[special post] TSW from my family’s POV

i can’t stress this enough, family support (or whatever kind of support you can get) was the most important thing throughout my entire TSW journey.
there was nothing that can speed up the healing, but there are definitely things that can be done to ease the process.

for me, the biggest comfort came from my family.
my mother playing the most important role for the past 2 odd years (i mean, she has played the most important role throughout my entire life, but it wasn’t until TSW struck me that i realize how important she is to me), also my little brother (he deserves the best brother award too), my dad, and the rest of my family.

this feels a little like giving a thank you speech on stage after receiving the gift to live my life again.
“i just want to thank my  mother, because without her, i wouldn’t be standing here today making this speech…”
yea, i probably would have died of hunger and depression if not for my mother.
[a tiny dark thought: i only stayed through because i know that if i let myself die, my family will be even sadder than they already are..]

i never expected her to be so easily convinced about what i am going to undertake.
when i told her i’m not going to use steroids anymore, she just accepted my suggestion.
i told her about dr rapaport’s paper and how he have helped thousands of people heal, she can’t understand english so there’s no way she can read his paper, but she believed me anyway.
she believed in me.
i am so thankful for that because sometimes, even i doubt my own judgement.
but she believed in me without a single doubt.
she also put herself in my shoes and defended me when others question my decision/actions.

i also want to thank all those who didn’t buy the entire TSW story because they totally made my mom seem like a gem.
and so i lived everyday surrounded by my mother’s love and care for me,
i felt like a baby again (minus the physical and emotional pain).

there’re not many who’re as lucky as me to have full support during TSW,
i feel sorry for those whose family are not convinced, and i hope that through this entry, you can somehow give it another shot at convincing them in believing that what you’re doing is the right thing.
TSW affects more than you and i.
it affects everyone who’re around us.

it’s a good idea to start educating your care givers to help them set realistic expectations too.

i actually spoke to my mom one evening before she slept [later on, i also asked my brother several of the questions to get his input].
i wanted to know how she saw the TSW from her point of view.
i have translated and transcribed our conversation so you can have a glimpse of TSW, from my mother’s point of view.

J = juliana
M = mommy
B = brother

==========
J: how do you view this entire TSW thing?
M: 既來之則安之.
J: WHOAAAAAA WHAT THE HELL IS THAT?
M: since this is already so, we’ll take it as it is. you’re the one who’re suffering, since i’m physically fine, of course it’s my responsibility to take care of you and all the other things. we have to face it, it will get better. it needs time.
B: i feel that it’s very irresponsible of the dermatologists, because they have neglected this symptom which have led to the sufferings of all the skin warriors. it’s also very unfair to their families, because i feel that no one (including their immediate family member) should be subjected to the consequences of the dermatologists’ negligence.

J: as an observer, did I heal gradually or was there an clear moment when i suddenly got much better?
M: it was gradual, there was close to no visible changes on a day to day basis. [my mom faced me everyday, that’s why she gave this response]
B: after i was back from taiwan, you suddenly looked so much better.
[my brother was in taiwan for 3 weeks. this emphasizes once again that significant improvements can only be observed if the observation time line is much longer, so please do not let the day to day observations faze you. you have to lengthen your observation period, instead of days, it should be a month at least.]

J: there are many parents who don’t believe in TSW, why did you believe in me?
M: i’ve seen it for myself! your skin only worsens despite seeing the derms for such a long period of time. if you need to rely on steroids in the long run, why not rely on your body’s own immune system? moreover, this is your choice. you are already way past the age to make decisions for yourself, it’s not up to your family to affect your decision. the derms said you need to use steroids forever, it wouldn’t matter if you can recover, but it only got worse! that’s why we can’t believe them! that’s why we have to believe that you will heal!
B: because i’ve had skin woes before and it was nothing like what you had. i feel that your cells have “mutated”. i also found out that you’ve applied steroids for too many years! i never knew that before your TSW, i thought you only applied it once in a while!

J: then are there anything in particular that really convinced you that what i have is TSW?
M: you are an undergraduate, you have your own capabilities to evaluate the entire situation. i believe in you.
J: but you saw that things didn’t improve at first. it was a year in and things aren’t looking better, won’t you suspect that i was wrong?
M: hmm.. nope. if you healed, it’s good. if you didn’t heal, then at least you know what kind of life you have to live.. i was already prepared to take care of you for life!
J: *giggle*
M: don’t you think so? haha! someone told me she wants her mother to take care of her forever, to stick to her mother for life!
J: *guilty laughter*
M: nothing is forever. i believe that you’ll heal. you have to give yourself confidence.

J: i’m still curious. why did you believe?
M: well, alot of people already healed, there are case studies from the doctor.
J: is it because i told you about dr rapaport and his paper? that’s why you believed me?
M: yes..! nothing is permanent. you have to be confident that you’ll heal.

