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!
New Youtube video is up! I talk about why I stopped creating content and my hope for the future of my channel as well as bring you along with me to the eye doctor where I actually was told good news for once! 🙂
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
All lives matter, this is true
Except if mental and chronic illness plagues you
Except if you’re a woman, trying to find your way in this world
Except if you’re a boy who loves a boy, or a girl who loves a girl
Except if your skin is not the color of white
Except if you’re homeless and have to sleep outside at night
Except if you’re Trans, Queer, or Bi
Except if bullying causes you to commit suicide
Except if you’re an animal, except if you’re a plant
Except if you’re an insect, like a tiny ant
Except if you’re in a pandemic, and the chance of the illness hurting you is small
Those lives don’t matter, the virus is only killing the old and already sick after all
Except if you’re an immigrant just looking for a new life
Except if you’re deaf or have no sight
Except if you’re someone who has been assaulted, raped or abused
Except if you’re an addict to drugs or booze
Except if you’re disabled, poor or old
But all lives matter is what we are still told
Hello my beautiful darlings!! I know it’s been months since I last posted and I apologize deeply for that. A lot has happened in my life these past few months, some bad and some good, that I can not wait to update you all about! I have spent the last few months really trying to figure out my health and what I want for my future. Everything keeps reminding me that what I want most of all right now is to be able to share my story and help others out there who are struggling. That is why, I have renewed my blog and have finally created a Youtube channel!! This is something I have wanted to do for years but was always too scared to do so! However, I finally have created my channel so if you want to see me on a whole new platform, please check that out!
The other giant news I have to share with you all is that I have recently picked up my potential service dog! This is another thing I never thought would happen but finally has! Obviously, I will be writing all about him and our training adventures since I will be owner training him, under the guidance of a professional trainer. There is also a video up on my Youtube of us picking him up and his first 48 hours with us you can check out if you want!
I know my blog looks different right now, at this moment I am using the free plan but in the near future, I do plan on upgrading back to premium so I can get my old layout back.
I’m hoping to really be able to dive back into blogging and hopefully bring some joy and hope into people’s lives along the way!
Until next time,
Kaylee D. ❤
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 ❤
Today is one of those bad days. Those days where I can hardly move without pain shooting through every part of my body. I haven’t had a bad pain day like this in a long time so immediately felt discouraged when I opened my eyes and realized every bit of me hurt. I had a list of house work I had planned to complete today. I still had to put away the clothes from the laundry I did yesterday, I wanted to straighten up and organize the corner of our game/living room, and planned to make Tom and myself a nice chicken dinner. However, all my plans for the day were suddenly halted and I knew I would be stuck in bed instead all day.
This is the reality of living with a chronic illness. You never know how you will feel day to day or even hour by hour. You can make an entire plan but if you wake up that day sick and in pain, your plans are completely changed and there really isn’t anything you can do about it. Sure, sometimes you can push through but not without consequences. If you push your body when you’re already having a bad pain day, it will only end with additional days stuck in bed or even worse, a trip to the hospital. When you live with chronic illness, you must always be aware of your health and how to take care of yourself. Self care must be number 1. But this is easier said than done.
When I got up and realized I would get nothing done today, the familiar feeling of failure and depression crept up and I just wanted to cry. At 23 I don’t want to admit I can’t do normal everyday things all the time. I’m not okay with not being able to do stuff. But no matter how strong those feelings are, I force myself to remember that if all I do today is survive, then that’s enough. On days like today, all that matters is that I took care of myself and did the things necessary for my health and well being. This is something crucial all people suffering with not only chronic but also mental illness need to remember. Healthy people don’t understand what it takes just to keep breathing in a body that wants to destroy you. If they knew what it took, I guarantee they would start looking at us all differently because they would realize we are constantly fighting just to survive.
