"It's okay. I'm used to it."

As I was sitting in the doctors office one day last week, with a tourniquet around both of my wrists, willing the veins in my hands to show themselves so the lady could take my blood, I said something that I haven't been able to stop thinking about since. The lady was tapping my hand to get the veins to come up, and she apologized for having to work so hard and poke me so many times to get my blood. And, without even thinking about it I said "oh it's okay! I'm used to it." 

My intention in saying it was to try and make the poor lady feel better. She was the second person to be called in to try and get my blood, and she was struggling--at no fault of her own, at total fault of my veins--and I felt bad for her. I always do. I find myself apologizing every single time I have blood drawn because it's never an easy task for anyone involved. But, what really bothered me was the truth in what I said to her. 

"I'm used to it."

So often I brush off something that is happening or something that I'm feeling with those words. 

"It's okay. I'm used to it."

But, it's not okay. It's not okay to be used to pain. It's not okay to be used to fear, especially when it's fear of your own body. 

It's not okay to be used to waking up anxious, waiting to open your eyes to see if your head still hurts. It's not okay to be used to feeling like your heart is going to pop out of your chest when you have palpitations that just won't quit. It's not okay to be used to the stabbing pains that go on a tour of your entire body every day, stopping at each joint along the way. ("And to your left we have the enlarged spleen in its natural habitat.") It's not okay to be used to feeling like the ground isn't under you when you stand up. It's not okay to be used to being afraid to go to sleep when you're feeling bad because you're afraid you won't wake up. It's not okay to be used to struggling to remember the name of something that you use every single day. It's not okay to be used to putting chemicals into your body. And it's not okay to be used to feeling like you're going to die without them. 

It's not okay for your friends to be used to you canceling plans on them time and time again. It's not okay for your family to be used to you having to go to the car during a shopping trip because the lights are making you sick in the store again. It's not okay for the people that mean the most to you to be used to you dropping off the face of the earth for a few days because you have to just sleep off the pain.  

It's not okay. 

And, I will continue to tell the blood draw lady that it's okay. I will continue to shrug my shoulders when I wake up with a headache still because, 4 years later, I am used to it. I will continue to tell you that I'm okay with missing out on yet another family function or another day with friends, because it happens all the time. 

But, it's not okay.

Being used to being sick is not fair. And it will never be okay. 

Do's and Don't's of being a person with Lyme.

I have found myself getting really frustrated and confused lately by some things I have been told/have seen/have experienced in the lyme world. So I think it's time for a recap of things that being sick allows you to do vs. things being sick doesn't give you the excuse to do. 

Things being sick allows you to do:

1. Tell your friends, your family, and any other people in your life that you love, that you love them. Often. And sincerely.

2. Appreciate the little things. As cheesy as that sounds. 

3. Take the time to do what your body needs you to do--whether that's sleep all day, sit outside for some air even when it's 35 degrees out, or take 3 baths in one day. 

4. Relate to House episodes more than you ever thought you would. And be annoyed when they say something that's not right. Or when they give a medicine for something you've had that same medicine for and you haven't gotten better but they do. (And then get even more annoyed when you realize you're annoyed over a fictional character's health.) 

5. Really figure out who are you, what you want to do when you're better, and what really is important in your life. 

Things being sick does not give you the excuse to do: 

1. Beg for attention, ask for money all the time, believe that you deserve things handed to you. 

2. Give up on your friends. If your friends are willing to come to you, or do things that you are able to do with them, grab onto that and never let go. Not everyone is lucky enough to have the friends that stick around, so if you do, cherish it. If they're not giving up on you, don't give up on them. Yes they can't fully understand, but if they're still around they're willing to try. And that's worth it's weight in gold. (Or prescription costs. Worth it's weight in prescription costs.)

3. Be angry all the time. Sure, being sick is ridiculously frustrating. And I would be the biggest liar ever if I sat here and said I never got angry. I get angry for lots of reasons related to my health. But I also am really happy. I'm a really happy person 97.6% of the time. And that's okay. Just because I'm sick doesn't mean I always need to be a grump. And it doesn't make me any less sick just because I don't always dwell on how bad it is. The world isn't out to get you. You're out to get the world. And it's always worth the extra effort it takes to kick that anger and be happy. 

4. Think that you're so much worse off than everyone else. Because, maybe you're right. Maybe you are a lot sicker than a lot of people. But it's not a competition. I don't think any differently about you because you're less sick than me. And I wouldn't think any differently of you if you were more sick than me. I am me and you are you. It's not a competition. It doesn't do anyone any good to compete. 

5. Bring your health into ever single conversation ever. "The weather is beautiful today!" "No, it's 67 degrees. And one time when it was 67 degrees out I had this really bad headache and ended up in the ER because it was so bad because I'm really sick and I am on a lot of medicines because I'm really sick because I have lyme and I'm probably sicker than you and anyone you know and I win. I don't know why you like this weather." (Dialogue based off of actual events.) why? ...why? 

And, of course we all slip up. It's easy to get stuck in a lyme funk and not even care. But I just needed to throw it out there as a reminder.