Just a quick note for today, tomorrow I will add more personal experiences that may resonate of with some of my Fibro Peers.
Today, I want to share a great activity that has really assisted me over the last month. (Note: I was rear-ended in 2012. I was stopped at a red light but a van behind did not stop; hit the rear of my car at 30mph. I have spent the time since then, recovering from many things). This “adult coloring book” really allows me to space out and remove myself from pain and negative thoughts! Please see link.
Tomorrow I plan to discuss doctors and the realities we Fibro Peers all deal with.
This is one of the better descriptions I have found posted on the internet. The niams.nih.gov has many evidence-based, simple, readable posts about chronic pain.
Follow this link to learn about your new chronic pain: http://www.niams.nih.gov/health_info/fibromyalgia/fibromyalgia_ff.pdf
As usual, any questions or thoughts, please post to your Fibro Peers.
Lucinda Tart, Fibromyalgia Peer Advocate/Life Skills Coach
A Visual of different, but wonderful, inner selves, shining outward as we travel our new path.
“Two roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveler, long I stood
And looked down one as far as I could
To where it bent in the undergrowth;
Then took the other, as just as fair,
And having perhaps the better claim
Because it was grassy and wanted wear,
Though as for that the passing there
Had worn them really about the same,
And both that morning equally lay
In leaves no step had trodden black.
Oh, I marked the first for another day!
Yet knowing how way leads on to way
I doubted if I should ever come back.
I shall be telling this with a sigh
Somewhere ages and ages hence:
Two roads diverged in a wood, and I,
I took the one less traveled by,
And that has made all the difference.”
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Find on Amazon, I used this Book with great results; complex, take it slow 🙂
Being diagnosed with any life changing syndrome or illness changes everything. Most people can’t instantly accept this loss, or make any changes in their lives until they absorb this new situation. No one would ask for this, it’s just as shocking to our emotions as a divorce or death of a loved one is. The five stages of grief generally comes up during the first months or years; denial, anger, bargaining, grief and acceptance (Kubler-Ross). I know this model well. I was diagnosed 17 years ago, it took me a year or so before I began to search for answers about how to live my new life.
I don’t expect you to be any different, but I do hope that after coming to terms with your pain you discover how to seize hold of the concept of wellness, beginning with taking back your own life by using “personal responsibility” (Copeland, Mary Ellen). I will discuss this further in future blogs, lets just keep the happy thought that there are ways, like the one mentioned above and others, which can enable you to work towards a new joy in your new life!
In the beginning, give yourself a break or three. Draw boundaries with family and friends (they truly don’t understand what is happening to your body or, your mental stress load) by taking the time to draft a loving but firm letter of what you can and can not do at this time (type in the “search” box for letter you can use). After it’s written reread it at least once, edit, hang on to it and dispense as needed. Remember to tell them how much you appreciate their support. Don’t forget to inform them right away when you are having an extra bad day. Tell them that you sincerely don’t mean to lash out, but you are not doing well today. When they feel hurt by your roller coaster emotions, remind them that it’s a bad day for you and that you are doing your best.
Please search out support groups! Brick and mortar or online groups are vital to understanding your pain and feeling that support from peers who have walked in your shoes is irreplaceable. This blog is just one of many places you will find on the internet; when I was diagnosed, I found exactly three! The amount of information available on the internet today is staggering, but, that is much better than very little. A word of caution; be discriminating. You know what types of treatments have worked well for you in the past, however, they may not work now. Trust your own feelings first; your body will let you know if the prescribed treatment or alternative treatment is working, for you. Don’t instantly get caught up in the maze of options out there. Take your time. Don’t hesitate to advocate for yourself when the treatment is just not working for your life.
Another important thought about the beginning of your journey is this; your friends and family, who have loving and good intentions, will find many solutions for your chronic pain. Politely thank them and if it doesn’t seem right for you, ignore it. Hopefully this will be the end of the discussion. If not, and you value the relationship, try taking them to coffee or tea and explaining that you appreciate their research but you are already trying “blank”.
Remember, you can always use the letter you wrote if all else fails. Remember, there is no one right way to have chronic pain; actually, chronic pain is vastly different from person to person with common threads. I hope you find a place here, and elsewhere, that helps you to become the best person you can in your new journey in life. In the meantime, run a Epsom salt bath, watch the birds, read a good book, meditate, journal, take a nap every day. Be good to you!
Lucinda, MSW:MH, ILS, Fibromyalgia Peer Advocate/Life Skills Coach