Behind Closed Doors
Don’t Suffer In Silence
After reading a blog from another individual suffering from an invisible disease it shed some light on something new for me today. Of course this inspired me to sit and write once again, So many out there suffer in silence, they don’t want others to know, or they just simply know that others will never understand. However, this is not true. Take some time to read the spoon theory by Christine Miserandino if you haven’t already. It was while reading her blog that I came to a very important realization. I suddenly knew that for some people in my life, they truly get it and others, they still don’t but maybe just maybe something like that read will give some clarity.
I have children and they are not to be expected to understand what I am dealing with, however I am always trying to find ways to help them truly get it. Then again, how does someone who does not have any type of medical or disabling issue ever truly understand it? I know based on spoon theory you can say that you have to give up a spoon for every task you complete and how many will depend on the level of energy required to complete this task. It made me think a lot of running on a gas tank like our car.
Is Your Tank On Full
When I started really trying to think about things I do and how my day is altered by my decisions it made so much sense to me, so why not to others as well. We get in our cars every day knowing we need to be aware of the gas level. How far can we go before needing more gas? Do we have the money to get gas if we accidently use more than planned? Say that every day that you get out of bed you are checking that gauge to see how full your tank is, its no different, some days its going to be fuller than others, some weeks its going to need replenished sooner than others.
If you are a healthy person, I can imagine that’s still a difficult connection for you to make, as I am sure you are thinking, well I fell worse some days than others myself, so it must not be so bad. That’s not true though, you are a healthy car running up to par so yes on some occasions your tank will deplete faster than others, but that is all in your control, did you do more than usual, drive some where different, any variation can change the outcome for you.
For those of us that are sick and dealing with a diagnosis, it is more like having a hole in your gas tank and knowing that you have to manage to get from a to b over and over again constantly fighting this draining tank. Not only is it draining faster, but it is also costing more and more to refill it. It might even need to take a full day of down time to try and fix the damage. This is how it feels every day to be us.
I Speak Because I am Loud
As a child I was told I talk to much and I am way to loud, Well now I know why. I was meant to use those things to benefit many others who suffer just like me. Just because I talk doesn’t mean you shouldn’t though. This is why I said don’t suffer in silence. Stand up and start talking about it, tell people how far you have depleted yourself for the day and don’t let anyone make you feel bad for it. We deserve to feel good about ourselves, we fight so hard every day in order to do what others take for granted.
It hurts sometimes just to get a hug, Being intimate, oh that’s going to make you hurt so bad. Trying to enjoy a day outdoors, or just spending time with friends, that hurts too. Often times the ones we love the most don’t understand it at all, then sometimes we get lucky and have someone dear to us that also suffers from invisible pain. They look at you when you flinch and they say they totally get it, they understand each and every sacrifice that you make to do what you do. They don’t question when you can’t or don’t do something. Rare as it may be, it is out there and it is so nice to have those
I’m Not Ashamed To Show The World My AS
I have become more and more open sharing my life with the world, opening up my most vulnerable parts in hopes to somehow connect with someone who might just need to hear my words. I am daily struggling with unexplained medical issues, having an ever so chaotic roller coaster ride of ups and downs from pain and sometimes the spiral loop that slings me spinning out of control. Many people unless they read my blogs have never heard some of the ways I struggle. I don’t expect the world to cater to me, but I want the world to understand. Let me tell you, nothing is worse than having someone get mad or irritated with you over something that is beyond your control.
Some days I am busting my butt to work as hard as I can and unfortunately that ends up being done with little to show for it. It is perceived as laziness or just thought that I simply did not do something because I didn’t want to or decided other things were more important. That might be the case at times, well, not the lazy thing. I promise if I don’t complete something just because I didn’t try at all, it is because I genuinely do not have the physical, mental or emotional ability to do it thanks to the unfortunate side effects of battling a constant energy draining illness.
Don’t Be So Quick To Judge
Many times I have had to be on the suffering end of a rude and disrespectful individual who just doesn’t understand why something is so hard for me to comprehend. Let me be the first to tell you I get it, I hate unnecessary stupidity. I also believe that unnecessary stupidity can come in the form of self entitlement on some peoples part. Not only in my daily life, but in my job I am constantly faced with factors that stress me out because of problems related to my medical issues. Why is this, because I know that someone else isn’t going to understand what is happening to me when I don’t understand it myself. Let me also say, I am so sick of people blowing me off with the remark “we all do that, its normal.”
