The Follow Up

I am writing this post in follow up to my previous blog post "Services for people with autism and ADHD are not good enough", I had always intended to write a follow up and did start this a week ago but was so angry that I just had to stop. 

My previous post outlined the way things had been dealt with following my diagnosis of ADHD and after much pushing and pushing things have moved on a little although I still do not know what exactly happens and how long it all kind of takes. You will understand this is quite a big thing if you have an understanding of autism. 

When I refer to stress and anxiety sometimes it is unclear what I mean, I guess stress and anxiety, like depression, are words that have been devalued to an extent or at very least are not strong enough to describe what I feel. My stress and anxiety are constantly pretty high. Everything I enjoy and want to do causes me stress. I'm anxious everyday but presently it is like I am walking along a narrow path on the edge of a cliff, constantly ready to tip over. I am explosive. It was only last week I had a meltdown because my phone wouldn't charge, it totally came out of nowhere and there was no stopping it. By meltdown I don't just mean an "arrrgggghhhh" moment, I mean break things, throw things, out of control. And as an adult I usually cope with stuff like that fine, it is not something which would usually result in that type of behaviour but my anxiety and stress are so high that it does right now. I am currently living life on the edge with fear and worry that I could lose it at any time and the biggest contributory factor to my life being like this is how the follow up support from my ADHD diagnosis has been handled.

There is a lot to cover here and I'm not covering this just to moan, I will be taking appropriate action, nor am I covering it to show people "how difficult my life is" as I know we all have our own significant challenges, autism, ADHD or not. But it is important that I do this and the reason behind that I will make clear.

I mentioned in my last blog post that I was diagnosed with ADHD on the 7th July. I was given great feedback and explanation on why a diagnosis had been made and was applicable. I was given timescales for follow up sessions to help me understand and manage my condition. I was told certain things would happen. These things did not happen, the timescales have all passed and I am still waiting, totally unsure of what is going on. With services like these I do expect a wait, it is not ideal, at this stage it can't be ideal - I don't expect perfection. But I do expect professionals to do what they say will, when they say they will. That is important to me. I was diagnosed 7th July but will not have any follow up until mid October - 3 months following diagnosis and I have been struggling significantly for a very long time. I have reached points where I feel there is no hope, no point and that things will never change. Where I feel that I just don't matter. I have been incredibly vulnerable and empty, just taking up space from one day to the next. Feeling useless. And that is a horrible feeling. 

It is frustrating waiting so long. It is not good enough to be given a diagnosis and then left for 3 months - those days, weeks and months following such a diagnosis are a very confusing and difficult time where a range of emotions are felt. Or at least it has been for me. But it is not that wait that has been the biggest issue for me, I can cope with waiting when I know how long there is to wait. At this stage now waiting until October is going to be difficult because I have become so fixated on this appointment due to the anxiety that has come about expecting it to be sooner and not knowing when it would be. The biggest issue has been this - when I was diagnosed and the possibility of medication was suggested my concern was, as it is with practically all medications, how would it affect my fighting and sport? Would it have an impact and I do not want to take a risk and start new medications before big competitions, they are too important to me, I have sponsors and if I am not able to give my best and enjoy my training and competitions it significantly affects my well being. 

My training and competing to me have always been necessary in managing my frustration and have always been more useful to me than medication. When I was diagnosed it was made clear to the psychologist that I would be training for the world championships from September, to compete in November with a small gap before training for the next international competition started in January. We asked specifically if referral could be made straight away so the stress of waiting for the appointment would be lessened and it would be clear what happens before I start training and needing to focus. We were assured this could happen and would happen, that it would be the next couple of weeks following the diagnosis. But this has turned into months. The anxiety of expecting and waiting for a letter everyday that would give you an appointment to discuss medication that it has taken you a lot to agree to be open to has been immeasurable. I can't cope with the simple stuff anymore, I struggle to attend my training sessions alone and I have missed a few training sessions due to meltdowns and severe anxiety. I have not slept before 4am in over a week and I am supposed to be training for and focusing on winning a world title. I will be fighting for a world title a couple of weeks after this appointment for medication that I am incredibly stressed and anxious about happens and after making it very clear I did not want to be in that situation it is making me feel so angry that it is exactly the situation I now have to cope with.

But that's not all. My stress and anxiety got so bad that I went to see my GP, where I found out that my GP (as of 28th August) had no knowledge of my ADHD diagnosis. I don't think they were even aware I had been referred for diagnosis. They were also not aware of significant situations which had occurred recently due to my anxiety and level of stress. At a time when I have been at my most vulnerable, my GP has been completely in the dark and I have been unsupported. How does this happen? My GP was just as shocked and appalled by this as I was and has since spent time chasing up and trying to find out from all the involved services just what is going on. But most importantly because my GP was unaware of what was going on they could not help me. 

What more could there be? It almost seems how much can a person be let down and failed? Just a few weeks before the psychologist I see for support with Aspergers was due to leave, they decide it actually might be a good idea to tell me! And right up until our final appointment (8th Sept) it still wasn't clear what would happen after she left. There is still so much work to be done and I feel as though realistically nothing has improved since we started working together. No options on what could happen next were presented, how can I make a decision if I don't know what is on offer? 

The whole service has left me feeling completely baffled. These are the people who are supposed to understand autism and be able to support me but they have made me feel alone, added to my stress and anxiety and essentially made life worse. There is still so much uncertainty around what happens next with the work I was doing with the psychologist and following the ADHD diagnosis. I have very nearly given up and all I want is something very simple, just to live my life as fully as possible. I want the basics. I want to cope with day to day life better.

