The Other Side Of The Wall
This blog is for all my friends and loved ones that suffer with chronic illness, chronic pain and disabilities that make getting outside of the house very hard and for anyone that is more housebound than not. I have so many that ask me about what to do with people who push and push them to get out and they just can not or feel almost panicky at the thought of going out into the world.
image from eil.com
Now, I titled this The Other Side Of The Wall because those of us that are chronically ill live with this wall between us and healthy lives and sometimes that wall is a prison and sometimes it is our wall of a safe haven because it is our homes where we feel safe and secure and is very familiar to us.
I know that many do not understand why there are so many times that I prefer being in my home, in my one room world and not out in the world. And many other chronically ill people feel that way too. Our homes become our safe havens because in our homes are the things that make us feel less painful and sick. We have our handicap things like for me my hospital bed, my power chair, my roll in shower and handicap toilet and the quietness where I can shut out the loudness of the world for noise triggers my pain and illness. This also includes things such as my windows that are bubble wrapped and covered for darkness because bright lights and dust from outside trigger my pain and illness. For others it is walkers, canes, their couch that they are used to or their recliner, their shower stools, their easy way of fixing the food they are used to and just being in a place where everything is familiar.
A friend recently went on a trip for a family event. It was the only way she could be part of it. But, she had to endure driving, sleeping in a strange bed, being around so many people for crowds often trigger our exhaustion and sickness, eating different foods than she is used to, etc. The trip was worth it to her because she got to be with family but now she will pay a heavy price for this venture out. But, she will be able to rest and recuperate because she is back on the other side of the wall into her home that is her safe haven.
Friends think we just do not want to go out and that is not true. There is nothing we would love more than to go to stores, to have coffee with friends, eat dinner out, to go shopping or just for a ride in the country. I have had people tell me to “just take another pain pill” as if that would solve the problem never realizing that I can not just take another pain pill without affecting my health.
It is so hard for those not chronically ill or disabled to understand that what is our prison is also our safe haven. We hear comments about how they would go crazy if they had to stay home all the time. I wake up in the mornings early and it is my favorite time because it is quiet, I can quietly read on the internet and sip my tea and just enjoy the day beginning. I have all I need here to make my life easier and it is very safe here. That does not mean I never leave here. It means that here is easier on me and my health. I do try to go to my tiny little one room church when I can which in turn means I come home and fall instantly into my bed and sleep dead sleep for hours.
When people are healthy, they can often take for granted what they can do. When a person is healthy they can walk where they want, they can go where they want, drive where they want, eat whatever they want, be at events with lots of people like big football games if they want, and they do not have to worry if there will be handicap entrances, handicap bathrooms, a place to go to get a little quietness to calm their senses from all the noise and activity, a place to lay down if they need to, seats that are comfortable, how to carry oxygen and will it last long enough, and how to avoid sensory overload. That is the other side of the big wall that separates us from the healthy people.
And so, while sometimes it feels like we are stuck in a prison, our homes actually become our sanctuary of safety..of comfort and of convenience. My son often compares me going out of the house to having a baby where you have to plan what all you need to take. My other son when I kept my Sweetpea for the day or over night, would load up their playpen, high chair, stroller, bag with diapers, milk bottles, baby food, toys, car seat, bouncy seat and any medicine she might need. It took planning to make sure all was there to make sure taking care of her was done.
The same thing goes for a chronically ill person. We have to plan all that we need to last for the amount of time we will be out. It depends on what each chronically ill person needs as to what is packed into the vehicle. For me, we must consider how many bottles of oxygen will I need, my special food since I am on a special diet, my bottles of drinks, a change of clothing should I need it, my power chair, pillows so I can lay back in the van, a jacket and my blanket for when I have chills, my medicine bag so that if we are late, my forearm crutches if the bathroom is not handicap and I can not get my power chair into it, and the medicine bag so that I have all my medicines and will not miss a dose if we are late getting home. We can not just go and jump into the vehicle and go.
This is why we often dream of family and friends who come to our house in small numbers and bring dinner and not making us feel left out because we can not get to their house. It is not we do not want to be there it is that we know we can not handle the trip, the crowds, the lack of handicap conveniences we have, etc. And many chronically ill find themselves alone over and over because those healthy do not know how to include them in activities because they are ill. And some friends and family do not include them because it takes too much time and effort for them to include us. So, education is really necessary and creating a list of sorts of things they can do to include us in their lives is a big help.
My other son had me get online to watch my Sweetpea at the state rodeo festivities. I could not go and I wanted so badly to see her ride her horse. But, I got to see because it was on the internet. I cried when they called her name. It was awesome to be part of it. Other times, like the father daughter dance on Valentine’s Day, I get pictures when they are going. It makes me feel part of it. Many people have the tablets or phones that do live video taping and can take videos for those of us chronically ill of special events and we can see it as it happens from our safe place at home. Those healthy can bring the wall down some for those of us chronically ill by doing things like sending text pictures, videos, and letting us see what we are not physically able to go to. Do you know what it means to see your granddaughter ride in real-time from your hospital bed? I do and I can tell you it was one of the highlights of my life.
The wall does not hold the chronically ill in. It is something that does separate us from the healthy because the healthy do not understand what we go through. One day they will be if nothing else, old and lose ability and they too will have a safe haven. And then they will understand why we like being in our safe havens. Until then, we can hope and pray that our loved ones will pick up some of the things we deal with and start doing things to keep us in their lives so that our worlds expand….things like my sons do. I realize I am the rare case and I am so blessed to have sons like I do. I believe we can change the world one day at a time working on solutions not just focusing on the problems.
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