Attending spice girls concert…

So yesterday I attended the spice girls reunion tour at Wembley stadium. This was both the most amazing experience and worst experiences of my life, let me explain…

Travelling up to London wasn’t too bad. The trains weren’t too busy and I have visited Wembley arena before so I had a rough idea of where I was going. The horrible sound the train makes on the underground was the main issue and I wished for my ear defenders but my hands over my ears did a good enough job to keep me calm. When I got there the problems began, there was people everywhere. It was so busy and for some reason I hadn’t thought about this or realised this would be the case, I was too hyped up about seeing both Jess Glynn and the spice girls for the thought of they magnitude of where they were performing to set in.

We had decided that when we got there we would look into getting dinner somewhere near by. It soon became apparent that this would not be an easy fete. There were such long lines of people everywhere. Each restaurant we walked past had huge lines of people. Thankfully we came across a costa that although busy wasn’t scarily so and so decided to eat in here.

After eating we made our way to the stadium, finding our seats was thankfully easy and fuss free. I was so excited, although we were high up I could see pretty well. The people behind us turned up and were rather intoxicated and kept spilling beer down the back of our chairs and it was running down the floor below my feet. It was just annoying more than anything and kept me on edge.

The concert itself was absolutely amazing! Jess Glynn was fantastic and the spice girls put on an absolutely amazing show! It took me back to when I was younger, they were just the same as what I remembered when I was younger. Yes it was noisy and bright lights and lots of people everywhere but the whole experience was so amazing that it helped control everything else. The only issue I had was the girl next to me who had really long hair and she had it down. She kept swishing it around and the feel of it brushing on my arm was seriously ruining the experience. It was making my skin crawl. It was physically hurting me every time it brushed my arm. I tried really hard to ignore it for as long as I could but it was really hard to concentrate on the show when I was anticipating when the next brush against me was going to be. Eventually I decided I couldn’t take it and put my jumper on before I did something drastic like yanked on her hair or shout at her. The jumper helped as I couldn’t feel it against my skin anymore and allowed me to enjoy the rest of the concert much easier.

The main trouble began when we were leaving the stadium. The crowds were absolutely unreal. We were literally moving slowly like a herd of animals pushed together. Eventually we made it to the station and onto the underground but this was the worst part of all. Everyone was so squashed in. I was boiling hot because I had my jumper on but feared taking it off as people around me would then be brushing against me. I was squashed against my best friend, thankfully she was there with me and I focussed on her. I can be close to her so if I focussed on this rather than the other sensations I could get myself through this experience. She allowed me to hold myself together. It wasn’t easy and I was really holding back the anxiety and meltdown I could feel pulsing inside me. It doesn’t help that I’m rather short for an adult so I already naturally am below everyone else and feel caged in when surrounded by others let alone when I physically couldn’t move or breath easily. The tube journey felt like the longest of my life and I had no way of distracting myself, I couldn’t get my phone out or read as I had to hold on so tight. I read the same poster on the train so many times I think I could recite it as it was the only thing in my eye line at the time. Eventually the experience ended and I was able to re group, feel like I could breath and bring myself back to feeling in control.

This was defiantly something that I know most people on the spectrum would have hugely struggled with and many unable to cope with at all. Even my best friend said she found it difficult being in a situation like this with as many people. I commented to her that it genuinely felt like the whole world was all in one small space. Thousands of people aren’t quite the whole world but it certainly felt like it at the time. Throughout all of this, I am proud of myself for achieving this though. I honestly wasn’t sure at times I could do it but I did. I proved I can even if it isn’t an experience I want to encounter often. Just knowing I made it through makes me feel good about myself.

Being honest and my inner demons…

So this week hasn’t been the easiest for me. Sunday evening resulted in a large Autism meltdown, justified, but still hate having them. It left me feeling drained, emotionally and physically, exhausted and with a rather large bruise to show for it on my arm.

Obviously the people close to me knew exactly what the bruise meant right away, but this is the first time I haven’t tried to hide the fact from everyone else. Normally I will make up some excuse, for example that I have hit it at majorettes, walked into something or just say I’m not sure how I did it. I always thought it was just easier, less explanation needed and honestly, I was worried about the judgment. Worried that people would take it as self-harming, think I was doing it for attention or that they would think I was falling apart and couldn’t cope when this isn’t the case. It isn’t as simple as that, and its not self-harming in a typical sense. This time round I decided I couldn’t do that. I couldn’t lie about it and say it is something it isn’t. Not when I am doing this, working so hard to raise autism awareness, work on my own autism and want acceptance for myself and everyone else who is on the spectrum.

