No, I am not tired of living with rheumatoid arthritis. At the moment I have gotten as used to living with RA as I think I could – both the ups and downs and everything in between. In the past, I often used to get a feeling of being too tired, a feeling of not being able to cope with my illness any longer. Things have since changed. I continue to learn the importance of living in the moment, and not worrying about what the future might or might not bring.
No, I am not tired as a result of overdoing things in the past few weeks during which my pain and inflammation has lifted. One of the priorities that I set for myself as I entered this recent period of decreased RA activity was the importance of continuing to take care of the amount of things that I commit to doing throughout the day. The last thing I want to do is push myself to far and increase the probability of entering into another flare.
No, I am not tired as a result of lack of sleep. During the past three weeks I have been getting more restful sleep during the night than I have in a long time – so much so that I have even returned to dreaming. During the worst periods of the past few months, I was neither sleeping well nor dreaming; my nights were one long gray period. The color is back, and I have already received comments that my eyes seem so full and alive.
No, I am not tired as a result of cutting out my afternoon nap from my day. I continue to sleep at least an hour in the afternoon. When I am dealing with pain and inflammation, the afternoon hours of 2-4pm are usually one of the worst periods of the day. I have gotten into the routine of taking my afternoon naps, and this is something that I probably won’t change anytime soon.
What I am tired of is a result of the increased levels of fatigue that I have been dealing with for the past handful of days. No matter how much I pace myself, no matter how much I rest, no matter how much I nap – that feeling of tiredness remains throughout the day, from morning to night.
It can be confusing in a way – living with extremely low energy levels that come from seemingly nowhere. Of course, I know where it comes from – my rheumatoid arthritis. But this is so unlike the more obvious cause and effect limitations that result from joint pain and inflammation. If that joint is red and swollen, I know why it is more difficult to move. With inflammation, there is absolutely no external signs of what is going on inside. It’s spread throughout the entire body.
Yesterday, as I stepped away from the dining table in order to lay now on the nearby couch and get a few minutes of rest, the image of the Energizer Bunny entered my mind. Although if that was me in the commercial right now, I would be the bunny with the cheap generic batteries.
I try to stay positive, but the overwhelming weight that fatigue continues to press onto my body. So I will continue to do what works best for me. I will pace myself. I will eat healthy foods. I will rest and take naps. I will ask for help if and when I need it. And like all other aspects of living with rheumatoid arthritis, this too will pass.
I think I will also add some mindfulness mediation exercises back to my day. To be honest, the time I spent on this activity has decreased since the worst of my RA passed earlier this month.
What are some of the ways in which you cope with fatigue?
Rheumatoid Arthritis Guy has been asked more than once, “What can be done to raise awareness of rheumatoid arthritis?” I think that all of us have the ability to raise awareness of rheumatoid arthritis, whether we live with this disease or not. In my opinion, real awareness comes from real people!
So today I would like to launch Rheumatoid Arthritis Guy’s first awareness movement: The Power of Ten. It’s easy, it’s free, and it’s something that each one of us can easily do.
The Power of Ten
Take ten minutes over the next ten days and talk to at least ten people about rheumatoid arthritis. Real awareness comes from real people!
Please remember to ask the ten people whom you talk with to please share this information with another ten people. That’s the beauty of the power of ten – it’s exponential.
I think it’s fair to say that most of us continue to deal with issues that arise from the lack of understanding of the illness with which we live. Things aren’t going to change themselves. Please do your part and help raise awareness of rheumatoid arthritis. All of use will be helped, and it will only take ten minutes.
Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!
If you are not already following Jules’ current series “Forty-Two Ways In Forty-Two Days” at An Attitude of Gratitude, you must check it out! Each entry continues to add a positive moment to my day. Forgiveness. Peace. Friends. Harry Potter. Work. Blogs. Mothers. It’s all there, and Jules is not even halfway through!
SO. Today is my forty-second birthday. I have to say that after reflecting on this in the days leading up to today-this is probably “mid-life” for me. The reason I am thinking this way is because there are many, many days that I feel “42”- but there are also quite a few days where I feel like I am “84”. Pretty much anyone with a chronic illness like RA will be able to relate to that on some level. But one thing I DON’T feel any longer- is younger than my age. The funny thing is- I am okay with that. I have thought about this long and hard most of the day and I am perfectly okay with where I am in my life right now.
First- my GOALS for this year:
1- It is my goal to blog “42 Ways in 42 Days”. For the next 6 weeks, beginning tomorrow, I am going to blog a specific thing that I am grateful for- not just what it is but WHY I am grateful for it. I have thought through and started my list, but there are plenty of spots open to add as I go along. If I have something else on my mind I can either do a second post here or I can put it at my less used blog on this server called “Just a place to Ramble”.
2- My next goal is to do something strictly for someone else at least once a week. Not a favor- just a service. This is something that I will have to annotate elsewhere, because I don’t want to feel like I am doing it to brag about it- but I do want to talk about the results and how I feel after.
Thank you, Jules, for this wonderful and inspiring series on your blog!
