Mallorie's Photography

Monday, September 14, 2015

The Spoon Theory written by and spoken by Christine Miserandino

If you haven't heard of "The Spoon Theory" written by Christine Miserandino yet, please click the link above and read how she explains what it's like to live with sickness or disability. Thank you Christine for coming up with such a brilliant analogy that we can use to explain to others what day to day life can be like for people with chronic illness.

Arthritis Foundation Champion of Yes

Friday, July 17, 2015

What Pain Teaches You

I'm not talking about a few aches and pains. The kind of pain I am accustomed to is indescribable and unimaginable that a person can bear with on a daily basis. There's no way I can make anyone understand this kind of pain unless you personally experience it yourself. Rather than trying to come up with one hundred different words to describe pain, in this post I'm going to share that in order to survive through this pain, you must believe that pain is here for something good. That the pain is here to guide you and help someone else who might be struggling and feeling lost and alone.

What Pain Has Taught Me So Far...

Pain has taught me that there is darkness and I need to let the darkness in. Don't fear it or avoid it. The darkness is there to guide you to the beauty that will follow. 

When you're body is sick, your mind and spirit aren't well either. There will be depression, anger, grief and a whole heaping pile of emotions that comes along with illness. Don't beat yourself up, your body is doing the best it can trying to fight off extraordinary pain. Be gentle and kind to your body. This isn't the life you wanted but it's the life you've got. Turn the negative energy (anger, sadness and/or grief) around into something positive and useful. If you're unable to work, volunteer, take a class or discover a new talent. Explore new things and do what you LOVE to do. Bake cookies for your neighbor or do something kind for someone you love. Spread the goodness that comes from your heart.

It's easy to get wrapped up in pain and sickness where it's all you can focus on. Don't get stuck in this vicious cycle. Don't ignore your body, but try and get your mind off of pain when you can. If you're unable to get out of bed one day, make sure you're aware of your thinking pattern. If your thoughts become negative, let the negative thoughts in, but then practice turning these thoughts around into something positive. If the pain is full force or your too tired (physically or mentally) try listening to soothing music, watching a good t.v. show, read a good book, pray/meditate, or make a list of small and/or big goals you can accomplish for when you're feeling better. Remember to be realistic with your goals and that it's okay if you need to ask for help.

Learn to listen to your body's needs and when it whispers to you that it's had enough. Rest when you need to and keep moving when you're able to.

You won't be in control (of your pain and fatigue) sometimes and that's okay. I believed that a part of fighting this illness was that I must be in control of all situations at all times, but it only causes more anger and frustration.You'll be happier and more relaxed when you learn to let go and go with the flow. Acknowledge the pain and/or fatigue and care for your body. Take a warm or cool shower, try gentle stretching, ice packs/heating pads, get a massage,  and have lots of comfy pillows/fuzzy things.

You will be questioned, judged and ridiculed about your illness. Don't let other people's opinions get you down. Believe in yourself even if no one seems to believe in you. Once you start believing in yourself and being true to yourself, others will come around. Or they might not, but that's okay too because it will guide you to the people you need in your life. 

Speak up and be vulnerable. Stand up for yourself and what you believe in. It takes courage and practice but it is necessary. 

Don't be afraid to go against the tide and think outside of the box.

You are never alone. Don't isolate yourself or give up on yourself or others. Reach out if the pain becomes too much for you to carry by yourself. There are others out there that are willing to help you even if they don't fully understand.

You may want to give up and you might give up for a little while. But ALWAYS get back up even it's painful and difficult. Embrace the pain, your struggle just means your story needs to be heard.

"Believe, when you are most unhappy, that there's something for you to do in the world. So long as you can sweeten another's pain, life is not vain." -Helen Keller 

Laughter is truly the best medicine. Find something to laugh about everyday or try and make someone else laugh. "Always laugh when you can. It is cheap medicine." -Lord Byron

Tuesday, March 17, 2015

Removing The Mask

"Pain is always new to the sufferer, but loses it's originality for those around him. " "Everyone will get used to it except me."  -Alphonse Daudet 

I want to be understood in a way I can never be understood. That's a  reality I have to learn to accept with invisible pain. I try to explain until my face turns blue, but my words are often forgotten.
Speaking out lout about pain doesn't come easy for me. It's awkward for everyone, and no one knows how to respond. The normal response is pity, and pity is uncomfortable.

Last week it was my boyfriend's 30th birthday, and I wanted to bake him a cake. We were also invited over to his brother's house for dinner. These are all things you normally wouldn't stress about, and people who don't live with chronic pain don't have to usually think twice about.
All day I was cautious of everything I did, so I wouldn't use up all of my energy (spoons) so I wouldn't  be stuck in bed. I did not want to jeopardize making my boyfriend his birthday cake and joining his family for dinner that evening. It's important that I let go and show the real me. I want to be a part of his family more than anything. 

The time came where we were getting ready to leave for his family's house and I crashed. I ignored the pain for as long as I could until I was tired. I lay in bed until the pain was not as severe, and I could get up and walk with a shuffle.

I was able to make him his birthday cake, and we ended up making it to his family's house for a nice dinner. Nothing comes without a consequence with illness. I had a difficult time concentrating and talking, and I wondered if anyone noticed. If they did noticed anything at all, it was probably my awkwardness, clumsiness and the periods of time where I became silent. At one point, I was sitting on the bench they have at the dinner table, and I decided to prop my leg up because my right ankle and hip were sharp and throbbing. I was talking with my boyfriend's sister in law, and I moved in some way that my knee shot out of the socket. My whole body froze, and my heart started to pound. I could feel my face starting to turn red and my eyes starting to tear. I quietly shifted my knee and it made a loud crack back into my knee socket. All while going unnoticed and still carrying on a conversation. 

I become extremely nervous around others while in pain. I know they can feel the nervousness too. This type of pain is hard to fake, and I have a more difficult time trying to 'act' healthy. Trying to cover it up makes me nervous because all I can think about is my joints being stabbed and pulled apart.

Then there's sensory overload. When you're experiencing a lot of pain, it's difficult to socialize because pain makes it almost impossible to think. "The more people in the room the greater the stimulus on your nervous system, and consequently your pain."
I'm becoming less social these days than I'd like to. It's difficult to engage with people while hurting all over (it's all you can think about) and I will then become quiet and end up leaving the room. It's not that I don't want to be around anyone because I don't like their company, but that I'm physically more comfortable in a room that's quiet.

I have a strong hold on acting healthy and pain free, it's a coping method and a way to avoid pity. Acting pain free one moment, and then not being able sit up right the next, is confusing to others and causes judgment. I don't always have the words to describe the pain I'm feeling. The severity of the pain ranges from tolerable, and able to carry out some activities, to intolerable where I can't speak.

It's not fun to surrender to pain, and when I have to, I like to do so in private, because it usually involves sadness, anger, and sometimes tears. It also involves telling myself that the pain does not define who I am, and I need to be kind and not hard on myself. 

Even the strongest are weakened by pain and tests the strongest souls.  It's a constant pull and pain changes people. The loss of abilities that once defined who you were, are powerful and sad. I have to try and regain strength everyday to overcome endless limitations, lack of living, and loss to not let it take over.