So my month 5 just started but so far it is not very nice. I started flaring up a few days ago. My face has just been going crazy with flakiness, the only difference is that in the first month or two my skin was flaky but it was very small specs of skin and now I see big pieces of skin coming off. It is cracking and oozing as well because it is so dry again. Still trying to do moisturizer withdrawal all over my body but having a tough time with my face, especially around my mouth so I have been using Paw Paw ointment as well as vaseline. I have been sad because the Sudocrem that I love so much now makes me super itchy!!! I use it every time before I lay down because anytime my neck is scrunched or bent it does this weird sweat thing and it stings!! then I wake up or get up from laying down and shred my neck to bits! So I learned to use it around my neck before hand and it saved my neck!! Now the cream is making me itchy 😦 It does help certain areas still but makes me quite itchy for the most part. My eyebrows were starting to come back but im not sure now since this flare up. My ankles have been giving me grief as well which is the first time I have had real trouble with then since starting TSW. But I think the worst thing is my forearms, wrists, hands, and fingers. They are awful! Cut to bits, itchy, dry, and oozing all at the same time. Makes for doing anything very hard! Dishes are a nightmare because water hurts let alone soap. My wrists are back to the fragile skin, it feels like the skin is so weak and flimsy that the slightest touch makes it all peel off and be so raw.
I am back to scratching and doing so much damage in my sleep. I had a bit there were sleeping was actually a nice time. Now I am back to the ”sleeping” but half awake and scratching. I have to wait to be so exhausted that I pass out to be able to get any sleep, and a good night is about 3 hours of sleep now. I had a bit where sleeping was so nice and relatively easy to get and I could get comfy, even during that time though I was still not sleeping at night. Day time is always when I get sleep, so weird!
Even though I feel this flare and it is painful and it hurts and I feel like I am going backwards a bit, I take everyones word that I am healing!! Even through it all I still dont feel like its ”that bad” I have been through worse and I have survived and gotten through it and so here I am experiencing pain but I believe in myself so much more and can see what I can get through and I feel like nothing can stop me now. I sure hope TSW doesn’t test that, but I have no other choice. I have to get through it to get on with a better way of life. Before knowing it was TSW life just wasnt life, so this is it for me. Doesn’t mean its not hard but it has shown me what my body is capable of and what I can do all by myself if I just leave my body alone to heal. Amazing!! My whole life I was made to believe that I was to leave it up to the ”professionals” but why not leave it up to my body? Why meddle when our bodies are capable of so much! I believe in myself so much more now. I have done this! I found the information, I found the cure, despite what the ”professionals” have said I have been the reason I am doing better. That is amazing! I am capable of so much I just need to remember that. I am the only one who knows my own body and I just need to listen to what it is telling me. Thats an art though that I am very rusty at and I think it should be taught to kids to listen to your body and hear what it needs and what it is telling you. We could avoid so much unnecessary prescription drugs that damage our immune systems.
I do have some low days and I have days where I wonder if this will ever end and I have moments where I just feel so discouraged and so sick of this!!! But it mostly comes down to the fact that I have no other option, which is scary and I feel trapped in this sometimes, but if I face reality and know that I will one day be done with this and be healed I just have to keep going and might as well be as positive as possible while doing it! Happy month 5 to me! Hopefully it gets a bit smoother soon!
Things have been getting worse and worse everyday, mostly on my face. My face is soooo flaky and sooo dry but also oozing! Not sure how it can do all these things but TSW amazes me everyday. usually not in a good way. All around my mouth is swollen and cracked and dry and oozing and I can’t open in very far, makes eating and drinking difficult, also talking is a challenge, which my boyfriend might enjoy at the moment! My hair never stopped falling out but seems to be worse at the moment, I have so many frizzies everywhere it sucks! My neck is better actually, still blotchy and red but not as raw and not quite as itchy. Sudocrem is working again on my neck for the time being so thats nice at least. My fingers, hands, wrists, and forearms are still acting up with lots of deep cuts and lots of raw and oozing spots, and extremely itchy! I find I get so down sometimes just by looking at myself. I have to remind myself constantly that this is normal and this is healing. This goes against everything I have ever known to be considered healing so I think thats why I get so discouraged so easily. This seems like the opposite of getting better!! My days are filled with full time pain management and just trying to get through takes so much energy. Still so thankful that I do not have the stress of work right now, during my mild break I wanted so badly to work but I waited and I am glad I did, my bank account isnt but I am! Our new place is so amazing and beautiful I am so happy that I am at least flaring after my move! I love my bathtub!!
