Founder of The Unchargeables. Mother of a little girl, living with two cats and a dog on a sunny island. Very passionate about raising awareness for invisible illness because of her personal struggles with getting her diagnosis. She is living with Fibromyalgia, Hashimoto's disease, Raynaud's phenomenon, Cold Urticaria and Celiac disease.
It’ so hard to explain when you’ve not experienced it yourself, the debilitating fatigue that I often feel.
It’s not the same as being tired after working a long day. Even though that’s probably the only thing you can compare it to. And I’m happy for you, that you can not relate. But it is important for me that you try to understand what I’m going through.
Party time!
When I wake up, I am exhausted. As if I haven’t slept at all. You can compare it to going out partying all night, not sleeping and going to work right after. You feel like you can crash any moment due to lack of sleep, and maybe a hangover.
Well I feel like that, but without the partying and without the alcohol. I do sometimes have the hangover feeling though, as a bonus.
All day long I feel like I need a nap, the exhaustion is making me nauseous. I used to think it’s normal to feel nauseous when you’re tired. Recently I found out that’s not the case.
Got the flu
Imagine how you feel when you are sick. You have the flu or some other type of virus. You can’t think straight, forget everything, and just want to lay down. Not necessarily to sleep, just lay down cause you are so tired. Because your body needs it to fight of this virus.
You have no apetite, or a simply too tired to eat. Now you even have less energy, cause you have not eaten in days.
That’s me all day every day. My body is fighting itself, cause I have several autoimmune diseases. Naps are a part of daily life for me. There are many days that I’m too tired to eat, or too nauseaus to eat. Or too tired to prepare a meal. Bags of chips are my best friend. Not the healthiest but it helps.
Put yourself in my shoes
I know it’s a long shot, but hopefully these comparisons help you understand what it is to live in my body.
Please be patient with your chronically ill friends and family. They feel like they have the flu while hungover from an all nighter, all the time.
Many coutries around the world are ordering their citizens to stay home due to the coronavirus outbreak. Many people have never been homebound and have no idea what they are supposed to do now.
This is a Facebook post my friend Ami wrote, and I wanted to share it here for all of you to see.
What to do when you’re stuck at home
Stuck at home? Already going stir crazy? I can help with that. All y’all freaking out about self isolating and being stuck at home 24/7: welcome to my world. This has been my life for the past 9 years. Maybe after the crisis is over, more of y’all will come visit me, more often? (Riiiiiight)
12 tips so you don’t go crazy at home
Anyway:
•If you have a yard, get a comfy chair and shade and Enjoy it! Being outdoors, helps to make being home feel less confining. Even the simplest things like watching anoles, squirrels, birds, bugs, clouds, etc. Seeing their freedom to move and run is joyous.
•Start a garden! Digging in the dirt helps to get frustration out, while creating something beautiful, or food to eat is satisfying as all hell.
•Get CRAFTY! Always wanted to learn how to create something? Now you can YouTube ALL THE VIDEOS on how to do something you have always wanted to do! Order or brave the stores for things you need (make sure to disinfect yourself and items) and get crazy!
•play with your animals. This passes the time in ways that you both get joy out of!
•Time to PURGE! This is a great time to finally tackle that closet, spare room, or your whole house. Get items ready to donate or box away for a garage sale once the pandemic passes.
•Spring clean! I mean… it is about that time anyway, right? Get into those crevices you normally gloss over, because of whatever reason.
•Binge watch shows you’ve been meaning to catch up on. In this day and age, there are tons of streaming services to choose from.
•Read! This speaks for itself. There are tons of worlds out there to immerse yourself in.
•Too lonely? Time to make some calls! Interact via whatever app you want for video calls, texting, actual *gasp!* phone calls, etc. I bet your family would love to hear from you.
•Nap! Now you can catch up on some much needed sleep.
•Meal plan! Made a few big batches of food and separate to freeze for later consumption. Also, you can do this and see if any of your friends/family are in need of some help, regarding mealtimes.
•Pamper yourself! Indulge in that bubble bath with candles and whatever you want to relax! Paint your nails. Learn and experiment with different hair/makeup etc. Just have fun!
I think that is it, for now. I can’t always do a lot of these things, but I think you all will enjoy it!
Ami
Ami has been disabled for six years with DDD, herniated and bulged discs, spinal stenosis, severe spinal arthritis, and severe sciatica.
She also has PCOS, Endo, kidney disease, pleurisy, open heart surgery, COPD, PTSD, Carpal Tunnel, and manic depression. Creating this photo took a weeks worth of spoons away from her, but she wanted to showcase her passion. She was a Fire Performer, prior to becoming too disabled to do it any further.
