Hi, long time no post.
Firstly apologies for the lack of updates! I just realised that I have not posted anything for the past 1.5 years. When I was deep in the throes of TSW, I remember clearly how reliant I was on the blog posts of others as a means of reassuring myself that I wasn’t alone. Yet here I am not having provided the same form of comfort I once so eagerly craved. Sorry!
Where do I start?
Skin has been good. Not fantastic. Not 100%. But pretty good.
There are various ways that others use to gauge how good their skin is: the length of time since the last flare, the intensity of the flare, level of discomfort etc. For me, one of the ways I like to use to measure how good my skin has been is the amount of time I have dedicated to thinking about my skin and how much my skin has affected my daily life. For clarity, I am only talking about my facial skin and my scalp now because other areas have not provided me with any issues at all over the last year.
Right at the start of this journey, I would say that my skin and its condition dictated around 80-90% of my daily activity. This slowly (and if the bold font isn’t clear enough, I do mean slowly haha) dropped to around the 5% mark as of today. This is to be expected given that it has now been 3 years and 1 month since I embarked on TSW.
I remember that when it first started, showers were an absolute nightmare and I very much dreaded having one because of the way my skin would split open once finished. Showers are now a normal activity and I don’t have to think twice about the aftereffects. I used to avoid catching up with friends because I hated the thought of them seeing myself in that state. Or even if I were to arrange a coffee, I would try to align it with the good phase of my skin. I now don’t give a second thought to arranging activities with friends. In other words, I can freely plan events ahead of time without having to fret about the possibility of a flare.
However there is still that 5% as mentioned above which is centred around my facial skin. Given where my skin has been, this 5% really consists of trivial discomforts but it includes things like eyebrow hair that has not completely grown back, thinner hair on areas of my scalp that I used to scratch quite viciously and the occasional itch (especially when the weather turns hots). Another thing that has been bugging me as well is a raised area above both of my eyebrows that is causing wrinkles to appear on my forehead. I’m not sure if this is a residue of all the scratching on that area but both sides are more raised than normal. My suspicion is that it is still slightly inflamed however it has been a long period of time and other areas of my body aren’t inflamed so am not entirely sure what the cause is.
In saying this, my skin did flare two times over 2016. The first time was in February and it lasted until April. The second occasion was in June/July and it likewise lasted for around 2 months. The first flare was a typical flare for me which involved patches around my eyes weeping (albeit smaller and less intense), really flaky scalp, and sensitive patches around other parts of the face. I’m certain that this flare was stress induced because it started at the same time when I first started work. It was a period of adjustment for me and I was conscious of the stress I was feeling. However the second flare must have just been a normal cycle as I cannot attribute it to anything else. When I say that it was subdued, I mean that I could feel my skin getting more sensitive and flaking at times but yet there were no open weeping wounds.
Other than that, skin has been great and I truly can’t complain. I sometimes still like to rub my face and feel how smooth it is! I would like to say that it is as smooth as a baby’s bum but that would not be doing justice to my skin…..Sorry. Bad joke.
Reflecting back on the past year, it is truly amazing to think of the things that I was able to do without worrying about the repercussions. Things like going for a run and drinking alcohol, all the way to washing my face with water. Really simple things that many take for granted. I must remind myself to not do the same.
Last update skin wise would have to be the fact that I have been seeing a dermatologist. This alone is filled with so much irony because I firmly believe that it was a dermatologist’s negligence who got me addicted to steroids in the first place. But at the persistence of my family, I obliged. Suffice to say that this dermatologist is willing to acknowledge that TSW exists and is understanding to my concerns about using any further steroids. In fact, she recently went to Japan for a conference which touched on this issue and what solutions dermatologists in Japan were using to treat the over-use of topical steroids. But her patience has a limit and I do worry that my attitude and stubbornness is stretching that limit. Despite that I will continue to see her, if anything to prove to her that my underlying eczema can naturally get better with time and that steroids are not a longterm solution. It will be interesting to see what she will have to say for the upcoming consultations.
With that out of the way, I wonder whether I will continue to update this blog going forward. My rationale behind this is that I don’t believe I am going through TSW anymore or that even if I am going through it, the effect is so minimal that I will not have much to update. If and when anything significant occurs, I will come back and provide readers with an update. But I really hope that there will not be a reason for that.
If anyone has any questions about my experiences or just needs to have a chat, please leave a comment and I will try to respond to it in a timely manner! I understand how crucial a listening ear can be through this period and I will attempt to check back on a regular basis.
On that note, I’ll leave you with a few pictures of myself over the past year. I have chosen photos that aren’t exactly flattering but provide a picture of what my facial skin has been like. So please excuse some of the bad photos or backgrounds haha.
Like many who have gone through this experience, my experience has shown that it can and does get better. Hang in there.