Progress notes
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7 months 12 days / Day 226 (27 Feb 14)
Used moisturiser!!!I cheated. I used Vaseline on my neck and back of neck today it was far too sore when I moved. I just didn’t realize how often I used my neck until it hurts! It was ok immediate relief pretty much no itching when I put it on. Which is good. I don’t dare to put it anywhere else. Well I don’t need to anyways. So yeah I have been scratching my neck pretty badly every night and it’s pretty raw when I “wake up” in the morning and it’s very sore upon contact with air. I was thinking of wearing a scarf but it’s just bloody too hot and I don’t really have a scarf that is purely cotton, so that it won’t irritate my skin.
====== moments later ======
OK I remember why I was so PRO-moisturiser-withdrawal now. Apart from the huge reduction in redness and intense itching, it was the extreme dryness AFTER the moisturiser has DRIED UP or been sucked up by the skin, the dryness was much drier than pre-application of the moisturiser. My back of neck is starting to get sore now and much dryer than before Vaseline application. I will try not to use anything on my skin again.
Picture was taken yesterday. Face all red.
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7 months 16 days / Day 230 (3 Mar 14)
So I stopped moisturising after that little bit of Vaseline on my neck that day and I just bear the dryness after a shower. It seems to be a little better after showering. It was dry and sore still but at least it felt clean as the ooze and dead flakes were washed out. So this week things have been drying up and peeling off, no oozing (my hands, back of neck and legs). Last week I was waking up with 3-4 hours of sleep max all sore from the scratching last night and had raw skin. Ouch
Antihistamines
Yesterday I decided to take something to make me sleep better again. I have been taking magnesium which doesn’t last long or work. I dug out some old antihistamines! Score!! Cetirizine! I used to take it back in the early months of TSW but stopped once I finished the prescription and didn’t wanna get more since it didn’t help much. The ones I found yesterday was expired… damn but I took it anyways it was only 6 months off, I heard it only loses it potency and it’s not harmful to take so I took two (I used to take two before as well) and wow it worked wonders last night! The medication didn’t wear off this morning and I was sooo tired. I fell back asleep and didn’t wanna wake up after my husband took my boys to day-care! So I made myself get up at 10am! After falling back asleep around 745am cos I had a list of to dos today. So I’m glad the antihistamines are working once again for me. I think back then TSW symptoms were too strong and I took antihistamines too long? It’s the same with all drugs the longer u use it the less it works. I forgot where I got this source of information but I remember someone saying that antihistamines only takes 6 weeks of use before it loses its effectiveness or for one to become resistant to it??? So it’s best to use it for a while and stop for a while and then use it again.
Experiment with ointment on left hand
Yesterday my dad bought me this healing ointment. Sigh. I decide to give it a lil experiment as my skin isn’t oozing now and I put it on my left hand only and will keep using it and compare it with my other hand. It’s an ointment and pretty thickish and it stung very little after applying it on for a few mins. But that was it I was fine. I did scratch it afterwards but not intensely. I think my intense scratching days are gone from applying moisturiser on top of my skin. I think my skin is not as ‘hot’ and ‘red’ now so it can handle moisturisers. But I’m still skeptical about it and I hate hate hate the fact that I need to apply moisturiser each time it dries up. It’s so addictive and I don’t really like it. I’m a very lazy person in general so not doing anything to my skin is good and gives it space to just heal naturally.
Left hand with ointment, right hand no ointment.
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7 months 17 days / Day 231 (4 Mar 14)
Sleep is my medicine baby!
Wow, 2 nights of rather ok sleep did wonders to my face and skin in general!!! I’m less red and dead skin and scabs are falling off so much easier. My hands have improved (both hands) I don’t think that healing ointment is doing wonders to my left hand compared to my right. Even though I’ve only used it twice so far.
I also handed in the draft of half of my thesis to my supervisor and that shed off some weight off my shoulders for now. It’s my hubby’s bday tmr. I’m figuring out what to do for him as during this TSW he has suffered a lot. I must be extra nice to my husband he deserves all the love!
From this pic you can really see what good sleep does to skin!! and also less stress!!! My face is not as red, very calm. Might also be due to cooler Auckland weather too!
My hands the next day. Left hand with ointment from yesterday, right hand no ointment.