Yes, this is serious. Yes, you have to be careful. I’m not downplaying the threat the coronavirus poses, but it’s not the end of the world. If anything, everybody now understands people living with chronic illness better.
Wash
your hands
When you live with chronic illnesses, in my case several autoimmune dseases, you always have to think about your health. Washing hands is a number 1 priority. Yes always, not only when there is a coronavirus on the loose. When I travel I have my hand sanitizer with me. And when I fly, I sanitize my hands after I’ve touched the little boxes you have to put your stuff in when you go through customs. Because those are hardly ever cleaned.
I try not to touch things unnecessarily, be mindful of where I put my hands, what I touch and to not rub my eyes or touch my nose or mouth.
I can’t believe I even have to mention this, but wash your hands after going to the bathroom, with water and soap. Apparently that’s a thing not everyone does.
To
go or not to go?
I’m always conscious about going to events. Not even big events; I’m talking birthday parties, dinners, bbq’s, anything that involves a group of people being in one place. I weigh how well my health is at that given moment before I go. And to be honest, I don’t often go.
One of the last big events I attended many many years ago
When someone comes to visit me, kisses me on the cheek (that’s what we do in Holland and in Spain) and right afterwards tells me they are not really feeling well, I am livid. This means that I can be infected and now will be bed bound for at least two weeks. The chance of this happened is quite big since my immune system doesn’t work properly.
This goes the other way around too. Therefor when I don’t feel well, I will cancel engagements. I don’t want to infect someone with whatever I may have. And believe me I catch a lot of stuff, since my immune system is not the best.
Physical
attendance is manditory
When I was in university, at some point I wasn’t able to physically attend the mandatory amount of 80% of classes. This was because I had to go to the hospital every four days for various tests. Not because I partied too much the night before and simply didn’t want to go. Nevertheless they failed me in a specific class three years in a row, due to lack of attendance. Even when my grades were up. In the end I stopped going to university because it was impossible for me to get my diploma with these rules in place.
Then I went to work jobs. Yes, I say jobs – plural. Because I couldn’t keep a single job, due to “lack of interest”. That means I called in sick too often, they thought I was close to burn out or simply not interested in the position. When that was the opposite of what was happening. It was just hard to physically get to the office every single day.
In interviews I always asked about the possibility to work from home. Every single time they assured me that was an option. Every single time it was not an option for me, for various reasons. None of which I agreed with, but they hide behind company policy.
What
does all this have to do with the coronavirus?
In a matter of weeks everybody in the world suddenly knows about washing your hands, being careful to not infect someone by keeping your distance, not touching your face, cleaning surfaces in public places and not have gathering of people.
Suddenly everybody can work from home, and it’s even company policy to work from home during the coronavirus time. “Stay safe!” people say.
Where were the stay safe remarks when I needed to stay safe? When I needed to work from home? When I needed to be able to pass a class without attending 80% of the classes physically?
The whole world now knows what it’s like to live with a chronic illness, and to be home bound. Unwillingly.
The future
Going forward, I hope this moment in time stays fresh in everyone’s memory, and people will treat others with a chronic illness with more compassion, understanding and kindness. And make accommodations. We know it’s possible. You have all proven it now. The job ahead of us now is to make it last.
This may sound a little strange but it is true. I live with several autoimmune diseases and sometimes it’s very hard to stay positive. When there is a flare, an increase of all symptoms, it’s easy to feel down and get even worse.
Writing helps me stay positive, but not just any writing. Writing and creating my Chargimals. They are little monsters that each represent a specific health condition or general symptom. They live in al alternate universe called Chargieville and have adventures together despite their limitations.
The world we made up in our minds
I am the person who creates the adventures for The Chargimals. Together with my partner in crime Jenni Lock, we live in Chargieville. In our minds. I can see the characters walking around in my brain and go on the adventures we create for them. My daughter (8) occasionally helps us write stories too.
Focus on the positive
How
does this help me stay positive you may think. First of all the
stories focus on the positive things you can do while living with
limitations. This makes us think about all the things we would be
able to
do. By focusing so much on the positive in a constructive way, it
makes me feel better. It makes me feel that, yeah, I am able to do
things. I may just need to do them in an adapted way, but that’s
okay.
I
can think about my issues and how I would work around them. The
Chargimals go on adventures that I create in my mind. To me it feels
like I am actually there. Like I am going on adventures as well. On
my good days I have a clear mind, I can write and leave the house as
well. On a bad day I can’t come up with new stories because of my
brain fog, but I can read the stories I’ve written so far, or work
on one with Jenni (giving feedback is easier than actually writing
yourself) and have them make me feel better.
Release frustrations
Writing
these stories and making memes gives me a way to release my
frustration with certain aspects around living with my autoimmune
diseases. It makes me feel like I’ve accomplished something. When I
read the stories to my daughter before bed she absolutely loves them.
