Most of the folks who read my blog do so because they googled the phrase “Why is Autism Speaks bad” or some variant. They know me to be an outspoken person and not afraid to explain why Autism Speaks will never be among the organizations I support. This is, of course, not in any way […]
So ‘autism awareness day’ was a couple of days ago and I’m currently seeing that it’s also ‘autism awareness month’ and I find it very interesting that all the sharing of ‘memes’ about this on Facebook are being shared by non autistic/neurotypical people. The people who need the awareness the most and don’t usually understand what they are sharing or think they know it all but they don’t. I admire those who try but admit they don’t get it, they never truly will unless they have it themselves, they are humble in their knowledge not cocky and stuck up thinking they know all about autism. I do find it interesting watching the arguments unravel online mainly over Facebook.
I did spend a little time for ‘autism awareness’ looking into the big issues people have with Autism Speaks and I’m very shocked with just what Autism Speaks have done and said and see how this upsets people with autism. I won’t look at the jigsaw piece the same way again too. Originally used by somewhere else it was picked up by Autism Speaks, they see autism as a thing that has broken children, that children are broken and have a missing piece. This is so unkind and insensitive. A child is just different not broken. I read some of their past tag lines or promotional quotes where they state they will try to find a ‘cure’ to autism – autism can’t be cured, how ignorant can they be? Started by grandparents of a child with autism, they vowed to find cures and treatments for autism and support families of children – do the children not need support, do the children who become adults not get support when they become adults?
I read a great blog (the caffeinated autistic on WordPress) that really enlightened me and it had a link to a blog of a mum. It highlights so many more issues.
To be honest I’ve learned a couple of things from looking into ‘autism awareness’ –
- don’t light up blue for autism speaks,
- don’t just make people aware of autism during april, teach them all year round.
- maybe teach them autism acceptance not awareness.
- talk to people with autism, we’ll tell you what you need. Or an article or book by an autistic person. Not someone who has completed x amount of hours of training.
On a personal note, my gosh my mental health is suffering so badly. I’m not sleeping (which is common for people with autism), I’m spending my nights crying and being sick due to anxiety, the night-time is making me so anxious. I think because I’m alone, the thoughts start entering my head and I can’t control them. I’m pretty sure my meds are not working so I’m coping (or not coping) on my own – I can’t change them for another 3 weeks. However I have finally started therapy, albeit, its private so I’m paying for it at least I finally have a professional to talk to.
Trigger – quite a depressing post!
So I’m home from a 2 week trip to Walt Disney World (I’ll abbreiviate to WDW). The place I’ve been in the past and felt happy, at peace, no axiety or depression – just pure happiness …. NOT THIS TIME! I arrived at the airport and started crying, checked in whilst crying, cried as I watched my suitcase disappear, walked onto the plane in tears … I wanted to go home so badly. For the 2 weeks we were out there I cried and wanted to go home but I didn’t want to leave. The place I thought I could escape my anxiety, depression and autism is now forever tainted with the experience of the depression I felt. I would actually wake up in the morning and get teary as I didn’t want to go to the Disney parks. I’m shocked as I type this. Disney and WDW has always been my only escape from my poor mental health but this time it didn’t work. I posted things on Facebook during my trip, I thought it would trick my mind into thinking everything was fine and I was enjoying it but it didn’t. Such a complicated mind I have.
I’m not in a good place at the moment < those words just don’t give justice to the psychological or mental pain I’m suffering at the moment. But those are the only words I seem to be able to mutter to people. 1 – because I don’t know what to say. 2 – because I’m quite ashamed to be so depressed and anxious, 3 – because I feel guilty for being like this. I was suppose to help chaperone a trip this weekend and I said before I went away that actually I couldn’t do it as it was so close to me coming home from the holiday and I’d be extremely tired and anxious, no help really … I still spent my 2 week holiday stressing over it. Since I’ve been home I’ve found out the trip was moved to another date and the children were disappointed, so theres abiout 2/3 months worth of beating myself up, not being able to make eye contact with those I let down, just general avoiding of the people I let down and anyone who knows them or people who know people who know the people I let down- lucky me!
I have a appointment at my mental health centre to evaluate my situation. An appointment I requested at the end of Feburary and have been given a date for the end of April. My doctor told me he wrote a detailed letter to the mental health cetre explaining that I was suffering quite badly but I can bet my life on the moment I walk in to my consultattion with the mental health nurse, they’ll ask why I’m there. I don’t understand why it’s so difficult to find people who make the effort to feel like I’m actually a priority. These tablets I’ve been on since christmas just are not working but it’s taken til the end of April for someone to see me to see what they can do. I live on Propanol at the moment as this is what takes away the physical syptoms of my anxiety (the being sick, butterflies etc.) as Diazepam is addictive!
I have 2 tattoos of a semi colon, inspired by the Semi Colon Project which is about people wanting to commit suicide but don’t, the semicolon is when the author could have ended the sentence but chose to carry on – this analagy is paired up with this idea of wanting to commit suicide but you don’t, you carry on – the irony is that the founder has recently died from suicide. People are talking about how the founders story will go on. It won’t, shes ended her life, its over now. I don’t know if its my aspergers but it’s quite obvious that her story won’t go on because her life is over. I just want to scratch out my tattoos now. For me it affirms that eventually the thoughts will win and suicide will happen to those who suffer the thoughts. << this hasn’t really helped my mood either.
