Have you ever felt so exhausted that you just can’t seem to regain energy no matter how much you sleep or how balanced your diet is? If so, you may be experiencing adrenal fatigue. Adrenal fatigue is when the adrenal glands are exhausted and unable to produce adequate quantities of hormones, primarily cortisol, due to chronic stress or infections. Adrenal fatigue is a term to encompass a collection of nonspecific symptoms, such as body aches, fatigue, nervousness, sleep disturbances, low blood pressure, and digestive problems that can occur when adrenal hormones are insufficient.
I’m so Exhausted!
I’ve experienced adrenal fatigue numerous times. In fact, I am currently experiencing an episode and am actually annoyed with myself for not realizing and treating it sooner. I have been exhausted, but more so than my normal exhaustion. I wake up exhausted and there’s nothing I can do to regain energy. I am dragging all day, but then very awake at night and cannot fall asleep. My eyes, hands, and feet get very swollen and puffy. I also get intense salt cravings where all I want to eat is salty chips and popcorn to satisfy this craving. I actually went to the grocery store this morning and wanted to buy a bag of chips to eat for breakfast. That’s how intense my salt cravings can be.
You may be wondering how I figured out that all of these symptoms were actually because of adrenal fatigue. Years ago when I was diagnosed with Hashimoto’s, I was also tested for adrenal fatigue, but I did not realize that at the time. I was not diagnosed with Hashimoto’s in a typical way, but rather as the result of my own detective work and with the help of a nurse practitioner I had met through a Facebook group at the time. I had some labs done locally, and she helped me interpret them and I eventually flew to see her in California for further testing and diagnosis. It was during this visit that I did a spit test for cortisol and my adrenal fatigue was detected.
The Answer’s in my Spit!
During the spit test, you collect samples through a 24-hour period in order to see how your cortisol levels change throughout the day. My test came back that my cortisol in the morning was super high, but then be completely depleted and eventually spike up again. It was all over the place. I found out that this is what what causing my salt cravings and irregular sleeping patterns.
By the time I knew it was adrenal fatigue, I was happy that it had a name, but still didn’t really understand how having the diagnosis would help me get through it. With the help of my nurse practitioner, we figured out a regimen that works for me.
She told me to start drinking “adrenaline cocktails” and instructed me on how to prepare them. She said to mix orange (apple or cranberry) juice (preferably, fresh-squeezed, but packaged it okay) with ½ to a whole teaspoon of salt and ¼ to ½ teaspoon of cream of tartar and then to drink this concoction. The juice provides a quick source of sugar and nutrients, the salt, sodium, and the cream of tartar, potassium, which tend to be lacking during episodes of adrenal fatigue. This cocktail allows all these things to be replaced quickly.
Mmmm….Adrenal Cocktail
I know what you’re probably thinking: Gross! Who could actually drink that concoction and not get sick? That’s actually a good way to figure out if you have adrenal fatigue. If you suspect you have it, make the cocktail and take a sip. It it actually tastes good to you, you most likely have adrenal fatigue. If it tastes very salty and disgusting, then something else is likely causing your fatigue. Obviously I’m not a doctor, but this is just an at home test that you can try yourself. If you think your suspicion may be correct, contact your doctor and request the spit test to have it confirmed.
Replace and Restore
I usually drink the adrenal cocktail right away when I wake up, as that is when it will help balance the adrenals and give more energy. I few minutes later, I already feel a little better, as if I have just taken a nap. I feel more rested and like I have more energy. Depending on how bad your adrenal fatigue is, you can drink this cocktail up to three times per day. Since I may not know when I’ll have an episode, I usually carry packets of salt with me when I’m out and about and then buy some juice and mix it in. For me, it a very efficient way to balance my adrenals and restore energy. The effects usually last a couple of hours, so it allows me to continue going about my day.
Another supplement that I take to help balance my adrenals is called Ashwaganda. Initially, I didn’t think it was helping, but took it because my nurse practitioner advised me too, but when I stopped taking it for a couple of months, I actually noticed a big difference. I also take B supplements, specifically, B6 and B12, because they help with your adrenals and provide energy. For me personally, I also take supplements to help balance my thyroid antibodies, as they are very high as a result of my Hashimoto’s. This supplement is called Tythrophen PMG. Using this helped decrease my thyroid antibodies, which calmed my body down and made my adrenals not have to work as hard anymore. This combination really helps me recover from episodes of adrenal fatigue.
The final tip I have was also recommended by my nurse practitioner. Before I go to sleep every night, I take 150 mg of magnesium. It helps with sleep as well as helps regenerate your muscles, which also benefits my fibromyalgia. It can also help with migraines, so when I am experiencing a migraine, I will actually increase my dose.
Finding Balance
Through the years, I have learned to recognize when I’m having an episode of adrenal fatigue. When I went to the supermarket this morning and bought the bag of chips again intending to eat it for breakfast, I was able to stop myself. I told myself the adrenal cocktail will be better as that will actually help me rather than just trying to fulfill a craving. I’ve learned that intense cravings like this are often because your body is trying to fulfill a need for something missing, in my case, salt and potassium due to adrenal fatigue. When something doesn’t feel right in your body, there is usually a reason. Sometimes it’s necessary to do some detective work to find the cause and give your body what it needs to function at its best capacity.
When you’re living with chronic illnesses, some days you’ll find that it’s just too difficult to get up and go to what most people would consider a traditional job. Recently, I had a very trying flare. I would be up until 3 AM and then somehow need to be able to function at 6:30 to get my daughter ready for school. It was all just too stressful and too much for my body and mind to handle. This would happen too often, and unfortunately, my employers would not understand what living with chronic illness is like. Time after time, this pattern would cause me to lose my job.
That’s why about seven years ago I started marketing online. I did different things. I did affiliate marketing, where you will promote someone else’s product for a commission. I did advertising and had an advertising company where I helped small businesses advertise online. About 4 years ago is when I started with the Unchargeables community and began making the T-shirts and other products. I really LOVE this work, but unfortunately, it doesn’t pay my bills completely, so I’ve had to come up with other sources of income.
Survival Mode
Chronic illness has a way of turning your entire world upside down. It can often render people unable to do things they once were and force us to make very difficult choices. For many of us, it becomes impossible to continue to hold a full-time job, if we are able to work at all. This can greatly add to the day to day stress we feel in the overall struggle to survive. For many of us, not working at all is simply not an option, particularly as we endure the long and painstaking process of applying for disability benefits, which can often lead to rejection and reapplying. The process can take years. So what can someone with chronic illnesses do in the meantime to survive?
Time for a New Plan
Working from home is optimal for people with chronic illnesses who still need to work as it often can provide for a flexible schedule and work environment and eliminates an often long and stressful commute. As the founder of the Unchargeables, my main source of income come from the associated shop. Obviously, this is not an option for most people, but you can take the concept and apply it to your own skills. If you’re crafty, you can create a product or craft and open up your own shop on venues like Etsy or Amazon. A big help for me in my business is Clickfunnel, a software which helps structure and manage online businesses. This would allow you to use your skills at your own pace and bring in some income.
Harness Your Skills
Another source of income that I’ve come to rely on is that I’m a freelance translator. I have started doing this in the past year to help supplement my income. It allows me to work from home and at my own pace. I have also taken consultation jobs using this skill. Whether it’s translation or something else, find a skill you possess and offer you services as a consultant. Perhaps you had to leave a full-time job due to your illness. Find a way to harness the skills you used and offer them for consultation. For example, if you were a teacher, tutor or write lesson plans. If you worked with computers, offer technical support. Almost any career has a skill that you can offer to provide consultation for if you break it down into its elements.
Sell Yourself!
When you’re chronically ill, you’ll find much of your life is spent in survival mode. It becomes so important to minimize physical, mental, and emotional stress, which are inherent with many traditional jobs. Just as you devise creative strategies for things like self-care and completing daily tasks, it becomes necessary to be creative to earn an income. Sell yourself! You are a valuable commodity with a lot to offer, even if it’s not how you originally planned.
It’s “just a headache”, right? How could something that millions and millions of people get every day have such a huge impact on my daily life and ability to function? Well, it’s not “just a headache”. It’s a migraine and it has the ability to turn my world upside down and make it nearly impossible to do even simple everyday tasks. When I have a migraine, it completely stops me in my tracks.
