The “B” Word

We’ve all felt like a Burden at some time or another, but of course we do not want to admit it. Admit how hard it is to have to depend on someone for everything. Its hard to have to ask for money or ask for a ride to yet another doctors appointment or physical therapy visit. But we do what we have to do.

The people who really love us will never tell us that we are a burden but we still feel it. We feel every deep sigh when you forget to tell them something important, The eye roll they do when we have wasted 4 hours of our time at a specialist appointment only to be disappointment once again. The tension you can cut with a knife when the person you depend on has to change their plans to help you once more with something you need to do. It sucks!!!! And most times you feel like you cant tell them how much it hurts you to have to depend on them or to be a burden to them. A lot of times I know with me, I’ve felt pressure (if i’m honest that I put on myself ) to always be positive no matter how i’m feeling. On my worse days I put on a smile. On my very emotional days I withdraw to try and hide from everyone that I’m hurting , hide that I feel like i’m a huge weight on their shoulders. That I do not want to let them see me cry again today, That I don’t want to put one more burden on them.

What I’ve learned is that its okay to be sad and to cry and even laugh at yourself and how hard it is for you.  The people who really love you are going to be there regardless. Regardless of how much you bug them or get on their nerve. And yes our questions and appointments and even our bad days aggravate them but they are human. Eventhough for us they do superhero things. I don’t believe that we are a burden to them or anyone. Or that they think we are a burden they just have bad days too.

Nothing is wrong with them being annoyed or us needing attention. We just have to give our caregivers a break and some time to not be our caregivers but our loved ones, our boyfriends/girlfriends, our parents. That separation makes it easier for everyone and makes those hard days a little easier to manage.

Don’t think so much about the “B” word because honestly its not much you can do about your health situation or the fact that you need a little more attention. You also cant change the fact that people love you and will help you even when you don’t want it. Think about the fact that even in pain you get to spend invaluable time with the ones you love!!

 

Moments

As someone with a chronic illness, I face moments I know I will dread. Moments like bad doctor appointments, where the diagnosis may be worse than the news I had before. Moments where I overdo it on a good pain day and know the next day will be a day where I don’t have enough energy to get out of bed. Those moments at 3:00 a.m. in a small hospital bed where the nurse is waking me up to take my vitals for the umpteenth time. The moments where I will have to explain to my friends why I can’t make it to another event they’ve planned. Sadly, I even envision the moment where my illness will take its toll and win the fight against my ailing body and the doctor have to tell my loved ones that, despite their best efforts, I did not make it. Those are moments I expect – hell, I plan for them – but then there is that one moment…

That one moment of sheer, pure, unadulterated, uninterrupted joy you could never expect. The joy in the eyes of a little niece or nephew when you surprise them at school. Or the joy in the eye of your man when you finally have the energy to get dressed up and take him on a date. That joy that fills your heart when you get a whiff of the smell of your newborn cousin. There’s a sparkle of joy you can feel in your mother’s touch on that one day you’re able to spend quality time. The laughter and joy you get from listening to your godchildren playing outside. Joy in your friends voices as they catch up with you after weeks of missed occasions. Joy in your puppy’s response when you finally have enough strength to play that game of fetch with him. In those moments, my joy is more powerful and more sustainable than a lifetime of pain.

Those good moments help you get through the bad ones. Although the bad moments are…well, bad, in a way they’re worth it because I wouldn’t cherish the joy in the good without the bad.

 

Accessories

Every woman loves accessories, A new necklace that goes with that beautiful dress. Some shiny earrings to match the new shoes you got on sale.

Maybe even a hat, I love them all but the accessories I hate are the ones im forced to take with me everywhere I go, my cane or walker , my wheelchair on bad days. I don’t know if its just me but I feel so self conscious walking into a crowded room with my red walker not far in front of me rolling into the room. How crazy a 22 year old must look stopping to take a seat on my walker because my body cant make it one more step without a breather. That feeling when every ones eyes are on you and you know there is nothing you can do to stop it. Sometimes my self conscious is so high I don’t want to go out especially on days where I have to use my wheelchair. In a social setting its terrible. Pushing myself into the room knowing you’ll need special accommodations, feeling like your in the way. The big bulky chair taking up space. The sparkling wondering eyeballs following you across the room. I thought that id personalize my “accessories” to make me feel more comfortable when I was out and about.

You know help me feel more like the confident woman I use to be but even that made me feel like it brought double the attention to me when all I wanted to do was fade into the background. I got a cane in my favorite color green and now people look harder at that. Probably asking who I think I am and what could be wrong with this young woman. Oh well I guess with my chronic pain and since ill always be chronically ill that I will just have to get used to it. Cant a girl wear her “accessories” in peace especially since I have too.