My experiences with services concern me. I have had awful experiences with mental health services, employment services and I also now have bad experiences with services which specialise in autism and ADHD. Am I that difficult to help or that complex? I'm not sure that I am. These experiences feel awful to me, they have made me think and feel things that no service should make a person feel. And I know I am not the only one. This is why I must share these experiences. I have got to where I am through sheer grit and determination, I have dragged myself through things that many wouldn't and I have achieved amazing things. I am lucky I could do that, for whatever reason I have managed to do it the one reason that is missing is because I was supported adequately by services. I was diagnosed with Aspergers in 2010 and to this date have had no official support with strategies for managing and minimising the associated challenges. I have had to create my own. 

Through social media it is easier now to see more of what others go through and I see a lot everyday of people going through things similar to myself. I have friends of all ages who experience this stuff too - so just what is going on? It tears me up and breaks me to see what my friends go through. To see them unsupported like me, to see them struggle and suffer like me, to see the impact it has on them. The lack of understanding, the lack of support, the insufficient and inadequate service provision is just not good enough - it must change. There must be more passion to help those like myself, these services aren't even getting the basics right - they aren't getting the structure, environments or the communication right, they aren't defining processes, or making it easier for us to process information. The way they run their services seems to just make it harder for them to provide a better service. 

The way things are is damaging. For people of my age it is bad, it is frustrating and difficult to change. But for children and younger people it is damaging - they have a chance that is being reduced and removed by those that are supposed to support them. In some of my blogs I have spoken about how I underachieved at school and didn't reach my potential because I was undiagnosed and unsupported. But now I see that there are those with a diagnosis that are unsupported, given up on and who through having a diagnosis are made to feel even more different and through the negative experiences they have naturally conclude that means they are not good enough. I see so many negative attitudes about helping those less fortunate than ourselves unless it involves tipping a bucket of ice over your head and donating a few quid to a big charity that pays their CEOs an obscene salary. I have a disability, I have dual diagnosis, I am physically able and my challenges are not obvious but I struggle significantly in my day to day living everyday - I don't have the money to donate a few quid to big charities but I give my time to others as much as I can around my commitments. 

I try to bridge the gap in understanding between those who have autism and those who do not as much as is possible from my own experiences. I try to support my friends going through their own difficult experiences caused by autism. I try to help younger people with autism and without autism see the good in themselves, to inspire confidence in them and to provide any support I can to make their life better, so they do not feel alone. I might have my struggles but I do as much as I can to help knowing it will never be enough. As a society we must stop tearing other people down and start building them up, start inspiring confidence in others and understanding difference - we are all different. Services should be there to build us up not bring us down.

Now I have written this post tearing into services but it is needed because attitudes within services need to change. However as much as I am doing that here my many suggestions for improvement will be made in an appropriate way but for those suggestions to be taken on board, the failures and the impact of those failures must too be highlighted.

Services for people with Autism & ADHD are not good enough

I have been quiet for a little while and I guess this is kind of why - services for people with Autism & ADHD are not good enough. One of the things I say is that I have a voice and I want to be heard...well I don't feel like my voice is being heard much less listened to right now so here I am and here is this post. I feel there is this assumption that as I have autism what could I possibly know about what is good for me and what I need? That is how I feel and I need to get this out here and now.

I feel powerless. Totally and utterly powerless. And writing this post is evoking extreme emotions I am unable to rationalise or fully express. I am now 28 years old and I have finally just been diagnosed with ADHD, a few years following my diagnosis of Asperger's Syndrome. But I'm no different to the person I have always been...except now I know. I am told I should take delight and pride in my achievement, that it is much greater because I grew up with undiagnosed autism and ADHD, battling against each other. And I didn't come out too badly so all is well - but is it? Is it ok that I struggled horrifically, invisibly, to get to where I am now? And if I got here by the skin of my teeth, if I just managed to get here well what else could I have done with some support? What is there in me that remains locked, untapped, untouched, unused, wasted?

My 20s have not been typical - I didn't go to festivals, clubs, on holidays with friends, travelling. I haven't had those types of carefree experiences, these years have been heavy, fraught with struggles, my experiences included mental health services, crisis intervention, diagnostic assessments and psychology appointments - if you are able to look in from the outside and be dismissive you have no idea how lucky you are that you do not have to understand or experience this. When I transitioned into adulthood it was like turning up to climb Everest with the equipment to go scuba diving - I had to improvise, I had to be resourceful and when you grow up undiagnosed you certainly know how to be resourceful. I am a master at resourceful, at blending, at hiding the fact that I don't understand what you are saying or doing. My life growing up was about masking all the things that made me different. My 20s and the demands of adulthood have brought me to my knees but they haven't been entirely without success. I have still done and achieved things that not many would and maybe it is these things which are part of the problem I have now.

Services for people with Autism & ADHD are not good enough. As much as I have been theorising about if I had had extra support with an earlier diagnosis, it is entirely possible that if I had been diagnosed as a child that things would have been no different. My childhood might have been a completely different kind of battle with services. But I couldn't imagine the diagnosis or knowledge making any difference and that is wrong because it should, it really should. If we can't get it right for children, how can we get it right for adults? It is all hypothetical of course, I could never know what life would be if I had been diagnosed earlier and I can't change it, but life as someone with a late diagnosis - well I have gotten by but things steadily deteriorated. I have been unable to sustain and maintain the sheer effort required for that base level of living and certainly not on my own. I'm talking the basics. I have never been independent as an adult. The older I got the more burnt out I felt, the less I have been able to cope with. Struggles I have which aren't visible because they aren't understandable. How could I do that fine then but not now? Why was that possible then but not now? How come you couldn't do it yesterday but today you can? You coped well before, you won a kickboxing world title, you did a speech to all those people - you're so focused and driven - you don't need help, how could you be struggling? But I am.

