The Reality of Periodic Paralysis & IBS – Guest Post by Morgan

Morgan’s guest post is the 51st post in the segment on my blog, called “The Reality Of…” which gives others the ability to share their story and raise awareness of the disabilities, illnesses, impairments and invisible illnesses that they have.

Meet Morgan!

Hi! My name is Morgan, I am 24 and I am from Charlotte, North Carolina. Right now, I am preparing to graduate with a Bachelors in Sociology. I have a blog called Chronic Realism, where I write about my chronic illness, poetry, and whatever else may be on my mind.

An illustration of Morgan.
Artwork by River Works Studio

My Story

I live with Periodic Paralysis, IBS (Irritable Bowel Syndrome), GERD (Gastroesophageal reflux disease), Asthma, Anxiety, and Depression. I’d like to raise awareness of IBS and Periodic Paralysis. Periodic Paralysis is a rare group of genetic conditions that cause weakness and/or paralysis. I live with Hyperkalemic Periodic Paralysis.

IBS is a chronic gastrointestinal disorder that causes diarrhoea, abdominal pain, cramps, constipation, and bloating. I think that it is important to talk about IBS because there is a lot of stigma around digestive system diseases and I don’t think that people are aware of how impactful it can be in someone’s life. It can feel kind of lonely, embarrassing and invalidating when there is such a stigma around discussing something as natural as eating, or pooping.

Common Symptoms

The symptoms are caused by changes in potassium levels in the blood. For people with Hypokalemic PP, changes from normal to low levels cause weakness or paralysis. People with Hyperkalemic PP become weak/paralyzed because of too much potassium in the bloodstream. For me, weakness or paralysis can be triggered by a wide variety of things.

Some of them are eating too much or too little, waking from sleeping, getting too hot or too cold, weather changes, stress, certain medications such as cold medicine, and my period.

Outside of that, I also experience Myotonia (muscle stiffness), tiredness and fatigue, slurred speech, aches and pains, droopy eyelids, and brain fog.

When I was first diagnosed with IBS my stomach would feel nauseous and unsettled all of the time. I would also have painful stomach cramps at bedtime. The pain and nausea made me feel exhausted and weak all of the time.

How it Affects Me

Since sleeping and waking is a trigger for me, I cannot wake up early in the mornings. No matter what time I go to sleep or how much sleep I get, I have paralysis and weakness every morning. The longer and deeper I sleep, the harder it is to wake up. That being said, I could sleep for a couple of hours so that I could get up in the mornings, but 1) Sleep deprivation sucks and 2) I would eventually run out of energy and need to sleep immediately.

When I am able to wake up in the mornings, I can hear everything that’s going on around me, but I can’t move. Eventually, be it 5 minutes, 30 minutes, and hour, 2 hours, I am able to get out of bed. When I do finally get up, I feel really weak and experience myotonia and stiffness in my body.

Needless to say, I avoid mornings at all costs. I schedule everything after 12pm at the earliest and have become quite the night owl. This isn’t common for everyone with HypoPP as it affects everyone differently.

Because I am so sensitive to many things, I have to be careful of what I eat. For HypoPP, I avoid high amounts of carbs, sodium, and sugar. For GERD and IBS, I avoid tomatoes, gluten, high fructose corn syrup, fried foods, dairy, citrusy foods, spicy foods, garlic, onions, peppers, alcohol, soda, and caffeine. It can be really difficult sometimes because if I eat the wrong food then I can become weak or get an upset stomach.

With IBS it can be really nerve wracking to try something new or foods or drinks that you used to eat before without any issues. Just knowing that something as simple as eating a meal or accidentally taking a bite of something can run you to the bathroom, and cause a lot of anxiety and embarrassment.

I’d always get this pit in my stomach when I knew that I’d eaten something wrong, it’s a strange feeling. As soon as it settles in my stomach I can tell right away if it will agree with me or not. I don’t experience diarrhoea as bad as other people with IBS but, it is really scary to know that you’ve accidentally eaten something and there may be nowhere for you to use the bathroom.

In the beginning, I was very limited by the elimination phase of the diet so I felt isolated and excluded when going out to eat with friends or family. It takes a lot of self-control, let me tell you. But, it’s not all bad, it just takes some getting used to. It’s a process of really getting to know your body and what you can eat freely and what you have to be cautious of.

Getting started was the hardest part, but it felt really good to have a calm stomach.

Learning to Adapt

Technically, I have had my disability since I was born, but I did not have any symptoms until I started puberty. I was middle school aged so I was about 12 or 13. It was a really huge surprise for me and my family because no one else in my family had any experience with the condition.

Usually, HypoPP is genetic but my results came back as inconclusive. This is not uncommon because there are still a lot of gene mutations that they do not know about. There was a long adjustment period and it can be really difficult at times. It has taught me to appreciate my body and take care of it as best I can. I’ve found that practicing self-compassion and mindfulness has been really helpful.

I have had IBS since January, 2019. I adapted with IBS by changing my diet and my mindset. Instead of saying “well I can’t have that”, I would say to myself “I can have this in moderation”.

When going out to eat, it helped to look at the menu for places ahead of time or suggest places where I’d have more options. Talking to family and friends about what I was going through really helped too. The people that really care about you will work to keep your needs in mind or try to do something to lessen the burden that you feel.

I am grateful because it has taught me to be more appreciative of what I can do and the foods that I am still able to enjoy. Can’t really do much about the poops though, except be kind to my body and talk about them

Changing As A Person

I’ve become more reserved and less dependent on other people, I put much less energy into making friends in person. Making and maintaining friendships online works much better for me since I am not always able to be physically present at school or wherever.

At the same time, I am more in tune with the emotions of the people around me. For me, having special circumstances of my own has helped me to become more understanding of other people and what they may be going through.

I’ve also become more of an optimist than I ever was. I’m not always great at it, but having a positive outlook on life and being grateful for what you are able to do does make a difference. Lastly, it’s helped me to become a stronger person that is able to advocate for myself and others.

My Favourite Superhero

Jessica Jones is my current favorite. Her emotional and physical strength is inspiring. She pretends not to care about other people on the surface but deep down, she is a very caring and kind person. I admire her wit, persistence, and unapologetic personality.

Thank you Morgan, for raising awareness and sharing your story with my readers and me!

If you would like to stay up to date with Morgan, you can find her on Twitter, Instagram, Pinterest, and her blog, Visibility for HKPP!

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