Never Getting a Vacation From Your Illness – Even When You're on Vacation

I am currently on vacation in Tennessee visiting family. It is a welcome reprieve from life and the stresses in it. We have not had a true vacation in five or more years. This spring break for my girls is their first since entering the public school system. It is exciting to see their minds take a break and I admire, and am so proud, of how smart they are becoming.

One issue I am having with this vacation is me. I am finding myself not being able to do the activities with others. I am in constant need of more breaks and rest stops. Sometimes I just need to stop and sit for 20 minutes as my energy levels are too low.

Chronic fatigue hurts.

This coupled with the pain I am constantly in makes it difficult to enjoy some of the exciting aspects of my vacation. I am having to accept the fact that I have more limitations on what I can do. This hurts more than I first anticipated.

Yesterday I went to a children’s arcade/play place with my two eldest daughters and my nephew. My girls had a blast running around in the playground area and climbing the inflatables. They wanted “dad” to run and jump and play. I smiled and did my best, but nowhere near what I felt I should be doing. It hurt me to tears not being able to play with my girls.

Today we went shopping. I was the only dad in the group of six girls so I ended up with both shopping carts and helped with the lifting and sorting. It was a morning that was already rough due to a fibromyalgia flare-up. I ended up sitting more often than not. I smiled a fake smile and pushed as hard as I could through the pain. It wasn’t enough and I felt terrible. I felt guilty at holding the group back, even though I knew I could do nothing about it.

It is a hard situation in the fact that I am suffering from a chronic illness, feeling that I am letting my family down by not keeping up, and then having the guilt and depression from all of it. Constant 24-hour pain and having some seasonal allergies pop up complete the horrid picture. I feel so tired of fighting.

And it’s not just the chronic fatigue.

I have been reviewing my condition and well-being these past few months. I have looked at my medication and doses and have decided that I am in need of an increase. I have been reviewing how much I have limited myself in lowering my dosage to not have to deal with the pending opioid crisis. I have talked with my doctors to lower it so they don’t think I have become addicted. I am slowly realizing that this is futile and I need to focus more on making sure that my needs are met.

Then there is the guilt from others at taking a vacation. Society seems to think that a disabled person can only be someone in a wheelchair or crutches, barely able to move ever. I have received, for lack of a better word, hate for doing activities that I love that I should not “be able to do” because of my condition. Just because I suffer does not mean I cannot take a vacation. Do we give up our right to happiness by having a condition that holds us back? This does not mean I get to take a break from my illness. I have suffered every day of my vacation. I do not get a break from my symptoms. Why must I suffer the feelings of others who feel the need to tell me that I must be faking if I go on vacation? Why add that to someone who is already suffering? It feels incredibly frustrating.

We try to live normal lives. We deserve to have vacations and enjoy life when and where we can just like everyone else.

Getty Image by corolanty

Find this story helpful? Share it with someone you care about.

Related to Fibromyalgia

fibromyalgia and pregnancy

How I'm Managing My Fibromyalgia During Pregnancy

Since I was diagnosed in 2016, I’ve struggled daily with widespread pain, brain fog, anxiety, migraines, IBS, skin sensitivity and sleepless nights. Living with fibromyalgia was never easy before I conceived and I knew it would continue to challenge me during my pregnancy. Similar to my arthritis, the first 12 weeks of my pregnancy were [...]
woman standing by a window and drinking coffee from a blue mug

7 Coping Techniques That Help Me Live Well With Chronic Illness

Like many others in my situation, I’ve had to learn how to live with debilitating illness. Fibromyalgia, severe osteoarthritis and inflammatory arthritis (that includes lupus, rheumatoid arthritis and psoriatic arthritis) have all influenced how I live. Here is a list of things that help me live well. 1. I chill. I have a tendency to over-react. My family would [...]
black and white photo of a woman looking away, and a photo of two overflowing laundry baskets

16 Honest Photos of the 'Embarrassing' Sides of Fibromyalgia We Don't Talk About

When you live with a chronic condition like fibromyalgia, oftentimes there can be some frustrating, undesirable and “embarrassing” symptoms that accompany your illness. Although there’s no reason to feel ashamed of any symptoms or side effects you experience, it can still be embarrassing when brain fog causes you to forget your best friend’s name, or pain [...]
woman in pink and blue plaid shirt talking to a male friend

How Fibromyalgia Affects My Relationships With Friends and Family

From the outside, a person with fibromyalgia can be many things. To complete strangers who happen to see me on a good day when I manage to set my hair, pick out proper clothes and apply some makeup, I may look no different to any other healthy person. This probably explains the disparaging stares from strangers [...]