I was diagnosed with ADHD on the 7th July and my diagnosis didn't come about through just waking up one morning and thinking 'hey maybe I have ADHD, maybe I should see if I can get a diagnosis for the fun of it' - I never ever imagined ADHD would apply to me. It has been an explanation of a set of longstanding problems and difficulties I have experienced and the diagnosis has brought with it more frustration - life with ADHD does not feel fun. I was diagnosed by the ADHD & Asperger's team - so they should understand Asperger's and I thought that the assessment would be as hard as it got, (the assessment did not take into account that I had Asperger's which made it tougher to go through). But we are approaching the end of August now and I feel as though I have been forgotten. On the day I was given my diagnosis there was so much information to take in, first the information about why they were giving me the diagnosis and then the what happens next. I simply do not have the ability to process that amount of information presented verbally and nothing has been followed up in writing aside from the sheet of paper presented to me with a list of books about ADHD on it and this is incredibly disappointing especially as I was told to expect a letter within a couple of weeks confirming my diagnosis. My concentration and attention has been so bad lately I don't think I could sit and read a book. I have been trying to ascertain what is going on and when all the things they told me would have happened by now are going to happen. It is confusing. Why would they say it is going to happen within a timescale that it wouldn't? Have I just been forgotten? Of course I understand the limited resource and associated wait but at least is there not any indication because I need to know these things or I become crippled by anxiety - and sadly this has happened. Life is constant confusion.

Is any of this good enough? Should it just be accepted and what can be done about it? I was taught many years ago that you have no right to complain if you are not going to do anything about it - accept it or change it. So what is the plan here? While I am faced with this agonising wait for a follow up to this diagnosis, for discussion about medication - how can I make my life better for a start because that is what I was referred for some 9 months ago now. How can I begin to make sense of this when I don't have the tools or support to understand it? I have been placated with 'hang in there, what is waiting a few more months when you have always had to cope with this' - seriously?! But maybe there is some truth in this. In the grand scheme of things what am I? Just another patient, client, statistic - part of somebody's job that they can pack up and go home from at 5pm...but this IS my LIFE and my life runs 24 hours a day, 7 days a week. So what is there left to do but be resourceful and try and figure it out on my own...which is great I know exactly what I need in place contrary to popular belief but if I could act to put all these things in place on my own then why would I need the support in the first place? Maybe I wouldn't even have the diagnoses I have now. And the frustration caused by knowing what I need but being unable to implement it is undescribable.

And this is not the only experience I could describe, to describe them all would take me beyond a reasonable length for this post but at the moment it is the most pertinent. I was diagnosed with Asperger's in 2010 and now in 2014 have only just been made aware of what support I could and should be getting. After more years of stress and anxiety trying to just get on with it, being let down. I have had services apologise that they cannot help me but thanked me for teaching them about autism. I have been told by services that were there to help me with employment that they were used to working with people who were more disabled than me so this should be easy before they had even sat me down for our first meeting - and they failed. If I was so easy to support, why did they fail? I sensed all they were interested in was signing off their paperwork and closing their cases rather than supporting me to get where I wanted to be and into what was right for me. I am a person, I am complex and intelligent with feelings. I want to contribute and be part of society but I feel disconnected and isolated. I want the chance to show what I am capable of and to be supported in that but instead I feel less and worthless. Forgotten.

 

And the saddest thing is my experiences are not the only ones, nor are they the worst. Things can be a lot lot worse and in all honesty I haven't been able to explain my experiences in their entirety, some of it is too painful and upsetting. But sadder still is that these are the experiences that children are having and using to form an opinion about their disability with - as an adult doing the same I must end this post with the quote "it is easier to build up a child than to repair an adult". Services for people with Autism & ADHD are not good enough - it is obvious that a major issue lies within funding but for this to change there needs to be awareness and understanding in the right places. And how do we achieve that?

Sponsors for 2014 - SEN Magazine & Tough Furniture Ltd

2014 has been very difficult for me. It has been a year with challenges everywhere I turn - I have had significant injuries, a diagnosis of ADHD and a lot more in between. One thing that has been consistent with other years though has been the need and battle to find funding for my sport, in particular the World Championships. I had hoped to raise the money bit by bit over the course of the year but circumstances meant this was not possible, instead I had a lot of stress over the last month or two trying to find what to me is such a large sum of money.

I wrote to companies and appealed over social media through my Go Fund Me page and the response from friends and followers in sharing my fund page and offers to help me find a sponsor were simply amazing. I am lucky to have and know such kind and caring people and I'd like to thank you all now for your efforts.

Fortunately I have managed to find sponsorship and it has relieved such a huge amount of stress. I have always found it so hard to find sponsors so to have people come forward and offer to sponsor me has just been so unbelievable and I really hope that I do not let them down. So I wanted to take the time to announce my sponsors and explain a little about what they do.

SEN Magazine - www.senmagazine.co.uk

SEN Magazine is the UK's leading special educational needs magazine which provides inspiring features, the latest news and practical advice on all things SEN. Keep up to date, read articles by SEN experts, share best practice and develop your skills.

Tough Furniture Ltd - www.toughfurniture.com

Tough Furniture - for challenging environments. Tough Furniture are specialists in the supply of attractive, yet very strong furniture, to suit the special needs of challenging environments where abuse, carelessness or challenging behaviour is a problem.

I am so grateful to both SEN Magazine and Tough Furniture for their support as without it would be impossible for me to fund both myself and the additional supporter that I need to be able to attend. Please follow the links to their websites to find out more about them and like / follow them on facebook. 

Once again thanks to everyone who contributed to my Go Fund Me page. I am still looking for sponsors for the Irish Open next year and UK competitions and raising money to cover my training costs (including remedial treatments) so money contributed so far will go toward my preparation for the World Championships.

For more information check out my newly updated website www.joredman.com

My Competitive Strategies

Strength. What is strength? What does it mean? To me being strong is not hiding your weaknesses, or ignoring them. Rather it is acknowledging that those things are there, accepting and embracing them as part of what makes you who you are and then overcoming that to become all you want to be. To quote Nelson Mandela "I learned that courage was not the absence of fear, but the triumph over it. The brave man is not he who does not feel afraid, but he who conquers that fear". To be afraid but to do it anyway, to succeed anyway, that is strength. 

