Spoons.

Honestly I'm not sure how I've blogged this long without talking about the Spoon Theory!! This is such a perfect way to explain to someone what it's like to be sick, and have to pick and choose what I do or don't do everyday.

The Spoon Theory was created by a woman named Christine, who has an invisible illness known as Lupus. A friend asked her what it felt like to really be sick, and this was the way she explained it. And now the rest of us can be known as spoonies, and many awareness bracelets or gear have spoons on them...and this is why!

How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity? I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.

At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.

I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.

Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.

She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?

I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.

I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.” I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.

I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s “spoons”, but just think how hard tomorrow will be with less “spoons”. I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on “spoons”, because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.

We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.

When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.

I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared.”

Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”.

This I think is so great because it gives healthy people a very visual way to see how we have to make decisions every day, and how every little thing costs energy. Having to not count spoons would be an amazing luxury, but even if I never get to experience that on earth, I know in Heaven I will have an unlimited supply of them! That's what gives me hope everyday.

If you want to play a little game in which you are given a set amount of spoons and have to decide how to use them click here!

One Thing I Didn't Know

Continuing my (hopefully) post a day blogging in an effort to raise awareness for Invisible Illnesses I wanted to share a really awesome blog post a fellow spoonie has written.


First off, for those that don't know what a spoonie is - I can explain tomorrow! It stems from the Spoon Theory, and many of us with chronic illnesses who live by that theory are now affectionately called spoonies. :)


This woman has dysautonomia is well, so MANY things she writes resonate with me on a very real level. Since the theme this year for Invisible Illness week is "Just One", everday she is writing using the same theme, and her post yesterday was titled Just One Thing I didn't Know About Chronic Illness.


http://www.cranberryteatime.com/2014/09/just-one-thing-i-did-not-know-about.html


This is the link to her blog, which you should totally click around on, but I have also pasted some of the main parts of her post below.

I didn’t know just how hard and physically challenging it truly could be. I didn’t know how exhausting it was to do what appeared to be easy tasks.

 

I used to think that if someone had a wheelchair because of fatigue that they felt okay while sitting in the wheelchair. Now I know better. When you have a chronic illness, it can be absolutely exhausting to sit in a wheelchair.

 

I used to think that if someone was tired that they could ride in a car easily enough. You’re just sitting after all. That is resting, right? Now I know better. It takes a lot of energy and muscle strength to sit up, especially when dealing with turns and bumps in the road. When I was healthier I never realized how many muscles I was using to sit up straight in a car and not fall over when we hit a bump or turned a corner.

 

I used to think that if someone looked good and was smiling that they must be feeling well. Now I know better. It is possible to smile just because you are happy, not because you feel well. It is possible to smile even when you can hardly see because you are about to faint. It is possible to smile through headaches, intense pain, nausea, weakness, and fatigue.

This is so completely true! I feel like it's extremely hard for someone on the outside to judge me for being so completely exhausted when I've just been in my wheelchair for a long time, or riding in the car. I can't speak for all illnesses, but for dysautonomia we are always 100% fatigued. Not tired - there is a difference. I could sleep for 15 hours (yeah right!) and still wake up feeling like I haven't slept at all. I never get that reset or refresh button. And everything I do takes about 3x as much energy as a healthy person. So it may be just sitting up all day, even if I'm sitting, is exhausting.


I would like to think, as my fellow spoonie describes, that from the outside I look like a normal, happy person. That in itself some days takes an enormous amount of effort. If I acted like I felt all the time, no one would want to be around me!! So yes, many times I fake a smile and get on with my day like I feel great. There are occasions when I'm just too frustrated and feeling awful to fake it, but even then I try not to let too many people see that.


So remember today that looks can be deceiving. And the more you know about invisible illness, particularly if you have a friend/family member with one, the more you can try to wrap your head around what they go through everyday; and learn to be a better support for them.

 

30 Things About My Invisible Illness

In honor of Invisible Illness Awareness Week (Sept 8-14) I thought I would share 30 things about my illness! One of the biggest parts of awareness is education...so the more we share, the more people will be aware of what different diseases are like and what someone's story is.