The Chargimals are living and breathing personas in our house. We
know them all by name and know what their personalities are like.
It gives a sense of purpose and a sense of belonging when people reply with “I feel the same way”.
An unexpected friendship
Secondly
it has given me a friendship with Jenni, the writer. We met though
Facebook and really bonded over writing these stories. It gave me a
partner in crime, someone to confide in, someone to share it with.
Last
but not least, it strengthens my bond with my daughter. She adores
the Chargimals, and it hungry for more stories. She can’t get
enough! She knows we write them ourselves, and comes up with topics
and sometimes even whole stories. It’s something we can do together
and enjoy, it sparks her creativity and makes me feel happy.
Happy feeling
When
I’m feeling down, having a hard day, simply fed up with being sick
all the time, I can rely on the chargimals. Read the stories to my
daughter, talk about new ideas with Jenni, and connect with The
Chargimal Fans, which are the best people in the world!
Long
story short they make me feel valued and loved, even on my worst
days.
Want a bit of the magic too? Follow the Chargimals on Facebook or Instagram, you will see what I mean.
Let me start of by saying, I am very happy I don’t have cancer. It’s a horrible disease and I don’t wish it on anyone. That being said, telling me “At least it’s not cancer” is not making me feel any better.
Fibromyalgia the mysterious disease
I live with Fibromyalgia, there’s not a whole lot known about the disease. We have recently found out that it’s a progressive neuro-disease. At least that’s what they think now. It changes about every year, because the fact is, they really don’t know. It’s mysterious and there is no cure.
I am in pain every single day, the pain travels through my body. I never know how bad it’s gonna be, where it’s gonna show up or if I’m even able to function at all.
With fibromyalgia comes the fibro fog, or brain fog. That means that it feels like there is a thick fog in my brain preventing me to think clearly. Or even find the simplest of words, in any laguage for that matter (I speak three on a daily basis)
Next to my Fibromyalgia I have been diagnosed with Graves’ disease and Hashimoto’s disease (both autoimmune thyroid disorders), Celiac disease and Raynauds disease (both autoimmune as well). They say when you have one autoimmune disease, more will follow. Why is that though?
Many vague symptoms
Prior to being diagnosed with any of my conditions I had a long list of vague symptoms that didn’t seem to correlate to eachother. The first thing they test for is cancer. It’s the most well known disease that can show itself in different ways.
Along with a bunch of other test, including general autoimmune (ANA) test they came back. All your test results are negative. You are the picture of perfect health.
People around me were relieved. “At least it’s not cancer”. While I was relieved I didn’t have cancer, I still did’t know why I felt so ill all the time.
Graves’ Disease
At the young age of 19, after 3 years of being tested on a range of things without any results, this one came back positive. I had Graves’ disease. It was so extreme and in such far stages, that my main symptom (being out of breath) was caused by the strain on my heart.
At the age of 19 I was rushed into the heart monitor room because they were afraid I could have a heart attack at any moment.
But at least it’s not cancer, right?
The way to treat Graves’ disease back then, is to give you some type of chemo therapy, to slow your thyroid down. By the way chemo therapy is also used on patients with Lupus, RA and other autoimmune conditions as a treatment option.
A decade later
Fast forward a decade and some. The Graves’ disease is in remission, yay! I’ve gotten all the new diagnosis I’ve mentioned above. But also a msyterious new thing that is making me loose weight, fast. Very fast!
Even though I eat plenty, I keep loosing weight. Again they have done a lot of test, tested for cancer again. All clear. “At least it’s not cancer” someone says to me. Uhm that’s all nice and all, but I am loosing weight so rapidly that my organs are now in danger of failling. And they can’t figure out why.
“At least it’s not cancer” is again not making me feel any better.
6 months go by, and I weigh 45kg/99 lbs and I am 1.73cm/5 feet 7 I am very very underweight. Finally they figure out I have a bacteria causing all my issues and the road to recovery can begin. Yet again
What does the future hold?
At this point in time I think I have all my autoimmune issues and other health stuff under control. They are chronic, meaning they will never go away. The furture is uncertain, because we simply don’t know how my issues will progess with time.
I have new undiagnosed issues, like my teeth dissolving from the inside out. No idea why that is happening, but we’re trying to treat it.
I concider myself very lucky that I don’t have cancer. That is a fact. It’s also not what the article is about. My point is, there are things that are just as bad and deadly as cancer. And things that need to be treated the same way as cancer. The diagnosis “not cancer” isn’t always a good one. Please remember that when you tell your friend next time “At least it’s not cancer”
Most people have the best intentions at heart when they tell you something. Especially your friends. Assuming you’ve got good friends obviously.
