suzefricker@mylifeaccordingtome.org Available all the time, just send me an email and I will get back to you.

Grenfell

So, today (Friday) I had a therapy appointment. I finally decided to seek help after struggling to deal with the Grenfell Fire. I got told I have PTSD. I put off asking for help because I felt there were worse off people then me and after the first 6 months my nightmares became intermittent. But after completely freaking out about a possible fire hazard I realised I needed help.

Since the fire I have gotten progressively worse. I used to use wax melts but wont use them anymore incase the candle starts a fire. When I goto public places I am hyper vigilant and if I spot a fire hazard I leave. I can no longer attend BBQs because of the smell. It is forever now associated with the smell of burning people. I need to get back to normality.

PTSD is something that might not hit you straight away but can be devastating. It is not just combat vets who deal with it.

On June 14th 2017 I woke up next to my boyfriend as we always did and I went to shut my window. I asked him “who is BBQing at 5 am?” We made breakfast and I went to check the travel. That’s when I saw what was happening. Something inside me turn off and auto pilot kicked in when I realised it was not BBQ but people dying.

All I know after that is I went to an appointment which cost me £100 to get to and from by cab.

When I came back from the appointment I chatted to the ladies in the estate and realised things were still needed at the volunteer shelters so my mum and I loaded the car up and made our way down by this point it was 2PM. I looked at the tower and I could still see flames. The smell was so bad that even the face mask I had been given did not help. I wanted to cry, scream and be sick all at the same time. Mum and I made the rounds and ended up at my childhood church which was a stones throw from the tower.

The sight I saw was chaotic. You had volunteers and their kids helping out. Survivors who were now displaced sleeping on chairs and kids who survived clinging onto their parent/parents for deal life.

Mum helped with the donations and I helped keep snack table stocked up. The, I went to where people were crying. I swear I was with this woman for 30 minutes but it felt like hours. I prayed with her until she got to see her mother. As I walked away a nurse who dropped everything to help out came and asked me if I was ok and I just broke down in to tears. The children’s faces, the pain and hurt and loss I was witnessing I could not comprehend what was going on. I still can’t. She asked me when was the last time I ate and I realised I hadn’t eaten at all so she got me food. Even though I was protesting saying give it to someone in need she fed me and hugged me.

I knew then because of my own health I had to leave I could not stay there any longer.

Mum and I left after a couple of hours and I was drained.

That’s when the nightmares started and the guilt for not hacking it out longer due to my mental health issues, my physical disabilities and everything else.

I put off getting help for the same reason I tried to get out of food… someone else needs it more than me but I pushed it down so hard it came back with a vengeance.

Please if you were traumatised by the fire, it’s never to late to ask for help.

Food & Autism

When you are autistic you can have some peculiar eating issues.

Some people can not let their food touch, other people have to eat their food in certain orders, and most have issues with textures of food. What I have found realizing my issues with food are linked with my autism I have noticed that people really do take for granted what they eat.

I learned from an early age I have an issue with meat. I can not stand the texture of most meat is most formats. Because of this, I had to dabble in vegetarianism. However, this is not a hard and fast rule. So, I can deal with corned beef when it is completely mashed up into a corned beef hash. I can handle mince if it is not fresh or too long, essentially it has to be small enough that when cooked it can just be swallowed if I have to chew it then it is not good. I can not handle roast anything. I hate the texture and I hate anything that is still in the form of the animal it was. I can’t eat it. It becomes a chewy mess in my mouth and my body will not let me swallow it.

But again, it is not just meat that I have an issue with. I can’t eat egg in any format I find the texture horrible and taste even worse. Essentially if you want me to eat an egg you need to drown it in BBQ Sauce and I mean DROWN it. Brown bread I hate the texture so I can’t eat it. Broccoli, cauliflower, (tree veggies) you will never find me eating them Quiche HELL NO and the list goes on. It is a problem of texture and taste for me. Mostly the texture of it but sometimes it is both.

So, when I see people make HUGE plates of food and then throw half of it out it breaks my heart. When you have problems with food, you really realize how much actually goes to waste in the world. I try not to waste so when I make a big pan of anything I will portion it up so I had risotto twice in a row this week because I was not about to throw half of it out.