We all have these situations where we fear something, we fear being different, fear failure, fear being great - there is always something. I fear not reaching my potential, wasting my life and time, not being understood. In fact I also fear the things I do most of the day, feeling anxiety that does not match the importance of the situation. I live in a constant state of fear and anxiety because I feel inadequate when I have to ask why or what you mean. I fear getting it wrong because this has happened so much to me and no matter how much it doesn't get any easier to deal with.

But I am alive. I am here alongside you, living a life, my life. It is probably not like your life, but who has the exact same life anyway? I am guilty of forgetting that being alive is a wonderful thing no matter how anxious you are, how much you fear or how difficult things seem to be - living is good. I have succeeded at something just because I am here.

I can only live my life in the way that makes sense to me. And through that I am free and it is ok. Things are going to be tough, problems will surface and obstacles will be there but I will find a way to stay free, to achieve my goals and be all that I was meant to be. All my life without realising it I have been creating and adapting strategies in order to cope and get the most out of my time here.

A lot of my blog posts recently have talked about how I have been struggling with my concentration on simple day to day things and in how I have struggled to cope with the feelings this brought on in me. But this struggle has always been the same albeit sometimes to less of an extreme. I think a lot, some might say obsessively, I prefer intensely and I have been racking my brain about what I was like years ago, did I have these challenges and how did I cope? And the answers are interesting, or at least they were to me. 

I am exceptionally good at repetitive tasks but they bore me, I need to approach them in a certain way to be able to do them. In my second job I was working on a project and did the same work all day long, everyday. I struggled greatly with this, my mind would wander and I'd daydream about fighting and all kinds of things. I could put together a work process in no time at all but I couldn't sit and read the 10 page guidance notes and updates and meeting minutes that were provided about what the work was for and how it should be conducted. It got to the stage where my manager would just highlight the things I needed to consider that might not be obvious to me. I could just 

see the logical processes and how it needed to work so to me reading all this repetitive documentation was pointless. 

But the data work I had to do was so monotonous - it amounted to a lot of proof reading, data checking and cleansing. As it was I couldn't approach this at all, I tried to do the work but would drift off staring into space. This was pre-diagnosis and I had nobody really giving me any strategies to cope or any understanding of why I couldn't maintain my attention on my work. I realised I was struggling to start and I was losing track of what I had done because there was no order or structure to the work. So I made a few rules and a logical approach to follow and I set about doing the task like this which worked great for a while until the novelty of following the new process wore off and I was stuck again. 

Now I am a fighter, I am very competitive and I was very aware of my drive to win and succeed, kickboxing seemed to be the only thing I could really do long term with any success. It seems like I work at my best with a little pressure and competition. So I thought why not see if I can apply how I am in kickboxing to other areas and made it a competition. Every hour I was determined to improve my record of how many data records I had successfully got through. In the second hour the improvement was slight but after this it would be 50 records more and more and more as I got used to the process and the work just became automatic. I became so in tune with what I needed to look for, correct and match that my brain only saw what it needed to and cut the rest out. I reached phenomenal work rates in the amount I was getting through each time beating the previous hour and throughout this time you couldn't reach me, I was so focused on my activity, on my competition. 

And thinking back further everything has always been a competition. Working in a warehouse I'd "compete" against all the other workers, wanting to pick more items than anyone else, I'd get so frustrated when I couldn't find an item because it slowed me down... In my first job every piece of work given to me I had to do as quickly as I could to surprise whoever gave me the work and similar to my second job, when entering orders I conditioned myself to see only the necessary fields. There was competition with myself in that I was always striving to add more tasks, more responsibilities to my workload, to handle more and more.

All this competition produced great work but I could not give myself time out, I had to maintain that level of activity all day everyday and naturally this just wasn't possible. I'd get burnout and again be unable to concentrate but overall it all balanced itself out as when I was so focused on my work I was doing vast amounts in such a short space of time.

My mind has to be occupied with something constantly or I just drift off. So now the challenge is how can I keep it occupied, how can I create that sense of competition again in my daily activities and how do I start? I know that I will find a way to do this because the alternative is to do nothing and I can't do that. And right now this is tough, it is frustrating and I get really angry with myself. I am even more anxious because I feel I am getting nowhere but I have encountered this before and I dealt with then just like I will now. My history tells me that although I have those fears, those obstacles I am strong enough and driven enough to overcome them to succeed. And the difference now is that I know. I know what I am dealing with and that has to give me an advantage in producing a new strategy that will enable me to get the most out of my life.

World Autism Awareness Day - In Good Company

Well Wednesday 2nd April was World Autism Awareness Day and in recent months I haven't been doing much to raise awareness or in fact I haven't really been doing much. Since I injured my ankle I have really stripped things back and it wasn't until I did that that I realised just how much I had needed to. I got to the point where I was struggling to do simple things. Then it changed to some days I was getting on really well then other days it felt hopeless. Stripping things back gave me space to let my stress levels reduce and then reflect upon where I want to go and what I want my life to be. As much as I love fighting so much of my focus goes into this and with the extent of anxiety and stress I was under I needed to switch my focus - being injured, as unfortunate as it is, gave me that chance. Normally training and fighting help me manage stress levels but the better you are at the sport, the longer you have been a champion, the more pressure there is to keep there at that level. And this didn't make me feel I could allow some of my fighting focus to switch to the rest of my life when it really needed to.

Not long after I got injured I had this weird thought. I thought of the Lego video games where you can switch from character to character in order to complete specific actions that only a certain character could do. In my mind I felt like something like this happened, I visualised it happening. In the days following my injury I thought heavily about my fighting performances, I watched the videos, I pictured it in my mind. I pictured myself fighting fights that hadn't even happened. And then watching those fights in my mind, I took all the elements that make me this formidable fighter and champion who does not give up on the mats and 'drag dropped' them into my 'normal' self. To me it was a transferal of my skills, my focus and my desire to succeed to where it was most needed and that was in picking myself back up and getting my life back on track. If you want to look at it another way it was like the aliens stealing the talents of the NBA basketball stars in Space Jam, reapportioning talent elsewhere. I knew I could not train, I could not fight and I wouldn't be fighting for some time, so I was putting those fighting resources elsewhere. Honestly for me it is not that unusual. I often have to approach life as though it is kickboxing and fighting to get anywhere, I trick myself into it all being connected to how well I will fight so that I do it. What was weird in this circumstance was the Lego switch / Space Jam thing - just visualising that shift...but in a way I needed to do that too. Because I didn't believe I could do it anymore - rebuild myself that is.

