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Wednesday, 16 April 2014

Some Relief Week 8-11

Over the last 3 weeks I have finally started to get some straight hours of sleep, which I have been so in need of, albeit with the aid of sleeping tablets out of desperation.  This has made a difference to my skin and my sanity, as months of no to little sleep does zilch for aiding in any measure of healing. This seems to happen with 2 steps forward and 1 step back though, as I still have nights like last night with being awake itching and trying to stop myself from itching from 2am to 6am which undoes some of that longed for reparation and rest...grrrrrrrrr. 
I have been sticking to the elimination diet prescribed by my naturopath and have been working on building up good gut flora for my tummy.  The parasite that has taken up residence in there is not doing me any favours but if I can build up some good flora first we can work out a way to knock it on the head with a bit of luck.
Have been doing some reading about homemade meat bone stock being very good for helping the gut and skin amongst other things, so hope to be able to trial this soon.  Has anyone else tried this and found they benefited?
My skin is still  very fragile, sore and breaks easily but the inflammation and swelling has settled somewhat.  I still have mad itching but the gaps in between the itching have gotten longer over the last 3 weeks. The settling of the inflammation means that the severe pain level that I was experiencing from head to toe has decreased and I can move about  a bit more freely now without feeling like I am being slashed by razor blades every second.
This has pretty well been the first week that I have been out of the house other than to attend appointments since early February. I was able to take my daughter for a couple of driving lessons, 2 hours seems to be the maximum time at the moment before itching takes off.  Lets face it this is much better than 2 minutes!!
I hope everyone else out there in red skin land is hanging in and staying strong.  It is because of you and your steadfast determination that I have been able to maintain strength, through what has been a totally overwhelming time with pain levels and extreme sleep deprivation (not a good combo).  The minute by minute experience of feeling completely unwelcome in your on body is not one I would wish on anybody.
Topical steroids were definitely no working alternative though and I just hope that within the coming years there is much more acknowledgement within the general medical profession about the extreme havoc they can cause for the body, instead of aiming for the 'quick fix'.
Am off to the my hypnotherapist appointment now, not sure if it's helping yet but it can't hurt.

At the moment, points for most improvement go to my face, started off in February(see earlier post) using Dermeze on it which is a paraffin based, vaseliney textured greasy muck, but couldn't tolerate anything else at the beginning, moved on to Robertson's (codliver oil based) Skin Repair Ointment which really helped when I was sore and crusty and now, for the last few days have been using pure jojoba oil.

Much improvement
Skin is still very fragile but holding together!!

Hands have improved but still gnarly, swollen and the skin breaks easily 

Swelling has improved but cracking and bleeding has started on the remainder of foot on edges and underneath, ouch.
All over is a bit like this, skin trying to knit itself back together.

Completely crusted throughout my scalp, doesn't help much with the dust mites when in bed, and I think it is why my eyes feel sore and red a lot because it just falls straight into them and everything else. Fortunately I am not cooking for anyone else at the moment.

Neck still tender and quick to itch.

Oedema much improved.

I can actually get my thongs on now, and yes that is my skin all over the floor.


  1. Just looked back over your history.... Whoosh what a flare you had! I didn't go that full body, but my face is all sorts of messed up at the moment. Very encouraged by your current progress!

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  3. Hi Jen Joy,
    I'm glad you are encouraged.
    I am some days and others not so much but that's how it seems to go. The overall bodily discomfort is hard to get used to but when I look back over the last months things are definitely more bearable at the moment by comparison.
    Good luck with your progress as well and I have added you to my bloglist.
    Take care,
    Caroline xx

  4. Wow, looking good! You're looking a lot calmer and skin is a lot less angry now. I hope things continue to improve as they have done. You've been through such a lot! Hiya Jen Joy, that reminds me I must add you to my bloglist too - I hope you are coping ok! Louise xx

  5. Thanks Louise,
    Yes, slowly but surely.
    having mini flares all over body and limbs again at the moment but face is being spared for the time being much to my relief. cx

  6. Hi Caroline! It gives me faith to see your progress. Your strength gives me strength too!!

  7. Thanks Chi,
    Just had a look at your blog and it looks like you're having a tough time at the moment, hope things improve soon. It does get better, so definitely keep the faith! Hearing and seeing other people's stories about TSW really gave me strength too. You are amazing for getting it sorted out early on, well done you.
    Caroline x