Routine Helps When Living With Chronic Illness

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by Dr. C |

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Many writers offering chronic disease management tips suggest establishing a routine. Doing this while battling a chronic illness is no easy task. It used to be that I could push myself hard to get something done, and all I would feel afterward is tired. Now when I push like that, I am physically, mentally, and emotionally depleted — after every time, 100% of the time. I had to change.

Threshold management, the “T” in my Parkinson’s self-management program TBM, focuses on equanimity, that middle way between doing too much and not doing enough. (The other two components of TBM are brain rewiring and mindful movement.) Routine helps because I can set aside limited blocks of time to dedicate to projects and tasks.

Blocks of daily routine time are built around my two “off” periods at 9 a.m. and in the early evening. Off period time is treated differently than other times of the day. Off periods are miniversions of the “Beast days” I described previously, referring to periods of intense suffering. Fortunately, there is useful lucid time in between and after the off periods. Routine makes use of productive time.

Productive time is used for getting projects done, including this weekly column. Available lucid time is treated like gold, protected within the routine. I drain that precious lucidity resource only as far as my mind and body can negotiate in that moment, without pushing it. I must be willing at any point to say, “I can’t do that today. Maybe tomorrow.”

I must rest so much more than I am accustomed to doing. It is an absolute requirement now. Rest, the off periods, and the lucid times are all part of my daily routine.

One of the things I dislike most about the Beast days is having to cancel engagements. Many times, Mrs. Dr. C and I have tried to schedule an event, an outing, or a medical appointment only to wake the morning of that day and find I just can’t do it. Those ugly days are when my motor and mental malfunctions are at their maximum.

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(Re)learning Mindful Resting Involves Working at Letting Go

I have found that rest — boring as it may be — is the only solution. If that means I cancel, so be it. If I try to avoid the resting time, then the disabling symptoms extend that 24-hour ugly day into 48 hours or longer. I can’t pay that price, so we cancel and reschedule. Routine requires flexibility without guilt.

Mrs. Dr. C keeps the calendar and tries to ensure that there are days in between outings for recovery and rest. We work through our calendar and schedule only one major event a day, and fewer than three a week. She also gives me the heads-up on upcoming events. It gives me a grounded sense of what lies ahead. Routine must fit individual needs and expectations.

Routine can also help to limit surprises and unexpected events. It decreases stress. It helps one develop a body clock that has a sense of what is coming next. Switching is harder when we get older, and even more so when we are battling a chronic illness. If there is a big struggle to shift activities, it adds stress — often intensely.

Routines, like sleep management and regular exercise, can help to improve system regulation. Following a weekly routine also helps. I know that my optimal five-day routine consists of one day of heavy physical work or a major event, followed by a rest day, and then two light motor activity days. I can set my weekly and daily routines to be productive and keep the Beast at bay.

Keeping a routine is of great benefit to me, but it is not easy. I can’t control ugly days and off periods, but I can control what I do during other times. Admittedly, I had to learn how to create a routine, set goals for projects, and know that failure to get something done today doesn’t mean I can’t get it done at all.

I can lay one brick at a time and make progress when I can use what I can control. Routine builds on the use of self-autonomy and strengthening self-worth.

An article in the Journal of Nursing Scholarship noted that, “Living with a chronic illness is a self-management process that includes tasks and skills related to coping with the illness and growing as a person.” To continually grow as a person, I need to show up for each part of my personal TBM-based rehabilitation plan. Routine helps me to show up, making life with this chronic illness just a little bit easier.


Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

Comments

Mike avatar

Mike

Dr. C,
I am in earlier stage of Parkinson's, that is your posts still resonate for me. My routine is centered around Parkinson's
specific exercise routines. My wife keeps me challenged. Regular sleep is imperative for my well being. My sheets allow me to move better than my old ones, the height of my bed is is good for my short legs. I take melatonin if I struggle with sleep. Posting on these sites keep me sharper. Blessings, Mike

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Brooks Watson avatar

Brooks Watson

My husband was diagnosed with Parkinson’s about 1 year ago. I did not go to my husband’s first Dr. Appt. but, did go with him for the MRI that was supposed to locate a marker in his brain to confirm the disease. He was then put on a prescription and told to check back in 6 months. I did attend the second Dr. Appointment (6 month check in) but wasn’t very impressed. I don’t know who the “Super-Star” Parkinson’s Dr’s or Medical facilities are in the US. Do you have any recommendations? Most appreciated.

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