Awareness video for Intracranial Hypertension or Pseudotumor Cerebri which is a rare neurologic condition that afflicts 200,000 people per year. It acts as a brain tumor but has no cure. These are some of the faces of people who Endure this condition everyday. Thank you to everyone who submitted their pictures for this project!
Awareness video for Intracranial. Hypertension or Pseudotumor Cerebri which is a rare neurologic condition that afflicts 200,000 people per year. It acts as a brain tumor but has no cure. These are some of the faces of people who Endure this condition everyday. Thank you to everyone who submitted their pictures for this project.
I have been in a committed relationship with a wonderful man for 4 years. He is honestly the best blessing I never knew I needed. When I met him I had medical issues but no where near sick like I am now. We all know that being chronically ill can have a tenuous strain on any and all relationships especially romantic ones.
It causes all types of issues, one that was hard to get used to was the surprise looks and comments you get from healthy people when they find out that we (the chronically ill) are in happy healthy loving relationships. You know those looks you get, the comments people make. I’ve heard it all, someone has told my man before how good of a man he is because he takes care of me. But yesterday I experienced the most offensive comments thus far. While at the hair salon a random hair stylist standing next to me watches as my man comes in to kiss me and let me know he is there to get me whenever I am done. After he leaves she turns around and says ” Oh I’m so happy you have a boyfriend you know and all with your situation and she points to my cane. As if my cane restricts me from being loved. I guess my “situation” as she calls it makes me a monster shunned from society who could never be found attractive. I could not believe her words. I’ve had people look at me with relief when they find out my illness hasn’t left me alone and rejected by all men but this shocked me.
After giving this woman a piece of my mind the anger left and the shock continued to set in, after that passed I realized I was a little sad. Sad that in this day and age someone who may be a little different than you is chastised.Yes, I am different but only because I am ill. I did nothing to cause it , I cant do anything stop it and I have no control over it but my peers think that this means that no one would love me. Or I am not worthy of a partner willing to put in the extra work it takes to be with someone chronically ill. Well my man, he loves me with a love stronger than most people ever feel healthy or not. And my illness does pose some challenges but in other ways it enhances our relationship. We appreciate the smaller moments that most people take for granted. We know what its like to spend nights in the hospital and see your significant other on what could be a deathbed it helps us to love harder.
I decided to write about my experience in the hair shop to hopefully let others who have experienced anything similar to know that no matter what people say or think, no matter the look they give you, the pity they may feel…. you deserve to be loved. You deserve that kiss your man gives you, the smile your woman gives you across the room, the love of your spouse. It doesn’t matter if they are your sole caregiver or not. Others opinions and pity is their problem not yours. Don’t let others ignorance make you feel like you’re less than or stop you from finding true love. Everyone deserves someone to love. No matter what medical device you carry around or illness you have, you have the God given right to be loved.
For day’s Ive tried to title this feeling I’ve had lately. The title of that feeling would be the title of this post. Luckily I found one and decided to leave it untitled. That is the perfect way to describe this feeling that I think all of us who endure chronic illness feel, untitled.
The feeling of helplessness. The guilt that racks your brain while on a yet another netflix binge instead of being productive. My least favorite of them all the exhaustion that never goes away no matter how much rest you get. The embarrassment of begging your doctor to do something anything to help you. The terror of working your ass off in therapy to get better but fearing that you never will. The feeling of not knowing how you feel just knowing you feel normal. Not remembering what normal is anymore. The weariness of needing to be in bed but not wanting to be in bed. Not being depressed but not being happy either just somewhere in the middle. And the hardest of them all to feel, yearning to feel anything other than the pain.
I hate this feeling. This feeling without a name without a warning or directions on how to conquer it or explain it. But it comes with the territory. I pray that everyone has something they can do to soothe that feeling. Me, I pray, listen to some music and try to watch or look at things that will force me to laugh. Slowly but surely the feeling will pass even if only for a little while. My best advice, don’t fight the feeling, Acknowledge it and allow it to pass. This feeling is just apart of enduring. We can all endure through this as well.
This week end I have the privilege to go visit my uncle in Indianapolis. Being sick I do not get the chance to travel often,especially not on a road trip. I am so excited but I know it will be a long hard trip for me. Don’t you hate that feeling being excited about something but not being able to fully enjoy it because what type of pain you’re going to have to endure because of it. The pain over shadows the excitement you want to feel.
The trip to Indianapolis is less than 3 hours long but three hours in a car in pain is rough and it means packing a whole lot of stuff. I have to pack my wheelchair, my cane , my walker ( just in case), my shower chair, my pillows and lots of comfortable clothing. Oh and lets not forget all my medications. Sometimes when I do have to travel whether it be for doctors or for pleasure I wonder if the trip is worth all of the pain and hassle that comes with it. But it is, its worth new memories and seeing family and friends. Sight seeing the beautiful country roads and jamming in the car to music.
To make traveling easier take your time. Leave earlier if you have too. That way you allow for breaks and stops to take medicine or stretch your legs and back. Also do not push yourself , have fun but rest as well. Put extra pillows in the car, You can even buy the heating pad that will plug into your car to help with your pain.Pack a cooler and put extra ice packs in there to help with your headaches. I always take my eye patch and extra sunglasses in case the sun is to bright. Look up area hospitals because lets be realistic we just might need it. Another important thing is set an alarm to take your medicine. Lastly start packing days before so you can take all the time you need. Worry about the pain later and enjoy yourself, I know I will!!
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!!
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.
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.
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.
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.