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

Thursday, 24 April 2014

Feeling so unsettled....

Lately I've been feeling so unsettled and it took a while to work out why. On my rides to the local park, I like to stop somewhere there to sit and think.

Eventually I knew why but didn't know what to do. Sometime I wish my life is so simple and easy so I don't have to make hard decisions. Sometime it's hard to make decisions because I don't know whether to listen to my head or my heart..... Be sensible or spontaneous.

I know my health is part of my reasons why I'm unable to make decisions easily. Also I sometime find it hard to make decisions because I am not always in control of my life.

What I would love to do is to drop everything and just leave, travel for years but I can't do that for now. I have to attend hospitals. Maybe you think that is excuses, a part of me think it's just excuses but it is not that simple. I never know when I need to rest or need help with my health. I KNOW if I've perfect health then it would be easy, I would just drop everything and go.

I feel unsettled and don't have control over my life basically because hospitals control my life, keep me waiting in waiting rooms for ages leaving me do everything later than everyone such as travelling. I wanted to go to travelling when I was more younger than now. So I'm playing catch ups with my life and I don't like that really. I am not at where I wanted to be at my age. And hospitals taking ages to make appointments such as pain management - I don't even have regular appointments, I only had two so far - so I feel I can't make plans for my future if I don't have pain management appointments basically how the heck am I supposed to carry on with my life if I don't have suitable medication / pain management. But that's life and I am trying to carry on with my life.

As some of you know I've been wearing my hearing aid since last year but that has bought something new to me. I realised I was missing wearing cochlear implant - even though I didn't have it for long - and it got me thinking for ages about it. I was thinking where would I be now if my body didn't reject it. Or what would have happen if I had the go ahead to have another cochlear implant. It's not easy to make the decision based on my medical history and experiences in the past, so a referral to the implant centre is needed to talk about what happened in the past and what could happen if I had another one.

I don't always like routines and do get the itch to do something out of the blue or something crazy. Another reason why I can't make decisions easily. I can be very annoying. But then I think having routines is easy if I want to feel settled in my life!

I know if/when I am done with my travelling, I will want to commit to a new job with longer contract, and learn to drive because then I will be able to commit to stay in a place for a while. Probably my home-town. Settle & commit in a relationship. Make my home more homely, wherever that is!

I am only 26 - I never feel that, always older - yet some people are surprised to hear I am not in a committed relationship and don't have children. I don't even want kids but prepared to accept it that I might change my minds in the future though. I even don't want to marry but again might change my mind in the future haha. Having fun dating and I know it's pointless to commit to a relationship when I don't even know what's happening in my life and don't know what I want to do :) That is called being sensible :)

Sometime I wish I wasn't sensible and mature for my age.

So how do the heck do people make decisions?! I never will understand how I have made it so far in my life :) I hate the 'what ifs' but I do often think about it, annoying I know.

Could someone invent a time machine so I could jump in the past and be a child so I could be care free for a bit. But then I don't want to go back in the past because I am more stronger now.

As my life changes all the time, I might be saying different things in few months or few years, who know! :)
Bye for now :)

Wednesday, 12 February 2014

The start of a new year...

So, 2014 is here and it's already February. Slow down!! :) 
It's true what they say, time flies so fast when you are having so much fun!

As usual, there's good and bad things in my life. 

I was slowly getting on with my life after the death of my beautiful strong Granny Gorman back in October 13 when I was in Australia. After I got told about her death, when I got home, I found it so hard to carry on with my life after that. I felt so guilty about being so happy and having fun in Australia as I was posting a lot of photos on my Facebook and updated my statues daily about my experiences. No one said anything on Facebook or contacted me because they wanted me to have fun as it was a once in a lifetime opportunity. A part of me understood why but I still wanted to know. I felt bad about not saying goodbye as I missed her funeral so I hope she understood. Love her so much and I will never forget our trips to Blackpool, the highlight of my childhood.

So, in late November & early December I started booking for my another dream trip to Thailand.

Planned a surprise meal and party for my mum's 50th in January, with a lot of help! A great night!

Flew to Thailand in middle of January after my mum's 50th birthday and kept checking in with my mum to see if everything were okay. Despite that, I had a great time and gained many awesome experiences I will never have in UK - more details coming up in my travel blog.

But during my trip, there were a lot of long travelling - worth it! During the long travelling my friends had music & books. Watching them listening to music on long journeys has made me sad because I've missed listening to music using my hearing aid and iPhone. Been unable to hear out of my hearing aid since Christmas Eve. Few appointments coming up about my hearing aid. Oh how much my life has changed, I used to be happier with just feeling the beats of music but not now, I NEED to be able to hear and feel the music!