But once I had visualised that I felt rejuvenated. I felt focused and strong to rebuild myself. I hadn't felt that kind of optimism or belief for some months. With some help I took control. I got my whiteboards on the wall and made plans, I considered what was important, what my short term goals were - to sort my ankle, to get some daily routine, to deal with events coming up - and I concentrated on achieving those with a view to then build up to the next lot of things I needed to regain some control over. I looked at what my problems were that were preventing me from doing these things and with help worked out some possible solutions to try. These haven't all been successful all the time but they have helped. I needed help to do these things, to get myself together, from professionals and from friends - some practical help in putting my plans together, in deciding what I needed to do first, in preparing for events and also some help in the form of reassurance and help to understand. I have needed pretty constant reassurance, some of which I don't always believe straightaway and I have been less sure of everything. I've probably had what were essentially the same conversations hundreds of times over the last few months because I have been that unsure, anxious and in need of reassurance.

So where am I now and what does this have to do with World Autism Awareness Day? Well when things are going well for me I don't always feel like I struggle that much. I feel positive about who I am, I feel positive about my diagnosis and I am confident in my ability to achieve. I like to be positive and talk positively about where I am in my life but I feel that I almost forgot that the struggles and challenges do exist and do need to be acknowledged. It is the very fact that I am so positive and just brush off how tough it actually is for me to get on in the world that means I don't always get the support I need. The fact that I can stand up and deliver a talk really well, really confidently is often what most people see, what they don't see was the stress in me getting to the venue for the talk, the agonising over what will happen, where I have to go, what time I need to leave, do I have everything I need, who am I meeting, is someone helping me get there, what do I take, is my speech good enough, the fact I cannot read the audience and how they are receiving my talk....they don't see me changing my speech every day for the last 2 weeks, reading and re-reading until I get it perfect, they don't see me virtually shut down afterwards on the way home, rigid and tense with stress and unable to speak about it, they don't see me struggle to get up and fulfill daily activities the next day and possibly the day after. But my love for and the sense of worth I get from speaking makes up for these things and again how good I feel affects the impact these events have on me, but there is always an impact. 

How things have been for me recently has made me reevaluate the importance of giving a balanced view, of being positive but also of acknowledging the struggles - this was what I wanted to share for World Autism Awareness Day. I don't want you to underestimate me or what I can do but I don't want you to think it is all easy and that I cope fine all by myself. I am a fighter and if I want to do something I won't let anything beat me but it comes at a huge cost and I am not achieving my potential - how can you be when you get to the point where your life has to come to a standstill on a regular basis? Even just looking at the days following events like competitions and speeches - those days are wasted. I have all these skills, all these qualities and talents, capabilities most would wish for but I struggle to connect these and link in to the rest of the world - I'm like an island full of resource with no bridge or connection to mainland and that is why I need you to be aware, why I need you to accept this is how I am and maybe if you can why I need you to help me connect.

Anna Kennedy and I at Red2Green

I spent the evening of World Autism Awareness Day with my friend Anna Kennedy at charity Red2Green's launch of the In Good Company project. The videos feature adults on the autism spectrum sharing their personal stories and strategies they have developed to overcome challenges in order to help others get a better insight into the world of some people with autism. They also help to highlight the diversity of those on the autism spectrum and that people are unique and present differently. There is also a link on the channel which also gives instructions on how to make your own In Good Company video so that you may share your experiences living with autism should you wish to be involved.

I filmed for my video back in August just as I started training for the World Championships, I had had a steroid injection in my ankle as I had bursitis so could not kick or move much and I have since gone on to win another world title. I was happy with the outcome of my video but found it difficult to watch with the audience. Partly because I realised how far away from the person I saw in the video I had gotten and partly because I was anxious about how other people would react. It was good for me to watch my video because it reminded me of who I am and what I can do.

You can watch my video here - https://www.youtube.com/watch?v=ucBVt8ung6M

Concentration Issues and Trips to London

Well the last blog post I wrote was quite open and raw for me to write.  I don't usually go that public over the way I feel when I am or have been struggling, I need my own space to deal with things and if I open up it usually leads to a lot of questions and attention I just don't want.  So why did I choose to open up?  Well simply because if I don't talk about it how will anyone ever know or even begin to understand?  And why is this important?  My challenges are hidden, I don't look like someone who struggles and it is perhaps less obvious given that I grew up undiagnosed and learnt to keep things covered up, to avoid that undesired attention!  But my challenges are what they are and if the people in my life can understand these a little theoretically that should makes things a little easier right?  

As usual I did intend to write again before now but hey at least I got round to it whilst still in March and that is actually a pretty big achievement for me right now.  I have been struggling a lot more to concentrate and start things recently, I mean the last blog post took me over 7 hours to put together (I hope this one is done quicker!).  Concentrating has always been a bit of a battle for me, everything at the last minute under lots of stress is usually how it goes but I haven't been able to concentrate on the simple things lately.  Unless I am really interested or really motivated to do something I get bored very quickly and no matter how I try I just can't seem to keep my mind on doing it.  Suddenly everything in my brain feels very far apart and it becomes really difficult to get to the areas I need to.  I also then, just to make it easier (!), get all these thoughts and ideas on some really random things often completely unassociated to what I am actually trying to accomplish which of course distracts me further and before you know it all this time has gone by and I have done nothing.  Another thing that also happens such as right now is that everything in my environment starts to annoy me more than usual.  This evening writing this the living room light is bugging me, the cushions on the sofa just don't feel right to sit against, the flickering TV and sound from TV over my headphones are distracting, the dog chewing his chewy bone....and this is all before you get onto the lure of social media.  I stay up really late a lot and get lots of things done just simply because the atmosphere at night feels different, everyone is asleep, everything is quiet, there is less going on and this just means I can think clearer and concentrate better.  And um just to illustrate my point here I started this about 4 hours ago and this is as far as I have got....... If you think that is bad, it doesn't beat my record as a child at 9 years old who wrote 5 words about rocks in an afternoon!!  So it seems to make sense to stay up and get things done when I concentrate better but then you get the cycle of not being able to get up and function in the day.

