Hello – azurelle here, your new article editor. The other day I happened upon an article written by Kelly C, someone who has chronic migraine much like myself and thought her message applied to just about everyone, not just those living with migraines.
Actually, it’s amazing how things for people with migraines have changed. Thirty-some years ago when I was diagnosed with chronic migraine it was a rare condition with no real treatment protocol. Luckily that was also when the internet was starting to take off and chat rooms became available. Almost immediately chats about medical conditions appeared and became life-lines for people living with rare diseases and conditions. Finally, there was a way to connect with people who understood what you were going through! It was the forerunner of forums like Ben’s Friends we have today.
Three decades on and I continue to participate in online forums, including migraine.com where I happened upon a wonderful article about taking care of yourself and your chronic/rare condition. The author thought it was something she needed to hear again and I agree with her. Below you will find her article in full, which is full of important reminders for all of us.
I sent the following message to a friend one night and recently re-read what I wrote, as it was hanging out in my “Notes” tab. I quickly realized it was a much-needed sign that I actually needed to re-read that message and apply it to my own life.
LACK OF SELF-EMPATHY
“All you’ve gone through lately with misdiagnoses and then correct diagnosis has just been slow to come together, but because of this, something good will come to you. You deserve it.”
Helping a friend with a new and serious diagnosis was eye-opening, especially after reading what I had sent to her a few months after we had talked. I realized that I’m sometimes too hard on myself, especially since I’ve only been dealing with my diagnosis for a few years.
Re-reading that note I sent my friend made me think “Am I doing this for myself? Am I showing her a good example by doing the things I suggested to her and following through on my promises and goals to myself?” That answer was likely a “No.”
RE-ORGANIZING LIFE AND PRIORITIZING SELF-CARE
It was time for me to sit down and write down ideas on how I could re-organize my life and get things back on track, for myself. I began with my bullet journal/planner. I’ve always invested in them, but halfway through the year it would get too cluttered, fall apart and thus, my goals would too.
So, I went to stores, looked online and finally found one that would be perfect for me. A simple, calendar and planner, that would allow me to write in weekly and daily goals if I chose to. My friend, I mentioned above did the same thing. Because we have both been going through some very significant medical struggles making it hard to follow through on most things, we thought up an idea that would be very beneficial for our mental state, our self-care and keeping ourselves accountable.
But most of all, when we weren’t able to, we promised we wouldn’t feel guilty, we would just alter our weekly goal so that it would be something we could attain.
SETTING ATTAINABLE GOALS
On the side of each month, in the Notes section, I gave myself a weekly goal – one that I was excited to do, one that I needed to absolutely complete and one fun goal, if my body was up to it. Some of these weekly goals were: Save $100 from dog-walking and put into your savings jar, Redecorate upstairs, No eating after 7pm, Go for a walk around the block. I kept my goals vague for this article, but try to be as creative as you can. When I’ve been really ill, one of my goals was “Go to the grocery store and buy Gatorade”. Seems dramatic, but it really helped me when I was struggling with migraines and other illness to just get out, get fresh air and walk a little bit to get my blow flow going.
Other small goals aren’t fun, but let’s face it, they have to be done. Some of those include: Call Neurologist and schedule nerve blocks, Find a new GI, Write for 5 hours on X day. But once you’ve accomplished those goals, you start to really feel successful day by day and look forward to your next one.
CELEBRATING SMALL WINS
My point is, goals don’t always have to be so monumental. New Year’s is a time where a lot of people have a deep feeling of guilt and regret for not following what their “resolution” was the previous year. Do yourself a favor and make your goals attainable, reachable, and most importantly, fun and rewarding. So when the bad days come along, you don’t feel guilty for having to push back a deadline you made for yourself the week before. Alter your goals if you need to. Change your mind about it? Change the goal.
BEING GENTLE ON OURSELVES
Don’t be too hard on yourself. Journaling and planning are great ways to hold and keep yourself accountable all year long vs. just the first 3 months of the year and forget about what it was you wanted to do this year. Take life minute by minute – you’re affected by things that some will never understand. They certainly might not understand that going out to the grocery store is a goal (and a hefty one at times) that your body cannot do all the time!
ABOUT THE ARTICLE:
the original article from March 2018 can be found here: https://migraine.com/living-migraine/new-diagnosis-feelings-support-yourself/ There are also numerous other articles of interest to anyone dealing with a rare or chronic disease, please take a moment to look around!
ABOUT THE AUTHOR:
Kelly C (#purpleproject ) was diagnosed with Crohn’s Disease 3 days after her 17th birthday. She’s passionate about helping others with IBD and other medical conditions. She also lives with RA, Hemiplegic Complex Migraines and other health conditions. She started blogging 6 years ago as a way to give back to this community. Kelly graduated with a Bachelor’s in Health Care Administration in hope of serving others in a non-profit setting. Other hobbies include running, advocating for organ & blood donation, playing with her niece and nephew nand campfires and sidepork.