My Medication Nightmare: What Should You do if You Run out of Your Medication

empty prescription bottles, out of meds, what to do if you run out of medication, tips, hashimoto's, thyroid, symptoms

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.

empty prescription bottle, time to refill, out of medication, tips, pharmacist, what to do if you run out of meds, hashimoto,'s, thyroid

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.

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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.

thyroid, hashimoto's, hypothyroid, hyperthyroid, medication, effects of not taking meds, symptoms

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.

out of meds, symptoms, migraine, fatigue, weakness, pain, exhaustion, hashimoto's

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.

missed medication, hashimoto's, thyroid, tips, self care, symptoms

Long QT Syndrome Isn’t QT (Cute)

Long QT Syndrome is not QT (Cute)

Long QT Syndrome is a rare heart condition in which the heart takes longer than normal to repolarize (recharge) after a heartbeat. This can lead to palpitations and/or potentially dangerous arrhythmias, leading to blackouts/fainting, seizures and death. Long QT Syndrome is one of the leading causes of sudden cardiac death in otherwise young, healthy people.

Elastic Heart

I was seventeen years old when I started to experience disturbances with my heart rhythm. My heart rate would ping from one extreme to the other, shooting up at inconvenient times, or it would slow down to the point that I had to sit and wait at the top of the stairs while I waited to feel less faint.

Long QT Syndrome is not QT (Cute)

Author wearing heart monitor

Thanks (but no thanks) to the frequency of these episodes, it was pretty easy for my doctors to prescribe me Propranolol to control my heart rhythm, although at this point I was not yet diagnosed with Long QT Syndrome. ECG monitoring pointed to episodes of supraventricular tachycardia (SVT for short – a faster than normal heart rate) and bradycardia (resting HR below 60bpm in adults) which was briefly controlled by the medication. Off I went to drama school with my medication, a high dose but it was working.

Eventually, the symptoms started to come back, and then they got worse. At one point my chest pain was so bad and continued for a few days so my best friend and I got the Tube to the A&E department, where we spent seven hours (she hates hospitals) and they didn’t find anything new, just the standard extra electrical activity from my SVT. Another time I simply passed out while walking down the stairs and suddenly I was on the floor with a huge gash in my ankle. We started to lower the dose of the Propranolol, and eventually, the cardiologist decided that there was nothing we could do for now as medical treatment was unsafe, but it wasn’t bad enough to warrant any other treatment.

My heart will go on (and on…)

I continued for a few years just living with a random heartbeat. It was annoying, but I got used to it. Most of my A&E visits were not cardiac related, as around the same time the rest of my health conditions started to get worse. I had ECGs (electrocardiogram – tracing of the electrical activity of the heart) consistently enough to be fine with GP input.

Around the age of 23, my SVT really started to play up again and I had a few A&E trips. One time a nurse somehow managed to get the cannula straight through my vein, which he only noticed when I pointed out that my blood was dripping onto my coat and that I was about to pass out. At the time I had a housemate who would give up her time to come and sit with me and escort me to the toilet (not her favorite part of the experience) and buy snacks for when I was finally allowed to eat again. Every time, it was the same thing – it’s your SVT, it’s good you came, if it gets worse come back again.

Long QT Syndrome is not QT (Cute)

So we continued this game. In the summer of 2018, I moved into my own apartment, which was great. My best friend and my mom helped me paint it. A couple of weeks later I experienced some horrible chest pains that were making me almost constantly dizzy, so after a couple of days, I called 111 who sent me an ambulance although by now it wasn’t quite so bad. I wasn’t having a heart attack or anything life-threatening, so they said I don’t have to go to the hospital, but they asked me “did you know you have a prolonged QT?” – I did not. I didn’t even know what that really meant. They advised me to see my GP urgently, but call the ambulance if it got worse again. I saw my GP the next day, who gave me similar advice – I was due to see a new cardiologist in January.

Continuing Problems

A month later, I woke up just after midnight with the worst chest pain I had ever experienced. I honestly thought I was about to die. I literally reached for my phone and was ready to text my family group chat that I love them, my colleague that I wasn’t coming into work because I was dying, and call myself an ambulance. I was too dizzy so I sat up for a few minutes trying to breathe, grasping at my chest in tears. For whatever reason, I decided to put a halt on my plans. In retrospect, calling the ambulance would have been the correct thing to do so they could see exactly what was happening. I did text my mom, just to say that I had really bad chest pains and that I was going to see how things go.

