Health Update / Learn Something!

Staying Motivated While Chronically Ill

It took me a week to realize the blame for the recent exasperation of autoimmune symptoms (fever, sore throat, tender lymph nodes, fatigue) belongs on my autoimmune disease deciding to flare up. Ohh! That is why none of my usual tricks have been working. I had begun wondering if I had angered some sort of especially vengeful chronic illness god. Google turns up nothing on getting in the good graces of an angered chronic illness deity, so I hope IVIG is approved by my insurance, and soon. Although I am still able to meet my basic needs, this flare up is no fun.

Normally, structuring my day in order to maximize activity and minimize symptoms as much as possible requires thought, but is not excessively stressful. However, on days where I am EXTRA sick and my body is not as predictable (I call this phenomenon: “my body changing the rules”), it is mentally exhausting evaluating whether I feel sick and need to rest, or feel sick but could get to work on my goals for the day. When you are sick everyday, it can be hard to identify when you are so sick that you should just stay in bed.

I need a day off from identifying if I am striking the right balance of rest and activity. I talked about my recent efforts to use an activity monitor to improve my planning in my last post. In the past week and a half, I have been as limited in activity as I normally am after a “big” day, although pacing fairly well with the energy I do have.

august activity

(numbers across bottom are days)

What does structuring my day involve? I break up most tasks into small chunks. This allows me to do tasks which otherwise may not be possible. If I feel a bit better right now than I did last hour, I need to decide if I should seize the opportunity and work on tasks I want done, or if I should rest a bit more in order to maximize my energy exertion potential. Should I do my biggest task, or should I do a smaller task so I don’t crash as much? I need to identify which goal I should work on. I tend to set and categorize goals by priority in addition to what is required of my body. For example, sitting down with movement (chopping veggies), sitting down without movement (phone calls), standing, low on thought/high on movement (cleaning), low on movement/high on thought (conversations), and so on.

Like anyone, I typically have an idea of what tasks need done in a given week or month. What I used to consider vitally necessary, such as keeping my house extremely organized, have had to be dropped. I try and stick to what is necessary then do the “extras” if I have energy and an empty to-do list. Some tasks are repeating (food prep, wash hair) while others are not (attend Emma’s graduation, synthesize articles on a topic, write thank you cards). Some are exciting, others are not. If there is a choice, how my health looks on any given day or week will determine which ones get my energy.

I certainly do not achieve all of the goals I set, despite having the ability. By the ability, I mean how much I can do without collapsing. There is little I can do without feeling more sick afterwards than when I began. However, I have a particular view on getting things done I try to follow. Out of self-discipline, I work on my goals for the day whether I feel like it or not. Despite being capable, I notice people (ill or not) sometimes wait around too long for motivation to strike in order to get going on a task. I think working on a task based solely on the fact I want it done is important. Often, motivation to continue the task comes once I start. If it doesn’t? Well, at least it is done! The results of self-discipline often create that motivation I was waiting around on. If nothing else, I will be motivated to continue practicing discipline. Motivation and inspiration are wonderful, but I think discipline and schedule are what get goals achieved.

I will probably never be “in the mood” to scrub my bathtub, and I cannot remember the last time I could do it without being physically uncomfortable. However, once I start doing it, I become absorbed in the task. Once it is done, I am elated to have a clean tub. Another example is washing my hair, which makes my dysautonomia angry. I do not look forward to it and usually want to stop mid hair wash. I am sure my family is appreciative I wash my hair despite not feeling “inspired” to do it. Although, I am sure they would not have objected to a bit less self-discipline when I went through the phase of washing my hair with vinegar or clay. My Mom asked me to tell the Etsy seller who makes my natural shampoo and conditioner thank you. ๐Ÿ™‚ (I know somebody is going to say it: “If it smells like vinegar, you are using too much.” My hair grabs smells, even the tiniest bit of diluted vinegar. I do not know what to tell you.)

So, after all this talk of how great I think self-discipline is to get tasks achieved, I am coming back to the fact I can tell my body needs a day of no tasks required beyond health management stuff like fluids and medication. Despite my fevers, I thought I would feel better overall if I was (my ill version of) productive.

“Yeeahh… About that.”

i don't know about this

I set a goal for tomorrow… to not set any goals for tomorrow. If I am inspired and feel up to it, I am welcome to go crazy working my little heart out. Otherwise, no matter how tiny and seemingly inconsequential, my only task is to set NO GOALS. My brain needs a day off from managing/caring about my activity level.

Edit: Today is the tomorrow I wrote about in this post. Check out the card I got in the mail today from Grandma Mabel.   

  Talk about perfect timing!

9 thoughts on “Staying Motivated While Chronically Ill

  1. No goals! A day of freedom!! You have earned it. ๐Ÿ™‚

    But honestly, the coping with unpredictability of how we might feel fro minute to minute can be exhausting. Sometimes, you just need a break. You have earned it. ๐Ÿ™‚

    Liked by 1 person

  2. It frustrates me for all of us that have to see normal, everyday things like showering, cooking, etc. as a daily goal versus living a normal life. Such is life and we make the best of it!

    Liked by 1 person

  3. this is a common issue with the chronically ill, at least that is what i believe. learning to be kind to yourself is so important and your grandmother is wisely pointing that out for you. the blessing of all this, again just my opinion, is how we have the opportunity to learn more about ourselves than we would if we were healthy every day.

    i do hope your insurance company gets on the ball and approves your ivig.

    Liked by 1 person

  4. Thank you for sharing and raising awareness of what living with POTS really feels like!! You are so determined, brave, and strong! I also have POTS. If anyone is interested, below is a link to 9 videos documenting my journey of trying to recover from POTS. I feel so fortunate that I’ve found an innovative treatment path through the field of Functional Neurology where a full recovery is no longer an unrealistic possibility, but it has become the expectation. It is my hope that by sharing my story it will help others going through similar situations find hope and if at all possible, the recovery they so deserve. The Tales of Mrs. POTS https://www.youtube.com/playlist?list=PLo6fRICRRY2T2jXDULyZmKFaG98pOsDcs

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  5. Wow, you are mastering a technique that is so hard to learn! The self awareness of what your body needs or can handle at the moment and in the future, and the emotional strength to tell yourself it’s ok if today is not a strong day are huge tools to have. But I don’t blame you from wanting to take a break from all that planning and thinking and body scanning.

    I think another hard thing to learn is changing our perspective regarding a “completed” task. We don’t ever take out the vacuum and only vacuum half a room because we have been taught that that is a half ass job. But with chronic illness, we have to change the way we think about tasks, and sometimes, we have to just clean half the bathtub or wash half the dishes. Can you just wash half your hair? ๐Ÿ™‚

    Liked by 1 person

  6. Perfect post. I haven’t read through your whole blog to see what your illness is, but this sounds exactly like what I do. Each day is different & seemingly nobody understands. I’m under 40, and they don’t see why I’m not working a job & don’t get out much. It is very frustrating, but I’m still here, so manipulating (tricking) my brain/body/time into getting SOME motivation & energy, is being accomplished. At a turtle’s speed.

    Thank you for this… ๐Ÿ˜‰
    Good luck, each day! ๐Ÿ˜˜

    rrb

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