Through the Tunnel, I Saw the Light
I started getting migraines about ten years ago, although at the time, I had no idea that was what I was experiencing. I was still working a corporate job at the time and started having tunnel vision seemingly out of nowhere as I was working at my computer. I could see things in the middle or right in front of my face, but the surrounding areas were dark. I must not have looked right either, as my coworker asked me if I was okay. I literally thought I was going blind.
My boss sent me to the doctor to try and determine what was happening. I explained what I was feeling and the visual disturbance I experienced to the doctor, and was told I was experiencing tunnel vision. The doctor explained to my that this can be a common occurrence prior to a migraine. This was surprising to me as I had never had a migraine before. Sure enough, a few days later, I got my first migraine.
Identifying My Triggers
When I first started getting migraines, they were no where near as severe and debilitating as they are now. Through the years, I have been trying to figure out my triggers, or what may be the cause of my migraines, but have been generally unsuccessful. Common triggers can be anything from smells to foods to sounds, stress, and even medications. I knew if I figured out what was causing my migraines, I might be able to prevent future attacks.
About four years ago, I was able to determine that eggs are a trigger for me. I completely eliminated eggs from my diet and was successful in avoiding having a migraine for about a year and a half. I was so excited to finally be free of the pain and other symptoms that would take over my life for days at a time. Much to my chagrin however, my migraines returned earlier this year.
The Flare of Flares!
I had travelled abroad earlier this year to facilitate Unchargeables Meet-Ups. The stress of traveling triggered a flare of my autoimmune conditions and, I believe, also triggered the return of my migraines. That was about five months ago and my body is still trying to completely recover. Stress can exacerbate many chronic health issues. Although I’m not currently experiencing acute active stress, as I did when I was stranded, I have chronic stress in my life, which definitely impacts my overall health.
I am currently experiencing my second major migraine flare of the year. My last flare lasted about nine days. Hopefully, this one won’t last quite as long. This is the second time this year that I have a migraine.
My Migraine’s Split Personality
I’ve noticed my body had two ways it tends to cope with migraine flares. The first way is to just sleep it off. I’ll be constantly exhausted and basically sleep until it’s over. I actually prefer that. While I’m obviously not productive while I’m sleeping, that’s the worst of it. When I wake up, the migraine is gone.
The other way my body responds is to do the exact opposite. Unfortunately, that’s how my body is responding to my current migraine. I can not sleep and I’m exhausted. I also can not really do anything else. I just have to lay in a dark and quiet room. I am unable to look at a screen (so no computer or TV), and cannot even talk most of the time. At most, I may have short periods of time when I can tolerate a phone call or talk to my daughter or boyfriend, but I just need to have silence most of the day. I can’t even walk my dog. It’s pure misery!
During these migraines, I’m also extremely sensitive to outside stimuli. Lights, sounds, and smells can all make my symptoms worse and increase the duration of a migraine attack. I am very nauseated. I have to wear sunglasses inside because even the light from a lamp is too much for my sensitive eyes right now. I cannot even tolerate a shower because just the water hitting my skull aggravates my migraine symptoms. My head is pounding, I’m nauseated, and I have a ringing in my ears. There is nothing I can do at this point but just lay in bed and wait for the migraine to pass.
Coping Strategies
If you’ve ever experienced a migraine, you know how debilitating it can be. I’m sure you’d agree with me that you would do just about anything to make it go away, or better yet, to avoid getting one altogether. I do not take any medications for my migraines, as I have not found any that actually work for me. So what do I do when I get a migraine or feel one coming on? Here are some tips I’ve learned through the years to help when I migraine strikes.
First, it’s very important to stay hydrated. This may help prevent a migraine as well as alleviate some symptoms. The best thing to drink is water, but some people report caffeine can help lessen their symptoms. Severe dehydration can actually cause the brain to pull away from the skull, thereby causing a headache. Dehydration headaches can occur at any time, but are especially common during the summer or in warmer climates, such as the case where I live.
I also take extra magnesium when I’m fighting a migraine, but I’m not positive if it actually works. It was recommended to me by a friend, so it has become part of my migraine maintenance routine. I take double the dosage when I’m actively experiencing a migraine. One study, however, actually found that regular intake of magnesium reduced the frequency of migraine attacks by 41.6 percent. Other research has shown that taking daily magnesium supplements can be effective at preventing menstrual-related migraines. Magnesium oxide is most frequently used to prevent migraines.
Be Kind to Yourself
My next self-care tip is to rest as much as possible. Your body needs rest to recover from this attack on the body. Migraines are exhausting! Like I said earlier, during some of my migraines, all I can really do is sleep, while during the other, my symptoms will not allow me to sleep. Even when I cannot sleep, it is important to rest. I try to do this by unplugging and eliminating external stimuli that may further aggravate migraine symptoms. I avoid light and sounds and just lock myself in my bedroom with the curtains closed all day.
Another thing I’ve found helpful in dealing with migraine symptoms is massaging peppermint oil on my temples and in the back of my neck. Peppermint oil contains menthol, which can help muscles relax and ease pain. This is usually most effective for me either when the migraine first starts or when it is about to end. If my migraine is severe, the relief is very short-lived, only about ten minutes, but I will take any relief I can get.
With my most recent migraine, I decided to try something new. I have been experiencing a stiff neck, which I don’t actually get with every migraine. I have been using a CBD-infused muscle rub. I have been massaging it from about the base of my skull though my upper back and have actually noticed some relief. Some people also receive relief from cold compresses on their head, neck, or back, but I personally have been hesitant to try this because of my Cold Urticaria, or allergy to cold.
It’s Not “Just a Headache”
Managing migraines, as with any chronic condition, can be very challenging. I hope you can relate to my experiences and find my coping strategies helpful. Like any condition, people may respond differently to stimuli and treatments. It is important to try to identify your triggers and have treatment protocol in place for when a migraine strikes. Migraines are not “just a headache” and treatments can be just as complex and multilayered as the condition itself. Hopefully, I have helped you identify some strategies that may be useful to you in your quest for relief.
When you live with chronic illnesses, sometimes your body can react differently than the average person’s would under normal circumstances. This can not only be confusing to you, but also to the doctors or other medical staff you may encounter when trying to seek treatment and can effect the care you receive. I had an experience with this when I needed to have my tonsils removed.
I had my tonsils removed when I was 23. They had gotten infected and I went to the emergency room for care. At the time, I couldn’t open my mouth because the infection had gotten so bad. The doctor on call tried to force open my mouth and this caused so much pain that I literally passed out. However, he told my mom that I just fainted because I was scared.
Grave’s Strikes Again
Year prior to this, when I was about 19 years old, I was diagnosed with Graves’s Disease after years of experiencing a lot of vague symptoms that no one had been able to figure out before. When I was diagnosed with Graves’, I had to take a lot of medications, 13 pills, to treat not only the disease itself and it’s effect on the thyroid, but also to treat cardiac symptoms and to help with the side-effects of all the other medicines.
After about a year and a half in the medications, my Graves’ Disease went into remission, but my overall health had suffered from all the medication I had taken during that time. Sure enough, I had gotten very sick. I had double pneumonia that lasted about three months. It took a lot of antibiotics, but I eventually recovered. At this point, I decided that I really just needed a break, so I decided to take a semester off from University and went to Aruba for five months to just relax and recharge.
A Break From One Problem is the Start of Another
While in Aruba, I started getting horrible throat infections. My throat would be bright red with white spots and extremely painful. This was accompanied by a very high fever of 40* C (104* F) or higher. I had been to the hospital multiple times for it, about four times in a five month span, and each time I would be prescribed antibiotics, but it kept coming back. Part of the problem may have been that Aruba, while beautiful, is a very dusty island, and when you breathe in the dust in the air, it can irritate your lungs and tonsils, making it difficult for throat infections like I had to resolve.
After 5 months, I went back to Holland because my semester was starting at University. I just got my first apartment in Amsterdam and I wanted to get back. Over the next year and a half, I was still constantly getting these throat infections and had been on antibiotics at least seven times. The antibiotics would work, but not well enough, and my tonsils kept getting infected.