Blood Pressure testing equipment for Long QT Syndrome

After about an hour, in which the pain didn’t subside but I did feel calmer, I got up and slowly walked around my apartment to see if the movement would help. I had a glass of warm milk, and did my basic obs (yes, I have a blood pressure/HR machine by my bed) and decided I was too tired to deal with the hospital. I was too scared, too wired, and too chest pain-y to sleep. My breathing wasn’t the best but manageable. I decided it was safe to close my eyes around 5am, and after two hours of sleep I got up and went to work, where I felt okay at my desk but during a meeting kept fading in and out with a spectacularly low HR. 28bpm is not normal for me when awake, even if the meeting is boring.

I drove home and after a few hours I decided to call 111 for advice, and once more they sent me an ambulance. I sat in my recliner while they looked at my medical file (I have a physical copy at home), put electrodes on me and petted my cat Lily who watched the three paramedics suspiciously. They decided to take me to the hospital, and I’m proud to say that was only my second time in an ambulance. Not my planned Friday night, but oh well. The A&E nurse did an excellent cannulation.


After all my tests were done, an on-call cardiologist came to see me. She ordered some medication for the pain and a chest x-ray, just in case. Eventually, she came back and that’s when I got diagnosed with Long QT Syndrome. She told me that I really ought to be coming in as soon as I feel these chest pains and extreme changes to my HR, which is fair enough. This is important advice for anyone even without a heart condition – it is far better to be safe than sorry in these cases.

I saw my GP, who gave me similar advice and to avoid stress and strenuous exercise. My old NHS trust moved my cardiology appointment to February which was inconvenient but I felt like I knew enough to not worry too much about this. A lot happened with my other health conditions at this time but eventually, it was time for my cardiology appointment. Guess what? Because it was a different NHS trust that I’d left when I moved, they had nothing about my new diagnosis. But the cardiologist did laugh out loud at how quickly my HR changed. Thanks, I find it funny too.

I finally saw my new cardiologist this April 2019 (I didn’t want to see the other one again) and he seemed pleased with the management of my heart conditions, apart from one thing.

“I don’t want you swimming,” he said seriously when I described what kind of activities I do with work. “Don’t do it. You can go in shallow water if you are accompanied. But don’t swim.”

Well… I like swimming. Even with a bad shoulder, a useless ankle and crappy legs, I can swim well. I enjoy going swimming at work (I teach at a SEN college) and I love being in the water. Sure, the ocean freaks me out, but I love swimming in it on holiday. Weirdly, this is probably my least favorite thing about my heart condition. I understand why (if my heart stops in the water, I drown, if I have palpitations in water, there’s too high of a risk I can’t get myself out) but I just want to swim. Shallow water is boring. Swimming is the one thing that despite the restrictions my health puts on me, I could actually manage doing and felt worth the extra pain and fatigue.

Nothing Breaks Like a Heart

Aside from no swimming, and not doing strenuous exercise, Long QT Syndrome can be strange to manage. After doing my research and seeing that sudden loud noises can trigger it, I realised that many of my night episodes were probably because of my phone vibrating on my bedside table – not particularly loud, but in the silence, it does make me jump. I’ve had the vibrate function switched off for about five months now and the night episodes have decreased. Weird adjustment, but it works for me.

There is a lot of monitoring involved, as there always has been since I was seventeen. I hate the goo of the electrodes, and I hate when you walk into the ECG room and its cold and you have to take off your bra. I hate the ambulatory ECGs (worn for 24 hours or a week) because they’re itchy and you can’t take a bath (at the moment I can only take baths, as showers make me really dizzy). I don’t mind echo’s (echocardiogram – an ultrasound of your heart) because I find it cool that I can hear the whoosh-whoosh of my heart. I’m used to the blood tests, which my mom usually does for me (she’s a nurse) so these don’t bother me in the slightest.

A big struggle has been medical management. I have a whole load of other conditions which require medication, so I had to have a long review to decide what was worth the risk and what was not. The problem with Long QT Syndrome is that anything or nothing at all can set it off, so medications that interact with the electrical activity of the heart might just be the thing that top it off. On the other hand, without some medication, I don’t function properly, which is also a risk.

