Monthly Archives: August 2014

11 Ways to Show What it’s Like to Live with a Chronic Illness

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Do you really want to know what it’s like to have a chronic illness? No sugar-coating? Okay, let me tell you.

  1. The amount of pills I had to take today to just get by? 27 pills. No, they aren’t pills that make you high. That’s how many I have to take to even make it to my so-called normal. I am not a druggie.
  2. When was the last time I did my yoga (the exercise I love so much)? I can’t tell you. Between my energy levels and having procedures, it’s been a while. I made it up to a headstand before I had to stop doing yoga. No, it’s not just something that I can push through. It’s either spend my energy on yoga and relax the whole day or take care of my husband, child, and our home.
  3. When was the last time I didn’t have to take a break when walking up or down stairs? That’s a good question.
  4. Why is it hard for people to believe that I’m sick? I try to hide it as much as possible. It’s gotten to where I can fool everyone but my husband. If I let people see how I feel, who would want to be around me?
  5. Those looks you get when you have to use a cane and park in a handicapped space? Yeah, those are lovely. I’m 25 and sometimes move slower than someone who is 50 years older than me.
  6. I sometimes have to sit or lay down in a grocery isle when I go grocery shopping. I promise, I’m not that kookoo for cocoa puffs to randomly lay in a store.
  7. Sometimes I have to run-ish to the bathroom really quickly at the store, because my colon picked a very convenient time to try to finally empty itself. Why is it always at the store?
  8. Pre-syncope (almost fainting, but not quite) happens all the time. I think full on fainting feels better than the almost fainting.
  9. I could barely move the last time we took our son to the zoo.
  10. My husband doesn’t want to go see different places, because he knows I’m going to get tired and have to just rest for who knows how many days afterward.
  11. Because of a feminine problem and fibromyalgia and neuropathy, I’m in pain all the time. Here’s the kicker, even morphine given through an IV doesn’t affect me.

But I still fight to be there for my husband and son. I take care of my son, because I take care of myself. It’s so hard some days, but it’s so worth it. Who said life on earth would be easy? Life is work and life is hard, deal with it. We all have a cross to carry, and this is mine. A lot of people with illnesses milk it, but most of us don’t and won’t do it. I don’t need your sympathy, I need your understanding that sometimes I just can’t do things. You don’t need to know everything wrong with me, just know that I need a rest sometimes. I cannot do it all.

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Allergic to Gravity

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Allergic to gravity – it’s one of the simplest ways that I can explain my type of Dysautonomia. Yep, I still have it. It’s still there like acne for me, it just won’t go away. Isn’t that nice? Well, I decided to write a list of some funny things about this illness. So, here you go.

  1. We are allergic to gravity. Seriously. Gravity hates us. It just pulls us down.
  2. We can salt it up, dudes. Yep, the more salt the better. Yet McDonald’s never seem to get that I’m serious when I ask for the salt packets. It wouldn’t be so bad if they actually salted their fries. That’s why I get the food in the first place. (I mean, c’mon. Is it really so hard to get salty french fries when I pay for them? These people.)
  3. We’re so talented we can wake up with a hangover without even drinking. It’s awesome opossum.
  4. We’re so lazy that we can fall down on the floor as soon as we get out of bed. Sleep is a priority after all. Who needs life when you can just lay on the ground?
  5. We can’t really go on roller coasters, but we at least get the sensation in the car. Say what?
  6. We usually get to have so many other medical problems with Dysautonomia. The more the merrier, right?
  7. We’re running a marathon inside our bodies all the time without the added benefits of actually running a marathon. It’s so great.
  8. We drink so much water that we might as well be mermaids….just hopefully a bit more clothed.
  9. We take so much medicine we should at least all be honorary pharmacy technicians. I’m just sayin’.
  10. We have to go through so many procedures and med trials and side effects that we should have our own comedy show. I know I get even more goofy with certain things. And dizzy. Really dizzy. Hey! How did that wall get there?
  11. Automated blood pressure machines have nothing on us. Our vitals change so quickly and are so odd that the machines won’t register them. Now that’s talent.

What other things can you think of to go on this list, my fellow heartbeaters?