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7 months 18 days / Day 232 (5 Mar 14)
Good sleep last night too yeahhhh baby!! But I still woke up a couple of times to scratch my face. I have noticed the antihistamines not wearing off yet in the morning when I wake up for the boys and I tend to lose my cool for the littlest things=======================================================
7 months 19 days / day 233 (6 Mar 14)
Didn’t take antihistamines last night as it was making me super tired during the day. I fell asleep on the couch after my lunch yesterday! Though it was nice, the feeling of having to get up was sooo bad haha so I will try to just take 10mg 1 tablet tonight and see how it goes cos with no antihistamine last night sleep was not good My hands are extra red today from yesterday due to scratching. Again the ointment on left hand is not doing much of a better job than MW on right hand. And I scratch both hands pretty much the same amount. It is less red on both hands tho, I think it’s the good sleep from before not the ointment 
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8 months 2 days / Day 244 (17 Mar 14)
8 months in TSW! Not much to say about my skin. It’s a slow progress. It can get quite disappointing. It’s tough to stay positive. But I try very hard and my best to. Things are a lot better nowadays so I really shouldn’t complain. The days are going by much faster compared to the earlier months of TSW where every second felt like a month and I just want to die. I am still itching a lot and slapping my face :( I still have bad wrinkly skin, cuts in my hands, sores in some areas, but it’s much better I have to say.
Sleep is still shit, though better. I had to stop antihistamines as it was just too drowsy to take a few days in a row. I prefer 5htp more. But I realised it was the 5htp that was causing my bloated stomach and nausea so I had to stop taking it. I used to take 600mg though! That was cos it just didn’t work with a low dose of 150mg and once I increased it to 600mg and I was sleeping like a baby. But since then I got nausea. I always thought it was the TCM causing it but it wasn’t it was the 5htp! So I have decreased the dosage and back on 150mg, I don’t get any nausea or bloatedness but anything above 150mg, it’s pretty uncomfortable side effects afterwards. But I like the 5htp as it does calm me down the next day despite not much sleep. Like I don’t lose my cool that often. Because it is a natural antidepressant after all. And even though I still scratch all night, with better naps in between, my bed sheets are no longer THAT bloody and covered with oozing stains. My pillow case is still dirty as my face still oozes a little and bleeds when I scratch it. But I’m glad I don’t have to change my bed sheets that often now. I still have BILLIONS of dead dusty skin flying around and vacuum almost every day.
My inflamed sinuses have come back and have a bad runny nose and mucus. Getting headaches now and then. Sigh. Extra shit on top of TSW yay!
I have stopped the healing ointment. I know I sux. I can’t really conclude much from a few days of use. All I can say is that it didn’t do jack all, both hands are healing or flaring at the exactly the same rate. I didn’t think the ointment helped or exacerbated my hands. So, I’m not going keep using it :P
I’ve also started taking Pycnogenol 100mg a day heard from a healed TSW that that helped along with diet which was cutting out wheat and sugar hahahaha not for me! it’s just so hard to cut out wheat and sugar. I know it’s bad. Maybe later……
I have stopped taking my vitamins cos I’ve been lazy. I am re-taking them now along with Pycnogenol.
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I have stopped flaring I think. My neck and hands are no longer weeping (until last night… I had some of dessert made from milk which I’m allergic to). Redness has gone down for most areas. My flare only really lasted 2 weeks. Flaring as in, more itching, redness, swelling, oozing, more sores. When I’m not flaring, my skin is dry and flaky, not oozing, still sores but not as painful, I have been wearing shorts and t-shirts out in the sun again when it’s hot yay!
I will probably document my flares a bit more in detail later. Need to concentrate on my thesis. So can’t blog too much. I do have some thoughts on my mind though….
Happy warriors!
First of all… Congratulations to Esther and Rhys! OMG what a beautiful wedding! Congratulations again! I wish you both to love each other more every day and walk hand in hand to chase and fulfill the dreams of your lives together! I so admire Esther’s strengths to be truly pretty inside and outside on her wedding day. You go girl. You and Rhy deserve all the love x
Putting your life on hold for TSW
I’ve come across some warriors who just had to stop their TSW journey for now and start again later. It’s ok, it is hard sometimes with what life throws at you. I have been through this a couple of times. So many times my parents are like: “hey just take some time off and get treated for a couple of months for your ‘eczema’” and I’m like: “I can’t leave my job now! I can’t quit my studies now! I don’t want to look ugly in front of others”….. But seriously, if you really think about it, TSW takes say 1-2 years of healing till you feel ‘OK’ again to revert back to normal day to day activities, if you lucky 6-12months [disclaimer: this is just my personal observations from other warriors], that is like NOTHING compared to the years ahead of our lives. I feel that taking a year off to just relax and do jack-all and really just allowing my body to heal itself is actually showing some respect to my body from all these years of mistreating it. All these years, my body has been showing symptoms like redness, dryness, oozing etc but I didn’t listen to my body I just slashed on some steroids and carried on. My body was telling me something was wrong but I didn’t listen. And let’s not get started about doctors repeating our steroid prescriptions. So I feel like I owe it to my body and health, it’s time I gave my body and health some time to rest and heal. Many like I did, worried about putting a pause in our lives and what’s gonna happen to work and study and I will lose all my friends and networks, I can’t deal with hair loss, I can’t live with no make-up etc. No, like as Josh say you have nothing to lose. You can have your health back and that’s the most important thing. Please watch more of Josh’s videos of his TSW journey he is nearly healed and we must learn from his positive-ness! He was positive right from the start of TSW – amazing! In fact, we have lots to learn and gain from TSW, I was lucky to find this out earlier in my TSW journey, see my post on Gaining through Suffering. We are lucky to have ITSAN now and so many TSW veterans and warriors guiding us.
