Easter eggs and a dairy allergy?

Hola (take fourteen) Amigos!

Again, as freakin’ always, thank you so much for all your feedback. The medication blog definitely brought up different debates through email which I’m sure I’ll talk about at a later date. It’s lovely to hear different views on the same things – whether that be from parents, carers or the ones who suffer with PDA themselves (young or old)!

I haven’t blogged about my allergies in a while though and as Easter’s coming up I feel like this is the perfect time to.

Easter? Everyone loves it don’t they – an excuse to eat lots of fatty but yummy foods and for the children it’s an excuse for a break from school – just what everyone wants! But to someone with a dairy allergy or intolerance it can seem like a really frightful time.

Different family members are coming in and out of your comfort zone with chocolate eggs for all your family to enjoy. Except you. And it’s fine because you’re old enough to deal with it and you’re used to it and here have a teddy instead. But after 15 years of having a teddy it gets a bit boring doesn’t it?

It has to be said and credited that there are now so many more options for those who can’t have dairy in their diet. Chocolate is now much more common and you can even buy it from normal supermarkets such as Tescos! (A very exciting prospect for people like myself) And a few years ago we all crapped our pants with excitement when we saw our very own, first easter egg.  I still remember the excitement of having an actual easter egg rather than my usual chocolate bar. Recently it’s got even more exciting when you have a massive selection of 3 – plain, honeycomb or orange! This is more than enough for us! But, compared to the options of someone with a normal diet..is it really? When you fancy a chocolate bar it could be one of many – a Mars, a Crunchie, Dairy milk, or how about even a Snickers? And are Bounty’s really as bad as everyone makes out? For us if we fancy some chocolate – we have one option, one measly option of tescos own plain chocolate bar, unless we’ve had a pay rise this month and can afford a moo moo bar for atleast a fiver..unfair, when you can get 2 double the size for £1 at poundland isn’t it really?

It’s at this time of year when us allergy sufferers have to start being careful, everyone around you is tucking into some creamy chocolate and all you desperately want in this world is to sneak a mouthful of it in – but you have no choice..no choice at all. Instead you’re watching their every move..Where are they putting their hands? Has it touched anything of yours? Staring at the floor space where some chocolate has fallen – making a mental note of cleaning it up later. Not only this but you have your lovely old neighbour that is so sweet she buys you an easter egg and approaches you with it while you’re washing the car, how are you supposed to turn her down and explain your allergies? You just can’t bring yourself too. So instead for the fifth year running you take this lovely, posh easter egg inside, putting it on the table and shouting out ‘She’s done it again – easter egg on the side’ and even though you’re the one that takes her bins out and helps her clean her house, your family get the gorgeous looking deluxe easter egg don’t they? And life just seems as unfair as it can get.

To everyone who’s suffering with allergies this easter please go careful – It’s time to keep an extra eye out on who’s eating what and making sure to check ingredients when someone buys you an item of food – Never just eat it. But most of all, I hope you get that orange flavoured easter egg that you’ve been craving for the last 11 years and it tastes better than you could’ve imagined (because it better bloody do for £20!)

Say it now, it’s worth the chat, and most of the time people understand. Don’t keep it to yourself when your life is on the line. Please. Say something.

Thankyou.

Abigail J

x x x

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The skill of a mask..

Hola (take thirteen) Amigos!

My mocks are over! This week is one I already know will go well – regardless to the fact I’m in school. Anyway, another week, another blog. This one I want to focus mostly on the idea of a ‘mask’ – not a literal one but a psychological one that many – with or without autism – are able to put on and hold everything in until they get to a place that they feel completely safe and secure at, in my case this is home.

I’ve decided to write about this because it’s something that I have spoken about in recent emails to different people (if I have then I apologise as this blog will look very similar to those messages I sent to you) – whether they’re parents, carers or those who have autism themselves – I feel that it’s a very important topic and perhaps one that isn’t discussed enough.

Although I remember how extremely hard it was to cope with my PDA and the pure stress of demands in front of my friends it’s something I managed to do from a really young age. I started being aware of this in about year 1 – nursery and reception saw me following people around but being too shy to talk to them. Failing that I’d follow a teacher. But in year 1, I fully started to understand that I was different to others and of course my mum explained to me that I was unique and good at other things that they were perhaps not as good at – reassured me that being unique isn’t bad at all and in some cases is even a really good thing to be. However…

A big part of my PDA has always been the worry of judgment, I’ve always wanted to fit in, no matter how hard it was for me personally. But, give me a way and I would manage it, regardless of how uncomfortable I felt. But unfortunately I was known to unload on my mum when I came back home. I did this really badly when I was younger and I remember hating myself for putting my mum through everything but as soon as I came back from a stressful day it was something I could not help but do. I just saw it as all my mum’s fault and I would therefore be angry and say nasty things to her and feel so bad afterwards. I still feel like this now after a stressful day at school or wherever but now being much older I am able to control it, instead going up to my room and sleeping it off. I know if I stayed downstairs and let people annoy me for no particular reason I would end up shouting and regretting things I’d said. Sleeping is a massive relief agency for me and many other teenagers with PDA have related to me with this specific thing – if the day was hard, sleep it off. If I get home after any stressful situation I do tend to come home, put my pjs on and just fall asleep.

