It’s been about 18 months since I started the treatment for HS and about 6 months since I took the last pill. I had my last surgery at the end of July. So far I have had only one or two very small outbreaks. This has been a huge change for me. There are some days when I can’t remember the pain. It is still quite unreal to me to wake up in the morning and get dressed in whatever I want. For so many years I had to dress according to where I had lumps and how much pain I was in. Sometimes I will put something on and immediately expect to feel the effects. It still surprises me.
Of course it has not gone without some negatives. I still have scars. They are neater and obviously surgical but they are there. Honestly, it is a price I am willing to pay for what I have now. One section of the scar is pulling and is very tight but not painful at all. It might look a little funny but another price I am willing to pay. Gladly. I don’t have all the feeling back in the skin. It is quite a strange feeling. Shaving gets quite interesting and I tend to do it in the mirror now just to make sure.
On the other hand my body doesn’t feel like my own. My body is acting all wierd and strange and very foreign to me. After a year of uncomfortable and painful joints and muscles I feel so stiff even now. I don’t have the aches I had while on medication but my body feels stiff. After a year of avoiding the sun like the plague I now know don’t like the sun very much at all. All in all my body is doing wierd stuff and I am not sure how to handle it. It does not feel like my body. Before I went on medication I had started doing pilates. I have not done exercise for a little under 18 months. Today I went walking for 30 minutes. Fast.
In other news. Change is constant. A couple of months ago my vision for the future was crazy. Life changing, dreams coming true crazy. It felt like I was on the verge of something big and bright. In a heartbeat everything changed. Now I feel like I am on the verge of nothing. The future is so unknown. I don’t always know how I feel about it. I think I am coping but most days I don’t want to be coping. I want to be mad or sad or crazy but I don’t want to be coping. Ok that is a lie. I am sad. Very sad but still coping. I think about what would’ve been and could’ve been and I get flooded by so many different emotions.
So besides it feeling like my body has deserted me it also feels like I am losing my mind. I don’t like the sound of that. Today I started doing something to make my body feel better. Hopefully soon it will feel like mine again. Slowly but surely I am going to work on my mind too. I am going to make decisions that are right for me. Somehow I need to change the view from this verge that I am standing on because make no mistake, I am standing on one.