*I started writing this a few months ago while I was at a low point. Over the following weeks as I added to, wrote and rewrote this, I experienced ups and downs and ups and downs and ups again. It is raw in some places and unemotional in others. It is a jumble of words, thought and emotions just like I am. But my hope in sharing is that it might help someone else.*
I really am to the point of exhaustion. I feel like I am just out of steam mentally, physically and emotionally. I feel like I am on the brink of just giving up but I know that will just cause me to spiral further into a depression and feeling like a failure.
See, I don't remember a time when I wasn't sick. I was diagnosed with a rare skin disease at the age of 5 that has no cause and no cure but has left me scared and disfigured. Daily physical pain and discomfort along with mental and emotional hurt trying to cope with symptoms, physical changes and the relational challenges that it comes with can be overwhelming. The skin of the effected area is very thin and tears easily with the slightest pressure. The healing has caused scaring as well as fusing. There is also shrinking of the area in addition to the disappearance of other parts of my body in that same area. It is asymptomatic in other areas only showing as white patches of skin similar to Vitaligo.
By the time I was 6, I had gone through tubes 4 times in each ear and was wearing hearing aids because there had been so much scaring and I was left with problems hearing above middle C. Learning was a challenge as well as being the obviously different kid at school. I stopped wearing them at about 12 because I hated them. I still can't hear well and don't catch all of what people say. I ask "what" repeatedly or I go with the bits that I did hear and hope I piece the conversation together right. Or I smile and make some sort of awkward reply and hope it works. And if I am facing you, all the better because I can read your lips a little and piece together what I think I heard for an even more accurate conversation. It was around that time that I was pulled out of school in favor of Homeschooling. It was in part due to my brother being bullied and in part due to me missing 20-40 days of school every year due to one illness or another. I was hospitalized a few times with the Flu and was never surprised by a diagnosis of Strep Throat.
At 15, after years of pneumonia and other respiratory illnesses wreaking havoc due to a weakened immune system I was diagnosed with Asthma. At 16, Mitral Valve Prolapse or a "leaky" heart valve that has caused palpitations, dizziness, lightheadedness, fainting, difficulty breathing, as well as pain and pressure in my chest at times. At 17, Hypoglycemic. I spent years trying to find a balance in regulating my sugar levels and unfortunately it wasn't always the right way.
After years and years of symptoms, at 27 I was diagnosed with PCOS or polysistic ovarian syndrome. Infertility, weight gain and an increased difficulty in loosing weight, anxiety and depression, baldness that lead me to wearing wigs, excess facial hair that I shave a few times a day to keep it the unnoticeable as well as pelvic pain that will vary in intensity on any given day.
At 28 I began feeling intense pain and loss of feeling in my hands and arms. If I am working on a project or holding an object all I feel is pain and I can no longer feel the object. I can only watch what I am doing and either continue or wait until it passes. There is no specific activity that brings it on and it happens during any time of day or night. There is also no position or angel that helps alleviate the pain as it happens when I am standing, sitting, or laying down. I am often woken in the middle of the night, crying in pain, with relief and rest only found by standing up and leaning against the wall. As of recently, I am hoping, this is caused by a B12 deficiency. After a few weeks there has been little or no improvement but it has always been worse in the colder winter months so the verdict is still out.
At 32, and again after years and years of symptoms, Candida overgrowth. This has brought poor memory, allergies, depression, anxiety and panic attacks, mentally overwhelming cravings and then intense withdrawal when I am overcome by the cravings, itching, diarrhea, extremely poor digestion which causes little nutritional absorption, chronic post-nasal drip, and chronic recurring fungal infections of the skin. Now treating that and eliminating things that cause problems has revealed allergies to two categories of food that encompass almost everything. I get to look at everything I eat and figure if it is going to cause an anaphylactic reaction of a swelling tongue and or closing throat.
At 35, Meralgia Paresthetica which is a numbness in my outer left thigh due to pressure on the lateral femoral cutaneous nerve that causes now almost constant discomfort/pain ranging from uncomfortable tingling to searing burning pain. And now at 36, Perimenopause? Because with everything else, lets just toss hot flashes and night sweats into the deal along with more frequent emotional outbursts and mood swings.
I really am to the point of exhaustion. I feel like I am just out of steam mentally, physically and emotionally. I feel like I am on the brink of just giving up but I know that will just cause me to spiral further into a depression and feeling like a failure.
See, I don't remember a time when I wasn't sick. I was diagnosed with a rare skin disease at the age of 5 that has no cause and no cure but has left me scared and disfigured. Daily physical pain and discomfort along with mental and emotional hurt trying to cope with symptoms, physical changes and the relational challenges that it comes with can be overwhelming. The skin of the effected area is very thin and tears easily with the slightest pressure. The healing has caused scaring as well as fusing. There is also shrinking of the area in addition to the disappearance of other parts of my body in that same area. It is asymptomatic in other areas only showing as white patches of skin similar to Vitaligo.
By the time I was 6, I had gone through tubes 4 times in each ear and was wearing hearing aids because there had been so much scaring and I was left with problems hearing above middle C. Learning was a challenge as well as being the obviously different kid at school. I stopped wearing them at about 12 because I hated them. I still can't hear well and don't catch all of what people say. I ask "what" repeatedly or I go with the bits that I did hear and hope I piece the conversation together right. Or I smile and make some sort of awkward reply and hope it works. And if I am facing you, all the better because I can read your lips a little and piece together what I think I heard for an even more accurate conversation. It was around that time that I was pulled out of school in favor of Homeschooling. It was in part due to my brother being bullied and in part due to me missing 20-40 days of school every year due to one illness or another. I was hospitalized a few times with the Flu and was never surprised by a diagnosis of Strep Throat.
