Everybody has something to deal with, whether it’s chronic pain, illness, injury, stress, or trauma. I have some limitations in my life due to chronic illness. I won’t bore you with all the details of how chronic illness is defined or what it means. I won’t explain the names of the illnesses with which I live. Everybody has their own problems, ailments, and other struggles that they live with. Mine are certainly better than some and, for that, I’m grateful.
Having said that, I feel that it’s also beneficial to raise awareness for the struggles that people live with, whether the limitations are physical, mental, or emotional. I feel like they’re all intertwined anyway. For sure, when I feel physically depleted, I also feel angry or depressed or sad (or all 3). Sometimes my thinking is adversely affected and I don’t trust myself to make important decisions or even drive. My anxiety ramps up even more than usual. Conversely, if I’m feeling down or thinking less clearly, it also seems to magnify the physical aspect of my conditions. Being affected like this means that I’m incapable of functioning at my best.
It’s not always like that, of course. I have great days when I can do everything (and sometimes more) than I planned on doing. I’m so grateful for those days. I have bad days when I’m unable to do more than open and close my eyes and pray for sleep. I hang on through those days knowing that it will pass. What I’d like to talk about is our norm.
My own “normal” life has changed to accommodate my slower pace, my physical and mental limitations, the flexibility required to live my life now, and the perspective necessary to get through each day. Again, everybody living with some type of limitation is living within a vast range of capabilities and disabilities. I can only speak for myself but know that much of this resonates as common amongst us.
One of the biggest struggles that we live with is trying to ensure that those closest to us understand what we’re going through. We want them to know that we aren’t uncaring when we’re forgetful and we don’t mean to be cranky and angry when we’re actually frustrated and upset with ourselves! If I ask you the same thing 3 times, please understand it’s not because I wasn’t listening. I sometimes have a hard time concentrating or remembering. We are happy to talk about any of this with you, but also don’t want to burden you. If you have questions, please ask us so that we can explain.
We want our family and friends to understand that we would do everything we can to keep our plans and spend time together but sometimes we just can’t do it. It doesn’t mean that we care less or that, whatever it is, is unimportant to us. We feel horribly guilty when we have to change or cancel something that we committed to. We hate to have to talk about these things and we tend to keep our troubles private, but we also struggle for understanding. We want those closest to us to know how we’re affected, understand how it affects them, too, and how we can best work together to get through these times.
Every morning, I stick to as much of a routine as possible. It helps me feel confident and requires less thinking. When I need to vary from that, I require additional time. I need to accommodate that. While I’m going about my usual morning routine, I evaluate how I’m feeling and determine what I’m able to accomplish that day, or at least what I THINK I can do that day. It may change in an hour. I go over what I had planned for the day and look at my to-do list (because I have to write everything down if I even hope to get it accomplished). On good days, I may be very successful and get everything done I had hoped for. On bad days, I may end up ignoring the entire thing and going back to bed. Then I’ll feel guilty because I “wasted” my day. This, in turn, leads to me feeling sad, angry, exasperated, and not even close to feeling better after spending hours in bed. On top of that, the list of uncompleted tasks gets even longer for the following days. I feel compelled to do even more the next day and the cycle continues. Add to that the inability to sleep and, whatever sleep I do manage to get is fitful and inadequate. It makes for an interesting day. I think we’ve all been there!
I feel like the pressure that we put on ourselves far exceeds that of other people’s expectations of us. I know that I feel like I have to “keep up”, do my share, prove that I’m worthwhile and can do what I need to do. I don’t want to feel like a failure. We shouldn’t feel this way! If I was talking to somebody else, I’d feel far more compassion for them than I give to myself. It’s like we put this extra burden on ourselves and make things so much harder than we have to. I’ve tried and tried to overcome this way of thinking, but I’ve been unsuccessful so far. Every single day, I get up and attempt to do as much as possible rather than taking the time to evaluate what’s actually BEST for me to do that day and just do that. I’m continuing to learn different ways to address this and I keep trying to at least THINK about it every day rather than just rushing headlong into bad decisions.
It’s a hard thing to do when I really WANT to run to the store, visit my kids, play with my grandson, and spend time with friends. Of course, that’s all balanced with paying bills, cleaning the house, cooking, doing laundry, going to the doctor, and dealing with insurance. Trying to fit in self-care seems to be too much, even though I know it should be a priority. We have limited amounts of energy and physical tolerance levels. That’s the crux of the problem: balance. Living a life without limitations is hard enough to balance. Living a life with additional problems is like walking a tightrope. Make one small error in judgment and you could pay for it for days or weeks. Dwell on it too long and you’ll feel even worse. Feel good this morning? Enjoy it because it might change by noon. How do we manage this?
We manage our lives the best way that we’re able to! It’s as simple as that. We each do things differently. There’s absolutely no right and wrong. Everyone has different circumstances, different expectations, and different temperaments. It’s unfair to judge anybody against another, whether we’re struggling or not. That’s the thing. We don’t want to be lumped into a label of “disabled” or “ill” or “sick” or any other title that’s being used. We’re human beings struggling with our limitations just like every other human being on earth. Ours are just sometimes a bit more obvious than other people’s struggles.
I’m extremely fortunate that I have family and friends that do support me without explanation. I know that it can be as frustrating for them as it is for me, but I don’t feel like I have to justify how or why I do things anymore. I’m becoming more comfortable in my own circumstances and learning how to be more accepting of myself as I am now. It’s a journey, but one that I need to embark on again every single day when I wake up.
I know that I’m lucky and that lots of people aren’t as fortunate. They feel as if they have to prove their disability or prove their worth. Neither one is a good thing. It puts additional stress on an already stressful life. We need to realize that we’re all just doing the best that we can, each in our own lives and in our own circumstances. My hope is that we can understand each other, without judgment, knowing that we all have issues that we’re dealing with. This means being more accepting and understanding of ourselves as well. Sometimes I think that’s the hardest job of all!
Be Well ♥