1. The illnesses I live with are: Dysautonomia, Migraines, and muscle/nerve damage that happened when my birthmother was pregnant with me. To keep things simple, I usually just say I have “dysautonomia,” an umbrella term for dysregulation of the autonomic nervous system. This is the main thing I have to deal with on a daily basis. While my muscle/nerve damage is significant, it won't progress like dysautonomia can and doesn't affect me too much these days. 

2. I was diagnosed with it in the year: I was not officially and completely diagnosed until last summer, June 2013.

3. But I had symptoms since: I have had symptoms for as long as I can remember, since at least 8-10.

4. The biggest adjustment I’ve had to make is: realizing I physically can't do what people around me can, and having to make the mental adjustment that this is okay and I can do things my own way. 

5. Most people assume: Because I don't look sick that I'm not. Or if I'm in my wheelchair that I'm faking it because I can move my legs. 

6. The hardest part about mornings is: not focusing on my pain level and figuring out how that will affect my day. And realizing that my night of sleep did nothing for my level of exhaustion.

7. My favorite medical TV show is: House, of course!

8. A gadget that I especially appreciate is: voice recognition software. Although my most communicated with friends know that I often have misunderstood words on there when I forget to proof-read, it allows me to text and type without wearing out my hands.

9. The hardest part about nights is: I am always completed exhausted and have the hardest time both falling and staying asleep.

10. Each day I take just a couple vitamins and supplements.

11. Regarding alternative treatments I: will use those that are helpful for me, but massages have been the only thing that makes a difference - and even that is short lived so I don't do it often.

12. If I had to choose between an invisible illness or a visible illness, I would choose: obviously if I had to choose I would choose neither even though I have both. But God has given me this life for a reason...so it's in His hands.

13. Regarding working and career: I struggle a lot with being up and walking around for my job, but thankfully I am surrounded by supportive co-workers and most of the time can sit when I need to.

14. People would be surprised to know: that I am much more tired and weak than I appear to be.

15. The hardest thing to accept about my reality has been: not ever having a break from the pain and fatigue.

16. Something I never thought I could do with my illness that I did was: graduate with my masters (almost!) and hold down a job at the same time.

17. The commercials about my illness: are nonexistent.

18. Something I really miss doing since I was diagnosed is: I've been sick almost my whole life, so I don't have a "turning point" where I suddenly got sick. But as time goes on my endurance has gotten less, so I definitely miss being able to be as active as I was when I was younger.

19. It was really hard to have to give up: being as independent as I want to be. My memory has also significantly decreased and it's hard to remember things or when I forget easy words. 

20. A new hobby I have taken up since my diagnosis is: blogging.

21. If I could have one day of feeling normal again I would: I'm not sure I really know what "normal" feels like. But if I could have one day to have no pain or exhaustion I would do everything to be super active.

22. My illness has taught me: God has a much bigger plan for me than I had for myself. And sometimes that requires humbling myself and accepting help against my hard-headedness, to take care of the level of health I do have.

23. Want to know a secret? One thing people say that gets under my skin is: “Your life must be so hard/suck/be terrible"

24. But I love it when people: don't treat me any differently, and don't make me feel bad about having to modify plans or if I forget words/conversations or repeat something. 

25. My favorite Scripture that gets me through tough times is: "In the same way the Spirit also helps our weakness; for we do not know how to pray as we should, but the Spirit Himself intercedes for us with groanings too deep for words; and He who searches the hearts knows what the mind of the Spirit is, because He intercedes for the saints according to the will of God. And we know that God causes all things to work together for good to those who love God, to those who are called according to His purpose." Romans 8:26-28

26. When someone is diagnosed I’d like to tell them: I really understand what it's like, and I'm here if you want to vent. 

27. Something that has surprised me about living with an illness is: that people from the outside looking in have a lot of judgement and opinions about things they have no idea about. 

28. The nicest thing someone did for me when I wasn’t feeling well was: just being there, whether its physically or emotionally. A lot of times my parents will bring me food so I don't have to cook something. 

29. I’m involved with Invisible Illness Week because: they are not understood by many, and don't get a lot of spotlight. So many diseases people need to be aware and educated about, and those who are sick need to know they aren't alone. 

30. The fact that you read this list makes me feel: grateful.

There's more.

Hello people!

