Unspeakable.

To close this week of Invisible Illness Awareness Week I wanted to tackle a topic that all of us face all too often - having to prove our disability.

Close-minded society will tell you that you must be in a wheelchair to be considered disabled - which is simply not true! While yes, many of us do have wheelchairs but that doesn't mean we are bound to them 24/7. I only use mine for long distances, or when I've used all my energy for the day and still want to go out.

One main example in which I have been publicly called out to prove my disability is written about here. I have faced this scenario on many occasions, but that one in particular was really memorable. But the reason I bring this up is because this weekend, as you may or may not have heard, Kanye West called out a couple people for not standing up and dancing to his song during a concert - both who were disabled. One held up a prosthetic limb to show why he wasn't standing, and the show went on....until later when Kanye noticed someone else wasn't standing up - this time someone in a wheelchair. He then said that he could not do his show properly unless everyone was standing up "unless you got a handicap pass and you get special parking and s**t". Excuse me?! WHAT?! Last night I was completely lost for words when I saw this. I can't stand Kanye for a lot of other scenes he has made over the years, but this one has put me over the edge.

If someone pays good money to come to a concert, they can sit the whole time or stand if they want to! But specifically calling out those who can't stand, and them blowing them off like it's such a luxury to have special parking is completely ignorant. Those of us with dysautonomia have trouble standing more than a few minutes, and thus need to sit - wheelchair or not. I remember being humiliated in front of a restaurant full of people when I was called out, imagine that humiliation for these people who were at a crowded concert!!!

Pointing out his ignorance and terrible behavior (these are the edited words I have chosen, in my head there are much worse things I have called him) is pretty useless, because any ding bat can see what he did was horrific. But it brings up an incredibly huge point that society just doesn't seem to get. Disability doesn't always require a wheelchair. You can't always see outwardly the illness ravaging someone's body. The cliche "Don't judge a book by it's cover" couldn't be more true...and don't be so ignorant! If someone wants to sit down, they shouldn't be called out for it. And no one should EVER have to prove their disability.

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.