When people have asked me during the week, I have told them the truth. I haven’t hidden the fact I have bitten, how can I when I have previously written about it in my blogs as something I do. If I created a lie then there would be speculation anyways. Amazingly this time everyone seems to have been fine with it. Of course, not happy, even I am not happy with it, but I know I cannot help it and I cannot now change that I have done it, but everyone seems understanding of it. No-one has questioned my performance at work or suggested I am in any way not coping and to me that is a relief. I hope it’s a start. Admittedly I would like to wish more that I never had to feel that way and go through it again but I know the chances of that are near on impossible. Acceptance and not seeing me differently is a very good start. One I am happy to take as progress.

The end of the week I did manage to achieve and do something I really struggle with though. I went out on Friday night with some of the girls from work for a few hours. I haven’t been out with them much, purely because I panic and struggle to build myself up to go but I managed it this time. There were about a gazzilion times where I wanted to pull out of going and seriously considered it a few times.

I wish I could explain how difficult it is sometimes. I can have all the want in the world to do something but the panic of the unknown plus the disruption it creates to my routine just makes it feel like hell inside. I know once I am out I am usually okay, have a good time even but its never easy. I purposely said I would attend for only an hour or two so I didn’t pressure myself to do anything more if it was too much but I have to admit I genuinely had a nice time and I enjoyed spending time and chatting with them all.

The girls I work with are all so lovely and understanding and I genuinely don’t feel judged at all by them. I think part of that has been my honestly from the beginning. I haven’t tried to hide a single aspect of myself or how autism affects me. I have told the truth about every last sometimes horrible detail and the stuff that makes me great too. I don’t want to hide away any longer. I have spent so much of my life just trying to fit in and become everyone else’s version of norm because it was what I thought I needed to do to be accepted, to progress, to show my strength but actually sharing this, the real me letting my autism be seen and not hiding it away in the shadows is real strength. Not accepting the arrogance and bullying from others because of things shows my real character and inner strength and I am finally proud of the person that I am. Its not easy by a long shot and the way people treat me or comments still hurt like hell but I am proud to be standing up to everyone, including my inner demons.

Living by evidence and facts…

I have been thinking a lot recently about how people may see me and think about the fact that I am writing the blog. It isn’t because I want attention or want people to feel sorry for me in any way. I just want people to understand. I am not doing it to gain special treatment or to try and show that I am better than anyone else. I want people to understand the different ways that autism can present and how just because it isn’t in your face when you meet someone doesn’t mean that it isn’t there. I want to raise awareness, I want to support others, I want to be understood by the people in my life. I want them to know why sometimes I get upset when I shouldn’t, or don’t understand or react they way they expect. I want to feel empowered, like my autism isn’t this negative thing that has haunted me throughout my life. I just want to be me and for that to be okay.

Moving on… the smallest things from people mean the most to me. When people remember the little things I am interested or obsessed with and use these in conversation with me makes me feel so happy. Recently my partner and amazing friend have been using the love you 3000 quote related to iron man, it literally makes me want to cry when they do. The fact that they think to use it without my prompting just shows me how much I mean to them. I hate being so emotionally needy but the truth of the matter is I am. I struggle to see and understand why people would want to be close to me, I need a lot of reassurance throughout a relationship no matter how long I have known the person. I cannot seem to accept that people are going to stay in my life. Little comments, terms of endearments and declarations of love really tame the worry inside me and help me to stop the heart aching clench inside me when I think I won’t have someone in my life. I hate that I need these things, I know not everyone is good at expressing their feelings (hell I’m not great myself) and not everyone needs or likes saying it often to people but it really does help support me. I will often randomly message my close friends asking if things are okay between us or whether they love me. Its ridiculous and horrible to feel like I’m begging for it. Often the response is why wouldn’t I or why would something be wrong with our friendship, which of course makes sense nothing has happened. I wish my brain would let this be enough evidence but honestly it isn’t. I work of evidence and facts, I like them. You can’t misjudge facts and evidence to me is clear, you can read it, understand and make a fair judgement from it. In a relationship or any kind the evidence to me are these little moments. The things and actions of people. I can’t just accept from someone saying of course. I need to see it, the random moments are the best form of evidence. The sweet little thoughtful gifts people give with quotes or memories are the best too, or anything to do with my immersions but that’s a different happiness.