It can get me down because I struggle with cooking and it is harder to find recipes that are for vegetarians which keeps out the food I cant handle. I would love to learn recipes that would work for me but I am not sure they exist. My dream would be to fly out to LA, spend one on one time with a top chef *cough* Anne Burrell*Cough* or others like Bobby Flay, Alton Brown, Tyler Florence, Robert Irvine or Beau MacMillan *Cough* Anne Burrell *Cough* I think his name is and give them a list of what I cant make, what I can’t eat and work out some simple dishes that would A give me better skills in the kitchen but also be healthy for me.

Cooking and food are a big passion for me but it is also my biggest pain. The world of Autism is not great. You do your best to bring the positives to the surface but the bad stuff like issues with food can always bring you down.

 

Dreams keep the hope alive

Dreams are always a good thing. Honestly I stopped dreaming about being rich when I finally realised the saying “if you want to make God laugh, tell him your plan!” is true. Just because you you have plans it does not mean that they are what your supposed to be doing.

I still have 2 dreams which I want to share with you all.

Dream one (if I had the money) I would rent a flat/house with extra bedroom. I would then apply for foster carer status. Whilst I went through this process (and if I got accepted) I would buy a piece of land and build a home with multiple bedrooms. I would then ask to take in siblings who were at risk of being split up in the care system. I want to provide a stable home for those who do not have the love they should be getting whilst keeping siblings together. Going into care is rough but when you get split up from your only siblings it has got to be rough. I would teach them the value of money and teach them how important school is. I would lastly make sure that they gained a good work ethic as well. This is my first dream.

My second dream (once I had achieved the first dream) is that I would buy a second piece of land. Large enough to hold a bunch of flats. These flats would be kitted out and I would reach out the Veteran organisations. Any person who served in our armed forces that were on the streets now I would offer them a place to stay. They would be given help to claim benefits until they could get a job, get medical help, and get back on their feet. They would be helped with managing their money and saving so that they could get a place on their own. These men and women give everything for us and they need the help to get back on their feet. This would be my way of helping them. It would not be a free ride. If they were on drugs or drink they would have to go to rehab before they could take a flat and they would get into the habit of paying rent and claiming housing benefits. The rent would be kept really low so that they would not have to worry about making payments.

My two dreams are about helping the people in need. I have seen enough kids fall through the crack and enough of our service men and women who need help and cant get it. We need to do more.

I don’t play the lottery because I cant afford it but one day if I was ever lucky enough to get money I need to do this I would do it in a heart beat. These are my dreams. They keep hope alive even in my darkest hours.

Public Vs Private

I was just in the shower thinking about this and felt that I had to share. Before I went into the shower I read yet another story about how terrible Meghan Markle is and how she is causing problems for the Royals. I just thought who cares. But also I thought why are people judging her so harshly?

We all seem to lead two lives. We lead one life in public and the other in private. One life gets seen on social media and the other one doesn’t. Don’t get me wrong if any of these stories are true then she and all the Royals from what I have read should be ashamed of themselves. The stories don’t paint any of them in a good light and that is not even factoring in the historical one which is Prince Charles and his mistress turned wife.

Then it got me thinking if we are living two lives (one in public and online and one in private) how can we as autistic people really navigate the world? It becomes harder and harder to guage what people actually want. Honestly sometimes I feel like screaming.

So let me tell you a story. Before I got diagnosed I entered the world of work. I knew I had to be a good employee. I knew my interpretation of what a good student had not faired me well but I was determined to be a good employee. But I had no idea about what that was. So from what I had guessed from my parents and TV I put a persona together that I thought was what a good employee was. It worked well, until it didn’t. I was so far from being who I was and it almost destroyed me when I thought about things like, why did I struggle with Christmas Meals? Why could I not last more than a year or two in employment? I felt defective. I felt like a failure. My public image seemed to be a failure.

Skip ahead to 2018 when I got my diagnosis and everything clicked. I had struggled with Christmas do’s because I did not feel comfortable with the people I worked with and struggled to interact with them. I struggled to build relationships with people because I could not understand their intentions. Suddenly I felt less of a failure and more inspired.

From the date of my diagnosis I made a vow. I would drop that persona that had failed me in the past and I would just be me. I would learn about what made me me and live as openly and honestly as I could. When I wsa getting over stimulated I would make it known so I could take the breaks I needed. I now educate my team on what works for me and what doesn’t. Even today, a colleague kept saying give me a second, give me a minute, I will call you in 5 minutes. So, I said to him it is best not to say that to me because I was timing those time periods and then shut my skype off after because you didn’t call. He honestly hadn’t realised it was something that might get to me..