J: are there any advice you’d like to give to other’s parents/care takers?
M: tell them that they need to have a little more patience. you know, your son and daughter didn’t want to get in this kind of situation too, if they continue to give them more pressure then it makes it harder for them to heal.  their mood will become worse, on top of their volatile emotions. if you don’t stand on their side, then things are only going to get worse.
J: i understand how parents think, they just don’t want to see their child suffer.. and to see them suffer for this long..
M: this.. well you have to be mentally prepared. it’s not going to take just 1 or 2 days. my friend did tell me that it’ll take at least 1 year. she studied chinese medicine and she said it takes at least 1 year, but she also said you’ll recover. so there’s no need to worry. you have to be positive no matter what! it’s better to be optimistic!
J: yes you’re right!
M: if your mood is bad, how are you going to get better? “tomorrow will be better”, you gotta believe in that.

J: looking back at the past 2 odd years, what was the toughest thing for you? is it to cook for me despite having to work, or is it to help me clean my room, basically to rely on you all the time?
M: oh.. all these are small matters. all these are not tough. seeing you suffer is tougher. seeing you suffer… *voice trails off*
J: *sniff sniff*

J: now that it’s over, do you feel that it’s worth the while, after suffering for 2 years?
M: there isn’t something such as “worth it or not”, it’s good that you’re healed.
J: sill girl! why are you sobbing?
M: to see you happy again, to go out again, to see your friends again, to live life normal again.. that’s the best..

J: anything else you want to add on?
M: add on? i hope that parents can be very supportive of their child, don’t feel too stressed out because no one wants such things to happen. be understanding.
J: i know that back then there are moments which i didn’t handle too well, are there any advice for those going through TSW? like things you wished i didn’t do to you?
M: i think alot of people will hide in the room, like you..! always hiding in the dark, don’t even want to see one bit of light. and you always went to see other people’s discouraging accounts (she was referring to the japanese blogs i was reading through last time, boy it was really discouraging to see that they have not healed in 2 years). it’s better after you started watching dramas, watch those funny ones! when you’re free, you can write, encourage others.. do something constructive. it’s as easy as that.
J: okay..
M: it’s not that you can’t do anything at home. you can be like a friend of yours, work from home, or participate in the stock market [she was making things up]. as long as you’re not dwelling in the spiral of doom (she mean reading the sad encounters), the more you see the less hope you have. but it’s good that you can search for more information online. the most important thing is to be confident in yourself. once you decide on something, carry it out till the end. don’t think so much, don’t go back to steroids. once you give up half way, you’ll end up with nothing. no matter what, you’ll heal. you can’t carry anything out without confidence.
B: i know that you didn’t want to see (and be seen) by outsiders, so i stopped asking my friends to come over, but with my gf.. i hoped you were more understanding about her coming up. i didn’t want to go out dating and spending money, plus i was tired from army and all i want is to stay home to rest and spend time with her at the same time.
[well, my brother did make efforts to minimize the chances of us seeing each other by residing into his bedroom most of the time so that i won’t see her in the common space, BUT I STILL LOATHE THAT IDEA OF POSSIBLY BEING SEEN NO MATTER WHAT.].

=============================================================

so that’s all i asked my family so far.
it wasn’t something planned. i was just talking to my mom before she sleep one night and i suddenly had this idea of sharing her POV with you guys, hoping that it can somehow convince one more person that TSW is true, and that quitting steroids is the right thing to do.
what’s better than letting a parent talk to another parent?

p.s. my mother went off track a little while answering my questions, i’ve actually filtered some of that out, but it still seems useful. it pertains to the washing of bed sheets and clothes. she said that it’s best to:

– soak in warm water and agitate (by stepping all over it) before washing to get rid of the tiny dust/skin that’s trapped in the sheets. she said that the water is murky.
– if warm water doesn’t do the job, use hot water to get rid of the oiliness (because i used vaseline.. tough to wash!)
– use dettol to get rid of the strange smell that emanates from the clothes. she says my clothes smell weird, i think it’s actually me that smells weird.

that’s all for my post today!
[almost went blind going through the chunk of text.. there’s something about this grey text that makes my eyes go @_@]
are there anything else you would like to ask them?

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8 thoughts on “[special post] TSW from my family’s POV

  1. Very beautiful 🙂 My parents have been my caregivers too… They believe in me and are willing to do what it takes to get me well again… And it makes sense that if the creams makes it worst, then something is wrong… But we trusted the doctors too much to think that it was a safe drug with only thinning skin side effects…

    You earned what you suffered for 🙂 Congrats!

