Getting Up Is Hard To Do

Similarities and commonalities among RA patients

It's a well-recognized fact that no two cases of rheumatoid arthritis are identical. The level of severity, the specific joints affected, treatments or medications which are found to be most effective, the limitations imposed, and specific challenges faced are among the variables associated with the disease. Just as there are differences though, there are also commonalities and similarities. For example, people who live with RA have all experienced pain, fatigue, and stiffness.

I personally have lived with rheumatoid arthritis (RA) for over 30 years. Not only have I "lived it", I have read just about everything I could get my hands on about the disease. A book entitled "Getting Up is Hard to Do - Life with Rheumatoid Arthritis" by Wanda James, came across my desk. After reading the title out loud my first reaction was, "That's for sure!"

My next impression after glancing at the illustration of the Tin Man which adorns the cover was "Clever, and appropriate!" The 148-page book appeared to be a quick read. It offers 17 chapters, Survival Tips, General Tips, Coping Tips, Facts about Rheumatoid Arthritis, a Glossary, and a Resource List, but quite honestly, I didn't expect much. What could this book possibly say that I hadn't already experienced or learned in my own 30-year battle with the disease? I opened the book anyway and rapidly found myself drawn in. With each page that I turned and absorbed, I repeatedly thought, "Yes, exactly!"

So much of the book felt familiar, including discussions about:

when symptoms first appear

searching for a diagnosis and appropriate treatment

the interference and disruption RA causes as you try to continue working

progressive disability

financial decline

applying for disability insurance benefits

frustration and depression

A few parts of the book seemed unfamiliar to me, but I suspect they will resonate for many other people who have rheumatoid arthritis, such as:

repeated, unsuccessful attempts to take disease-modifying anti-rheumatic drugs

severe medication side effects

long-term prednisone use

experience with Vocational Rehabilitation Services

brain fog and memory loss

isolation and avoidance of social situations

visits to a psychiatrist

On the subject of pain, Wanda James wrote, "Chronic pain is particularly difficult to come to terms with emotionally. If I were to chart the components of RA, I'd put pain at the top and the other disease-related words beneath it. Words like anger and depression. They follow no order nor schedule. They've wreaked havoc with my life". James continued, "The key, I think, to living with pain that can't be controlled is to learn to adjust to it and work around it. One common and effective method to achieve this is by having something else to focus on. Distraction is the name of the game".

On the subject of anger, the author wrote, "Have you ever hit your thumb with a hammer? Got your hand jammed in a door, window, or drawer? I'll bet you didn't feel particularly mellow afterward. That is the anger born of pain. If you multiply that anger by seven days, four weeks, and twelve months, you'll arrive at the sum total of the anger a disease like RA can produce". She continued, "Two demons sit on my shoulders. One is pain and the other is anger. If I let them, they would destroy me, but I fight them. And if I lose the battle, or when it all seems too overwhelming, I give in to a third demon - depression".

On the subject of family, James said, "Family support is crucial. It's bad enough to have this thing every single day, but when you have to fight for understanding as well, there's not enough fight to go around". The words of the author flow from her heart and will touch the heart of anyone who has been saddled with RA.

A poignant poem, "Who Am I Now" sits on a page preceding one of the chapters. That particular poem along with all of the experiences shared by Wanda James combine to justify and validate the array of emotions felt by people living with rheumatoid arthritis. The book also serves to restore hope and renew the energy required to continue the day-to-day fight. As the last line of the book so appropriately summarizes, "Getting up may be hard to do, but giving up is out of the question". Two thumbs up!

To order the book, email wjames000@sympatico.ca, or phone (613) 448-2541, or write P.O. Box 45, Morewood, Ontario Canada K0A 2R0.