Monday, May 19, 2014

It's May again! {+a day in the life.}

Life has been crazy between school, appointments, hosting a huge rummage sale, and so much other stuff. There are some major changes happening soon in my life, trips to look forward too, classes to get done, etc. It seems non-stop.

But the thing is, there is something that is not changing no matter what is going on. Something that doesn't give me a break or wait until I have extra time. It doesn't care what I have going on, and is always reminding me that it's always there.

My health. Or lack there of. The nasty little buggers that I have living inside me. The Borrelia burgdorferi bacteria, aka Lyme disease. And many nasty co-infections that can be just as brutal as the Lyme itself.

May is Lyme Disease Awareness Month. I blogged about the basics of Lyme disease last year, you can find those posts here. This year, I want to focus on prevention, diagnosis, and awareness.

Prevention, so you don't get bitten in the first place. Diagnosis, so you know how to recognize the early signs and so you know what you have if you are already sick. And awareness, so you know how serious of an epidemic this is, and how much people with Lyme truly suffer from one tiny tick bite.

First, awareness, so you can understand why prevention and diagnosing are importing.

*Please understand that when I tell you about my illness, I am not looking for sympathy. I'm not asking you to send cards or feel bad for me. I'm not complaining or ranting. I simply want to you understand. And you probably will never be able to fully, unless you've lived it, so I will be honest and want to try and give you an idea of what it's really like.

Being chronically ill is TOUGH. Plain and simple. The exhaustion, the struggle to live your live, the pain, never ending pain... it's not fun. It's not a walk in the park. It's not take a certain medication and be better in a few weeks.

Here's a day in the life through my eyes. Right now, I am "herxing". The herxheimer reaction is a healing reaction that patients with Lyme experience. It is basically your body reacting to the toxins released by the dead bugs that are being killed during treatment. It's good in the long run, but it's brutal to go through, and it usually lasts from 2 days up to a week. Detoxing and cleansing your body is very important during herxing as your body needs help to get all the toxins out.

Anyways, all my symptoms have flared big time, and I am in a lot more pain than normal. Saturday morning as I started to wake up, I could literally feel the pain level go up the more I woke up. (Mom, this would be part of the reason why I don't like to wake up and always try to go back to sleep!)

My knees hurt so bad I could barely walk down the stairs, so I popped some ibuprofen to take the edge off before my friend Rachel and I took my siblings the park. (Trip planned around other things, wasn't an option to cancel.) I was grateful that there was a place I could sit as I was playing with the kids. And yes, some of us wore winter coats... that's Wisconsin for you!

Saturday afternoon, I tried to do school, but my brain fog was too bad and I couldn't remember anything I had just read, or concentrate enough to read it. So I gave up and read Facebook and crocheted instead. Except my wrists hurt enough that I had to keep taking breaks.

Saturday for dinner, we had take out pizza as a treat. As I'm on a STRICT diet, I didn't have any, and heated up some frozen Paleo crockpot veggie chicken instead. I took my handful of supper meds with it. But just the smell from the pizza made me sick to my stomach and gave me a awful headache.

Saturday night, I got a little bit of school done, and then decided it was late, I should take a bath, and then shower for church.

The water was way too hot as I got in due to my temperature sensitives. After I adjusted to it, I laid there for about 20 min and then I started overheating and sweating really bad (which is a miracle in itself as I NEVER used to sweat and it is important for detox). My head started throbbing, my heart started racing, and I got super dizzy. It's happened before but not until I've stood up after a bath. I let the water drain and just laid there, knowing I would pass out if I tried to get up.

Ten minutes later, I got out of the tub, but had to sit back down right outside the tub as it got really bad again. I took my pulse... it was 120-130, and normal resting for me is 85. So not good. I sat there for a half hour before I finally was able to stand up for 2 minutes to rinse off. Then I clutched the wall for the ten feet back to my room. I turned the fan on high, and grabbed some calming essential oils that I have by my bed for my heart. An hour later I finally fell asleep.

Sunday morning, I was weak, and still in pain, and almost didn't go to church. But I did, because that's what we do when we have a chronic illness. We press on, even when our bodies want to stop. We can fake a smile so well that no one has any clue about the pain that lies beneath. We choose to carry on with a pretty normal life, because the alternative is to be bedridden. We hide the pain because we have learned to be strong.

This Saturday was one of my bad days, but I usually have all the same symptoms I mentioned on a "good day", plus more, just not as severe. And with the exception of sitting on the bathroom floor, I'm used to it. I except them for what they are and usually don't think a lot of it. Because, right now, they are part of me, part of who I am. Lyme disease doesn't define me, but that doesn't change the fact it's in me and controls my life sometimes. I have to deal with that because I don't have a choice. I have to be strong, so I'm not crying and complaining all day. Whatever doesn't kill us makes us stronger, right?

Our lives STINK. Being in pain all the time is HARD. It's no fun, and often there's not even an end in sight, no matter how many years away.

THIS is why awareness is important. Not only do we need to prevent other people from having to go through this, but we need cures. Because this is existing, not living.

My body is broken. I don't want to live like this. I don't wan't others to have to live like this. And I don't want anyone who doesn't already live to this to have to experience it.

Awareness is important.

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