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Wednesday, 17 July 2013

Exhausted.

I'm absolutely exhausted, both physically and mentally. It's all becoming a bit too much to bare right now.

The past week has been such a challenging one; constant moisturising throughout the day to better my skin, to have all my hard work undone in less than an hour of sleeping. I give up. I'm defeated. My skin is weeping incessantly. It started on my neck, chest and face, as is its wont, but has since spread to my legs, arms and now my back and tummy. Literal full body weeping. I've been a bit concerned regarding my legs because they look worse than they ever have but I don't think there's any infection present as the areas aren't burning hot as they would be typically. I think this is just a side effect relating to the TSW but it's really wearing me down.

I wish I could induce myself into a coma for the next couple of weeks just to get some decent sleep and not have to constantly pack my body with tissue to stop the ooze. The heat obviously isn't helping matters either.

Photos are a little on the sparse side this week, which you'll agree is very unlike me! I've just been too consumed with the itch and the ooze to even want to take photos. So these are from the last fortnight.

 
1. Classic red skin vs. white palms. They were far redder than pic shows
2. Morning mayhem - look at all that tissue in the bin! (and floor...)
   
3. "Elephant" skin
4. Purple leg due to scratching

5. Donning my Dreamskin head mask.

All I can smell right now is ooze and it's driving me crazy. The smell is truly awful. It reminds me of rotting. Bork.

The Dreamskin mask isn't doing anything for me at the moment. It's supposed to help regulate your body temperature and help to heal by relieving itching and improving skin hydration but because I'm oozing so profusely it just ends up binding itself to my face.

I keep going through phases on a night time wondering if being fully clothed would be better or if being naked would work more in my favour. Neither seem to show any improvement, though at least when naked my clothes don't stick to me and get coated in smelly ooze. I am going through towels like crazy though. A large and small one for after my shower, one on the couch, occasionally one between my legs to help stop itchiness when I'm laying down, one on my bed on a night time. Wash, wash, wash. Ooze, ooze, ooze. Cry, cry, cry.

16 comments :

  1. Poor you, I can really empathise. My skin is having s terrible flare and sleep is nearly impossible in this heat. I too am stripping off and then getting dressed at bight and not sure which is best. Just want to stop the itch and so tired of the constant maintenance, I seem to spend all my free time pandering to it and with no results. I just want to be/look/feel normal.

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    1. Aye, it really sucks :( and don't worry about the typos :p my posts are probably full of them! I've had 2 baths and 1 shower so far today because I just can't deal with the ooze. It's gross.xx

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  2. Excuse the typos! That's what happens when I rant!

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  3. Hi, Jenny. I'm sorry you're suffering so much right now. The ooze is definitely the worse aspect of TSW. I too am suffering from full body ooze right, so I completely feel you. I wouldn't wish this on my worse enemy. The feeling and smell are just downright horrible. Right now my only solace are showers/baths, paper towels, and the blow dryer. The blow dryer helps for warming up my sheets since I'm freezing constantly. I sincerely hope we both see some relief soon. This is just no way to live.

    Hang in there xx

    Chantal

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    1. It isn't is it? :( I'm still having to go to work but find it so difficult just to stay for my shifts and I'm only contracted to 18.5hrs a week over 4 days. Every time I leave the house I just want to get back into the bath/shower. Luckily I don't seem to have the freezing sensation as often as I used to but am sweating profusely when I am too hot instead, which seems unusual compared to everyone else who find they can't sweat at all.

      You hang in there too lovely :) I'm subscribed to your blog xx

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  4. So sorry to see you in so much pain Jenny. One day you will be free, though its complete torture to get there, I know. Stay strong. I remember when the bath tub was my only friend... Things *will* get better. Elaine xx

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    1. Thanks for your kind words Elaine :) xx

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  5. feel better jenny.
    TSW sucks.

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  6. Jenny - Hang in there girl! Are you still off the cyclosporine?

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    1. Cheers Tracy! No, still not taking Ciclo I'm too scared of getting herpeticum again on top of this. I shouldn't because of the Aciclovir but I'm still worried. Still on antibiotics though x

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  7. Sad to see your pictures. I hate to see people suffering in the early stages of TSW. It brings the horrible memories flooding back. The ooze is the worst symptom of TSW. Have you managed to get hold of any domeboro? I know it is only available in the US, but you can sometimes get it on ebay and amazon. It is really good.

    I have two sachets at home. If you would like to try it, message me via my blog and I will get them to you

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  8. Amazingly, I found it on Amazon. Its really expensive. Also knows as 'Burrows Solution' - a search for it under that name might yield something?
    And ice - you got ice packs Jenny?
    God, what a nightmare! E xx

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  9. That looks and sounds terrible, much worse than anything I've ever gone through. I'm so sorry you have to experience this. We owe you for sharing--people need to know how bad it gets.

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  10. Oh Jenny... Am soooo sorry for you.I am not half as bad but feel awful some days with itch so I cannot imagine how you must feel.Thinking of you, Aoibheann xx

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  11. Stay strong my friend, the hour before dawn is always the darkest. I pray that you will find respite soon.

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