Living by evidence hasn’t always been in my favour, especially on the side of mental health. I truly believed that I would never find someone to spend my life with and the evidence was all there to support it. It wasn’t just me being melodramatic or worrying about things, overthinking them there was a clear set of things which had happened or facts that supported my theory. I had numerous failed relationships, which mainly happened because of the fact I struggled with intimacy and closeness, kisses, hugging and intercourse all made my skin prickle and made me want to retreat. My obsessions are my life, my job included. Then there is the fact that I struggle to meet people. I don’t like going new places, and I like my routine. Seeing the same people, so where exactly was I meant to meet someone. If I did actually meet someone how could I act ‘normal’ so that they didn’t think I was a crazy weirdo, and how was I meant to have a conversation when I struggle to small talk. If I actually made it past this stage how long before they got bored or frustrated with me and the way I need to be. Then my age was going against me too, I hit 30 and that means my biological clock is ticking down, physically my body was going against me more than it already was. I am not ‘pretty’ I don’t know how to do anything with my hair or how to do much makeup at all. I don’t know what I look good in. How was I ever going to be a catch to someone. Then I met my partner Justin and everything I thought I knew and believed in changed. He loves me for exactly who I am, he understands me and wants me anyways. He takes care of me when my autism makes days or moments difficult. Physically everything has changed. I am comfortable with him and can have a ‘normal’ relationship both emotionally and intimately. Of course there are certain things I still struggle with such as breath on my face, but rather than get frustrated with me, he gets it, pushes boundaries sometimes, but will always respect that this is just who I am not something he has to try and change. It still amazes me everyday. The evidence told me I would never find love. Everything within me believed it wouldn’t happen. My autism still can’t always handle that its true and this is real but here I am living it. So maybe sometimes evidence just isn’t everything. Maybe evidence can be misread, misinterpreted. Its not about finding someone who will tolerate me, it was about finding someone who just saw me.

How autism has helped empower me…

When I got my diagnosis I wasn’t scared at all, in fact I was relieved. I wasn’t just this crazy person who struggled to be like everyone else was. It wasn’t that I couldn’t do things it was that it may be more or a challenge to achieve certain things. I can deal with a challenge. Feeling like things are impossible and you just aren’t sure why is much worse. Having autism isn’t easy of course and not everyone understands it but at least I can try to explain it to people now, I couldn’t explain something when I didn’t know what it was. I went through a selection of different diagnoses before finally arriving at autism. Depression, anxiety, cyclothymia, personality disorder, OCD, but not one of them fit everything I was doing or feeling. None of them explained everything, which made me feel crazy, like I had every condition going and how was I ever going to manage them all.

Being autistic challenges me every single day but I know myself now. I am okay with my likes and dislikes and how I may need to adapt in a world where things are every changing and not easy to understand. It has taken me a few years to reach this spot with myself and I know there will be more challenges and issues which arise over the future for me. Working in a nursery has showed me that although to support children whom have additional needs a label of their condition isn’t necessary as it is dependant on the support I put in place for that child which is the benefit, for an adult having a label allows for acceptance, understanding and knowledge. People accept that children will learn at their own pace and will need support with additional needs and that early intervention and understanding is what children need. As an adult people aren’t quite so accepting. You just end up being ‘weird’ ‘different’ or ‘crazy’ when you don’t conform or do things as others expect. The understanding isn’t there that adults have and live with these conditions. Especially when it is not as obvious. People don’t expect me to say I am autistic and therefore I feel the need to justify myself, my condition. No-one truly understands the everyday struggles that are involved, rather than saying I never would have guessed for once I would like someone to look at me and understand that I have battled to get to this place in my life, that I am proud of the women I am continuing to develop and become and not hunt for the truth of my statement, as if having autism should be as obvious as having a second head.