Operation Time
At some point, the doctor told me that he recommended having my tonsils removed. As I was still young, he said it would be a fairly easy operation, so considering all the problems I had been having, he thought I shouldn’t wait until I was older, as it’s a much harder procedure on older people. Apparently, they almost peel out on a young person, but with older people, they are attached more to the body and therefore the procedure requires a lot more cutting. I reluctantly agreed, as I was having these severe throat infections almost monthly by then, and decided to go ahead with the surgery.
The day of the surgery arrived. I am very sensitive to all medications, so I advised the doctors not to use too much anesthesia. I knew just a little bit will do the trick and told them they should start with a very low dose. Prior to the procedure, I had a meeting with the anesthesiologist. Thankfully, he really listened to me, which made me happy and more comfortable about the procedure. Sure enough, when the time came, they really did give me a very low dose of anesthesia. I know because I can remember them talking during the operation. I didn’t feel anything. I wasn’t scared. I just felt a really weird sensation like I was sleeping, but I knew I was awake. I could hear the people around me, but I could not move or wake up or do anything. It’s a really strange sensation.
I woke up after the surgery. Everything went well, but it took me a long time to recover. It took me about eight hours to wake up after surgery, whereas I was told that most people wake up after only four five hours. I was told that after I wake up, if I could eat some ice cream and go to the bathroom on my own, I would be able to go home to recover. But I just couldn’t wake up. I couldn’t eat the ice cream. It was about ten hours after the surgery before I could manage to do what they requested and was discharged to go home with my mom to recover.
I went home, but the pain was still so bad that I could hardly tolerate eating the ice cream or even drinking. This progressed, and after three days, I was in so much pain that I couldn’t even open my jaw anymore. So after three days I was in so much pain and I couldn’t really open my jaw anymore. I think it was a Friday evening, as I usually got sick on Friday evenings for some reason, and I called my mom and told her that I felt like I needed to go to the hospital.
A Rough Recovery
I felt very strange. I was in a lot of pain. I felt like I was floating and hallucinating. Something was very wrong. My mom rushed me to the emergency room and I saw a doctor. I’ve always been kind of jittery and anxious about anything hospital or doctor related, so I only go when I urgently have to. Well I was there and feeling anxious, but I was in a lot of pain and couldn’t really open my mouth, so I knew I needed to be there.
I told the doctor how I was feeling and that I couldn’t really open my mouth when he came to examine me. He didn’t take me seriously and thought I was being dramatic and exaggerating. I opened it as far as I could, but that wasn’t good enough. He told me to “ man up” and open my mouth properly, but when I was unable to do so, he took his hands and forced it open. This caused so much pain that I actually lost consciousness.
I woke up on the floor with a pillow under my head and my mom sitting next to me. There’s no doctor in the room at this point. I asked my mom what just happened. She knew the truth and was furious. Soon, the doctor came back into the room. He blamed the incident on me being scared and having and anxiety attack and then just walked away. I was stunned! I knew I had fainted from the pain and this doctor had the nerve to not listen to me and then blame it on anxiety. Just because I wasn’t screaming and carrying on, it doesn’t mean I’m not in pain. That’s something I wish people understood. When you have chronic illness or chronic pain, you tend to react differently to pain than most “normal” people. You can almost hide it and push through when other people would act like they’re dying.
Yet More Antibiotics
In the end, he gave me another round of antibiotics that I had to drink while my throat was infected and open after surgery. I can still remember the flavor and smell to this day, and if I smelled it again, I wouldn’t be able to take it because it was such a traumatic experience. The pain I had was the worst pain ever! It was even worse than childbirth! Drinking the gross antibiotics twice a day in my open , sore, infected, swollen throat was no easy task. They were a gross orangey flavor and I’d just drink it as quickly as possible while my entire head was wrapped in bandages and packed with ice. It was awful!
The antibiotics did help this time. It took me longer than normal to recover, but in the end, it was successful. To this day, I have never had another throat infection. And have only had sore throats maybe three times and they were nothing compared to the infections and fevers I had previous to the surgery.
Doctors, Please Listen to your Patients
While I must say the surgery was successful, this was just one of many stories of doctors who didn’t believe me or just didn’t take me seriously. Obviously, not all doctors are bad. There a lot of good doctors out there. This doctor probably meant well and really thought I was having a panic attack, but I would like to share this story for all the people living with a chronic illness and issues like these to know that these things happen everywhere. I also hope that some doctors will see this article and realize that what they do is very important. How they react and interact with patients and whether it seems like they believe them can make a huge difference.
I hope you enjoyed my crazy story about when I got my tonsils out. From this experience, I learned how important it is for doctors to listen to patients. It can make a world of difference in the patient’s outcome and, for doctors, can make a difference in their treatment plan and relationship with their patients. It is important to be your own advocate and speak up when something doesn’t seem or feel right. Especially when dealing with chronic illness or pain, what seems “normal” may not be, so we must advocate and educate on our own behalf’s to have the best possible outcome.
Sometimes, it can be a struggle to get a proper diagnosis when something is not right in your body, Today, I’d like to tell you the story about when I was having breathing problems as a teenager. I was misdiagnosed as having anxiety but in reality, I was actually having a much more serious issue. The following is the story of how I was finally diagnosed with a thyroid disorder.
Growing Pains? But I’m not Growing Anymore!
My symptoms started when I was around 14 years old. I was living in Holland at the time and sitting my Dutch class when, out and out of the blue, I got shooting pains in my upper arms and across my chest. These pains were so intense that I got out of my chair in the middle of class. I went to the doctor where they did a lot of tests. They checked my muscles, joints, and blood and nothing showed up so they told me it was probably just growing pains. This didn’t really make sense to me at the time and at my age, but I just listened to the doctor and went on my way.
I’m Calm, Really
Over the next couple of years, my symptoms started to change and still seemed very strange to me. By the time I was 16, I started to constantly experience shortness of breath. I felt like I couldn’t take a deep breath in. Once again, I went to the doctor and they started checking my oxygen levels. My oxygen levels were fine, so they decided it must be all in my head, like I was having anxiety. By the time I was almost 18, the doctor sent me to breathing therapy because he thought I was having panic attacks.
I didn’t feel like I was having panic attacks. To me, it was something that just happened and would subside just as suddenly as it came. I just felt like I couldn’t breathe properly. Around this time, I would also have strange dreams in which I was choking or like I was drowning underwater. After what was probably just a few minutes, I would wake up and take a deep breath. My body just felt like it was under so much stress, but when I would explain this to the doctor, it would be dismissed as anxiety.
Breathe in….Breathe out….
The doctor sent me to therapy to learn breathing exercises to help me cope with this so-called anxiety. I learned to ground myself and to take very controlled breaths in through my nose and out through my mouth and how to do these breathing exercises when I’m in situations when I feel stressed or need to calm down. Funny enough, this helped me about 15 years later when I was pregnant and found myself in a scary situation, but did nothing to help my current health difficulties as these were not, in fact, panic attacks.
By the time I was around 19, I was going from hospital to hospital and having test after test, but no one could figure out what was wrong with me. Each test would come back negative, and that was just about the worst thing someone could tell me. According to them, I was the picture of perfect health. That really upset me because I knew something was wrong. I know it sounds crazy because to most people, a negative test result would be a good thing, but I knew something was wrong with me so it actually made me quite upset.
A Lead in the Right Direction
When I was 19, they did another comprehensive blood test to really try and figure out what was wrong with me. As a result, my doctor discovered that I had something wrong with my thyroid and referred me to the hospital to have an ultrasound to try and figure out what’s really happening. I called the hospital to make an appointment for the test and to see a specialist, but I was told the first appointment wouldn’t be for four months. The lady who was scheduling asked me if it was an emergency, and my doctor didn’t say it was, so I said no, as my doctor didn’t say it was, and waited the four months until it was time for my appointment.
At this time, I was 19, living independently from my family in another city, and working part-time in a butcher shop. When I was at work one day, people started looking at me really strangely and asking me what was wrong with my neck. I looked in the mirror and it looked like I swallowed an inflatable, donut-shaped life preserver! It looked like a cartoon! My neck was swollen really badly, but even though it looked and felt strange, it didn’t hurt at all. My hands started shaking, but at only 19, I still didn’t know that anything was really wrong.
