Hello my darlings! If you have ever wondered what it is like to live with chronic illness when you have busy weekend plans, than check out my new vlog on my Youtube channel! You’ll get to see what happens when my illnesses begin to act up and affect the plans I had made!
I’m sorry i’m such an inconvenience to you
Trust me, I wish I could do what normal people can too
I wish I could drive, I wish I could work, I wish I could go places alone
I wish I wasn’t constantly stuck home
I hate having to depend on everyone just to survive
The guilt and shame I have because of it makes me want to die
I hate that I make things so much harder for you
I wish you didn’t have to do the things I ask you to
But unfortunately my body and mind are just not alright
They don’t work like yours do, I always have to fight
And because of that simple tasks for you, are hard for me
I really just wish you would understand that and see
That i’m doing the best that I can
Trying my hardest to function
But most days are still tough and there are things I just can’t do
Still, I’m sorry i’m such an inconvenience to you
I know this poem is shorter then most of mine on here and maybe one day i’ll go back and revise/add to it but right now, I needed to just get my feelings out. When you live with mental and chronic illnesses that limit your abilities, it is very easy to feel like a failure and an inconvenience to the ones around you. It’s even easier when the people you have to depend on seem aggravated or annoyed when you ask them to do something, such as drive you to an appointment. My illnesses prevent me from being able to drive or go anywhere alone. This unfortunately has created many issues within my life and one incident recently is what inspired me to write the poem above.
I don’t want to be like this. I wish every day I could just be normal but that isn’t my life and I need to cope with that. I don’t think I will ever stop feeling like an inconvenience but reminding myself that I am loved and that I am enough helps some. So my message today is simply if you feel like this, please remember that you are not alone and that the people in your life love you. I know how hard it can be to deal with toxic manipulators, especially when they are your own family members, but just lean on the friends and family in your life who truly love you for the imperfectly perfect person you are and I promise you things will get better in time. ❤
Stay strong my beautiful darlings
Kaylee D. ❤
It feels like the darkness is engulfing me
I try to scream, but only a muffled cry is heard
Pain floods my body
Demons torment my mind
I feel numb and empty
Overwhelmed by the world around me
“Everything is just too much” I say over and over
As I sit on my bed in tears
The anxiety in me is strong
Causing my heart to race and my body to shake
Lately I feel tense all the time
Always on edge, as if expecting something bad to happen at any moment
The anger inside of me growing more and more
Causing me to lash out at the ones I love for no reason of their own
I feel like a ticking time bomb, just waiting for the tiniest thing to happen so I can blow up
My patience so thin anything has the ability to cause my borderline rage to surface
My inner child just waiting for a chance to unleash her pain and anguish on anyone near her
And most days, i’m powerless to prevent or stop the damage I know she will cause
It feels like i’m suffocating on the air I breathe because with each breath I take my chest aches
Waking up in the morning with pure dread, wishing I could just close my eyes again and go back to sleep
But even sleep doesn’t bring rest
No, sleep brings nightmares over and over
Realistic ones that make it hard to distinguish if this is real life or just a dream
Often causing me to wake up suddenly, yelling out for help
Never allowing me to wake up rested the next day
But instead tired and drained of energy
Energy needed to get through the day
My PTSD is also strong
Images flash in my mind of things I don’t want to remember
Making me cringe and suddenly feel overwhelmed with fear
In an instant, it’s like i’m transported back to those moments
Feeling all the same emotions I did during that time, emotions I don’t want to ever feel again but do over and over
I shake my head, begging the images to leave, but they don’t
Sometimes my mind shows me images of what could have happened instead, which is always worse then what I experienced
These images often make me cry out and tremble
Leaving me paralyzed for however long they decide to play inside my head
Like a horror movie I never asked to see but am forced to experience on repeat
With no stop button in sight to make it go away
I can feel my depression slowly start to creep inside of me
That feeling of hopelessness getting stronger and stronger each day
I feel miserable, hating the life that I am forced to live due to the illnesses that grip my body and soul
I feel disconnected from not only the world around me but from myself
Looking into the mirror and having no recognition of the broken girl staring back at me