After a long, stressful day at school or out without my Mum, my family would get it in the neck when I came home. They all knew they’d done nothing wrong and deep down of course I knew that too. But this was the way I’d learned to deal with being ‘different’, being ‘unique’, being ‘abnormal.’ I simply put on a mask as I stepped out my house in the morning and didn’t put it back till I stepped back in in the evening. This was I was able to keep calm until I got home where I knew it’s okay for me to show my true colours – which of course is a good thing. When I did that, everything my Mum did was wrong – I couldn’t deal with it and did take it out nastily on her, something I still regret to this day – never violent with actions but violent with words, which I think is just as bad, if not worse.

For me though, even now, putting on a mask and a front for others is a skill I’m so happy to have as it means I’m able to get on with life completely normally until I’m home where I can relax and sleep it off.  I know it’s a horrible thought, not being able to be yourself to your ‘friends’ and maybe even distant family, but this is the way I found helped me live the most ‘normal’ life possible and one skill I’m glad I learnt on the way to growing up to the girl I am today.

Many doctors/psychiatrists/professionals (you know all those people that children hate and parents want to argue with) all say that you should try and get your child to be their true self, no matter where they are – it’ll be better this way, right? – They give you technique after technique to try and break down this wall that your child (or you) have built up themselves so they are able to be who they want to be when they leave the house, even though this sometimes means being a complete different person with a complete different persona. The only advice I can offer here is from a 15 year old that’s grown up with PDA herself, I can’t give you a parent/carers/professionals point of view but maybe this is the most important one you can get because it’s from someone who knows just what your child feels like. No matter what the professionals say, let your child keep that mask up aslong as it comes back off when they are comfortable at home. They will never describe it as a ‘skill’ and I’m sure the idea of your child growing up being uncomfortable to be themselves when out the house will break your heart, but they will be so grateful to have that when they’re older – and it just might be the way that your child lives a ‘normal’ life.

As always, feel free to email me, I’m happy to answer any queries and will hopefully keep on top of emails and this blog now my mocks are over for a while.

Thankyou, again.

Abigail J

x x x

One of them days..

Hola (take twelve) Amigos!

Two posts in one day, I’d love to say it’s because I’ve sat here and typed two blogs up but the truth is..I did the medication post the other day and for some reason didn’t press publish – nice one abs. That move probably  sums up how today went, because the only way to explain it is ‘one of those days.’

As much as I hate talking about PDA and to me it’s always been a burden, an embarrassment and something I hide away from (which I know is completely wrong – hence, why I set up this blog) writing to you all is really helping me learn how to open up, and now I feel I can 100% say, this day was so crap because of this stupid autism I am forced to deal with daily. To ones who have it, you will completely relate. To those who don’t, demands get too much and I need a break before I make myself even more mentally and physically sick.

I went into these mocks feeling confident enough within myself and knowing I was able to do alright and to be honest, I knew it wouldn’t make any difference to my life. But now after a fortnight of sitting them everytime I try and remind myself that I just feel like I’m kidding myself. Being sat in a silenced exam hall for two weeks, each day including several hours of watching the clock, and waiting for seconds to turn to minutes – I can eventually say I have had enough. Almost an achievement though because it’s only for the last three days of mocks that I’m going to struggle particularly bad.

The problem is, we’re told what we need to do every single examination because they have to do that, and I get that, and to any ‘normal’ person it just causes a slight bit of annoyance – for me? A whole load of anxiety that not many understand. I feel like it’s a constance fight inside myself to listen to the same bloody woman saying in her whiney voice “Use black ink, no food allowed, only water is drinkable in here, in a clear bottle with the label off” And it rings and rings and rings in my head non stop. It’s stupid because I can read that sentence and just laugh at myself that something as silly and insignificant as that can affect me so bad. But when I get stressed out in these exams, I get stressed out for the rest of the day. Every little thing that someone says, annoys me. I don’t seem to get on with anyone and to know in 2 hours I’m going to be back in that exam hall actually seems to kill me.

When everyone comes out of the exam, you can all guess what the first conversation everyone pipes up about, of course it’s “How did you find that? What did you get for question 3b?” And in all honesty I didn’t find it that bad, because for me the exam is the easy bit..it’s the talk at the start and end that leaves me with undeniable stress.

Although, my PDA never seemed to affect me as much after the initial growing up demands that everyone learns, I guess in the very recent years it has got worse because at 15-18 you’re being told a lot of demands and requirements, while sitting through a lot of stressful exams and times in your life.

