What really get to me is that if you look back through this blog to last year's posts, you will see that this time last year my skin was completely clear and normal, so to go backwards like this is heartbreaking. I spent a good chunk of yesterday crying and debating whether to just make a Faustian pact with the steroids and be done with this, even temporarily. And yes, I know that everyone will be telling me to hang in there because I've been off them so long and I don't want to undo my progress, but seriously, I have no quality of life right now.
I wonder if I will completely heal. I think that I have done too much damage. It seems very unlikely that my skin will ever completely return to normal. I read about people 7 and 8 years into withdrawals still suffering. Wow, just wow.
So here are my photos:
So here is the red face. Very red, very inflamed, burning and sore.
Hands are worst areas right now, with baggy, elephant skin. skin too big for my hand that feels like thick plastic.
Skin at the back of my legs was previously clear but is starting to crack and scab again.
So sorry everyone for being such a let-down. Wish I could be posting healed photos instead of this, but those are the breaks.
I probably won't be posting any pictures in August, because the kids are off school, so I'll try and post in September. I hope it will be something more positive.
Sorry again. I feel like I've let all my blog readers down.
16 comments:
I just stumbled upon your Blog when I was looking for TSW / Eczema support.
Currently my eczema covers 90% of my body. I've had this since birth but it only started getting really bad last year and I finally went off TS six months ago.
I went from a social butterfly/ outdoors lover to a hermit. From eating everything to only simple Veggies and fruits. My skin is weeping right now and I bought a mini-vacuum for my work desk to scoop up all the dry skin flakes piling around. Worse-- the past month I'm lucky to break more than 5 hours of sleep a night because my sleep scratching often wakes me up and keeps me awake.
I hate it all and it's causing me to be depressed.
But even though it seems my journey is just starting out, I'm hopeful. And I'm sure this isn't just naivete. Go see if an allergist can recommend something besides Steroid Cream. Sure it may make you feel better now, but think of how it'll be years from now. It's natural to have your skin thin with age... imagine your skin DOUBLY thin as an elderly.
Good luck on your own eczema journey.
Thanks for the kind comments. Are you on the Itsan forum too? It's a great resource.
Best wishes in your TSW journey and hope you feel better soon. X
Oh Louise, please don't lose your hope and belief. I get it, believe me, I really do. I look at my oozing weeping agonising skin and think, what on earth? How can this be me? But then I remember the last time I felt good and it had healed (Feb) and I KNOW that it can do it again. Why not? I truly believe that my body has reserves of healing energy that must not be suppressed but should be tapped into if possible. Steroid creams (nor, frankly, any other option offered by Western medicine) can never do this. I'm so sorry that your journey would seem to be longer and harder than other people's. There may be a reason for this that you have not yet discovered. But that doesn't mean you've reached a dead end. Having read your story, I am confident that you haven't, even if you have temporarily lost sight of your destination. I think of it a bit like the Lord of the Rings. It seems an impossible quest with the odds stacked against triumph - but yet it can be done by even the smallest person. Be gentle with yourself and trust that your body can pull this off. xxx
Oh Louise, please don't lose your hope and belief. I get it, believe me, I really do. I look at my oozing weeping agonising skin and think, what on earth? How can this be me? But then I remember the last time I felt good and it had healed (Feb) and I KNOW that it can do it again. Why not? I truly believe that my body has reserves of healing energy that must not be suppressed but should be tapped into if possible. Steroid creams (nor, frankly, any other option offered by Western medicine) can never do this. I'm so sorry that your journey would seem to be longer and harder than other people's. There may be a reason for this that you have not yet discovered. But that doesn't mean you've reached a dead end. Having read your story, I am confident that you haven't, even if you have temporarily lost sight of your destination. I think of it a bit like the Lord of the Rings. It seems an impossible quest with the odds stacked against triumph - but yet it can be done by even the smallest person. Be gentle with yourself and trust that your body can pull this off. xxx
Thanks Alice. Seems my blog readers are a lovely bunch. X
Sorry you're missing your holiday Louise and flaring...some people would give their eye teeth to already be 4 years into tsw - you and I are only 2/3 months apart. I'm flaring away too and on ciclo!
You are so not alone and we will most definately get to the end of this - hopefully soon. And hope this nonsense is noticeably shorter than previous flares and you can feel positive again that you're very close to the end of withdrawal. Keep comfortable and keep your eye on the prize xxx
Hiya Wendy, good to hear from you, even though I wish the circumstances could be better. I came out of the flare today and am now in the dry phase, which is way better. I was hoping to get some sun, as I've been sitting out 20 minutes a day in full sun, but today was rainy. Boo.