Brilliant 3 weeks in Thailand but wasn't happy about coming home. I never do when I go travelling! But my body was knackered and wanted to come home. One day in the last week I woke up unable to walk. I was horrified and didn't know why. Walking was so painful, so I decided to stay longer at the resort in Koh Phangan to rest. It didn't really help, I was so mad because I wanted to travel more. I then flew to Bangkok few days before my flights to home. That night, I went out for dinner and drinks with friends. It got more painful to carry on I was sad as I wanted to enjoy partying before going home. 

The next morning I rested a lots before going out for food and markets in the afternoon.

By the time I arrived at Bangkok airport I was struggling to walk, staff there arranged wheelchairs for me and picked good seats for me. I was happy about that!! 

This blogger is addicted to tattoos and piercings so I got my belly button pierced whilst in Thailand and got another tattoo after Thailand!

Now it's 12th February I am home and resting my foot. It's killing me because I want to get back to work, gym and doing my usual things! I will never regret anything I've done though :)

Sunday, 5 January 2014

2013, a big year!

I can say 2013 is one of unforgettable years!

2013 was both good and bad year but to be honest, it was a big year for me too. All these few simple things that have happened but built up to be a big year for me. So when I look back on 2013 I still can't believe what has had happened.

Sad thing, is that few deaths has had happened but that is life. No one like bad things happening in their lives but it do. It's reality, sadly. It has been a hard year but we all have to plaster a fake smile on till we smile for the real and carry on with our lives. And too many hospital appointments, feeling so old at the age of 26 years old due to my conditions. Reacting to the drip for pain relief when in hospital and realising that I won't have great painkillers that actually work for a while. Trying out new painkillers and it can be pain in the ass suffering from side effects.

Early March, wee Marley or 'Marley Moo' was born but we didn't know it until April my brother and I decided to buy our mum a wee Shih Tzu puppy, Marley, and found him online. Of course we drove miles, and miles to have a look at Shih Tzu puppies and picked one out. Named him Marley. He was 7 weeks old but now a cheeky 10 months old puppy who love cuddles! He brings many happiness to our lives but also bring a lots of laughs which are needed.

Can't forget me having an interview with Sue Ramsey MLA in April. It was held in Storment, Belfast. I am proud about it because I knew it was useful to raise awareness about the importance of deaf awareness.

In late May till early June, I made one of my dream trips happen and flew to New York. Many goosebumps and unforgettable moments during my New York trip. I ate delicious pizza and got lost many times when taking subways. Not coping with the heatwave in May! Bought lovely colourful clothes and unique presents for family. I then knew I HAD to explore the rest of the world.

Being crazy daredevil, I wanted to do more for charities and if doing crazy things meant raising more monies for charities then I'll do it. So having done a bungee jump for 'Cash for Kids' in 2012 I decided to do an abseil for them again, in July. I'm pleased to have done it and raised monies for them.

Due to me having a rare skin condition I've always thought I couldn't have tattoos. I even asked many specialists about possible tattoos and they all advised me to not to have tattoos. Of course, typical of me I didn't listen to them. I went ahead and got one tattoo in August before my birthday and another one in November when I got back from Australia. I'm pleased to say nothing has happened to my tattoos. It's a shock really, but the problem is that now I am addicted to tattoos!

In September, I took a course in Prepare to Teach level 3 it was a big moment in my life because it got me thinking about a possible fitness career if my health is still okay in the future and the course is useful for me to teach people about fitness if it got that far. I then got excited imagining my future but was careful not to get my hopes up. I then realised I was thinking about my future because for years and years I couldn't plan ahead due to me being in hospital and knowing things will always stop me from achieve my plans.

In October, I made one of my major dreams to come true and that was going to Australia! The flights were so long and sometime the heat were unbearable but man, I will always be grateful for being able to go to Australia. I actually thought it couldn't happen but then started to realised in the last few years that it was possible as I refused to have more operations and could start living my life if I didn't have any more operations for a while. It ended up being a great month, I could cry with happiness that I had a great time and actually have been to Australia. I made few more dreams come true when I was in Australia. It was just few simple small dreams but I made them happen. One of them was to pat a kangaroo! 

Other moments I can't forget are being able to use a hearing aid and actually hear music! Buying ear link specially for my hearing aid so I could listen to music on my iPhone just like other people. And being told that I can go ahead and learn to drive. That was a huge thing for me seeing I've got a rare condition that affects my eyes and was told I am not allowed to drive for years and years then suddenly at the age of 26 years old I got told I am allowed now as my eyes are good at the moment. I don't want to learn to drive now seeing I rather spend my money on travels but hoping my eyes will behave in the future for me to be able to still learn to drive!

Many plans for 2014 and 2015, hope it will be good for all of my family, friends and me! :)