My mum is also piling on the pressure for revision – which is something I thought she’d never do. I never imagined her as one to make me revise for certain hours a night. Why? Because she never did that to my brother or sister. Now though, after the stressful, unnerving demands at school to come home and be told ‘What you revising now?” “One hour isn’t enough really” just keeps taking my anxiety to levels off the scale. And when I get stressed out with my PDA and feel mentally unwell, I sleep, go to my bed at 4pm (when I get home from school), surround myself in darkness and just sleep until I wake up around three hours later with a reduced stressed head. Which is exactly what I did today, but then to wake up at around 7 and be told to eat dinner and then revise, lets just say, it didn’t help the situation whatsoever – especially, when it’s chemistry – and chemistry I do not get at all.

Sorry about this rambling blog, I really needed to get it out and to sum it up, those with PDA are more likely to understand my messed up head right now and how it feels. If you do want any help dealing with it or you just wanted to ask some questions, I am sure able to be your guinea pig so please email me – absbh101@gmail.com.

Again, thank you.

Abigail J

x x x

Medication..Do I? Don’t I?

Hola (take eleven) Amigos!

One more week of mocks and I can’t wait! Only 4 more to go now, although them being in my worst subjects – Chemistry, maths, physics and catering – doesn’t reassure me! Wanting Friday to come so quick.

Although, having said that, last week I did keep my stress levels down and it ended up being not too bad.

However, somethings come up this week that I’d like to talk to you all about.

Medication.

Do we want to take it? No.

Should we take it? Yes.

Years ago when I was 10ish, I was  on medication for my anxiety and although I didn’t know at the time, one side effect was weight gain – by year 6 I was starting to feel massive and embarrassed, thinking it was because of my eating I tried to stop but my hunger was too much with an increased appetite effect aswell. Looking back now to my late primary/early high school photos I am still embarrassed of how big I was but it’s something that I now find myself coming to terms with and starting to understand, it’s something that’s in the past and I am now almost happy with my weight and figure.

I am currently on 200ml of sertraline, an anti – depressant, but I am on it to try and reduce anxiety and not for the depression side of it. When I first went on it the side effects hit me really bad; I was ill most mornings and I didn’t get to sleep until 6am for the first couple of days which meant I had to miss school due to pure tiredness. It also made me struggle so much more in myself, I started having suicidal thoughts which wasn’t a usual thing for me and there was times I found myself so low I was wondering how I could kill myself by breaking my mirror and stabbing myself with the pieces – this broke me and I honestly felt at my weakest. Eventually, after talking to my psychiatrist she persuaded me to come around and tell my parents..however, I perhaps didn’t do this in the right way – rather than sitting them down and telling them properly, I shouted it out in an argument and it left my parents very concerned. But none of this made my psychiatrist make the decision to take me off the pills, instead she upped the dose until it was the most I could have at someone my age and weight. She said ‘aw it’s normal to face these side effects at the start’ but all I could think was how is it normal for a 15 year old girl to be questioning how to kill herself ?When most are questioning which guy to ask out next? Why me? What did I do? And I suddenly started to feel isolated and really down within myself.

However, this seemed to ware off after the first few weeks with some perseverance and a few days off to myself – which included films, tucked up in my own bed and lots of comfort food. I soon started to assess what I wanted to achieve in life – this gave me short term aims which within gave me my long term goals, at last I was able to start acting like myself again. Unbeknown to me, my family started seeing their ‘little girl’ turn back to her witty normal self, but jeez it took a long time and I hated the process.

Now though, I see a massive difference in myself. Of course It might be just because of the tablets or  it might not be and maybe my new physiatrist worked just the way I needed her to, but aswell it could’ve been a balance of both. However, it’s now that I’m at my happiest – Of course not as happy as others my age but this is a really positive time for me. The only thing left for me to do is get off this medication or atleast start to lower the amount. It’s always been a massive deal to me to be able to reach happiness without chemicals changing my brain but recently I have come to realise that perhaps it doesn’t matter – that perhaps even if I have to take these for the rest of my life, I will live happy and so much more confident and maybe, just maybe that in itself is worth it.

So when/if any of you get offered medication, I beg you, I beg, beg, beg you, to take them up on the offer, although some might work and changes might have to be made, it will normally benefit you in the long run. I understand psychiatrists can seem like the devil because they make you speak when you really don’t want to – but when it comes to medication, they usually can pick out the right ones for you and if it means happiness in the long term..suicidal thoughts and anxiety out the window..is that not worth it?

I know today was a bit of a deep one but it’s something that I’ve been asked about in a few emails and one that’s playing on my mind – sometimes you have to do what is asked of you..sometimes the way those chemicals ‘mess’ with your brain, actually end up ‘fixing’ your brain. Please atleast try, because no one wants you to quit this earth too early, not when you have an amazing life infront of you, that you have to stay around to see.

And trust me I understand, as all I want to do is find happiness without medication but perhaps for now that’s not possible.

absbh101@gmail.com – my email is always available.

Thankyou!

Abigail J

x x x