Life is always challenging and sometimes it is extremely challenging but the truth is that what we do with life is up to us. Yes, I need caregivers but I still have control of my attitude and my emotions and so I have to be responsible for my own happiness. And I have to let those I love know my limitations. This does not mean an hour plus of telling all my woes. It just means simply telling those we want to get to see that I can not stay long, sit long, need to be able to lay down if I need it whether I am at my own home or at theirs, etc.
image from whatwillmatter.com
I think probably the hardest thing for someone chronically ill is that of learning to entertain ourselves. No one wants to be alone all the time but there will be times we are alone and can not depend on someone to come running to entertain us. I have heard others go on and on about how no one is there to talk to or no one comes to visit. The reality was that people were not there every minute of every day and so the person did not know how to entertain themselves at all.
I am alone for different periods of time during each day, but I am not lonely as I get on the internet and talk to others, I read, I write, I draw and I do other things to keep myself occupied. I know how to entertain myself. Being sick as I am for as long as I have been, I did not want to turn into what I see happening to many chronically ill people. I did not want to turn into one of those needy, clingy and demanding people. Being chronically ill, it is easy for us to become self-absorbed and turn every thing into all about us and I did not want that. I wanted to enjoy what I could out of life and to find ways to still be involved in life as much as possible.
Son and I learned to be very creative in finding ways to keep me involved with friends and loved ones. Years ago when I started getting where I needed to lay down a lot, we decided that the best thing was to put a bed or day bed in the living room so that I could lay out there and enjoy company. At first I was self-conscious and then I soon noticed that those that visited who are really close to me would come and sit or lounge on the bed with me as we all talked or watched a movie and so I did not feel left out and was not stuck back in my bedroom. And if I am feeling too poorly to transfer to the bed in the living room, I will tell people they must come into my bedroom to visit.
I have always wondered why every house built was not built with a handicap entrance and handicap bathrooms considering we have so many chronically ill people in the country. That would make it easier for those like me to go for short visits to other people’s houses. Here, the people I am close with live an hour away and I can not visit them but before we lived here, I had friends that would fix me on the couch with pillows and covers at their house so I could lay there and visit with them and that meant a lot. All it took was just a little creativity. Sometimes all I did was lay there and watch everyone else talking and I enjoyed just doing that.
I learned that talking on a phone was too much for my sensitive ears so I use the speaker phone which makes it where I can lay here and talk. I use small speakers by my bed or by the bed in the living room so that the noise of watching a movie is not too much. I never wear two ear buds as it locks the noise inside my head with no place to go. I wear one so that the sound waves do not cause too much stress on my body.
I have a shower chair with arms as I have trouble sitting up long and it makes showering so much nicer and less draining of my energy. I also have a roll-in shower so that I can roll into the shower sitting in my special shower chair and roll back to the bed in my robe and dress right there on my bed and it saves me energy. There are all sorts of ways to be creative and find steps to lessen the strain and the loss of energy and allow you to do more. I actually comb/brush my hair sitting here on the edge of the bed looking into my computer cam as a mirror.
I find many chronically ill people will not use what is necessary to help them with their daily living because they do not want to be seen using handicap tools. It is that denial stage of being sick and it really makes life harder for us. When I suggest using the handicap carts at a store, they will quickly say they do not need it but then the next time they go to the store all they talk about is how exhausted they are and how they had to cut their shopping short because of the pain and exhaustion. Pride can make life harder.
Talk about creativity. I remember before I got my power chair using a rolling laundry cart with a liner in it to put my groceries in to push them into the house. I even pushed my grand baby in it from the van to the house when she stayed with me. She stood in it holding on to the sides and away we went. So that I could enjoy having her at the house, I blocked off areas so that she played right up near my recliner and I had a place close by for her toys. She often spent many hours playing with her toys and coloring with her book on the pillow I put in my lap to hold her things…all creative ways to enjoy my grand baby even though I was chronically ill and disabled. I even helped her ride her little bicycle by riding beside her in my power chair and holding the back of the seat as she rode.
When my Wonder Dog was alive, and I was in the other house and my room was down this long hallway and I had no power chair, I would walk to the kitchen on my forearm crutches. I had two of those cloth grocery bags tied together that I draped over Jack’s back. In one bag I put my thermos cup of coffee and in the other side I put my little bowl of dry cereal and my plastic jar of milk for the cereal and a spoon. Jack walked beside me carrying my food back to my room: creative ways of doing life.
When I was so sick after having part of my kidney removed , my son took a rolling cooler and put ice in it and loaded it with drinks, my breakfast and lunch, snacks and anything he thought I might need and sat it right beside my recliner so that I had all I needed without me having to try to go fix it: creative ways to make life easier.
There are many ways to adapt if we just take a little time when we are feeling alright to make a list of things that would make it easier for us and how we could adapt things to handle the situations. These are just a few things but they are things that help me with my daily life and make it much better than it would be if I did not make these adaptations. Sometimes we can become so overwhelmed by the sickness or the disability that we lose our own survival skills and find ourselves floundering. When we feel that way and feel like we can not figure any way to make things better, then asking someone close to you to help you brain storm some ideas is a good idea. Life can be tough but we can make it easier with just a little creativity.
Work The Dream 