Over the years I have had many people say to me that they are proud that I didn’t turn out like my parents, I am not selfish or an alcoholic. Honestly, I thank my autism for that. My brain isn’t wired that way. What would have been an easy road for me to copy and travel down because of them wasn’t part of my makeup, my DNA. Yes there are times when even I think that road would have been easier, not caring about anyone but myself, drinking away everything I was feeling or coping with, having sex with whoever I wanted wherever and whenever but overall I know that the person I am now is better than the people they have become. My autism is what made things more difficult for me but stopped me becoming the people I hated more than anyone. The people I always said I wouldn’t be like. It pushed me to prove I could go to uni, it made me have to wait until I was comfortable and with the right person before considering settling down. It made me focus, made me obsessive which helped me to get through my childhood, allowed me to immerse. In many ways autism saved my life. It has also very nearly killed me but overall, I wouldn’t have ever got to stage and places I have in life without it. I am glad that something happened which resulted in my brain developing differently. It means I have been given a chance to be a good person. To create my own footsteps, to hopefully leave a path that in the future my sisters or my children would be proud to follow in.

The idea of having children…

I often think about what my children if I ever have any will be like. For as long as I can remember I have told people that I want to be a lady with a baby. Honestly I had given up on the idea of having children of my own. Am I even equipped to be a mother really? With everything I battle every day between the autism and the mental health issues. I also didn’t have very good role models in this department so what gives me any right to bring a child into this world? I used to worry heavily about what I am going to pass on to my child. It’s not that I have any problem at all with my child being autistic, I am aware that there is a high probability that my child will fall on the spectrum, but given the additional mental health I just do not ever want a child to feel that same way that I have. Its an odd sensation, wanting something more than you have ever wanted anything else in your life and yet knowing having it may be the worst thing you could do.

I know I am very good with children, I always have been and now it is my job and the one thing in life I thrive at but that doesn’t mean I would make a good parent. Would my autism get in the way? What If I felt a meltdown coming on? Whatever happens my child has to come first so how will I manage this? How do I balance my obsessions and obsessive nature as well as being a mum? I would like to think that these things would not be an issue but I cannot just brush them off. I work in facts and logic. I don’t have any here. I have nothing to draw on other than my desire to be the best mum I could possibly be. But I know as well as everyone that wanting something doesn’t make you good at it. I would love to be a singer but I can’t sing so therefore I cannot do that job. Just because I want to be a good mum doesn’t mean that I would be.

For a long time I wasn’t even sure I would physically be able to have children, struggling with an intimate relationship and everything, but now I am able to think beyond that side and everything about it petrifies me. Will my body even cope with pregnancy? The hormone change especially. I struggle enough before I am due on because of hormones to keep myself on top of everything let alone dealing with the changes that occur during a pregnancy.

Everyday I battle for the idea of a normal life, where I can do the things everyone else does and be accepted for the things which are me. I want to pursue the idea of having children in the future, and I know I will do whatever in my power to make myself a good mum. I accept that I am afraid and I may face more challenges than some others but I will make things work.

I had a dream last night, but before I delve into this I need to discuss my sister. She is very similar to me in many ways, the way she responds and reacts to situations and the way her brain seems to process things. When she was little I was worried that this was due to her mimicking and learning behaviour from me but over the years she has continued to see the world in a similar way to me, suggesting she too is on the spectrum. I am proud of how well she is doing with her life, and has a very supportive family (her mum, sisters, step dad, brother and myself to start). This makes me hopeful that she won’t suffer the way that I have with the mental health side of things and knowing that she will always have me to talk to, and maybe one day this blog may even help her understand certain things she thinks or feels. Anyways, back to my dream. I cannot remember much of it but I was at some centre discussing and observing a child with a specialist. We were communicating about the idea of this child being on the spectrum and how we could support moving forward, the women turned to me and for some reason I told her that I am on the spectrum and I suspect that my sister is also. She looked at me and smiled, then responded that I should have a child of my own because if they were anything like my sister and I then they would be an asset to this world. I know its only a silly dream but this made me feel better about the idea of children. Maybe my subconscious is trying to support me.