I went to the doctor, but figured I would probably be okay since I’m already on the waiting list to go to the hospital. It didn’t occur to me at the time that I should call the doctor and tell them what my symptoms are. My neck was huge, but at that point, I didn’t even know where my thyroid is or what symptoms to watch out for. Back then, the Internet wasn’t really available like it is now. I did do some research in the library, but still didn’t think it was a big deal, and by this point, my hospital appointment was only three weeks away, so I thought I could wait. By this point, my hands were trembling so badly that it became a game to see if when I ate something like soup, anything would be left on the spoon by the time it reached my mouth.
As Serious as a Heart Attack
The day came that I had my appointment and I was sitting in the waiting room with one of my friends. The doctors kept coming in calling the names of each patient as it was his/her turn to come back. Finally, I was called by a doctor that was old and cranky to say the least. He called out my name and I got up. He has never seen me before and knows nothing about me. He just knows I’ve been referred and he needs to have a look at me. The doctor looked at me and said that he hoped I had been sent there urgently. I’m like, “What?!” He asked how long I had been on the waiting list. I told him I had been waiting four months. He was shocked and said that I need to be seen by cardiology urgently. Once again, I was shocked! I asked, “What? Where are we going?” He said that he needed to make sure my heart would last the day. “WHAT!?!?”
There I am, walking with this doctor, and we’re going past all these elderly people waiting in line. There was a lady who was probably 80 years old sitting with an IV running, and yet I was the urgent one! First, I went to cardiology, where they stuck all these things all over my body to test my heart to make sure I was fine. I’m like, Oh My Gosh! Again, I’m 19, so my friend, who was maybe 21 at the time, and I were laughing and giggling throughout. We would laugh and make jokes to ease the tension, but all the movement was impacting the test, so soon enough, the technician peered through the curtain and told us to stop so he could get an accurate reading of my heart rate. We calmed down so he could check my heart rate. It was not very good, but it was good enough to allow me to go to my consultation.
By this point, I was freaked out. I just wanted to know what was happening to me. I had the consultation, during which he ran bloodwork and tests to make sure I was okay because he was scared that I was going to have a heart attack. Again, I was 19 and had been having these symptoms for three years. I told him about my shortness of breath, that I had to go to breathing therapy, and because of it, I can calm myself down when I get tense, but I still couldn’t breathe normally.
The doctor said that the reason I couldn’t breathe was because my heart was in such distress that I couldn’t get enough oxygen. I just freaked out! I could not believe what he was telling me. Long story short, I had to go into the hospital every four days for a whole bunch of different tests and it turns out that I had Grave’s Disease, which I later found out is an autoimmune disease of the thyroid.
A “Grave” Answer
At the time, I was told I had this condition, Graves Disease, but the doctor really didn’t tell me much about it. He said it should go away on its own in about a year and a half, so we just needed to focus on getting through the next year and a half. Knowing what I know now, I would have questioned this, but at that point, I was still only 19 and didn’t know much about the thyroid. I was told I just needed to take a some pills for my heart and some for my thyroid and additional pills to counteract the effects of those pills, about 13 pills in all. I also had to go into the hospital for tests every four days for the first six months of my treatment.
I had treatment for about a year and a half. My Graves was under control and I thought I was cured, as this is what the doctor told me. I was taken off all the medicine but warned that in about 20 years, I would have the opposite problem: my thyroid would go too slow instead of too fast like it had worked previously.
The doctor explained that with Graves Disease, your thyroid works too fast. Your thyroid is like the motor of your body. When things like your digestion goes too fast or you feel anxious and jittery, or you have a fast heart rate, you’re hyperthyroid. That’s what had caused all of my weird symptoms. The doctor told me I was cured after taking all the medicines.
My Graves Disease was gone, but in about 20 years, my thyroid will to be too slow, or hypothyroid, but that’s about it. He said I would have to take a pill for it for the rest my life, but that’s about it. That didn’t sound so bad, so I just signed the papers and left the hospital. No more tests, no more pills, no more anything. I was finally free to go enjoy my life. I was cured! Or so I thought….
Pregnant! But Something Wasn’t Right…..
Seven years later, I got pregnant. I had a pregnancy from hell. I didn’t know what was going on. I had bad moods all the time. I was so tired that I couldn’t stay awake for more than 3 or 4 hours per day. It was really extreme. They thought I had postpartum depression 6 months after I gave birth to my daughter. Years later, I found out that I actually have Hashimoto’s Disease, which is an autoimmune disease of the thyroid, but now the thyroid goes too slow. The doctors gave me a pill and said to take this pill every morning when I woke up and I’ll be fine. I had to test my thyroid every year.
The numbers looked okay, but I still wasn’t feeling well. Long story short, when I was researching Hashimoto’s, I figured out it’s not just hypothyroidism, or when your thyroid goes too slow, it’s an autoimmune condition. I also figured out that Graves was an autoimmune disease of the thyroid, which I never knew before. Apparently, I had an autoimmune disease of the thyroid, but it was just in remission. I wasn’t cured at all, and the doctor failed to tell me about it because I’m sure that he knew. Since I was 19, he thought he could just keep it light and simple, and just tell me I was cured. You can read more about my pregnancy here.
Always Trust Your Instincts!
They lesson I learned and that I hope to convey to others who are teenagers or young adults is that teenagers can remember. I remember every single thing that this doctor told me. If he would have told me that I had an autoimmune disease of the thyroid, I would have done things differently while I was pregnant. I would have pressed for a test of my thyroid. I would have told them that I had a thyroid issue when I was about 19, but I’m cured. Instead, no one ever tested me. No one looked for anything while I was was pregnant, and I think a lot of my cascading downhill health could have been prevented if I would have been presented with the right information when I was a teenager and having all these problems.
Teenagers know when something is wrong with their body. They’re not just being lazy. They’re not just having panic attacks. They’re not just making it up. If they are really suffering from issues or having symptom for years at a time, it’s real, and you just have to search until you find it. If you have a problem with your health, be your own advocate. Don’t give up. Even when the doctor told me I was having panic attacks, I still didn’t believe it. I complied with the doctors and went to the breathing therapy, but I never ever gave up. It didn’t matter how young I was. It didn’t matter that nobody believed me. I just kept going. I got my diagnosis and in the end, I got my treatment.
When I was 19, I was diagnosed with Graves’ disease, which is an autoimmune condition of the thyroid that causes it to work faster than it should, also known as hyperthyroidism. When I received this diagnosis, I was never told that pregnancy effects the thyroid. I had treatments at the time and eventually the doctors told me that I was cured. Well, eventually I became pregnant and remember these treatments when I was reviewing my medical history with my midwife at me first appointment, which was when I was about 13 weeks along.
I’m Dutch, and in Holland, we tend to use midwives during pregnancy. Most midwives are big believers in home and keeping things as natural as possible. I filled in the forms with all the pertinent information about my parent’s health history as well as my own, and included the information about my previous thyroid issue. They took all of this information and added it to my file along with recent blood tests, which were all normal. However, in Holland, the blood tests do not include anything about the thyroid.
I’m Pregnant…..But Exhausted!
In the first trimester of my pregnancy, I was extremely tired, much more than normal. I could only stay awake for about 3 or 4 hours per day and the rest of the time I would be sleeping. When I told my midwife that, she didn’t think this was unusual. She said that first 3 months of the pregnancy are the most important ones, so I should actually be resting as much as I can. Something still didn’t seem right, and I asked her if it’s normal to only be able stay awake for 3 or 4 hours. That seemed kind of excessive to me. Shes was dismissive of my concerns and just said that everybody’s different, so I should just go with it and I’ll feel better.
Then the nausea started. I was about 10 weeks pregnant when the nausea started. I spoke to my doctor and midwife and was told it will be better when I hit 12 weeks, but sometimes it goes on until about 14 weeks. At 14 weeks, I was so nauseas, I couldn’t eat and I was starting to lose weight, which obviously is not something you want to happen while you’re pregnant. This made them start to take it a little more seriously, and when I was 16 weeks pregnant, they gave me medicine to lower the nausea so I could eat something. That’s medicine helped a little, but the nausea didn’t go away. I didn’t just have morning sickness, I was nauseas all the time, and that lasted until I was 26 weeks pregnant.
