discomfort I had as a result of this therapy, I cringe. I'm flooded with the memory of pain that should've ended the moment I told them to stop. There is so much more that happened in OT that was completely unnecessary, and should've stopped when I said the word. But I can't change the past, and I can't control the actions of the therapists in the program. All I can do is move forward, and learn how to overcome what I went through. ----- The final part of the program is psychology: The reason I had to get a psychologist during this program was because it was believed that due to the pain signals getting mixed up in my brain/nervous system, my brain not only needed retraining from PT and OT, but also from psychotherapy. I mentioned in the beginning of my therapy sessions that I felt like I had Ehlers Danlos Syndrome or Lupus (little did I know at the time, I had both). Mentioning this to the psychologist was a huge mistake. I never really believed I had AMPS to begin with. The condition didn't really match my symptoms. I am very in tune with my body, and I usually can sense what is wrong. That is a skill you develop when you have chronic illnesses that impact most aspects of your life. When I told my psychologist I was certain I had Ehlers Danlos Syndrome and Lupus, she said, "well why would you think you have those?" I told her why each condition matched my symptoms. The Ehlers Danlos Syndrome symptoms I had were severe joint hypermobility, joint subluxations, fragile/velvet skin, and hearing loss. The Lupus symptoms I had were even more extensive than the EDS symtpoms; joint pain/red hot swollen joints, raynauds, hair loss, positive ANA, butterfly rash, etc. When I shared with her all of the horrible symptoms I was having, she immediately shot me down. She said "EDS is rare. The probability of you having it is so incredibly slim". And then she said "I don't think you have Lupus. You have AMPS. You are in this program because you have AMPS". I knew I didn't have AMPS. And I knew the program was killing me. I mentioned to her the many issues I was having with PT and OT. How I was put in a stairwell with the heat cranked up, how I had to rotate between putting my hands in boiling and ice water, how my joints were popping out of socket and no one would help me, and how despite blacking out/passing out on the elliptical, I was given no break. She couldn't help me. And I was stuck in a program that would scar me. I truly believe this therapist was trying to help in any way she could. But I also think she was trying to sell me the idea that this program was going to fix me. This part of the AMPS program left me feeling like my pain was invalid, that the mistreatment I was facing was nonexistent, and that the medical problems I knew in my gut I had were all in my head. ___ I went into this program completely deceived. Not only was I lied to by the University of Rochester, I came out mistreated and seriously injured. After the AMPS program ended I got a new team of doctors who were able to properly diagnose and treat me. After seeing my new PT the January after the program, I learned that I have a dislocated hip, multiple subluxed vertabre, a dislocated knee cap, a dislocated and subluxed shoulder, and multiple dislocated ribs. I should've been in a wheelchair. But I was out living my life despite the odds. The reason I'm writing this blog entry isn't to share my sob story, or to gain sympathy. I don't want anyone to be sad I went through this program because I came out so much stronger. I'm sharing my story with you because there are other young people out there who will get misdiagnosed with AMPS. And those people who are misdiagnosed will likely have to go through the program I went through. Not only is it inaffective and expensive- it's going to leave you with scars. If you or someone you love feels they are being mistreated by medical professionals, SPEAK UP! Protect yourself and others from corrupt medical programming like the AMPS program. If you feel you have been misdiagnosed, don't give up the search for answers. You may feel like you will never get closure, and that you will always be dismissed by doctors, but there are good medical professionals out there who want to help you. You just have to keep searching. In the end it is so worth the hassle. There is light at the end of the tunnel. If you don't have any kind of illness and don't understand I word I just wrote, learn from my experience, and show compassion for people whose health is poor. You might not understand what they are going through, but they need encouragement and a shoulder to cry on. If you've read this far, thank you. It is because of you that awareness is being spread for invisible chronic illnesses. You are a beacon of light in our community. And you have the power to shine your light and compassion on someone who needs it.