Its so sad that I can’t seem to talk about anything happy or positive. I might do a seperate blog of my Disney photos with Beast (the only time I had happy tears!) who I met at the Be Our Guest restraunt. I guess my life will be endless negativity until I’m cured! < thats sarcasim, I’ll never be cured. I’ll never be better … I am starting therapy on Monday! Privately as I can’t wait any longer for the free stuff, I’m going more crazy than I currently am if thats even possible! …. theres probably a Alice in Wonderland quote there but I’m too tired!
So my last post was 4 months ago, now what has happened since then?
- I’ve been struggling finding medication that will make me feel better.
- I’ve lost all interest in everything.
- Christmas had its usual effect of making me super anxious due to starting a new year.
- My nan died.
- My depression and anxiety got worse.
- It’s still bad.
- I recently celebrated my 2nd wedding anniversary.
I’m 16 days away from my trip to Disney World, something I spent all of 2016 waiting for and now it’s here I can’t find the strength to even pretend to be happy or excited about. My depression is at an all time worse, my anxiety is at its highest. Medication doesn’t seem to be touching it, I’m on a 9 month waiting list for therapy and my GP just talks utter crap to me until I walk out because it makes no sense to me.
I’m stuck in a rutt. However this rutt is getting deeper. My head makes no sense, it’s just cloudy. I feel depressed and anxious but I don’t really know why. It’s killing me because I need to know why. I know it’s probably related to my nans death.
Everything is a trigger for me. I can look at anything and it can bring unwanted thoughts that bring up my anxiety. I can’t even escape into my own world. The world I created in my head to escape from the struggles of my reality has a permeant padlock now so I can’t find comfort.
So yeah life has been slightly difficult recently. I’m waiting for my GP to find more medication and write to the therapy company to see if they can help me sooner but that was a week ago, so I’m not holding out on that now.
Do I just carry on crying and hurting until someone somewhere can help me, if it’s possible? Do I save up money and get my own therapy? Could I afford to see a psychologist? I’ve never seen one before, and I’ve only been in the presence of a Psychiatrist for about 3 hours for my autism assessment. Will a basic therapist do?
Picture from https://www.facebook.com/MentalHealthandInvisibleIllnessResource
ENTERTAINMENT WEEKLY WE LOVE YOU!!
EW has released stills from the Beauty and the Beast film being released next March 2017 (which I’m flying over to America to see so I don’t have to wait for the UK to get it!)
My only quibbly is Beast, I think his face is too flat and small otherwise I CANNOT WAIT!!
Check the rest out at Entertainment Weekly website below!!
Who with Aspergers has friends? What is the difference between friends and acquaintances? Then is there personal friends and work friends? Are people at work called friends? How often do you see your friends?
I have a couple of friends who I haven’t seen in months and it doesn’t bother me. Does this make me a bad/horrible person?
There is 1 friend who I see everyday – my husband.
There is 1 friend I see 2/3/4 times a week – Sam (my minister.)
Everyone else have drifted away. I don’t make the effort to keep in contact which I become aware of when my husband reminds me. Even then I get a panic/anxiety attack and we don’t talk about it again for another 6 months. It doesn’t occur to me that I haven’t seen friends in so long. I love living my life in my own world.
When I do start making plans I start to get anxious. I worry about what we will do, talk about, worry if I’m looking interested enough (which sadly I am often not unless I am talking about myself/my interests), then I panic about where we will go, if its a new place, will I be able to cope with all the sensory input. I can’t sociliase for too long, maybe 1/2 hours but its hard to to stand up and walk out as I never know how to end the day or recognise social cues.
When I get home I tend to cry as I’m trying to process what happened. Usually because I didn’t want to be there, there was spontaenous plans, things were different than I expect etc. It can sometimes be painful.
I like to stay in my own space, in my own house, usually watching and rewatching Disney/Stargate SG-1. I don’t like people coming into my space or getting in the way of my own time.
On the otherhand, I can become quite obsessed with a single friend at a time and find it difficult when they are seeing other friends – I’m like a jealous partner. Its crazy!
I find my Aspergers gives me a ALL or NOTHING view on life. Shame.
I think I’m a nice person though ….
Its been so long since I last blogged. I’ve been coming off secondary medication, trying to live without it, not coping, going onto something else, having a bad reaction to it and now I’m off it and trying again without a second lot …
Life is confusing. I’m back to my constant state of anxiety, getting 1-2 hours of sleep a night, over thinking everything, creating new things to become anxious about and over think.
I spend my days tricking myself into thinking I’m doing something productive … but I’m not. I enjoy doing nothing, I like being alone, I like not having to make myself sociable yet I feel extremely guilty for it all. I can’t seem to accept that this is who I am. Yet I get anxious that I don’t have a job, that I enjoy my days alone, that I don’t make an effort with people, that I don’t fit in with the norm.