Watching my wedding video with tears streaming down my face because I have no emotional connection to that happy girl in a wedding dress
Remembering that was the best night of my life but it feeling like it never even happened to me
I am lost, begging for someone to show me the map needed to get home but knowing no map like that exists
Only I have the ability to create that map and right now, I do not have the tools to do so
That creative spark inside of me that once shown so bright has grown dimmer and dimmer
With each trauma, each illness stomping out a piece of the light in my soul time and time again
Writing, once a safe place and therapeutic tool, now seeming so hard to even do
It’s like the once fluid connection from my mind to my hand has severed itself and no matter how hard I try, the ideas just won’t flow to the page with ease like before
Instead, I struggle to come up with flowing sentences and paragraphs, my mind feeling jumbled
The imagination in me that once created novels of greatness
Basically destroyed by the harsh reality that is life
Causing my novel ideas and half written stories to remain just that when I once believed they could become so much more
My only true escape is music
Music has always been something that allowed me to disappear from my world
I lean on music more now than I ever have before
Lately, Hamilton has become my number one destination
Constantly listening to and now even watching this truly unbelievable show
I listen to Lin’s poetic words being rapped and sung by angelic voices and in those moments, my mind is at peace
The usually loud voices in my mind that constantly project negativity are drowned out by music and words of pure genius
What it must be like to have a mind so brilliant it can create something so unique out of nothing else but history
But as I listen, I also think of Hamilton’s story
Longing to have that kind of drive, that kind of determination to become someone great
To be able to turn my pain into something beautiful, something that can help others
I ask myself, have I thrown away my shot?
Is it too late to become someone, to make a difference in this world
Or will I eventually die being known as the girl who was always too sick to function
I’m tired of my mind torturing me
I’m tired of my body always being full of pain
I’m tired of constantly being sick
Of having to cancel plans with friends
I’m tired of this life
But the sad truth is, no matter how many times I try to change things
I always fall back to this spot
I get to the top only to be there for a few moments before it’s down the rabbit hole again
Despite all of this, I still have a sliver of hope that one day, things will be better and will stay better
That I will make something of myself
That people will know my name and my story
That young girls and boys will be inspired by my determination to survive when I had every reason in the book to give up
That my failures thus far will pave the way to the biggest triumphs of my life
That Tom and I will have kids and I will be a great mother to them
I hold onto that hope with shaky but firm hands, even on the days where I desperately want to let go because giving in would be so much easier then fighting
But I know its that hope that keeps me going, it’s that hope that keeps me alive
So I hold on, and I will continue to hold on
Because despite everything, despite how shattered I may feel
I know my life is special and worth living
Life is a fragile but beautiful thing and even when the darkness is overwhelming
There is always a small flame of light illuminating within
At times, it may be hidden or harder to find but it is there
Guiding you, providing you with hope, even if you can’t see it
There is a void inside me. It’s been there for as long as I can remember. Most days the effects of this void are minimum. It’s like a emptiness that I know is there but isn’t really affecting me to a point where I can’t just ignore it. On the rare occasions, it even feels like it doesn’t exist at all. But then there are the days where the void’s emptiness is so overwhelming that it feels like i’m being swallowed by it. Like quick sand, the harder I try to fight the feeling of dread and nothingness as it begins to wash over me, the quicker it grows until I’m left sitting there, feeling numb and lost. Having this strong sense that I am longing for something but having no idea what that something could be. For years, I have tried to find that something that would fill this void but every time I believe I have found the missing piece to my soul, slowly the void returns, leaving an empty hole once again.
When I was younger, I remember I thought the answer to filling this emptiness was trivial things.
“If I could just own that purse, I will be happy”
“If he would just date me, I would feel so complete”
“If I could only own this type of pet, I would be filled with joy”
Of course, none of these things were the answer I was looking for. None of these things fulfilled me in the way I desperately wanted to be fulfilled.
