I Know It’s Up for Me, If You Steal My Sunshine

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Skin care in the sun eh?  I bet you’re all thinking SUNCREAM right about now?  A lot more than that can and does go into taking care of your skin in the sun though.  I’d like to think this piece will be useful to everyone with different skin types, as well as my friends who have albinism too.  And also, I’ll take this chance to point out that this isn’t medical advise in any way, shape or form – its just a rambling piece about my thoughts on the topic and what has worked for me in the past.

It can be hard to take care of pale skin in the sun, especially when friends are sallow skinned and seem to tan instantly – which makes them want to spend days sitting in the sun even more.  In the past I’ve happily taken part in these sun sessions, but guess what happened? Burnt scalp, burnt arms, burnt ears etc.  And aside from the dangers of anything more sinister than sunburn blisters, it is really painful and uncomfortable.  So here are a few of my tips:

1.  Check the weather.

There are apps for this so you have NO excuse not to do it.  All during the summer months, I check the forecast every morning to check how intense the sun will be, if there are clouds due, and what times of the day that sunshine is expected.  If you have business to attend to during the day, you might decide to do it at a time when the sun is less intense or when it is overcast.  Above anything else, its helpful to plan an outfit – especially shoes!  Trust me, you do not want to be caught in a pair of cute flipflops when rain is pouring down on top of you!

2.  Choose your outfits wisely.

If I know it’ll be sunny on a particular day, I’ll plan to wear light clothes that will cover problem burn areas like shoulders or the upper back.  You can still look bright and feel comfortable in summer clothes even if you are a tad more covered than friends.  Shorts or strapless tops are a major no-no for me in the summer months, it is just too easy to get sunburned in those or to fail to apply suncream properly to these areas.  A lot of people say black should never be worn in the summer either as it attracts the sun, although I wonder is that a bit of an old wives tale!

3.  Suncream!

There is more to skin care in the sun than suncream, but it is a big part of keeping your skin healthy.  Its important to pick a suncream that will give you the right protection of course, but also one that you’ll be happy to wear too.  It’s pointless buying a suncream that is intensely heavy because you won’t want to wear it and it will be irritating to even apply.  Personally, I have always found the sun spray types best as they are much lighter than traditional suncreams, and as they have a spraying nozzle, they are also easier to apply.  Even the higher factor coverage in these sprays isn’t as gloopy as the typical sun creams are.  Just remember to constantly reapply every hour!

4.  Wear makeup if at all possible.  And sunglasses!

This probably sounds a bit over the top right?  But remember, most liquid foundations do have an SPF level within them.  And its a lot nicer to have makeup with sun protection covering your face, rather than applying suncream.  Keep in mind that the coverage in makeup isn’t that high though, and check your own foundation for its SPF level.  Remember to keep sunglasses around you at all time – especially in Ireland because you may never know when you need them!  Invest in a pair with good protection from the sun too – UV rays can and do damage eyes year after year, and so a pair of sunglasses with substantial protection are a worthy investment.

5.  Do your best to sit in the shade.

Simple but effective, and you would think it goes without saying, but that’s not always the case.  I always have to be reminded to sit in the shade!  If you’re in the park with friends who want to sunbath, try and sit near a tree or statue that can give you shade form the suns rays, while still allowing your friends to bask in the rays.

6.  Look out for moles and skin changes. 

I can’t stress this enough.  Moles that have recently changed shape or colour should always be observed by your GP, especially if they are in an area of your body which has been previously sunburned.  For more info on what type of changes to look for, click here – because I’m not a doctor and this is just an opinion piece and not medical advice in any way!

Hopefully, this piece will be useful not just to those with albinism, but also to anyone who is looking to protect their skin from the sun!  Anything you can add to this list of skin care in the sun?  Drop me a line through the blog page! In the meantime, check out this sunny selfie I took with a meerkat in Fota Wildlife Park on the Cork Rose tour recently – the meerkat didn’t really cooperate though!

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Iris Dances Around the Room

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Nystagmus – a mouthful of a word.  A condition I am still trying to understand.  But a condition which has effected me along with albinism since birth.  Medical and health professionals describe Nystagmus as “an involuntary, often rapid, movement of the eyes”.  This description will ring true for so many sufferers of nystagmus around the globe.

