Managing Time is the Key

If you have APS, managing everyday of your life is crucial. I'm not saying everyone else's lives aren't busy, but we have our daily lives plus working in time to take care of ourselves. Everyday we have to go work out, try to reduce stress, and we also need to make time to massage our body if we're in pain.

As a freshman college student I have taken on a lot of responsibilities in the last few months and has put my APS out of wack. Trying to juggle going to class, homework, my health, my APS, and a social life is a lot to put on one plate. At first I didn't have too much to worry about, but then things got busy and I got sick..

Even when I am sick I have to manage my time and make sure I get everything done. Which this can be very stressful because when I'm sick all I want to do is sleep. When I sleep a lot, I tend to become extremely stiff and cranky!

It might sound easy to avoid a few of those problems by not getting sick, but let's face it no one can dodge that bullet.

Now that I am getting over the sickness I have to catch up on all of the homework I have put off. And I decided to spend all day Saturday doing homework in my bed. Bad idea. I thought my neck, back, and hips were stiff before.. I was wrong!

I did a bad job at managing my time this past week, and as you can read, I am paying for it now. This is a learning process for anyone with APS.

"It's Just in Your Head"

Everyday I struggle to get out of bed, I struggle to sit still in class, I struggle to stay on task, and like I have said before my chronic pain is NOT curable. Patients with APS or any chronic pain conditions have to deal with it everyday for the rest of their life because sadly it will probably never go away.

I have mentioned before that I have had chronic pain since I was eleven years old, and I am currently only eighteen. So being told that I will have to deal with this pain the rest of my life is impaling. Almost my whole lifespan of being in pain sounds terrible.

But what is even worse is most people don't even realize there is actually something wrong, APS is a condition that doesn't have physical appearances of pain. So when you see someone who looks completely normal that doesn't mean they aren't in pain. Chronic pain is very different, you can't see what is wrong, and most of the time if you ask someone how their pain is that day they won't truly tell you how they feel.

For instances, whenever someone would ask me how I felt that day; I was embarrassed because I didn't want to worry people or even annoy them with the sob story of always being in pain.

Chronic pain is real and a hard process to overcome for anyone of any age. Even though, I look healthy for the most part; you can't see the daily pain I go through. I ask all of my readers, that are not struggling with chronic pain, to try to understand that just because you don't see physical problems doesn't mean we are faking it.

Growing up, sometimes, children like to fake being sick to stay home from school. But when you are stuck in bed unable to move for days at a time.. There is something more going on than just a lazy child, and much more than the pain is "just in your head."

Please, try to understand that we have to push ourselves to do simple tasks that seem easy to a healthy person.

What is sleep?

Sleep can be difficult sometimes, this picture came from getreal4health.com

Sleep can be hard to come by some days because of being uncomfortable. I personally have a hard time sleeping because I can't sit/lay still for too long or else I get stiff. Even during the day I have to constantly be moving or I will have pain flairs.

When you sleep, laying still is normal but if that causes pain what is there to do? I have found that using a neck supporting pillow helps a lot. With my neck supported I wake up with less pain and I can function more in the morning.

Everyday I am constantly popping my fingers, neck, back, hips, ankles, you name it and I probably pop it! So sleeping with the neck pillow, for some odd reason, it helps me reduce pain.

As I have said before in a post, every person's APS and treatment is unique. Everyone affected has to find what works for them and just do it. No matter how crazy you might look sleeping with a neck pillow or massaging your skin in public, just do it.

Whatever works for you is what you need to do to control your pain so you can sleep.

New Locations of Pain?

If you have read all of my previous posts, most likely you've gathered that APS is a crazy condition. This condition has no limits, it does what it wants when it wants.

Reading the title to this post might have you a bit confused, well here is your explanation: APS can advance to new places in the body. Whoa, weird! Yes, there can still be pain in the original location but new painful spots can surface. 

So the fall of 2014 I started having gallbladder attacks, which one wouldn't think is related to my APS. I went through weeks of attacks, rarely eating, and numerous doctor visits. I had an ultrasound just to check out my gallbladder, then we moved onto a Hepatobiliary (HIDA) Scan. 

This scan is primary to test the functioning of your gallbladder, the nurse injects radioactive bile into the arm and you are put in a special nuclear medicine scanner (gamma camera) that traces the bile through your body.