Something has been laying on my heart and I just feel the need to vent. I'm sure many of you have seen The Fault In Our Stars (TFIOS) or at least heard all the hub-bub about it. I know it technically was written for a tween audience and I am "too old" to be reading such books, and yes while the love story thing is a bit elementary, there are so many reasons this book is so close to my heart. No, I don't have cancer....but I am sick. And a lot of the struggles the characters went through I can so closely relate to, and I feel like it's not something people really understand.

Between that and a new ABC Family show, there seem to be a lot of shows about cancer, or someone's battle with cancer. And I am in NO WAY, AT ALL belittling the condition or saying it's not a devastating diagnosis - because it is - but I feel like so often people forget that cancer isn't the only sickness out there.

Despite my incredible support system and my brain telling me that I shouldn't care what people think about me, a part of me does. Even though I've been using my wheelchair part time for about 5 years now I'm still incredibly self-conscious about it. And even when I use it I feel like I need to not move my legs so people think I really need it - even though I can move my legs and really DO need it. People assume since I'm young and LOOK healthy that I'm just lazy and misusing a grandparent's handicap tag, when really it's mine and I feel the need to exaggerate my limp to "prove" it's legit. And it shouldn't be that way. So many people do misuse these things and it's caused a stigma that screws the rest of us. So many people are stricken with invisible illnesses, one of which is cancer, but somehow cancer people are the only ones that get "cancer perks" as they're called in TFIOS. Those little benefits that people let you "get away with" because you're sick.

TFIOS captures so perfectly the emotional and mental struggle we face in how we tell friends and family about our health and to what extent. Though my illnesses are not terminal, I still feel like a grenade as Hazel does, set to go off and destroy anyone in my wake. So I have a few close friends who know everything and I know I can count on, but other than that I keep the "collateral damage" to a minimum. I feel like I am a burden sometimes to my friends and family, and the more people I let in are just more people I could possibly hurt as a result of not being able to do things. And you also get the over zealous parent who overanalyzes EVERY situation or feeling you have - it happens. And I have to be real honest....there are days when I relate to when Hazel says "I just don't want this particular life". There are bad days when it is seems impossible to find the good in a situation where you're suffering all the time for something you had no control over.

There were a lot of "negative" things that I thought the movie portrayed very realistically. But what I love so much about this movie is that the whole overhead "moral" of the story is that although life can suck sometimes and it can be filled with the struggles of a sickness - there is still love and happiness to be had. And words can't explain how much easier and happier life can be when friends and family, and random people I run into - understand that I am sick, and I do things a little differently - but that doesn't make me lazy or any less of a person. One of my professors as of late has several times (in front of other people, no less) made derogatory comments about my need for rest or that I can't run around or do everything the other students can, and her ignorance hurts me. The tone in which she says these things, and things I have heard from many others, is one in which it's like she doesn't believe me. Like if I'm not hooked up to an IV or in a wheelchair all the time or have some physical deformity I can't really be sick.

All this rambling to say - be kind to everyone you meet. Those of us who are sick may not show it on the outside, and the judgment and accusations of being lazy or unmotivated to work/go to school/be social/whatever is simply not true and in fact very hurtful. Movies like TFIOS tell a story that many of us don't talk about or can't find the words to explain so very well. So instead of the knee-jerk reaction of judgement to a young person in a wheelchair who isn't paralyzed, or a friend being too tired to go out to eat....try compassion instead. I promise you it will mean the world to that person that you took just a split second to think about life in their shoes before accusing them of something because you don't understand.

My mess.

Am I the only one who feels like sometimes my life is just a hot mess?

There are still my difficult days like today where it literally hurts to do nothing. Still learning and applying what I learned from Mayo to make sure that I don't just stay at home and isolate on these days...always learning to walk in this process...

But aside from the mess of chronic illness, as of late I have felt like a mess in totally "normal" areas, such as relationships. And in the midst of my broken heart I went to spend the weekend with my sister for some much needed girl time. And as always, God has a plan for me being there exactly at that moment and had a message for me. On Sunday we went to her church and the message was all about Joseph and how God uses even the negative and sucky situations for His glory. And along comes the cliche - turning your mess into a message.

