100 Tips and Tools for Managing Chronic Illness – What I learned
Everyone suffers from aches and pains from time to time. Some suffer all the time. Unfortunately, I’m one of those people. You wouldn’t know it from following this blog or scrolling through my social media. Why? Because it’s not something I speak of much. It’s not something I dwell on but something I fight through the best I can. Today I’ll share with you something that’s really helping me these days — 100 Tips and Tools for Managing Chronic Illness. Here’s what I learned from this great little book.
First, let me start from the beginning since this probably all comes as surprise to you (if you’re one of my regulars here).
My Own Journey With Chronic Pain – an abbreviated version
I had a minor car accident long ago. That minor crash brought about major back problems — herniated discs that required years of chiropractic care, physical therapy and pretty much anything that would help me manage my resulting chronic back pain. It’s been touch and go through the years but manageable.
Then one day all the pain came back with a vengeance. I was really tired all the time. My back ached. My entire body hurt. I was diagnosed with Fibromyalgia somewhere around 2007. More visits to therapists, doctors, etc. and that too was under control for some time. The occasional flare-up forced me to take extra days off work but nothing major.
Then I had my son, life went on. I managed the pain, lived through it. Did the best I could. Every. Day. Even when I was exhausted and sleep deprived.
Then and Now – Living with Chronic Illness
Fast forward to 2014. I got pregnant again. I was older. It was a difficult pregnancy and it was predicted that baby girl would be a large baby (thanks gestational diabetes). The back pain was back and worst than ever. No relief in sight (meds were a no no). I tried everything. I was getting really heavy. Every part of my body ached. It was a struggle to find comfort. I assumed it would all go away after birth and once I lost the extra weight I was carrying around.
No luck! The pain was here to stay. Baby girl was born at 10lbs (ouch). I felt relief initially but then all the pain came back and then some! Joints hurt now too! There was back pain, muscle pain, and the leg cramps… those were the worst. I was tired. Exhausted! The fatigue was the worst part of it. There were days I couldn’t function.
Back to the doctor I went. More therapy. More drugs. The pain sucked and I couldn’t get it under control.
New diagnosis. I have suffered from psoriasis since childhood. Now I was suffering from psoriatic arthritis too!
Between 18 and 42 percent of people with psoriasis, an inflammatory skin disease, also have psoriatic arthritis.
With time I learned to accept that I was now a chronic illness warrior. Flare ups continue. The pain never completely leaves.
Sometimes I feel defeated
Eventually I had to cut down on everything. Work. Social life. Exercise. I’m usually too tired to tackle it all.
Still I don’t complain. I fight through and do the best I can. Like I said before, you’d never know it from following this blog or my social media channels. Again, not because I’m trying to hide it. I’m a “glass half full” type of person. No time to dwell on the negative. I like to focus on the positive. Always have, even before chronic pain. Now that I suffer from chronic pain it’s also become a sort of defense mechanism, if you will. It’s kind of what keeps me going. I don’t want my pain and struggle to make me a victim.
Still, the struggle has gotten harder lately. I’m trying to juggle mom life, working from home when I can. The pain isn’t getting better. The fatigue is getting worst. And if it weren’t for the fact that I’m a mom, I wouldn’t even get out of bed on most days.
There are days when I feel defeated.
100 Tips and Tools for Managing Chronic Illness – Book Review
100 Tips and Tools for Managing Chronic Illness, a new book by Joanna J. Charnas landed in my lap. You have no idea how much I needed to read Joanna’s words at this very moment.
About the book
This is a self-help guide for anyone who has a chronic illness or who knows and cares about someone else who does. It’s divided into 10 chapters that concisely address a comprehensive range of issues including
- Meditations on mindfulness
- Cultivating a positive attitude
- Facing setbacks
- and much more.
Joanna’s words speak to me! Managing chronic illness demands constant mindfulness and management. As a chronic illness warrior one needs to realize that this is a process that constantly evolves over time. In her book, Joanne provides 100 different methods for accomplishing this task, offering personal examples that are humorous, heartfelt, and insightful, and I can relate to pretty much every one of her experiences.
Reading Joanne’s book I found new strength. Her words and advice are what anyone who lives with chronic illness or knows someone who does needs to hear. We can all benefit from reading her tips and tools for managing chronic illness!
What I learned about living with chronic illness
I learned that I am not alone. I really needed that reminder! Thanks Joanne!
As a chronic pain sufferer, I’m really good at masking what I’m going through. Again, not because I’m hiding it but because I don’t dwell on it. It’s part of my everyday life. I’ve learned to live with it. Not complain about it. Find the positive. Just go on. Those of us living with chronic illness often do this.
I learned that I need to speak up.
I often get stuck in my head. I don’t share my needs with others. I don’t ask for help when I need it. I forget that there are others who can relate, others who can help.
Here’s an except from Joanne’s book that really spoke to me.
This is what happens when we are sick and suffering. We can be silent, or we can speak up… Managing chronic illness requires self-advocacy. Speaking up when we don’t get what we need is hard. It means disrupting the current equilibrium of our environment. Sometimes, however, it is important to go against the flow to get what we need,
There were other words that also spoke to me. If you’re already following me on Instagram you probably saw this post.
I learned that there are different ways to handle specific situations and that it’s okay to do what’s best for me (without guilt).
Joanne shares her own experiences. She talks about how she deals with the day to day — parenting with chronic illness, traveling with chronic illness, and more. Many of her stories are humorous and it’s always good to laugh.
I learned that I need a plan.
Joanna talks about planning activities that relax and help you feel restored. She talks about creating a plan as a way to stay as healthy as possible. I realized that I needed a plan for those not so good days. Maybe then I wouldn’t feel so defeated.
Do you suffer from Chronic Illness? Do you know someone that does? I highly recommend reading 100 Tips & Tools for Managing Chronic Illness.