So the point of all of this is that I know it can be frustrating and demoralizing when chronic and/or mental illness prevents you from doing normal everyday things. I know for me it not only makes me feel like a failure of a wife but of just a human being in general. But what’s important is knowing that you are doing the best you can with the life you have been given and on days where just walking up the stairs makes you cry out in pain, all that you need to do is take care of yourself and keep breathing. And if that’s all you can do, well, that’s more than enough. Tomorrow is a new day, that list can wait, but your health can not. Just keep staying strong and never lose hope that things will one day get better
Until next time my darlings,
Kaylee D. ❤
My physical health has been up and down these last few weeks. I have my good days where I can get work done and enjoy life, but I also have my really bad days where I can’t get out of bed without feeling faint and dizzy. My mental health, on the other hand, has been consistently rough. My anxiety has gotten severe and even though I didn’t realize it at first, so has my depression. This is heavily due to the fact my future has been on my mind a lot lately, especially one certain aspect of my future; having kids. For as long as I can remember, I dreamed about becoming a mother. Tom and I had always discussed having children in our early twenties, shortly after getting married. But being diagnosed with Lupus has turned our entire plan upside down.
The reality is that having Lupus does increase my chances of miscarriage, birth complications and even infertility all together. Yes, I know there are many women out there with Lupus who have children and had problem-free pregnancies but there are also many who have not. Just knowing that we could have problems getting/staying pregnant and there is a chance we may never become pregnant at all is a thought that honestly breaks my heart. Before this diagnosis, we had a plan. Shortly after our 1 year anniversary, we would begin to actively try for a baby as long as we felt we were in a financially good space to do so. But now, that can’t happen. I need my health to be in check before we even consider trying. But we are also still on a timeline because the older I get and the longer I’m on my medication, the harder pregnancy will be for me and the risk factor goes higher. It is so hard to hear friends and family ask me, “so when will you guys have a baby?” knowing that I don’t know that answer anymore. It hurts having to explain why we need to wait and even explaining how it may never happen biologically for us. I always feared infertility issues, always scared that my biggest dream wouldn’t be able to come true for me. I wish I could get testing done now, to know before we start to try and have to experience heartbreak over and over again if it turns out that I can’t become pregnant or hold a pregnancy. But doctors won’t run those tests unless it’s necessary.
I thought by 24, I would be pregnant with my first child or already have a child. I never thought by 24 I would be diagnosed with Lupus, uncertain if I ever would be able to become a mom. I’m trying my hardest to turn this diagnosis into something positive, to use my experiences to help others. But some days, it’s just so hard to look on the bright side. I feel like I’m grieving, I’m grieving the life I had and the life I thought I would have. The life that was robbed from me by this illness I never asked for. I still have big dreams, dreams that I want so badly to come true but I always fear that my mental and physical health will keep me from ever achieving them. I feel constantly trapped, having to rely on everyone for everything because I can’t do things myself anymore. I can’t drive, I can’t work, hell, some days I can’t even make it up the stairs without help! When I go out, I constantly have to monitor how I’m feeling, often going through periods of lightheadedness and just an overall underlying panic of something going wrong. I won’t even go anywhere if Tom, my mother or my grandmother are not with me because at least I know they understand and they know what to do if god forbid, I get really sick out of nowhere. It sucks having to live like that.
People keep telling me that “it could be worse” and that “I’m going to be okay” and though I know they are right, some days I don’t want to hear it! Because the truth is, yea, it could be worse but this freaking sucks too! And I have every right to be angry and sad about having my independence ripped away! Than on the other hand, I have people compare my illness to others with the same and that hurts worse because everyone deals with illnesses differently and everyone experiences different symptoms. Just because one person is able to work and drive with Lupus, doesn’t mean that I can. I’m trying my hardest but I also can’t risk my life and my health getting worse. I’m at my breaking point as is and basically being told I’m not trying my hardest, that I’m being lazy and using my Lupus and anxiety as an excuse, it’s just beyond heart wrenching and makes me want to cry. Because I am trying my hardest, I’m pushing myself as much as I can.
I’m not happy with my life but I refuse to just give up. I guess I just need to continue taking everything one day at a time, hold onto faith, and no matter what, stay strong. That’s the only way I’ll get through this challenging time. Friends and family tell me how strong I am and how well I have handled this. But the truth is, what other choice did I have? I either let this break me or grow from it. And even on days like today, where I’m deep in my head and am feeling so discouraged, I know I won’t let this shatter me.
Until next time,
Kaylee D. ❤
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.