Although this all can sound scary, it’s not. Possibly because I got used to the diagnosis and the warnings a long time ago. The people at my work are incredible and there is an Occupational Health nurse who makes sure that I am supported at work, and my colleagues have adjusted to my humor about my unfortunate health. My friends likewise make sure we can do things together (so if I can’t go swimming, I can join them later for tea) and laugh at my jokes. I think that’s an important part of any illness, disability or condition – having people, whether that is your family, friends, or colleagues – who keep you included and feeling like yourself.

Long QT Syndrome really isn’t the best. While I can rock an ambulatory ECG monitor with a Calvin Klein crop top, the reality is not so pretty. Fortunately, I have a wonderful support network, some great doctors and the wonderful NHS 111 service at hand.

About The Author

Vai is Lithuanian who has lived in England since the age of 2. She has a love of theatre and performance (she danced semi-professionally in her teens) and has a degree in Drama. She discovered her passion is in teaching SEN college students and supporting young people with disabilities. Vai has been diagnosed with several different chronic conditions and thinks it’s important to share her experiences of living with chronic illnesses to support others going through the same thing.

How to Stay Positive with Chronic Illness

chronic illness, positivity, coping, mental health

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.

wins, Chargie wins, positivity, celebrating successes

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.

helping others, support, acceptance, positivity, Unchargeables, Facebook, Instagram

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.

acceptance, positivity, adaptation, facing challenges

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.

motherhood, acceptance, adaptation, help, support system

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.

expectations, adaptation, positivity, Chargie Wins

Make Money from Home With a Disability

making money from home, working from home, tips and strategies to earn money

When you’re living with chronic illnesses, some days you’ll find that it’s just too difficult to get up and go to what most people would consider a traditional job. Recently, I had a very trying flare. I would be up until 3 AM and then somehow need to be able to function at 6:30 to get my daughter ready for school. It was all just too stressful and too much for my body and mind to handle. This would happen too often, and unfortunately, my employers would not understand what living with chronic illness is like. Time after time, this pattern would cause me to lose my job.

That’s why about seven years ago I started marketing online. I did different things. I did affiliate marketing, where you will promote someone else’s product for a commission. I did advertising and had an advertising company where I helped small businesses advertise online. About 4 years ago is when I started with the Unchargeables community and began making the T-shirts and other products. I really LOVE this work, but unfortunately, it doesn’t pay my bills completely, so I’ve had to come up with other sources of income.

Survival Mode

Chronic illness has a way of turning your entire world upside down. It can often render people unable to do things they once were and force us to make very difficult choices. For many of us, it becomes impossible to continue to hold a full-time job, if we are able to work at all. This can greatly add to the day to day stress we feel in the overall struggle to survive. For many of us, not working at all is simply not an option, particularly as we endure the long and painstaking process of applying for disability benefits, which can often lead to rejection and reapplying. The process can take years. So what can someone with chronic illnesses do in the meantime to survive?

questions, brainstorming, work from home ideas

Time for a New Plan

Working from home is optimal for people with chronic illnesses who still need to work as it often can provide for a flexible schedule and work environment and eliminates an often long and stressful commute. As the founder of the Unchargeables, my main source of income come from the associated shop. Obviously, this is not an option for most people, but you can take the concept and apply it to your own skills. If you’re crafty, you can create a product or craft and open up your own shop on venues like Etsy or Amazon. A big help for me in my business is Clickfunnel, a software which helps structure and manage online businesses. This would allow you to use your skills at your own pace and bring in some income.

Harness Your Skills

alternative jobs

Another source of income that I’ve come to rely on is that I’m a freelance translator. I have started doing this in the past year to help supplement my income. It allows me to work from home and at my own pace. I have also taken consultation jobs using this skill. Whether it’s translation or something else, find a skill you possess and offer you services as a consultant. Perhaps you had to leave a full-time job due to your illness. Find a way to harness the skills you used and offer them for consultation. For example, if you were a teacher, tutor or write lesson plans. If you worked with computers, offer technical support. Almost any career has a skill that you can offer to provide consultation for if you break it down into its elements.

Sell Yourself!