It says in Genesis 50:20 that what Joseph's brothers meant for evil (you know - selling him into slavery, convincing his father that his favorite child was killed - minor things) that God intended for His good. If Joseph hadn't gone through his traumatic experiences he would not have risen to his high standing, and as that verse states many people would have died as a result. His mess became his biggest message...so why can't yours?

God uses EVERYTHING for His purpose and to show His love and glory. And I suppose a part of me feels like trivial things like friendships, random interactions with strangers, and heart wrenching break ups aren't "lofty" enough to have some greater purpose but they do! God can literally use anything to bring someone closer to Him. It has always been a very obvious factor for me that being sick will aid in my testimony and message to others - it's who I am. I can't get through each day without Christ's strength. There have been SO many times where I have felt like I'm stuck in the deepest pits of hell, and there's no way I could have made it through those times without my faith. Meeting so many other people at Mayo who struggled with chronic illness I found myself amazed at how so many seemingly were alright getting through life with no faith or without Jesus. What do they have to hope for and hold onto? Another post for another time...

But all this to say that has been a huge part of my life and expectantly a huge part of my testimony. But even the smaller things like my recent break up can aid in my message too. This situation, though extremely painful, could help me help someone else down the line. I'm sure at some point someone I know will go through a break up, and perhaps the same situation happens to them that happened to me. And since I have lived through that experience I can share my story and show them there is light on the other side.

I feel like I'm rambling at this point and my brain fog/aphasia is setting in so I should probably stop while I'm ahead. But remember that no matter what is going on in your life, whether its a relationship ending, financial distress, health issues, job issues - God will take the negative and turn it into positive. He has the power to turn your mess into a message. God isn't going to waste a hurt in your life - it is going to be used for your good. Promise. You may not be able to see it now but in the big picture of your life there is a reason for it. This is a lesson I am continuing to learn, and it is a hard one....hopefully my mess is being used as a message and it brings hope for you.

2013.

I can't believe it's already this time of the year! 2013 has come and gone, and 2014 is now upon us. This year has certainly been life changing, and one roller coaster after another, but overall it has just been such a year of growth for me.

Last night I had the pleasure of ringing in the New Year with some new friends. And we went around the table saying what our most memorable part of the year was, and one of the girls noted how much she has grown this year and she is in such a different place than last year, and I found myself nodding in agreement for me. I am drastically in a different place than I was last year. God has changed my heart and mind in ways I never thought possible, and I can't wait to see what He has in store for me this year.

So as with every year, here is a list of some memorable things. Not everything is on here, I'm sure there are plenty of things I have forgotten…but here it is nonetheless!

