After Lymphedema Perspectives
Early in my relationship with lymphedema, I realized that I would have to keep my perspective. I could not ignore lymphedema but it was equally important that it not dominate my life. That, as many things are, is easier said than done. Everything that had been my life was affected so how could lymphedema not dominate my life? During the first months of dealing with lymphedema, I was in pain and my ability to use my right hand was extremely limited. I could do practically nothing.
Things had to change.
The definition of insanity; if you continue to do the same things, you cannot not expect different results. While I hold that to be true, and I certainly believed it when lymphedema struck me, it isn’t exactly clear what a person does instead of the same thing they’ve done in the past. What exactly am I to do? I had to find the answers to that.
One of the hardest things during my initial adjustment period was learning what I could do and what would create difficulties. It was trial and error, with the errors producing significant pain and potential long term damage. My bullheadedness wasn’t the best ally, and I made some mistakes. I was in a hurry to get on with my life. I was always pushing to the edge of reasonable activities and often overdoing it.
It was a dark time when my therapist gave me a splint to put my hand in and the explicit order to ‘do nothing’. If this was going to be my future, I really wasn’t going to adjust. Luckily the rest gave my body a chance to recover. I know now that I was going to return to an almost normal life, but at the time the future looked grim.
Once I got through the total rest assignment, I still had to figure out what my life would look like. What could I do? Again, I returned to my normal duties with an eye to pacing and limiting the damage to my arm. That still left a big hole in every day. I needed time filling and activities and I needed a purposeful occupation. I didn’t have a clue what that would be beyond keeping my lymphedema managed and I didn’t yet know how to do that.
It seemed what I was doing was not good, for firstly I aimed to do something different. I would get different results if I did something different. It wouldn’t necessarily be the ‘right’ action but I would be able to figure out what worked and what didn’t, because either it worked or it didn’t. I realize that this is about as basic as you can get, but I needed that basic, basic, truth to be hammered in. I might give lip service to ‘knowing’ what to do, but since I wasn’t doing it so I didn’t know a damn thing. I just knew that I had to do things differently because what I was doing based on my know-it-all-attitude. That wasn’t working.
Simple. No one was waving a map in my face. I had the stop sign. Stop this now, my body had spoken. Lymphedema.
Easy does it was the attitude that I had to develop. However, in the past I had been an all or nothing worker. The signal for housework, as an example, was the point where I became disgusted with things and then I would housekeep binge.
Pacing is still a problem for me, but I have gotten better. I preferred all-day-get-the-job- done marathons to short spurts of anything. That had to change. I had to stop being the hare and start being the tortious on a racetrack that was no an obstacle course. But I still wanted to be in the race.
Early days, I kept things afloat as best I could, but mainly in respect to my mental well-being, rather than any white glove house inspection. My desire to go forward with a normal life, even if it was vastly different than my old life, served me well. Okay. So my bullheadedness did help.
“Since it was my right hand and arm that was affected and I am right handed, immediately I was cut off from a vast number of my normal activities.”
Adaptations were necessary in both my physical and emotional world. It helped to remember that I had certain pastimes and activities fade out of my life in the past. I had chosen those changes while these restrictions were forced upon me, but the end result was the same. It helped to realize that everyone had something they couldn’t do.
I also realized that I could no longer do everything that appealed to me. I had to choose. I was limited by lymphedema, something that seemed a handicap until I thought of it differently. My limitations meant that I had gained focus. Lymphedema had gifted me with this.
My left hand got pressed into service but it was inept and needed training. I garnered a few tips from material pertaining to amputees who were managing their world with one hand, but mostly I applied my own ideas.
Could I keep my house clean? I swept with my vacuum cleaner that I manipulated with my left arm. I learned new methods in the kitchen and I set aside fussy recipes. I managed. I told myself that my ‘job’ at the moment was to do everything I could to manage my lymphedema and to adjust to my new life.
Writing is the one thing that has endured as a source of comfort for me. Yet the physical act of writing was challenging. There were many components to this. Lymphedema and fine motor skills are not good partners, so my pen and paper method was not a good idea. It takes two hands, normally to type. But I would continue to write as this was an activity that I loved. I spent time each evening teaching my left hand to write, beginning with large figure eights and working my way to writing legibly and within the lines. I learned to type with one hand, to make notes with my non-dominant hand and to go at composing paragraphs in five minute segments when rest was necessary. It wasn’t pretty but writing is something that I would fight to keep in my life. I didn’t know what my writing would look like but still I chose to be as productive as possible with my writing.
I left hand operated my new camera as well. It was lightweight and I could hold it upside down for my left hand to push the shutter button. My camera was a new hobby’ one that helped me get more exercise and gave me an outlet for my creativity.
I found things that I could do and I found how I should think. I chose to be grateful that I had this life to live. I certainly gained optimism as I went along. It helped that I was making physical progress with the lymphedema condition, reducing the amount of fluids being retained with a combination of daily bandaging, weight loss and exercise. My weight loss efforts are described in the chapter – the Weight of the Weight. Why my excess weight aggravated my health will be explained as well.
“I chose to be as healthy as possible with my lifestyle- accepting the reality of lymphedema without grieving or become a victim.”