I remember being healthy and I remember being active in life. I enjoyed singing on the praise team, running my own virtual assistant business and nights out with my husband. My life was full, happy and I felt like I was finally happy in life. I can say now that I took my ability to be active completely for granted. Now, as I sit here getting ready to pack for a weekend trip, I realize what healthy people don’t understand about Chronic Illness.
How do I know what healthy people don’t understand? Because I was once one of them.
I can’t do anything spontaneously Everything has to have a plan and that plan has to have a back up plan. Sometimes, even the back up plan needs a back up plan. Why is this amount of planning necessary? Because it is the only way to feel even slight control over something that isn’t controllable. Discussing these contingency plans with my husband makes me feel comfortable to go out because I know that we are on the same page. That might seem a little confusing since #1 was all about making plans. But nothing on your calendar is set in stone. It is impossible to make concrete plans because you don’t really know what that day will bring. If invited to dinner, I always have to give a disclaimer that it all depends on my health that day. For more information read, One Day I Won’t Cancel. I don’t have the energy to do things I have to manage my activities to make the most out of the energy that I do have. For example, if I bath in the morning when I need to leave the house, I will not be physically able to do the activity planned. The act of bathing, getting ready at the same time is enough to require a long nap. If I know that I am going somewhere tomorrow, then I know that I have to shower the night before. Read When You Need a Nap After a Bath. I have to stay away from things that make my illness worse I can’t eat chocolate, uncured meat, watch fireworks, be around strong smells, look at Christmas lights or ride in a car at night without my sunglasses on. You may feel like it is extreme but this is what I have to do to be able to do things that are somewhat normal. Does this mean that sometimes I miss out on some things? Yes, it does but I am doing the best that I can do. I am not lazy or antisocial I stay at home because I don’t have a choice and I have not been able to drive in over 2 years. While I do spend a lot of time resting it is because my body requires me to do that. It would be amazing to be more social but it isn’t as easy as getting ready and going somewhere. I have to consider items 1-4 of this list as well as how I am feeling that day.
I miss the days of making plans for the week and knowing that nothing would really change in the plan. Having a life with limited health and energy isn’t fun. I do notice that when I try to explain what my illness is like and what it means for my life, that people look at me like I have 3 heads. Then there are always the occasional comment that drives home the fact that they just don’t get it. There are just some things about chronic illness that healthy people don’t understand.
So, I am packing for this weekend trip not knowing if I will actually be able to participate in the event we are going to. I have all of the plans and the contingency plans made and I hope I get to enjoy the weekend with my husband without any health issues.
To learn more about my chronic illness, Hemiplegic Migraine, read Chronic Hemiplegic Migraine Defined.