Trying coconut oil today, which is a new one for me, but it doesn't seem to touch the dryness. I have a couple of jars of Robertsons cream winging its way from Australia so I'm hoping that will help me over the hump too.
Best wishes,
Lou x
Oh it sucks Louise, wish you were feeling better too. Don't feel bad about updating though. I reckon I may be in it for the long haul too given my years of usage and damage. Last year you saw the possibility of such great healing, so at least we know the skin is capable of good things as well. For me, I think that I might end up having to manage the unpredictability of it the best way I can via what ever methods I can for some time to come(minus steroids of course).....but our bodies are pretty amazing so keep the faith, I know I have to. xx
Poor you, Louise. It seems to never end... D'you think your inhaler has prolonged things? I was going to suggest you tried antibiotics - I came of ciclo and my skin went nut - ears were terrible! I had over a month of antibiotics and things have been much better since... I realise more drugs probably sounds like a terrible idea. I have also been having phototherapy and have been in the sea and my previously scabbed up ankles are now ok. Will you not consider the tanning salon again? Pick a different one to last time. Or see whether you can go into one privately rather than on the NHS so that your time in it is monitored by a health professional. Or ask you GP! Good luck with the Australian skin balm. I have had some success with tallow balm, though it seems hard to get over here and I am going to 'render my own tallow' after I get back from hols (what a thought!)... take care. E.xx
Hi Elaine. I did a course of antibiotics at the end of May, but had no change in skin. I've been grabbing sun when I can, which has helped a bit. I would consider trying a salon again in autumn. I've heard good reports about red light therapy, so that may be another avenue. The Australian skin balm is helping a lot. It's very thick, almost Vaseline-like, which is what I need right now. It's helped my symptoms a lot. I'm hoping to post an update pic soon, but my son is hogging the PC with his mine craft game!
hi Lousie ! I am new to your blog and wanted to thank you for sharing your journey. I always left alone in my struggles with eczema so it's nice to known others understand what you're going through. I stopped using steriod creams about 2 years ago but had a couple of lapses this year - and totally regret it.. its been 3 months since I reset the clock and I decided to go completely cold turkey after using steroid creams for the past ten years. I learned of an acupuncture doctor who specializes in eczema, so that was the pushing factor. I had tried the natural route for year 2 years- bleach baths, honey, Dead Sea salt, everything i could find on the Internet -but it wasn't enough.... My skin burned of unstoppable itchiness at time and this was my last hope for a change. I have now been on treatment for one month now and already seeing improvement. The treatment is a combination of accupuncture, chinese tea, and a strict diet of not eating "hot" foods that can trigger irritation (fried foods, spicy, tropical fruits, garli, ginger, dairy). I courage you to look into it and you need something more like I did - also this soap called "defense" I got from Amazon (all natural oils) has also helped along calm my itchiness. I use pure unrefined shea butter as my lotion and that has kept my skin hydrated (worked better for my skin compared to coconut oil since it's thicker and stays on longer). Thank you for being a support to us all ! We are all hanging in there with you :)
Have just read an article about a drug in second phase trial from Yale it is normally used for Rhumaroid Arthritis Tofactinib please Google. I have used topical Steroids since 17yrs and now 75yrs old have been off them now for five months and having a really bad time.My back is Red raw and elephant skin on hands.Feeling generally very unwell
.I wish everyone good luck just hammer on and no to steroids.I feel genetic engineering will be the answer, Ann from UK
Hi Ann, yes, the NEA website says there are about 30 new eczemadrugs in th pipeline, which I think is really exciting and offers us some hope. I think as time goes on, medicine will move away from steroids as the mainstay treatment and move onto these more targeted drugs. Hopefully this will be sooner rather than later!
Your steroid usage must be huge given the years you were using them. I can only imagine how bad your withdrawal symptoms must be. You have my utmost empathy and best wishes as we travel this itchy road together. X
A big hug to you, Louise. I hope you're feeling a bit better and find some relief with the trial ointment.
Rosemarie
Hi Louise, it's Ruby Red here. I am so sorry you are in struggle town again. me too. Have been for 5 months now. My partner was asking about ooze tonight so we came on here to read an old post of yours and ended up reading lots of it together.
Thank you for continuing to blog. I honestly don't know how to post in this condition, so late in the game. So I just avoid it. So many of us are like that. Just want to give people the good news. So I appreciate your continua updating and honesty.
I hope you recover from this flare quickly .
Love Ruby Red xx
Hi ruby.
I'm doing well right now, I just got back from holidays and went swimming and had a great time.
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