Accepting a Chronic Illness

When I was first diagnosed with POTScfcee80afbda4db35fe8473f995066b4 I never really put much thought into the fact that it was a chronic illness, that I could have it for the rest of my life. All that changed when my symptoms became more frequent and severe. Now I think about it all the time.

Every day I have different symptoms and different things trigger them, so there is no real way to avoid triggers. Here’s a list of symptoms that I have at least twice a week:

Severe headache

Fainting spells

Ear pain/loss of hearingsymptoms

Muscle cramps

Lower back pain

Brain fog

Eye pain

Stomach pain

Joint pain

Chest pain

I am not listing these symptoms as a way of saying “Oh, poor me” I am doing it so that if you 682d34f275b433ee7f23a89f7d1aaf10have POTS and some of these symptoms you can relate, and maybe feel a little less alone. I deal with all of these, and I get on with my life. I move forward.

Knowing that for the rest of my life I will have days that I can’t get out of bed has changed how I view my future. It is important that I push myself, as well as realize what my limitations are. An example of this is work. I have always wanted to work, but throughout high school that was never an option. I missed a lot of school for medical reasons, and I was advised by my cardiologist that I should hold off on getting my drivers license. I was passing out while sitting at the time, and driving would not be safe. Now in college I work at my schools writing center as a writing consultant. Students come in with different types of writing and I work with them on improving it.

There are two main reasons that I can hold down this job. The most important is that it doesn’t require me to stand. We sit when we work with the students, and if it is a really bad day I can stay seated in the roller chairs for my whole shift. The second reason is that I can cancel my shifts up to an hour before. The other consultants are great and are always looking for extra hours. This is crucial because I can be fine one minute,raf,750x1000,075,t,fafafa-ca443f4786.u1 and contemplating if I need to go to the Emergency Room the next.

In contrast, my boyfriend works at a sandwich shop where he can only sit on his break. This is a job that I physically could not do. I can barely stand for twenty minutes, let alone the three hours he goes without sitting at work.

In the future when I am looking for a job I will have to take things like this into consideration. I may have to turn down job offers because the work environment is not conducive to maintaining my health. I am prepared to do this only because I have an amazing support system. My family is always there for me and I know they, along with my boyfriend, would do anything to help.

That is how I face the fact that I could very well wake up tomorrow feeling bad, or worse than I do now, my support system. I urge you to constantly answer peoples questions. Try to be Be-Kindas honest as you can. No one can read your mind, and with an invisible illness it is crucial that you try and vocalize how you are feeling on the inside. Try not to feel as though you are complaining when people ask how you are and you are constantly saying you don’t feel well. Your feelings are just as valid as the next persons.

You matter.

Tomorrow you may be in pain, but that doesn’t mean you matter any less. People say pain makes you strong, and to an extent I agree. But, I think the strongest people are those that can admit when they need a break, those that take an extra minute to recover. There is nothing wrong with taking your time.

Your illness is going to knock you down. All that matters is that you get back up again on your own time, when you are ready.

 

~Maddie

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How to Find a Good Book

We’ve all been there, you pick up a book that you think is going to be amazing and it turns out to be boring and uninteresting.7avjGyOY So, how do people do it? How does everyone seem to find the best books all the time?

There are a couple ways to find out if a book is good before you read it. You could always look up spoiler free reviews. These can be helpful because they let you get a feel for what the book is about without revealing any of the major plot points. Hails Hearts NYC does a lot of spoiler free reviews on her YouTube channel.

On a nook you can also get the first couple chapters of most books for free. This is another great way to see if you enjoy the book without investing any money. I’m also fairly sure that Kindles have a similar system where you can get the first couple chapters of books for free. 

Along the lines of being free there are also a plethora of audio books on YouTube. If you searchunnamed the title followed by audio book you can usually find it. You could listen to the whole book, or just the beginning to see if it peaks your interest. Personally I find that the pace of most audio books is too slow for how I normally read, so I end up using them to see if I will find the book interesting before I purchase it.

Find a YouTuber that has the same taste in books you do. I get the majority of recommendations from WhittyNovels. I watch her hauls, and keep track of the books that sound interesting. 

There are also websites like Goodreads,goodreads-logo-1024x576-7abf5bd8d98b9d10 where you rate the books you have read and they recommend books based on the ones you’ve enjoyed. This is a great way to keep track of what books you are reading, the ones you have read, and the ones you want to read. You can also set goals for the number of books you want to read in a year. I have found it really fun to look through the recommendations and find new books!

There are great books out there! You just have to know where to look.

 

~Maddie

Soundless by Richelle Mead

Summary:

From Richelle Mead, the #1 internationally bestselling author of Vampire Academy and Bloodlines, comes a breathtaking new fantasy perfect for fans of Leigh Bardugo, Laini Taylor and Sabaa Tahir.