In the fall of 2015, my hair started falling out. And when I say it was falling out, I mean there were around 12 patches of quarter-golf ball size patches of hair missing from my head. I was mortified! I tried so many different products, supplements, and cover ups. Nothing helped the damage my hair was facing until a couple of weeks ago.
I am on around 14 different prescription drugs, and between that and heat damage, my hair was an absolute wreck. I used to have very curly hair, but it has thinned out and lost texture almost completely. It went from curly and coarse to a straight, damaged mess. It made me extremely self conscious- my curly hair was what made me who I was... Or so I thought. Before I tell you about my hair journey, I want to give you all a little disclaimer. Your hair is NOT what defines you! If you are struggling like how I struggled, it isn't the end of the world- I promise. I let this problem destroy my self-image. Your hair doesn't make you who you are- it's only a small contribution. So just remember that. Around May of 2016, my hair loss was at it's worse. I don't have many good before pictures- here is the best I can find:
And here is my hair, two weeks into repair:
First of all, I would like to say, nothing has fixed my hair loss. However, my hair isn't nearly as damaged as it was, and appears/feels much healthier than it was previously. I approached my hair dresser (I will link her facebook page at the end), and asked her what she thought I should do. At first she was a bit puzzled. She wasn't really sure what would help me, so she spewed out a few good suggestions. One of them was biotin supplements. I tried those for about 4 months, and it didn't do anything except grow out the miserable, damaged hair that I was trying to desperately to repair. She also suggested twisting small strands of my hair when I got out of the shower to try to get my texture back. That didn't work much for me either.
Around two weeks ago, I sought her out, desperate for advice once again. She suggested I try a shampoo and conditioner called Tea Tree, Special Shampoo and Conditioner. After one use, I noticed an immediate difference. My hair wasn't falling out nearly as much, it felt stronger, softer, and less brittle. I also noticed my curl was beginning to come back. If you're interested in purchasing this shampoo and conditioner, click here (I'm pretty sure amazon is the cheapest place you can buy it):
And if you're interested in seeing my absolutely OUTSTANDING hairdresser's work, here is her facebook page: Hair by Terri
Whether you are losing your hair, or experiencing damage, know that this doesn't define you! You are strong. This may be the most upsetting thing in the world right now, but I promise that this too, shall pass.
xoxo, Stay healthy and strong <3 Self care is one of the most important aspects to achieving remission- I'm pretty sure that goes without saying. But what is self care? And do you maintain good self-care? It has taken me years to develop the habit of good self-care, and it's still a work in progress. So I thought I would tell you what I've learned when it comes to taking care of yourself.
I'm not always the best when it comes to self-care. But this is just an opportunity for us to learn how to be better at it together. I hope some of these tips were helpful for you!
xoxo, Stay healthy Sometimes the people you think are there for you, actually aren't at all. It can be difficult to figure out who has your back and who doesn't. Lately I have been going through the process of discovering what friends are truly by my side, or around for their own benefit. I'm not going to lie, it has been extremely difficult on me. I mean, it would be difficult on anyone. But being chronically ill definitely puts you in a position where you absolutely have to come to terms with who is an encouragement and who is a negative influence. I am going to share some red flags I have picked up on over the past few months, regarding how to detect a positive friend vs. a friend who weighs you down.