I would also think maybe changing who I was was the right way to go. I would constantly change my appearance, my style, even my outlook on life, believing if I just kept changing things, something would stick and fill the void but that never was the case.
“If only I had long blonde hair, then everyone would love me”
“If only I was skinnier and wore tighter clothing, then the boys would notice me”
“If I get contacts, then i’ll feel beautiful”
But no matter what I did, in the end, I still felt empty. I still struggled to connect with the face looking back at me in the mirror. Knowing physically this girl was me but not feeling any emotional connection to her.
As I got older, I believed the answer I was looking for would be found in major life events. I was convinced that the huge changes that come into your life as you become an adult would surely be my solution. And on the day I married my soulmate, my best friend, it really felt like I had discovered the missing piece. Somehow, despite all I had been through and how broken I felt, I found someone who loved me for the perfectly imperfect person I was. Who knew my flaws better then anyone and still wanted to spend the rest of his life with me. Who looked forward to starting a family with me. Everything I had dreamed of as a child was now in my grasp. How could there still be a void after all of that? And for a while, it looked like I was correct. Like the void in me had been filled by love.
But as time went on, I noticed that void slowly begin to open once again. I watched as my health began to slip away and with each new symptom and diagnosis, the hole grew. I desperately tried to hold it all together still. I focused on filling my life with the things I loved and cherished. On building my family and the life I had always dreamed of having. Even after knowing I could no longer work due to my illnesses, I stayed strong. We rescued a tiny puppy and then, not even a full year later, I brought home my service dog prospect. Something I never thought I would need but once I knew I did, never thought would materialize. Yet, it had.
I thought it would work, but it didn’t. That void was still there, some days feeling stronger then it had in years. A sense of nothingness, of numbness. With my health failing me and being unable to provide for my family because of it, I thought if only I could get approved for disability. If that could happen, then I would not feel so much like a failure and that void wouldn’t feel so deep. I had always said I would be content being a house wife so getting disability would allow that to happen. How could that not make this void disappear?
But the day I got that phone call saying I was approved for disability, a wave of mixed emotions washed over me, both positive and negative. Something I thought was my answer seemed to make the void deeper somehow. Causing me to sit here more lost then I ever was before. Causing me to wonder, what in my life will fill this void?
Will having our own house and living on our own fill it?
What about getting pregnant and bringing my child into this world? Something I have dreamed about for as long as I can remember. Something that once felt so certain but now I fear everyday may never happen because of my health.
Will becoming a mental/chronic illness influencer and blogger do the job?
How about an author? Publishing my poetry and novels for all to see.
Or am I destined to always be longing for this something? To always feel like there is a piece missing from my life. To feel numb, empty, longing for true happiness.
And then my mind begins to fear that I gave up something that was the answer, either by choice or due to my health.
Would have completing a 4 year degree and becoming a teacher been my answer?
What about becoming a school psychologist and a theater director? Would that had helped?
What if I followed my dream of being an actress?
Would that kind of stardom been the missing puzzle piece to this jigsaw I call my life?
I guess i’ll never know for sure. But man is it hard not to wonder.
On days where the void is so strong, it’s like it’s hard to even take a breath. Because with each breath, this sense of emptiness is overwhelming.
And the last thought that crosses my mind is where did this void even come from?
What burned a hole so big into the soul of such a happy little girl? Because that is what I was as a kid, always smiling, happy as can be and just living her life to the fullest. So what happened?
Was it my dad and mom divorcing when I was just 5 years old? My dad telling me he was leaving after giving me such an amazing day.
Was it hardly seeing him after that, even though at the time, he only lived 10 minutes from me?
What about my mother? Someone who was physically there for me and tried to give me the best life she could but often acted more like a best friend then the mother a child needs. Could that have done it?
