Rhythm is instilled in us. It allows us to have an understanding of what works for us to survive within this life we live. It is a way to feel immortal in our very mortal bodies. In a rhythm we are able to figure out a way that allows us to move in and out of our days within life, allowing for us to be able to set up what we know can and can’t be done with our chronic illness. It makes us feel a little bit more human for a moment to feel that there is some kind of continuous normality of grounding ourselves, yet we feel invincible when we have a rhythm that works. Those rhythms change and can look different within our day to day normal lives, but there is a heartbeat of life that keeps us feeling like we have a sense of control and a sense of understanding what is happening from step to step. It is our new normal, it is a rhythm we are constantly shifting and changing to make it more normal feeling. It may be a work in progress, but it is ours.
Each personal rhythm is created by how we walk through life in little moments. When do we get up, when we shower, how we shower, how do we move within environments, how we interact with weather or temperatures, what we eat, how we eat, how we choose to interact with others, and so many other movements. Your rhythm is essentially the safety zone of your routine. With chronic illness, these little movements and moments become under a magnifying glass, because we are taught in those moments are limits in such great detail. Our rhythms are created through our illness based on what can and can’t be done. As we walk with chronic illness we understand the very delicate balance it requires to maintain any rhythm, and the extremely hard work it is to find and carry that rhythm.
We come in contact with someone else’s rhythm, little adjustments are made and sometimes in extreme cases, our rhythm collides to completely unravel itself. As humans, there will always be other humans around us and sharing bits of their rhythm with us in each moment of connection or near connection we have with them and visa versa. Within the season of holidays our personal universe seems to intertwine with a lot of others, making our rhythm adjust in ways we aren’t expecting and frankly our rhythm can be adjusted before we even realize it. There are some people who are absolutely more in tune with intentionally seeking out a rhythm that is good for them while others are completely unaware of their universe they have created for themselves, but when someone has chronic illness it is an every moment understanding of how to move from one position to the next. It is about creating a rhythm that is built from a completely different shattered rhythm.
We hold that rhythm a little closer than most because it took a while for us to accomplish it and it is very much a work of art that is still in progress. When we come into moments where we know our rhythm has been bumped into, with either little or major shift from someone else’s rhythm, it is an adjustment and potentially a little difficult to readjust. It is difficult because we would love for our rhythm to be elastic, and these moments require us to realize how manipulated they can be, along with how much work it will take. When having people over for the holidays or going to others homes, it can be a change. It can be so exciting to be with others in the holidays, but there are so many effects it can have on our rhythm. Below are ideas to maintain the rhythm you worked really hard for, to respect others, and enjoy the exciting moments to come!
When Having Guest Over
Finding a rhythm for yourself to best enjoy the holidays and those you love.
– Know your limits and what you are willing and not willing to do.
– For those that add unnecessary stress to your life, figure out how to make conversation light or surface level to avoid aspects of the conversation that could hinder your health.
– Find a place in the environment where you can step away for a moment or two when you find yourself having symptoms or maybe just give yourself some time as a gift.
– Know you only have to share what you want to share.
– Even if the guest has been to your home frequently, they won’t ever fully know what it is to live with you. You don’t have to tell them everything, but coming up with a way to say that you just need your space or that you are ok, will help you in a lot of situations.
– Before guests come make sure that if there is anything you don’t want them to know about, it is tucked away. If you have medications, or specific items that you feel shouldn’t be out, just tuck them away in a spot where you know you personally can access them easily, but your guest can’t.
– Understand that they have a routine as well, so being away from their home is an adjustment to them in a different way potentially.
Consider the different situations with your caregivers and/or those you live with.
– Talk to your caregiver/those you live with about the potential schedule when guest come.
– Help them understand your limits, by letting them know what parts you feel that you would be up to doing.
– Ask them what they would be willing to still help you with during the visit.
– Figure out some private way that you could get their attention so they know you are having symptoms and stepping away.
– Ask them what their expectations of you may be or the role you may play during the visit.
– Consider having a conversation about what is ok to talk about with your health and what isn’t ok to talk about.
When going to someone else’s home.
Figuring out what works best for you.
– You don’t have to tell them everything about your life or your health, but give them a typical routine or what you feel you could do. This way they can figure out their schedule.
– Give them a list of food allergies. If you feel more comfortable you could potentially bring your own food.
– If you require a certain kind of bed or shower ask them about what they have that help you. Or if you can’t go up the stairs, let them know.
– Consider anything that you can provide for yourself, or bring. Knowing that it is not our home and we have very specific requirements, figure out if you can problem solve on your own. If you can’t then tell your host what you may need from them.
– If you bring a large quantity of things, make sure your host knows. This way they can adjust their home to fit certain sized items.
– Make sure you give them a reasonable amount of time to know all the above. This way it gives them enough time to adjust if need be.
– Don’t expect your host to pay for anything extra to accommodate you. Figure out the best way to either pay them if they purchase things, or bring as much as you can of your personal required items.
Creating a balance for your caregiver/those you are traveling with.
– When traveling with someone make sure they know what you need their help with.
– Give your caregiver/person you are traveling with a list of your medications and main doctor names just in case something happens.
– You want them to enjoy the trip as much as possible, so don’t expect too much from them, rather enjoy the moments with them.
Would you rather someone come to you or you go to someone else’s home for visits?
T r u l y , L i n d y