When you’re chronically ill, you’ll find much of your life is spent in survival mode. It becomes so important to minimize physical, mental, and emotional stress, which are inherent with many traditional jobs. Just as you devise creative strategies for things like self-care and completing daily tasks, it becomes necessary to be creative to earn an income. Sell yourself! You are a valuable commodity with a lot to offer, even if it’s not how you originally planned.

self-worth, alternative jobs, work from home

Thyroid Disease: The lesser-known facts that drive us crazy!

When you mention thyroid disease to someone there are some facts that the person might already know from things they’ve heard about having an underactive (hypothyroidism) or overactive (hyperthyroidism) thyroid. However, there are some lesser-known facts that drive us crazy. Today we are sharing some of these facts with you.

Sleep Problems

Everyone knows that hypothyroidism can cause sleep cycle problems. How many nights do you lay in bed, staring at the ceiling, waiting for your body to decide that it was, indeed, going to let you go to sleep? You look at the clock and it’s almost midnight….and that’s early for you. You look again, and it’s 3 am. Yes, you dozed off for a bit, but here you are again, awake and annoyed. That’s a typical night for you. That’s a typical night for most people, but it’s even more common when your thyroid levels aren’t well-controlled, or during those lovely nights when your levels have changed and you haven’t gone to the doctor. We all understand those. Those aren’t the sleep problems I’m talking about here. That’s frustrating, but can be dealt with.

Thyroid Disease: The lesser-known facts that drive us crazy!

No….the sleep problems I’m talking about is called a hypnic (or myoclonic) jerk. You managed to get to bed at a decent hour, and you’re lying there, nice and heavy, finally embracing the black oblivion of sleep relatively easily. It’s been such a long day, and you’re exhausted. Ahhhh…. Then suddenly, WHAM!!! You better hope there’s no one lying in bed beside you or you’ve just punched them in the face. Or worse, maybe you suddenly find yourself on the floor. Maybe you got lucky and just find yourself sitting bolt-upright, a little confused and very disoriented… and THEN fall out of bed. I’ve actually woken up facing completely the wrong direction and nearly fallen out of bed just trying to lay back down. Sound familiar? 

This has happened to me SO many times, but there’s good news, and there IS relief in sight! Here’s what you can do!

  • DO try to go to bed at the same time each night.
  • DO minimize stress in the evenings. Unwind with a cup of tea or a hot bath.
  • DO develop a routine starting 30 minutes before bedtime. Put your pajamas on, read a book, brush your teeth. Every night. 
  • DO get a weighted blanket, or heavy blanket. These are readily available at many department stores or online.
  • DON’T watch television, use your tablet, etc., for 30 minutes prior to bedtime. This is the biggest mistake you can make. Television and screens stimulates the brain so your sleep cycle gets disturbed. If you MUST do something electronic, get an e-book reader. These are designed with blue-light filters and non-flickering lights. (Ironically, I’m writing this at 10:30 p.m., because I can’t sleep…)
  • DON’T drink caffeine in the evenings. I quit drinking caffeine altogether!

Eating Issues

*cough* *cough* *choke* *sputter* *cough* *cough* 

“Honey, are you okay?” Once I get done mopping up the food or water that I have subsequently sprayed across my placemat (or worse, my kid’s…), I tell him I’m fine.

This used to be a typical question during meals, and when my thyroid levels are off, it’s still a regular occurrence. I love chicken noodle soup, baked potato soup, chili, stews…. All of these are my favorite winter foods, but thyroid disease has forced me to change the way I eat. See, the thyroid drives your entire body… everything. It drives sleep cycles, hair growth, weight control… and reflexes, such as closing your trachea while food enters your esophagus. So those mixed-texture foods you love can occasionally become your worst enemy. I remember one meal that I choked on FOUR times. It involved my favorite broccoli and cheese soup, which, coincidentally, I don’t eat anymore.

Eating out now calls for careful consideration. There may be lots of food that I love, but not everything loves me at the dinner table. It’s more than just watching my caloric intake, thanks to the battle of the hypothyroid bulge.… Eating out can now be considered an adventure into finding out what new food is going to make me choke today! YIPPEE! 