• This year I started graduate school! What a crazy ride and it's halfway over!! Graduate school is amazing and I love all of it. Learning more and more about my future career and passion in life is such a blessing!
• I got my braces off!! No more looking like an awkward teen.
• Going on my second camping trip, but this time with my amazing Connection Group. There were some really awesome friendships I made from that group, and getting the opportunity to camp out was really fun.
• Brittney Griner. Enough said. It was such a great experience to see her play at Baylor and watch game after game as she continued to break records and started her career in the WNBA.
• Passing the 3 year mark with this blog!! I never imagined my blog would mean so much to me when I started, but I am so glad that I pressed on and did it. It's amazing to see how far I've come in just a few short years.
• Brinkley turned one!!! Such a mom, I know, but it is crazy to think he is almost two now!! He is such a constant joy in my life and helps me get through everything.
• April 17 was the West fertilizer plant explosion, which followed closely after the Boston marathon bombing. I have personal friends who are still dealing with the effects of the explosion, and being so close to a disaster and the after effects was a very sobering experience.
• Along the same lines on May 20th a tornado ravaged Oklahoma. It's so humbling to see the power of mother nature, but very heartening to see how people stand together a work to help out people in need.
• Going to Mayo. Well, this event alone has already gotten me 3-4 separate posts that you can check out for the full story. But my world got turned upside down this summer! Finally after 24 years getting a full and complete diagnosis - though different than expected, was indescribable. And then getting to spend a month with amazing people who struggle with chronic pain as I do, and getting to go on a journey with them to remember how to live life in spite of everything and being in control of my life again. Chronic pain is always going to be a part of my story, but it's not what my story is about anymore.
• Government shenanigans have been rampant over this year. With all the problems going on in Syria and potentially attacking them, and then the government shutting down….craziness. I won't go into more of that though.
• Miley Cyrus. Enough said.
• Baylor Scott & White merger has been a huge change this year!! Things are still changing where I work and there are many changes to happen in the future, but it is exciting to see all these huge companies coming together and working as a part of the largest not-for-profit healthcare system in Texas! It is such a blessing to not only have a job, but to have one I love and to be surrounding by amazing people is an even bigger blessing.
• This year a new head pastor began at my church, and he has also been such a blessing. I think he fits well with our church and is leading it in a way that is God-driven. He has a way of sharing the Word that is convicting and always is right on point! 
• This year, unfortunately as is a part of every year, there were losses. I had three friends within a pretty short time frame lose one of their parents. And that is SUCH a hard thing! I cannot even imagine all that they are going through, but I know that Heaven gained 3 more angels, and even more this year. Loss is unfortunately part of this life, but it is comforting to know that there is a life indescribably better than this one waiting for those of us who believe in Christ.
• Cornerstone. This semester a great group has started that allow singles from churches all over Waco to fellowship together. It's so hard to meet singles my age, and that's what this group has allowed me to do! Being able to socialize and be around people in my stage of life who aren't married (not that I'm at all dissing young married couples) or having kids yet, and having a network of friends in town. Most all of my friends have graduated and moved all over the nation, so it's nice to have some really great people so close!
• Catching Fire!!!! I waited so long for this movie to come out!! And it was definitely good. The books are of course much better, but the movie is very true to the book and I can't wait for the others to come out! 
• Nelson Mandela passing. Nelson Mandela has been such a global icon for so many years and it was definitely sad to see him go. But he had such an incredible life and left such an impact on millions of people. I can only hope when I go that I leave an impact on someone.
• Becoming a DTR. My new year ended with passing my registration exam to be a diet tech! It is such a relief to have that finished, and now I begin having initials behind my name! I'm really excited to see where my career is going to go from here!
• This year I had New Year's Eve plans!! Most years I don't really do anything, but this year I got to celebrate with some really awesome people and it was a really great way to end the year.

So that was basically my year in a very tiny nutshell.  I hope this new year brings you joy and happiness!

Dysautonomia Awareness

So, October was much busier than I had ever intended, thus my great plans for blogging consistently for dysautonomia awareness has fallen to the wayside. BUT! With two days to spare I have a (what I think) pretty cool way to see dysautonomia from our eyes. I've said many times (or feel like I have) that having an invisible illness is sometimes a lot more frustrating than one that can be seen. And though I have my fair share of physical problems to add to the mix, I still more often than I would like get comments like "You look so great!" "You're not sick", or "You look fine". And it's really hard to not take it personally when people don't understand that I'm not being lazy or anti-social, but I generally just feel terrible and sometimes can't keep up. So here's in a nutshell what someone with an invisible illness, specifically dysautonomia, wants you to know about them.

I took the basic framework of this from another blog that is completely dedicated to dysautonomia awareness, and think it's a great resource if you want more info! (http://dysautonomia.weebly.com)

Most of our hearts are on overdrive....all the time. 

Just standing up makes my heart race. Typically it's around 100, but I can just be sitting around doing homework or something and it can easily be over 120. And when I work out, which is more of a "warm up" to most athletic people, I have to be careful because it's averaging 155-160. So having dysautonomia makes us a lot more tired than healthy individuals, because we have to use about 3 times as much energy to do regular things. Which is why sometimes after a long day, I don't feel like I have enough energy to go out at night, or for example this weekend I went to a wedding and had to leave earlier than a lot of my friends because I was so tired, and I don't think they really understood. And on not so great days when our hearts are racing, the aching of our bodies gets worse, and you get to add lovely things like dizziness and nausea to the mix...so sometimes we need to rest!