“Fans of characters like Rose Hathaway and Sydney Sage will flock to this impressive stand-alone novel.”
Booklist

For as long as Fei can remember, there has been no sound in her village, where rocky terrain and frequent avalanches prevent residents from self-sustaining. Fei and her people are at the mercy of a zipline that carries food up the treacherous cliffs from Beiguo, a mysterious faraway kingdom.

When villagers begin to lose their sight, deliveries from the zipline shrink and many go hungry. Fei’s home, the people she loves, and her entire existence is plunged into crisis, under threat of darkness and starvation.

But soon Fei is awoken in the night by a searing noise, and sound becomes her weapon.

Richelle Mead takes readers on a triumphant journey from the peak of Fei’s jagged mountain village to the valley of Beiguo, where a startling truth and an unlikely romance will change her life forever….(https://books.google.com/books/about/Soundless.html?id=GDwWrgEACAAJ&hl=en)

Spoiler Free Review:

I loved the premise of this book. I am a hearing person that knows sign language, and it was fascinatingea6a38fc0ba708087b233a0fb4166128 to read a story about a society where everyone is deaf. There are thing that you don’t think about that have to be changed or done a different way simply because everyone around you can not hear.

Along the same lines, the way Mead describes Fei getting her hearing is very creative. How do you explain something to someone that has no experience with it. It reminded me of The Giver by Lois Lowery9780553571332, where all of the characters are color blind and the main character gets the ability to see color. Both of these characters have to learn the words to describe what they can now hear/see. 

I also loved the world the story was set in. It combined the traditional Asian traditions found in other books, with spectacular imagery. At points you could close your eyes and see yourself standing at the edge of Fei’s village, looking down the cliff side with her.

The characters were also developed well. Although Fei does have a romantic interest, it is not her main driving force throughout the journey. I liked how she could go through all the trials that she does, diven by something other than her love for this boy. It is rare that we get a story where the main character is smart, strong, and not boy-obsessed. It is a welcome change.

The writing is easy to follow and the book is short enough that I read it in under a week. It is a page-turner, you always want to know what happens next.

Although I did find the ending to come out of no where. That was the one problem I had with this book. The ending was good, don’t get me wrong, I just feel like there was no backing for it. Almost like Mead needed a way to resolve the conflict and she took the easy way out.

4 out of 5 stars.

What were your thoughts?

 

~Maddie

Tackling a Big Book

I have always looked at a large book like a challenge. I was that kid that wanted to be reading the largest book. I wanted to be able to say, “Look at all of these huge books I got through!” Here are some tricks I picked up to help you get through a large book.

Currently I am at college, where I have about 40 books with me,IMG_20160708_170203731 the shortest being around 200 pages. Right now I am reading The Book Thief by Markus Zusak (an amazing book). It has exactly 550 pages, which works out perfectly because,

1. Break the book up into chunks

I can read around 50 pages a day when I’m at school and trying to do other things along with get through a book. So, every day I try to add another 50 pages. This also helps me feel accomplished. Instead of thinking, “Oh gosh, I have 325 pages to go!” I can think, “Just 25 more pages for today!” Pick a number that works for you. It could be as little as 5 pages a day! This brings us to my second tip,

2. Read every day

When faced with a large book the best thing you can do is try to tackle it every day. Some people find it helpful to set aside a time to read every day. Some days I don’t feel like reading, but I force myself to read at least one page.IMG_20160708_165342 That was I know that I am one page farther than I was the previous day. This helps to keep that feeling of hopelessness at bay. If you do feel like you are drowning in the number of pages you could always,

3. Try reading the book electronically

I have a nook, and I find it helpful to read some larger books on there, rather than deal with a physical copy. That way I don’t see the huge block of pages that I have to go through. I also find that I read faster when I am reading on the nook, so I read on there when I am under a time crunch to finish a book. Reading on the nook also makes it easier to read in bed or while traveling. You don’t have to worry about the book getting bent or taking up a lot of space. However, I do prefer to hold the physical copy of the book. This may be why I have 40 books with me at college…

What if I get bored of a book? 

This happens to me quite often. What I do now is simple, I just

4. Take a break

Reading the same story for a while can get boring. If I find myself not wanting to pick up the bookIMG_20160708_165905214 I take a quick break from it. I read a part of a book I know I will love. Just a chapter or two, and then go back to the longer book. Currently I am reading a couple chapters in the fourth Harry Potter book (my favorite)
every time I get bored of my main book. I suggest picking a book that you have already read, and enjoyed. If you don’t want to go back to the book,

5. Don’t force yourself to finish

If you are reading a large book for enjoyment, there is no shame in not finishing the book. I have started several large books that bored me for one reason or another, and I just stopped reading them. Don’t drag yourself through a book you aren’t enjoying. Simply close the book knowing there is always another one to be opened.

I hope these tips were helpful! If you have any others please leave them in the comments!

 

~Maddie

Looking Chronically Ill

People judge books by their covers. We make assumptions every day, based on what a person is wearing, if they have acne or not, if they are attractive, etc. That’s the hardest thing I have to face when it comes to interacting with people while chronically ill.