To My Boyfriend

Dear Boyfriend,

Thank you for understanding on the days I can’t get out of bed. And thank you for doing the dishes when I do not have the energy to stand. On the days when I can not make love to you, I’m so sorry. I appreciate every single thing you do for me. Even on the days I don’t express it to you.

I know it sucks when we have plans and we can’t go because I am having a bad day. I know it is terrible when our date day turns into a doctor’s appointment or a trip to the hospital. I know people say I am the strong one, but I think it’s you. It takes a very strong man to care for a woman who sometimes cannot care for herself. I cannot imagine how hard it is to hold me when I’m crying on days when the pain is just to much to bear. The pain you must feel when I’m laying in a hospital bed. How strong you are because you never show me when you’re afraid for me, or hurting yourself.

I’m sorry that sometimes I don’t acknowledge your pain because mine is so bad. I’m sorry that sometimes our life plans are put on hold because I’m sick and that things we want get put on hold because of medical bills. But I want you to know how much I appreciate you and how immensely grateful I am for you, and how very much I love you. And how much I cherish the memories we do make despite my chronic illness. You have a heart of gold and deserve a medal of honor.

10 things having Epilepsy taught me

Before I became ill, I was a person who planned everything from A to Z. When I became sick all of those things had to change. All of a sudden my illness controlled my life. It was hard for me to let go of the reins and just live my life. Here are 10 things I learned from having epilepsy. Some of these things surprisingly changed my life for the better.

1. Doctors don’t know everything. I went years without being diagnosed and saw many doctors to no avail. I had to trust myself and my body, trust that I knew that something was wrong with me and eventually I would get the help I so greatly deserved and needed.

2. It is OK to not be OK. I used to be so hard on myself when I had days that all I did was cry, or I could not get out of bed. It took me a long time to understand my body wasn’t OK and it did not matter. It was fine if all I did was watch TV that day. It was OK if I could not get out of bed, because I was fighting every day to be OK and that was enough.

3. Things don’t always have to be extravagant. I used to enjoy skating and dancing and going out to clubs, big events, traveling and all of that. But when you’re chronically ill, you have to enjoy the little things. A cookout at the house so I can stay home and eat. Watching movies at home instead of going out to the theater. Painting my niece’s nails at home instead of taking her to the nail shop.

4. People are going to judge. In this world, some people can be so cruel. They are going to judge you for not working or going to school. but so what? They don’t deal with what you deal with every day.

5. Cherish life. When you’re ill, life moments like birthdays and family events can feel so much more important and should be cherished more than before. You realize you never know what could happen or how you will feel the next day, or for the next family event.

6. Even your family may not understand. Just like your friends, your family may not understand, or may stop understanding. They may stop being there for every hospital stay or surgery. They may stop asking how you’re doing or stop checking on you as often, not because they don’t care but because they don’t understand.

7. It is fine to miss who you used to be. I used to be a dancer and a skater and wear 7-inch stilettos, but I can’t do those things anymore. Sometimes I miss being that person so much that it makes me depressed. I had to learn that I can miss that person, but I should do so in admiration for who I used to be, not in sadness. Yes, my body is different, but I’m still the same person inside. I need to admire myself now, because I’m stronger and more emotionally secure than I was before.

8. You deserve everything everyone else does. I used to feel like I couldn’t be happy or enjoy my life like everyone else did, but I deserve it too. It is still my life to live and enjoy, even if I do so in different ways sometimes.

9. Fight for yourself. As I said before, doctors don’t know everything, and sometimes you have to fight for them to listen. If they don’t, go find another doctor who will listen. Fight until you get the help you need. Related Stories 26 Truths People With Epilepsy Wish Others Understood In the Nighttime Mind of a Parent to a Child With Epilepsy

10. Pity sucks. People will pity you, and it sucks. It can make you feel useless, and quite frankly pity itself is useless. But I believe people pity because they do not understand how to show empathy, and most people don’t know how to show that unless they’ve been through the things we have. And that is their fault, not yours. A disability and more specifically epilepsy can be difficult and challenging, but it can also teach you some life lessons and give you some memories you may have never had otherwise. Sometimes we have to look at hard things with a positive outlook.

