Don’t judge a book by it’s cover

I’m pretty sure you heard the adage “Don’t judge a book by it’s cover” before. Most of us apply it’s wisdom in many different situation, but when it comes to invisible illnesses those words are often forgotten.

Invisible illness
Don’t judge a book by it’s cover.

Although I might look great today, remember that pain is something you can’t see and each person feels it differently. You cannot judge someone’s pain by their image or appearance.

Chronic pain and chronic diseases are often invisible. I’ve experienced firsthand on a number of occasions just how cruel and intimidating people can be, when they feel they have the right to challenge my invisible illnesses. Or how clueless others can be when they come to you about their regular aches looking for support as if it compared to an incurable disease and excruciating pain that never goes away.

What they don’t get is that the bad parts, the pain, the struggles, all that stuff goes on privately. Just because you can not see it, does not mean that I am not in pain.

I choose to fight for my life. Not just to survive, but to live. That is, by far, the hardest battle.

Flareups can cause an anxiety attack

The only thing that’s certain about fibromyalgia is that it’s unpredictable. When you have flareups of symptoms it can cause you to have an anxiety attack. It can make you feel like you are choking and shaking all over and every touch feels like you’ve been hit by a baseball bat.

What can cause flareups?

There are numerous things that can cause fibromyalgia flareups and sometimes it’s impossible to figure what happened. Here are the top 5 things that cause flareups:

  1. Menstrual periods;
  2. Change in temperature;
  3. Stress;
  4. Sickness, such as a cold;
  5. Activity.

Why does flareup cause anxiety attacks?

I personally get anxiety attacks because I fear the consequence of a flareup.

  • Will I lose my job because I’m taking another unscheduled day off?
  • How bad is this flareup going to be?
  • How long will this extra pain last?

I try to meditate and calm my breathing. I try to remind myself that this is something that is happening to me outside of my control and not something that I am responsible for.

Why I can’t take public transport

I used to take public transport everywhere until I started battling multiple chronic illnesses. My struggle with my body and my health makes public transport inaccessible. You really don’t realize how inaccessible the world is until you need it to be accessible for you.

The transit system is failing its customers with disabilities and it’s even worst when you have an invisible disability. People look at you and think you are healthy and/or faking because you are lazy and want a seat. They don’t see someone who can’t stand or walk for very long. They don’t see someone who can’t hold themselves in place in a moving vehicle. If the bus or metro stops, my legs won’t hold me up. I will fall and hurt myself.

We shouldn’t be so quick to judge someone by appearance. Just because we don’t look disabled doesn’t mean our bodies are capable of much. Or that we aren’t in a ton of pain or feel so sick we almost can’t stand it. Many of us have just become really good at making it look normal.

Don’t assume that everyone who look healthy is healthy. Do not question someone who says they medically cannot do a task. That person is already struggling with guilt over what they think they should be able to do and it’s humiliating to be called out by strangers who don’t believe them.

Getting a cold when you have a chronic illness

I have a cold. It’s winter. It’s the season. Normal, right?

I also have multiple auto-immune illnesses. This means that I’m more at risk when it comes to getting sick. People who have chronic illnesses are more likely to experience complications such as pneumonia and even to be hospitalized.

Cold - Flu - Chronic IllnessI have a cold. Like all colds it’s affecting my nose, my throat and my lungs. I also have asthma, which complicates things when it comes to illnesses that affects my breathing. For anyone suffering from asthma, if you do catch a cold, asthma means your symptoms may be more severe. This is because you already have swollen and sensitive airways.

I have a cold so my nose and sinuses are blocked. This means that I can’t use my CPAC machine which helps me sleep. Sleep Apnea gives me migraines.When I take migraine medication, I need to sleep. I can’t sleep because I can’t use my CPAC. Do you see the the vicious circle here.

I have a cold. This triggers a flare up in my Fibromyalgia symptoms. My aches and pains are much worst than usual.

My goal is not to complain, but to show that getting a cold when you have one or multiple chronic illness is never just having a cold.

Don’t quit

No matter what is your situation in life, whether you are fighting a chronic illness or mental illness or both, life can sometime feel like a burden and each day can feel like a challenge.

My struggle often makes it a challenge just to get myself to work in the morning and it can feel as if each interaction is a struggle. Each word you speak is a drain on my supply of energy.

Like most people, I have a sense of accomplishment when I finish what I start. This used to be a lot easier before mental and physical health issues made a permanent home in my body. I am still fighting never give up never surrender.

“You might be sad because you’ve been through a lot, but you should also be proud of yourself for being strong enough to make it through it.” – Unknown

Working with Chronic Illness

I  work in a 9-5 or office environment. Working full time can take a lot out of you and that’s regardless of your health status. Many of us who have chronic illnesses are still working full time, whether we can afford to or not.

I used to be an overachiever. I used to take pride in being a great at multitask and thriving under stress. Things have changed drastically since I started getting sick and unfortunately, management don’t believe that these changes have to with my illness. After all, I have multiple invisible illness. This means that you can’t see what these illness are doing to my body. That you can’t see how much pain I’m in. That you can’t see how difficult it is to remember things, to concentrate, sometime it’s even difficult to see.

