Special Abilities of Special People

Having a chronic illness is almost like having a few cool super powers. I have mentioned this before with past writings that our illness has made us almost hyper aware and sensitive to many sights, sounds, and smells. These abilities come at a cost of our illness but they are something that I hold on to as something that makes me special.

1. Hyper hearing – I have noticed that those of us with a chronic or mental illnesses can hear so much better than our healthy counterparts. We can walk around in the dark and hear our foot falls and know where we are in the room. We can pick up a pill bottle, shake, and know our medications by the sounds it makes. We can hear the pain in peoples voices that they are trying to hid. We can hear the stress, anxiety, and even sometimes someone lying to us. This comes at a cost of being hurt by loud noises, yelling, and other panic inducing sounds.

2. Super sight/awareness – We pick up on the little details. The person fidgeting in pain in the corner of the room. When someone being uncomfortable around so many people. The look in someone’s eyes as they fail to meet anyone’s gaze. We can feel the room and know the mood immediately. We pick up on the smallest changes in someone’s routine and are extremely observant to those we care about. The weakness to this is we often focus so much on other people we do not focus on ourselves as much. We also can be sensitive to light and awkward situations can cause physical pain.

3. Intelligence/wisdom – This one is a bit different. I know that brain fog can be our weakness but when we have a good day, our brains fire off like a super computer. We know we have to take advantage in those precious few hours of being able to think so we tend to work through all of the different areas of our lives. On the other side, when we cannot think or even move from the bed, we tend to stay quiet. This gives us time to think and mull over what is going on. By taking, or some cases forcing, time to slow down, we are able to thoroughly think through each situation. Besides the brain fog as being a weakness, you are also sometimes observed as “Not being sick” because you are too smart or have your life together. What they don’t realize is that we know we will forget things and we have a million reminders, post it notes, and other various systems in place to help us not forget things.

If you noticed, I put a weakness with each super ability. Just like all super heroes, we have our unique weaknesses. Those kryptonite are areas we should be aware of and knowing is half the battle.

These are just three different areas where we are super! I know there are others and please feel free to share those with me, I would love to read about them. I believe more knowledge is power in this regard and we need all the encouragement in world some days to make it through.

Now go and be super and remember, you are special just the way you are.

#hugaplushie everyone

Advertisements

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.