Motion sickness

Roller coasters are great, and I love car trips with my family, but they make my family insane. Why? Because I always have to drive. I love driving, and traffic doesn’t bother me. I really don’t mind. But I have to drive, because it’s easier for them than having to deal with me being in bed for half a day after we reach our destination. Luckily for them, I don’t end up getting sick in the car (or at least I haven’t yet…), but I end up being nauseous and dizzy the rest of the day. I can ride in the front seat for shorter trips, but over a couple hours, I have to drive. My parents took me to dinner over the holidays…. I almost couldn’t eat because I had to sit in the back of a minivan for 20 minutes. That was just enough. Remember: Dramamine is your friend…

Thyroid disease and motion sickness.

Skin problems

Dry, itchy, flaky…. and spotted! No, I’m not talking about your dalmation. I can’t tell you how many times my best friend has looked at me and said, “You have something on your… oh, never mind. It’s just your skin.” After dinner, my husband will tell me to wipe my face because I have a stain by my mouth. No, that’s just one of the fun parts of my thyroid. I have one dark spot on either side of mouth, just below the corners. It’s not a stain, and I didn’t forget to wipe my mouth. If I was a guy, I could hide it easily with a goatee… but alas, I am not. Makeup might hide it for a while, but thanks to my unpredictable skin (another fun symptom), it also breaks me out. Ugh.

You Are NOT Alone!

The news isn’t all bad, even though it’s been all doom and gloom until now. Admit it… a grown woman rolling out of bed (and her teenager asking if anyone else felt the mid-night earthquake) is relatively funny, as long as it’s not you. The fact is until I met someone else who was open and honest about their hypothyroidism, I honestly thought that my problems with motion sickness, eating, and sleep was just normal changes in my body due to ageing.

Looking back, I can mark the exact time when my thyroid went wrong. It started when I was in high school, and somehow got missed during my first pregnancy. I thought that the fact that motion simulators suddenly made me queasy was just the fact that I wasn’t a teenager anymore. It wasn’t until I finally met someone who struggled with the same issues, who also had hypothyroidism, that I put two and two together. Now that I know these are all due to my thyroid, it gives me some idea of when my thyroid levels are all out of whack so that I can go see my doctor for a blood test. I hate getting stuck with needles, but I hate falling out of bed at 41 years old even more.

About The Author

Image of Writer Bethany Orr Standing next to a sports car.

Bethany Orr is a cellist, avid car enthusiast, and mom of two, currently residing in Fall Branch, Tennessee. She is a full-time parent who was diagnosed with autoimmune hypothyroidism in April, 2004. She also writes a blog geared to inspiring adult beginner musicians.

How Soon Is ‘Too Soon’ to Disclose Your Illness?

How Soon is 'Too Soon' to Disclose Your Ilness to Friends or Dates? Tips for spoonies and people with chronic illness

So you have decided to get to know someone new. Whether it’s through a dating website, a mutual friend, or something of the like, it often raises the question of how soon is too soon to tell the other person that you have a chronic illness. Tell them too soon and they might back away before you can get to know them, but if you tell them too late they might get upset with you for not disclosing the information sooner.  So when is the best time to tell someone about your illness?  

One of the things that makes this topic so tough to discuss with new people is the fact that everyone is different, and therefore there is no perfect formula that will work every time when opening up initially. Lord knows how many times I’ve sat in the car before a first date and wondered whether or not I should use my crutches or walker to get into the restaurant. It’s not every day a 23-year-old shows up to a first date using a mobility aid. I’ve been on dates where I’ve shown up using my crutches, and next thing I know the guy is telling me that he doesn’t see a future with me because he doesn’t want to be a one income family. On a first date! But there are times where I’ve pretended to be normal and healthy, and then on the fourth or fifth date talked about my disabilities and completely overwhelmed the other person, which effectively cuts them off or closes them up. It took a lot of trial and error for me to figure out what works best in my situation. 

