Let’s start with an update! Today (Sunday) was an amazing day. I woke up this morning and was able to do a full 30 minute workout…wait for it…STANDING UP! Now, for all of you healthy people reading this, that’s not a big deal…for those of you who have POTS, you know what a big deal that is. Doing an upright workout can be absolutely excruciating. It can reek havoc on my body because I cannot control my heart rate or my blood pressure. During the past 6 weeks I’ve had some major set backs with my health. It’s just been one bad day after another, after another. Could this be because I’ve started my Lyme treatment and it’s supposed to get worse before it gets better? Let’s hope so! 😉 For whatever reason, today was good!
Now, on to the point of my post! Since I’ve become sick, I’ve also had to become a different person. It may sound cliche, but it’s really true. Gone are the days of the carefree lazy Saturdays, the piling into the car and going where the wind takes us, and the old “I can do anything I want” attitude. Now my life is minute by minute symptom management. “Do I have all my pills?” “Where is the nearest chair for when I need to sit down?” “I can’t commit to doing that, I have no idea how I’ll feel that day…” “How many sick days do I have saved at work because I can’t function today!” My mind is cluttered with these thoughts. Depressing? Yes. Discouraging? Yes. Pain in the ass? YES. But, in a way, it’s given me some amazing insight, and I thought I’d share them here.
YOU HAVE NO IDEA WHAT’S GOING ON INSIDE SOMEONE ELSE:
I’m the master of this one. I can plaster on a smile, comb my hair, throw on some make up, and look pretty normal. People tell me all the time “I keep forgetting that you’re sick!” In a way, that’s what I’m going for. It’s bad enough to be sick on the inside, I don’t want to look like train wreck on the outside! This has effected the way that I look at other people. I have absolutely no idea what’s REALLY going on inside someone else. I try to approach people with a little more understanding and compassion. It’s really important to dig a little bit deeper to really see what’s going on. Being a high school teacher this has come in especially handy…high school girls (and boys too) really need someone to look past the surface.
TAKE EACH HAPPY MOMENT AND RUN:
Another cliche, I know, I know…but I mean it! Every good day is one to savor. Lately I’ve been having some really low days (see my last blog post for greater details) so when I have a good day, I want to soak up every. single. moment! Today was a great day, so what did I do? I went to my son’s hockey practice and cheered my heart out, I cleaned my house, I made a snowman, I snuggled my daughter, and I reminded myself every second that this might not last, so make it count. Being sick there are no guarantees that a good day will happen again tomorrow…or this week…or next week…or next month! Having a symptom free moment, a moment when I feel like the old Samantha, they are so rare!
DON’T HATE YOURSELF WHEN YOU FALL:
To couple my sentiment above, the good moments will come, and the bad ones will too. The trick here is to not totally hate yourself when the bad times get the best of you…because unfortunately, this will happen. It’s impossible to not get down in the dumps.
LOSE THE DEAD WEIGHT:
You need to protect yourself, and that means losing the dead weight in your life. You need to move past the people that pull you down. The negativity isn’t worth your time. Being sick is stressful enough. You don’t need to have people around you that make OTHER situations stressful. The most important thing is your health and wellbeing, and that includes your mental health too. This is something that I have always had a hard time with. I never want to upset anyone, so removing people from my life was always a challenge…and then I got sick! Now, it’s easy. I just don’t have the time or energy to focus on anyone else’s crap. Selfish? Maybe. Necessary? ABSOLUTELY! Another subset of people that I’ve discovered need to take a hike, are those that only want to control your illness. There are people that will tell you “oh, you’re still sick? You really need to just drink more water” SERIOUSLY?! I’m not talking about the people who offer help, provide resources and advice from a place of genuine caring. I’m talking about the people who are annoyed that you’re still sick and think there there is an easy obvious answer that you’re just not doing. Bye bye to those people! 😉
LAUGH AT YOUR BRAIN FOG:
This one may be specifically to me, but this has been an important one! Brain fog is the total lack of function in my brain sometimes. When I know I want to say a certain word and I can’t think of it. When I can’t think of someones name. When I say the wrong word and I don’t even notice. In everyday life, this is such a pain in the ass. It makes me feel crazy, stupid and like I’m losing my mind (and I may be…who knows!). So, what I’ve decided is, just call it what it is and laugh it off. People who spend a lot of time with me know what I mean when I say “POTS brain” or “Lyme Brain”…all you can do is laugh. For example…when I was cleaning the bathroom my 5 year old came in and said “I need to pee!!” but I hadn’t rinsed out the toilet yet…so, as I was scrubbing the bathtub I said “quick, go in the other bathroom and use that tub” to which…he did. Yes, he followed my directions and peed in the other tub. Great. Or when my 2 year old asked me to get her a diaper for her baby doll because she was “so stinky”…I walked into the bathroom grabbed a maxi pad and handed it to her…so she unwrapped it and used it! Imagine my surprise when I woke up and saw that her American Girl doll had on a pad. Oye! All you can do is laugh…but I’m totally sure my kids think I’m nuts.
This just may be the most important lesson I’ve learned so far. You know yourself. You know your body. You know when something is wrong. TRUST THAT. Don’t settle for “oh, everything looks okay, the labs are normal” If you know something is wrong, keep pushing. If medicine isn’t helping, keep asking for a change. If your doctor doesn’t know what you’re talking about, find a doctor who does. Don’t worry about being “mean”worry about advocating for yourself….or at least let others advocate for you (thanks Mom!). The health care system is set up to make money, make SURE that you aren’t just another dollar. You deserve to get the best care and to get better.
KEEP THE GOOD ONES CLOSE:
Keep yourself surrounded by people who love and support you. Hug them, love them, and be honest with them. LET THEM HELP YOU. Don’t fight this battle alone, it’s too exhausting. You have to let them carry some of weight with you. That’s what friends and family are for!
Well, that’s all for now. I hope on my next weak day I can look back to this post and rejuvenate myself. There has been some good to come out of this hell. I like the person it’s made me become. Now, if I could just be this person…but be healthy too…I’d have it all!