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There are a number of nicknames given to it; ‘dancing eyes’, ‘wobbly eyes’, ‘shivering eyes’, the list goes on and on.  For me, I personally used to call them “my shivery eyes”.  And I was really lucky because all throughout my schooling, my friends were used to it.  Once or twice we even used it to scare a stranger – my shakey eyes were my party piece if you like!  We used to have great fun with it.

It was in later life that I began to have a few issues with it.  Teachers would often remark that I ‘had a dreamy look’ while they taught me.  This seems to be a common complaint of educators of children and young adults with nystagmus – the lack of eye control and increased movement leads teachers to think you aren’t paying attention.  This is further compounded by additional sight issues if they ask you to go through what they have just written on the board – nine times out of ten you obviously cannot read it.

On a personal level, there are definitely things I find will exacerbate my nystagmus.  In general, most people tell me it isn’t very noticeable unless I am straining to focus on something.  But if I have been stressed out – exam time for example – the shaking gets far worse and becomes very noticeable to myself and others.  Similarly, if I have had a run of 2 or more nights where I haven’t had enough sleep, its a similar situation – more pronounced shaking.  The video below was recorded during a week where I was heavily reliant on my laptop – spending almost 5 to 8 hours finishing assignments.  All eyeball and eyelid movements you will see in this video are entirely involuntary.

This was definitely one of those times where it was at its worst.  But as I said, most of the time, those instances are few and far between.

So, have I described nystagmus correctly? And how do my readers find it affects them or their child/children?  I’m sure its not the same for us all.  For further information, check out the Nystagmus Network!

10 Things to Remember During Leaving Cert Season

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1.  For the love of God, STAY CALM!

Everyone will tell you this; your parents, the local priest, all your teachers, and especially your friends.  In fact, you may have friends that will brag about how calm they are.  Remember, this is a front they’re putting on.  Its near impossible to stay perfectly calm before you sit the Leaving – it is kind of a big deal.  But don’t let it take over your life.  At the end of the day, it’s a long exam over a few weeks in June.  Think of it that way, and don’t put the ‘college pressure’ on while your sitting it.

2.  Do not, under any circumstances, organise a ‘study group’ with friends. 

Harsh but true.  Study groups during school hours are okay, and some schools encourage students to study in groups during free periods.  But a group with anymore than three people will end in a gossip session about who wore what, or how last weekends rugby game went.  It’s even less productive when its a group of close friends.  If you do set up a study group, pick two different topics to cover over 90 minutes and take short breaks.

3.  Limit your procrastination.

Procrastinating over study will be a problem in your academic life forevermore.  And if you can find a way to avoid it, please let the rest of the world know!  It’s pointless advising you not to procrastinate, so why not procrastinate in a productive manner?  If you want to go shopping for something, make a list of household or personal items you need, and time yourself to see how fast you can get around the shop or department store.  Maybe a good use of procrastination time would be to clean out your room or wash the family pet?  Again, limit your time.  Even organising subject notes is a good use of procrastination!

4.  Eat well.

Study fuel is key during Leaving Cert season.  Fresh fruits, cereal, flavoured milk and smoothies are all study favourites, and for the most part they can be healthy too.  The key to study fuel is twofold; it must be tasty and it should be healthy and energising.  Avoid heavy meals and foods that encourage bloating like bread or a greasy bag of chips until after an exam.  You don’t want to be sitting in the hall trying to write about Shakespeare and growing a food baby at the same time!

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5.  Schedule some nap time.

There’s only so much study fuel you can consume during the weeks long study regime before you’ll start to burn out, so don’t forget to set aside some nap time during study time too.  The most productive naps are the ones that last between 10 and 20 minutes, so you can stay fresh and alert without getting too sleepy.

6.  Make up rhymes to remember tricky formulas or theorems. 

This is a great way to remember phrases or formulas for your Science, Maths or English papers.  The best thing to do is try and make a rhyme out of a short phrase, or better yet even sing information along to your favourite songs.  For example, if you want to remember the stages of mitosis, the phrase ‘I Party Monday And Tuesday’ is handy – Interphase, Prophase, Metaphase, Anaphase, Telophase.  You’ll be rhyming and learning in no time!