Yes I’m sick enough

When we’re sick, I think we are extremely hard on ourselves about everything. Me,I always feel like my chronic illness is not enough. When people say I don’t look sick, I always think well, what is sick supposed to like? Or I feel down on myself thinking maybe everyone thinks i’m faking because I do not look sick. When it comes time to fill out paperwork for Social Security I read my own story and think I am not sick enough to deserve the governments help. Then my feelings are confirmed when I am denied not once, not twice but four times. Then I go to my doctors appointment and see people worse off then me and I feel like I do not deserve all the attention my doctors give me, all the help I get for my illness, all the phone calls my nurse has to return to answer my question.I don’t feel sick enough when I see others who seem to be worse off then I am but a friend once told me that everyone hurts differently and don’t let seeing how other people experience their pain diminish your own.  Just because I am able to have some good days doesn’t mean that my bad days aren’t horrible and far worse than anyone else’s worse days. No I may not be in a hospital bed today but that person in the hospital bed might not be able to handle the immensity of pain that I have. Yes others can question if I’m faking it, or not understand my chronic illness or pain but I should not. Who says what sick enough is anyway. I think the take away from all of this is when you are chronically in pain and hurting don’t let anyone not even yourself tell you that your’e not sick enough whether its to get help or assistance, recognition or respect. Your pain is your own and that is enough.

What is really going on

I have benign Idiopathic Intracranial Hypertension and the internet and most doctors will tell you that the diagnoses means that you just have headaches. I am here to tell you that, that is wrong. Headaches maybe a symptom but it is so much more than that.  My ears swoosh all the time, at night it is so loud that I cant even sleep. The pressure in my head is so high that when im upright i’m dizzy and off balance. The pain in my neck and back is someday’s unbearable and lets not forget that its winter and I still have not been able to go outside without sunglasses. We can talk about the symptoms all day but what people don’t understand is after 4 medications every morning and night and 6 surgeries you have a little more than just headaches.  It is so annoying when even your doctors belittle your condition. If our doctors do not understand, how can we expect others to understand. Stereotypes are awful in any situation but even worse when your the victim of the stereotype. We deal with pain everyday, all day long and all we really need or want is for someone, anyone to just understand. The nicest thing someone could ever do is ask questions, hell even google my condition and see what I really go through.

Sometimes you hope for something to be wrong

Having a chronic condition sucks. You go back and forth to the doctors, You have to take test after test after test. I’ve been dealing with a nonstop high pressure headache since the beginning of September. I’ve had blood test,EEG’s,MRI’s, CT Scans and the worst of it spinal taps. Even with all of that my wonderful team of doctors can not find out what is wrong with me or my two shunts. I’ve been through so much and I am so tired that I can not wait to hear the doctor say that they found something wrong and they can fix it.  I’ve had seven surgeries in two years, three of which were brain surgeries and I am in so much pain that id volunteer to have another one if it would fix the problem. You always know with a chronic illness that it’ll never truly be over but you would do anything in the world to get this bought of pain over, these issues you are experience today over. Even if it means a long hospital stay, a surgery, more medication, anything.  But when you feel that way and you express these feelings, this urgency to your doctors they think your crazy, they might even send you to a shrink. They think you must just want attention because who in their right mind would want another surgery just to get rid of pain. But that is what they don’t understand, they don’t understand the pain that we feel so enormously everyday all day long.

Hello World

My name is Essence Unique Cheatom. You can call me Unique. I am a 22 year old who suffers from 2 debilitating conditions, Pseudo tumor Cerebri and Epilepsy. But that’s not all I am. Before I became ill I was an active 19 year old who worked 2 jobs and loved going to college. I was preparing for my dreams living life with the man of my dreams. And then the wind got knocked out of my sails. At a normal eye doctors appointment I found out I had fluid and pressure build up on my brain and it was making me slowly go blind.

At that point in my life I knew that I had epilepsy but I only had seizures every few months but this diagnosis drastically changed my life and quickly. After just a few weeks I was legally blind and needing my first brain surgery.

After multiple specialist, medications,seizures and six surgeries later i’m left with a life I don’t so easily recognize so I decided to take it back. Because of my illnesses I can not work or go to school so I have started trying things I would have never tried if I was well. I found a love for gardening, making wigs and I fostered the idea of starting a foundation for people like me who endure illnesses that affect the brain. I also recovered a love that had drifted away WRITING.

Since elementary school I excelled at writing and in English but just going through life I didn’t keep at it. Being at home all day I realized I can help maybe even encourage someone else. That’s where the idea for this blog came. I hope that my stories, my words can help someone who needs it. I want this to be a safe place for people to discuss their issues, ask questions and laugh because sometimes we cry so hard all we really want is to laugh!

I want everyone to know I am not just a writer trying to make someone laugh I am someone who lives, suffers and endures this everyday. Also I am a volunteer Patient advocate. I have taken classes on ways to support you in anyway you need and to answer any questions you may have.

I hope you enjoy this blog and I thank you for reading, laughing and enduring with me.