Working with chronic illnessI am worrying incessantly. I worry that I forgot to do something. I worry that people will complain about me again. I worry that my boss thinks I don’t take my job seriously. Employees in a demanding job are expected to deliver more than they can give and this increases their chances of acute health problems, so you see the problem here for someone who health is already an issue.

I worry that I’m going to loose my job. The main reason for stress at work for most employees is the risk of losing their jobs, so in that I’m not alone. I worry about paying bills. I worry about my health that seems to be getting worse regardless of all the steps and the medication I’m taking. I am constantly upset at night that I hadn’t completed my workload, that I haven’t done enough dishes, clean clothes.

I keep pushing on. In some misplaced way, I felt I owe my employer and my family. I feel I owed them a healthy employee, because they aren’t accepting the disable employee as I am now. Unfortunately, it’s something I can never be. I am too sick to be the employee that my employers want, but I’m not sick enough to get permanent sick leave and I need my group insurance to pay for the medication I need. I also need the paycheck to help pay the house and the food that my family needs. Guilt is driving me.

The problem is that the longer you stay in a job working for someone who stresses you, the greater the damage is to your physical and mental health. The harder I’m trying, the more energy I’m using, the sicker I’m getting.

As a society, “doing our best” has turned into giving too much and working until we have some kind of burnout or breakdown. That’s dangerous for anybody, let alone those who struggle with chronic illness.

Stop asking me if I’m cured

Having conversation with many family members and friends have become difficult because all the same questions are being asked over and over again. It has become clear that some people are unable to accept that I have multiple incurable chronic illness. Everyone thinks optimism is great, but did people ever ponder that maybe too much optimism can hurt you?

I’ve had to accept my situation in order to survive it. By expecting me to be cured and refusing to accepting that it’s incurable, you are not helping me.

  • Didn’t you just have a doctor appointment not long ago?
  • Do you really need to see a doctor so often?
  • Why does the doctor need to see you so often?
  • Why do you have so many doctors?
  • What is this doctor for?
  • When will you stop going to the doctors?
  • So are you getting better?
  • Did they find a cure?
  • Why is it taking so long to find a cure?
  • Why are you taking medication if it’s not to cure you?
  • I know someone who cut all gluten and got cured.
  • Are you sure they didn’t misdiagnosed you?

I have multiple incurable chronic illness. I have medication that need to be adjusted on a monthly basis and that for the rest of my life. No, they can’t just give me a prescription and send me home without follow up. Medication that affect with hormones have to be adjusted regularly because hormones levels are constantly changing, especially when you are a women about to enter menopause.

No, my thyroid won’t come back to life. It’s dead. That’s permanent. There is no way to make an impossible possible.

Yes, I really need to see a doctor. If I’m not careful or decide to go untreated, I will die. You can’t get your hopes up that an illness will magically disappear if you ignore it. No, I’m not at risk of dying, because I take care of my illness, take my medication, follow instructions from my doctors on food and exercise, etc. No, even if I follow everything perfectly, I won’t be cured.

I have many doctors, because I have multiple chronic illness and each doctor has a specialty.

No they haven’t found a cure, stop asking me every 2 minutes.

I’m not gluten intolerant. I took the test. It was negative. I am lactose intolerant and no, cutting lactose from my diet won’t cure me of all my chronic illnesses, but it does make my stomach feel better.

Yes, I’m sure they didn’t misdiagnose me. I’ve had countless test and still getting more. I’ve seen all the results. Just because my cousin has an illness, doesn’t mean I have the same one.

I wish the healthy portion of the world would stop being so optimistic and just accept that I’m sick.

For those who stay

Anyone who has been through illness (physical or/and mental) know that people tend to drift away. I’ve been living with multiple chronic illness and mental illness for a few years now. There has been many ups and downs. I am still walking along the journey, trying to figure it out, testing different treatment to see what works and was doesn’t.

Life changes when you are dealing with illness. Friendship changes. You can’t force people to stay in your life. Staying is a choice.

There is no point in chasing people. Running after people will now prove to them that you matter.

Thank you to all who have stayed with me through thick and thin.

Why I spend so much time on my smartphone

I spend a lot of time on my smartphone. I spend time on Facebook and games. Half the time it’s because I enjoy it, but half the time it’s because I’m too tired to do anything else, and I need a distraction from the pain.

Sometimes I  binge watch Netflix, YouTube, or mindless videos over and over, because I can’t stand to be with my own thoughts. I’m distracting myself from me. My phone has become a tool in my mental health and support for all of my health issues. Within reach are people who are going through the same issues as me and understand the struggles. It’s amazing how it can be a life saver to have someone to confide to when you are having a difficult day.

“At the end of the day, I’m a good woman. I’m not perfect by any means, but my intentions are good, my heart is pure and I love hard with everything I’ve got. And because of those things, I’m worth it. Always have been and always will be.” – An Empowered Woman

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