We all seem to think we can judge a book by its cover and we know all we need to know in order to form an opinion that can be sometimes very harmful to another’s ability to focus on doing their best. If I say to you that I didn’t understand what you just said, I’m sure you think that I simply misheard you, or didn’t hear clearly. That isn’t always the case with me, sometimes when someone speaks to me, especially when giving me information I need to be trying to process into actions. This information is received as a scrambled mess and I am then in my head trying to figure out what was just said without having to ask for it to be repeated. Sometimes I have to have it repeated and sometimes many times.
I forget things so easily, things I shouldn’t forget, things I don’t want to forget. It is frustrating to carry on normal conversations because I slur my words and stutter sometimes, because I cant think fast enough to keep up with what I am doing. I will be asked questions and even though I should know the answer, I don’t even understand what I am being asked. I do task based on what level of strength and energy I do have, but also the mental ability to keep getting confronted by irritated people. I feel bad enough on my own over the things I struggle with, once someone makes the step of being “that jerk” and telling me I am stupid or yelling at me or any of the sort because it annoyed them that I didn’t understand properly or complete in a timely manor what they wanted, that is a moment that will change my entire day. I don’t have the energy for it, so I make decisions based on what is more important in regards to my ability to function. Can I continue this without additional symptoms occurring, if not then I wont its that simple.
Living In A World That’s Passing You By
Many times I think of how unfair it is for anyone else to have to deal with the frustrations of my illness. Then I stop and think to myself, “they can kiss my ass!” They think it’s annoying, try being me! As I said before, don’t be so quick to judge. Although I did not graduate high school and I was a single mother of 3 before I ever got a GED or any real job experience, I used to be super smart. So now, to be looked at as if I am dumb or incompetent, not only pisses me off, but it makes me feel totally useless! I graduated the GED program top of my class, with Honors and yes, they actually do that. I was Valedictorian of my class and walked the stage so proudly having my babies saying “that’s my mommy!” I was an EMT trained and certified to operate an emergency vehicle, knowing how to get just about anywhere without a GPS and knowing how to drive in high stress situations and care for others whose lives depended on my actions.
I went to college and was attending a very good college and making honor roll grades in Criminal Justice Classes. Now, not for lack of trying, I have given up on ever graduating college because I can’t regardless of the time and effort, I can’t understand the work. I lost all hope because it stressed me out and after failing to keep up a GPA to standards, I was released from school. How did I go from the girl who could have told you how to save a life during a trauma, or of a burn victim, or knowing how to treat numerous medical issues, to being the girl that can’t even find her vehicle in a parking lot! Seriously, If I don’t have someone with me, I will not find my car for a few minutes. How did I become the girl who cant even comprehend a phone number being said to translate into me typing it on the computer instantly? It is a little frustrating, I will be the first to admit, however I can’t control when its bad or how bad it will be from day to day. The only thing I have control over is limiting my contact with the idiots that are too self entitled to be bothered by a little bit of an annoyance in their day.
Control What You Can And Forget The Rest
Sadly I am very limited to what I have control over. I can’t do anything about my pain level, how bad my cognitive issues will be, or if I will have any other random flare issues on any given day. I can however, stop hiding from the embarrassment of it and start talking, I can share and spread awareness to the things that make my life more difficult than others might deal with. I can avoid any potential stressors that might trigger additional flares. I can avoid contact with others whom just can’t be understanding. I can’t just give up having a job, so unfortunately I have only a limited amount of control to some of that, however I can fight every day for awareness and research and answers. Why, because eventually that might lead to me having a normal life again. If not, it might lead to the needed steps to make disability an option for someone who truly struggles to do their job thanks to medical issues.
I can be a fighter, a warrior and I can own what I am and who I am and face it head on in hopes that someone else may never suffer from the things I have. I can be thankful for those who understand what I deal with and do their best to make my day a little easier. I can’t give up on life no matter how hard it gets for me. I will now and always kick some AS! I am warrior strong and each time my eyes are opened to new areas of myself, of my struggles, I look forward to sharing it with those that might need it.