Anxiety, Stress and the End of the Universe

“Oh, the anxiety and how it troubles me”. Yep you guessed it, my anxiety has got worse. It started to deteriorate about Christmas and now I’m having trouble eating, swallowing and sleeping. I have been begging for help but everyone just says it’s normal for Autism. I also suffer from terrible depression and that has been getting worse too. I feel very alone and desperate clinging to any ray of hope to ease this awful feeling. Anxiety isn’t new to me I’ve had it lingering around chronically since the age of nine. The thing is of course which is worse autism or anxiety? How would life be if one had one and not the other? I can’t answer, all I know is I’m desperate for relief.

As a consequence to this I did not go to the thing for Tilly at the Royal Academy. I opted out about a week and half before the day having realised that my present bout of anxiety was too high to enable me to do it. As you can imagine the whole thing was very distressing, feeling like I’d let everyone down and of course I was curious about the event and wanted to experience it. I don’t think this is the last we’ll see of Tilly at such events so maybe I’ll be able to go to one of those. From my mum’s report the actual day at the Royal Academy went well. She said she enjoyed the workshops she attended and networked. She is now quite an expert on “female” autism and how it affects one. She was very good when I said I couldn’t go to the event and instead encouraged me and dad to have an afternoon at a National Trust property near Bury St Edmunds which has a very nice tea room. We did an hour’s walk and saw lots of lambs which cheered me since I was rather down about missing the Royal Academy. So all in all we all had good days if not the ones we intended.

Apart from the Royal Academy event and chronic anxiety life has been ticking over quietly. I’ve played a little golf, listened to lots of music and continue to read “the hitchhikers guide to the galaxy” – I’m on book three at the moment. Some of it is so surreal it is a bit complex but it is such a great story, so well written and very funny. Also I went to Build a Bear with the National Autistic Society where I bought two new bears. One is a horse called Kennedy and the other a sort of street cred bear who I’ve called Montana. My flat is getting rather full of cds,  Bears and souvenirs  people bring me back from holidays and that’s not mentioning my fridge door which is covered with fridge magnets, mainly from holidays my parents have taken in the last 6 years.

Anyway “onwards”. I know I must keep going even through the hard times. Let’s hope we can find some relief from what can be a “living hell”.

“Busy, busy.”

 

Yes, it has been ‘busy, busy’. The last week and a bit have been full of challenges. I have often been very anxious. But I have come through which I think personally is a great achievement. The problem is that if only I could say to myself I did that so I know I can do it again. The trouble is it doesn’t work that way for me. Everyday feels like starting over again. My niece came to stay with grandma and grandad (ie my parents) for half term so I did a bit of auntying. Now I’m not really that great at it and find the whole thing very challenging, and I did beat her at tenpin bowling twice. I also managed burgers at a local restaurant without choking so that was confidence building. And I did play some nice games with her like Monopoly.

As many of you may have heard “Tilly” is going to the Royal Academy of Arts in March for the SEND conference “Why and How” and I have agreed to take part in a panel discussion live. Why I said yes I don’t know – but I do think it is really important to talk about female autism – but the whole thing is just huge. Not only do I have to appear, I’m also doing two nights in a hotel and eating out. My parents are coming, my mum will be with me, so I will be looked after. Also, in this most hectic week I’ve had our organiser Susan and the illustrator Ellen get together in my flat for a discussion on what we were planning to do at the Royal Academy and also Ellen brought along some of the first pictures she drew for “Tilly” and it was absolutely fascinating to see the process up to the finished book. We are now busy emailing each other with ideas. I’m just going with the flow and hope I don’t sound too nervous and dull on the day.

And if this wasn’t enough I also fitted in a trip to the dentist – I need a crown. I find visits to the dentist especially nerve-wracking, because I hate things in my mouth as well as the taste and smell. Fortunately I have a kind and understanding one. But the big highlight of the week was the trip to see “Rumours of Fleetwood Mac”, the best Fleetwood Mac tribute band out there. This my sixth occasion of seeing them and although the set list hardly changes year on year I’d still say they are a quality night out. It probably helps that I’m a huge Fleetwood Mac fan who has studied the band so my knowledge is really great. I did once about 13 years ago see the real Fleetwood Mac in London with my cousin and I must say it was brilliant but “Rumours of” fill a gap if the real band is not touring. I do find going out in the evening very stressful and I had my usual toilet “do I need to go/do I not need to go” the whole way through, but my National Autistic society carer Anthea was very good and got me through it. We even took a picture of me at the venue to send to my mum and here it is.

Things are calmer now. I got back on golf course on Tuesday and Friday. We did the usual shopping and cleaning. There is word of a trip to “Build a Bear” for a treat, I’m still looking for Montana and Kennedy!! To go with Madison and Dakota-Brie my other cheerleaders. Anyway as I said Busy, Busy but just about surviving!!

Coming over all political

January has been rather hectic with autism stuff. I attended two meetings, one by Cambridgeshire County Council and one by an organisation called “Speak up spectrum” which is supported by Voice Ability. The Council meeting was quite intense and had important people from around the county. The main thrust was getting people into work and sustaining work. I feel in some ways they were missing the point. Many autistic people struggle to get through a day without having to work as well. I would love to work but find it hard to cope with the basics of life without having a job too. I just feel a broader outlook from the powers that be might be better to improve quality of life for some of us.  At “Speak up spectrum” we too touched on employment but also discussed our campaign to find good social spaces like bowling or the pub. Our leader had also been to London to discuss autism with MPs etc so we had feedback from there. As you can imagine I found this all rather stressful but I feel  it is important in our quest for better understanding for autism (our “speak up spectrum” leader is a woman).