By then, obviously, you could see on the outside that I was pregnant and while I was happy to be having a baby, I was not feeling happy. I felt like I had this dark cloud above my head all the time. I was constantly in a very bad mood and I was just very unhappy and I didn’t know why. I was less tired than in the first trimester, but I was still really tired. Everything was hurting me. I kept going to the doctor and would tell him that I understood these are pregnancy symptoms, but this just all feels very excessive. I didn’t know any other moms-to-be that were like this. I wasn’t really depressed, but more like in a bad mood and unhappy about everything. I felt like I wanted to fight about everything and I just didn’t want to do anything but just be laying down. When I was laying down, I felt really bored. I was just really unhappy all the time.
S
Something Doesn’t Feel Right
When I was about 26 weeks pregnant, those negative feelings finally started to fade and I thought that maybe I was finally get to the part where I do feel better. Things were going okay until I was 32 weeks pregnant. I was still working at the time for my job, and we had a dinner with all the coworkers. During dinner, I started getting these sharp pains in my belly, so I started to walk back and forth in the restaurant. All my coworkers were really nervous that I was going to have the baby right then and there. I thought I would walk it off and I’ll be fine. After an hour of walking back and forth in the restaurant, my manager suggested that maybe I should go home. My mom came and picked me up and took me home with her.
The next morning, these sharp pains still weren’t gone. I went back to the midwife and she told me that the baby wants to come out, but I was only 32 weeks long, so it was way too early. Then, she put me on strict bedrest. I was shocked! I was on strict bedrest until 38 weeks. So for the 6 weeks that followed, I was kind of like an incubator. That’s how I felt. During this time, my mood worsened. I was more and more unhappy and I just wanted to have this alien baby out of me because I was done with this.
I must say that this midwife gave very good mental counseling and support, and she’d come to my house and tell me things to calm me down, like that I may feel this way now, but if my baby’s going to be born now, it’ll be premature and and I’ll have all these worries. She said that even though it’s very hard being stuck in bed, that I should understand that I’m doing this for my child and will be fine. She reminded me that this was just temporary and when my child get born at a normal stage, I’ll feel better about it. I listened to her.
The doctor never did any more tests. They never checked anything extra. They just told me it was all pregnancy symptoms. And then the day came that I went into labor. I was excited and eager to go to the hospital, but that’s not how it works in Holland. The midwife comes to your house and she checks how far along you are and she makes a call if you can go to the hospital or not. She told me, nope. I was too far along already and it’s going really fast. I could not go to the hospital and would be having my baby at home. I’m like, WHAT??? I don’t want to have my baby at home!!! I knew I really couldn’t do anything about it though, so I went along with it. I’m like okay, let’s do this. But the baby did not want to come out.
Welcome Baby!
After about an hour of trying to push her out, nothing was happening, and the ambulance was called. I lived in Amsterdam in an apartment on the 4th floor, and if you know houses in Amsterdam a little bit, the stairs are really steep. I had practiced because I knew if I needed to get down these stairs while I’m in labor, I’m practicing these freaking stairs! It was the middle of the night in January 15th when the ambulance arrived, and it was snowing in Holland at the time. The ambulance was there and they told me whenever I didn’t have a contraction, I should go down the steps and into the ambulance. And I was like, now! I can do it now! I ran down the stairs and I reached it in time for the next contraction. Apparently, I went out just in my bare feet just wearing a T-shirt. The paramedics told me to stop pushing. I didn’t even think that was possible!
A
During the whole ambulance ride, I’m in the ambulance with 3 men. Men! Three men telling a woman in labor to stop pushing. That is not happening! It’s like, impossible! Anyway, a long story short, we made it to the hospital. I ended up having a cesarean because, despite trying to get her out for an hour, she did not want to come out. My oxygen was starting to get low. My contractions were basically stopping. I felt much better now, which the paramedics said was apparently a bad sign. They rushed me into the operating room and I had a C-section and my daughter was born.
I was really happy to see her, obviously, after she was born, but my recovery was extremely slow. They kept telling me that if I can get up and go to the bathroom by myself, I could go home. After 4 days, that was still close to impossible. I couldn’t move my body. My body was so exhausted that I just couldn’t move it.
At this time, I didn’t know that I have a whole bunch of autoimmune diseases and I just thought, why am I so tired? Why is my body not moving right? With the help of my then husband and my mom, we managed to get me to the bathroom and get me released from the hospital to go home, but as I told you, I was living on the 4th floor with stairs that are this steep, and now I had to get up these stairs. My mom and my then husband literally took my feet and placed them on the next step and I’d pull myself up. We’d repeat this process until I made it up the stairs. They couldn’t carry me because I had just had a cesarean and everything was hurting. Then I was in my apartment in bed where I was just was for 6 weeks before my daughter was born. She was born at 38 weeks and 2 days and then I was in bed for almost another month. I just could not get out of bed.
Something’s Still Not Right……
Once I was home, the midwife came by and said that I should just do it. She insisted more and more that I should push myself to just get out of bed. She said that my recovery was going too slowly. Once again, I had no tests to try and find out what was wrong with me, just all the regular tests they do after you have a baby and they did with my daughter as well. No one was really concerned about why my recovery was so slow and why my mood was so bad.
In the days that followed, psychologists came to my house to check on me. They would sit next to my bed with the midwife and people from all sorts of agencies. There were so many people coming by because they were checking for postpartum depression, but I was cleared and told I was fine. After about 2 weeks they left me alone. I slowly recovered. My bad mood was less, and I lost all the weight that I gained, which was not a lot since I didn’t gain a lot of weight because I couldn’t really eat. But I lost all of the weight from the pregnancy within 10 days after the cesarean.
Then, I started to have a very poor appetite. I was really tired again, but this was more extreme. I knew new moms are really tired because they wake up during the night to feed the baby and everything, but I was deadly exhausted. I couldn’t move. I couldn’t think. I couldn’t eat. I couldn’t even walk. I started gaining a lot of weight, but I didn’t really eat much. It all seemed very weird to me and I started getting depressed.
I started getting hallucinations. I’d imagine I was standing on top of the stairwell with my daughter and in my mind I saw us tumbling down the stairs. I knew this was not happening. Later, when I felt better and I was able to drive again, I would drive to work. While I was driving and focusing on the road, my mind would show me images of crashes happening and me tumbling over with the car. It was just surreal. It was the weirdest thing! Then, I would look in the mirror and I would not see myself. I saw another person. When I saw pictures of myself with friends and family from before I had the baby, I saw a different person. Only the pictures that were taken when I was feeling like this looked like me. I went to the doctor and described these hallucinations. I said I didn’t know what was going on, but this was all very strange and doesn’t feel like this should be happening to me.
The doctor told me to go to the psychologist. I went there and I felt like she really didn’t take me seriously, so I didn’t want to go to her anymore. I wanted to go to another one. My doctor didn’t agree and was really upset with me. One day, I bumped into him in the bakery and it was just very awkward and I was just very unhappy about it.
Taking Back Control
About 7 years ago, I started doing my own research. I was looking into depression and depression clinics. I found a depression clinic in west Amsterdam that looked like it would be a good fit for me, so went back to the doctor and asked him for a referral so I can try to go there. He came back and reluctantly agreed give me a referral letter. I went there, and that was the best thing that I’ve ever done.
My psychologist was just a girl my age that I could speak to on my level. She believed everything I told her. She was even doing research for me based on all my symptoms. She said that she doubted it’s postpartum depression because was about six months after the baby was born, which is really late. She said if it was postpartum depression, I would have had it right away after she was born. She thought the fatigue I had told her about could be chronic fatigue syndrome, and advised me to look into that. She worked with me based on her diagnosis and told me talk to my doctor about it, and see what you think. I worked with her for about three years every week. While that did help me, it didn’t solve the problem. We worked on positivity exercises, how to make my world a little bit smaller, mindfulness exercises, and how to come back to myself and my core, but something was still off.
