Sunday, 2 April 2017

Sunday Stories | Evie's EDS 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 Evie is sharing her story and journey with EDS, I'll hand things over to her!

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

I have Ehlers Danlos Syndrome (amongst other diagnoses) but EDS is my primary issue. I was interning for a paper in 2012 when I interviewed a girl with EDS. Something stuck with me after speaking to her and I became widely passionate about raising awareness of EDS. A year later I did a follow up story and when I was telling this woman about my own health issues she asked me one question that changed my life forever “Are you hypermobile?” At that point I was 26 years old and as far as I was aware, I was stiff as a board. Low and behold I scored 8/9 on the hypermobility scale and the rest is history.

How does your condition affect you on a daily basis?
I am in pain every single day. If I’m not in pain I’m fatigued or feeling awful because of my Postural Orthostatic Tachycardia Syndrome. There is always something wrong with me.

Do you have any tips for someone who is newly diagnosed?
Get yourself a good GP who’s interested in learning and helping you. Doctors with egos are no help at all. Get an EDS aware physio to give you an exercise plan, strength training can help a great deal. Learn to pace yourself and don’t give up when you’re exhausted, sit down before you get to the point of exhaustion. Take note of how many things you can do while you’re still feeling OK.

What is one thing you would like people to remember about your condition?
It’s multi systemic so everything system in the body is affected. It’s not just a joint issue. Also, there is no cure and no amount of dieting or homeopathy is going to change that. 

You can follow Evie on Twitter, Facebook, Instagram and Pinterest. You can find support and more information about all the types of EDS on the Hypermobility Syndromes Association website and the Ehlers Danlos UK website.

Friday, 31 March 2017

The Honest Reality Of Having Marfan Syndrome

This is a post that I wrote weeks ago, just after Marfan Awareness Month and the irony is that I've not been able to post it because of my health and Marfan. March has been a truly awful month and I've had many more bad days than good ones. Today is the first time I've gotten out of bed and dressed all week and each week throughout March I've had several days at least where I've been unable to move from my bed. So, I thought now was a pretty good time to post such a raw and honest post. This month has been a big reality check for me and I've had to recognise just how bad my health is right now and I'm even less honest on social media about my life. So, here we go.

During Marfan Awareness Month in February I talked a lot about my story and experiences of treatments, surgeries etc but I felt it was important to also share the side of this condition that I often don't talk about. I'm very guilty of painting on a smile, encouraging positivity or just downright ignoring issues but life isn't always easy and I think sometimes I've come across braver than I am and made my surgeries and even just my daily life look a lot easier than they are. It's taken me a while to decide whether to do this post but I feel like it's time to be open about life, especially this past year. Some amazing things have happened but between that there has been a lot of pain, tears and feelings of hopelessness. Basically, having a condition like Marfan can be really tough sometimes.

Of course going through 2 spinal surgeries and a hip replacement was tough but it was last year's 2 lots of bad news that hit me hard. After over a year of chronic back pain so severe that I was using a wheelchair I finally received a reason as to why it had happened. We had always assumed that it was related to my spinal surgeries so to find out that in fact it was a whole separate problem was a bit of a shock. I received a diagnosis of having a tarlov cyst in my sacrum, it's a kind of cyst that grows out of a nerve root along your spine and then fills with spinal fluid. At first I didn't know much about it so went away, did some research but didn't worry too much until my next appointment, I guess I just assumed that a diagnosis meant a guaranteed treatment. That definitely wasn't the case though because at my next appointment I was hit with the very heavy news that despite the fact that the cyst was eroding away my sacrum, leaving me at risk of fracturing it, there was in fact nothing they could do. There was a surgery avaiable but it carries big neurological risks and after a meeting between various surgeons they had decided that chronic pain leading to the use of a powerchair was not enough to warrant such a big operation. My whole life had been put on hold at this point due to the pain and so it was devastating to find out that they weren't going to do anything. I felt so hopeless and like life was never going to get better, it was a pretty scary time and to be honest, it still is.

My mind was then distracted by more bad news at a cardiology appointment soon after all this had unfolded. My heart problems had finally reached the point where the words 'surgery' and 'operation' were starting to be used. My cardiologist gave me information that my previous hospital had withheld from me because of my age resulting in quite the shock for me to find out just how bad my heart was. She predicts that I'll need major open heart surgery in my early twenties, I had always assumed I wouldn't need such surgery until I hit my 30s or even my 40s so it was a surprise to say the least. I went back and forth between 'it's not a big deal' and panicking quite a lot for weeks and even now it's something I'm having to get used to. My next appointment is in June and I'd be lying if I said I wasn't worried about the outcome of that.

There's the everyday feelings as well though and the physical symptoms that limit my life. I wake up and I'm in pain, I go to sleep and I'm in pain. It's an exhausting pattern and even more exhausting not getting a break, add in all my other symptoms like fatigue, joint dislocations, migraines and more and there isn't much time left in the day for me to breathe let alone get anything done. It's been tough keeping up with blogging over the past year because of this and you can tell by how little I've been posting compared to previous years, my ability to sit up comfortably has had the most influence on this and it's so frustrating. This is most annoying when it comes to getting around in my powerchair though, it's great that I have a way to get around but I cannot even sit up for very long in my chair without the pain becoming severe. Whenever I go back down south to see family or head to London for appointments and charity work I end up close to tears just an hour into the train journey. I used to want to be able to continue my education like everyone else or work like everyone else but these days I just want to be able to sit up for half an hour pain free. As it is I spend most of my day laying on my bed but days where I cannot move from my bed, except to use the bathroom, have been becoming much more common. I'm at the point now where blogging, the one thing I've always been able to do, is becoming challenging and near on impossible some days. I'm quite hard on myself when it comes to this and I'm trying to work on this through CBT but it's so difficult adjusting to my ever changing abilities.

I feel like some people might label this post as being negative but in truth this is just the reality of having a condition like Marfan and the reality of my life. It's time to start being more honest about this.

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!
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