One thing that for me in particular has gotten significantly worse this year is my memory. I legitimately don't have much of a short term memory anymore, sometimes I have a hard time finding easy words, and I'm just really out of it some days. And when I comment to someone that I don't remember something very easily, most of the time I get a comment like "Oh, my memory is terrible too". I get that some people don't have great memories to begin with, but it's not the same. I used to be very well-known in my family for having an insanely good memory...and now it's gone. I have to literally write down everything or I won't remember, even simple things like calling someone after work, or when a good friend comes in town. This has been one of the most frustrating things to deal with, and has been hard to compensate for. You never realize how much you rely on your short term memory until it's not there anymore. In dysautonomia world, we call this lovely symptom "brain fog". There isn't enough blood flow to the brain, and it can effect even super simple things like remembering to pick up milk at the store, or calling someone back in 5 minutes. I think it took a few weeks for even my parents to realize what a real situation this was. At first I thought it was from various medicines I had taken, but then I realized the true culprit. Thankfully, my parents have now embraced it and help me work on my memory, without making me feel like an idiot. If they want me to call someone, they write out the number and tell me what to ask for so I remember. Or they help remind me of things I need to do, and remind me to write things down so I don't forget. This is another thing that I sometimes get ridiculed for with people that don't understand how bad it really is. This is a really frightening symptom that a lot of us deal with, so the best thing is to realize that we're not idiots - just trying to deal with something we can't control. So if you know someone with this issue, kindly remind them of things they need to do, or write things down for them...but don't make them feel dumb for not being able to remember on their own.

Exercise is another area that can be hard for someone with dysautonomia. I am blessed that my condition is not very severe right now, and I know several people who are already much more progressed and are further limited than I. Our bodies are already running overtime doing simple things like standing and even sitting...so imagine how much harder it is to put your body in a situation like exercise that is strenuous even for a healthy person! Since going to rehab this summer and finally beginning an exercise regimen of my own, this area has taken a lot of mental adjustment for me. I completely would love nothing more than to be able to run and work out and get super fit and ripped....but that won't happen. And for a long time, when I would work out with friends, I felt like I was holding them back because I couldn't do nearly as much as they normally did. My entire work out was less time then one of my friend's warm ups. But I've realized that I can't compare myself to them. The amount of exercise I'm doing now is more than I've ever done in my 24 years...and I can tell I'm getting stronger. So even if it's not as intense, I'm still working to be as healthy as I can, and doing it on MY terms. This can be especially hard for people that were very active before getting sick, because now exercising too hard comes back to bite you pretty hard. So be patient, and don't patronize them for smaller workouts. Any workout is something worth congratulating them on, and took some good effort. 

Another big thing we have to deal with is temperature control. With dysautonomia, circulation in the body is pretty poor, so regulating our body temperature is a lot more work. And many of us, myself included, can't sweat at all so that makes it even harder to stay cool in warm weather. And consequently, being too cold makes me feel completely terrible, so I have to be careful no matter what the weather outside is. And there are random symptomatic days for me that are really bad. I can only equate it to having a fever - you constantly are hot then cold, then hot, then cold...back and forth all day, which is rather annoying. Layers of clothes have become quite handy, so I can more readily adapt regardless of where I am. 

One last area I will talk about is sleep. Insomnia is a chronic problem for us, which makes our already fatigued bodies even more tired! Our bodies are almost always in "fight or flight" mode, which makes it really hard to relax. And because of the poor circulation, moving around tends to be common. Think about laying down, trying to go to sleep, with your heart racing...not so pleasant, huh? And the fact that the nervous system controls sleep doesn't help the situation either. So it may get old to keep hearing someone say they're tired or didn't sleep well, but it's still just as true and even more annoying for us to say as it is for you to hear.  

Well, if you made it this far, I truly and sincerely appreciate it. Dysautonomia is not very well known, even in the medical community, so it's up to us to increase awareness!! Don't be so quick to judge a person by how they look, because they are a myriad of invisible illnesses. So try to see what that person is going through, and help them in ways that validate how they feel, and don't make them feel inferior. And when in doubt of how to help, just ask them! I guarantee they will appreciate that more than you trying to do something that you think is helpful when it actually makes the situation worse. 

I have been so blessed with an incredible support system full of family and friends who love me and want the best for me. And it really makes me happy when someone asks me questions, because it means they care enough to know more. But on the other hand, I have a lot of friends who don't understand and that does make it harder, and I know I am not alone in that. Yet another reason awareness is so important!

I love you all, and hope you are well. :)