7.  Buy two of everything. 

Stocking up on study supplies is crucial for surviving the Leaving Cert.  Past Leaving Certee’s will tell you numerous stories about how they ran out of ink or how their calculator battery died half-way through an exam.  So make sure to have a well stocked pencil case, the Noah’s Arc of pencil cases if you will.  Two biro’s of each colour, two pencils, two erasers, two rulers, two compasses, and two calculators.

8.  Make plenty of flash cards.

Well-written flashcards are the saviour of any crammer in the run up to an exam.  Most people will use them to remember key points in all subjects, but a hidden trick is to devote some cards to themes you know will come up, and themes you can’t always remember correctly.  They will come in handy for younger siblings studying after you too, which earn you major brownie points with the parents.

9.  Pack your bag the night before.

This advice from the mouth of Irish Mammy’s all across the country, but to give them their due, its true.  There’s nothing worse than the mad rush the morning of a maths exam when you’re trying to find your pencil case or a calculator.  They were both on the table the night before and have now vanished – are there Borrower’s living in the house?!

10.  Be kind to yourself

Goes without saying really, doesn’t it?  You’re doing your best, be proud of it!

And remember…..

All this advice applies to studying when you’re in third level too!!

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The Rose Tour and The 5.30 News

That title is a little intriguing isn’t it? Its been a busy few weeks to say the least. But often, when I put my mind to something, I’ll end up doing it alongside another project too, another project that is a world away from the one I just started.  So here’s the lowdown. Some of you may know that I’m heavily involved with an Irish mental health charity, Suicide Aware.  They work to promote positive mental health in communities and organisations around the country, and they also offer counselling for those suffering from mental health difficulties.  I really believe in the work this charity does, and I’m a public advocate of mental health services and service users.  Which is why I was honoured when they asked if I would speak about my mental health story at a national level recently.  And instead of me waffling about it, watch it here instead.

Only two days after this broadcast, I found myself getting ready for a meeting of a different kind.  An information evening about the Cork Rose selection. A few months ago, this same fantastic charity had asked me to represent them in the Cork Rose Selection process which is taking place over the next few weeks.  It is an amazing opportunity for girls from all walks of life to come together for a meeting of minds, dresses, shoes and other things.  Whoever is selected to represent Cork as a Rose will also have the chance to represent this fine county in the Rose of Tralee Festival in August too.  So fingers crossed! I have been to two Rose Centre events already, and I can honestly say I feel my confidence growing with the passing of each event.  There is such a welcoming atmosphere in the air.  And the thing I am most of afraid of – being the different one – doesn’t cost anyone else a thought!  What better confidence booster than that?  That ‘feeling different doubt’, as I call it, follows me around everywhere I go, and has done since I was a teenager.  If I didn’t know any better, I’d nearly say that it’s a symptom of the albinism!  But I can truly say I’m feeling myself shake off that doubt every time I walk in to a room with these girls.  And long may it continue – well for the next few weeks it will anyway!11143487_476575165824448_4252663570901157107_n

The Do’s and Don’t’s of My Albinism

Some time late last year, I had the pleasure of meeting a fellow blogger, Tom Hickey, you can find his blog by clicking here.  We got to chat and share some of our experiences with each other, he being a fan of my blog, and I a fan of his.  While our impairments were different and perhaps limiting in their own ways, I feel we really understood where the other was coming from.  During our chat, we obviously shared ideas about future blog posts, and he suggested I write a “do’s and don’ts” guide, as I had mentioned a few times that certain stereotypes and ways people act around me can sometimes get to the point of being annoying, and sometimes hurtful.

So with that, I’d like to share with you all my personal* views of what I find, in my words, “what is ok, and what is completely not ok!”.  And before I go any further, I’d like to point out that this is a personal guide, something I’ve written from personal experience that I think others might find helpful to.  So here goes…

The Do’s:

