It hardly feels fair to detail The adventures of Sunny and Sam without letting Sam tell his side of the story. So, we’re going to work on a series of posts where he can talk about his own experiences.
For those of you who haven’t started at the beginning, Sam and I weren’t married for very long before the car accident that changed our lives forever. In fact, our “do it next year” honeymoon turned into a permanently-on hold-honeymoon once the health crisis was in full swing.
Sam does better writing with prompts, so we’re going to do this interview-style.
What do you wish that somebody had told you before you started this whole health journey with Sunny?
There isn’t anything that I can think of. Knowing more about her conditions, earlier, probably wouldn’t change anything.
Also — don’t bring home the wrong french fries 😂 Kidding, but I was not prepared for how difficult the steroids would be. Little situations might randomly be emotional. Sunny is not usually the kind of person to cry over French fries, but with steroids her moods could shift quickly and in unpredictable ways.
How has the health situation changed your relationship?
I took on more responsibilities, especially physical or stressful chores. Also, I became the sole driver in the house.
We were always “homey” people but now we spend even more time inside together. We don’t go out to eat as much.
What is most difficult for you?
There are times when the only thing I can do is wait. For example, when she has pain and has to lay down and wait for it to go away. Or when we go to the E.R. I try to make Sunny as comfortable as possible, but still I can’t make pain and other symptoms go away.
What has surprised you the most about your situation?
How little doctors know. For example there was a doctor who was careless and injured Sunny’s head. Not every doctor is interested in learning about rare diseases. Also, I was surprised by how slow medicine is. It took almost 2 years and so many doctors to get some kind of treatment. Not even a diagnosis!
What advice do you have for other people with chronically ill partners?
Be patient, keep up hope. Find moments to laugh together.
What frustrates you about being a caregiver?
Cleaning the dishes. Kidding! Sunny takes care of herself, takes her medications, schedules appointments, follows up with the doctors. What frustrates me is not being able to do more in a medical way per se. I don’t know much about medicine. When Sunny isn’t feeling great, I don’t have the medical knowledge to help treat her at home.
Is there anything that you enjoy about being a caregiver?
I enjoy spending time with Sunny. She is smart, strong, and an independent woman. She does take care of herself.
What kind of help would you accept if it were available?
Mostly help with chores and repetitive things: cooking, laundry, cleaning, documentation. Between work and home, I get tired and lose focus on repetitive tasks.
Anything else you want people to know about your experience?
Listen to and learn to know your partner. I’ve noticed that sometimes people don’t want to believe their partner’s illness is a real problem. Doctors, partners, not listening to the patient means bad choices. Sometimes partners don’t want to deal with the inconveniences of the disease and stay in denial and ignore. Or they are preoccupied with their own problems. In a relationship this is bad. If your partner is suffering and you are ignoring them, it’s bad for your partner physically and emotionally. It can make them even more sick.