So as I was saying...lately my concentration has been worse.  I feel like I have lost track of everything in my life and I'm playing this immense game of 'catch up'.  In the last couple of weeks through not training I have vast amounts of excess energy.  I want to bounce around the house like tigger and dangerously my body is not telling me that I can't do this, it is my brain thinking this wouldn't be a good idea rather than any pain signals stopping me from doing it.  It is frustrating.  But now there is some exercise I can do safely without causing further damage to my ankle.  So why don't I just do this?  Problem number 1 - I don't have a plan.  Solution....make a plan?  Which leads me to my next problem, my plan ends up taking me several hours to put together (without the concentration lapses) and then to actually do the exercises in said plan takes me ummm hours because I have made too comprehensive a plan with too much to do!  And failure to complete and follow said plan results in extreme cup breaking frustration.  Ok...so try it without a plan?  Just do what you feel like?  After a little go on the exercise bike, a little go on the punchbag and a half hearted stretch...I'm bored, I want to do something else, I'm thinking of something else.  I need the plan or I need the supervision I get at training.  I'm not somebody who isn't driven, I'm certainly not lazy - I work hard when I train so why do I have this problem now?  I love to train, this should be a breeze, but it isn't.  Why?  Maybe if I knew I could fix it.  Is it the chaos in my environment, the chaos in my brain and the chaos generally in my life, in that I have lost track of what I actually need to do?

I need wall planners, timetables and task lists but took this a step further with a new organisational app on my phone.  My wall planner gives me a visual of events in advance, my timetable handles the upcoming week in more specific detail and the task lists tell me what things are outstanding to input onto the timetable.  The new organisational app allows me to schedule these tasks and routine tasks with alerts so that I don't forget to eat my lunch (have a giggle but this happens on a daily basis).  My husband and I have set new routines to ensure everything is tidied away before bedtime so I can get straight onto my tasks when I get up and we also set which tasks additional to basic routine I must complete the next day, as left to me I'd set myself a ludicrously ridiculous amount of tasks to complete (just like the excessive training plan).  I also don't know what takes priority, the only thing in my life I ever really gave priority over anything to was kickboxing!  So I need his help to work out what I should get done first.

I have kept to basics on this app so far, I have to do ankle exercises 5 times a day so just to make sure I have been doing those has been a challenge.  I have been setting myself little tasks to help me get in more control of the areas of my life I need to.  Judging how long tasks may take is a bit of a problem as it can range between such a long period of time if I'm struggling to concentrate.  Also if I'm a little bit late in starting tasks it piles the pressure on to catch up with the rest.  But nevertheless the reminders have been working.  There feels like there is a little bit of progress and as long as I feel I am progressing toward something I am usually able to placate myself.  And this is true of now to an extent except when the ultra perfectionist side of myself shows up and shouts 'don't you realise how pathetic this actually is?' at me.  I feel like I should be doing more, I could be doing more and I put myself down massively because I feel like all the things I am struggling with so much other people don't even need to think about too much.  It is like there is always this never ending battle going on within me that is not even apparent on the outside.  It is tough.  When you identify what you find difficult, you take control and try to put things in place to make life easier and essentially function to the best you can and then at the end of it all you turn around yourself, tell yourself you are stupid and less just because the very way that you are means that you have these challenges, that to be worthwhile you shouldn't have these challenges and in the process rip apart all of the solutions you worked so hard to implement.  And I, as of yet, can't seem to stop this.  From the outside it can look like this huge attention seek thing, but I hate the attention and from the inside it feels hopeless.  I need reassurance but hate that I need reassurance.  I hate that it is so illogical because I would never tell anyone with my challenges what I tell myself, so why do I think it of myself?  Why can't I see all the good things that make me who I am right now?

This week has been a good example - this week I had to go to London to do a speech.  The speech was right in the centre of London, there was no way I was driving here, it was a train and public transport job.  So what happened?  Well I don't travel by train often nor by any type of public transport.  I get overwhelmed by the noise, I panic with lots of people round me and struggle to work out where I am meant to be.  It would be very easy for me to get lost and if I did get lost I would not be able to recover the situation, the anxiety would be too great.  And when I say anxiety I mean you can't think, can't process, can't make sense, everything is a fog type anxiety.  So I need help.  I need somebody to accompany me, help me find where I need to go and get there in one piece, on time and calm(ish).  A lot of this falls down to my husband to help me with but he works full time and it is not always simple for him to get time off, if he got time off everytime I needed help he'd have no holiday for actual holidays.  So I had to find someone else to help me and even though I know I need the help, I feel embarrassed that I need to ask and I struggle to ask.  And on this occasion finding somebody was really difficult, my recent difficulties had meant that I had been struggling to plan and think things through in advance.  For me to cope with this journey, I had to be accompanied and my husband had to put a very basic step by step list of instructions together which told me what to expect and what I had to do.

