Just Natalie Archives - Page 2 of 2

February 14, 2019February 20, 2019

I Can Never Swim Again – Cold Allergy Exists!

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.

How Natalie learned she has an allergy to cold (Cold Urticaria) and has adapted her life to be able to cope with it better.

Woman sitting on a cold,rocky beach wearing a sweater.

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.

Girl jumping into a lake.

Learning about Cold Urticaria, it's causes, and how to prevent future attacks.

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.

Beach Heart

Learning about living with an allergy to cold and cold water.

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.

Serene beach scene with pink sand and sunny sky

How Natalie learned she has an allergy to cold (Cold Urticaria) and has adapted her life to be able to cope with it better.

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.

January 30, 2019February 20, 2019

How I explain autoimmune disease to my 5-year old daughter

Miracle baby, Hashimoto's, Synthroid, Thyrovanz, mood swings, weight fluctuations

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.

explaining autoimmune disease to my 5-year old daughter

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.

January 25, 2019February 20, 2019

How I feel when I have a Fibromyalgia Flare Up

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?

February 4, 2018February 20, 2019

What a miracle baby and a shirt have in common – The Story Behind The Unchargeables.

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.

Natalie, Founder The Unchargeables

November 28, 2017February 20, 2019

Loneliness in chronic illness

It is a thing that is with you all the time and never leaves. This nagging thing, never leaving you alone. Sometimes it’s lurking in the shadows and sometimes it’s loud and right in your face.

But at all times it’s lonely.

It’s lonely when you get invited to an event and you can’t go. It is lonely when you hear about an event and realise you have not been invited, probably because you always say no. It’s lonely when people insinuate that you are lazy, or that you should be trying harder. It’s lonely when you have tried a hundred different things to feel better but none of them seem to work.

I personally have a group of loving and supporting friends and family They cheer me on, they try to understand me, they want to help me. But they can’t.

However hard they might try, this battle is just for me. A battle with my body, a battle with my mind. A battle with the world around me.

I am tired of being tired all the time. I have forgotten what feeling good feels like. I often want to give up, but somehow I keep facing every day. I keep trying to find ways to feel better. I keep trying to still lead a fulfilling life. I keep trying to be a good mom and give my daughter all she needs.

I am doing quite a good job at it too. But then there’s the loneliness.

It’s always there, waiting. And out of the blue it strikes!

Don’t ask me why, I don’t understand it myself. So how will I explain to others?

I am disappointed with my body, I am disappointed with the lack of energy, I am disappointed I can not be more active and do more things with my daughter, I am disappointed I can’t keep my house clean and cook food every day. I am disappointed I can’t go out and do “fun” things, like go to the movies or go to a concert.

At the same time I am proud of all the things I have achieved, al the things I CAN still do. I feel loved by all the friends and family around me, who love and support me.

But in the end, I still feel lonely.

The only thing that helps me deal with the loneliness is talking to fellow chronic illness fighters. People who live like me. People who feel the same every day. People who don’t need any explanation from me, because they get it.

I can reach them through my mobile or through my laptop. I don’t even have to leave my bed. They are up at weird hours like me, and there is always someone to talk to. They don’t get upset if you fall asleep in the middle of a chat conversation. And they only need half an explanation.

They are my fellow warriors. They are my support system. They are my sanity. They make me feel just a little bit less alone in this battle.

To join this family click here.

April 5, 2016February 20, 2019

Diagnosis: It is all in your head

For as long as I can remember there were little things wrong with me. I got the flu at least 6 times per year. My colds lasted from November until March every single year. I grew up with sharp stabbing pains in various parts of my body, they called it growing pains.

Growing pains

I remember clearly I was 14 years old and sat in class. All of a sudden I got such sharp stabbing pains in my upper arms that I fell off my chair. For the next years tests followed, but there was never anything found. The pain in my muscles was untracable.

The pains could not be classified as growing pains anymore, but since they were untracable it must probably be in my head. Teens have to carry around heavy backpacks filled with books all day. I was probably experiencing muscle aches and was overreacting…

No air

From the time I ws 16 I started having dreams where I was underwater and could not breathe. I felt myself slowly choking until I finally woke up and was able to get a big gush off fresh air into my lungs.

During most the day I was short of breath even though I was not moving. I always felt warm even in winter. When everybody was wearing warm sweaters I was walking around in my tank top.

