Life sometimes seems Ever lasting. One day time seems to drag on, the hours tick by so slow. Other days time feels like my enemy. I’m racing a inevitable hourglass that will soon end. I’m running out of time and haven’t accomplished half the things I hoped to. When we die who is left to remember us? Our children? Our children’s children? But after them what then? Our names will be slowly erased from the world itselfs until there is nothing left of us except bones in the ground. Maybe in a couple hundred years they will stumble across a cemetery a “ancient burial ground” and drag our corpses from the dirt and examine them. Like so many do now. They will try and discover things about “they way we lived” and “how we died” based solely on our bones. We are nameless. In two thousand year what will become of us then? We will have Been like a piece of sand on the beach. There were millions before us and there will be millions after us. How do I cope with this knowledge? Knowing we will be nothing.
Poems from a depressed person
It’s been so hard for me to catch my breath. I feel as though I am drowning in broad daylight, surrounded by people who don’t notice. I go through the motions of life. I put on the swim suit, I climb in the water, and I swim alongside other’s just like I was taught to do. The other’s ignore me as I battle to stay above the water like, they were taught to do. Ignore the glaring problem. Ignore the cries for help from others. They know the warning signs. They know how to rescue you. They just have been taught to put on blinders. Someone please notice me drowning and pull me up for air.
Inspiration
Being chronically ill comes with experiencing alot of emotions, most of them not positive. Most individuals expect us to be positive. I have encountered alot of individuals telling me how brave I am or how I am a hero or inspiration. I am not a hero, nor am I brave. I was dealt this life and I have to live it. I do not have a choice, that does not make me brave or heroic, it makes me human. I appreciate the complements and the individuals who are saying these things out of kindness and ignorance. I realize that when people see someone living a life that they deem hard or “unbelievable” they feel that the person is stronger than them. In reality that person just does not know life any differently. Humans can adapt in any situation, especially when they don’t have a choice. I appreciate the kind words and encouragements but sometimes I think those words should be reserved for people who actually have done heroic things.
Medical Products
As someone who has to purchase medical products I know firsthand how expensive it can get. I will be listing products and links that have helped me! The links are on amazon so you do not need to go out to get them.
This is a cheaper alternative to purchasing mask from name brand stores. https://amzn.to/3y6sah0
This pulse Ox machine is perfect to monitor your heart rate and oxygen levels. This is perfect for someone who is having trouble controlling there heart rate and need to track it. https://amzn.to/3k6Z6Re
These salt pills are perfect for POTS or any other chronic illness. I personally take these pills 5 times daily. https://amzn.to/3k6Z6Re
Disney world disability accommodations
Before any big trip we all feel some form of anxiety. It could be about how our bodies will react. How will we navigate the parks. How accommodating is the location. Etc. I felt all these things and more when we were planning a trip to Disney world. I looked online and found very little videos or articles about navigating the parks and what I could bring or do to help with my comfort. I decided to make post about each particular issue I think would of been helpful for me to know before heading to the happiest place on earth.
1. Use a wheelchair. If you have any form of disability you can benefit from using a wheelchair at the parks. You can rent them from the park or bring your own. The reason I think you should bring one is because there is a lot of people at the parks. This could trigger panic attacks, becoming over stimulated or being lost. When you become overwhelmed sometimes the best thing to do is sit or leave a situation fast and using a wheelchair in those moments can help you. The lines are very long at the parks so having a place to sit can help with preventing a flare or over doing it.
2. Check out Disney’s Disability access service (DAS) Disney has a program where you can check into rides and wait in another location for a return time. This is not the same as a fast pass and you do not get to skip any lines. This allows you to wait for the ride in another location other than the line. This can be good for someone who has trouble standing or waiting. When my blood sugar drops I need food immediately so waiting in line can cause issues. You can get the DAS by heading to customer service as soon as you enter the parks and explaining you would like a pass. Due to hippa violations they can not accept or look at any medical documentation so you need to communicate verbally with the case member. I suggest getting there at parks opening as lines begin to form fast.
3. Bring extra water, snacks and cooling devices. Disney allows you to bring in your own snacks and water/drinks. When you are outside at the parks it gets really hot. Florida is very humid and it can be unbearable if you aren’t prepared. Having access to snacks and water is a great way to stay hydrated. You can bring a small hand held fan as well.
4. Communicating with cast members On every ride you will be asked “are you ok to walk a few steps”. It gets repetitive and annoying but it’s important because it effects how you will be able to board the ride. If you can not take steps then you can do a transfer and have access to your device ride up to the ride. If you say yes you may be asked to leave your wheelchair and walk a few steps. I have said yes and ended up standing for 10 minutes and then walking about 100 feet to my wheelchair which was extremely uncomfortable and painful. This is true for the new star wars ride at Hollywood studios. They asked me to leave my wheelchair but I said no and timed how long before we boarded to see how long I would of had to stand/walk. It was 13 minutes. This can be a issue so make sure you are communicating your needs with staff members.