  2. i cried reading your post. my mum and dad are so heart broken at the moment. but still they say they are not and are totally supportive of me. i’m near the end of month-2 TSW. it’s not the first time i have done this actually but i never heard of TSW before this so drs put me back on steroids again about 2-3 years ago, tho i refused oral and injection ones. i had the luxury with my mum looking after me with the very bad TSW 2-3 years ago before my wedding. my whole body and face was swollen and i was pretty much in bed 24/7 apart from eating and taking baths. my mum helped me wash my sheets, swept my dead skin, cooked for me, supported me in every way. but now i am married and i have 2 babies (2 year old and a 9 month old) i have no time to rest at all. i don’t have luxury to lie in bed all day which is all i want to do and just feel like slowly dying in my bed. i know it’s a phase and i will heal but it’s just so painful everyday seeing my family and i can’t be be a good mum, wife and daughter… it’s just so hard 😦 but i’m glad i found your blog which i can relate to more since i am Chinese born in New Zealand. you r my inspiration at the moment. i hope my skin can be as good as yours soon. but 2 years…….i need to also complete my master’s thesis next year latest by June. it’s so hard to stay positive at the moment…..

    • hi anita,

      i’m so sorry to hear about your plight. you have so much responsibilities and commitments, are there any way your parents can help you take care of your children for now? i’m sure they wouldn’t mind..! and i’m sure your husband is understanding enough, please don’t blame yourself for not being able to be a good mum, wife and daughter. it’s okay to rely on others! moreover, it won’t be permanent.

      i’m sorry if i sound like such an ass right now, asking you to try to be positive. i know it’s really difficult.. but do stay strong for your loved ones okay? they’ll be there to support you all the way, you’re lucky girl!

      i don’t have any advice for your master’s thesis. i had to complete my final year report in the midst of my worst flare, i’m sure your thesis is much harder to write than my report.. but if i can finish up my report and get a B+ on it, so can you! just commit some time everyday, even if you don’t feel like doing it, push yourself to do it. i’ve mentioned this before.. “i never thought i can make it through, but before i know it, i’ve made it through.”.

      i don’t know what to say to make you feel better at the moment, because i know that when i was sad last time, nothing really made me more positive. but do try to put yourself in perspective. don’t focus on what you’ve lost or what you will lose. focus on what you still have, what you’ve gained, and what you will gain. hopefully that’ll make you feel less negative!

      good luck and stay strong, you’re a mother, a wife, and a daughter! 😉

      • Hi Juliana, thank you so much for your encouraging kind words. My mum has agreed to take care of my baby for 3 days a week (she works full time actually but is the boss so can be flexible). I feel guilty cos then her work piles up and she’ll still need to finish it when he is back at work. But I guess the condition I’m in now I just have to take the support and owe my mum and be super nice and helpful to her after this hell journey. My 2 year old goes to daycare full time so it’s a bit better. For my thesis I’ve actually suspended it for a year due to Childcare and was planning to do some work on it during this year but things just got out of my control – everything! I hope I can at least feel better a few months down the track and by then both my boys will be at daycare at the end of the year so I can focus on my thesis next year full time. I really need to get a good mark (B+ or above) as I want to get into PhD entry. This is actually my 2nd master thesis degree cos my last one I only got a B. so if I don’t do good in this one I’m seriously screwed and wasted all my time on it. Sigh. I wanted to ask you about moisturising; I’ve stopped moisturising cold turkey yesterday cos I think it’s making me itch and burn a lot and it’s painful without moisturiser but skin feel much better. It seemed my skin can actually breathe again. Was there at any point you didn’t moisturise your skin at all? Btw you r looking more and more beautiful day by day! Thank you for giving us the encouragement that’s going thru TSW.

      • hello super mommy! you’re just amazing. i have no idea how you can even try to toggle SO many things at the same time. you have so much on your plate! good luck for your thesis, buy your professor alot of coffees and drinks, maybe he/she will give you that + you need. 😀

        regarding moisturizing, there was a period of time when i didn’t use anything at all. i can’t remember specifically when, but i remember that my skin used to be red and warm all the time, if i apply anything on top it’ll just make me itch even more. so i think it’s completely ok to not apply anything. dr fukaya says to apply just enough to ensure mobility and flexibility. it’s really up to you, do whatever that makes you feel more comfortable. it’s your skin after all!

        thank you for letting me know that you feel encouraged through my posts. that keeps me going 😀

  3. Hi Juliana,

    I read this post because I searched “family support” for TSW and found this blog. I haven’t read through your whole blog, but every post I read on people’s experiences with TSW is opening my eyes more and more, and this is no exception.

    My boyfriend believes he is suffering from TS addiction/TSW. I believe him and support his decision to stop using the steroids. He started his TSW journey on Aug. 11. I was not prepared and still feel unprepared by the effect TSW is having on his and my life. Needless to say, it has been a rough two months for us.

    I have a few questions I’d like to ask you, but preferably over e-mail instead of on the comments section. Hopefully you can see my e-mail based off this post, but I can always send it your way.

    I’m glad you have reached the light at the end of the tunnel, and I hope my boyfriend will too, soon.

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