At 15, after years of pneumonia and other respiratory illnesses wreaking havoc due to a weakened immune system I was diagnosed with Asthma. At 16, Mitral Valve Prolapse or a "leaky" heart valve that has caused palpitations, dizziness, lightheadedness, fainting, difficulty breathing, as well as pain and pressure in my chest at times. At 17, Hypoglycemic. I spent years trying to find a balance in regulating my sugar levels and unfortunately it wasn't always the right way.
After years and years of symptoms, at 27 I was diagnosed with PCOS or polysistic ovarian syndrome. Infertility, weight gain and an increased difficulty in loosing weight, anxiety and depression, baldness that lead me to wearing wigs, excess facial hair that I shave a few times a day to keep it the unnoticeable as well as pelvic pain that will vary in intensity on any given day.
At 28 I began feeling intense pain and loss of feeling in my hands and arms. If I am working on a project or holding an object all I feel is pain and I can no longer feel the object. I can only watch what I am doing and either continue or wait until it passes. There is no specific activity that brings it on and it happens during any time of day or night. There is also no position or angel that helps alleviate the pain as it happens when I am standing, sitting, or laying down. I am often woken in the middle of the night, crying in pain, with relief and rest only found by standing up and leaning against the wall. As of recently, I am hoping, this is caused by a B12 deficiency. After a few weeks there has been little or no improvement but it has always been worse in the colder winter months so the verdict is still out.
At 32, and again after years and years of symptoms, Candida overgrowth. This has brought poor memory, allergies, depression, anxiety and panic attacks, mentally overwhelming cravings and then intense withdrawal when I am overcome by the cravings, itching, diarrhea, extremely poor digestion which causes little nutritional absorption, chronic post-nasal drip, and chronic recurring fungal infections of the skin. Now treating that and eliminating things that cause problems has revealed allergies to two categories of food that encompass almost everything. I get to look at everything I eat and figure if it is going to cause an anaphylactic reaction of a swelling tongue and or closing throat.
At 35, Meralgia Paresthetica which is a numbness in my outer left thigh due to pressure on the lateral femoral cutaneous nerve that causes now almost constant discomfort/pain ranging from uncomfortable tingling to searing burning pain. And now at 36, Perimenopause? Because with everything else, lets just toss hot flashes and night sweats into the deal along with more frequent emotional outbursts and mood swings.
As I was growing up I didn't know how to relate with people. I tried to smile and act happy all the time. I didn't want to be a bother to people, bring others down, draw attention to my differences, or have them think poorly of me. "I'm fine" or "I'm doing great, how about you were and sometimes still are my standard answers, quickly deflect and redirect. As a child, young adult and even still, with so much going on, how do I answer that honestly. It was private and awkward to explain, 99% of people can't relate, and again I didn't want people seeing me wrong, so I just don't try. Plus, it is what I was used to. It might be a rough day, it might hurt, there might be pain and irritation, a new tear or fissure, but that is what normal is for me, so how else do I answer other than fine or great? Do you have an hour? Do you know what you are getting yourself into asking me that? Do you really want to know or are you just being socially polite? Better to seem the happy, friendly, shy, awkward, loaner girl.
You know at times, my heart hurts for people who are diagnosed later in life with chronic illness because they remember what life was like before. They remember all the things they used to be able to do and they now watch as their body, personality or outlook changes as they struggle with this new body that they don't even recognize.
This is all I have known. I try not to dwell on my problems or let them get me down but I have my moments when it all becomes overwhelming. I want to push forward and show myself I can do it, I can beat it all whether there is a cure or not. But I get tired of pain. Tired of being strong. Tired of trying to grin and bare it. Tired of struggling and fighting for balance. Tired of pretending I'm okay. Tired of trying to act normal. Tired of pain. Tired of feeling out of control. Tired of exhaustion. Tired of coping. Tired of feeling betrayed by my body. Tired of being careful. Tired of only treating symptoms and never curing diseases. Tired of making progress and having set backs and then starting all over again, over and over again. Tired of feeling less then female. Tired of pain. Tired of crying in the middle of the night. Tired of being exhausted. Tired of loneliness. Tired of things that will never be.
I have these down moments. I feel trapped here at times. It might be days or weeks, but eventually I see the sun again and life continues forward. I put on my happy face. Normal is a facade, but I refuse to wallow in self-pity. I know nothing good will come from that. Try to become the happy face I wear and embrace positives beyond the physical. Try to not think about me. Focus, and then take one step at a time.
I am sick and it is invisible to the outside. And so most never suspect, never know, but I go on.
I can do this.
And in doing this, maybe I can encourage others to go on. To take it one step at a time. To not dwell on setbacks; to acknowledge the pain, frustration, loss, setbacks, new limitations. Morn for a time. But remember that you are more then your illness. More than your struggle. More then your limitations. More then your setbacks. More then just physical. More then just mental.
You are beautiful. You are loved. You are wonderfully made. You are perfect the way you are. And you are not alone. You are never alone.
And in doing this, maybe I can encourage others to go on. To take it one step at a time. To not dwell on setbacks; to acknowledge the pain, frustration, loss, setbacks, new limitations. Morn for a time. But remember that you are more then your illness. More than your struggle. More then your limitations. More then your setbacks. More then just physical. More then just mental.
You are beautiful. You are loved. You are wonderfully made. You are perfect the way you are. And you are not alone. You are never alone.
