Hello Stranger (ver 2)

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!

Skin update

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.

Closure

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.

 

Hello Stranger

Well hello haha. Writing something out here feels somewhat like meeting a friend long forgotten about until one certain day when you happen to bump into them.

This must be the end of month 20 by now? But at this stage, who’s really counting?

By the lengthy period of absence, someone could reasonably induce that the lack of updates must signify a lack of things to update about. And by and large, that would be a fair conclusion. Within the last 6 months of so, my skin has been relatively stable such that even when it flared it did not stop me in my tracks. Skin was its best sometime around early March which continued into April where it went downhill for the month of May (neither the humidity nor the unhealthy food in Singapore had much of an effect on the skin). At its worst, this meant noticeable itch around the same troublesome spots, and the reddening of the face. To my surprise and delight, the face did not ooze much, if any, during this flare. I took this as a really encouraging sign as, in my view, it heralds in another stage in healing; flaring without oozing.

I have come to the realisation that TSW has been and will be a much longer ride than expected. Looking back, I remember anticipating the 1 year mark as I took it to signify either the end, or at least the very final stages, of TSW. However that has not turned out to be case as TSW stretched itself into the 1.5 year mark with no clear finish line. If I’m to be truthfully honest, I would say that TSW would stretch itself out into the 2+ year period until I will be finally done with it. And by that I mean completely without symptoms such as itch, redness of the face, cysts whatnot. In saying that, i feel that I have passed a threshold where I can claim that TSW and its symptoms do not affect the decisions in my daily life. I eat like a normal person (with limits of course. Still try to stay away from too much alcohol or pre-packaged food), sleep according to my timing, shower in really hot water when the weather warrants it (some part of New Zealand just reached -20 centigrade last night brrr) and am able to plan for the future. This has most definitely been the case in the last 6 months of so and I don’t envisage it changing. Thus the fact that I flared without oozing was important to me because based on a roughly uphill trajectory, flaring in the future will be much more comfortable.

I feel like there’s a lot more I could share but am finding it difficult to find any coherent structure to share it in so I guess I will end with this: I’m not done with TSW nor is it done with me. But I feel like I have largely got my life back from the monster that has stolen it and I hope to be able to make up for lost time.

If you have any questions or want to know more about what I’ve been through, feel free to drop a comment or read through my previous pasts as despite the lack of detail, they are depictive of my story and journey through TSW. Hoping the best for all those going through it right now!

In the absence

So first off, I’d like to apologise for the long hiatus. I had always intended to provide at least a monthly update as a way of both informing future TSW fighters out there what my journey was like, and as a means of providing a diary for myself. I’m not too sure where the past three months or so passed by; it just happened so quick. So I guess it’s time for a skin update:

Within the past three months, I experienced another flare around the month 11 mark. It crept up on me very slowly such that only hindsight was able to show me the warning symptoms. It started off with the little signs such as an increase in itchiness on my ears and an increase of symptoms on my index finger. From there, it blossomed into a full flare albeit much more manageable than the preceding ones. Although I experienced the typical symptoms (ooze on face, itchiness across most of my still troublesome areas) I for one didn’t have a bloated face which I was thankful for. This meant that even if the symptoms were more prominent on my face, I was still able to have the courage to face the world once the day progressed (the symptoms on my face usually subside in their aggressiveness by the afternoon if I leave it alone after my morning wash up).

The same trouble spots still remain. Largely this is to mean my face, a few fingers on my right hand (primarily my index and middle finger), scalp, neck and upper body. My upper body is still in the same condition that it was a few months ago. The flare only really affected the parts of my body from my shoulder upwards.

So in summary, although I did experience another flare, it was liveable and I still went about my activities as per ‘normal’; or at least as normal as I have been able to. Good promising sign? I do hope so.

That said I have finally crossed the 1 year mark! Despite having crossed such a big milestone, I feel that the occasion was buried beneath my flare and exams that I was sitting at the time; I didn’t quite feel the euphoria that I had imagined. If I’m honest, I would also add that I was a bit disappointed to still be at my current situation with my skin at this milestone. I really had imagined that by this time of the journey, I’d be able to look back and be thankful that I am clear of any symptoms; be thankful that it’s all over. However reality often has a way of dashing the dreams conjured up in our state of hope.

In contrast, I am still thankful for how far I’ve come. I can still remember the feeling of being wet and sticky all over whilst lying in bed. The constant smell that oozed out from the wounds all over my body and how the ooze used to feel when it was all dried up in my hands. And that insatiable itch.

Even despite the symptoms I still have now, I am able to sleep well throughout the night. I am able to dress in clothes without having to worry about the ooze. I am able to have a shower without dreading the inevitable open wounds that would result.

I recently made a comment to my mum to the effect that there are so many small (and large) aspects of what I’ve been through this year that it’d be hard to list each and every single one. And I guess that that’s part of the journey in this TSW recovery. That over time, many of them will disappear until one day the list will be clear. I’m still looking forward and eagerly waiting for that day. Until that day, I will still try and live out my life as much as possible.

Next milestone – 2 year mark! Haha I feel a bit greedy having just crossed that one year mark but we all have to have something to look forward to right?

Hope everyone is getting better slowly but surely.