Health

The Harsh Truth from the Mind of a Spoonie

FullSizeRender 6.jpgI used to be that person that would constantly complain on social media, or to anyone around about how horrible it is to live with migraines. I would post on Twitter, Facebook, etc. every time I was in pain, thinking somebody would care. Nobody ever did. I would still lay in my bed, alone, and clenching my fists in pain. Nothing ever changed.

I complained to my dad that nobody ever cared about anybody who was in actual pain. That people would ask for remedies for what they think is a migraine, or something that a doctor can easily cure, but I’m still fighting in the world alone because nobody ever cares about something that never gets better. So dad told me something that sort of punched me in the chest: nobody cares about anything that doesn’t affect them. Unless they are sick, or it’s something that will affect them in any way, nobody bothers to care about it, especially if it’s an invisible illness. That’s just how society is.

You see, there are very few people who can say that they really truly care about chronically ill people. You get tired of caring after so long: this is something that never goes away, it’s always there to ruin your plans with the person. It’s something that you can’t see: the person doesn’t have a temperature, their bone isn’t protruding from their leg, and their hair isn’t falling out. They show no sign of pain, illness, or if they’re even telling the truth. How do you know they aren’t just asking for attention or wanting the drugs? You have to be able to really and truly trust this person, and a lot of people do not have the ability to do that.

A lot of people just don’t care. They’ve listened to you complain for so long and it’s just boring to them. You never get better, there is no “remission” to celebrate over dinner. It’s something they don’t understand, and they don’t care to understand because it isn’t something that they have to go through. They might ask you if you’re getting better whenever they see you in public to refrain from being that person that makes awkward eye contact and just ignores you as they walk by, and of course the answer is no—it will always be no. It isn’t the flu or a broken leg. Obviously you can’t hold it against them because if you hadn’t caught the bullet in illness roulette, you probably wouldn’t care either.

After dealing with a chronic illness for so long, you might start to develop mental disorders. Imagine being diagnosed with a disease that will affect you for the rest of your life. Imagine getting out of bed in pain, or fearing all day that a flare will occur in the most inappropriate time. Imagine looking forward to something (ex. vacation or graduation) for so long, and suffering through it. Do you see where I’m going with this?

I’m going to tell you something that happened when I was in 11th grade, 2 years after I was diagnosed with a neurological disorder. That year I went through many tests and loss. I became distant from all of my friends, I stopped caring about my appearance, I felt like a hollow shell because I felt like I didn’t deserve to live anymore, I didn’t want to.  I would think of ways that I could kill myself, wondering how many pills I could swallow before I was gone, or how fast I needed to hit a tree to get out easy. The sad part is that wasn’t even the worst of my pain. Obviously I still go through bouts where I just don’t want to exist, I don’t want to be in anymore pain.  I sit up at night and cry, and I know I’m not the only one. There are so many people that deal with mental disorders, and nobody cares until something bad happens. “They’re just asking for attention.” “They’re just weak, everybody goes through what they are going through.” “They don’t know what a bad life is.”

I’ve gone through many friends because of my illness. It’s nobody’s fault but my illness, and I would never blame them because I hate myself sometimes. I wish I had the ability to leave me. People don’t understand what they’re stepping into when they’re involved with a chronically ill person. It’s more than just watching them taking medication: it’s watching your friend suffer, never keeping plans, and slowly drifting away. I wish it was easy enough to just pop some pills in my mouth and be able to go on with my day. I wish I could say that I haven’t cancelled plans, or had to leave early to go home and take meds. I wish I didn’t have people staring at us while I take my pills at the dinner table. I wish I was normal just as much as you.

A lot of people with chronic illnesses find comfort in online support groups. A few I follow on Instagram are @themightysite @youngpeople_chronicillnesses @amigrainelife @chronicpainprincess and @thatdefyinggravityspoonie. They’re all extremely helpful, kind, and supportive. There are so many more for your specific illness that offer remedies just for you. They’ve all helped me so much, whether it be just to give me the support I need to continue going, or helping find relief when I’m in pain.