  • Ask me about albinism, and my sight.  Of course, if you’re reading this blog, you will realise I’m very open about my vision and what albinism is.  And I’m happy to share this information with people any time they ask.  I’ll always be happy to do that.  The only way to raise awareness of any impairments and conditions are to be open and talk about them.  And in my experience, people always love to learn.
  • “Who does your hair? I want to go that colour”.  I absolutely love this question, and the follow-up of “how do you mean its your natural colour”?  I always maintain an upside to having albinism is the fact I’ll never have to shell out on a dye-job for my hair, and never worry about roots.  You have to take the good with the bad, right?
  • Offer some help.  This isn’t a patronising thing to do, from my point of view anyway.  If I’m in the local coffee shop in college and people ask if I need a hand bringing my drink to a table, I’m more than happy for that help.  It means I don’t have to try and navigate obstacles like bags and chair legs while I have a hot liquid in my hand.  Or if I’m getting a train and the staff offer to help me get on and off, it helps make sure I don’t get too lost.  If I’m ordering food at a carvery counter and the server calls out whats on the menu, it helps to make sure I get to know exactly whats on offer and help me to choose – this is a particularly tricky situation because a lot of restaurants will have their menu written in chalk – a big no-no for me to read.

The Don’t’s:

  • Stare.  How many times do I have to say this?  I feel like a broken record.  I’ve lost count of the amount of times people have walked towards me and stared into my face – now I don’t mean a stare that is normal human nature whenever you’re passing someone in a crowd and you notice their hair/coat/handbag, I mean a blatantly obvious “I wonder do her eyes move/can she see me” stare.  Above anything else its extremely rude, but it can be hurtful, especially if the person being stared at (in this case me) is having a bad day.  It’s a horrible feeling when people spend some of their time staring at you in the face, and its something I don’t really know how to handle, even now.  Depending on my mood, I’ve been known to stare back at people – which really freaks them out if I’ve got my cane in my hand!  But sometimes, I’ll just retreat to somewhere with less people around, sit quietly, and try to mull over what makes me so inherently different that people feel the need to stare and point.  Like the guy who is staring at me in the library right now as I write this blog post.  Irony eh?
  • “How many fingers am I holding up?” Irritation level 100.  In all fairness, why would you ask someone that, especially someone you probably don’t know that well – generally these are the people who will think its ok to play Doctor and ask me.  I’m open about my condition, as I’ve said above.  But this is a line I feel people shouldn’t cross.  And I’ll normally respond in a way befitting that.
  • Patronise.   This is probably a generational issue in Ireland, and not a case of people being rude or obnoxious.  And it isn’t something that annoys me as much as the previous two points.  What I mean by patronising is when a person, normally an older person, will say something to the effect of “isn’t it great that people like you can read/attend university/get around on your own”.  People who make these observations are usually someone I meet in passing, let’s say in a doctors waiting room or on a train.  These are the people who mean well by expressing their happiness that “someone like you” can be independent.  As I say, it isn’t a point that gets me as much as the other two, but its something to be mindful of because it can make you question how different you really are, and how people might see you differently.

To finish this blog, I’d like to ask again: what are your experiences?  What are your do’s and don’t’s of your own condition – be it vision impairment, hearing impairment, physical or mental health issues?  I found after speaking to Tom that we shared some do’s and don’t’s – but probably not all the ones I’ve listed here because everyone is different.  Looking forward to some replies!

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Don’t Let Pride Get in Your Way

Flash back to the end of August.  I’d had a pretty jam-packed summer; trips to Dunmore East, Liverpool and Inis Mór.  And now I was settling down to start my masters in Government, back in UCC.  So I’m out shopping for the typical college stuff (pens, papers, highlighters) when I get a phone call.  Its from the Irish Guide Dogs Centre and they’ve found a place for me on one of their Independent Living Courses.  The course is taking place for the entire following week so I accept my place, pack a bag, and take all kinds of gear with me as its a residential course.  Sounds like I did it without even a second thought, doesn’t it? Except there was a second thought, plenty of second thoughts.

Sometimes, I find it really intimidating to partake in some of the workshops/sessions/fun-days that are run for people like me with vision loss or blindness.  I find some courses to be a total box ticking exercise – its a case of “ah sure we’ll run that course now and we’ll be done then for the year”.  Depending on the organisation of some courses, you can go in waiting to feel empowered and then come out totally deflated.  This was definitely a fear I had and kept thinking about all the way out to the Guide Dogs Centre in Ballincollig.  I had all these reasons in my head why I didn’t need to go/why I shouldn’t go:

 

– I manage grand at home, I can do some things

– I don’t really need help from anyone else, I can sort it myself, why does everyone think I need heaps of help?

– If this is a box ticker in any way, I’m high tailing it out the door.

 

Well, what a surprise I got!