Or did it happen after my grandpa passed away, right before I would turn 13? Surely losing a father figure in your life, someone you saw every day, at a time where you desperately need guidance could create such a hole.
What about the bullying I went through? Elementary, middle, and of course, high school. Always the same old thing, never feeling good enough, always being put down or made fun of for my appearance or personality. Taunts of “Teachers pet” still ringing in my ears. Having friends you would do anything for putting you down time and time again. Getting betrayed and hurt over and over.
And then there are my relationships. Could they have contributed to the crater that wrecks havoc in my life?
My first love being an on and off again roller coaster ride. Always jumping between me and another girl, always feeling like a second choice but so in love that I was content with not being first.
And then my second love leaving me with so much mental and emotional damage. Accepting the fact that the love you had for him blinded you to the mental and verbal abuse you put up with time and time again. Giving him everything, every part of me and receiving nothing but hurt in return. The words he’d say still piercing my heart, like a snake’s fangs. Words that I believed were true. Words that I sometimes still believe are true. Something so simple triggering me, reminding me of how worthless he made me feel. But remembering I would have done anything for him because my love was that strong.
Could that have been what caused the ground to break?
And then there is my health. Being plagued with not one but two autoimmune disorders as a young adult. Unable to do simple tasks such as brushing my hair anymore without pain. Is that what caused this deep void within me?
Maybe. But more than likely, it is a combination of all of the above plus more that I experienced that has created this hole in my soul.
Maybe the answer isn’t finding something to fill the hole, but rather, letting go of all these traumas I have gone through in my 24 years of life.
Maybe if I can face these demons that I have locked behind a door and let them go, I would feel free.
Maybe by accepting what has happened to me, understanding they have made me the person I am today and also realizing I am not in those situations anymore, that I am safe now, will cause the void to begin to close.
Maybe I can start feeling what true happiness is without having this crushing weight of my past on my shoulders. A weight that feels as heavy as cinder blocks constantly dragging me down.
I don’t know if letting go is the answer I have been searching for. I don’t know what that answer is but I do know, that is the next step I am choosing to take.
It’s time to stop holding on to my past.
It’s time to stop obsessing over how I thought my future would be.
It’s time to forgive my younger self for the mistakes she made and remember, I am not that same girl today.
It’s time to forgive the ones in my life who have hurt me.
It’s time to move on.
It’s time to let go.
Autumn is officially in the air! The temperature is dropping, the leaves are slowly falling and almost every store you walk into you’re met with Fall & Halloween decor. Fall has always been my favorite season. I think one of the biggest reasons why is because Fall is the kickstart to the best time of the year! Once it’s Fall, I know that soon it’ll be Halloween, Thanksgiving and then finally, Christmas!! Fall is also my favorite because there is always so many fun activities to do during this season. If you’re someone who suffers from chronic and/or mental illness though, sometimes it’s hard to truly enjoy all Fall has to offer. I know for myself, if it’s not because my body is in so much pain that it’s hard for me to really move, my anxiety takes hold of me a lot and causes me to be too scared to even want to leave my house. This often ends with me missing out on making so many memories. With how my health has declined this year, the fear of missing out on all my favorite season has to offer is strong. But I refuse to let my illnesses ruin my Fall. So I decided to write down everything that I wanted to do this Fall that I believe my body will be able to actually do. I then broke up that list into three different sections based on the energy level I feel is required to complete that activity. I think one of the most important aspects when it comes to doing activities with chronic and mental illness is thinking of ways that will help you to be able to truly enjoy those moments without pushing yourself too far. By dividing my list, not only does it help me to prepare for certain activities but it helps me to better plan out my Fall so i’m not doing two high energy activities too close to each other. This will hopefully prevent me from burning out my body and help me to actually enjoy this beautiful season. Below, you will find my entire list but the focus of today’s blog post will be on the first part of that list, Fall activities to do that require low energy. In the upcoming days, I will do the same thing but with the next two sections so stay tuned for that!