Keeping active
Well this time TSW round, I couldn’t “do nothing and relax” with two toddlers. But it was also them to keep me going and stood strong to face TSW. Keeping active was actually speeding up my recovery in some way and Josh talks about keeping active too in his videos. It’s the physiological activity that assists in healing. I can sure tell you that I am recovering faster this TSW compared to my 2009 TSW rebound. In 2009, I just lay in bed all day with my mum and family getting me stuff like food and water. I crawled to the bathtub and toilet every day and it took 9 months for me to feel ‘OK’ to get out of bed and have dinner with family again. I have to admit, back then I took oral as well as topical steroids so the rebound was much severe.
Pressure?
There is absolutely NO pressure to those who have not started their TSW journey and are thinking of starting but not yet. Or those who have started, quit and will start again later. Please plan ahead and do it at your own pace and when you are totally ready. Tell your close ones, if they are not convinced, just leave it. You just have to believe in yourself and have at least ONE supporter alongside of you, and of course you have hundreds of supporters on ITSAN remember? Take some time off work and/or studying, post-pone things, let your friends know that you’re gonna be in the woods for a while. Be transparent, there is nothing to hide or be embarrassed about, you’re just gonna withdraw from a drug called (topical) steroids and be sick for a while. THAT’s it. Go rent out some movies, stock up on some (healthy) food you love, prepare for some pain and insomnia and RELAX because you are allowed to! Although it’s gonna be painful, but make it a HAPPY one!! fuck yeah :P
But once you start, don’t give up – that is part of the plan ok?! Keep faith and stay strong!
Carers of TSW warriors
Had been browsing through other warriors blog and reading comments on a Facebook Eczema TSW & RSS and just had to stop as it was too heart breaking especially seeing photos of babies and children go through the pains of TSW. I have to say that these babies and children are so lucky to have such wonderful and amazing parents to help them with TSW, they are in pain and unfortunate now, but are soooo fortunate to have their parents help and to go through a bad event at an early stage in life than go through so many vicious cycles of rebounds of steroid usage and then realise in adulthood that they have a steroid addiction. So parents please don’t beat yourself, you are doing such an amazing job! Your child will be such a resilient person when they grow up. Document their recovery process and tell them along the journey and when they are older how strong they have been since a wee child and they have nothing to fear in life ahead of them because they are already a winning warrior. Just like their mummy and daddy x
When I’m down, the only way to get me out is read about Buddhism/positive stuff. I came across this beautiful site: Thanking the Spoon. These particular words really helped me:
- Life is a constant struggle between light and darkness. This is a fact. So the only decision you have to make is whether you make this struggle a joyful combat or a painful ordeal, whether you accept and enjoy it or refuse and endure it.
- When faced with obstacles, learn to rejoice instead of retreating. Your challenge is a sign that your life is asking to grow. So, are you going to say Yes or No? Say YES when your life is asking to grow.
- You must develop deep determination, “as if you are trying to strike fire from damp sticks or extract water from hard ground.”
- There are times when I feel that all I have left is my determination. And in the end, that is always enough.
Keep faith. Stay strong. Happy healing xxx
Hi, it's so good to see your new post. We look forward to your new updates. I'm so glad that the MW is confirmed to be the best course of action. I'm MW Adams skin now in preparation for TSW which we'll start in April. He is so so so much better without creams and so much happier too. The only place we do moisturise is his face and that is the dryest and most problematic and itchy part of his body! So glad you confirmed that. I'm stopping the face ointment today! I'm also planning to start a blog to follow our progress when we start.
ReplyDeleteAlso wanted to thank you for such great posts on encouragement and positive thinking, it helps a lot to be reminded to be strong, positive and keep going even though we haven't started, we do have a lot of skin problems. All the best and happy healing xx Hana
Thanks Hana, I wish Adam and your family all the best towards this TSW journey. it's great you are all prepared and have a positive mindset already. That's the way to go :) I'm glad my blog has helped other people, at least this is the positive I have made out of this rather negative TSW journey ;) lots of love to you and Adam xxx
DeleteHello Ahfaye,
ReplyDeleteI have been following your blog closely since I started my TSW in January 2014 and this is the first time I am commenting, so firstly, hello! :-) I just wanted to say that I hugely admire your strength, courage and determination through this journey and reading about your journey certainly keeps me going at times when I am feeling particularly low about myself! Your blog has taught me to have self love for myself and to stay strong and for that I am thankful!
