As we enter the Season of Miracles, I wanted to write today about something that’s been on my heart. Joy and Miracles and hope for the future.
There is so much hope that comes with Christmas and Hanukkah – the Birth of the Christ Child, the Miracle of the Oil burning for 8 days – and I want us to see that despite Chronic Illness, there can still be joy and miracles and things to look forward to.
After living with Chronic Illness for over 30 years, my list of physical ailments is long and continues to grow. I also have a mental illness to deal with which will be with me for the rest of my life.
Having Bipolar Disorder was a frightening diagnosis for me, but after finally getting it under control with the proper medications, it’s become a real non-factor in my life and I often forget that I have it.
To me, that’s a miracle.
Each year though, my physical pain gets worse, and so does my Chronic Fatigue. I struggle more with pain management and all the side effects, but I’ve also learned new tips and tricks to help deal with my days – another reason to feel hopeful.
In a previous post, I wrote about complementary medicine and how it can help with Chronic Pain. I am a true believer in trying new solutions for old problems and had some great feedback about this article. I hope you were able to incorporate some of these ideas, or will look at the post to give them a try.
Living with Chronic Pain can be a bittersweet encounter – bitter because of the pain and side effects and all the negative changes in your life, but sweet because there are still things to be grateful for.
There is new research on the horizon for diagnosing Fibromyalgia – the work being done to develop accurate blood testing has never been more exciting, and with science on our side, things are bound to have a positive impact in our lives.
The sooner we get a true diagnosis, the sooner treatment can start.
Treatments themselves are becoming better too, now that we understand that Fibromyalgia isn’t an autoimmune disorder and that its roots lie in the nervous system and the inability to communicate properly with the brain and spinal canal regarding pain signals.
Although there haven’t been any new medications released to treat Fibro, Gabapentin is being used more commonly in conjunction with the approved medications (Savella, Cymbalta and Lyrica) with good results.
More and more patients are becoming involved in Research for their health conditions, and Clinical Trials are being held across North America on a regular basis.
For more information about clinical trials, you can sign up here at ClinicalTrials.gov to see if you qualify for studies on a variety of health issues, not just Fibromyalgia. Another good spot to try is Patients At Heart. For Canadians, this link takes you to the Health Canada Clinical Trials website.
Another area where I’m seeing hope and miracles is in Patient Advocacy. This is a fast growing area where Patients become involved as authorities in their lived experience and work together with Health Care Partners to make changes in how health care is delivered.
One of the largest national organizations in Advocacy is WEGO Health. WEGO Health works with Patients in a wide variety of areas, offering opportunties to share you stories and help to impact change in a number of different ways.
They highlight a number of different annual conferences that take place in North America, and provide opportunities for you to share your story and get involved in various projects.
Patient Advocacy at an organizational level is becoming extremely important as well. If you want to be involved, simply contact the health organization of your choice, and ask them how you can become a Patient Advocate.
Volunteering your time to share your health story and help others is a great way to give back, beyond simply “making a donation”. Financial help is always needed and appreciated, but you can make a real difference as well in sharing your experiences.
Speaking of volunteering, this is an activity that has given me the greatest joy since becoming disabled. I do volunteer work for a group in BC, Canada called the Patient Voices Network, where I act as a Patient Advocate for a variety of Health Care initiatives.
I currently sit on 5 health-related committees,. Two are with the BC Emergency Medicine Network. Another is a Surgical Quality Improvement committee and another committee is devoted to ensuring Quality Control for all the Laboratories on Vancouver Island, BC.
Finally, I am a member of the Oversight & Advisory Committee for the Patient Voices Network, a role I’ve held for 3 years now. We oversee the activities of PVN and ensure that Patients are getting opportunities to share their voices in making change in health care.
I have also recently been working on becoming a Coach for PainBC.ca, allowing me to work directly with people with Chronic Pain and helping them find solutions for situations in their lives that they require some guidance with. I expect that work to start in 2020 when my training is complete in mid-December.
These volunteer opportunities allow me to give back to the community in a variety of ways while still taking care of my health. I devote approximately 20 hours a month to all of these committees which is manageable without overdoing it.
I love the variety of experiences I get to be involved in, the people I work with (surgeons, Government officials, other patients, etc.) and the opportunity to stretch my wings and try new things beyond my day to day life.
I’ve even been sponsored to travel to various conferences and to take courses such as the San’yas Indigenous Cultural Training.
I share this with you to show you that even if your health isn’t the greatest, you can still participate in volunteering in ways that make a difference.
Another volunteer suggestion is this: if you are a crafter, find out if your local hospital has need for knitted or crocheted items and take on the challenge. Blankets, baby items and more are often for sale in the Hospital Gift Shops and you can have a real impact on someone’s life with this kind of giving.
I know I’ve been very comforted in times in the hospital when I’ve been provided with a beautifully created blanket!
Season of Hope
I trust you are getting a sense of the hope and miracles I started this post with. There is so much potential in our lives even if we are disabled by pain and our physical and/or mental illnesses.
We must let go of the old ways of thinking that our good days are behind us, and start celebrating the wonderful things we have yet to accomplish.
Think about what you’re good at and find a way to incorporate it back into your life. What makes you smile? What makes your heart skip a beat? Find a way to bring that joy back into your life and see what changes.
Pain is easier to manage when you have good things to look forward to. Fatigue seems easier to handle when you’re active and busy, both mentally and physically.
I hope this post was helpful. I appreciate your comments below and look foward to sharing a magical Season with all of you! Remember…