Just like when I fight, when I am delivering my speech, I feel more confident and more relaxed.  I can struggle to hold a conversation sometimes but I can stand up and deliver a speech and I actually want to stay up there as long as possible, I guess it cuts down on the conversations afterwards!  I like that what I am saying is all planned out and I even throw in things on the spot now that I manage to keep relevant.  When I finish speaking I feel achievement.  If you have known me for many years you might understand why I feel this but just for the benefit of those that don't, I grew up not daring to speak to people.  All through my life there were silences, with family, at school, at kickboxing, with friends.  Anything that I didn't know how to approach or deal with met with silence.  So speaking to a room of strangers is a huge achievement every time I do it.  I took the fear of letting people hear my voice and decided I didn't want to let that stop me from being heard, so I put myself in front of a room full of people and spoke when nobody expected I would.  I have proved I don't need to be feeling at my best to achieve this or to even do it well, I don't know how to give less than 100%.  I enjoyed this speech, it was the first time I had done a speech like that one and I'd worried a lot about getting the most meaningful and important points across and not leaving anything out.  On the way home from London I was totally drained.  I was desperate to get home.  But compared to the day after, the evening after is always easier.

To say that an event like this wears me out is to put it mildly.  The day after I got up for an appointment, otherwise I probably would have just ended up chilling out on the sofa all day.  To cut a long story short I wasn't happy after this appointment and I needed space to work things out.  During appointments, meetings and sometimes even general conversations I find it difficult to process what is going on, what it means or how I feel about what is happening.  I hear what is being said, I understand what the words mean and all that kind of stuff but I struggle to apply what it all means to myself, how I feel about it and even what I action I want to take.  This can be a big problem and pretty frustrating.  I often can't work all this out until I'm on my own and have some peace and quiet but of course at home I can't just sit down and think....I have a puppy.  I also have problems concentrating and I was sat at home with every sound from the street dancing around in my head, an excited puppy pouncing on my feet, feeling drained from the day before and I knew I just had to get somewhere so I could think and process what had just happened.  So I picked up the mischievous puppy, bundled him into his seatbelt in the car and we drove for two hours.  My car to me is absolute bliss...until I am stuck in traffic or dazzled by millions of lights at night of course.  In my car I can turn up my music and I can't hear all the distracting sounds that plague me all day.  I find it really calming.  Oscar was perfectly happy chewing his toys and snoozing on the backseat.  We stopped and went for a little walk half way and once I felt calmer we went home.

After we got home both of us crashed out on the sofa and slept until my husband got home.  I went up to bed and continued to sleep.  I was the most awful wife - I could not speak to him, I couldn't be near him and he could not comfort me.  I needed to be on my own and it is difficult to explain now why at that moment I can't tell my husband nicely that I don't want a hug, I don't want to chat and I just want to be left alone.  But he understands.  And fortunately he picks up very quickly on how things are and gets why it is like that, he knows when to back off.  In total I slept around 6 hours, woke up for a couple hours then went back to sleep for the night.  In reality after the day before doing the speech and travelling to London I needed a lot more than this.  But in spite of the after effects, going to London and doing the speech was worth every second for the sense of achievement and the insight I am able to give to others.  And the rest I will just have to figure out......

Injuries and Rehab

As a sports massage therapist I also have a blog about injuries and sport related stuff (Top Form Blog - nice little link there although I am just as bad at updating that blog as this one!) and I thought with my latest injury it might be a good idea to detail there how I am treating and rehabbing that injury.  If you follow me on social media etc you will know that last week whilst competing in the Irish Open I sprained my ankle quite badly and have now been forced to sit down and chill out for a while!  So this idea got me thinking a little bit more deeply about how I should go about this because the impact not training will have on my levels of stress is bound to be fairly significant but perhaps not quite appropriate for my more factual, business related blog even though the psychology of injury will be mentioned.  I thought do I run the blogs simultaneously with the how crazy it makes me become against the what exercises I am doing etc?  But then I realised if I am going to be true to this then I really need to back things up a bit because there is a lot more to my current stress levels than my current injury predicament.

I don't know what has led you to my blog now, I don't know if you really know me or if you do what capacity you know me in - have you seen me fight, have you heard me speak, do you train with me or are you friends with friends I have or you might be my own friends and family?  If you have heard me speak then chances are you may have this perception of me that I'm this fighter, I don't give in and my life is all positive.  While this is true - I have a lot of positive things in my life and I don't give up - I am real and I don't have it all worked out, I hurt, I fail and things don't always work and this is sometimes barely noticeable.  I grew up until my 20s without a diagnosis of Asperger's Syndrome and I struggled a lot particularly with stress and anxiety.  My poor mum wanted to take me to see a doctor when I was a teenager and I refused, I was convinced that I was "wrong" and seeing a doctor would confirm that.  So I hid how I felt, it wasn't that difficult as I struggle to show how I feel but I made extra effort to be like everyone else and fit in - I still do it to an extent.  But it is exhausting, even just being in this world is exhausting and there is a time every year where I just can't do it and keep up / cope with the demands in my life, sometimes it is very brief and sometimes it drags on.  

This is where I am now and where I have been for the last 4 months and it is true the longer it goes on the harder it is to get back on top.  So I figured in this period of time where I am recovering from my ankle injury there is an opportunity to really focus on rebuilding myself to the strong, focused person I am and getting myself back on track to show the world who I really am and what I can do - and why not blog about this too?  I mean this is the embodiment of what has made me who I am and this will show how I got to where I am - this is what I do and what I have to do. And essentially it is like a rehab just more for the mind.

Last week I was absolutely devastated.  I was competing in my 11th Irish Open, I was the fittest I have ever been, I felt after my hamstring injury in 2012 that I'd finally got back to my best and maybe even surpassed my best, I'd really put the hours in to my training for this.  I've had injuries before but something like that had never happened to me during a fight and I felt like I was just getting into the fight as it happened.  It is one thing to lose but it is another when something like that means you don't know how things would have turned out and for me that was quite difficult to deal with.  All those "what ifs".  At first I was gutted because of the competition but then as I started to realise that I wouldn't be training or competing for a while things went a little out of control in my mind and I began to wonder if I would ever get to the level I was at again, if I'd ever be the same.  I was more gutted because of the hard work and length of time it had taken me to recuperate from the hamstring tear and well, I'm not getting any younger, how many more years do I have?  I got home and I am such an active person, I hate to be sat still.  I wanted to smash the house up, I wanted to smash my foot to pieces, I was angry and frustrated.  My brain was racing and I was still - it seemed I couldn't do anything I wanted to do.  Normally when my mind is that active I am bouncing off the walls and I can't sit still - so this week I have struggled to live with myself and it has been an achievement to have avoided a meltdown and not break anything.  I thought things could not have got any worse before I went to Ireland and this was something I totally did not expect.  