My days now consist of cleaning my bath (because im obsessed with their being no fuzzies in or around my bath when im in it) then having a bath with apple cider vinegar, epsom salts, and tea tree oil. Then I get out and wait for everything to dry out and get all stiff, mostly my face! Then my hands and arms get itchy and dry so I scratch them a bit, while trying not to destroy them! Then I put sudocrem on all more super sore and oozy bits, mostly my forearms and wrists, and my new favorite for this flare is wrapping my forearms and wrists. First with toilet paper and then with gauze somewhat tightly. This helps me not do too much damage while I sleep. Hoping to get some gauze for my ankles as well as i often scratch them while sleeping. most of my time consists of trying to get some sleep
it is a bit tough to type with my hand/wrist/arm bandage done up but it makes such a huge difference!! I wish I had of started doing this right at the beginning, although i think the itch and flaking was too intense during my first flare that I dont know if I could have handled keeping the bandages on very long but I am so glad that I started now. Such an amazing different especially during my sleep, so often I woke myself up from the pain I would causing from scratching while I was sleeping. Sometimes I still scratch and get under my bandages but its a lot more work and I usually wake myself up before too much damage is done. Also the pressure on my skin makes it so I don’t feel as itchy as often so I try and leave them on whenever I can. I find it is best to use as little sudocrem as possible under the bandages because it causes too much rubbing. Very happy and will continue to use these often especially before bed! So basically I go to bed looking soooo sexy!! 😉 I have to slather my neck in sudocrem, then I have to wrap a towel around my neck. I wrap up my hands/wrists/arms in bandages, I have to put my hair up in a gross sad bun, usually sudocrem on my ankles and then I can begin to try and sleep. I am amazed that I can sleep with all of this going on but I guess when you are tired enough you can sleep through anything.
One thing I will never ever take for granted is sleep. especially because during my first and second flares I couldn’t sleep much at all because of all the pain I was in it was so awful. What can make pain and dealing with pain worse? Not sleeping, thats what. I would get so over tired and so exhausted everything was just so awful and so overwhelming. So, that being said at least during this flare I can go to sleep and I can sleep for long periods of time (3-9 hrs) I can however only do so during the day… I try every single night to go to sleep so I can try and have some normality in life but it never works. At night I can only stay asleep for 15 mins to 1.5 hrs but never longer. It sucks! But I am very thankful that I can at least sleep during the day. And by sleep I mean pass right out, deep sleep! It is wonderful, as far as flare sleep goes!
My face continues to be a big part of this flare up. But it is showing some improvements. The improvements can be deceiving though because one moment I look and I feel like tings are getting better and the next minute they are back to being awful. Having said that I do thing that the 1 step forward 3 steps back has still shown some differences. I am hoping that after this flare the skin around my mouth will be better and easier to deal with during a break. In my other breaks my face has still always been flaky, I could always minimize this look with some oils but it would get so itchy and flake again and mostly a problem around my mouth. So with this flare focusing mostly on the skin around my mouth I am hoping this will help heal! I guess thats all we can ever hope for during a flare right?
My ankles have been going up and down as well but I think are showing some improvements. My hands and wrists are still not looking much better. My fingers seem to be healing a bit more as before it seemed they were at a stand still and constantly open and oozing. The skin around my wrists are so fragile and at any scratch continue to just peel off. Not nice! I know that the skin is all one organ and I know that it is all damaged but I applied topical steroids to my fingers and wrists the most for the longest. About 2 years actually and I applied topical steroids to my whole body for about 3 months. I did however take prednisone in the last 3 months as well so I know that didnt help. I am just guessing that my wrists and hands will take the longest to heal, we shall see I guess. Also, I am still soooo in love with my amazing bathtub!!