At some point, I think about 6 months into my work with her, they did a test, and it turns out that my thyroid completely stopped working. Zero. It did not do anything anymore. That explained my hallucinations, my depression, my gaining weight while I wasn’t eating, and all of these previously unexplained symptoms. They gave me the thyroid medicine, Synthroid. I started taking it and the first 6 months, I started to feel much better and after a year, I was almost back to my old self. I still didn’t really lose the weight, which was kind of weird and my moods were still on and off. I was still exhausted and in a lot of pain, but it was much better than it was before.
Years later, I was actually doing research for the Unchargeables Chronic Illness Community to look more into thyroid issues. Back then, the community was more for people with fibromyalgia because I had fibromyalgia and so that’s what I could support people in. Then I realized, well, I have this thyroid thing as well. I take this pill every morning, but there must be other people with thyroid problems like me. I thought maybe I could support them too by sharing my story and just offering them some support.
It’s a Miracle!
I was doing research about thyroid issues, and I stumbled upon this thing called Hasimoto’s Disease and miracle babies. I was surprised and decided to look more into this. There were these stories of women who were pregnant and had all the same symptoms I had that didn’t experience all the stabbing pains in their stomach, but their babies didn’t make it. Only about 10% of these babies survived and actually were born into the world and those were called miracle babies. I’m like, oh my god! I think my baby’s a miracle baby!
By this time, she was already three or four years old. I started looking at all the symptoms and the treatments and everything. I read about a whole bunch of people who were taking the Synthroid medication, but this was just not enough for them and this was not making them feel any better. There were a lot of people that reported that natural thyroid medication made them feel so much better.
I started looking into that and researching more. I read medical books about the thyroid and about Hashimoto’s and understanding everything better and then I discovered this: Thyrovanz. This saved my life! When I switched from Synthroid to Thyrovanz, I got my life back. I wasn’t so tired anymore. I didn’t have bad moods and mood swings all the time, The fatigue and pain and just not happy about life improved. I could move. I could walk. I felt so much better! Today, my daughter is now a happy 7 ½ year old and we are super-happy together.
The lesson I got from this is even though your doctors may know a lot and they studied for a very long time to become a doctor, do your own research. Be your own advocate and make sure that your medical treatment is correct for you because every body needs something different. Do your own research and try to work with your doctor.
Chronic illness can strike in many unexpected ways. This has been the experience for so many of us. We never know how or when chronic illness will strike. It can often feel like you’re trying to navigate a minefield just to get through each day. This is the story of how I discovered I had one of my chronic illnesses: Cold Urticaria, and why I can never swim again.
Today, I want to tell you about this weird allergy I have and I have had ever since I was a teenager. I’m allergic to cold, and especially to cold water. It’s called Cold Urticaria. I didn’t know this until about two years ago. I knew I had the allergy, but I had no idea that it actually had a name and that other people had it as well.
I knew there was something very wrong, as I would get a strange rash and feel ill every time I was exposed to cold water, but it would take many years before I found out this condition was real and actually had a name. This is a challenge so many of us have faced along our journeys with chronic illnesses.
Here is how I figured out what is wrong with me. When I was younger, we had a little boat that we went to and a little island in Holland. When we would go there, we would go swimming and play in the water. When I was a teenager, I noticed that the longer I would stay in the water, the worse my reaction to the water was. It was very weird.
It’s Raining and I’m Burning!
The first time that it was really bad was when I was 14 years old. I had my boyfriend over on the weekends, and we went on a little sailboat on to the lake. Well, on this particular lake, the weather can get crazy and turn in seconds. We saw a dark cloud come in, so we turned around instantly to try to sail back to the harbor in time, but we didn’t make it.
The storm caught up with us. There was a lot of wind, crazy rain, and we were just drenched. We eventually made it back to the harbor safe and sound, but I was feeling weird. I felt like my whole body was on fire. I felt like I was burning. My mom took me in and she saw this rash all over my body that looked like hives. It felt like it was burning and I was shivering and in shock. My mom thought I was just really cold and needed to warm up. I took a warm shower, but it didn’t really do anything. So then she put me in a lot of blankets and we just waited it out. It took about ½ hour to an hour and my body calmed down and I was fine again. It was just so strange.
After that very extreme episode, I wasn’t able to just jump into the lake and swim anymore. If I were to jump into the lake and stay in for more than 5 minutes, I would get this rash and this reaction and these hives that felt like a sunburn. I didn’t feel it while I was still in the water, only after I got out, so I thought as long as I stayed in the water, I’d be fine.
At first, I didn’t realize it was the water itself causing this strange reaction, but thought maybe it was the beach itself or even the algae in the water. I thought the reaction might be triggered by warming up after I got out of the water. Little did I know that I was literally having an allergic reaction to water. Then I thought, maybe it’s the lake? Maybe it’s the sweet water so I’ll go to the beach and try to go into the sea. No matter how warm it gets outside, the sea water in Holland always remains cold. I noticed I couldn’t do that either. Now I thought if I can’t go in the lake and I can’t go in the sea, maybe I can swim in an outdoor pool since pool water has chemicals in it to help keep it clean. By this point, I still thought I may be allergic to the algae or something else in the water.
I went to the pool and the same thing happened again. By this time, I was about 16 and really wondering what was going on. I’ve tried everything. I cannot swim in lakes. I cannot swim in the sea. I can’t even swim in the outdoor pool, but I can go to the indoor pool and swim and I’m fine there. This made no sense to me.
That winter I was 16. I’m from Amsterdam and we ride our bikes a lot. I was riding my bike and it started to rain. I was in a restaurant and I didn’t have my gloves on and my hands started to burn like the rain was giving my hands an allergic reaction. I started breaking out in hives and it felt like my hands were on fire and extremely sunburned. It’s the worst! I started to make a connection— the rain, the water in the sea, the water in the lake, the water in the outdoor swimming pool…I am allergic to water! Something still didn’t make sense to me. I knew I couldn’t actually be allergic to water since I’m still able to take a warm shower without a reaction. Then something clicked. Maybe it’s just COLD water?
Still Many Unanswered Questions
Still unsure about what was actually causing this rash, I just tried to live with it for about 20 years, basically from 14 to 34. I don’t really think twice about it, I really just don’t go swimming anymore. I’ve tried putting my toe in the water and then my foot. I’d have to take my foot out in about 2 minutes because it starts to prickle and burn. That’s how I’d decide whether or not it was safe for me to go into the water. I’m not going to go in the water.
Something changed when I moved to Aruba when I was 23 years old. I lived in Aruba for about a half year and I was able to go in the water there. I could swim, stay in the ocean for a very long time and I didn’t have any reaction. I thought maybe my weird episode is gone so I can just swim outside again.
This change made me think it was just a transient episode and it was now over and I could return to the water. I soon learned this was not the case. When I was back in Holland and wanted to go outside again into the sea, I had the same reaction. I went on a holiday to the Azores Island, near the middle of the Atlantic Ocean, and got the same reaction there. I thought it would be safe to try swimming again since it had been so long since I’d had the reaction. I once again had the reaction and broke out in hives all over on my holiday.
“I’m Allergic to Cold!”
I finally realized a key difference between the sea in Aruba and the water she swam in at home in Holland: the temperature. I made the connection that the sea in Aruba has a better temperature. It’s not cold so I can go into the water there, but basically cannot go into the water in any other parts of the world. I took it as a given. I never really talked about it because I just really didn’t think about it. It wasn’t something that typically impacted my daily life.
A New Challenge
Recently, my daughter has taken an interest in water and swimming, so I had to face this challenge again. My daughter, who is now 7 years old, started to go swimming. First, she was a little bit afraid of the water. When she really went and and wanted me to come in with her, she was about 5 ½ . She was like, “Mommy, come swim with me.”, and I was like, “No. I cannot go into the water because I’m allergic to the cold water.”, and I realized this is actually really strange. When her friends come over, they’re also like, “is your mom going to swim?”, and I’m kinda like, “No” and having to explain to these 5,6,7 year olds that I’m actually allergic to cold water and I cannot enter the swimming pool or the sea for that matter. I started to realize that this is really weird and maybe I should know more about it. So I started looking online for cold water allergies or something and I stumbled upon Cold Urticaria.
But What’s Really Happening?