This links to another dream which I had a little while ago, I had a daughter who must have been about 5 or 6 years old. She knew that I was autistic and said she wanted to know how he was like Mummy. I was explaining to her that as I said to her before everyone sees the world and everything we do and see differently so not everyone thinks the same things or feels the same things that we do and that for mummy my brain is always working overtime, always really busy and processes some things differently which means that it makes me really good at some things which others find difficult but that some things I find more difficult than others. Just like how she could twirl a baton but some of her friends couldn’t. I then went on to talk about how something this child might find tricky was how to make friends or how to play the same way as the other children. Their brain was really busy doing other things that it might be that they preferred playing on their own or that they couldn’t work out how to play the games they were playing or what other people were feeling. I also said that some people don’t use any or many words. I can’t remember anything else that happened within the dream but it did get me thinking about if I do have children how I will explain this. Chances are my own children will at least have some autistic traits, if not from actually being on the spectrum themselves but because of any learnt behaviours they might pick up from me. I know that this wasn’t a complete description and like children I work with it would take time and support to teach children about what autism is like, especially as for everyone it is so different and isn’t as visual as something such as a broken leg. There are many things to support this now and I hope many more in the future.

Short piece about food and sleep…

Today I would like to talk a little about two functions that we all deal with, eating and sleeping. For me I rarely feel actual hunger, I fancy foods occasionally and then cant get the idea of eating them out of my head often but its rare for me to say that I am hungry and mean I really feel hunger. I eat because I am supposed to eat most of the time. I could quite happily go through the whole day and not real even notice I haven’t eaten anything. When I was university this was often the case, I would binge one day, just because I felt like it and then wouldn’t eat for a couple of days and feel perfectly okay with it. I have worked on adjusting this to be healthier for my own sake but there are times where I still forget. If it wasn’t for having a designated lunch break whilst at work then I would happily go all day. When my depression and anxiety is at its worst this is a lot harder and I will really have to work hard to remember to eat.

There are certain foods that I struggle to eat, mainly due to their texture. These include popcorn and Maltesers. Maltesers have a way of slipping on your teeth and you never know when it is going to happen and it makes me feel all shivery and cringy. I can however eat the new teaser range as its smaller Maltesers parts so this makes me happy! Another food thing which really makes me squeamish is spreads and spreads. Ill explain, this relates to sandwiches and mainly means I can’t handle butter mixed with any other kind of spread such as marmite, cheese, jam etc. It makes me shudder just thinking about it. In fact I could forgo butter with any other sandwich filler to be exact even cheese and ham. I will happily have a thin layer of butter on toast or bread but with nothing else added. If it’s a sandwich I would rather leave the butter altogether.

Fizzy drinks are another thing that I cannot handle. I hate the taste and sensation in my mouth. Even as a child I couldn’t drink them, always used to feel really left out when I was a child at birthday parties and things. Its also really upsetting when its only refillable ‘soft’ drinks which are always fizzy or water in restaurants. I know its only something small and silly but it always makes me feel left out. Now in my 30’s I’m actually pretty glad that I don’t drink them, means one less thing I have to try and be healthy with or cut out of my diet! So that’s always helpful. This same theory applies with mint tastes, although I have had to learn to live with this as adult toothpastes are all mint in flavour and I have to brush my teeth! There are some that I am more tolerant of than others so this helps. I do miss the strawberry and bubble gum toothpastes from my childhood though!

Now lets move on to sleep, now I don’t know how everyone else feels about sleep so this may be a common thing but this is my outlook. Falling asleep can be difficult for me, getting my brain to shut down and not keep thinking about things I want to look up, or check or make for work. Watching programmes I have seen lots of times helps with this as they distract me but also don’t engage my brain too much. I used to use music, but the playlist has to be played in a certain order otherwise I spend too much time waiting to hear what the next song will be and then keeps my brain engaged in what is happening. Like many people with depression and anxiety this makes my sleep pattern much worse, falling asleep is even trickier and  my amount of sleep will often drop down to about 4 hours per night, which to be honest I can function on pretty well considering. I tend to even now have a good few days where my sleep is much less, about 6 hours and then randomly have a night where I sleep much better again.

