- Itchiness: Intense
- Flaking : Wow, it is UNBELIEVABLY painful and in HEAPS
- Burning skin: Minimal
- Redness: Hands
- Soreness : Thighs, torso, hands, arms, groin again.
- Weeping skin : Calves, hands, bra strap area.
- Mood : Encouraging myself to stay positive
Today, I am reminded of how intense pain can be. I have not been in as much pain for a long time. This started yesterday when my whole body skin dried up, I frantically applied and re-applied moisturizer every 20mins but it did not absorb the creams or oils at all. Instead my clothes rubbed off all the oils. I took alkaline water, fruits, but movement got more and more painful as the day wore on. I know it is a process that is unavoidable. The every 3 day cycle that I have usually on just the limbs, is now full blown on face, torso and groin. Trying to fathom reasons of any changes is really grasping in the dark, is what I learn from eczema. Even if you keep everything optimal, changes happen and eczema skin has a mind of its own. I don’t want to sound as depressed as my last post. Already in pain, I want to encourage myself. I think back on the concern and care everyone has shown, and the blessings that I have.
- I celebrated my son’s 2nd birthday on 24th Jan, and it went well. I was happy. I still can’t cook for him, but I could instruct my maid to do so. And so he got to eat some longevity noodles in red wine chicken soup. 😀
2. I got breads and cookies baked by a colleague who knows I am gluten-free. The trouble he went through to getting the right ingredients and figuring out the recipe is most appreciated. I am so touched.
3. I am able to work at least. Am really happier feeling useful, rather than sitting at home facing my parents who are always showing faces of worry and sighing. I have passed 2 months and counting. As I pulled through closing accounts at 10pm on 4th Feb Thursday , I was relieved and happy. I almost gave up on the 3rd night in pain and admit I cannot do it. But it is such a pity to throw away my 7 years in this company, the presence I have built although a small fly, but still a strong sense of belonging here. To have passed this 1st round of closing makes me want to be stronger still, for next round and the huge year-end. Thank my lucky stars for very compassionate ex-bosses and current boss. I hope to be able to prove I am able to face up to expectations, albeit I need time.
4. I am thankful for my wonderful spiritual healers. As shown in my last post, when I get depressed I can feel I am losing my sanity. I remember a long time back in my late teens, I jokingly told my brother how palmistry reveals I might go insane for a short period in my thirties. My brother was irritated and chided me for believing nonsense. Wow it seems to have come! I shall write more about this in my next post.
5. Just yesterday, I met my ex-colleague by chance. She reads my blog and understands my battle with TSW. Not only was she not afraid of me, she even hugged me. We are not even close, but she could really connect on the pain I am having. That hug….. small gesture but big signal of acceptance… so touched I teared.
6. Compared to last Lunar New Year, this year I did visitings. I went home well on the 1st day of new year. I went visiting my child’s g Godpa on the 7th day too. Last year I was stuck at home throughout, and in a huge flare. So there seems to be improvement! My hubby’s relatives were quite accepting of me, despite how I looked.
7. As always, thankful for my maid who puts up with my temper, the dirt, the smells, the constant demands of my wet wrapping, different baths, meals, etc.
8. Thankful for friends, family, relatives, colleagues…..all their support. They have no idea how much each gesture means to me. I cannot show enough appreciation, and sometimes I don’t know how to….. but really, their support is VERY important and pushes me through difficult times. Always connecting and reaching out to me when I post depressing thoughts in Facebook. Friends who teared for me. Fret not, I am not upset with your tears. I am quite touched by your concern. Ask any TSW warrior, TSW is like a discovery channel to who your friends really are. Surprisingly, some you’d think show more concern were not the ones who do, and others you think couldn’t care less actually did more than most. I treasure you all. Thank you. The colleagues around me who put up with my shedding, constant sweeping off the flakes to the floor, dirty and smells and all…. the inconvenience is…. I am so apologetic, and thankful they are tolerating it. I know and am aware, my parents are the only ones who will love me this much in this lifetime. I try to be patient to them as they show concern in the most depressing ways…… still… Thankful for their love.
9. Thankful for the hubby that loves in strange ways. Even before marriage, he always upsets me first, then the soft caring side will show up in the end, giving me the fuzzy warm loving feeling. For e.g. choosing furniture / bedding / tiles…. he will reject all those I chose, criticising them as ugly or not practical or old-fashioned….. and in the end still selecting those I wanted… Situation 1 “You must work, this is Singapore” “No, you must at least work part-time, you must learn how to handle stress ,not quit the job because stress handles you” I felt totally unloved, uncared for, him being practical. Yes it is true, single income cannot support a family in Singapore. But I was hoping he will just SAY if I am in pain, its ok to quit. Not that I really want to quit! But just before I started my work, he saw my situation being still bad, he was worried. “You see how lah, if you cannot take it, resign. I think we can still survive another two years on our savings” “You cannot take it, you resign” “You can work meh?” “If very painful, resign.” Hahah love the hubby. Situation 2 “yuck! What an ugly doll” he said of my precious Baby Jack from Nightmare Before Christmas I bought in Disneyland California.
Then bought me the same anyway from Thailand. When he saw it, he bought it for me…. I was beyond surprise and happy.
10. Thankful that this situation can and will get better. That this is not a terminal illness. That this is a reversible effect from steroids. Not permanent. Thankful I have the change to be a normal mum, I just need persistence and time.
11. Thankful for each stranger on the street who bothered to reach out to me, and telling me how they have seen cases like me get better….. kind souls they are. I feel warmth from these kind acts, and I believe I deserve them because I have shown kindness around too 😀
12. Thankful for every TSW warrior who reads my blog / reaches out to me in Facebook. Thankful I can do the same for them! Some really close, even tho overseas. I can’t name all of you but you guys inspire me. we make a strange red-skinned family but I am so happy to be “with” you all! Stay strong with me! Thanks for all the encouragement, support and helpful tips.
13. My greatest blessing yet, and I know not what I did to deserve this…. my beautiful happy healthy son. I never knew real love till I had him. If I know I can love my child this deep, I’ll bear 2 more!!!
Bad pictures, showing the most affected only. Mainly inner elbows and fingers. And one day I had it bad with the thighs too. I cried. I reckon the inner elbows are showing repercussions from the sulphur lake soaks. My fingers…. it never ends. Then there were better days on and off. Anyway, the good days are like…. 1 in 10 days.. hahah that explains the lack of good pictures. One of the better days I challenged myself to wear something new and different. Because of past experience, I have been wearing socks with sandals that offers minimum friction. I took the plunge one day when I felt better to wear shoes. Bad idea. I still hurt with friction at the big toes. Then the fibres of the new pants stuck to my oozing calves… ouch.