Like many of us with chronic illnesses, I have several conditions that are comorbid, and sometimes it can be difficult to distinguish if a symptom is related to one of the pre-existing chronic conditions or if it is a new problem altogether. I thought to myself, “You are allergic to the cold and now so many symptoms from over the years that I thought were from my fibromyalgia or maybe my Hashimoto’s or maybe an undiagnosed issue were all cold urticaria and I just never knew.” Prior to this, I had never researched it and wasn’t diagnosed by a doctor. The rash would come and go, so I didn’t even think about it when I would go to the doctor. That just never occurred to me.
I’m One in a Million!
This can be a particular issue with rare disorders, as I soon found out. After doing my research, I found out Cold Urticaria is actually super rare and only 1 in maybe a million people (or something really rare like that) have it, It’s literally that you’re allergic to cold, so i was just shocked. It was something I lived with for basically my entire life and so I really didn’t think about it too much.
Changes….
Now that I had a better understanding of what these reactions were and what was causing them, I began to make lifestyle changes to avoid this additional health challenge and sought advice from doctors as to what to do if I did have an episode. I just didn’t go swimming. I realized I can’t ride my bike in winter without my gloves. I realized living in a warmer climate would be better for my health, so after living in Holland for several years, I moved to the Canary Islands. At a point, I had these weird lumps on my toes and they hurt and looked like it might be some kind of allergic reaction. I went to the doctor and the doctor told me, “well, why don’t you put your feet in soda water (water with baking soda in it)”. Well, that just made it worse and I couldn’t walk because my toes got so swollen and filled with these bumps. I couldn’t even wear shoes anymore! The reaction seemed to be getting worse, but I still only got it in winter and I had no problems during summer. I had never linked all these weird symptoms with the cold water reaction, but my feet were only getting these weird bumps in winter in Holland. Things were starting to make more sense now. Now I know what the cause is and now that I know what kind of symptoms it has, I can tie all these weird reactions together. And that’s my crazy story about why I can never swim outside and can only swim in a heated pool or in the Caribbean Sea. So I just have to go there really often.
I learned that I should trust my instincts when I feel something is not right within my body. After a lot of research and through trial and error, I learned that Cold Urticaria, or an allergy to cold, actually does exist and discovered that it can be managed with certain lifestyle changes and avoiding conditions that trigger the reaction. As with any condition, other people may react differently to a stimulus, such as cold water, and have varying results with treatments.
Being chronically ill and being a single parent at the same time is very challenging. I have to deal with questions from my daughter asking me, “Mommy, why do you always need to sleep? Mommy when are you getting better?”. I recorded a video on how I explain autoimmunde disease to her.
As well as I’m trying to explain it to her,
it’s really, really hard. The way that I’m explaining it to her is a way that
I’ve read somewhere on the internet and she understands. She’s 5 ½ years old right
now and I’m telling her the superhero story.
My superheroes are confused
“Everybody has superheroes in their body. The superheroes are supposed to fight the bad guys. When you get a bacteria or virus, that’s a bad guy. Your superheroes will fight them, and they win. While the superheroes are fighting, you will feel a little bit sick, like when you have the flu. And when the superheroes win, you’ll feel better again.
My superheroes are a little bit confused because they think there are bad guys in my body, but what is actually happening is that all the superheroes are fighting each other. There may be a bad guy in my body, but the superheroes are not fighting the bad guy. They are all fighting each other, and while they are fighting, I am really tired and I need to sleep. I feel like I am sick, like when I have the flu. And because they’re fighting each other, they’re never going to win and, that´s why I’m tired all of the time.”
This is why mommy is always tired
I am explaining it to her this way hoping that
she understands. She does ask me the question, “Well, are my superheroes
confused?,” and I’m like, “No, you are a healthy young girl. Your superheroes
are fine. If you get the flu, your superheroes fight the bad guys, and then you
feel better again.”
Yeah, I hope that my way of explaining my autoimmune diseases to my daughter will help you. I did not think of this myself. I read it somewhere. I can’t remember where on the Internet, but I thought you know, that’s a very nice story to be able to tell where they can kinda form an image in their head of what is going on in your body.
I am explaining it to her this way hoping that
she understands. She does ask me the question, “Well, are my superheroes
confused?,” and I’m like, “No, you are a healthy young girl. Your superheroes
are fine. If you get the flu, your superheroes fight the bad guys until they
win, and then you feel better again.”
A helpful cartoon
What I have also done is shown her a video explaining all this. There used to be like a TV show in the ‘80s, I’m from the ‘80s, so I’ve actually watched that about the inside of your body, how the inside of your body works. This show can be found on YouTube and it’s called, “Once Upon a Time Live.” And there’s one about the immune system and I think it’s like a 10 minute show that’s an animation of how the inside of your body works. So I have showed her the episode of “Once Upon a Time Live” about the immune system and then I’ve told her the story about the superheroes and the bad guys.
I think she really does understand it for as
far as all of us can understand autoimmune diseases. I hope my story helps you with how you explain this
to your children. I would really like to hear if you have other good
suggestions. My daughter was 5 ½ when I explained this to her, so maybe for
other age ranges you would have other ways of explaining. If you have other
good explanations for your kids, please share them in the comments.
Having
lived with Fibromyalgia ever since I was 14 has given me a lot of
experience dealing with flares. The most recent one has been going on
for months now. When I was in the beginning of this flare I recorded
the video.
Little
bit of back story: I’ve been traveling in the US for two weeks and
got a major flare on the day before I was supposed to go back home.
It was so bad that I had to stay in the hotel until I felt better.
This video has been recorded after being stuck in the hotel room for
over a week with my major flare.
I
want to explain to you what a fibro flare is and what it feels like.
At the moment of recording the video I had been in a flare for over a
week. I will explain my symptoms in detail, but first I want to
explain to you what a flare is.
Whichever chronic illness you have, it can be Fibromyalgia, Hashimoto’s, Arthritis, Lupus, Msm, or any other chronic illness. A flare means that all of your symptoms are increased , they are more extreme then they normally are. All of your symptoms act up at the same time and make you feel very bad. That is what we refer to that as a flare.
I
want to explain to you what I feel when I have a fibro flare, a
fibromyalgia flare up of my symptoms. Now I have to be honest, I have
no idea if this current flare is due to my fibromyalgia due to my
Hashimoto’s, due to all of my other autoimmune diseases or due to
some sort of unknown cause. It can also be changes in the weather or
that I’ve just done too much. I know for a fact that I’ve done too
much lately. But even though I stopped to rest, my flare seems to be
getting worse and I don’t know why.
What
do I experience when I have a flare?
Right
now my hip is really inflamed, it’s hurting and it’s been like that
for a week. The pain is kinda traveling from my hip into my lower
back and up into the back of my shoulder blades. It feels like my hip
is on fire and then there’s also a nerve stuck. The stuck nerve just
feels like a stabbing pain.
I’m extremely tired, which could be because of the pain, it could be the flare, it could be the fact that I’m in a hotel room and not in my house. But at home I am this tired as well when I get a flare. It’s not very visible right now, because at the moment of recording it’s afternoon and I’m doing okay. But when I wake up my eyes are super puffy and swollen and I have blue bags under my eyes.
Right
now I am also experiencing a ringing in my ears, I’ve had it for four
days. It’s super annoying, I have no clue what I can do about it so I
just ignore it. But I know it’s not normal to have a non stop ringing
in my ears.
I
don’t have a throat ache or throat infection but my throat feels raw,
annoying, warm and swollen. I think my lymph nodes are swollen. My
lymph nodes usually swell up when I’m in a flare.
The
other things that I experience, yes there’s more the list goes on, is
a tension head ache. But it’s not really a head ache because my head
doesn’t really hurt, it’s like a pressure in my head. It could be due
to the weather, because where I am right now it’s raining and it’s
very humid and cold. That really affects me, My eyes get more puffy
and my fingers will swell up as well.
This
irritation in my head is like a pressure which feels like there’s a
head ache coming, but I’ve had this for four days now as well. I
don’t really know what to do about that.
So
basically those are my symptoms when I am in a flare. I could have
constipation, diarrhea, anything going wrong my my GI track. It
varies from time to time. So now my hip is really inflamed, which
actually doesn’t happen often. For me it’s usually either in between
my shoulder blades or in my neck on the right side. Now it’s my left
hip. It could be nausea, I’m not nauseous right now, most of the
times I am nauseous.