“The Etiquette of Illness is a wise, encouraging, and essential guide to navigating the complex terrain of illness. This collection of anecdotes and insights will help those who feel awkward and unsure about responding to a friend, colleague, or relative who is suffering. The book is also for people who are ill and want to engage with their loved ones effectively. We read about a range of people who are dealing with chronic illness, doctor-patient communications, and end-of-life issues-and who are striving to find their way with awareness and compassion.
Drawing on her years of counseling people with serious illness, as well as her own experiences with cancer, Susan Halpern presents an insightful book of the utmost relevance for patients, their caregivers, and their family and friends – a group which will, at some point, include all of us.”
Rheumatoid Arthritis Guy finished reading this book last night. I think I am not the only person who has experienced having a close family member or friend seemingly disappear overnight – just at the moment when I am at my worst and most in need of their support. Feeling are hurt, blame is assigned, and the silence continues to grow.
But as with anything else in life, communiction from both sides is required to move past the stalemate. As a person with an illness who lives with rheumatoid arthritis day in and day out, it is sometimes too easy to think that everyone else should have the same understanding that I do. “What do you mean you don’t know what a DMARD is compared to a NSAID?” Sure, I’m an expert on RA – but tell me you have Grave’s Disease, and chances are I will have the same blank look on my face that I see on others when I tell them I have RA.
Sometimes it easy to forget that other people in my life struggle as well to hear about my pain, to see me limp down the hallway to the bathroom in the morning. Maybe the words of understanding and the statements of support will come, or maybe they will be stuck behind the fear of either not knowing what to say, or saying the wrong thing.
What I like about this book is that it does not rely on a strict set of rules; there is no specific formula regarding the etiquette of illness. When either party does not know what to say, that just might be the best thing to actually say.
“I just don’t know what to say.”
“Of course we don’t know what to say. Life does not prepare us for the blow that bad news brings. We don’t want to make it worse, we don’t want to frighten our loved ones with our anxiety, we don’t want to voice our worst fears, and yet we need to call. There is no training program for what to say, and some of us, happily, have very little experience. Some people I have met have felt abandoned in hard times by good friends. Sometimes people who ar ill and feeling abandoned will call their friends, but that is rare. It is the role of the “well person” to reach out. While it can be hard to initiate contact, doing so brings pleasure and solace to both parties.”
And if you still can’t find any words, there are plenty of actions that you can do to help a person who lives with chronic illness get through the rough patches. You can drop off a prepared meal, you can send a cd with classical music or guided meditations, you can call and ask why type of book they enjoy reading and pick it up at the local bookstore, you can stop by for a short visit, or you could offer to take their dog for a walk.
Another area that this book focuses on is advice giving. All too often, the balance in my life with chronic illness is overwhelmed by symptoms, fatigue, emotional issues, medicinal side-effects, and medical procedures. Just getting through day after day can be quite a challenge, and I sometimes feel like a juggler: one mistake and everything might come tumbling down. So when an individual, although with good intentions, comes to me and insists that I should take medicine x or try treatment y, it can be to much for me to bear.
“These directives arise from the best of intentions, but they are not respectful of the needs of the diagnosed person. The person with the disease is trying to make sense of all the options put forth by his or her doctor and in the literature, not to mention other people who have been through the same thing. There are choices to be made about conventional treatment, alternative treatment, and complimentary care. The person who is facing an illness needs to find his own may and make his own choices. It is very difficult to say, ‘Here is some information I have that makes sense to me; see what you think,’ than to say, ‘You’ve got to do this,’ ‘Take my word for it, this is what you should do,’ or ‘I don’t know why you’re not doing as I say.'”
This book presents many examples of how both parties can work through the intricacies of giving and receiving advice.
As a person living with chronic illness, I have benefited greatly from reading this book. I will also recommend it to family members and friends who are close to me in my life.
What advice would you give to somebody who is having difficulty in finding shows of support, or who might be overbearing in the shows of support that they do provide?
Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!
A bitter pill: Price of biologic drugs often too high for poor, ill seniors who need them
“For people with serious diseases like cancer and arthritis, these drugs are often their last hope,” said Schumer, who plans another try when the bill hits the Senate floor. “To not price them fairly, at the behest of the brand-name drug industry, is outrageous.”
Consumer Groups Threaten To Withdraw Biologics Bill Support
“In all frankness, we cannot be supportive of any generic biologics legislation that would be an empty promise to the Americans we represent and serve,” the letter said. The letter, signed by AARP, the Consumers Union, the Coalition for a Competitive Pharmaceutical Market and other groups, was sent to House Energy and Commerce Committee Chairman Rep. Henry Waxman, D.-Calif.
The letter, also signed by the Generic Pharmaceutical Association, urges Congress to “reject the fatally flawed” biologics legislation proposed by Rep. Anna Eshoo, D.-Calif., and criticizes biologics legislation passed in a Senate committee earlier this week. Eshoo wasn’t immediately available to comment.
For some background on the battle of the exclusivity period of biologics that is currently taking place in the U.S. Congress (thing are currently moving in favor of the Biotech and pharmaceutical industries), take a look at my post of last week: The Battle Over Biologics.