2. No Check-Ups When I was out of school for months, some of my friends didn't even send me a text asking where I was. It was absolutely heart breaking. But the fact of the matter is, if you don't hear a peep from your friend in a few weeks after you've been absent for an extended period of time, they shouldn't be your close friend. Your close friends should be people you have a meaningful and intentional relationship with. If you're just sitting by the phone waiting for a text you'll most likely never receive, you'll just be setting yourself up for more disappointments. 3. Awkwardness It's okay to feel awkward at times. I'm an extremely awkward human being- that's who I am. But sometimes you have to just have to push past it and be there for the person you love. Some of my friends can't do that. And it's a problem. If you can't talk about topics that are important to you without getting an invalid or discouraging response, then you need to find a different friend to confide in. I understand some people's personalities are just downright awkward (such as me). But you can't tip-toe around your best friend forever in order to make them feel comfortable. One of my oldest friends has a hard time talking about my illness with me. Whenever I bring something up about it, I get zero response. It's not acceptable, and you shouldn't have to deal with it. 4. Unsupportiveness Everyone has passions and dreams. And everyone should have friends that support those passions and dreams. But there are some people out there who are too self-absorbed to show that kind of support. For example, most of my friends don't read my blog. And that's okay- reading these sort of things aren't for everyone! All that matters, (at least to me), is the effort. But sometimes there comes a point where you feel alone and unsupported. And I felt like that for the longest time, until I discovered who my true friends are. I'm not saying that you should completely eliminate these kind of friends, or that you should dump them. Continue to show them love and compassion. It's just better to invest your energy in people who will reciprocate it. It's going to be a long and difficult process. It's hard distancing yourself from friends you have had for a long time. But believe me- surrounding yourself with positivity is sooo worth it!
I kid you not- people I don't know have come up to me to ask me what my life expectancy is. Someone else (who I also didn't happen to know) told me to stop taking my medicine because that's the thing that's making me ill. These are the sort of questions and statements a lot of us chronic illness folk have to deal with. It's not necessarily pleasant for us, but we do what we have to do to get through social events where these sort of topics come up. But seriously, it's no picnic. So this is why I'm about to warn you about some touchy topics, and what you should say instead.
It's hard to figure out how to be helpful to someone who is chronically ill. It's an extremely intimidating topic. But learning what to say and what not to say when you're interacting with someone who has a chronic illness is important, and there isn't enough awareness out there to help with this social conflict. Stay healthy <3 Chronic Illness isn't chronic illness without it's endless supply of medical equipment and health products. Throughout the past few years, there have been a few items which have been extraordinarily helpful to me during my flare ups. Maybe those of you who are in pain can get some use out of the products I'm featuring.
2. Kinesio tape. Kinesio tape (K tape) is another item that has been there to pull me through some rough patches. K tape is an extremely popular tool for those who suffer from Ehlers Danlos Syndrome. Since I have EDS, I'm prone to dislocations. So if my shoulder pops out and it seems to feel more unstable than usual, I tape it so that it stays in place. I have used many different types of K tape, but my favorite at the moment is Rock Tape (despite the fact that it gives me an allergic reaction). Besides unstable joints, K Tape is good for pain management and hypermobility. If you're interested in learning more about how to use K Tape, there are many videos and articles out there explaining it all. 3. Bed Rest Pillow Most individuals with chronic illness spend a lot of their time in bed. Sometimes, the only thing we have the physical capacity to accomplish is sitting up. That's why I love having a Bed Rest pillow. It's great for my posture, because it prevents me from slouching, like a normal pillow would do. I received mine for Christmas a few years ago, and I believe it's from Target for around $20.00. 4. Electric Blanket My body temperature regulation is horrible. One minute I'm so hot that I feel like I could jump in the snow, and the next minute I'm freezing. Usually I'm always cold. So when that happens, I like to plug in my Electric Blanket. It immediately warms me up, and I always feel a huge improvement in my pain when I'm warmer. Being Chronically Ill is annoying. It's always so difficult to find comfort- especially in a flare up. I hope these items can be of use to you someday! Stay Healthy <3 |
AuthorHey everybody! My name is Maddy, and I write about some of the chronic illnesses I face. I'm currently a communnications major, and hope to get a job writing full time. I have faced chronic illness symptoms since November of 2015 and was officially diagnosed in January of 2017. Some of the major illnesses I have are Ehlers Danlos Syndrome, Postural Orthostatic Tachychardia Syndrome/Dysautonomia, Mast Cell Activation Syndrome, and Lupus. I'm also currently facing a GI and structural neck diagnosis. My mission for this site is to uplift and encourage spiritual growth for people who face chronic illness of any kind- including mental illness. Archives
January 2021
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