I was reading a page called “one room world” or something to that effect and it was about a chronically ill woman who had lived in her room for several years due to her health. As I read, I could see the similarities in our lives and thought that most people really have no concept of what having a one room world is like. This young lady is inspirational and a survivor and she motivates even me to keep fighting to live life as full as I can.
I told someone the other day that I fight so hard to get up on my feet for a few steps because there is a HUGE difference in being able to stand briefly and put yourself in a wheelchair and not being able to move your legs at all and having to be pulled and dragged into a power chair or wheelchair.I have been at both points in my life and each time that I found myself sinking into the “can not help myself get into a chair” category, I fought even harder to regain those few steps.
There is a HUGE difference in being home most of the time and going out occasionally to do something other than doctors. The difference is that one can still get out of the house even if someone is taking them for a short while and visit friends or go to some place and eat, etc and they pay dearly for those trips but are willing to make them occasionally in spite of the pay out that comes with it. And the other one that does not leave their house or their room except for doctors because the pain is too severe, they are too weak and leaving their rooms is not worth the payout and those that are room bound are usually bed bound. There is a difference in that too in that staying in bed all day is not the same thing as not being able to leave the bed all day.
But, living in a one room world does not mean we are unhappy or that we never have anything good come our way. Most of us rely on the computer as our window to the world and we have learned to use our minds in a greater capacity than most and can visualize what most can not. I not only can visualize dancing, which I love and used to do weekly, to the point that I feel the motion and feel the air move around me as I mentally dance.
So many of you have been with my blog and followed my journey as I fight to keep going and to keep the joy in my one world room and am fighting to at least expand my room to the kitchen and even patio in my power chair. You have encouraged me, inspired me and walked with me and have made my journey easier just by your presence.
Down on the right side of this blog page are pictures of my one room world and you will see it is a room filled with treasures, colors, things I love and things that distract me like the chines on my stained glass ceiling light. Son picked that out when we moved in here because he said it would give me something to enjoy looking at when I was hurting so badly. And it has been.
Yes, my one room world has medical stuff all over like the hospital bed, oxygen tanks and oxygen concentrator with green hoses running from them, forearm crutches, braces, power chair, rolling shower chair and roll in shower, needles and medicine bottles..but if you look at the pictures…hopefully you will see what I see..which is an eclectic room filled with treasures of which many are gifts given to me to make life easier, encourage me, inspire me…like the Native American fleece blankets I have on my hospital bed that brighten my room and are so soft they help my pain, or the cloud book that I love looking at or the cards sent, or the reborn dolls, or the dream pet that shines my stars on my ceiling for me..things of love and reminders that I am a real person…not a “chronically ill” person…but a real person with real dreams and wants and desires who has learned to live in her one room world. A real person who chooses to not focus on being chronically ill but rather focus on being a survivor, a warrior that puts on her wonder woman headband and starts the fight over each day and sometimes starts over several times a day.
image from www.comicvine.com
Expectations are what we place on others or people and are this idea we have in our minds as to what we expect in return. When we are disappointed, then we can easily become hurt or upset. For example, someone fixes me a vegetarian hamburger and my expectation is that it will taste like a beef burger and when it does not, I am disappointed and do not want it anymore.
I was talking with a friend tonight as I was up with pain about expectations and how we can have expectations of those around us and when they do not perform to our expectations, we can become very disappointed, upset and disillusioned. And yet, what we do not realize is that it is our expectations and not theirs. We have to accept people where they are and not try to mold them into what we want. If we can not live with them how they are, then we need to move on.
I can remember when I was young wanting a man who was strong, protective and loved me as much as I loved him. And I was disappointed on some point every time. It took me years to realize that I had to accept people where they were and not try to make them be the illusion I had in my head.
The same thing is true about life. If we expect life to be this fairy tale, storybook video, we are going to be disappointed. No one has the perfect life and there will be ups and downs. But if we have this high and unrealistic expectation that there will never be problems, we will be disappointed every time.
I remember thinking why could so and so not love me the way I loved them. And that was an expectation I was placing on the other person. And I learned that even though they did not do all the things I thought were romantic or supportive, they did do other things that were loving and supportive. And I learned to see that I was trying to mold them to be like what I wanted but that they loved the only way they knew how. To them, love was providing for us and not all the romantic things that the movies lead us to believe is the perfect romance. And so I learned to change my expectation so that I found myself happier.
They say if you want to love someone like they want to be loved, watch them and see how they love others. For we love others the way we want to be loved. Some people are very sentimental and give cards and flowers and do all those things and other people are not but show their love in other ways. So, learning to watch and see how someone loves others helps us to show them the kind of love they want and helps us to see that they are showing us love, just not our expectation of love.