Doctors look at how well the bile went through your liver, gallbladder, and small intestines to determine if your gallbladder needs to be taken out. Just the test alone lasts one to one and a half hours, but the whole appointment is two to two and a half hours.

Luckily, I went through almost a month of hell before they realized my gallbladder works decently. So I didn't have to have surgery!

After that, my primary care physician knew to call Children's Mercy Hospital in Kansas City to ask if all of my symptoms where APS related.  Lo and behold it was JUST my APS and I was so happy because I knew how to fix that. 

As demented as it sounds, APS can progress to new locations in the body. 

Needing a Good Laugh...

APS is unique to each individual patient, and doctors have to figure out what to do to fix the problems. The cat picture above probably looks out of place, but I went through muscle spasms ALL the time before we actually knew what was wrong with me. Of course medicine like muscle relaxers didn't help at all, because medications do NOT work for APS symptoms. 

I recently came across this blog Chronic Illness Cat and laughed so much! I wish I would have found this blog when I was at my worst and needed a good laugh. 

Going through this blog, as someone with a chronic illness, makes me laugh because I can actually relate. Even if you do have a chronic illness, I highly suggest checking out this Tumblr blog to get a chuckle if you're having a bad day.

Support Throughout the Journey

Photo Taken by: Bayli Milleson

This is my momma, Cathy, she has supported me through my best and worst days. As y'all have read, I was somewhat of a problem child growing up with my APS kicking my butt.

APS is a difficult thing to go through, especially as a child/teen. Not only is your life becoming busier, but also being sick (with who know what) all the time on top of that and it's a lot harder if you don't have someone that's there for you when you're down.

I was not a pleasant teenager when I was heavily medicated and still in pain. So if you have someone who will STILL put up with you during all of that, you have yourself a wonderful person.

My mom was the one person that showed her love for me in many ways. Anything from the little things such as getting be a route 44 green apple slush from sonic when I had a migraine to keep me hydrated. Or sleeping on a rock hard couch for four nights/five days in a hospital with me. These were the toughest times in both of our lives.

Rarely we had a good laugh when I was so loopy from a medication that I would speak Spanish to her, or see a monkey in a wood door.. I can't imagine what it was like taking care of me because I'm not always the nicest when I'm in pain.

But once we knew I had APS, every morning I didn't feel good she would say "Bayli, you have to get up because you know if you don't you'll only get worse." Just by her telling me this I knew I couldn't give up, and I knew I couldn't let APS conquer me and control MY life.

Having a support system when you have APS is very crucial, on your lowest days you will need someone to pick you up. It might sound silly, but having someone there for you really helps. Whether it be they make you stick to your plan to work out, or just listen to you vent about how crappy you're feeling that day.

My momma is my support system and the one that inspired me to do everything I could to get better.

Massage Therapy/Desensitization

Massage Therapy, as most of you probably know, is getting massages wherever you are currently in pain. But desensitization is rubbing, patting, tapping, etc. area(s) that are painful to retrain your nerves.

When I say retrain your nerves, I mean doing anything that causes you pain until it doesn't hurt anymore. Crazy? Yes, but by desensitizing yourself it tells your nerves that you shouldn't be in pain.

So there are all types of massages, the most effective way for me it just to get comfort out of it. I had a great masseuse, but then she had to move away. I ended up trying out a new one, but he tried to get EVERY single knot out in my neck/back. I was in tears and in worse pain than I was when I walked in the door.

Once you know which way helps you in the long run make sure to tell your masseuse, trust me it'll save you from a lot of pain. And that doesn't just go for people struggling with APS, I suggest talking to your masseuse so he/she knows what works for you.

Now, desensitization needs to be done at least one hour a day. The best thing to do is break it up into six 10 minute sessions. It might not be possible to always break it up into smaller times, but you have try your best.

Since I have pain in my head, neck, back, and hips I couldn't always reach the places I was in pain. I had my mom, dad, and friends help me out whenever they could because I couldn't do it all by myself.

But I was constantly rubbing the back of my head/neck in this position:

Credit to http://images.wisegeek.com/a-boy-covering-his-ears-and-neck.jpg

Although, when my APS resurfaces I go workout, reduce my stress if possible, and massage the heck out of the places I'm in pain.

APS is a crazy condition, but I am glad I finally know how to treat it and now so do you!