I won’t say that I am healing really really rapidly since I know people go are going through TSW get breaks. However, I am doing really well! I still get tired very easily, but aside from that the itch is very mild. My skin is so much stronger it’s incredible. Even my arms, which is one of the more affected area, could be scratched without breaking. That said, on picture it may look worse because when I manage to break skin (which is becoming increasingly less frequent) I don’t ooze, I bleed. As a result, I have few scabs up and down my arm which looks more damaged than it is. I’ve been really taking advantage of this break time to hang out with friends, go out with the husband, rock climb with the sister, wear short sleeves, and go to Disneyland, courtesy of the husband’s cousin! And I had the best time, TSW or not, and manage to stay there from 10am till 7pm!
I went on all sorts of rides, both in Disneyland and California Adventure. I haven’t been on a roller coaster in years, and I forgot how amazing it felt! The adrenaline rush really kept me going, far past how long I would be able to last. I took pictures with Winnie and Eeyore and it was a blast!
Some tips if you suffer from TSW (or your friend/family) and you are planning an outing:
- Tell everyone. Husband’s mom, who came from Australia (!), and his cousins were all aware of my condition and didn’t have any trouble letting me rest when I needed to. This is huge because I definitely still feel some anxiety when going on outings and stress will definitely lead to more itches!
- Have an exit plan. My mom came along, in a separate car so that whenever I got tired, I would be able to go home. We arrived there at 10am, and I thought I would be able to last till 3pm (5 hrs on feet!). I lasted much longer, but that’s another bullet point. Others were planning on being there past 8pm, so having an exit plan will go a long way towards keeping the anxiety at bay. Be realistic about your energy. TSW is a serious illness and you shouldn’t expect too much from yourself – that will lead to a ruined day.
- If possible, go on a cold day. I think this varies from people to people a bit, but ever since I got sick, I definitely don’t get cold as easily. I think this is because I am constantly pretty inflamed and cold air feels really great on my skin. I know sun does great things as well (and I do sit outside when it is sunny) but for prolonged period of time, I think sunny and subsequently sweaty would have been traumatic for my skin. When I went, it was an overcast day with a little bit of rain on and off. In my opinion, this was perfect. That said, I live in Southern CA and my “cold” means 55-60F, nothing below freezing or anything. I’m sure below freezing has its own traumas.
- If going to a place with lines, minimize it. Thanks to our cousin, we had Fastpass that minimized standing in line. This was a life saver. When I stand in line for 60 minutes, there is a huge difference between 10 min standing /10 min seating and being on my feet for 60 minutes straight. Being able to go on rides quickly – the max line was about 15 minutes long- allowed me to last till 7pm. That was the longest I have been out since I got sick! 9 hours outside!! TSW-ers know how big a deal that is. So, if possible, try to get lots of mini rests.
- Be occupied/distracted. You definitely will scratch less if your mind is distracted. In terms of this theme parks are great! I know when I was too busy being enraptured by Winnie the Pooh (yes I am a grown woman, yes Winnie is still the best!) skin was the last thing in mind. Also, do not underestimate the power of adrenaline rush. I thought I was getting tired, and a roller coaster ride really picked me up. The rush does wear off though. That said, as said above, I’m doing very well. If I was still as bad as first few month, an outing would have been unthinkable.
- Dress in thin layers. I decided I was doing well enough to wear jeans. That was a mistake! Sometimes awkward places itch, and jeans were just way too thick to scratch above to feel better. In public, you can’t just stick your hands down your pants to relieve that itch, so wear thin layers that you can scratch above to do the trick. This will also help immensely in keeping your temperature at an optimum level. Also,
- Don’t be afraid to show some skin. Honestly, people aren’t judging you as much as you think they are – they are too busy doing whatever it is that they are doing and if they are judging you, they are ignorant assholes anyway. Because my arm and face is worse off, keeping the area cloth free really helped allowing the cool air to calm it down.
- If following a diet, pack lunch. I know a lot of people who follow specific diets. Don’t add to the stress of trying to find and buy a meal that will meet your standards. If following that diet works for you, don’t give it up just because you are out.
Tl;dr – Try to take as much precaution to be as comfortable as possible as anxiety/stress is your ultimate enemy and enjoy your time!
Don’t push yourself too hard, when you aren’t well enough you will be miserable. But push yourself a bit as you may be better off than you think you are and a bit of fun may just be what you need! You can see how much fun I had. Here’s to more fun days!