Everything in life, we tend to have expectations on…food, jobs, people, homes, children, friends…and sometimes we have to re-evaluate our expectations and make sure that they are possible and even realistic. It is good to have expectations but when things do not go as planned, we have to ask ourselves are we disappointed because of the expectation we placed on this or that.
My health is something I have expectations on and as I grew with being disabled and chronically ill, I realized that if I set myself up to this expectation that all of life will be nothing but “being chronically ill”, then I was setting myself up for failure and pain. Life is how we see it and I choose to see mine as happy and normal for me and so I do not find myself trapped by my expectations.
I may be chronically ill and disabled, but I do not wear those things like a cloak or badge of honor to flash at everyone and expect my whole life to be one of misery. That would be an expectation that could affect my whole outlook on life. It is all in how you view it. Chronic means ongoing it does not mean that every minute of every day is going to be one of misery. There is still joy in life and still talents I have that I can use to entertain myself and fulfill myself.
So, when you face disappointments, ask yourself was your expectation holding you down. You know..that vegetarian burger might actually taste pretty good if I quit expecting it to be a beef burger. Being chronically ill might not be as bad as expected if I change my expectations and start looking at the good still in my life. And above all, my happiness is up to me and I will be as happy as I expect I will.
Took this today. If you look there are several faces and profiles but the biggest thing in this picture is the eye looking down…about halfway down the middle of the page to the right. I have not altered or photo shopped anything on this pic.
I walked ten steps with my fore arm crutches. First time in months and shaking like a leaf and pain to the moon. But I did it. Whooooo hooooo. Oh yes I did. Now crashed on bed but cheering in my heart. Whooooo hooooo
It is funny. With all I have wrong physically, even laying here in a hospital bed, oxygen on and pain high…that I have people say “boy you are in bad shape”…my first reaction is “I am?”. I think it is because I do not sit and spend all my energy thinking about or whining about “my poor life as a chronically ill/disabled person” like some do and they attract those just like them. I spend my time living my life and getting the joy from it that is still there. I do not sit around thinking about how sick I am. It is all in how you view it and in spite of the above, I view my life as still full and filled with happiness and love.To me, it is still a beautiful world.
video by atyourserviceable
My friend Sherry says all the time “if you do not like the view..change your focus”. She is one that has been a real inspiration…even when she would push me to keep going and yell at me to “fight damn it fight” when I would get tired. And then there are people that I try to push to get past the “feel sorry for me” stage but then one day you realize they are still in that stage because they want to be and you can not help them out of it if they do not want to help themselves. And you realize that they even bring your spirit down.
My sons and those close to me know what a real fighter I am and how I simply refuse to let my health steal my life from me. I also think about how my actions affect those around me. I certainly do not want my son, who is my caretaker, or my other son and grandbaby, to have as their last memories of me to be a person who whines, complains, and just makes everyone miserable around them. The only people who like to be around someone like that are the ones that do it themselves and then they get tired of it because they want the attention too.
I want my sons to remember their mom being a warrior, to remember their mom’s smiles and laughter and to remember the zany moments like king fu granny yesterday. I want them to remember and learn that no matter what life deals you, someone else always has it worse and if you look around you will find plenty to be thankful for. I do not want my children or my precious Sweetpea to remember their mom/Mimi as “poor pitiful chronically ill Mom/Mimi”.
Being disabled/chronically ill is not who I am. I can make it all about who I am and constantly tell people…just in case the hospital bed, power chair, box of meds, forearm crutches, constant pain, etc LOL does not alert them to it. But, I want to have such an inner light shining that people say they never even stopped to think about me being sick because I did not lay around moaning and groaning. I want to be someone that lets their light shine so brightly that I give light to those who feel they are in darkness and it makes them see a small glow and know that they can keep going.
video by gree47
I think one of the biggest thrills to me was when I sent my friend Sherry a picture of me and she said it was a good picture and I told her “yeah, if I could have had it taken without the silver sticks (forearm crutches) on my arms. And do you know what she said? She told me that she never even notices the fore arm crutches, hospital bed or even the power chair when she sees me or talks to me. She just sees me and my “shining spirit” as she called it. How awesome is that to have someone to so see the heart of me that they do not see all the things that are part of my health.
