Living Well: Pain, Fatigue and Memory Loss

Living Well: Pain, Fatigue and Memory Loss

I think of pain, fatigue and memory loss as the three-legged stool upon which a great number of chronic illnesses sit. They are present in each of my own diagnoses and are inextricably attached, like Siamese triplets joined at the hip.

I’ve found it doesn’t do much good to try and deal with any one of these primary issues while ignoring the other two. It just results in more stress, which makes everything worse for me.

Joy Selak

Joy Selak

For example, if I get an effective prescription for pain medication, but keep racing around trying to do everything I did before I got sick, it won’t take long for the medicine to become less effective and for me to be bound to my bed with disabling fatigue.

Conversely, if I am so exhausted that I curl up in a fetal position and stay in bed all day, but don’t address ways to ease my pain, I’ll stay exhausted and won’t be getting up any time soon.

And, if I try to manage memory loss by writing everything down, but don’t manage my pain and fatigue, I am still going to show up for the wrong event, on the wrong day, and at the wrong location. I know this because I have done this, more than once.

To effectively manage long-term illness, I have found I need to be conscious and pro-active in addressing pain, fatigue and memory loss — and this reduces my stress. I don’t include stress as a leg of the stool, as I consider it a side effect, rather than a symptom, of illness.

We chronically ill patients often speak as if we are at war with our illness, which puts us war with the self, which makes us sicker. At a recent presentation to a patient support group, a woman in the back of the room listened intently as I spoke about how I finally learned to “make friends with fatigue,” then she began to cry.

“How do I make friends with fatigue?” she asked. “If I stop doing what I have always done, the illness will have won.”

I saw myself in her tired face, tears running down her cheeks.

“I felt the same way,” I told her, “but in time I learned that if I didn’t make friends with fatigue, the illness would definitely win.”

Over time, illness taught me to throw out a lot of old assumptions I had about pain and energy and how much I could trust my memory. I’ve replaced them with “Living Well Wisdom” allowing me to manage my symptoms more effectively.

For example, instead of a “no pain, no gain” approach to exercise, I now stop when it begins to hurt. Instead of exercising on a set schedule and a set routine, I give myself options and only do what I feel like.

When I’m feeling tired, I no longer get a coffee for a quick caffeine buzz. I take a rest period instead.

The changes in my thinking listed have helped me move closer to living well with illness. Maybe they will help you, too.

YDLS2Cover.jpg.w300h451Joy Selak has been diagnosed with Interstitial Cystitis, Fibromyalgia, Mixed Connective Tissue Disease and Trigeminal Neuralgia.

Her book, You Don’t LOOK Sick! Living Well with Invisible Chronic Illness, takes readers through the 4 phases of chronic illness experience — Getting Sick, Being Sick, Grief and Acceptance, and Living Well — and is written from the alternating perspective of a patient and her physician.

Joy has two blogs, Joy Writes and Chronic Invisible Illness. She lives in Austin, TX.

Authored by: Joy Selak, Columnist

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Jill M. Jordan

I loved your article and certainly can relate it it. I am crying as we speak as I know someone out there knows what I am going through. And especially my memory which is slipping badly and I am ashamed of it. I will be in the middle of telling a story and suddenly just draw a blank. Very embarrassing as you know what they are thinking. My pain is everywhere . I am a diabetic who just recently went on insulin and every shot I take burns so bad, I cry. It is causing knots in my arms from shooting it so much. My stomach is out of question due to a botched surger. My thighs developed a rash and ache as do my arms. I am in stage 4 of stage 5 Kidney failure and cannot take all the anti-inflamatories , arthritis med. and etc.I have Fibromyglia; and you name it. I take 18 pills alone in the morning but my biggest grudge is all the hype on pills such as Hydrocodone and etc has hurt the person that really needs it. I am not addicted in any way but absolutely have to have them and then that is not enough. I have a blown disc in my back and have been in pain since 1983. What are we to do anymore? I have lost my independence in so many ways and it hurts real bad. I cant even drive as I fall asleep at the wheel due to sleep apnea and etc. God Bless you and I pray for your pain to ease. Sincerely, Jill Jordan.

Charlotte Ann

I also sit on that three-legged stool daily, but before reading Joy and Dr. Overman’s book, “You Don’t LOOK Sick! Living Well with Invisible Chronic Illness, second edition, 2012”, I often found myself wobbling on just two legs, or even barely balancing on one as I haphazardly tried to “put out the fires” that pain, fatigue, and memory loss created. Joy inspired me to start living again at a time when I had almost given up. She saved my life and got me through this past winter of despair!

Now her “Living Well Wisdom” gives me hope and answers. I use the book often as a reference when I start teetering on that stool and need to be reminded of better ways to live well. It will be part of my nightly routine again this winter giving me much needed comfort and JOY! Thank you, Joy, for sharing more insightful words! I hope you feel the admiration and appreciation from the heart of another chronically ill patient and now friend. God Bless!

When I think of the memory loss that goes with my pain, I think of how many tries it takes to remember someone’s name, even my partner sometimes. I just spent 5 minutes trying to remember one of my best friend’s last name. It makes me almost cry. I don’t even know how old I am much of the time, I forget the day of the week, the month, and even the year. Some people wonder why I have my phone always in my hand? It has every note, every single thing I need to know: medication reminders, nap reminders, reminders to eat, a reminder of when to shower at the right time to not be late for an appt. then when to leave for the appt. I hate it. I hate it. I hate it.
I am founder and executive director for a foundation for the chronically ill of any kind, it’s called The Chronically Awesome Foundation. We celebrate the gifts we do have and have found since we became ill. I try, whenever I get frustrated, to focus on those things I can do. I can write, I can write well in fact. I spent 15 years as VP of a software company, and I have not forgotten everything I did and learned there. I am good at things. When I am bothered by pain, by fatigue, by memory loss, I do what I tell my members to do, I say “Today I am Chronically Awesome because…” and I fill in the blank with something positive about me at that moment. Sometimes I have to reach far, “I am a great napper” but sometimes I remember “Today I am chronically awesome because I am a fantastic cook”. The rush of endorphins often brings me back enough to get me where I need to be, to bring back the memory I was seeking etc.
Thank you for this article. I will be sharing it with @chronicallyafnd on twitter.