I went to the doctor several times during the following year. In the end the doctor decided that it was all in my head. I was having anxiety attacks. I was very surprised because I had no feelings of anxiety. I just felt like I could not breathe. All the time…

I was sent to breathing therapy. I got one-on-one coaching on how to breathe, ground myself and relax my mind. I was told to breathe in a bag when I felt like I did not get enough air. Which was a strange suggestion since I felt I could not get enough air all the time. After a year of breathing therapy they decided I was cured. Although I could still not breathe properly…

It is all in your head

At this time I was so used to not being able to breathe in deeply that I hardly noticed anymore. I have been having the drowning dreams and shortness of breath for almost three years now.

When I was 19 years old I went on a holiday to Spain. My breathing started to get worse. I remember sitting on a bus and feeling like the bus was closing in on me. I could not catch my breath! During the day it slowly got worse untill I decided I needed a doctor.

The doctor came to the hotel room and checked me out. He told me all would be fine just take this pill. Turns out he gave me Valium. Because he decided my breathing issues were all in my head. Yet again…

Well, the Valium knocked me out for 2 days. I felt like a drugged up patient in a mental institution. You know the ones you see in movies that are not able to respond, just sit and drool. That was me. I could notice the world around me, but I could not respond to any of it. When I moved it went super slow motion, my muscles did not want to respond the way I wanted them to. I could still not breathe properly.

It’s not in my head?

Upon coming home I decided to take my symptoms to a doctor yet again. By this time I have seen at least 8 different doctors with the same symptoms. This doctor decided to just give me the biggest blood test possible.

Test results came back and it turns out everything looked fine but my thyroid was going a little too fast. Since I was so young, the doctor told me to see a specialist. I called the hospital and asked for an appointment. They asked me if it was urgent. I did not know actually, so I told her how the talk with my doctor went and they decided it was not urgent. I had to wait 4 months for my appointment.

Weird symptom summer

During the summer that I waited for my appointment with the thyroid specialist I started to experience very strange symptoms. The shortness of breath was always there and I was still always very hot. But I also started shaking. Eating soup was not possible, the soup would not stay in the spoon all the way to my mouth. Being 19 I laughed away my problems and patiently waited for my appointment.

One day I was working and my co-worker started laughing and told me I looked like a cartoon. I looked in the mirror and saw that she was right. I looked like a just swallowed a beach ball and it was stuck in my throat sideways. It didn’t hurt and by the end of the day the swelling reduced, so I just waited some more for my appointment.

The specialist

Finally the day of the specialist appointment came. The doctor called my name and upon laying his eyes on me he said: “I hope they sent you here as an urgent case!” I told him I just waited 4 months.

Before we even went to his office he took me to the cardiac department. I passed very old and grey people attached to IV’s. The doctor walked me straight to an empty room and hooked me onto machines!

Shocked much?! I knew it was not all in my head, even though people kept telling me that. But I did not expect this!

After hooking me to the heart monitor for 10 minutes he decided I was okay and we went to his office to talk.

More tests followed and the diagnosis was Graves’ disease. I had a pretty severe case where my heart was going at three times the normal rate. That was causing my shortness of breath. After listening to my story and realizing how long I have been walking around with these symptoms he told me I was lucky to be alive. A couple more months and I would’ve had a heart attack for sure.

19 years old and 15 pills per day

The medications started and a very difficult 2 years followed. I took 15 pills per day. 1 for my thyroid, 1 for my heart and all the others against the side effects of the first two pills.

I got “cured” of my Graves’ disease and was released from further monitoring. The doctor told me that 20 years in the future my thyroid would probably stop working sufficiently because of the medication I took. He told me not to worry, when that happens you just take 1 pill a day for the rest of your life and you will be fine.

Want to read what happened after this? I wrote that story in another article (click to read).

Conclusion

Because I did not believe my doctors, because I trusted my body and what I felt, because I trusted my own judgement even at this young age I finally got my diagnosis. It was not in my head!

Many people, friends, family, doctors, therapists will tell you it is in your head. Invisible illness is invisible because we can not see. That does not mean it is all in your head. You can not will yourself to be better. Like I could not will myself to breathe. It was not anxiety it was my heart.

Never give up. Be your own advocate and keep fighting!

This article is written by Natalie. You can read her story here.

April 3, 2016July 15, 2019

Fatigue in chronic illness explained

You can not see I am ill. From the outside I look fine.

I want to explain the fatigue that comes with being chronically ill.

Fatigue in chronic illness explained aka “The Battery Analogy”

Watch fatigue in chronic illness explained in video format. The article has been updated after the making of this video. Read the entire article for the most up to date version.