My 2019 Fall Bucket List
- Have a Halloween Movie Night
- Have a Scary Movie Night
- Bake Halloween Pillsbury cookies
- Read 2 scary and/or Halloween themed novels
- Dress up in a cute but comfortable Halloween Costume
- Listen to Halloween themed music
- Create a Gratitude Jar
- Carve Pumpkins
- Decorate for Fall/Halloween
- Bake a Pumpkin Pie
- Go for a Fall foliage drive
- Go Pumpkin Picking
- Go to Fright Fest at Six Flags
- Host Friendsgiving
- Go to the Great Pumpkin Blaze
- Have a Fall-themed photoshoot
As I stated above, today’s focus is on the first section of my bucket list, low energy Fall activities. I wrote low energy instead of no energy because, let’s face it, when you live with chronic and mental illness, even just breathing requires energy. For me, a low energy activity is an activity that is done within your home that does not require a lot of movement. So with that being said, let’s jump into each activity in more detail, as well as provide all of you reading with some tips to make these activities even more enjoyable!
- Have a Halloween Movie Night
One of my favorite things about Halloween time is watching Halloween movies! I absolutely love watching all the different spooky movies throughout October but this year, I want to take one day/night and gather all of my absolute favorite Halloween movies and watch them in one sitting. These movies include Hocus Pocus, Nightmare before Christmas, Beetlejuice and The Haunted Mansion. Some tips to make your spooky movie night even more perfect include:
- Wearing comfy clothing or Pajamas (Even better if they are Halloween themed)
- Cuddling up in a big comfy blanket
- Drinking Hot Coco (or whatever your favorite hot beverage is)
- Eating your favorite sweet or salty snack
- Watching the movies with a friend or significant other (everything’s better with a buddy!)
Having a Halloween movie night is one activity on this list that I am particularly excited about because it allows me to have a nice cozy night at home with my husband while also celebrating everything that makes Halloween the amazing holiday it is!
- Have a Scary movie Night
Going along with the whole movie night theme, another fun idea for some is to watch scary movies during the Halloween season. Now I’m not a huge scary movie girl. I honestly usually hate scary movies and tend to avoid them at all costs. With that being said, this year I really did want to push myself out of my comfort zone and since my husband has been wanting to watch scary movies with me since we began dating, I decided that maybe now was the time. So to add a small twist to this, especially if you aren’t a fan of scary movies, you could have your significant other or a friend pick out 1 to 2 scary movies of their choice for you guys to watch. The catch is, you can’t say no. Tips to make this experience a little bit more enjoyable (and tolerable) include:
- Wearing comfy clothes or Pajamas (Again, Halloween themed are the best)
- Setting ground rules for what movie(s) can be chosen (For me this is no horror movies based on real life events)
- Eating your favorite snack (Helps distract you from the terror on the screen)
- Cuddling up with a big blanket (To hide under during the super scary scenes)
- Watching with a buddy or significant other (Never watch a scary movie alone, plus you probably wouldn’t be doing this if it wasn’t for them)
I won’t lie, this is one activity on my list that I am scared about but it’s also something I know my husband is excited for and therefore, makes it a little less terrifying…I think..
- Bake Pillsbury Halloween cookies
I don’t think I am alone in saying Pillsbury cookies are some of the best cookies out there! Not only are they delicious, but the fun designs really help you to celebrate the season. Now I will admit, they can be a tad pricey but I think it’s worth the price at certain times during the year, Halloween being one of those times. This year, I plan to pick up both a package of the pumpkin ones and the ghosts ones and take one night, probably the Halloween movie night, where my husband and I make and eat them. Even though you have to bake them, I consider this to be a low energy activity because all you have to do is take them out of the package and put them on a cookie sheet. This is just another reason I love them because since they are pre-cut, it is a lot easier to bake than other cookies. I really don’t have any tips for this one because it’s already pretty simple and easy but like before, baking these with a buddy will definitely add a little extra fun to the whole thing and wearing comfy clothes is a must.