Online Dating Tips

How soon is too soon to disclose your chronic illness when dating or online dating

When it comes to my online dating profile, I disclose right off the bat that I do struggle with physical disabilities and mental health issues. I don’t go into any detail further than that and usually let them make the first move on approaching me about it. People who have a bigger concern about being with someone who has a physical disability will usually ask questions within the first few messages, whereas the people who don’t seem as concerned about it will wait until much later to bring it up. When people do come to me asking questions, I do my best to answer their questions directly and as efficiently as possible (without giving so much information that it overwhelms them). If someone asks me about how much activity I’m able to do during the day, I’m usually honest about the fact that there are some days that I can do more than others. I like to let them know that I do have a gym membership and enjoy being active when I can, but if I’m too active on any given day, then I might be out of commission for the next few days to recover. I like to tell them that I do love going on walks or going to events like Comic-Con or the Renaissance Faire. I also tell them that there are some days I can barely get out of bed and have to use my walker just to get to and from the bathroom. I do my best to emphasize the fact that I am an independent person who is not looking for a caretaker that doubles as a girlfriend or boyfriend. 

New Friends

When I’m meeting new friends and don’t have the luxury of being able to state on an online profile that I have disabilities, I usually end up being very upfront about my disabilities. A quote that I have taken to heart when it comes to this was said by the late, great Dr. Seuss: “Be who you are and say what you feel, because those who mind don’t matter, and those who matter don’t mind.” I have been through a lot of ups and downs in my life, and I have learned that this saying really is true. The people who have stuck by me when I’ve been sick and struggling are the people who didn’t mind in the first place that I had disabilities. And the people who had issues with me being disabled when we first started out getting to know each other ended up not being there for me when I needed them most. As discouraging as it is to see these red flags of unsupportiveness from people when you get to know them, it’s better to know early on than to put the energy into the relationship and end up getting hurt. At the end of the day, it’s important that you stay true to yourself and do what you are comfortable with. Healthy relationships rarely grow from crossed boundaries.  

How soon is too soon to disclose your chronic illness to your friends?

Whether we like it or not, are chronic illnesses or a part of who we are. There’s no way to ignore them or hide them forever. It’s important that you take your time easing people into the reality of your life if they have not had experiences with people who have chronic illnesses before. The life that we are forced to leave because of our chronic illnesses is very overwhelming, especially for new people. It’s often upsetting to hear just how rough we have it. But slowly, piece by piece, strangers can turn into friends when they realize that your chronic illness is just a part of who you are and that you are a fabulous person no matter what. You’re not defined by your illnesses or your disabilities, and the people who truly matter will see that shine through.

Written by: Ren Kaspar. She is a spoonie struggling with POTS, hEDS, and gastroparesis, among others. She writes her own blog ( and is an outspoken activist on Instagram (@ungluing_stigma). When she’s not managing her illnesses full time, you can find her volunteering with Crisis Text Line or working at build-a-bear. 

Five Activities That Are Difficult When Living With Brain Fog

The Horror of Brain Fog

I know that we all have forgotten what we were saying mid-conversation or have spent 10 minutes looking for our keys. For most people, these are quick and sporadic events. But for those with chronic illnesses, it can be very different. Those with chronic illnesses generally use the term ‘brain fog’ (or something similar) to explain their moments of forgetfulness. But what is brain fog? Is it even a real thing?!? While it may sound like something from a horror movie, it’s quite the opposite.

The Horror of Brain Fog
The Horror of Brain Fog

What is Brain Fog?

Everyone has probably dealt with it at one time or another since it has many names. You may have heard of baby brain, chemo brain, Fibro fog or even Lupus fog just to name a few. But what is it really? Well, brain fog is a very broad term that encompasses lots of issues including problems focusing, learning, and memory. It can even cause short episodes of confusion or disorientation. This can also be a source of anxiety for some. While brain fog is probably not a serious condition, it is very frustrating and can interfere with daily life.

So what causes this condition? According to Healthline (, brain fog can be caused by a wide array of conditions. Ranging from stress to lack of sleep, and hormonal changes to diet and medications. Based on this list of causes, it isn’t a condition that only the chronically ill deal with, it can potentially affect anyone.

Since we know what brain fog is, and have an idea of what causes it, let’s look at some things that are difficult for those dealing with brain fog.

Brain Fog
Brain Fog

Activities That Are Difficult When You Are Experiencing Brain Fog

Carrying on a conversation– For someone dealing with brain fog issues, it can be very hard at times to carry on a conversation. This is the case because at times it is difficult to continue a train of thought. If something distracts you, your whole train of thought may be gone, and you may or may not remember where you were going with what you were saying.

