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.

Sleep Apnea

I started snoring 4 years ago. At first, it was a very soft, barely audible snore. As time past, the snoring got worst. By spring this year, I was snoring so loud, it was keeping everyone in the house awake.

My general doctor sent me for a sleep apnea test. The first step was to wear an apparel that looked like a watch. It monitored my heartbeat and my oxygen level.

The results show that I had server sleep apnea.

The next step was to try a CEPAC machine for a week that monitored how much oxygen I needed to counter the sleep apnea and let me sleep. At first, I didn’t feel any change. I was still exhausted. I always wanted to sleep. I didn’t see how the machine was helping until I had to give it back. I then crashed. I wasn’t functional.

I now have my own machine and I love it.

Did you know that you cannot snore and dream at the same time?

Psychologists say that having a good laugh and a good night sleep are the best cures for anything. When you have sleep apnea, a good night sleep is impossible without help.

Many are afraid that needing a mask to sleep will kill the romance in the bedroom. Let me assure you that it does not.

What you don’t see

There is no true way to ever be fully prepared for hard times. Finding out that you have a chronic illness and that there is no cure is enough to send anyone into hard times.

I didn’t realize these hard times would shake me up and change who I was and the way I saw life, but they did. People who have Fibromyalgia don’t have a lifestyle change, they have a full on life change.

Fibromyalgia is one of the most common disorders of the musculo-skeletal system.

Generally, analgesics and anti-inflammatory medication are prescribed to treat fibromyalgia. My problem is that I’m allergic to anti-inflammatory medication, so that treatment is not an option for me. Sometimes antidepressants can also be prescribed as the chronic illness and the constant pain can make anyone struggle with depression. I know I do. I became physically, emotionally, and mentally drained.

What you don't see - #FibromyalgiaEven the most mundane task may seem overwhelming when your body and mind are processing a situation. Great changes started happening as one part of life was ending (the healthy abled-bodied life) and another was beginning (living with multiple chronic illness, including Fibromyalgia). During time of changes, hearts and minds are evolving from this experience and that is transforming how we see the world around us.

I can’t go shopping alone anymore, not even to the supermarket. I need someone with me in case my body seizes up on me or in case my legs stop working. I need a wheelchair if I go shopping for more than a quick in and out.

I have to sit to blow dry my hair because I have no strength left in my legs to stand and in my arms to hold up the hair dryer. Sometimes I just sit for half an hour waiting for my body to be ready to be dried off.

I need help to get dress, because it’s too painful and my body doesn’t move freely as it used to.

Throughout the day I’ve had to take multiple medications in order to make it through the day. I even need a pain and sleep pill to make it through the night. I also need a special CPAP machine to sleep as I have severe sleep apnea. I have an application (SleepStyle) that tracks my CPAP performance and my sleep patterns. It’s hard work trying to get a good sleep. I’m feeling fatigued and constant stiffness, especially in the morning.

I have lived with ever-present pain, spasms, twitches, muffled thoughts for approximately 3 years and will do so for the rest of my life.

My words that are often lost. I constantly struggle to concentrate and remember things.

I can do a little bit, then I have to rest.

My husband prepares the meals most of the time. I use a bench in the kitchen so I can rest while preparing food. I tend to drop things. I can’t pick up things with oil or boiling water, because there’s too much risk of my hurting myself.

It is disappointing because that’s not the mother I wanted to be.

It’s hard to think positively when you’re constantly in pain and constantly depending on other people.

What keeps me going through is my amazing family. My parents, my husband and my kids. They all motivate me to want to keep going.

Unfortunately, we cannot force someone to respect us. We cannot force someone to admit they were wrong or apologize. Only they have the power to shift their perspective.

I’m fatigued not tired

When you are tired, you can get sleep and feel better.

Fatigue is still there when you wake up. Fatigue is when you wake up more tired than when you went to sleep. It stays with you all day. It’s lack of energy, a feeling of mental, emotional and physical exhaustion.

The pain never goes away. I’m feeling fatigued and constant stiffness, especially in the morning. I am constantly plagued by headaches.

My legs twitch and keep me from my sleep.

Fatigue is when you’re so fatigued you could sleep for a week, but your body also hurts too much to let you fall asleep.

Insomnia sees me to sleep the day away (when I can).

During the week, working leaves me with not much left to give to my husband and kids.

 

Understanding migraines

A migraine is characterized by headaches that can be very intense and last from four hours to several days. Headaches are often accompanied by nausea, dizziness, visual disturbances and hypersensitivity to noise or light. During a migraine your head throbs, and you may feel sick to your stomach and throw up. Some people are so sensitive to light and sound during a migraine that they have to turn out all the lights and lie down in a darkened room until their headache goes away.

I once had to be driven back home from work because my migraine got so bad I became blind.

In cases of a chronic migraine, seizures take place more than 15 days a month. That’s definitely my case. I have miracles pills that help a lot, but I still have to take them regularly. If it wasn’t for them, I would be able to function.

Migraines affect about 850 million people. This is one of the most incapacitating conditions in the world.

Sleep apnea (which I also have) also causes migraines. The most obvious connection between sleep apnea and migraines is related to stress. This is very obvious for patients who suffer from obstructive sleep apnea since they wake up numerous times each night. Insomnia leads to irritability and ultimately stress, which is the most common migraine trigger.

Between 50% and 70% of people with fibromyalgia get headaches, according to The American Fibromyalgia Syndrome Association.

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