- Read 2 scary and/or Halloween themed novels
I have always loved reading. For me, reading allows me to escape my reality for a little while and when your reality is filled with being stuck in bed due to pain, sometimes being able to bury myself in a book is exactly what I need to keep my spirits high. Since it is spooky season, I decided I really want to read 2 scary and/or Halloween novels before Thanksgiving. Normally, I would say before Halloween but lately, my brain fog has made reading for long periods of time more difficult so I have given myself a more realistic time frame. Again, it’s all about adapting to make things easier for you. Some tips to make this one more enjoyable include:
- Wearing comfy clothing or Pajamas (Especially fuzzy socks!)
- Choosing a book you’ve never read before (Though re-reading books is always enjoyable, picking something new will provide you with a whole new experience)
- Choosing an author you’ve never read before (Again, reading work from someone new provides you with reading a whole new style of writing which could be fun)
- Read somewhere where you can be alone and not interrupted (Few things are worse than being interrupted when you’re in the middle of a good book)
I might not be a fan of scary movies but I do enjoy a good scary novel so this is something I’m excited about. Who knows, I may even discover a new favorite book or author along the way.
- Dress up in a cute but comfy Halloween costume
One of the best things about Halloween is being able to dress up in costume. For one night (or multiple nights of the season), you can dress up as someone completely different than yourself and no one is going to judge you for it. Dressing up in costumes is definitely one of the main reasons why I love Halloween so much. But often in the past, the costumes I would choose wouldn’t be that comfortable or warm. Living in New York, wearing a tight, short dress with no sleeves isn’t exactly the warmest option I could have worn. I already knew that getting a typical costume this year wasn’t really an option due to both money and also just the way my health has been. But this in no way is going to stop me from dressing up. So what are my tips for choosing a cute but comfy costume? Well:
- Wear a onesie (This is the option I am 95% sure I will be choosing this year. Not only are onesies extremely comfortable and warm, nowadays you can find onesies for every character or theme you can think of! Plus, when Halloween is over, you can still wear your onesie at home which makes it a more practical option and cost effective option)
- Don’t wear anything too tight (If your costume is too tight, you will not be comfortable and therefore, you will more than likely not be able to enjoy your Halloween night as much as you should)
- Choose a costume that is weather appropriate (Again being too cold or too hot can cause you to be uncomfortable which will affect your night. Often with chronic illness, extreme temperature can also cause pain or flare-ups and that’s definitely no fun)
- Choose a costume you feel comfortable in for long periods of time (Not comfortable=not a fun night)
I have known since Endgame came out that I wanted to be spiderman this year. I haven’t fully decided yet whether I will chose the spiderman onesie as my costume or purchase an actual spiderman bodysuit but either way, I know my whole body will be covered and both options will be much more comfortable than costumes I would have chosen in the past. Dressing up is something I am super excited about this year and can not wait to show you all how my costume comes out!
- Listen to Halloween music
Music truly is the best medicine. I would be so lost in this world if I didn’t have music in my life. One of my favorite things to do each holiday season is create a themed music playlist on Spotify to listen to throughout that season. So of course, making a spooky playlist is a must do on my list. Instead of tips for this section, here are just some songs I’ve included on mine to give you an idea. They include:
- Anything Rocky horror
- Anything Nightmare before Christmas
- Classic Halloween songs (Monster Mash, Spooky Scary Skeletons, I put a spell on you, etc)
Music is a way to express oneself and what better way to express your love for this season than with some spooky music. My go to places to listen to my Halloween playlist is at home when I’m cleaning and any time we are in the car. If you would like me to do a whole post about every song I’ve included on my playlist this year, let me know in the comments below.