Writing – At times you may actually lose words altogether or use the wrong words. Yes, this is pretty normal for all people, but for people dealing with brain fog it can be more of a problem. Sometimes the word may come back to you and other times you may have to describe the word you are trying to remember because the word is totally gone.

Holding down a job– Not everyone who has issues with brain fog will have problems keeping a job. But for some with more extreme cases, it may be hard to continue to work, especially if you are in a job where speaking or writing may be part of your job description. This is because, as we talked about before, those two areas are sometimes the hardest for people dealing with this issue.

Remembering dates or appointments– This is often a BIG struggle for those dealing with brain fog. For many, chances are if you didn’t write down your next doctor’s appointment or dinner with a friend on a calendar, you may forget it. It is not intentional and can be hard for others to understand. But unless it’s on a calendar, the chances are high that you will forget something.

Cooking – This can actually be a potentially dangerous problem. Like with any other task it is easy for those dealing with this condition to walk away from the stove when they are distracted by something else. It also can be difficult at times to remember those recipes that have been passed down for generations.

Memory and Concentration Issues Occurring with Brain Fog
Memory and Concentration Issues Occurring with Brain Fog

Brain fog may seem like a joke or something, and we know how funny it can be at times when we use the completely wrong word. But for those who live with it on a daily basis, it is far from funny. There are many things that become much more difficult when your brain is foggy, and it is quite frustrating for the person dealing with it. So, if you have a family member or friend who suffers from any kind of cognitive disorder, please try to help them remember rather than laughing at them.

For more information on brain fog, check out Healthline’s 13 Things You Know Too Well If You Live with Brain Fog, as well as WebMD’s Reasons You May Have Brain Fog.

Amber writes at She is a Registered Nurse by trade but due to her illness, she is no longer able to work outside the home, though her years of medical background give her a different point of view on many topics. Her goal in life has become raising awareness for the issues those with chronic conditions face, as well as for the conditions themselves. She also wants to make sure that those suffering from a chronic illness know that they are not alone in their fight.

Words Can Hurt: Sticks and Stones

Words Can Hurt: What Not to Say to Chargies on The Unchargeables

Sometimes people can be well-meaning, but their words can hurt regardless. We polled our Chargie friends in The Unchargeables community and asked…

“Which things do you wish people would stop saying to you (even if they mean well)?”

Here are some of the responses we have received.

Remember to think carefully about what you say to others.

We may mean well, but our words can hurt.

About the Author T.J. Madden:

Author T.J. Madden writes about how Words Can Hurt.Reader, Writer, Baker, Teacher, Chicken Soup Maker, Fighter for all things Healthier, Stronger, Kinder, and Better than yesterday.

Ehlers-Danlos Syndrome and Me

Dena writes about Ehlers-Danlos Syndrome at The Unchargeables.

Hi! My name is Dena and I have hypermobile Ehlers-Danlos Syndrome, or hEDS. There are several different forms of EDS. The most common types are hypermobile, classic, & vascular. There are several other forms that are fairly uncommon and quite severe.

The one thing all EDS patients have in common is our collagen is malformed at the molecular level. This means the “glue” that holds us together doesn’t work. Because our collagen is malformed, taking a supplement will not help our bodies fix it; we will just make more broken collagen. My form of EDS, hypermobile, shows itself primarily through extremely limber joints.

My Ehlers-Danlos Syndrome Story

Like many others with a rare disease, I did not get diagnosed quickly. As a child I was often told that the pain in my legs and hips was growing pains and to quit whining. When I got a little older and seemed to be constantly spraining my wrists and ankles and my knees were doing all kinds of weird things, I was called an attention seeker.

It wasn’t until my mid-30s that people started taking me seriously. I kept winding up in physical therapy and the physical therapist noted I had almost no stability in my hips whatsoever. My chiropractor at the time also commented on how hypermobile I was and that I needed to be really careful about losing strength because when I lost strength, my joints would dislocate easier. At this time it was also mentioned that my chances of successfully having a child were slim due to the excessive laxity in my hips and the danger that presented to the baby and to myself.

Shortly after this time I met somebody with EDS who recommended I join her online support group. I joined the group, eventually going to the physical meetings and met others with this condition. This led to several people saying I needed to be evaluated. So, finally having hope of an explanation for why I had seriously messed up joints, I went and saw a neurologist who specialized in EDS.