Before Ireland I had been really struggling.  Since I had come back from the World Championships last October things had slowly been deteriorating to spiralling out of control.  I struggle with the loss of the structure, routine and focus on the goal of winning the World Championships, it is really difficult to adjust after a week in a new place to come back to a change at home.  I stopped being able to sleep and was not sleeping until 4 or 5 am every night, this improved with the addition of Oscar the puppy to our house - he keeps me busy and calmer.  But presently I can't sleep without my ipod on because my head is too active.  My difficulty with concentration had got to be so bad that until now I have been unable to start anything and see it through.  I struggle to know what to do and when to do it, even to the extent of making sure I eat if I don't have a plan.  I am distracted by absolutely everything - I get distracted by my own thoughts and deviate from my plan because I decide it is better to do something else but in the end that never gets done either.  If a motorbike drives up and down my street a few times, it drives me insane, I can't block that sound out and I start to get angry and throw things.  When things are out of order, if my house gets messy or my inbox is overrun with emails I lose track of everything - I don't know what is going on and I get very annoyed and agitated.  When you need a good amount of structure and organisation in your life to function, such as I do, to feel as though you have "lost track" of everything is simply debilitating.  I have felt unable to do anything.  For the past 4 months I have hated myself, I have been so cruel to myself, picking apart every facet of what makes me who I am.  I have woken up more times than I can remember wishing I hadn't woken up.  I feel like a failure.  I have wished I didn't have autism, I have told my husband that I bet he wished he never married me.  I can't always identify what I feel or why I feel it and I call myself stupid, useless and pointless - nearly on a daily basis. 

I am perfectionist.  I don't do something unless I can put 100% into it, totally all or nothing.  This means I put great pressure on myself.  I know what I am clever enough to do and I fear not achieving what I am capable of achieving.  I'm good at what I'm good at and terrible at what I'm not good at and there tends to be no in between.  And this is not helpful when you feel you have lost track of everything in your life.  To say I have been highly stressed would be an understatement and to then at the start of the year have competition after competition in these loud, busy, extremely full on environments - I have thought at some times that I might explode from the stress.  And no matter what I say here or how much I choose to reveal I can never truly explain just how things have been for me over these last 4 months and even if I could there are many people who would never really understand.

I am lucky.  There are lots of people in my life who love me, care about me and who I have worried.  There are lots of people who support me in many different ways and I appreciate it all because I need that support.  How would you cope if you received messages everyday from someone saying they are stupid, like everyday?  I mean are there only so many times you can tell them "no you're not" before you get a bit pissed off or would you be able to understand?  Then there is also the poor lady from the Asperger's team who tries to help me and gets told that she asks stupid, pointless questions and that for that reason I won't answer them.  And how would you cope if your daughter wouldn't open up to you, or your wife told you that you hate being married to her and marrying her has to be the biggest mistake you made?  When I behave, think and talk this extremely it is almost like I have been taken over by this darkness - I feel dark, I feel slow, full of hate and this, I think, happens because I am overwhelmed, by what I feel, by what is happening around me and I just don't know what to do with it all, where to put those feelings.

Strangely it is this ankle injury and new focus of making it better that has led me to this point now, today.  This point where I am focusing on pulling it back round rather than just making it from one day to the next.  Many of the things I have listed above aren't going to go away - they are features of the person I am, albeit presenting in an extremely amplified way due to the levels of stress.  I haven't gone into what has made me stressed but I'm trying to establish a business, fund my sport, do my sport, write a book and god knows what else.  There are seasonal stressors too and it all just builds up.  That's about as much as I can explain except to say there is also this thing I do where I look at everyone else and what they seem to seamlessly with little effort manage to do and achieve and compare against what I struggle with.  For any person it is simply the worst thing you could possibly do to your self esteem, it only makes you think about what you aren't and what you are lacking and when I do this I forget all the good things I am and all the things I have achieved.  I write them off as "normal" and that "anyone could do it".  And then I feel less.  But I am not less.  I am a whole person, there is nothing missing from me, I am what I was meant to be.  If I grow into more then that is great but I'm not deficient in any way right now.  

Realistically this is what I do best.  I know how to drag myself back up, I know how tough it is and I accept that it is just how it is.  I accept that my challenges are there and I know I just have to find ways to manage each thing that crops up.  I am real, I don't have to be on top all the time to be the positive example of someone living with Asperger's - it is not my success that makes me the positive example it is the very fact that I am real, that I do live through the challenges, I do hit the figurative brick wall and fall down but I still come back and I will come back and I will smash that wall down.  Now I can't fight or train for a while but there is a reason that I do fight so well and that is because of what my life is.  When I step onto the mat to fight it is my sanctuary and I am fighting all these things that build up inside of me.  You cannot do a sport like mine and be successful if you don't have the mental approach and that is not that you are mental enough to fight!!  I know that if I approach anything in the way that I approach my fighting then I will achieve it, I will not be beaten and that is what I have to do now.  People underestimate me all the time and really that is their loss but when those people then put limits on what I can do, well then I have to prove them wrong.  I couldn't care less what people think of me or the way I act but never think you know what my limits are because that is up to me.  I don't live my life to impress anyone else, what I do I do because I choose to.  So sit back and watch what I do best and that's to kick life in the face, or maybe I'll just settle for a punch for now as I do have a bad foot?!