- Create a gratitude jar
This activity is actually one that I won’t begin until the first of November. I had seen something similar on Pinterest and thought, with everything that has happened this year, creating a gratitude journal is exactly what I could use right about now. So basically, every day leading up to Thanksgiving after November 1st, I will write down one thing that I am thankful for. Than, on Thanksgiving night, I will open up my jar and read all the things I wrote. It’s very easy when you live with chronic and/or mental illness to lose sight of all the good things in your life. But even on our worst days, there are always things to be thankful for. Some tips I have for this include:
- Decorating your jar (You can choose to decorate it for Fall or any other way you would like)
- Choose bright colored paper (Bright colors just ignite more joy than plain white)
- Really think about what your thankful for (Nothing is too little)
By creating this gratitude jar, I will be reminded of how lucky I am during a season where nature even shows us how beautiful it is to be alive.
So there you have it, the first 7 things on my Fall 2019 bucket list that require low energy. I hope you enjoyed this post and if you did, please hit that like button! If you want to see more, especially the next 2 parts of this series, please give me a follow that way you know when my posts go up.
Alright, until next time my darlings,
Kaylee D’Ascanio ❤
Extreme pain shoots through my upper back.
My fingers are swollen and sore and my legs feel to weak to walk.
I try to sit at work but the pain is getting to be too much for me to handle, too much for me to hide.
I need to walk away for a moment, I need to go somewhere I can be alone.
I rush to the bathroom.
Once there, I start to cry. I don’t want to cry but the pain is too intense.
Even more, the thought of dealing with this for the rest of my life scares me more than words can say.
Knowing this will always be the case, knowing this will always be my life.
How do I ever expect to live a normal life when these diseases keep taking over my body. Inhabiting every joint, every muscle.
Normal tasks like brushing my hair are even too much to handle. I struggle to open my water bottle because my fingers refuse to work.
With each letter I type, I feel my fingers burn, causing tears to hit my eyes because writing is my life. How can something that brings me so much joy cause pain to my body?
I’m so tired, so exhausted all the time. I don’t have energy to do the things I once loved to do. Some days, it’s a struggle to even get out of my bed. My body feels like a rock and the more I try to pull myself up to get ready, the heavier my body seems to become.
People ask why i’m so tired all the time, they ask me why I struggle to keep my eyes open.
Concerned that i’m not getting the proper amount of sleep but don’t they understand it doesn’t matter how much sleep I get, I will always be tired. Because my exhaustion is not from being sleepy, no, instead my exhaustion is from the constant struggle to just survive in a body that constantly wants to quit.
This pain, though, also keeps me up at night causing constant insomnia, that only increases the exhaustion I feel.
I long for those days from my childhood. The days before Arthritis and Fibromyalgia invaded my body. I long to be that girl again whose body never kept her down. Who could run and play for hours without having to worry about not being able to get out of bed the next day. Who could keep up with everyone else instead of fall behind due to the pain in her knees being so bad she can’t possibly keep up their pace.
When I have a flare, thoughts of being wheelchair bound by the time i’m 40 start to stir in my head.
Thoughts of not being able to hold and play with my children haunt my life.
How can I tell my child “Mommy can’t hold you today because she is in pain” when they’re reaching out to me?
This thought constantly makes me just want to cry because it’s the realization that I will always be suffering.
I’m sick of disappointing the ones around me. Of having to cancel plans or change plans because my body just can’t do what everyone wanted to that day.
I’m sick of coming in late to work or calling out completely because I physically can’t move that day.
Sick of having people say to me, “Well, you don’t look like your sick or in pain” when in reality it feels like i’m dying and my entire body is being constantly tortured by itself.
The fear of things never getting better, the fear that it will only get worse from here is constantly on my mind. Even on the days I feel good, that fear pricks my mind, reminding me that this feeling won’t last.
I’m usually good at hiding this fear. I’m usually good at pushing through the pain and doing my very best but days like today, day’s where the weather is bad and i’m having a full-on flare up, I can’t help but break my usual facade.
I’m scared, i’m hurting and i’m just so tired of fighting.
And though I know I need to just remain strong, some days, it’s so hard to see the light when i’m surrounded by a sea of darkness.