Here is today's photo:
I can't even begin to describe what this setback is doing to me emotionally. I can usually get on with my daily routine, but I got my husband to take the kids to school this morning because I was worried about the cold wind stinging my skin. I don't want to go out. I just want to stay at home and not face anyone.
I went out last night and a well meaning friend commented on the state of my skin and how bad it looked. Of course, she did the usual thing and recommended a cream that would "cure me". I didn't even have the energy to say no, even though my brain was screaming "No!!!! This isn't eczema! This is steroid withdrawal! No cream is going to cure it! It just needs time!!!!", but instead I sheepishly thanked her for her offer of yet another tube of useless cream to add to my pile of other tubes of useless cream. People mean well, but stuff like that really upsets me.
I hate it when people comment on my skin (unless it is a compliment!). Comments like "oooh, your skin looks bad today", don't really do anything to boost my self esteem, especially if I didn't think I looked particularly bad.
The knock on effect from this incident is that now I am feeling really low and want to shut myself away until my skin looks better. It's not going to happen, as I have to fetch the kids later and go to my son's parents evening tomorrow and face his teachers! I have no place to hide!
I re-read Dr Rapaports article about his case studies of people with steroid addiction. Anyone going through this should read this article. He states that most cases of TSW last between 2 months and 2.5 years. I presume the 2 month cases are people who only used steroids for a week. I don't know of anyone cured in 2 months. I am at the point where I am thinking the 2.5 years may be a closer estimate as to what i should expect, in which case I have to put up with another 1.5 years of this hell.
Oh joy.
3 comments:
I'm so sorry Louise. Please hang in there and try to stay positive. Like all flares, this too shall pass. Every flare brings you one flare closer to being healed!
Unlike you, I was unable to keep going without treatment. I became very ill and morbidly depressed after 8 weeks without steroids. I was put back on steroids (oral and topical), and have slowly been weaned off of them again over the last two months. I am now less than a week away from being totally steroid free again. As the dose of my meds diminishes over time my skin has become increasingly reactive to the environment again. I am much better now than I was before, but I have to be super vigilant with keeping my skin well moisturised and treating small problem areas before they mushroom out of control. At the moment my face is a bit red and flaky too, but is at least calming down. My scalp has become very flaky and I have to keep brushing my shoulders off to ensure that nobody noticed the skin flakes collecting on there.
If my treatment regime ends up working I will document it thoroughly and share my experience with the red skin and eczema communities. If it doesn't... then it will be back to the drawing board!
Best of luck!
Johan
Hi johan, thanks for the comments.
I hope your steroid free journey runs smoothly. The first few months are really hard, so prepare yourself and make sure you get lots of rest during this time.
We are a flaky lot of people to be sure. Just wear pale t shirts to hide the flakes!
Wishing you well. Please keep in touch and keep me up to date on your progress. If you start a blog, it is a good way to see improvements in the skin.
Thanks again. X
Lou,
Just remember that this will pass. It will neither be as long, or hopefully as vicious as the earlier flares (although when you are in it, they feel and look awful). It WILL pass.
Thinking of you x
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