Fatigue is not like being tired. When you are tired you simply take a nap and feel recharged when you wake up.

I do not feel recharged when I wake up from a full nights sleep (if I manage to get a full night at all) let alone feel recharged after a nap.

Waking up

Let me explain:

My energy levels are like a phone battery that does not charge properly. I can sleep a whole night and still feel like I spent the entire night being wide awake. Imagine your phone not charging properly. The connection between the charger and the battery keeps breaking up. You have your phone connected to the charger all night long, but upon waking you find that your phone only charged 50%.

This is how it is for me:

There are good days and bad day’s. Let’s say I am having a very good day.

I have had a solid 8 hours of sleep and I have just woken up. I start the day with half a battery – 50%. (Mind you this rarely happens, most days it’s more like 30%, the daily charge varies greatly.)

I open my eyes, my muscles are stiff and painful. I try to wake up for about 30 minutes, but just lay there in limbo. Not able to move yet. Finally I get my body to do what I want, get out of bed and get dressed.

My phone battery is now at 40%, I did not even have breakfast yet.

Breakfast and starting the day

I prepare some food and eat my breakfast, I have 35% left.

Now it is time to start the day: take the kids to school, go to work, do housework, whatever I need to do today. Let’s assume it’s a low pain day and my energy lasts for a while. Because when my pain is high, my charge depletes much faster. Everything I do simply costs me more energy. Not to mention the difficulty my brain has to perform the simplest tasks!

My brain feels like it’s in a constant state of thick mist, at times I can’t remember the simplest words. I walk into rooms forgetting what I was supposed to do and everything just goes so slow. The worse my fatigue, the worse my brain fog.

I have done my daily tasks to the best of my abilities, whether it is caring for kids, doing housework or going to an actual job. This takes up the rest of my battery. I am at 1% and is not even lunch time yet.

Lunch/naptime

Personally I am very lucky, I work from home and can take naps whenever I need them. Unless I have a scheduled call or have to do something outside. Let’s say I am able to take a nap to “recharge”. Many chronic illness fighters are not able to take a nap during the day because they are working or taking care of their children or doing other things preventing them to take a nap. But let’s say it is a good day and you are able to take a nap like me.

A nap takes a while. Just sleeping for 30 minutes won’t help me at all. I nap for 2 hours. At first I don’t realize where I am or what time it is, when I wake up. It takes a little time for me to get back to reality/ But when I do I feel a little recharged.

My battery is now at 20% this is all I have left to use for the rest of day.

Rest of the day

I get up from my nap – 15% energy left

I do some work or housework – 10% energy left

I start to cook dinner, but before I am finished my battery is empty again. My whole body hurts and I can’t stand up straight anymore. I still have 3 hours left in my day before I can go to sleep again, I want to cry. I am literally running on an empty battery.

Finally it is time to go to bed, I am exhausted. I totally overdid it today but now insomnia kicks in, and I stare at the ceiling for half the night.

The next day is not such a good day. I wake up with 30% battery…

battery analogy explained purple tee — Click here to see the shirt in the shop

Life while being fatigued

This is how life for someone with a chronic illness is on a daily basis. You can have days where you wake up with the battery charged for 70% and you can have days that upon waking you feel like you only have 20% for that day.

Overdoing it one day will take away your energy for the next day. The other way around works too, although to a much less extent. If you know you have a big day coming up and you need energy, you can rest beforehand and make sure you are as charged as you can possibly get before starting your big day. With resting I mean having 2 or 3 complete bed rest days to try and hamster up enough energy to get through the big day ahead. Sleeping for an hour or two do not help at all.

Pain is another factor, when my pain is high my battery depletes much faster. I may wake up with 50%, but because of my high pain that energy is gone within the hour.

This is the most basic and simple explanation though. There are many factors that deplete your charge that I haven’t even touched upon, like socialising or just having to talk to other people, stress, doctor visits (or getting ready and going anywhere basically), trying to learn something new, the weather, hormones and many more.

Feel free to share the battery analogy meme to raise awareness for the fatigue that comes along with being chronically ill.

Fatigue in chronic illness aka Battery Analogy

This article is written by Natalie van Scheltinga, the founder of The Unchargeables. Read her story here.

Her dream for The Unchargeables is to reach every single chronically ill person on the planet and make them know that they are not alone. That they do not have to carry this burden by themselves. We are here to support each other.

Visit the shop for comfortable awareness clothes that show on the outside how you feel within. You can also follow us on the various social media platforms: Facebook, Twitter, Instagram, Pinterest.

