Looking At Asthma Through The Caregiver Lens
I have been thinking about asthma through the lens of others, recently. It was recently brought to my attention that "me" as the patient isn't always the easiest person to be around. Hmmm.. "What do you mean by that?" As a patient, my patient-life, sometimes takes over. Not only my life, but those that care for me. This had me thinking about looking at life through the caregiver-lens. I recently read a letter that an acquaintance had written out to her husband who lives with asthma and other associated conditions. It was really good and let me look through another perspective. What would it be like to be the caregiver for my own case? How can I show my gratitude and thank for everything they do? She hoped her husband would get well, not just because she wants the best for him but because she misses him and their life pre-chronic illness, which had been taken over completely by this new phase of their life. She hoped for her children to have all the experiences with them as family and not to be sitting idly by on the sidelines. She hoped and wished for different times.
A hope for a different life?
I can relate with wanting to have different life experiences from being in constant exacerbation or sudden changes in health, that stump even the best doctors. It is hard enough to digest these on my own, let alone, to know that my caregiver is also carrying the weight of these life events.
I think one of the reasons it is so difficult to look through the caregivers’ lens, is that, it hurts. I think when I look through my lens as a patient, I see living my life as healthy and vibrant. Not always the reality of someone that needs to take on the brunt of housework, or provide for you and your family because you have needed to take some time to heal or improve because you may not be well enough to do so. I know that I am deeply grateful for all the chauffeuring to appointments my caregivers do. They hold my hand when the news is not so positive and not only my dreams are dashed but so are there’s. I am sure there have been times when my caregivers have wanted to run for the hills screaming or have needed a break from my ‘especially high on prednisone and cranky as a grizzly bear’ self. When we sign up for life, "in sickness and health", everyone has their limits, I don't want to disappoint my caregivers or confess that we have to make new dreams or plans because the old ones are no longer viable, because of "me". I know they understand that love runs deeper than inhalers, steroids, appointments, investigational drugs, side effects, and disappointments. It is difficult to stand by that. I once overheard a conversation about this very things at a party. A caregiver who was exasperated but did not want to hurt the person they love by confessing that they were sad for the life that they would no longer get. After hearing that I vowed that I would be a more understanding patient, that I would let my caregiver grieve for a different life. Not only would it be therapeutic to them, it would be therapeutic for me.
Have you experienced this situation? How have you dealt with it?
Do you get muscle cramps caused by your asthma medicine?