I DO BELIEVE MY FRIENDS ARE GOOD FRIENDS, THAT’S WHY THEIR ADVICE SURPRISED ME SO.
My
goal in life is to spread awareness about living with multiple
chronic illnesses. How being fatigued is not the same as being tired,
how even when we smile we are in pain, how many people don’t
understand us. But we try to explain it to them the best we can.
Let me explain why well meant advice can be hurtful by giving examples of advice given to me by my friends.
“Don’t
be so negative and just go out there. Sitting at home by yourself is
not helping you feel better”
When I say I won’t be able to make it, it’s a form of self care. I’m not being negative. Living with a chronic illness is exhausting and I need a lot of rest. Just sitting up in a chair “not doing anything” is already draining my energy. I’ve tried to explain this in my article “fatigue in chronic illness explained”.
When there are multiple people there, and music playing, it’s even more exhausting. Multiple people, bright lights and music and noises can overstimulate me, making me agitated and on edge. It’s not a fun feeling, and this happens faster when I’m already not having the best day.
This is most likely the reason I’m telling you, I can’t make it today. It’s not as simple as taking some pain meds and keep going. Like another helpful friends suggested. This is not a muscle ache, pain meds don’t take away the pain and don’t do anything for my fatigue and possible overstimulation.
“Just
push yourself a little, when you put your mind to it you can do it”
The power of positivity is a good thing and you can accomplish a lot by looking at the bright side of life. I totally agree with this. But I can do that as much as I want, and it won’t take away my flare.
When
I go out with someone one day and won’t go out with you the next,
or vice versa, doesn’t mean I prefer their company over yours. It
means that I need to recover from my outing.
It goes both ways, if I know I’m going out of the house in a day or two I will preserve my energy now. Pushing harder won’t accomplish anything but getting a bigger flare, and having to recover for even longer. Sometimes it can even leave you with long term damage. Nothing is worse than pushing yourself over your limits when you live with a chronic condition.
“Did
you try yoga/kale/essential oils/alkaline water?”
Yes! I appreciate you trying to help me, but nobody is more invested in getting better than me! If there was a magic cure for my conditions, believe me I would’ve found it already.
Most of these things are part of my daily routine, eating an extremely clean diet, exercising (meaning basically just moving a little every day), supplements, essential oils, crystals and whatever else I can find that helps.
When you make a suggestion and I haven’t heard about it before, feel free to enlighten me and I’ll look into it. But when I tell you no thanks, for whatever reason, don’t push me. I don’t care that your sisters aunts friend was cured, I probably tried it and it hasn’t helped me. Or maybe I’m just tired of trying things for right now, and I simply don’t want to.
Knowing when to step back, knowing when advice is hurtful is hard, especially when you have no idea what it feels like to live the chronic illness life. But please, have respect and believe me when I tell you things. Don’t pity me and judge me, and don’t try to cure me. That’s all I ask.
My life is very unpredictable, this is due to my multiple chronic illnesses. I live with Fibromyalgia, Hashimoto’s disease, Graves’ disease, Celiac disease, Raynaud’s syndrome and Cold Urticaria, and never know what a day is gonna bring. Will I feel fine? Will I be able to get out of bed? Or will my body decide I won’t be able to walk today? Who knows? It’s the crazy symptom lottery in the game that never ends.
So when I’m having a bad day, and I am not able to do much or even get out of bed, there are not many things that make me feel happy, at peace or positive in the slightest. I’m a vey positive person, and my default it to see things from the bright side. But I’m not a robot, and do also have times where happiness and positivity are hard to find.
On those days the emotions go from despair to feeling worthless, inadequate and plain sad. Sometimes even angry. Even though I’ve had these chronic illnesses most of my life, living like this is still difficult. I’ve learned to cope, but will never really get used to it.
Loving purrs on the way!
The thing that gives me the most comfort when I am having a bad day, or a longer flare are my loving pets. My cats lay with me on the bed and give me unconditional love. They don’t tell me I need to be more positive, or try harder. They simply stay with me and love me. I’ve got a calico cat and a black one. They both love to cuddle, even though the black one is only 6 months old.
On a bad day, I’ll cuddle up with my little balls of fur for hours, stroking them, listening to their purrs. Somehow it has a healing effect on me. I just feel an overwhelming sens of peace, love and pure happiness. Regardless of how tired I am or how much pain I’m in. It doesn’t make the fatigue or pain go away, but it softens it for sure.
Am I a crazy cat lady?
Sometimes I feel like a crazy cat lady, talking to me cats like they are humans. Telling them all my problems and feelings, like they really understand what’s going on. Or do they? Animals are smarter then we give them credit for, I believe. They feel it in the air when something’s up, and act accordingly. In my case, they don’t leave my side and give me purrs and cuddles.
