Caregiving and Coping With HS Pain

I had just moved into my latest apartment a few months prior when I noticed a little dark-haired lady waving at me. She said, "Hello, I haven't seen you before." I smiled and waved back. To be honest, it wasn't in my plan to be too friendly. My apartment manager had warned me that I was going to be situated in the cluster of apartments where the older residents tended to gossip like a bunch of hens.

My other usual habit was to not get too attached to neighbors, as I tend to move a lot. On top of that, I'm now dealing with truly being disabled. I had waited a long time to get into an apartment like this because this was an actual accessible unit with a walk-in shower, lowered counters, lever handles, wide doors that could accommodate a wheelchair, and controlled rent. But here was this neighbor waving at me.

I introduced myself and she told me her name. Then she said we should exchange numbers. Whoa! What? That wasn't in my plan either. Exchanging numbers means that someone in very close proximity can call me. But I have this people-pleasing side of me that can't say no, not always. So, fine - this lady got my number. I warned her that I don't always feel good. My neighbor was a complete stranger, and I didn't feel comfortable explaining the symptoms of hidradenitis suppurativa or why it's painful for me to walk sometimes because of the location of my lesions.

Taking on the role as a caregiver

Once my neighbor had my number, she wasn't shy about using it. She would call to ask if I could fix a vertical blind that fell out of the clasp. She would ask me to smell her milk to see if it went bad. Sometimes she would ask if I was watching a basketball game. And then I would get messages telling me good night and sweet dreams. The saddest messages I would get were the ones asking me if I had food.

Now, I love to bake and cook from scratch, so of course I always keep certain staples on my shelves if I can help it. I really love to cook for others.

My neighbor is a little feisty and rebellious, so she didn't tell me right away that she is diabetic and she previously had a stroke. Sometimes, as an HS patient, I ended up having to eat like people with diabetes in order to control our blood sugar and inflammation, so it's beneficial to make dishes geared toward my neighbor's needs and pretend I'm focused on her. Then I can trick myself into thinking that I don't really want that chocolate croissant.

Balancing caregiving and chronic pain

This caretaking-neighbor-friend relationship has evolved into much more than I anticipated. Today, I typed up a paper for my neighbor to keep on her refrigerator that lists all of her medications, surgeries, and hospitalizations, so that medical staff and I can keep track of everything without any gaps. This also helps if any emergency personnel have to be called.

I also accompany her to almost all appointments so that I can be her "ears," and keep track of any advice from doctors, as well as any changes. My neighbor was pretty mad at me because I arrived with a list of food restrictions, but that is specifically an attempt to avoid catastrophic and irreversible damage to her kidneys.

This sort of caregiver involvement does take a toll on me as a chronic illness and hidradenitis suppurativa patient. As much as I want to assist my neighbor and make sure she has positive interactions with her doctors and medical staff, there are times when it's nearly impossible for me to get out of bed. Sometimes she will ask me to "shower sit" with her, which to her actually means assist her with bathing. I have to tell her that she has to call on someone else to help because my own issues prevent me from helping on that particular day.

I try to give her as much warning as possible that I'm getting fatigued, or something is causing me too much pain. There are times when I can't be around her or anyone else, and I have to take a few days and be by myself. So far, I have been able to communicate that I need some time to recover so I can keep helping her.

The emotional toll of being a caregiver

Being a caregiver for someone else does take an emotional toll, too. I have to put my emotions aside at times and focus completely on her physical and emotional needs. If she is having a difficult time, I can't throw my hands up and walk out.

I have to look for another way around the problem and help her through so she doesn't give into anger or depression. We also run into formidable barriers with her family, as they are resistant to an outsider helping.

Finding the bright side

The most difficult part of caregiving is trying to find resources. No matter where you are located, it's all about knowing where to look, and who you know. I happen to belong to a robust online community of disabled folks who know a lot about being disabled. Every state and country has its own unique challenges. The state where I live now has very little money set aside for disability, and we are constantly facing more budget cuts.

My neighbor and I have had some fun too, and we have enjoyed getting to know each other – as reluctant as I was to make a new friend! She is a Navajo lady who grew up on a reservation in northern New Mexico. Little by little, I'm learning about her life. I, in turn, tell her some stories about my adventures – including the years that I lived in New Mexico as well.

To make up for taking away some of her favorite salty foods, I'm giving her a brand new dress in the softest fabric that I hope will be easy for her to put on and wear. And maybe we will both take a nap and do this all over again.