My
common flare symptoms:
Fatigue
Nausea
Ringing in ears
Constipation/Diarrhea
Stabbing pain
Burning pain
Head ache / pressure in head
Brain Fog / not being able to concentrate
Swelling around eyes and in fingers.
What
do I do when I’m in a flare?
I
kinda just lay down and try to work through it. Like when you have
the flu and you have to just wait until you feel better. That’s the
way it works with me when I’m in a flare. But a flare can take days,
weeks and sometimes even months. I don’t want to stay in bed for
months, so what I’ll do is just rest a lot, but also try to get up
and move around a couple times per day.
I
make sure that I take all of my supplements, especially magnesium
when I’m in a flare when my neck hurts or my hip is inflamed. The
magnesium helps lower the inflammation. I use essential oils and
Homeopathic anti inflammatory medication as well. Against the head
ache I take white willow drops.
That’s
basically what it feels like when I’m in a flare and what I do about
it. I can’t really do a lot about it but just wait for it to pass,
because it always passes. I try to help my body as much as I can.
When I’m in a flare I don’t have an appetite, so for me it’s very
hard to keep eating. But I make sure that I eat twice, three times
per day. Because I notice that when I don’t eat, I feel worse.
Try
to stay positive!
The
last one is trying to stay positive. That is the hardest one to do
though, it’s so hard to stay positive when you feel so bad. For me at
the moment of recording it’s been a week, I’m stuck abroad, I’m not
at home, I’m in a hotel. I’ve been traveling, I overdid it and my
body told me, yeah that’s it! A day before I was supposed to go home.
It’s
hard to stay positive by myself in a hotel room, but I try. I focus
on the good things, that I really enjoyed the trip and my body just
needs rest to recover and hopefully I can go home soon.
UPDATE: After three and a half weeks in the hotel room I could fly back to Europe. Where I stayed another three and a half weeks with my mom. Two momnths after leaving my house, I finally returned home. Where I continue to recover.
Whichever
flare you are in of have been in, just try to relax your body,
support it with natural supplements and essential oils. Make sure you
keep eating and stay positive. Those are my tips!
What
does your flare feel like? What do you do to get through it?
Being chronically ill, it’s hard to keep up with “normal” life, “normal” jobs and the “normal” pace of life. I wasn’t fitting into “normal” society, something needed to change. And it did. Not only for myself, but for hundreds of thousands of others as well. And this is how it started…
Trying to make ends meet
The Unchargeables community started as just one shirt. I wanted to sell shirts online to provide for myself and my daughter, because I kept getting fired from my regular jobs for being sick too often.
For weeks I tried making shirt designs about various topics, moms, cats, dogs, teachers, and so on. None of them sold though. I got frustrated and reached out to a marketing friend who I knew was already selling shirts successfully. I asked for his help. In return he asked me: so what are you good at? What do you do all the time? What do you already know a lot about? The only answer I had for that question was “living with my invisible illness”
I had just moved countries with my daughter and had no support system at all. I started making some friends, in the three months that I had been in the new country. Since nobody can see on the outside what is wrong with me at this moment in time, I had to tell people that I am chronically ill from the moment I met them. Just in case bad times would strike again. I did this to protect myself and forewarn them. At this moment in time I still had a lot of unaccounted for symptoms, mystery symptoms that I really didn’t know what to do with.
And then there was the shirt….
Back to my marketing friend. I answered him: I know a lot about Fibromyalgia and living with invisible illness and started laughing. But I can’t make a shirt about that! “Why not?” He replied. Let’s search for some images and memes online and see what we can come up with. Within an hour we came up with what is now known as the first The Unchargeables signature design ever.
I made a Facebook post and advertised it to people that might be interested in it. And it worked! I was happy it sold, but something else happened too. Something I didn’t expect. The post got thousands of comments and in these comments I found a lot of people that needed support. When I started replying to them, they gave me support in return too! I didn’t even realize I needed it at that time. That’s when The Unchargeables community was officially born.
I turned the Facebook page into a support community page. After six months we had 19,000 members and I couldn’t handle supporting this many people by myself any more. Something needed to change, I was burning out.
The end is near!
In telling the community that I wasn’t able to support them as much any more, people started offering to volunteer to help out. From there it grew from just me running a Facebook page to a team of volunteers running the page, opening a closed support group and opening our very own shop.
At first I picked the most affordable vendor for our products, but soon found out that was not the best choice. It’s kinda like the saying you get what you pay for. The feedback I got from the initial customers was not pretty. The actual shirts were fine for healthy people. Chronically ill people have specific needs though that most healthy people don’t. For example the fabric was too stiff and uncomfortable on their sensitive skin.
They were asking for bigger sizes, more style options, super soft fabric and all of that was missing.
I knew I needed to give the community what was absent, because nobody else was doing it yet.
In the next months I was searching and searching for the perfect vendor that catered to our communities needs. But I didn’t even know where to look! How would I ever be able to find a vendor that provides all of this?
I looked for examples to model after, but nobody was doing this yet. I had to figure it out all by myself. I asked around a lot, but all the advice I got from fellow marketeers was useless. Because they didn’t understand our specific needs.
Every day I got up and kept searching. I sat behind my computer until my body ached so much that I couldn’t take it any more. I had to lay down again. But even then I kept going from my bed. I knew I would make it happen but didn’t know how yet.
I needed to step away, because I was draining myself completely.
One day I was talking to a friend that I hadn’t spoken to in a year. He asked me what I was up to these days. And I told him about my shop and how I wasn’t happy with my current vendor. Immediately he suggested that I use this amazing vendor and he could hook me up. OMG!
And that’s when everything changed.
This new vendor could offer me everything I needed and then some. I realized I could offer so much more than just shirts. Because in talking to community members and sharing my story I was pointed in the right direction to figuring out what was wrong with me. I had all these symptoms that I couldn’t place nor did I know what to do with. People that I didn’t even know started telling me that they thought my symptoms sounded like something they had.
My miracle baby
A community member with Hasimoto’s pointed me to a website about Hashimoto disease. I went there and found an article about Miracle babies. I read it and recognised my pregnancy completely, the bad moods, the negative attitude, the utter exhaustion and how I felt like my body was trying to get rid of the baby before it was time. The last two months of my pregnancy I was on complete bed rest on doctor’s orders. They did not know what was causing any of my discomforts and assured me everything would be fine. I didn’t really believe them, but they are doctors so I took their word for it.
Back to the website, when I read about the Miracle Baby stories. I knew in that moment, this was what was causing my unexplained symptoms. I took my suspicions to another specialist and found out that I indeed had Hashimoto’s disease. They gave me the correct treatment plan, now I finally knew what I could do to help myself feel better.
Because of this experience I didn’t only want to sell shirts any more. I wanted to make The Unchargeables into a brand. I wanted to create a brand where people like me could find clothes that fit comfortably. I wanted it to represent the life I live with, on a daily basis and raise awareness, while still being positive, funny and have a strong message. I wanted to make stylish awareness apparel that you can wear proudly and represents the fight against chronic illness. Part of my purpose is knowing that I am creating not only just a community, but lifestyle wear in which people can show on the outside how they feel inside while at the same time being super comfy.
You are not alone!
The Unchargeables community grew from a t-shirt. Our community grew into a brand. And now being a Chargie is a “proud” lifestyle chronic illness fighters can identify with and know they are among others who truly understand their battle while showing the world their strength.
I developed all the different aspects of The Unchargeables brand because I want people to have a safe place to share their stories and symptoms with each other. Not simply just to remind them they’re not alone, but so that they may share in other people’s experiences and stories to help point them in the right direction so they can advocate for themselves and seek the proper care they need.
So they don’t have to be like me searching for years to be pointed into the right direction and see the correct doctor. I knew there was more going on with me then I initially thought. My mystery symptoms suddenly made sense to me and I knew where to go from now on.
I could have never guessed in my wildest dreams that my hours of research to create a shirt would grow into providing more than just a service, to so many of my fellow chronic illness fighters. I am so grateful for the chance to share with chronic illness warriors all over the world that they are never alone, and never will be. I love being a Chargie.
