Hellobee

I have a laundry list of chronic illness conditions, which I regularly write about here as a voice for chronic illness parents. Since I wrote the post about my conditions, I have found out I likely have another, gastroparesis, which is a partial stomach paralysis/delayed stomach emptying that impacts my digestion, causing a lot of pain, nausea, and vomiting.

With all of my conditions in mind, I thought it might be helpful to write a post on what I do in the daily management of my chronic illnesses. This tends to change day to day, as different illnesses flare up at different times, but it helps to have these multiple strategies in my toolbox to handle what my body throws at me. I also sometimes add new strategies, to try and see if they will help, and cull out the things that aren’t helping. It’s a constant learning curve!

My disclaimer on this post is that chronic illnesses are so diverse, especially when you have a bunch of them all stacked on top of each other. What helps me with condition x might hurt you with the same condition. Many of these strategies were implemented with coordination of my medical team, and none of this should be taken as medical advice: it’s just a snapshot into what works for me.

Medication: My medical team has tried a number of medications, most of it which didn’t work particularly well. I am still on a few medications which are helpful: a sleep medication, a nerve medication which helps with pain, and medications for nausea and vomiting. I also take antacids and Benadryl as needed.

OTC Treatments: I use Biofreeze sometimes on sore joints. I also use a Coal Tar shampoo for my psoriasis.

Braces and mobility aids: I have a drawer full of fabric braces that I use when necessary to stabilize unstable/painful hypermobile joints. I also have a wheelchair that I use as necessary. I don’t tend to use it in my day to day life, since my conditions don’t yet require that, but I do on long family trips, like to the zoo. If I ever take Snowy to the zoo by myself and therefore can’t bring my wheelchair, we will take it much easier and probably only go to one or two sections of the zoo.

Me using my wheelchair at the Zoo Lights, one of my coping strategies. 

Therapy/counseling: Therapy has been hugely helpful for me to work toward pain acceptance and the guilt that comes with my condition. I found a certified counselor online so I could work counseling around my schedule and not worry about my body’s ability to add extra commitments in getting to physical appointments.

Support groups: One of the most helpful tools for me has been finding small online communities of people who are also chronically ill. I have made many close friends through this. My spouse, family, and non-ill friends are wonderful, but there are just some things you don’t truly “get” unless you’re living it, which is why it is so helpful for me to have my chronic illness circles.

Diet: This is the area I’m struggling the most with, and that I’m constantly tweaking, especially with my diagnosis of gastroparesis which requires a low-fat, low-fiber diet for management. A lot of the foods I thought were healthy, helpful, and anti-inflammatory for my body, like beans, actually ended up being terrible for it. I am slowly learning my “safe foods,” which I can eat during a flare.

Rest: I have learned that rest is essential to manage my conditions. I sometimes need a whole day of minimum activity, and I am thankful to have family that allows that to happen. I’ve learned to do a lot of parenting from bed: we do manicures, we play together, we watch movies together, etc., all while I’m laying down.

Hot baths: I take at least one, often multiple, long hot baths a day. This really helps my joints and pain.

Coping Strategies: Along the way, I’ve figured out little strategies to maneuver about the world with illness. This includes always using the elevator when I’m going up to my third floor office, and always knowing where the closest or most private bathroom is.

So those are the strategies I’m currently using to manage my conditions. If you struggle with any chronic illness condition, what is the top strategy you use to manage yours?