I urge you that if you have a chronic illness, please don’t just complain about it. Do something about it. Share articles about your illness, share experiences, share resources for people to read and understand. Instead of complaining about it, inform people about it. Be supportive to others with chronic illnesses, because they are in pain too. You know how it feels when somebody actually researches your illness, why not be the light for somebody else? Try to understand what they’re going through. Share the good things, “Heck to the yes! New meds are actually working and today is a good day” People enjoy seeing something other than disappointing news, and your new management might help others in pain too. Most importantly, never give up. Don’t give up on treatments, don’t give up on the good days, don’t give up on yourself.

Also, if you have a mental disorder, please reach out for help. I am always available to talk, because nobody deserves to suffer alone. If you just need to talk, if you want advice, if you need anything, please reach out to me. I will help you figure out a way to get help. I want to help you. You are not crazy, you are not alone, you are not a burden. The world deserves somebody as unique and beautiful as you are, and don’t think there is only one way out of whatever you are going through. You’ve got this, and I will stand by your side as you fight.

E

“You’re not alone, you’re with me”

Weekend

Weekend in Review

This was a pretty big weekend for me. We didn’t do anything Friday evening except for watch movies and eat pizza. I haven’t wanted to get out of the house in weeks because I haven’t felt like myself. I’ve started some different medicines, been taken off a few, and given a bunch of instructions on how to make my migraines less intense. However, I haven’t felt good about it. I know it takes time for my body to get used to it, but it gets irritating.

Saturday I woke up without a migraine, finally, and I had actually slept okay. Natalie came over after she got off of work early. Mom brought us Chick-fil-a for lunch, which is always a good thing. We watched 3 episodes of Grey’s Anatomy until Natalie decided that I wasn’t going to be laying on the couch all day again. She made a game plan.

We got up, and I actually put makeup on for the first time in weeks; I even fixed my hair. I was really happy with the way I looked because I didn’t look tired, sick, or broken.

IMG_5540We drove down to our favorite nail shop and we had apparently picked the right time because we got right in. Natalie and Britt let me go first, and I got acrylics. Usually I hate wearing acrylic nails because I hate the feeling of anything under my nails, but I felt that it needed to be done for the sake of my skin. I’ve been picking anxiously, and it needs to stop. Natalie got acrylic nails too, they are silver with cute daisies on them, and Britt picked black (what a shock) with a cute design.

Natalie had not eaten with us earlier, and it was dinner time so we took her to eat Cheddars. I love Cheddars because of the croissants and cheese fries. We had to wait for a little while, but that was okay because the people that we waited with were really nice and funny. The time passed quickly. We spent dinner talking and laughing with each other.

After dinner, we went to Pottery Place which I haven’t been to in years. I decided to paint a holder for my makeup brushes with a fancy skeleton hand. Britt spent 4 hours painting a tissue box-correction-she spent 3 hours drawing out the design and then 1 painting it. Poor Natalie was finished with her tile a whole hour before us. She probably could have been done long before us if she hadn’t spilled a whole glass of water all over our table. I really don’t know what was going through her head, but she just tipped the whole water over to look at the bottom of the cup.

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We finally left Pottery Place at closing time and it was snowing. We ran to the car so we could get warm, and that’s when I looked at the time and realized that was the latest I have been out since last year. In that moment I was extremely proud of myself for not making an excuse to stay home. I am happy that they forced me out of the house. I sit here writing this today, happy because I am not experiencing any side effects from going out. I was able to do something normal without suffering from it.

It is so important to have friends that know when you need them, and I’m very lucky that I do. I think it’s also good to know that even if you don’t want to do something in that moment, it could be something that you need. When I got home, I felt happier. I ended up sitting with them and my mom watching cheer videos until midnight, laughing at Britt tripping over Natalie’s foot and wishing that we were still young enough to compete again. I went to bed and for the first time in a while, I fell asleep as soon as I hit the pillow.

How was everybody else’s weekend? Did anybody try anything new? Let us know!