I have a loving family who support me through it all, but even they can’t give me what my furry friends can. Unconditional, healing love and devotions, without distractions.
Do you have pets that make you feel the same way? I would love to hear about them in the comments.
We’ve all been there. Something goes wrong somewhere and it delays us being able to get the medicines we’ve come to rely on to make it through each day. Maybe it’s a problem with a doctor writing a prescription in time before you run out. Maybe you have the physical prescription, but the pharmacy it out of the medication and needs to order it. Maybe funds are tight, like they are for many of us, and you just can’t afford the medication. It could really be any reason, but most of us have had times when this has been an issue. So now what?
My medication nightmare began over a month ago. I live in the Canary Islands, near Spain, but I order the thyroid supplement I take for my Hashimoto’s through a company in the United States. Since it’s being shipped internationally and has to go through customs, I am always sure to allow plenty of extra time. I’ve never had a problem, until now that is. It’s been over a month and I still have not been able to receive my medication. No matter what I do, I seem to hit another roadblock. At this point, I’ve actually cancelled the order and attempted to reorder in hopes I won’t have the same issues, as I’ve never encountered this problem before, but only time will tell.
So what can you do if you run out of a medication? Hopefully, you’ll never be in this predicament, but if you are, here are some things to try.
First, try to avoid the problem. It happens. Many of us take multiple medications throughout the day. It’s easy to lose track of how many pills you need to make it through the week. You look at the bottle and think you’ll be okay, until, before you know it, you’re down to your last pills. If you can, try to order the medication before you’ll actually be out of it. This will also allow time for the pharmacy to order it if necessary. Some pharmacies have automatic refills to help with this, but a good way to ensure you won’t run out is to make a habit of reordering the prescription a week before the date it was last filled. For example, if you last filled your prescription on the 20th of the month, reorder it on the 13th of the next month. Set a reminder if you need to.
Second, pay attention to how many refills you have left. Often with chronic illnesses, you may take a specific medication for months or years on end. With the exception of pain medications, doctors will often allow multiple refills on a single prescription. Try to pay attention to this so you’re not trying to refill a prescription when no refills are available. Even when you or your pharmacist notices a new prescription is needed, the doctor’s office may not be able to fulfill the request immediately for any number of reasons. Therefore, it’s important to allow time for this. The one week rule from the previous paragraph works well here too. Ideally, you may have realized the need at your last appointment and requested the prescription then, but allowing the week buffer leaves enough time for your pharmacist to contact the doctor and the doctor to respond.
But what if you miscalculate or are even away from home and run out of your medication? Or maybe it’s a weekend and your doctor’s office it closed? There are a few things you can do. If you’re using your home pharmacy and have a history of taking a particular medication, your pharmacist may be able to give you an emergency supply of the medication, or just enough to make it through a couple of days until a prescription can be attained. You can also take the original bottle from the prescription into another pharmacy and, providing you have refills, the can fill the prescription or contact the prescribing doctor or even an on-call doctor when necessary. In a pinch, you may also be able to find a walk-in clinic and have the doctor there address your prescription needs.
Even with all of this in mind, sometimes life happens and you’re stuck without your meds. As a chronic illness sufferer, I know that with some of my medications, even just missing a single dose can make a huge difference. Then, of course, dealing with the resulting flare can be horrific and impact every aspect of life, from sleep habits, to brain fog, to eating, and participating in daily activities. This is the position I currently find myself in.
As I said earlier, I’ve been waiting for my thyroid supplement for over a month, but it’s caught up in customs. Initially, I tried rationing my medication to try to make it last longer in hopes that my order would arrive from the US. I would either take less doses each day or take smaller doses to stretch out what I had left. I figured something was better than nothing and really expected this to be a temporary situation. My body can definitely tell the difference. Even with the smaller doses, I was much more tired than usual, experienced more migraines, and just generally had more pain.
Now I’ve been without my medication for a while, and my body is not happy. I’ve become virtually dysfunctional. My fatigue is unending and the pain is unbearable. It’s hard for me to complete work, do household tasks, and even spend time with my daughter. All I want to do is stay in bed all day.
As much as I’d love to build a blanket fort and not come out until this nightmare is over, life must go on. For me right now, that means trying to organize my house and make it more livable as I’ve recently moved. I don’t feel well. Like I said, I’m exhausted, weak, and in pain, which is making it difficult to focus on even basic tasks. In the life of a Chargie, these factors can lead to disaster.
Not being able to take my medications has effected me in ways I would have never imagined. Recently, I was trying to make my house a little less chaotic and more settled after my move. I decided I would at least try to get rid of some of the empty boxes scattered throughout my house, as I thought this task required very little energy or concentration. Well, Things didn’t quite go as I had planned.