I have POTS click here for more information.e4a81806f46084b251789ff91c0dc51c Although I could be in unbearable pain, I look perfectly healthy. Most people would say this is a blessing, and sometimes it can be. I can go about my day without people constantly asking me what is wrong and if I am feeling okay. That makes it easier to ignore the pain and think that I am “normal.” But there are times when I wish the pain I was feeling was reflected in my appearance.

I fly a lot for school. And flying, of course, makes me sick. I’m lucky like that. When I have to take a shuttle I sit down. 

What people see: a perfectly healthy 20 year old taking up one of the few seats that could be taken by someone who could really use it.

Reality: a 20 year old who is on the verge of puking, sitting because she feels faint and wants to avoid passing out, trying to breath slowly to slow down her rapid heart rate, trying to avoid peoples stares

You can see that the difference can cause some confusion.

I have been called lazy, inconsiderate, and many other things.Be-Kind I used to not take the seat. I would stand and push through it, making myself sick in the process. It has been a new revelation that I need to take care of myself as much as the next person. So, if I need a seat, or heaven forbid a wheel chair, I am going to use them. Because I know I need them, people can stare and judge all they want, but I know what I can and can’t do.

I used to see myself as weak, because of all the accommodations I now have to make so I can function. I would push myself to be just like everyone else. I wore three pairs of compression socks and leggings so that I didn’t have to be the only person sitting in my lab. 

I’ve moved passed that mindset. Now I take the seat, because I know I need it so that I can focus on the lab and not passing out. I am open about my illness. If people have questions I try to answer them the best I can. I don’t mind people askinge2916d22aa4db4922e16c65357ff82d8 questions, in fact I encourage it. I would much rather have people ask me why I am sitting than stare and wonder.

If you are someone with a chronic illness, do what is best for you. People’s judgement can hurt and become annoying, but remember how much energy it took for you to get up today. Praise yourself for doing the little things. Some days all I can manage to do is brush my hair, I don’t even get out of bed. Instead of thinking “all I did today was brush my hair” I try to think “I managed to brush my hair today. I did that all on my own, through the pain. I rock!”

That change in mindset can be hard, and it takes time, but I have faith you will get there!

Keep your head up!

 

~Maddie

More Than This by Patrick Ness

Spoilers!!!!!!

Summary:

You see a boy drown. You see him wrapped in death. You see him wake up. This is the story of what he discovers.

Review:

I read this book in under a week and adored it! I could not put it down! I fell in love with all the characters, Tomasz most of all. I loved how witty he is, and how honest he is about the way he died.tumblr_n9udyxcQKt1rqquu7o1_500 I also liked that Seth being gay was portrayed in such a realistic, and honest way. It wasn’t glamorized, or made out to be something alien.

The writing itself was simple and easy to follow. It made reading it quickly very easy. I liked how you found out information as Seth did, it made the world seem more interesting and I did not expect it to turn out how it did. The opening scene is when we see Seth die, and it has to be the best death scene I have ever read. I can still close my eyes and picture Seth’s body being pummeled by the ocean.be122703aed42bfa574c416db5db7721 If you are on the fence about reading this book I suggest that you read the first couple of pages, you will be hooked.

The ending was frustrating though. The reader doesn’t get to see what becomes of Seth once he is shut back into his coffin. Personally, I believe that he was put back online and either died there, or never found his way back out.

I loved this book and plan on reading it again. I wouldn’t hesitate to read something else by Patrick Ness.

5 out of 5 stars!

Let me know how you thought it ended!

~Maddie

The Darkest Part of the Forest – Holly Black

Spoilers!!!!!!!!!!!!!!

 

Summary:

The Darkest Part of the Forest by Holly Black takes place in a small town surrounded by forests where magical creatures, like elves, live. There is a glass casket at the edge of the town where a boy with pointed ears sleeps. He hasn’t woken up in many, many years. One day he is found to be missing, and the story unwraps from there.

It follows siblings Ben and Hazel and their involvement in the mysterious boy’s waking.

Review:

Before I even picked up this book I knew there was what was described as a “huge twist” in the middle, so as I was reading it I was looking for the twist, and never really found one.

That being said I loved this book! I loved the way that love was portrayed throughout the story. The writing was simple and easy to follow, and the story was a page turner. The book also contained an epilogue that tied up all of the story lines, while leaving most of it up to the readers imagination. severin I loved how you could never quite get a read on what Severin was thinking, and how Hazel was motivated more out of her love for her brother, and romantic love. The writing threads in aspects of embarrassment, making the story seem more relatable. Both Ben and Hazel spilled their guts to the sleeping boy, never thinking that he could hear them, or wake. They both came to love him, in their own ways. It is like pining over a fictional character, and suddenly they are sitting across the room from you, and they have heard everything you have ever said to them. Embarrassing. It was interesting, and a light read, would highly recommend.

4.5 out of 5 stars. Easily.

I would definitely read something else by Holly Black.

 

~Maddie