Sunday, 26 March 2017

Sunday Stories | Lorna's Autism Story

Sunday stories is a series on my blog where every week a different person talks about their condition (whether it be physical, mental etc.), shares their story and raise awareness. For the past 5 years I've used my blog as a space where I could do just that but I wanted to extend things even further to allow others to talk and raise awareness of their conditions. I'm really excited to introduce everyone to you! Today the Lorna is sharing her story and journey with Autism, I'll pass things on to her!

Can you tell us a bit about your condition and how you were diagnosed?

Autism is a spectrum disorder centring around social and communication skills.  They say it’s more common in males but I think, based on experience and research, that it’s just more difficult to diagnose in females. We are born with it, often noticed in early childhood, and it has no cure however it can improve with age.
My mother noticed something was different about me when I was a baby, but because she was a first time mother she shrugged it off until I was a toddler. I wouldn’t do eye contact. I would very rarely cry for comfort cuddles, or cry at all. As I got older, the symptoms became more obvious. I wouldn’t interact with people at nursery/school willingly and I had huge difficulty connecting with people. I was “smarter”. I developed anxiety at a very young age. I was easily overwhelmed. I was having “tantrums”, later on recognised as meltdowns. I was very peculiar about the way I did things. The list goes on.
It took a long time for a diagnosis but it eventually happened when I was 10/11, halfway through my first year of secondary school. I was transferred to another school with an autism centre to help me with mainstream schooling. It involved a speech and language therapist and an awful lot of tests that I can’t completely remember because it was ten years ago now (oh God).

How does your condition affect you on a daily basis?

I developed bad social anxiety and general anxiety disorders. I don’t really think I need to talk about anxiety because of how many, unfortunately, have to live with it in their day to day life but it makes me sick, gives me sleepless nights and can push me to meltdowns/breakdowns once every week or two (and, in good time periods, once every month or so).

I can’t really bond/connect with people on any deep level. It’s like I am wrapped up in bubble wrap, and I see everyone else touching skin to skin and waves of electric pass between the two as something is shared but with me there is a barrier. I touch and there is nothing. It’s not that I’m disconnected, I’m not without emotion and a common misconception is that we hurt others and we feel nothing. Autistic people can be highly oversensitive, but I’ll get to that in just a second. It’s just simply a barrier to stop me from connecting. I can get close to people and I can get attached to people, but there is no “electric currents” as I call them.
I am oversensitive because of the autism. It often burns when people touch my skin. I hear things stronger, see things stronger and taste things stronger. The worst is that I feel stronger. I love more passionately, I hurt strongly. A nasty comment will still stab my heart six months after it was said. I am easily overwhelmed and usually don’t leave the house for longer than an hour and rarely on my own. Too much noise, too many bright lights, too many people. It’s all painful and makes me want to sit down, scream and cry. Of course, I don’t, but I definitely try to leave those situations as fast as I can.
My tone of voice is often too quiet. I make inappropriate jokes and sarcasm because I am absorbing what I see and hear around me and sometimes I get it wrong and put the wrong words in the wrong situation. I’m often expressionless and monotone when the situation requires me to be otherwise and it hurts people because they don’t understand. I come across as insensitive when I am the complete opposite to insensitive. It takes me twice as long to process what you just said than someone who doesn’t have issues with their communication as even though I can speak English it feels like I don’t sometimes.

I have self-enforced “rules”. I only shower within certain times, only eat within certain times, I only eat certain foods done in a certain way, I sleep in a certain way, etc. People who live with me get annoyed as if they have to change the routine, I get uncomfortable and it peaks my anxiety and my “meltdowns” these days are often just tears and explosions of anger.

People can often be my biggest challenge to come across, though. The most recent comments I have received that still hurt have been “What kind of man could love someone who is autistic?” (implying we are unlovable/freaks) and, when I see professionals for anxiety/depression, I am often replied back with “Well, you’re autistic, it comes with the diagnosis…we can’t help you” (what am I meant to do, then?). When I tell people I’m autistic, I get weird looks or I get treated differently, like I’m an outcast. People talk about us like we are some sort of deformed breed of monsters that live in caves and only come out to hurt you or say stupid things. People can be really nasty, and it’s almost socially acceptable to be nasty towards us because we are not seen as people.

Do you have any tips for someone who is newly diagnosed?

It’s lonely. You’re going to go through bullying and trauma, more than likely, if you haven’t already. You will be hit with anxiety and depression. The world will not be entirely accepting of you. In many areas, you will be an outcast, but it’s okay because the autistic community will always welcome you in with open arms and for every storm that passes your way, you will encounter a rainbow. Turn your pain into something beautiful. Also, don’t listen to Autism Speaks. You do not need to be cured. There are plenty of other services to help autistic people but please don’t go to them.

What is one thing you would like people to remember about your condition?

We are people and we are human. Every heart beats as one, in the end. We are different but we’re not all that different from you. We hurt, we fear, we dream, we think, we feel. We’re not outcasts, we are not zoo animals for you to stare at and we are not here to inspire you or for you to think “Thank god I’m not them”. We are wonderful, autism and all. And please don’t tell any one of us “You’re autistic? Really? You don’t look autistic!”.