You are looking really good in your progress pics! Happy healing!
Manpreet xxx
hi Manpreet, nice to hear from u :) thank you for ur kind words. I am glad my blog is helping you a little bit. i sometimes need to re-read what i've written to keep my determination up, funny that. i'm very happy u are loving urself more, we all need to do that :) happy healing xxx
DeleteI don't know how you can write so much. I definitely have a lot to say, but to type out all that. You show incredible strength in so many ways!
ReplyDeletethanks San. i just blab all my complaints out :P i hope ur flares have calm down now, must be tough for you to work and go through TSW at the same time, esp when the big flare happen so late in TSW for you. I hope it's the last for you. keep up the spirits warrior! xxx
DeleteHi,
ReplyDeleteI just stumbled across your blog from Google. Wow, you are a very brave and courageous woman. Two years I go I got eyelid eczema and persistent dry flakes on my philtrum. The doctors prescribed my steroidal cream which made it worse (I also refused to use it on my eyelids in fear of cataracts) and after a while gave my Protopic (which was expensive and worked for a while, but made my eyes itchier). Anyways, after that I tried Moogoo, unrefined tamanu oil, and Allergenics emollient cream which are all steroid free! Using them have decreased my redness on my eyelids significantly such that they don't puff up in the morning any longer and aren't nearly as itchy as before. Just wanted to suggest what worked for me and hope you get better soon! Keep it up :)
thank you so much for dropping by and the encouraging words. i have tamanu oil at home!! i have heard of it's great benefits. i will start using it soon when my skin is more calm thank you! x
DeleteHey Fellow TSW warrior :) I spoke to you a while back whilst I was in my first week of tsw (I'm now in my 4th month and counting) on the Buddhist section of your blog. Honestly just go to the picture at 89 days and compare it to these new ones you have up. The evidence is black and white darling. Look how far you've come. I feel a bit hypocritical saying that because sometimes I myself have self doubts about me healing and when I'm going to heal. Thank you so much for the whole blog because it reminds me WE will heal, because a picture is worth more than a thousand words (I think that's how the saying goes) I understand completely what you're going through and been through. I know people probably say this all the time but be strong! Imagine in another 8 months time, the flawless beautiful skin you so desire will be yours again. see this journey as a time to kick back and relax. its not so often we get to appreciate the comfort of being at home, considering how hectic life is lol :). I can see you're a great person by the positive words you write on your blog and a much greater person than me considering how you're handling this. In the initial stages, it got the aggressive and pessimistic side of me, it still does :/ its just frustrating sometimes, 4real :(. I'm sorry for the essay long post lol but I just thought I'd "blab my complains out" as well :P Whenever you feel down and I mean down remember how sweet life will taste when you heal. Any time you need to rant about this TEMPORARY (extreme emphasis on temporary) situation, just get in touch. Much love and respect from the UK :) HOLD TIGHT FAM :)
ReplyDeletehelllloooo buddy!! thanks for dropping by again! yes, i remember ur last post :) congrats on surviving 4 months of TSW so far!!! well done!!! yes i freaked myself out a lil looking back at old pics... my face was shocking back then and i can't believed i lived on and survived during those hell days. i am so glad my story is helping you and others, i sometimes still get anxious about putting all my vulnerabilites out there so publicly but then the whole point is to help others, even just a little bit. so mehhh. oh trust me i have my emo days where the tiger-me gets unleashed and u don't wanna be near me lol guess i just didnt' post those too negative thoughts out as it just does not help ppl reading it i think, it sends ppl negative energy i think and that's the last thing i want when i'm in such a vulnerable state during TSW. we need more compassion and positive energy so we can strive through this TEMPORARY low point in life. i still do have self-doubts, we seriously need to win over our mind and focus on all the veterans that have healed. thank you again buddy u have made my day :) happy healing xxx btw i like long essays :P
DeleteNo problem :) G (cuz thats what u essentially are..A straight up G), I actually was having a very bad moment and just came across your page again and needed some reassurance I guess. emo days? ive been having emo months lol I was already a bit cynical before I started this due to personal reasons so i guess optimism is a real struggle :/ i got unbelievable respect for you because of the simple fact that you are showing your vulnerabilities. i dont know about you but i've become reclusive from uni, mates and sad to say even family members that live with me ! I think its because i dont want them to see this side of me, the depressed, moody, extremely pessimistic version of my former self. So i wouldn't actually mind the negative stuff you got to share, i can relate :) btw if you dont mind have u got an email addy to vent sometimes lol
DeletePeace :)
i did exactly that and shoo-ed away my parents in the beginning months of TSW :( vent to me! email.ahfaye@gmail.com ;)
Delete