I thought I would write a little about chronic illness management, because it has come up this week and it seems to be such a tough subject for people to understand. I did not skate on Thursday because I was sick. I was not so desperately sick that I couldn’t have done it if I really wanted to, but its an issue of pacing and management and where skating sits on the priority of my life.
So, you may have heard of “Spoon Theory.” If you haven’t, it may help to go read this.
So, yeah. Only I think it is more complicated than even she makes it because for me, I don’t know how many spoons I will get a day. It could be anywhere for 5 to 50. Also,when I refer to chronic illness, I am referring to my kidney disease However, my dual sensory loss also plays a role in spoon management. The same task may vary greatly in amount of spoons it takes based on how well my vision and hearing is accommodated. Say I go to a social event. It is an event with a bunch of blind people so all my blindness needs are met, and since they are disability savvy, they are better than average but not perfect about my hearing. That event will take much less spoons than an event that is not disability aware, just everyday people. In this event, NO ONE is going to tell me who they are, where the food is, what is going on, they will point and say things like “over there, ” I will have to go to them because most will be too afraid to talk to me, and when I do, I will have to answer a bunch of monotonous questions about disability and go into “education” mode even though I would much rather talk about other things. This event will take maybe triple or quadruple the spoons of the disability aware event. The other thing that is more complex is that I don’t necessarily start with a fresh supply of spoons every morning. If I used too many spoons yesterday, I may have less today. If I decide to use too many today, I may be borrowing them from tomorrow. Its complicated.
Here are some of the things I do to try to make sure spoon management is more of a physical thing to deal with than an emotional stressor:
- I put things into categories. I’m lucky that I rarely have too many days where I can do absolutely nothing. So, I can arrange to do things from a less demanding category or a more demanding one based on my level of energy. For example, most desk work, I can do unless I feel so shitty I can’t concentrate. So, there is always something I can usually do to make myself more productive at home.
- I don’t think of sick days as days where I am just waiting it out getting better. I know that there will be a time when there is no more “waiting it out.” This is it. I don’t waste days being sick. So, I have a running list of tasks in all different spoon categories. There are always low spoon tasks. And even if I can’t do a whole day of low spoon tasks, I could do one…or two, or three. At the very least, I can hug my kid or my dog or my husband and try to be a good family member for a few minutes. Then I have not wasted a day.
- I have back up plans and more back up plans. Life for myself, nor my kids or others should not stop if I’m sick. It may be rearranged, but there should be no wait around to get better type of things.
- This is important when making commitments which is almost impossible to do when you have a chronic illness. Its scary. So, I give people advance warning and I tell them what my back up plans are. For example, every term I have to volunteer for 4 hours for my kid’s school to get a tuition break. I tell them upfront about my situation. I pick three things on three different days to do. I prepare substitutes for myself. And then I will be able to get one of those days done without too much letting people down. In college, I would talk to professors at the beginning of the term and say I may be here for ever class or I may miss too many classes. Lets negotiate what I can do if I miss too many. How many is too many? What alternative assignments or learning can I do to make up for missed days? It worked so much better to do that upfront.
- If I do commit to something that absolutely cannot be changed. There is about an 85% chance that I can push through it no matter what. But then I make sure that there is recovery time both before and afterwards. I would schedule easy days around it.
- I don’t listen to any kind of talk about my being “not sick enough” or “too lazy” or any of that shit. I and only I decide what I am well enough to do. No one else can judge me. I see what other people call “sick” and its bullshit. People who are well all year and then get a cold and take off a week and whine about it. The same holds true if they say “You are too sick to participate.” Chronic Kidney Disease is not contagious. Only I decide if I’m too sick to participate in something. I know I’ve done way more sick than they’ve ever done, so its just impossible for others to judge you appropriately. I try to do my part to lessen any impact on others if I can’t do something, but that is where my responsibility ends.
- I also have a responsibility to take care of my health and try to work at as full capacity as possible whether that means going to the doctor, eating the right foods or understanding how to use Braille with a computer or finding a communication method that works. But I also understand that these things are ever changing, my body is ever changing, science is ever changing, and there is no way to always know the best way to take care of and manage my disabilities at all times. I do my best to keep up with it all, I’m not perfect, and I’m not going to feel bad about not being perfect.
- I understand and appreciate the concept of partial participation. With skating, I know that I cannot skate every day, do every class, competition, test, etc. I appreciate what I can do and don’t have an all or nothing attitude about anything. I try my best and measure myself against that and not what others can do. Doing a part of something is better than doing nothing at all.
- I prioritize based on my own priorities as much as possible, not others. Its not always possible. There are some bullshit things you have to do in life, like paying my water bill every two months by hand because the stupid water company won’t let me set up auto billing. Its stupid, but no water in the house is a very bad thing, so I do it, (fortunately its on my easy list.) But many, many other things do not have to be done, nor done by ME. This sometimes means my house is messy or the kids are eating McDonalds food. But my priority is that my kids get fed, healthcared, educated, and feel included and loved at home. How I do that is sometimes fantastic and sometimes (McDonalds) just getting by.
- I am extremely lucky to have been able to set up a very flexible schedule for myself where we still earn enough money for the necessities of life (largely thanks to my husband, who is a workhorse and entirely supportive of me.) I know that this is difficult and not everyone can do this. But more and more work is getting more flexible and things like telecommuting, gig economy, work-life balance programs can help with this. As much as humanly possible, I’ve tried to build a life where my disabilities and illness are not obstacles but can be used as strengths. I am lucky to have several outlets where I can help my husband earn money, help other people, be creative and have a meaningful life even with disability and sickness. There are sacrifices to this. I could have had a more prestigious career, made more money, etc. But really? Perhaps not if I was always failing because I was sick all the time or unaccommodated and killing myself to make it in a full-time working world.
- I know that life is precious, at any time an instant could change your whole life, and there is only so much in my control. I try to make the best of what I have control over and forget the rest. I have a good inner core about who I am and what I can do. I don’t get concerned with who I am not or what I can’t do. I try to just expand upon what I can do and who I am. We are all in a decline, I know that there will be day I can no longer skate or remember who I am or fill-in-the-blank here. I can’t be scared about that. I can take advantage of what I can do today.
- Whining is extremely irritating to me. I try not to do it (much.)
None of this ever works perfectly nor do I always have the perfect attitude about it. But it tends to balance out in the end. I come back to this core. I was disappointed to have missed Thursday skating, I would have rather gone and done my group lesson (Its been three weeks!) But I did some other things and that day is done. I can’t get hung up on it. And I plan to go back Monday and so I am still a skater.
I’ve often said, oh-big deal about being Deafblind, but CKD is kicking me in the ass and making me feel like I can’t be who I want to be. It has been what feels like an “impairment” vs. the other stuff which just felt like an identity that has brought me more good than bad. I’ve often wondered why I can’t seem to look at CKD in the same light as my sensory disabilities. And…I finally think I’m starting to a bit more. This is who I am. I can do this today. I can’t do this today, maybe tomorrow. I’m not going to feel bad about it or apologize to anyone for it. I’m doing as much as I can and that’s enough. That’s me.