I was attempting to fold a larger box to get it out of the way. Like I said, I’ve been feeling weak and my dexterity is waning from being off of my meds for so long, so the box slipped out of my hands. I bent down to try to catch it, when SMACK!!! I hit my head on the corner of a cabinet. OUCH!!! As if I didn’t already have enough problems, I managed to give myself a concussion. Even the most menial tasks can require Herculean effort on a bad day. For more on this story, check out my YouTube video above.
Through all this pain and aggravation, I did learn a few things. First, plan ahead. Normally, I do this, but this time it wasn’t enough as my meds are still being held hostage. Maybe now I know that what I thought was more than sufficient time may not be. Second, have a Plan B. In my case, there’s really not much more I could have done for this particular medicine, but it’s good to know alternatives if you do find yourself out of a medication. Panic and stress will only make everything worse. Most importantly, if you do find yourself in this situation, be gentle with yourself. If you are already in a vulnerable and weakened position from being without your meds, pushing yourself will generally make you feel worse. While yes, life has to go on to some extent, pick and choose your battles so you don’t make your flare worse than it needs to be. Everything else will still be there when you’re feeling better.
I have had stomach problems since I was a teenager, but I took me a until I was in my thirties to figure out the cause of my issues was actually Celiac Disease. As a teenager, I always had terrible cramps and acid reflux. By the time I was sixteen, my doctor put me in acid blockers to try to control my symptoms. I took the medicine every day for years and it helped, but my symptoms still persisted. Being that I was sixteen, the doctor’s attributed the cramps to my monthly cycle and figured the acid blockers would resolve the rest. But they didn’t. I eventually just learned to live with the symptoms and go about my life. I thought this is just how my life would have to be. After all, I was feeling better, just not good.
When I was about twenty, my cramps became even stronger and more frequent and I was having trouble coping with the pain. I once again returned to my doctor, and he suggested that I do an elimination diet to see if what I was eating may be contributing to my symptoms. He suggested I replace the multigrain bread I normally ate with plain white bread or spelt which would be easier to digest and that I should eat a lot of yogurt, which has good probiotics and is easy to digest. He also prescribed a medication to help with the cramps. I made the dietary changes, took the medication, and it helped a little, but I was still suffering.
It’s Hard to Work when You’re Chronically Ill
While I was trying to figure out the cause of my gastrointestinal issues, I was also working a full-time job at a call center. This was the type of job that required you to clock in and out every time you took any kind of break. Even if you were just going to the bathroom, you were required to clock out when you left and back in when you returned. My symptoms had gotten so bad that I would have to go to the bathroom six or more times a day and I could be in there for ten minutes each time. Well, my employer took notice of this and I was called in for a meeting. As much as I tried to explain that I was legitimately ill and couldn’t help it, all my employer saw was the time and my contract was not renewed. After about six months, this extreme flare finally calmed down. My stomach ache and acid reflux were just a part of my everyday life, but we’re not so bad that it was disruptive to my day or my life.
On Vacation, but not from my Symptoms
Some time passed and now I was about 26 and I went on a vacation to the Azores, Portuguese islands in the middle of the Atlantic Ocean. I looked 4 months pregnant! My stomach was extremely swollen and it hurt a lot. I had been been living on antacids and other medicines, but nothing was really working anymore. At the time, I thought my body may be reacting to the different foods I was eating. In this area, they tend to prepare everything using a lot of butter and I had stopped eating butter years ago, so I thought I must not be used to it anymore and that’s what was probably causing my reaction. I was convinced the butter was the cause of my problems. Even when I just ate a salad, which obviously had no butter, I still felt really badly. It was so extreme. I was only there for a week or two, but when I showed people pictures from my trip, my physical transformation was so drastic that people would ask me if I really was pregnant.
I didn’t know what was going on. As chronic illness life goes, you get some bad days, then you get some good days. Every year you have is different. Still, I was undiagnosed and I went on with my life. All the while, I kept taking stomach liners, acid blockers, and other medicines for my bowels. This became my daily regimen in order to live without constant abdominal pains and cramps.
Making Changes
Some more time past and now I was 31 or 32 years old. I started researching more into my health and looking into natural remedies and the holistic way of living. I wanted to change my lifestyle to try to feel better. I had stopped eating sugar years prior and it made me feel so much better, but I noticed after a couple of years, the effects of that wore off or something. I decided to make some other changes I hoped of regaining that feeling. I knew I had to do something drastic. That’s when I started the autoimmune protocol diet. For this diet, you cut out all sugar, lactose, gluten, rice, seeds, and beans and then slowly start reintroducing them back into your diet to see which ones are aggravating your body. For me, cutting out gluten was the hardest. I’d literally dream of bread and croissants and pizza. It was crazy!