You can follow Lorna on Twitter and she also has her own blog, Cranky Autistic, take a look!

Saturday, 25 March 2017

A Little Bit Of Hope

For the past month or so I've been very much out of touch with the blogging and social media world and in fact, just life in general. I've been ill several times and kind of just jumping from one doctors appointment to another, I've just been existing. I've also been thinking a lot about my future and what it might look like if I don't receive any help in terms of my chronic pain due to the Tarlov Cyst in my sacrum. I went down south to visit my family not long ago and I discussed this a lot with my Mum and I just felt the need to try and do as much as I can to change my situation myself and I'm not talking changing my diet and exercising. I feel like my life has been dictated my other people's opinions for so long, namely my spinal surgeon's opinions, a person not really qualified to be looking over the care of this aspect of my health.

Now, there isn't much I can do myself but what I can do is email doctors with knowledge in the area that my problems come under, or someone with a wider knowledge of Marfan Syndrome. I had a few people in mind when I was thinking about this and one of those people is Dr Alan Hakim who is the Chief Medical Advisor at HMSA, the charity that I volunteer for. I knew that he had a decent knowledge of Marfan and chronic pain and I knew that his work in hypermobility syndromes would mean that he would have at least heard of Tarlov Cysts and what affect they can have on the body.

I sent off an email and I was so shocked and overwhelmed when he replied within just 15 minutes, stating that he was willing to speak to me over the phone to discuss things further. He said he had 'a few thoughts' about my case and that alone is the most hope I have been given in a long while. I then spoke with him yesterday on the phone and he gave me a lot of good advice and has even written a letter for me to give to my GP so he can get the ball rolling.

Ever since I found out about the large and frankly unwelcome cyst sitting in my sacrum there was been one surgeon's name that keeps coming up again and again, Dr Casey. Ever since then the goal has always been to get to see him as he's highly regarded as the best person to operate on these cysts in the UK, however I've always been under the impression that he only performs this surgery privately, not on the NHS. It does now seem though that I might be able to be referred to his team but first I need to go through my regional services. I might be offered something through a neurosurgeon I see locally, such as draining the cyst, but these procedures don't have a high success rate and often the cyst just returns so it's more likely that I will be referred to Dr Casey in London after that. I basically just need to jump through the hoops to get where I need to be but at this point I really don't mind as this is the closest I've ever been to treatment or surgery before. Last year Stanmore, who look over most of my skeletal care, point blank denied operating on me without even considering my pain and it's impact in a benefit-risk assessment and we're hoping that a local neurosurgeon and Dr Casey will consider such issues this time around.

So, in reality I'm not that much further ahead and I won't be until I get referred to a local neurosurgeon but I have hope which I think is the important thing. Yes, I might still get denied surgery but at least I'll be under the right person and I'll have the ability to explain things myself instead of information being passed along second hand from my spinal surgeon. Most people would probably find it odd that I'm so desperate to have another surgery, I've had 3 so far, but honestly if you were in my position you'd be begging for them to do something, anything. Laying down all day, leaving the house once a week, being stuck in one room for most of the day. That's not the life I want for another year, let alone my whole life.

Wednesday, 15 March 2017

My Disability Defines Me & That's Okay

'Don't let your disability define you.'

I can't tell you how often I hear this, whether it's said directly to me or it's just a general comment made on Twitter. Disabled people are forever being told not to let our disabilities define us or take over our lives, ever since my health got worse I've constantly had this message thrown at me. You know what though? My disability does define me. It has an impact on every part of my life and I embrace it as much as I can, it really does define me and that's okay.

I'm sick of people, especially able bodied people, telling me that my disability shouldn't define me, that I'm so much more than that. And yes, I am so much more than it but it's the biggest part of my life and it would be difficult for it not to be. I have hospital appointments every week, I take a large amount of medication daily and I'm constantly in pain which means that my disability defines every part of my life. It gets to decide whether I can get out of bed and whether I can leave the house, just to name a few examples.

I'm not ashamed of the fact that my disability defines me because it's helped me to achieve so many things. I've talked about the issues myself and others face on my blog, I've written for other websites and publications about it, I've gained charity work from it etc. That doesn't sound bad to me! I've never seen my disability defining me as a bad thing and I'm sick of people giving out this message that it is bad.

My life revolves around my disability and not always in a bad way either. Of course it means I go to a lot of hospital appointments which means I sometimes miss out on things but it's not all bad. I've worked with charities like The British Heart Foundation and The Hypermobility Syndromes Association, educated a lot of people on disability issues and ableism and raised awareness of my own condition, Marfan Syndrome. My disability defining me has helped me to do these things, it's my unique selling point if you like.

So, if you're disabled and it defines you, your personality and your life: don't feel bad. Embrace it and ignore anyone who tells you that you shouldn't be defined by it, it's your life and your disability. Make your own rules.
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