Mum went to a conference on female autism in London called “the Big Shout”. She found it very useful especially listening to some girls from Limpsfield school. She discovered, which may seem strange at such a late date, that it is typical for women and girls on the spectrum to suffer from overwhelming chronic anxiety and to self harm and have suicidal ideas like me. Now I’ve had chronic anxiety all my life and my parents have tried everything but hearing it enabled both my mother and me to accept it and feel “normal”. Over the years my parents have realised that my anxiety cannot be helped by reassurance and ordinary ways of coping. They and my carers praise me for the good things I do in a day which makes me feel I have achieved something. I also reward myself every few months with a cd or two.

I challenged myself the other day by going out for Sunday lunch. I had roast beef, it was very nice but very challenging. I get so worried I will choke and vomit, it is really scary. I will also go out when my niece comes for half term. I do find children a bit of a nightmare. I have no clue what to do with them but I’m going with her to a golf lesson and bowling so hopefully all will be ok. She’s very lively!!! I’m still on the golf course most weeks trying desperately to hit a good shot. Sometimes I do, but others end up in the lake. I do enjoy it but I get so frightened beforehand that my bowels won’t hold out or I’ll have a panic attack in the middle of the course. Anyway enough about my golf woes. I struggle on and Tilly goes from strength to strength.

When the wheels started to fall off

At the moment I’m reading “The Hitchhikers Guide to the Galaxy” which has me musing on the meaning of life. One thing I often ask myself is how different life might have been had I been diagnosed earlier. The signs were there but they probably thought I was just a low achiever. Why people didn’t think “what’s up” when it was clear I was struggling and being a nuisance in class. I used to chat incessantly, sing and copy the person next to me. I was utterly lost. I got diagnosed with Dyslexia at 8 and everyone thought that would be the answer. But even with extra help I was still way behind my peers. I’m measured as having a pretty high IQ so you can imagine my humiliation at being in remedial reading. Most of my contemporaries treated me as being a few sandwiches short of a picnic. My favourite thing to do was play. Me and my brother played huge games with Playmobil which would fill the living room floor. We had friends in the street so we used to play games with them. I loved long summer holiday nights with about ten of us playing baseball and talking. I wish those nights could have lasted forever but suddenly my friends didn’t want to play or “hang”. One told me we were older now we didn’t play games. I was gutted everyone had grown up but me!

A New Year…

A New Year and Tilly marches on. The New Year is hopefully going to be good for girls with Autism, although I think it will be challenging too. Tilly has led us all on this journey and where she takes us next I can’t say but I hope above all it will be positive. Firstly I would like to introduce myself – My name is Rachel and I am the real Tilly! Mum says the name just popped up when she started to write! Where did that come from!

Tilly’s story is my story, but with one big difference – I wasn’t diagnosed with autism until I was 33 years old. I’m very happy for my mum to write this book and hope that in writing this blog people can read about my life and relate to it and not feel so alone. I’m not going to lie. Life has been really tough with some very low lows but it seems really important that through my telling my story other girls will have better chances than I’ve had.

I’ve enjoyed being a “consultant” on the book and am sort of flattered that I’m the subject of a book. Mum says the book came about when one night she sat down to write an angry letter – not sure who to, just someone out there! – about my life and all the missed opportunities to properly diagnose what was wrong with me. But the letter turned instead into the narrative that would be “Tilly”. I sometimes get very angry with the world about people not knowing what is wrong with me and their inability to make me better. I often fantasize that I have my own unique disorder – Batesian syndrome – and that someone famous will want to study me and can make it all better so I can have a normal life. I often feel my problems are a punishment for me being a bad person and that the whole thing is my fault. On occasion it feels like I let all the bad stuff in and now I can’t control it. I have stated all this and more to people who are supposed to know but until the suggestion of autism came about they all seemed not to have a clue.  I don’t blame them, I just think I’m more intelligent than them or something. I feel like I gave them all the pieces but they failed to put them together.

The Book Launch

It’s here!! Tilly has arrived!! The book was published last week. I have been so nervous wondering what people will think. But so far so good. People who have read it keep saying what a good and important book it is. I can’t believe my story is helping so many. The big nerves, however, was saved for the launch event in Cambridge. We booked out a bookshop in Cambridge and we had 80 people there.

There were friends from parts of the UK, psychologists, teachers, my carers and people on the spectrum. I don’t think I’ve felt so sick in a whole room full of people who want to talk to me. Usually at this kind of thing I feel a bit of a gooseberry but here I was the centre of attention. My Mum gave a talk thanking people in particular the illustrator who has done so well bringing Tilly to life. And me! We also had a few words from a Consultant Psychologist who my Mum’s known for ages. My Mum was close to tears but then so was most of the room. After the speeches I sat down to sign someone’s book, looked up and there was a huge queue who wanted their book signed by little me. I must have sat for half an hour signing. I felt like “One Direction”! We sold all the books in stock. What a night! My fifteen minutes of fame! I’m just so glad that people are enthusiastic about it and I’ve been told that schools are using it already and two girls who came with their Mums loved it. I just want to say how pleased I am by everyone’s reaction. Here’s to girls and women on the spectrum the world over – small steps to get the recognition we deserve.

Rachel