Wednesday, 3 September 2014

Being so rare....

I took part in Ichthyosis Awareness Month (IAM), posted IAM selfie and shared my story of living with K.I.D Syndrome. I learnt a lot and I'm glad I took part. It has made me think about my life and how I felt about living with ichthyosis. Now I've joined some groups on Facebook and read people's blogs. I know I am not the only one with ichthyosis and have similar experiences with other people who have ichthyosis.

IAM: It made me wanting to raise more awareness so there will be less bullying in the future, and no people will feel insecure, especially in their teens or starting out with dating etc. Sometime I talk about my life with K.I.D Syndrome in the hope of helping people. People often turn to me for a chat or advice because apparently I'm easy to talk to so I want to be the person people, with ichthyosis, turn to. I have ichthyosis so I could help out a bit. Maybe in the future I will do more to help people with K.I.D Syndrome and/or with ichthyosis but for now I'm doing my usual charity work with deaf and hearing children.

Now it has been 4 months since IAM, I had been thinking a lot and questioning myself a lot too. Looking back, I don't think I had ever accepted that I have K.I.D Syndrome, maybe because I did want to be 'normal' yet I also wanted to be different. Over the years, I've found my skin were getting more better and now I'm more accepting of my syndrome.

Years ago, I used to think it was so much hard work living with the syndrome but now it got much easier. I do have bad days when I get so fed up because I have to go to hospitals for my review appointments and going to the chemists for my prescriptions. Making sure I have enough prescriptions for travelling. Hated living with the syndrome when I learnt I wasn't allowed to drive due to my eyes. Thankfully I am now allowed to drive and currently looking into driving lessons.

Disliked the deafness part of K.I.D Syndrome because again, it meant ENT appointments. Also we don't know why my body rejected cochlear implant. Maybe it was due to the syndrome or something else. Currently I am going to my appointments to talk about it. Sometime I do wish I can hear and talk like hearing people. It just mean easy life. That is how I feel on bad days.

It made me think about how I behave when dating and in relationships. Living with the syndrome do affect my behaviour because I do worry about waking up and not having the chance to put my cream on before he wake up etc. Or him holding my hands when my hands are dry. Or even when my eyes are watering I get 'are you okay?' because it do look like I'm crying when I am not, maybe it's because my eyes are too sore or dry. Feeling embarrassed when I lip-read him wrong etc. Worrying about my cream getting on him leaving him greasy. Didn't feel feminine because of alopecia. Being bullied in the past did affect me.

Looking back, it was always me pushing people away in fear of them thinking I'm too much hassles. Thankfully I've been proved wrong many times over the years! More older and wiser now!!

I do love being rare because I like to stand out and be unique. But there are cons of being rare, not many doctors know about K.I.D Syndrome much to my annoyance. Not many people have the syndrome, so I can't talk about the syndrome and to share experiences. There's not much knowledge about the syndrome.

What to do about unexplained rashes I get now and then, is it related to the syndrome? Or it's just eczema - have been diagnosed with it but doubt it really. What can I do about it, but to try to have a good diet and exercise often. Going to the doctors to get steroid cream or medication for the itching and having to explain about K.I.D Syndrome to someone new if I don't see my regular doctor. Wondering whenever my skin is playing up, is it due to tattoos and piercings or what.

Now and then, I do think am I too personal, over sharing or what? But then some days I don't care if I share too much because it might have helped ONE person out there knowing they are not the only ones with K.I.D Syndrome / ichthyosis / eczema or whatever I have experienced in my life. I'm grateful for the internet because social media and blogs have helped me a lots and got me where I am now - bad ass lady!!!

Every year I look at my blogs & my life and realise that I have been through too much shit in my life yet I'm still here loving life, most of the time! I'm only human I do have bad days! My love of extreme sports and travelling has grown a lot. Some people think I'm annoyingly positive and happy. I thrive on challenges that come along in my life. I choose to look at the bright side and brush off annoyances rather than get sucked into the negatives.

Sure my life could be better and on bad days I feel like I'm a failure because I could have done more in my life but being me, I rather focus on the positives.

I have Ichthyosis but I don't care, I'm vain  Red face & red hair too, I don't care if it clash  Years ago people comment on my skin but now people comment on my hair. On way to work earlier, a stranger stopped me to tell me she loved my curly hair. Life is good  #ichthyosisawarenessmonth

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