In a weird way, I'm looking forward to this summer and the anniversary of my onset of ME/CFS. Let me explain.
I deal with the loss of quality of life fairly well on most days. I believe evolution has equipped humans with a remarkable ability to adjust, mentally and emotionally, to new circumstances. I think this innate ability is so hardwired into our brains that it sometimes plays with our sense of time. Have you ever said, "I can't believe that X event only occurred last year? It seems like ages!"
After the first four or five months of my illness, it became apparent that I was "in this for the long haul." So, at most times, I don't even think about what life used to be like. In some ways, it feels as if I've always dealt with this problem...as if it's just another fact of life. But one thing keeps interrupting the flow: the anniversaries of last year's big events.
December arrives, and I think: "Gee, last December, I was able to catch a flight without crashing"
Then January comes, and I think: "Last January, I was on a ski trip with my buddies"
Then: "Last April, I was sipping Margaritas in Cabo"
Then: "Last May, I didn't have to worry about whether I'd feel well enough to attend the annual family picnic"
And so on...
These are the thoughts that bring a little sadness into an otherwise pleasant day. So, while I don't look forward to knowing that I've been sick for an entire year (and I know that's mere child's play to some of you), I want to move past these regular reminders of what I was able to do last year.
It's not that I don't have hopes for the Equilibrant--I do--but it's unreasonable to expect an instant and full recovery. (Dr. C's words, not mine.) If it works and re-balances my immune system, it will take time. And who knows what level of functionality it might restore me to? Dare I dream of 100%?
Until then, it's best to look forward to the future--even if it IS a future with ME/CFS.
What is equilbrant?
ReplyDeleteBeatrice,
DeleteEquilibrant is a new treatment I'm trying under my doctor's recommendation. It is essentially an immune modulator. It seems to be one of the new hot treatments. A lot of PWME's are just starting to try it and some are having good results, while others haven't had any results. There's an explanation of it here in a post from late April: http://quixoticmeblog.blogspot.com/2012/04/new-doctor-new-treatment-plan.html
Patrick
I understand what you mean about wanting the anniversary to pass. I've been sick so long we call my healthy years "The Before Times." It often seems like a lifetime ago. But I crammed a lot into those years, traveling, hiking, horseback riding, gardening, etc. Even after I first became ill, we still traveled - we shifted to cruises, so I was able to see Hawaii, Alaska, and both sides of the Carribean.
ReplyDeleteYou know I'm betting you are going to be one of the ones to beat this, but just in case you aren't... the short term memory loss that many of us have has a way of skewing our sense of the passage of time. The years become a big blur, and we forget things that would otherwise be priceless memories, like the milestones of our children. Take lots of pictures, and keep a diary of the things you don't want to forget. Often that will help the memory "stick" or bring back a buried one. Even with that, there are still so many things I just cannot remember, and that's almost as distressing as the things I simply couldn't do.
You know, thinking about your upcoming anniversary has me remembering when I passed the 5 year and then 10 year marks, and how unsettling that was.
Here's hoping you never have to experience that!
Ash
Thanks Ash. I always learn a lot from the perspectives of those who've been dealing with this for longer than me. Yours are especially insightful.
DeletePatrick
Thank you! I know I sometimes write comments almost as long as your posts, and was a bit concerned you might not like that. But as a blogger myself, I know I always appreciate the validation from receiving comments, whether on my blog or privately thru facebook or email.
DeleteI know you want to stay abreast of everything going on in the ME/CFS world, research, etc, and one of the best places is actually facebook - many organizations & fellow patients who pass things along you might not otherwise see. Perhaps "Patrick" should have a facebook account? After the parody I'm sure you would be inundated with friend requests!
:-)