Ichthyosis awareness: Accepting My Limits – a guest post from Hunter Steinitz.

I’ve admired Hunter for years – shes a star. She is a great role model in the Ichthyosis community – she loves life to the full, and has become a good friend (as has her Dad, Mark). Mark shared their story here in 2014. Hunter has Harlequin Ichthyosis. She recently spent a semester studying in London – I loved seeing her travel photos. She asked me if she could publish a series of guest posts on my blog – of course I said yes! Her first post is about her travels. Travel is definitely tricky for people who have Ichthyosis, but it’s not impossible. As Hunter writes, a little rest makes for a better trip.

“Last month, I returned after spending a semester studying abroad in London, England. It was a great and rewarding experience! I got to see a lot of theater, visit some beautiful old churches and sample some great European cuisine! This trip also taught me a lot about my limits.

Before I departed, I was thinking about where all I would go, the adventures I would have and all the people I would meet. I was also a bit scared. I was about to leave my family and most of my friends behind to live in a foreign country for three and a half months. I was worried about being able to adjust to new routines and keep up with my peers. Because of my condition, I find it difficult to be on my feet a lot and I move slower than some of my peers. I was concerned that I would be left behind.

Once I got there, some of my worries were realized. I left some events and adventures early because I had a long commute home and I was already exhausted before I left. I heard about adventures that my friends had had after the fact because I wasn’t there. I got winded and sore trying to keep up with them. There were a number of nights that I spent in my flat because by the time I got out to meet up with my friends, it would be time to turn around and go home again. My friends tried to wait for me and after I spoke with them, they adapted our travel patterns to accommodate my pace but I felt like I was holding them back. It was hard.

But that time was necessary. I needed to be face to face with my body and I needed to accept that I need to take time to rest and feel my best. I learned that I can’t make the best of an adventure if I am working so hard to keep up. I can’t enjoy an experience if I am in too much pain to focus on anything but taking the next step. I learned that I need to take a little time to take care of my needs and allow myself to feel my best so that I can come out swinging and make the most of my experience.

As a result of reaching this realization, I altered my routines to allow for more rest time. It was the best decision I could have made. I was fully present for far more and enjoyed far more once I accepted that I’m not Superwoman. I do have limits and its okay to admit them.”