March 13, 2016February 20, 2019

Spoonie parenting: the burden of guilt

As a parent you want the best for your children. Especially as a mum you try to do it all.

You cook, you clean, you play with your child, you take them to out of school activities, you help with homework, you have fun days out – all while also being a great spouse, daughter, friend and much more. Even healthy moms get overwhelmed with all of that (on top of the lack of sleep a young one brings with it).

Now imagine only being able to do 1 or 2 things per day before your energy runs out…

It is humanly impossible to get everything done that way.

Parenting as a spoonie (parenting with an invisible illness) has all the normal challenges all parents face, but also some extra’s. For example the tremendous amount of guilt.

“Your daughter is so mature for her age!”

People always compliment me that my daughter is so good at taking care of herself at 5-years old. They have actually been telling me this since she was 2. I will tell you the secret behind that accomplishment and why I am not proud of it.

When my daughter calls out for me early in the morning (5am used to be her normal time to wake up) I am physically not able to get out of bed. My limbs are numb. I can not move. I hear my child calling but can do nothing about it except yell back: “Do it yourself!”

During the day I would teach her how to get up and pee by herself from age 2. I taught her to get a blanket and sit on the couch with her tablet, until it is time for me to wake up.

This was not because of laziness or because I just want to sleep longer. It was an absolute necessity, some days I was just not able to get up at all.

Helping mommy – age 3 and up

From age 3 she was able to get her own juice boxes and rice cracker snacks. This was set up this way so she did not have to wake me during my middle of the day naps. These naps could not be skipped otherwise I was not well enough to make it to the end of the day.

She quickly learned that waking mommy was only allowed in emergencies. If she really needed help with something. And not for “look what I can do!” or “Do you like my drawing?”

For age 4 she started helping me, doing dishes, tidying up her room and other little things. When I had to sleep she gave me a blanket and a kiss and closed the bedroom door. She went to play by herself for an hour or two until I woke up again.

This doesn’t mean she is self sufficient all the time. I do get the “Mommy I need you” calls at least 20 times a day. But she knows when she is able to do it and when she really needs to let me rest.

The burden of guilt

I wish I was a better mother. I wish I could’ve looked at all her tricks and drawings. Instead I was sleeping her life away. I was sleeping because otherwise I can not enjoy the moments that I am awake. I was sleeping to make the best of the time we have when I am awake and okay.

My girl is 5 years old now. She can play by herself for hours. She gets her own drinks and snacks. She gets dressed by herself. She let’s me sleep in the early mornings and during the day.

She is starting to realize that not all mommy’s sleep all day. She is starting to realize that it is not normal to always be ill. She is starting to ask questions. (read more in the article: Mommy, why don’t you get better?”)

I am doing the best I can

I need to remind myself that I am doing the best I can. I am trying to get as healthy as possible and not go over my limits to be able to be there for her. I have to try and not think about the tremendous guilt I have inside of me about not being able to give my baby more. I am giving her all I have got.

Luckily I also have good days where we play, go out and have fun. She can have friends over most days because that does not take as much energy. She loves it!

Unfortunately I only became very ill while being pregnant and had no idea it would be like this. I was undiagnosed for far to long. I am working on my health as much as I can to get better health and more energy. I do as much as I can.

At least with these early lessons she will grow up to be a loving, understanding and independent adult.

this article is written by Natalie. Read her story here.

March 3, 2016February 20, 2019

“Mommy why don’t you get better?”

Having a chronic illness and having small children together is an extremely hard combination. Children do not understand why you need to sleep so much. They do not understand that the noises they make give you sensory overload. They do not understand why their mommy is always ill.

Explaining chronic illness to a 5-year old

My 5-year old daughter asked me the other day: “Mommy, why don’t you get better? You are ill, then you are better for a little while and then you are ill again!”

Well, what do you say to that? I choose to be honest and tell her that I don’t know why I am ill all the time. That it is normal to get ill and after a couple of days get better again. But in my case I am always ill. I always need a lot of sleep. I will never fully get better.

That was hard for me to say out oud, but my daughter took it very well. How else can she take it? She does not know any better than seeing me sleep during the day, ever since she was born.

Running the Mommy marathon

Having a chronic illness and being a parent at the same time is like running a marathon non stop. Your body tells you that you need rest, but your child tells you (cries or screams at you) that it needs tending to. “Mommy, I am thirsty”, “ Mommy, I am hungry”, “Mommy, I need to pee”, “Mommy, I want to play with you”

Being a normal healthy parent is exhausting and difficult enough. Now image hurting, having trouble sleeping, getting sensory overload from every little thing, not being able to wake up properly and a whole bunch of other stuff at the same time.