After being on the autoimmune protocol diet for about 3 or 4 months, I really did start to feel better and I tried to introduce things back into my diet. During that time, I would get together with a group of friends monthly, and we would cook and eat dinner together. This day, we each brought something to be grilled and so we would all prepare the food and then share it amongst the group. One of my friends made something breaded. I don’t remember what is was, but it was being cooked on the same grill with everything else. As I was still not eating gluten, I did not eat the breaded food, but instead partook in the other options. but it was in the same grill.
By the time I got home and I was so sick! I got cramps and I had major brain fog. I couldn’t think straight. I was sweating profusely and was sick and exhausted for three days. I thought this was an extreme reaction, so I started doing research into what could have caused it. That’s when I discover the cross-contamination that can occur with gluten. Still, I was surprised that I had such a strong reaction. I learned that this is actual quite normal when someone is exposed to gluten after long periods of time without it.
My Daughter is Following in my Footsteps
About six months later, I noticed my daughter, who was about four at the time, was very tired and cranky all the time. She was a picky eater and would only really eat bread, potatoes, doughnuts, and of course candy. This seemed strange to me, so I brought her to he pediatrician thinking she may have picked up a bacteria or parasite somehow. We went to the doctor and had her tested, but the tests were negative for any bacteria or parasites. Still, I knew something had to be wrong, so I asked her doctor what else could be done. He told me there were two things we could try. The first option was to virtually turn her inside out running tests to look for anything and everything. Since she was still so young, her doctor thought that would be extreme. The second option was far less invasive. He suggested eliminating gluten for about two weeks to see how she responded. This made a lot of sense to me in light of my own experiences with gluten, so we decided to give it a try.
Going gluten-free was very upsetting to my daughter at first. She had seen the strict autoimmune protocol diet that I had been following and thought that was what she would have to do too. I explained to her that what she was doing was not nearly as strict. She would not have to give up everything, only the gluten. Over the next three days, we finished all the bread and doughnuts and other gluten-containing foods in the house and went 100% gluten-free. The rest of my family wanted to support, so they stopped eating gluten too so she wouldn’t feel so badly. Her dad, my mom (her grandma), and my sister (her aunt) all gave up gluten so my daughter wouldn’t feel alone.
After four days, I had a different child. She had energy and was not so cranky. I could hardly believe the difference! Just by not eating bread, cookies and other gluten-containing foods, I had my daughter back. I still let her have some treats, like cake, but she ate the gluten-free kind instead, as I wanted her to still be able to eat similar foods to what she was used to. After a month, we went back to the doctor to report how it had gone. The doctor said that her improvements indicated that she has celiac disease.
It’s in my Genes!
By this time, my daughter was feeling better and had gotten accustomed to eating the gluten-free foods, so my mom and sister thought it would be okay for them to go back to eating the regular bread and other foods they had given up to support my daughter, but their bodies had other plans. When they ate regular bread again, they got really sick. Unbeknownst to all of us, we all had celiac disease.
It all made sense now. As a baby, my daughter had the worst acid reflux. She couldn’t hold her milk down and she never wanted to eat the porridge. It was difficult to make her eat stuff because she couldn’t keep it down. Thankfully, now we know why. She had been diagnosed with celiac when she was 4 and now we know that it tends to run in the families.
Everything is Starting to Make Sense Now
It took me over 30 years to figure out that I have celiac disease. I believe that many of my autoimmune issues stem from me having undiagnosed celiac disease. Celiac disease is an autoimmune disease in which your own immune cells track the gluten enzymes within your small intestine. Your body is basically attacking itself. Looking at my timeline of all my diagnosis, I think this could be the cause of many of my chronic illnesses. I started having my Graves symptoms at 16, but I only got diagnosed at 19. Then at 28, I had Hashimoto’s Disease that went undiagnosed for about 6 years. After my Hashimoto’s diagnosis, I started having Raynaud’s disease, which is also an autoimmune disease that effects blood flow. If you don’t figure out what’s causing autoimmune conditions, they have a tendency to accumulate. Since I discovered my celiac disease so late, I wonder if that may have been the catalyst for my other conditions. I may never know.
I hope my family’s story helped you in some way. I know by sharing my experiences with my own family, my mom and sister have given up gluten and are now feeling better. It’s not for everyone though. Some people have experimented with going gluten-free to try to lose weight or think it’s the cure for any ailment, but it’s not. Going gluten-free is not necessary for everyone. If you think you may have celiac or be gluten intolerant, talk to your doctor and consider trying an elimination diet to find out. Some people can eat gluten with no problems, but for those with celiac, it is a real and serious autoimmune condition that effects their daily life and not just another dietary fad.
