March 16 already? Huh. Since 2002, March 1 has been a significant day for me, the anniversary of when I got sick. I am usually very aware of that date each year, feeling some dread as it approaches: "Has it really been X years?" I usually write a special blog post (like my posts for my 5th illiversary and my 9th, last year). March 1 this year was a significant milestone - 10 years with ME/CFS - and yet, the day (and the week) passed without my even noticing.
In part, this is simply because I have been so focused on taking care of my son. As regular readers know, he has been completely incapacitated for the past 9 months from his treatment for Lyme disease, bartonella, and babesia (two other tick-borne infections). Lately, my life has been entirely revolving around him - taking care of him (he hasn't been to school in weeks) and in the past two weeks, even trying to tutor him so he can graduate on time in June. So, it's not so surprising that I didn't even notice my 10-year milestone had passed.
But I think the other factor is that, as much as I hate to admit it, ME/CFS has become an integral part of my life. I often talk about finding a "new normal" (in fact, that is the title of my book-in-progress), and I think it has finally happened. Life with CFS is now normal to me. I have become used to living with the restrictions and limitations, used to popping pills all day, used to the routines that define my days.
Through avid, nonstop exploration of treatments, I have improved enough that I can live my life; it's not my old life, but it's my life nevertheless. I have accepted that I may never completely get rid of ME/CFS, as much as I hate to admit that. But I have learned that it is not the end of the world. I am still here, still happy (for the most part), still living and finding joy in my life. I feel hugely grateful for the things I do have - a loving family, wonderful friends, the means to keep pursuing new treatments - and it has become rare for me to become depressed or slip into despair.
I would still give absolutely anything - including my own moderate health - for my son to be well again, but we are working on that. I will continue to be just as tenacious in finding ways to help him improve as I have been for myself.
This level of acceptance in no way means that I have given up hope of further improvements or even, someday, recovery. I find lots of reasons to feel optimistic in the direction that ME/CFS research is finally taking, with more studies focused on unraveling the physiological mysteries of our illness and more possibilities for treatment.
10 years...yeah, that seems about right. It is what it is. 10 years...no big deal, just another milestone passed. I have found a new normal, and I am living my life.
I have had Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) since March 2002. Both of my sons also got ME/CFS at ages 6 and 10. Our younger son fully recovered after 10 years of mild illness. Our older son still has ME/CFS and also has Lyme disease plus two other tick infections. This blog is about how our family lives with chronic illness, with a focus on improving our conditions and enjoying our lives in spite of these challenges.
Great post Sue. So excited to hear you have a book in progress !! And with a great title. I think you have the perfect balance of acceptance and continued interest in recovery. I sure hope your recovery is just around the corner. And I know Jamie's is. Just need to get that wretched Lyme out of the way.
ReplyDeleteThanks, Annie. Don't get too excited about the book. It's been "in progress"for about 7 years now!! And now that I am devoting my time to help Jamie graduate, I rarely find time to write. But someday...
DeleteThanks for the words of encouragement!
Sue
Wow Sue, you have a great attitude. My 10 yr is this June (another 2002 fellow onseter). My M.E. has been much worse this year which is perhaps why I'm having more trouble accepting and being at peace with it. But like you say, there is hope that there will be new treatments in our day.
DeleteWow. Ten years. That's a long time. I am so happy to hear your level of acceptance and joy in your life. It is a balancing act, isn't it?
ReplyDeleteBlessings to you and your family.
Elaine
beautiful post sue - best to you and your family - there is nothing more powerful than a tenacious mother - again, if you ever want to discuss my alternative treatments please contact - you may want to try the hydrotherapy with your son as they can do no harm and have no cost -
ReplyDeletemuch hope and healing to you and your family
heather
Well Sue, I am only half way to 10 years,and still tackle the anger and disappointment of this condition. Each time I feel down I read parts of your blog to find encouragement and positive thank you. Again thank you for the wonderful inspiration you give all your readers. Thoughts and prayers for you and your family, especially the boys as they journey down their path. Stay Strong! regards Kellie
ReplyDeleteI'd like to echo these comments. Your writing is so encouraging. Its a wonderful example of how acceptance of a situation includes acceptance of it positives not just its negatives. Acceptance also involves a recognition of our own ability to make positive adjustments.
ReplyDeleteWow...thanks, everyone, for all of the encouragement and support you have given me - both today and over the past 6 years since I started this blog! I always say I get more out of it than what I put into it, and this is a perfect example! Thank you.
ReplyDeleteHopefully, in another 10 years, I will no longer need this blog because science will have provided us with effective treatments that allow all of us to get back to doing whatever we want!!
Sue
((HUGS)))
ReplyDeleteLove Leanne
There's nothing to say but ((((SUE))))!
ReplyDeleteI'm so sorry to hear about Jamie. I hope things turn around soon.
ReplyDeleteI apologize for not commenting in a very long time. I somehow lost all my feeds and have been trying to figure out how to rebuild them. Which I just did.
Ten years is a long time but you definitely have a great balance in perspective. I have always liked that about you.
Oh I am sorry to hear about your son Sue! I did not know...
ReplyDeleteA new normal... I get that. Hugs to you both!
What an amazing attitude you have and what a gift you give us all with your posts. I will anxiously await your book AFTER Jamie graduates! Thank you for all you share and for making the road so much smoother for those of us who have followed you!
ReplyDeleteHi Sue, I just recently found and started reading your blog. Its been over 8 years for me and I find I count each year as well. I completely relate to what you mean by 'a new normal'. x
ReplyDeleteI am so very sorry your son is in such a struggle. Hope better days come soon for him.
ReplyDeleteI have forgotten the exactly but it is 20 years for me here in March of 2012 that I got sick with what at the time I thought was a virus and bronchitis....life never went back to the way it was before March of 1992. So hang in there....hopefully they will come up with a cure by the time you would hit 20 years if not...you'll forget the date, too, as it does become our new normal.