The 21st marked two months since I had surgery for Hidradenitis supprativa. It’s been hard.

To be transparent, I don’t know the last day I haven’t cried. Surgery recovery is hard, and this one in particular has felt like too much sometimes. I got the surgery to help alleviate the pain and pressure associated with the disease. For the past few weeks, I’ve still been in pain. I forgot to take into account the disease in other areas and how that would present post surgery.

This surgery recovery has been emotional. Two months of gauze coming in and out of my butt twice a day has been mentally taxing, painful half the time, and uncomfortable. Not feeling comfortable sitting, feeling physically (and emotionally) weak, and running out of things to do to occupy my time is making me restless. It doesn’t help that I have anxiety and it’s harder when I’m on my period.

My incisions are healing fine for the most part. I’ve had some infections, but the wounds are improving overall. One of them is almost completely healed. And still I can’t help but wonder when I will shower or use the restroom comfortably. When my wounds will heal and I can do things outside of the house and be more present with my daughter. When I will feel like myself again.

See one of my problems is that, right now, I’m not the type of person that likes to go through the journey. Could be my anxiety, my fear of the unknown, my disdain for routine, or that I’m a Sagittarius, but I like to go from the beginning to the end and skip the fluff. Could be the undiagnosed neurodivergence, but I have a hard time with consistency, am impatient, and lean into instant gratification.

I know that a little step every day adds up in a big way later down the road, but it’s hard for me to put that into practice, especially now. No matter how many times I or my family remind myself of this fact, I have trouble recognizing small wins as progress. Sometimes, I have trouble taking the first step or I give up after a while because I can’t see where the road ends. This fact of mine is my “tragic flaw,” a trait that can lead me to missing out on great opportunities.

It’s a pattern that continues to show up in my life, and now I feel like this surgery is reminding me again that things take time. A little step forward is a step forward. Consistency shows results and a little progress is still progress.

The hardest thing about the surgery recovery isn’t even necessarily the incisions and wound changes, which are getting annoying. It’s that my HS is still present in other areas and is actively flaring with a vengeance. The pressure from the disease I no longer feel in my butt, I now feel in the other areas. I have a huge hole in one of my arms from a flare I got about a month ago that my dermatologist needs surgery to heal. My other HS spots are painful to the touch. It wasn’t this bad before the surgery.

It’s been incredibly hard and painful for me to walk and move which makes my mental health worse. I feel like the pain from the disease will continue to be the case until I do the next surgeries to cut them out. At times, my flare ups have made lying on my stomach to get changed painful. It means I’m doing frequent disease keep up by applying bandaids along with the surgery wound changes.

It feels like my life is enwrapped in this disease right now, and it’s been hard to get away from it and stay mentally positive and emotionally sane. I have huge waves of sadness and crying fits. And I’m hurting. And this has really sucked. And I’m trying to get back into not feeling shitty.

And now that I think about it, my fatal flaw could be due to my perfectionism too. Because journeys are meant to have ups and downs, stops, detours, and all that. So, if I’m taking five steps forward and three steps back, my perfectionism (anxiety) makes me think I’ve failed or done something wrong, even though technically I’m still moving foward.

So, how am I coping? I’m being honest about and feeling my feelings. I’m crying my eyes out. I managed to finish reading a book. I’m writing this. I’m finding ways to manage pain and spending some time with my immediate family. I know I won’t feel like this forever, and some days will be better than others, but I’m tired. I want to be healed and for this disease to settle down. I want to get back into reading and leave this transitional period.

If you’re looking at surgery for HS and have multiple areas that are affected, I would recommend thinking big picture about it. I wish I got my underarms done first because it’s hard to navigate my body with the pain under my arms and not being able to sit flat on my butt.

I’m overwhelmed and I’m over this, but I’m getting through it every day and am trying my best to keep my head above water. I can get through this and I’ll be so grateful when I do. I’m more than this disease and more than what I’m going through right now. And I have to have hope it’ll get easier and better.