When you’re chronically ill, it can be very easy to lose yourself in feelings of low self-worth and self-pity, and to generally feel depression and despair. Often we lose the ability to do what we once could and just getting through each day can be a challenge. You tend to focus on what you are no longer able to do or what other people who are healthy can do. Even though you are sick, you can still try to focus on the positives or things you can do in order to live your personal best life. In our community, these small celebrations are called, “Chargie Wins”.
The Power of Positivity
I tend to be a very positive person by nature, so I subconsciously tend to find these “Chargie Wins”, even when I’m having a really bad day. Like I said, it can really be anything meaningful to you that you’ve been able to accomplish during a given day. For example, I have not been feeling well for the past few days. I canceled all of my plans and got no work done. Yesterday, I was finally able to take a shower and wash my hair and today I straightened my hair and did my makeup to record a video. To someone without chronic illnesses, these are things they take for granted that they are able to do everyday, but for me, these are Chargie Wins.
Do Unto Others
As I said, I have not been feeling well and have been in bed for three days. It’s very easy for someone to feel down under those circumstances. When people don’t feel well physically, it can also effect how they feel mentally or emotionally. When this happens to me, I find it helpful to focus on the positive. Something that always makes me feel better is helping other people. I’ll go to the Unchargeables Instagram account or Facebook page and read through the posts and try to give other people advice or encouragement. It can also be a good distraction from whatever I may have going on. I’ve found that when I support others, they return the support when I need it as well. It can even help to know that someone else relates to what you are going through. This also helps me to feel productive and like I’m doing something good in the world.
I also enjoy looking at the Facebook and Instagram accounts for another reason: other people will share their Chargie Wins. This can be a good reminder to celebrate the little things when it doesn’t seem like there’s anything worth celebrating. It’s also a reminder that everyone has their own challenges and good and bad days. Sometimes it just gives me a gentle reminder to stay positive and tomorrow can be a better day.
The Path to Acceptance
At times, my health will not allow me to be on the computer or use screens. Since so much of my work for the Unchargeables requires being at the computer, these days can be difficult for me. I have learned that I just need to accept this and hope that things get better, but for now I have to just do whatever I can do. On days like this, I will practice self-care and do things like listen to podcasts, cuddle with my animals, or spend quiet time with my daughter instead. Life with chronic illness is unpredictable. You never know how you will feel from one day to the next. That’s why it is important to set realistic goals for yourself and manage expectations. With this comes acceptance. For me, acceptance means that today was a bad day so I didn’t accomplish everything I wanted to and hopefully tomorrow will be better.
My capacity for acceptance was challenged during my recent move. I had planned out my entire week. I told myself I was going to do a certain amount of work and packing each day in order to meet my goal in time for my move. Well, that’s what my mind said, but my body had other plans. When the first day of packing came, I was physically unable to do it. I thought, well, it’s not a big deal. I’ll just do more tomorrow. Tomorrow came and I still was not feeling well enough to do anything. The same thing happened the next day. Part of me wanted to scream! My plan did not work and I was off of my schedule and still had so much to do. I calmed down and realized that there was really nothing I could do about it. That was something I had to accept. I would get everything done at my own slower pace as I was able. Sometimes you have to amend your expectations to fit circumstances you cannot change.
It’s Hard to be a Mom
Another area of my life where acceptance comes into play is when trying to raise my daughter. Being a chronically ill mother is the worst! I often feel guilty for not feeling well enough to play with her as much as she would like. I can’t always take her to the park or the movies or even just outside to play. My body will not allow it. I feel guilty for not being able to do some of the things parents who don’t have chronic illnesses can do with their children. It’s hard, but I’ve learned acceptance in this area of life too. On my bad days, I’ll try to do things like cuddle with her and watch a movie or even reading stories.
I’ve also accepted that I need help sometimes. I have told the other kids’ parents that I’m chronically ill. I will plan play dates for her with other kids so that she can still have fun even when I am not feeling well enough to play with her. I have told the other parents about my illness so that they can not only be there for my daughter, but myself as well. Everyone needs help sometimes, but when you’re chronically ill, having that support system becomes even more important.
There’s Always Tomorrow
I’ve learned that the biggest part of staying positive when living with a chronic illness is to manage expectations. For many of us, those expectations are drastically different from those which we had for ourselves prior to becoming chronically ill. Instead of focusing on what we used to do or can no longer do, it it important to shift attention towards the victories we can attain. These Chargie Wins, though they may seem minor to those who are not chronically ill, should be celebrated for the accomplishments they are. Furthermore, even if something did not work out quite as we would have liked, accept that it may not be able to be changed, but know that tomorrow is another day.