Even when I am asleep it isn’t easy. I have really intense dreams which are made worse by the medication I am on, or by forgetting to make my medication but even before the meds the intense level of my dreams is something I have struggled with, it isn’t even that they are ‘bad’ dreams or nightmares, they are just very realistic (even if the theme isn’t realistic at all…once I was a superhero!) which means I often wake in the night and can feel completely unrested after a night when these are particularly bad. Also once I am awake that’s normally it, I can rarely fall back to sleep again after. Of course I need sleep and the more stable my emotions are as I get older the better nights sleep I can have, but I wouldn’t say I enjoy sleeping. I just never know what I am going to get. Whether its going to be a night plagued by dreams and restlessness or whether I may actually sleep most of the way through and feel refreshed. Honestly by body has got used to it mainly and it doesn’t normally affect my energy or concentration too much throughout the day if sleep hasn’t been great but if I have a few continuous rough nights then it does start to get to me like everyone else. As I said I don’t know that this is any different from other people and I wish I could explain it better so that people could really understand how sleep is for me but I feel this only touches on the surface.

When the things I am immersed with ‘change’ or ‘go wrong’

This is one of the hardest aspects of my autism for people to understand. When I am immersed and obsessed with something everything is effected by it. I have much more control over this now I am older but the fallout when things don’t go to plan can still be pretty significant.

The problem is most of my obsessions are tv show related or film character related. These can be unpredictable. I don’t have a say over events that happen or how and when series end. As discussed previously I tend to fixate on a strong female character within the sho w and then invest myself in their happiness and their happy ending as it were. Now happy endings aren’t always achievable in television and drama is a huge aspect of what gets people watching. Logically I know this. I know I cannot predict or have any control over these events, it is silly for me in invest so much of myself in them and becomes so immersed. I know this. But I cannot control or help it. Its not something I can just shut off or stop it is a very real and needed part of myself. Obsessions helps me to feel safe and gives me a focus when everything else is too much so its not something that I can just step away from.

Examples of things within shows which disrupt my balance are couples breaking up, characters leaving a show or characters dying, even shows coming to their ends. Sara, from CSI was a huge obsession of mine, including her relationship with another character Grissom. It took years for them to get together which I managed to deal with well considering. However not long after they got together the character ‘left’ her job with the CSI and Grissom. Yes, many fans were upset and of course there are people who were committed to the show and were upset by things like this however to me this was a catastrophe, and that isn’t an exaggeration. I went into a complete meltdown, which wasn’t helped by the fact that I was severely depressed and suffering anxiety at the time. I didn’t know how to cope or what to do. I felt it all over, my heart ached, my body felt overwhelmed and my brain couldn’t process that this had happened, even though I knew it was coming. It got so bad that I cut myself, I cut an SS onto my forearm (her initials) and literally cried constantly. I was jumpy and anxious about everything, sensory overload was extreme and functioning was very difficult. It took everything in me to process and deal with something that most people would have moved on from rather quickly. Thankfully this situation sorted itself out and eventually did end up happily, but that isn’t always the case. Eventually I do end up finding a new obsession which takes the edge off but I cant say I ever truly get over these things. When I was younger I watched a programme called peak practice, this ended with two characters falling off a cliff. They never did a new series. I was only a young teen when this happened, and most people can not even remember this programme now but I still think about it. I can still picture the moment.

I wish I could put it into better words what it feels like when I have to go through this. It can absolutely feel like the end of the world to me even though logically I know it isn’t. I know I can survive and will come through it, even if I never move on, but at the time and for a good period of time after it really feels like it. It is completely draining for me coming through the process and dealing with the aftermath. My brain is buzzing, even more than normal. I go exceptionally quiet, but that is just me trying to deal with everything, I’m not purposely shutting myself away I just need time for my brain to readjust to create a reason why this is okay and why I do not have to fall apart.

People often tell me I am being overly dramatic or emotional within these times and that I should just get over it because it isn’t real. The show isn’t real and the characters aren’t real. How can I explain to them what these mean to me? How much if myself becomes invested, how to me its not ‘real’ but it is. How much it helps me having a connection to the characters. How much I have learnt and how I learn socially from these people too. How I put my faith in the idea that if these people can be happy then so can I? Loosing something this close to me or having to deal with the change and adaption that it throws at me is a big thing. Its loosing part of myself. Its what makes me feel different and isolated when everyone else can adjust so easily.

Note to people whom know me- this is currently something I am going through…again…

Love, 3000, Always x