EDS Diagnosis

He did a number of physical examinations that demonstrated my joint laxity and asked me a lot of questions. The appointment lasted well over an hour. At the end of it, I was diagnosed with hypermobile Ehlers-Danlos Syndrome. Suddenly there was an explanation for all of those sprained ankles and wrists. There was an explanation for why my knees were so bad that coming home to an 18-step staircase seemed insurmountable some nights. It even explained other things. Because our intestines are also made of collagen, many people with EDS suffer with severe chronic constipation. Our guts don’t move. I saw a gastroenterologist and slowly started to make sense of things. That’s still an ongoing battle.

Pain Management

Resting from a flare of Ehlers-Danlos Syndrome.Since my diagnosis I’ve seen lots of specialists. I have to see pain management regularly because this is an extremely painful condition. It leads to having a lot of arthritis throughout your body, so holding your joints together hurts and the joints themselves hurt. It can be all-consuming. Good pain management is essential. That’s the thing that I would emphasize the most about this condition: if you have it and don’t have good pain management, do whatever you can to find it. Good pain management means the difference between being immobile for days versus having good and bad days. Yes, some of those bad days mean days spent in bed because the weather is bad and you are in a terrible flare. But it also means that there will be good days and you can go outside and enjoy the sunshine.

Physical Therapy and Bracing

The last thing that I would encourage people who think they may have this condition to be sure to look into is proper bracing. Physical therapy and bracing help reduce pain enormously. They also help reduce damage to the joints. I wear giant leg braces that go from mid-thigh to mid-calf so that I can walk safely. When I was first diagnosed I didn’t imagine my knees to be bad enough to need these giant braces. The person who assessed me for the braces laughed. It’s amazing what you learn to deal with when you don’t know any different.

Thanks to the EDS diagnosis, I now have splints on my fingers that make it use easier for me to use my hands; it’s easier to hold a fork without my hands cramping. I have thumb, wrist, ankle, and shoulder splints because they are pretty mangled from years of being a farm kid. That’s pretty much true for most my joints. Being a raucous farm kid did not make adulthood with EDS any easier, but was a good time when I was a kid. I’m glad I had those experiences when I was able to. But I would not try to climb a giant tree now!

Mental Health

It can be really isolating having a rare disease no one has ever heard about. It is extremely frustrating living through situations when all of the doctors who don’t know about it call you a hypochondriac. Even after diagnosis, physical therapy, braces, meds, the whole gambit, there will still be times spent in bed due to pain. It is isolating. It is depressing.

Being fully disabled young is not easy to cope with as an American, or probably for anyone. This is why we have online support groups like #Unchargeables. To make the hard times a little easier, to break the isolation, to find people with similar conditions and concerns. Support groups are vital. Therapy is also important and I encourage anyone who feels like they may need it to seek it. There is no shame in seeking out help.

For more information, visit The Ehlers-Danlos Society.

Dena writes about Ehlers-Danlos Syndrome at The Unchargeables.Dena is a medical zebra, meaning she has at least one rare condition. She suffers from hypermobile Ehlers-Danlos Syndrome, mast cell activation syndrome, POTS, asthma, degenerative disc disease, systemic arthritis, TMJ, seasonal allergies, probably Sjögren syndrome, and possibly more. She was a rehabilitation counsellor and mental health counsellor for a number of years. Dena now volunteers with several support groups.

What is A Chargie? Chronic Illness Terms Explained

What is a Chargie

A Chargie is a chronic illness warrior. A person who suffers from invisible illness, chronic pain, chronic fatigue or birth defects. We all understand each other and support each other here at The Unchargeables.

Another term that is often used to describe a chronic illness warrior is Spoonie. That term comes from the Spoon Theory (Click the link to read more about that).

Chargies understand what other Chargies are going through in terms of their chronic illness struggles. We support each other and cheer each other on. We celebrate the little wins in life; we call those Chargie wins. For example, when you washed your hair after not being able to for ages. Or when you left the house and did a chore that seems meaningless to normal people, but we understand the immense energy it takes to get these simple tasks done.

We will celebrate these with you.

Here are some of the things our Chargie members have to say about the community.


Join us on Facebook to meet your fellow Chargies!