I’m trying to focus on the fact that I’M GOING TO DISNEYWORLD IN 4 MONTHS & 1 WEEK but then it hits me that when we get back I need to work out a money plam for my MSc and workout how to save for a house.
Thinking about buying a house makes me feel scared. I seem to have this idea in my head that we can’t move out of my parents house because they need me, my mum needs me. I need to stay with her. We need to stay with them. They’ve helped us out so much as we don’t pay rent or food. When me and the hubby do get our own place and my nan passes away (my nan lives with us too! its a mad house!), they will be alone and what if they can’t afford to live alone, what if they become homeless, what if things turn very bad. What is they need us. … OR is my anxiety playing with my mind, what if they are fine, they haven’t said anything about needing us. My mum did mention maybe me and the hubby could get a house with a granny annex and they live with us that way and they offer us some deposit from selling their house … Man I needed to get this off my chest!
I want my mum and dad to come with us. I’d feel better knowing we were looking after them now and they were close … but is that really good for me?
After paying for uni and saving for a house its going to be like 3/4 years til we probably get a house … my hubby will be 33/34 years old. Will it be too late to be getting a house and being a little independant family? Am I holding him back? Have I done everything wrong?
This is were I start to feel like maybe there is no point to life, it just doesn’t seem to be panning out and I feel like lives have been ruined and lost chances of being normal.
A man was recently talked down off a bridge close to where I live. I kept praying that he come down and feel God’s presence to know he is loved and suicide was not the answer … then I think things would be better if I was jumping off that bridge or swallowing lots of pills … it’s a strange world.
Ok so i’ve been gone for ages. I’m on my last stage of coming off my mirtazapine (so i’m between 15mg and 0mg!!) and I have my appointment all ready at the Stein Centre (mental health centre) to pop me on something else, great news! … actually no. I don’t know if I want to go on more medication again. However after the other day, waking up at 12am and stimming for about 5 hours straight because I was very anxious over going somewhere the next day, maybe I need to?
I’ve also been thinking a little unrationally too. My head had been buzzing. All this has happened when I’ve been at home. What happens when I start getting out again to church, to youth club etc. while not on a 2nd medication, would I cope?
There is one thing that has been keeping me busy and sane … Cricut Explore Air machine! The bestest thing ever for crafting.
From all of this, me and the hubby have decided to let me work for myself, printing t-shirts, about aspergers …. I’m so excited. I knew I wasn’t going to be able to go back to working as a TA or any job. Then I got my Cricut machine and I’ve been cutting cothing vinyl and designs t-shirts.
I see lots of t-shirts telling me Aspergers is awesome but people don’t get to see the other side of Aspergers like having a meltdown because the till lady asked you if you needed a bag for your shopping (now bags aren’t free, they ask you if you need one!).
At the time its a horrendous experience but looking back its quite funny and being a deadpan person, people find my wording of experiences very funny!
SOOOOO … #AspieIssues is my current venture, its going to be a long road but i’m so excited! I’m thinking of t-shirts, canvas bags, mobile phone covers! my cover picture is an example of one of my t-shirts.
If you like the look of them or want to see more, find me on facebook using @aspieissues. My page is called Hashtag AspieIssues (they wouldn’t let me use a # symbol). I’ve only just created it tonight so bare with me!!
So yesterday was the first Messy Church session for me and Moreton and I rather enjoyed it.
We decided to start of with the one and only man, Elvis Pre- I’m joking, it was Jesus. So we decked the room out with christmas decorations and deeply analysed the story of Jesus … well actually we played pass the parcel, while listening to christmas tunes with each layer of the parcel containing a picture relating to Jesus’ birth!
I was impressed on the knowledge that the children had on the birth of Jesus. The next step it to help them realise how awesome he was/is and how much he loves us all! – Challenge accepted!! (Sam might murder me for accepting that MASSIVE challenge on her behalf!)
The afternoon was filled with a family BBQ to celebrate Toms wonderful 36 years of life on this earth! I think it was just an excuse to get the BBQ out, he seemed to really enjoy it. I think it’s a man thing! Tom is my cousins hubby! Nicest bloke on the planet, most difficult bloke to understand (he has a unique accent – mixture of everywhere in England I think!
I was feeling a little pooped on sunday night so I knew today had to be a rest day! Aspie issue 101 – I have to schedule in rest days. These rest days often consist of me sitting alone for long periods of time as socialising of any form is extremely tiring for me 😦 I love being alone, I like to escape to my little world in my head which is often modelled of what ever TV series or book I am obsessing over at the time!
I have 3 TV series I obsess over: Stargate SG-1, Once Upton A Time & House M.D. I watch these consistently. So for example, I could watch Stargate SG-1 over and over again for 6-7 months. While watching these TV series I watch a lot of Disney Films/Disney Youtube videos.
It’s weird but its me and it’s also what other aspies do. This is how we feel happy and safe and calm in this crazy world.
Look how my beautiful baby girl has grown. She is my youngest furbaby called Odette! Just turned 1 year old, feels like ages ago when we got her at just 6 weeks old!