Spoonie parenting rollercoaster

How do I do it? I don’t know!

Some days are very hard and don’t seem to end. Some days are lovely and I enjoy immensely. Like the chronic illness itself there are good days and bad days. Parenting as a spoonie is the same. On some days my daughter takes all my spoons and just makes me want to cry. On other days she fills my spoon supply by being so lovely and helping me out. It is a spoonie parenting rollercoaster. I would not change it for anything in the world!

How do you experience being a spoonie parent? Leave a comment and let us know!

February 29, 2016June 21, 2019

What’s Wrong With Me?

My name is Natalie, I am the founder of The Unchargeables. In this article I will tell you my story.

Growing up I experienced stinging pains in my arms and legs. The doctors called it growing pains. Everybody ignored it, it will eventually go away…

When I was 14 years old I sat in class. I got shooting pains in my arms so bad that I fell off my chair. Test were done, nothing was found.

I have had thyroid issues ever since I was 16 years old. I had a lot of symptoms like shortness of breath, feeling rushed/nervous, was always hot and more vague symptoms. My doctors thought I had anxiety attacks and send me to breathing classes.

I took breathing classes for two years but the symptoms stayed…

When I was 19 a doctor finally took an extensive blood test and saw my thyroid was overactive. He told me to make an appointment at the hospital. There was a 4 month waiting list.

The day of my first appointment came. I was sitting in the waiting room when the specialist called me. He shook my hand and said: ” I hope you were referred here as an emergency, I can see in your face you are very ill”. I told him, no I was on the waiting list for 4 months and have been experiencing symptoms for years. He immediately took me to the cardiac ward (passing very old people that were waiting their turn) and hooked me up to a machine. SHOCK!

Long story short, my heart could still handle it and I was diagnosed with Graves disease. I got a lot of medication for 1,5 years and after that was cured. Or so I thought…

The doctor told me that I could get the opposite of Graves disease one day and I would have to take a pill everyday for the rest of my life. But I was still young and that was not going to happen for a long time.

He was wrong…

My pregnancy

I was 27 when I became pregnant with my baby girl. During my pregnancy I felt extremely fatigued, very moody, could not hold food down, was extremely nauseous until week 27 and started having sharp pains in my belly from week 33. I was ordered to stay in bed until the baby was born.

The birth ended up in me having an emergency c-section, the baby was stuck and my contractions stopped. We were slowly dying… These are the times that I am thankful for modern medicine because they saved me and my daughter that day. Even though they still did not diagnose me with anything yet.

Healing from the operation took very long, my health kept getting worse. 5 months after my girl was born I had post partum depression. My depression got worse and worse.

It took me months to find the right help. I went to the depression clinic for 2 years 2 hours a week. And through counselling I realised, maybe it is my thyroid again. It turns out I was right.

Thyroid specialist number 2 prescribed synthetic T4 thyroid hormones and I started feeling a little better. But I didn’t fully recover. I still hurt, do not feel hunger, have sleepless nights or nights/days where I sleep 20 hours, I am cold all the time, am ill all the time. This is not how life is supposed to be right?

What is up with me?

Aside from my thyroid issues I suffer from Fibromyalgia. The Fibromyalgia used to make my joints and muscles hurt and inflame to a point that it gives me a fever. Now that I know my limits better and am sugar free the inflammations are much less extreme. It also makes me super sensitive to sounds. The smallest sound can aggravate me and start a flare. I have regular migraine’s that make me bed bound for days. Then there are the days that I simply feel like my battery is completely empty and I can not get up. What is wrong with me?

Doctors keep telling me that my blood work looks fine. I am 99% sure that I have Hashimoto’s disease, but did not get it diagnosed yet. (Update: After writing this article Hashimoto’s has been officially diagnosed)

A while ago I moved countries, that does not make it any easier to get a diagnosis since I have to get into the system first. The better climate does help me tremendously with my symptoms. I feel more energetic (meaning I need less naps) I sleep better and have less pain. I can be a better mother for my daughter.

Every day I try to work on my health. I eat sugar free and gluten free, do not drink coffee or alcohol and try to not overdo it. And most of all try to stay positive!

I just want to thank everybody who participates in the The Unchargeables community. It makes me proud to be amongst all of you.

What doctors have said to me

In this video I tell you what doctors have said to me and how I react to it. Subscribe to the channel for more video’s like these!