 

Arriving on a Monday, I was given most of the day to settle in and meet the others in the group, as well as the course instructors and the other staff.  Together, we all got a tour of the building, and got to grips with the facilities that were there for us to use during our stay.  Then one of our instructors explained the structure of the week to us, which basically consisted of us learning during the day, and making our own fun at night.  The course was open for us to do what we wanted with it.  So as a group, we all came to a consensus about what we wanted to cook for lunch and dinner that week, made a list of what ingredients we needed, and decided on some extra household related things we wanted to learn too.  So we decided on smoothies, lasagne, casserole, curry, wraps, pittas, banoffee pie, and brownies.

Now, the whole point isn’t to learn how to make these specific foods, its really to equip us with skills we can use to make all kinds of meals for ourselves, and by extension of that, to make ourselves more independent in a safe way.  We learned how to use our other senses to tell how well our food was cooked (sound, smell, touch), what foods or sauces we were using (smell, touch), how to layer foods (touch, sound), how to use particular appliances safely (touch, sound), and how to make sure our area was clean after we’d cooked without necessarily using sight.

While we did have our instructors with us the whole time we were in the kitchen, it was still a case of “you must cook this – no one else will cook it for you”.  And that is exactly the kind of Independent Living Course someone like me needs.  Its about empowering ME to do something and finish a job MY WAY, no matter how different it is as long as its safe.  It is so daunting at my age to realise that in the next year to three years, I’ll be living on my own, cooking on my own, cleaning on my own.  And its daunting because I’ll be the one in charge of me, I won’t always have my parents or my brother to fall back on.  And I know they must wonder about it, as do I, thinking “Will she manage?  Will she cope?”.  So for me. getting these kind of skills was massively important.  It doesn’t just benefit me, it benefits those around me too.

Pride is a good thing.  But pride could have put a stop to me going out to the centre and learning all these fantastic, new, and badly needed skills.  Pride could have stopped me meeting new friends and us all sharing our experiences with one another.  I’m so glad I took that particular leap of faith and didn’t let my hesitation or previous experiences stop me – I would have lost out on so much.  I can’t speak highly enough of the training and empowerment I got from this course, words could never describe it well enough  It taught me a lot about not letting pride stand in my way too.

 

If you would like to support the work of the Irish Guide Dogs For The Blind, or want to find out more about their services, please click here where you can donate through their webpage or search through the different types of courses run.

 

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That September Feeling

So, here we are. On the road back to education after a fun, hot, long summer… Well, at least my summer was!

That fear is starting to wash over me again, the fear I know a lot of others, both students and parents, will feel too. It’s a kind of strange apprehension isn’t it? That feeling of what might be facing you or your child this year, in terms of how their sight will affect their education and socializing this year.

“Have they cut his/her resource hours again?”
“What will the other kids think if I can’t recognize them?”
“I hope someone doesn’t ask me to read something off the board.”

I’ve dealt with That September Feeling every year since I was about 12. And it would be a lie to say you don’t feel it every year, but it does begin to bother you less and less every year. The worst that feeling ever was, was the year I went into Leaving Cert – absolute nightmare! Imagine what it was like to have the “points race” on top of the September Feeling?! It will send you a little crazy, it will send your kids a little crazy – it will drive your parents absolutely up the walls! … But isn’t that a parents job really? To over-think and over-worry about their kids? No matter their ability?

So what’s your story this September? Have you been suffering That September Feeling too?

My story is that I’m starting a masters in a few weeks time. You’d think after spending four years at an undergrad in a college where the Disability Support Service is second to none, I wouldn’t be apprehensive? You’d be so wrong to think that! Going in this September is just like starting again for me. There are new people, new lecturers, a new department and a new building. It’s like information overload for the girl who relies on her memory and not sight to get around.

I’m learning to combat my September Feeling though. For me, it’s all about organization really, organizing yourself and organizing the people around you that you depend on. I’ve planned my year in terms of how to study and when to study so I don’t tire out my eyes – if you suffer from a nystagmus like I do, study and time planning is unbelievably important! I’m also going in to meet with my lady in the DSS tomorrow too – again this comes around to organizing the help you’ll think you’ll need. Planning is such a good help to me when I’m trying to combat That September Feeling.

So, as I’ve asked before. How do you combat your September Feeling? Do you have That September Feeling this year? Let me know – I’d love some feedback on it!

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