5. Have fun! If this is your first time using a mobility device it can be nerve wracking. Most people do not care and if they do care they rarely say anything. Have fun don’t care what other people are thinking they are all there to have fun as well. Make sure to take the precautions above to ensure a safe and healthy trip.
10 days admitted to the hospital
Mental VS physical Illness
“Mental illness is not real you are just sensitive” “If you pray you will feel better” “You need to be happy with your life” I’m sure as a mental illness warrior you have heard these statements at least once in your life. They can be disheartening and hurtful. I’m here to tell you, you are valid. Mental illness is just as real as a physical Illness. The example I give to people who have a hard time understanding is, if someone has a flu you would expect them to go to the doctor and get treatment. Why would you think someone who suffers from mental illness should be treated differently. I’m here to tell you that you are valid, you are strong, you are enough. Keep fighting. Keep your head up.
5 Things I wish I knew before I was diagnosed.
1. just because you don’t have a name for it does not mean it isn’t real. You may feel like you are going crazy. You may even think “is this real” but I assure you it is. You are a warrior and keep fighting.
2. You are your biggest advocate. There are going to be times where you want to say something to a doctor or nurse and you don’t. Do it. Say it. You know your body better than anyone.
3. There is support for you. If you are feeling alone know there is others who can understand. Reach out on social media. Join support groups on Facebook, or instagram. There is a community out there for you.
4. Do not settle for less. If you feel like you don’t deserve basic human wants and needs then you need to change your mindset. Do not settle for anything, jobs, friends, or family. If someone does not support you or your needs you need to find someone who does.
5. Do not be afraid to post or talk about your struggles. You may feel ashamed but don’t. You sharing your story can help build your support group. You could also help someone else be inspired to get the help they need and deserve.
5 things to never say to a chronically ill person
1. Never tell them a cure you think you know. I can guarantee that they would know if there was a cure available to take away there pain. Even if it comes from a good place, do not tell someone ways to deal with there illness.
2. Do not make them feel that they are a burden. Physical illness can also lead to mental illness and making someone feel like a burden will not help there self esteem.
3. “I heard yoga can cure you! Also there is this diet that might help, also here is a book about natural foods that will help” this goes back to number one. Please do not give advice about managing a illness unless you are a medical professional, or have suffered from the same illness and want to share things that worked for you.
4. Do not say “but you were sick yesterday” chronic illness is for life. If it was easy to wake up feeling better they would.
5. “You are just lazy” imagine you are sick with the flue and on top of that you also have to carry around a bag that weighs 10 pounds in the heat, that would make you a little bit slower or not able to complete all the task you would like. Chronic illness warriors aren’t lazy, they are more likely to damage them self’s trying to accomplish something.
The anxiety of dying to soon to accomplish all I want.
Every time I think about things I want to accomplish I get a jolt of anxiety. Before I became sick I used to get a jolt of excitement. There is so many things I want to do in this life and I get afraid I won’t be able too. I want to make a YouTube channel, I want to foster kids, I want to write a book, I want to travel the world. There are so many dreams I have that the list goes on and on. Every time I have a free moment I find it hard to rest. When I’m laying in bed I get filled with dread. I could be doing something more productive, but I’m to tired or ill to get up. When I’m trying to sleep to heal I feel a pit in my stomach calling me to take action. This has caused me to injure myself and push myself to far and end up hospitalized. One thing that was hard for me to learn was limitations. I would always compare myself to others my age. I would try to keep up and do all the things to seem normal and then I would be so sick I’m in the hospital for a week. I worked a full time shift and a full time student. My job was not a easy one either, a manger at the busier fast food chain. Chickfila. I was scheduled 10-12 hour shifts daily and if I called out sick or said I needed rest I would be criticized and told that others would suffer without me. I remember I was so sick I called out of work and they harassed me until I came in for 2 hours to close money because someone had a date to go on. I left that shift barely being able to walk and my boyfriend had to get me and take me to the hospital where I was admitted for 9 days. I never got a apology or even acknowledged that I should not of came in that night. There is a lot to that job that I don’t really want to get into in this post but I will another time. I had to drop out of college two semesters in a row from being too ill to attend. I could not find a balance of rest and work. After my last 9 day stay I knew something needed to change. My one supervisor convinced me that it would be wise to drop out and focus on work. I listened. A few weeks after I cried in my car and broke down. I was tired mentally, and physically. I could not handle the stress and my body was slowly breaking down. I cried out to God “I’m here send me, open doors please I will follow” and he did. I switched jobs and my health has been way better. I still get overwhelmed with the anxiety of not being able to do all the things I want. I have worked on resting when I can and life is not all about what I accomplish here. It’s more than that.
Fighting The Rare 