A Vacation, Part 2

Vacations are fun for a multitude of reasons. Being away from home, feeling special in public, and not having too many responsibilities. For someone with a chronic illness it has an unexpected side effect.

A vacation from yourself.

When you are at home surrounded by people who know you, there is a certain expectation. Those close to you know what you are going through and help out in the areas you are lacking. The flip side of this is they know how you used to be. They remember how you were able to do so many things. This can make things awkward when you are faced with an activity that used to be so simple but now is a task and a chore.

When in a new setting and with new people, there comes an easier understanding. You explain your condition and there is a moment of understanding (for the most part). You are able to be yourself a bit more than usual. You don’t have to hide behind the mask you put up when in pain.

Two main things came out of my vacation in this regard. First, you are able to truly look at yourself and see your condition in a new light. You get to be honest with yourself, in being honest with those around you. You get to see the amount of pain you are truly experiencing instead of trying to mask cover, or make excuses to yourself and those around you. This can be a harsh reality to face.

The second thing I realized was the effect of my condition of those close to me. I know I can get wrapped up in the misery of my condition and not see the reaction of those around me. Those around you are suffering from the loss of an able friend. A spouse who now has to pick up the slack. The brother who is not the superman he once was.

It is very easy to forget that our condition effects more then just yourself and your body. It touched the lives of all those who know you. The suffering reaches beyond your own body. The ones closest to you suffer with you. It is true we have to fight the guilt that is sometimes associated with not being able to do activities with love ones. I feel we tend to forget that those same loved ones are suffering as well.

Take a moment, all you chronic illness warriors, and reach out to those close to you and thank them. Tell them you love them and appreciate all the ways they help you. Remember, a vacation from yourself is not a vacation from those who love you.

#hugapony everyone.

 

A Vacation, Part 1

I am currently on vacation in Tennessee visiting family. It is a welcome reprieve form 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 to 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. Some times 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 no where near what I felt I should be doing. It hurt me to tears and not being able to play with my girls.

Today we went shopping. I was the only dad in the group of 6 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 its 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 at lower it so I am not considered in the “addict” category. 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 is 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 that 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 everyday 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.

#hugapony everyone.