Chronic medical conditions inherently, unlike temporary afflictions, possess the potential to become emotionally disabling. The capacity of any normal human being to manage the intense emotional suffering which so often accompanies the physical pain engendered in chronic medical conditions may prove finite for most of us. I try so hard to stay upbeat, appreciate the good I do have in life and not allow myself to become overwhelmed by the negative, toxic emotions which can accompany chronic, often disabling, medical conditions. Suffering from two incurable conditions can indeed prove incredibly challenging when attempting to maintain one’s emotional sense of well being. But reality hits, life happens and self-pity can overtake my emotions despite my best efforts. It’s not what I want to focus on, but sometimes you just feel broken and discouragement takes over.
I had the joy of one of our four sons and family visiting for the weekend. We had a wonderful time being around them and our grandsons. I had no problem the first day watching them all participate on go-carts, bumper cars, and even a challenging rope climbing on multiple rope walks suspended close to a twenty-foot ceiling. And then the next day, we all went to a farm to try the corn maze. I quickly realized that just the hayride to reach the entrance to the maze would cause too much damage with the bumping causing subluxations. I also learned that the course we would walkthrough would be on uneven ground that also was rocky. That would mean, for me, having my legs and feet subluxing or even dislocating so, I had to step aside, take some precious photos and then watch my extended family all leave for the adventure. And then, tears and self-pity crept in. I became so disappointed with myself that I was not able to pull myself out of the emotional tailspin I found dragging me down.
No matter how hard we try to work with our emotions, we don’t always succeed staying on top of them. For me, there was true heartbreak and sadness to see my family go off for fun and have to step away to remain medically safe. I have such limited time to be with our four sons, their wives and our grandchildren so as not to be able to engage in such enjoyable activities with them while visiting just hurt and made me sad. And then the emotional beating I gave myself made it even worse. I was stuck on self-pity and knew in my heart it was achieving nothing but making me unpleasant to be around.
And then, after dealing with this negative emotion and feeling embarrassed by it, I happened to step onto the scale and was surprised to find I was up five extra pounds, clearly caused by inflammation in my body. All I could think of was that I had eaten at a new restaurant the day before and just perhaps I was reacting to something in the food. It would help explain why I wasn’t feeling myself and added to not being able to dispell these emotions. The next AM, I woke up to being three pounds lighter, clear-headed and ready to take on the day.
With EDS, inflammation in the body just creates havoc, feeling foggy-headed, more subluxations or even dislocations, and a general overall feeling of not being well. Living with Ehlers-Danlos Syndrome is such an emotional roller coaster. When I feel good, I am on top of the world and I quickly lose perspective that I might again regress. With this condition, you go through waves of ups and downs and added heartbreak and disappointment. What a dream life would be to have consistency, but that is not in the cards with EDS.
I need to keep making the effort to connect with that emotional strength which I have had to tap into so often in my struggle with chronic medical conditions. But, also have to accept that I am human and I cannot always be on top of all this emotion and pain that comes with my condition. I want to be strong and a positive example to my family as one that is trying to cope in a positive manner. May there be many tomorrows that are brighter and easier to take on!
May life be kind to you,
Ellen Lenox Smith