Some days I lay here reading and want to stick a virtual post it or a real one …on people’s heads that says “stop yer dang whining” because they have so much going for them but are fighting so hard to convince the world how bad off they are.And I want to launch into the song ♫♫ get up offa that thing and dance til you feel better♫♫
video by Gian2812
And then I see beautiful people who are friends on Facebook or in real life, who are suffering challenges and seldom make a complaint but are working to keep their light shining just like my friend Sherry and who bring a glow to those around them and I want to set off balloons and streamers and start singing ♫♫ Celebration time..come on! There’s party going on right here” ♫♫ because they just bring that much light to those around them.
video by TropicalParadiseBaby
Life is a journey, not a destination and how we travel is up to us. It is not about reaching a place but about how we climb over all the hurdles in our lives for there will be hurdles. There will be pain and sorrow, disappointments, successes and failures, joys, days that fly by and days that seem 50 hours long, dreams that happen, dreams that do not…but as long as we keep moving forward we are making success. It is all about the climb and how we choose to climb.
video by VideoLyrics0
It would be wonderful if we all had one of these and could connect with our doctors on this level.
image from www.nocturnalsoldier.org
Now that I have stopped laughing, I have to share this story. I just told it to my dear friend back in FL. Son had gone to town. I am on my hospital bed and I hear a noise and then see a shadow on the ceiling of a person coming towards the kitchen.
All I could think was omg..I am alone and there is someone breaking in my house. So, I eased up to the end of the bed, got my crutch and held on to the wall and eased to the door. Mind you I am on one crutch because I want to use my other hand and foot to scare the intruder.
As the person gets closer, I lunge out the door on one crutch..with my right arm extended in a karate chop and my right foot up about a foot off the ground and holler AYEEEEEEEEEEEEEEEE YAAAAAAAAAAAA at the person. It was my son and he jumped and said “what the hell are you doing????” and then reaches to steady me as I am swaying on the crutch.
I said I thought you were a burglar. He started laughing and said “and you wonder why I don’t get you a gun”…ROFLMAO…I had to call my friend and tell her because she has been here, she knows me and has seen me and she could truly visualize how funny it was…this wobbly granny going to attack an intruder.
He asked me what I would have done had it been an intruder..I said well they would have either thought they had broken into a crazy woman’s house or fallen down on the floor laughing hysterically and then I could have hit them with my crutch. giggling
We have all felt it…that moment when it feels like the absolute core of us was shattered into tiny pieces of glass and we wonder how will we ever put ourselves back together again. Sometimes it is whole lives that are broken from tragedies, hurts, health, accidents and sometimes it is our dreams that are shattered. And it is there that the work and the choosing to pick up the pieces and start rebuilding again starts…piece by piece.
Our lives can be wonderful like a beautiful glass picture and in a moment, the glass shatters into pieces. Can it ever be the same? Sorry to tell you but no, it can not be the same but it can be beautiful again if we start putting the pieces back together. It may become like the stained glass windows we see on buildings that make us look in awe. Just remember though that stained glass only glows and shines when there is light on the inside to shine through. So, we have to have the inner glow, the inner healing and inner strength to build our lives back again. Otherwise, you just have a dim piece of stained glass.
image from shadowtext.net
I love seeing people take their pain, their grief, their hurts, their sorrows, their losses and use them to rebuild their lives and shine upon those around them. Many try but not all succeed because if you have not motivated yourself to shine in spite of all the things you have and are enduring, then you will never motivate any one else except those that are victims too and then you will be motivating them to be victims.
image from www.tumblr.com
Heroes to me are the ones that take all that pain and sorrow, hurt and loss and give forward like the parents of Landon Korabek in Florida, who have taken the loss of their son and turned it into a celebration of his life and using his life to try to save other children’s lives. Every year they have the Jamfest One Love to raise money to spread awareness of what prescription drugs can do to children. What an inspirational set of parents and family. You can read about it here on my friend Sherry’s blog:
We have to pick up the pieces one by one and put them back in place and begin gluing our lives back together. That is the beginning. But, if we do not put our insides back together..our hearts and our minds ….so that we create the glow inside that will illuminate that piece of stained glass that all those broken pieces become, then we will not shine…we will not inspire…we will only be hollow words and actions coming from a faded looking piece of stained glass.
If we have not learned that happiness lies within us, then we will never be happy. We will always be searching for that pot of gold (happiness) at the end of the rainbow when all along it was within us and within our reach. Truly happy people are still happy after the loss, the pain, the sorrow, the trials because their happiness is within and not something someone can take. People can only take our joy if we let them.
“The happiest people do not have the best of everything. They just make the best of everything”
Believe it or not, we are happiest when we are doing, when we are helping others, when we are serving in some capacity in life. That gives us that sense of accomplishment that helps define who we are and helps us put our lives back together each time some tragedy, loss, pain, health issue hits us. But, we can not do that….we can not motivate or inspire anyone until we can heal ourselves first and inspire and motivate ourselves to be positive and to keep fighting and to reach out and help others.
image from www.quotesforthemind.com
Son had the leash laying on the ground hooked to Daisy. He was loading stuff to take with him so Daisy just picked up the end of the leash and escorted herself to the door. She cracks me up.
- Comfort foods
- Dreams for the future
- Eating Out
- Etta James
- Female Impersonators
- heart center
- helping others
- Native American
- New Year's Resolution
- Protection from fraud
- Rocky Mountains
- US Military