The last several years I have found myself in the position of saying no to family outings more often than saying yes. In order to do more each day, or even just the next day, I have had to give up many things that I once loved. Balancing my life while living with chronic pain, cognitive loss, and anxiety is an extremely difficult task, but one that is becoming normal for me. It is with great sorrow that I recognize it will never feel totally normal to my family or friends. Not being able to participate in so many family dinners or cups of coffee with my friends, not to mention canceling these events at the last moment or the day before, creates one of my hardest acceptance struggles; how to continue to show them my appreciation, love, and affection from a distance.
The first five years I spent adjusting to living with my new disabilities, I found myself both apologizing constantly for not participating or pushing myself to participate to not disappoint them. Neither one of these strategies worked for me or them. Apologizing constantly just kept me swirling in the victim role. Participating despite my multiple issues sent me back into the house and onto the couch or in bed for a period of one day or even a week, clearly that’s not healthy. The readers of my blog know that my goal in living with chronic disabilities is all about living as many best and most positive moments and days that I can. The same readers also know that I, like them, give up a lot in order to take in a lot. That sounds very contradictory, but, it’s not; there are certain activities I just can’t do anymore and other activities that I need or want to do. In order to try and keep this positive balance I invite my family over to my house for dinner, I make several weekly phone calls always ending with “I love you“, I send little social media links to them, and I always reach out and remind them that I am here, I’m just different now and that it’s just another wheel in the circle of life.
My current journey doesn’t allow me to be in places with loud noises, it’s difficult for me to be a passenger in a car driven by someone else, (I frequently curl up into a fetal position, terrified that we’re going to get into an accident when I’m a passenger, this creates a lot of anxiety in the driver and the sorrow of seeing my reaction creates anger (remember that it’s easier to be angry then it is to be sad) in everyone), I’m not able to be spontaneous anymore, everything must be planned at least a day if not a week in advance to help with both my anxiety levels and to plan well my activities leading up to that day in order to, hopefully, have less pain on the day of the event. It’s still really sad for everyone that I’m in a relationship with, (including myself) that I’m so often not capable of simply going to dinner or a sharing our moments of life while going out for a cup of coffee. The balance that I started creating in the sixth year of my new wheel of life is beginning to feel normal to us all now, however, I still sigh, and occasionally cry, tears of sadness as completely accepting this situation is a day to day task.
I can do much less now than I could before when I only lived with the pain and brain fog of fibromyalgia. It can become very tedious living with even less capabilities. The gift I can give my family and friends in my new life is to not make their life tedious as well. Suffering is optional. That statement is difficult to understand when you are indeed suffering, but it is my believe that I have the option to cry or sigh, to miss out on that dinner or cup of coffee with a friend but carry-on in the next hour or the next day with life, my life. If that’s the best I can do then I’ll take it, its a lot better then not being alive at all.
Remember to cherish the gifts you get in the moment,
Lucinda Tart, Pain Peer, Advocate for the Positive, MH;MSW