I am not saying to be someone or something your not in public. What I am saying is bring as much of your private self into your public self or vice versa (depending on which side is the nice side of you) This way, you will be happy with what you put out there and less people will critise you.

Helpful tip for autistic people on social stupidity (my name for it as I hate saying socially awkward) Find someone who is not on the spectrum that you trust. When you have something that you do not understand you have a trusted person you know to steer you in the right direction. It is so important that you have someone like this you can speak to so that you don’t make bad choices this especially goes for dealing with the opposite sex. I have about two of three people I can go to that I can speak with and know they will give me impartial advice on what is a good course of action if I do not know what I should do.

Honestly without my goto neuro-typical people I may of made a bad mistake today :S

sory for the ramble I needed to get this out before I went to sleep.

Living alone can suck but, you can ask for help

Living alone has its upsides. But when you are poorly there is nothing that you want more than to have someone look after you. Someone who will make you feel better and get you things that you need.

This is the first time I have lived alone for a long time and honestly this bug that I have had for two weeks. There has been times that I wished that I had had someone here to take care of me.

I am loving living on my own because I have been dependant on people for my entire life and with my disabilities getting worse I knew that if I didn’t live on my own soon I would get to a stage where I could never ever live alone. I did not want to be dependant on people forever.

I will honestly tell you this. If I do not get rid of this bug soon I am going to go absolutely batty.

Just remember this. Living alone does not mean you should not have a support system in place.

When you are autistic living alone can cause some problems. One of the things that can cause problems is when you get sick and you do not know what to do. Just remember reaching out for help is not a bad thing.

We have a THING!

I have often wondered about the different communities we find ourselves in and wonder how we all survive. What I have realised is we all have a thing.

Now for the purposes of this conversation I call communities based around gender, sexual orientation, religion, disability, ethnic background. Each of these communities exist for each characteristic. I do not mean community as in where you live.

For a long time I used to think that the disability community did not have a thing. The thing is the one thing that you can say but people who do not belong to your community can’t because they don’t understand it.

I started buddying up with a disabled colleague who was having a hard time at work. We try and catch up once a week to see how the other is doing and make sure that the world has not exploded. Today she was telling me about an awful screw up her doctors had made with her medication. I couldn’t help but laugh because I had been in a similar situation with a dodgy GP previously.

As I usually do because of being autistic I said “sorry I should not of laughed”. Mainly because I was not sure whether it was acceptable. I get nervous, even with friends, whether I am doing or saying the wrong thing. Now that I know I deal with Autism, I know understand why I struggle but doesn’t make it easier now that I do not have a support worker guiding me through these things.

Anyway she turned round and said, “If someone without disabilities had laughed I would have told them off, but I bet you know where I am coming from”. I explained that I did and told her what had happened to me and we giggled for about 10 minutes about the whole thing.

It did get me thinking however, this is something that the disabled community has as our thing. We can laugh at, or make jokes about our conditions whether its something like dyslexia or fibromyalgia. We can laugh at it but those who do not have it, they cant because they don’t know what it is like to deal with these condition.

However, I ask, has it become too taboo that we can’t make fun of ourselves to make us laugh?

I deal with mental health issues, when I have a bad day or when I see someone is uncomfortable about talking to me about it I make a joke about it. I tend to do this a lot. I get called crazy a lot (mostly from when I am having over stimulated moments I tend to go a bit Cray Cray) but to make someone feel at ease I say “I am not crazy, I am depressed. I don’t take anti-crazy pills I take anti-depressants.” This tends to get the conversation started. I even know the official medical diagnosis of depression so I can give as many facts as I can to people.

However, for every person who becomes comfortable talking about mental health from talking to me in the way I do, you have at least 1 out of every 10 conversations where I am told “You should not laugh at your mental health, it is serious”. I tend to think that these people either have not had to deal with mental health or if they do then they subscribe to the “mental health is a shameful topic” theory.

Has the world become so PC that we can’t talk about things that affect us how we want?

If anyone struggles with disability either theirs of a friend and needs some tips on how to broach the subject please email me at suzefricker@hotmail.com The email at the top of the page does not work so use the one here.

I am not a campaigner

I am not a campaigner!

I know this statement sounds strange but the truth is I am not. I do not believe the world owes me something because I am autistic, dyslexic, with depression and spinal problems. I know the world does not work in a way where those in need get what they need. However, some people think that because I blog that I am a campaigner.

The truth behind what I do however, is not so much campaigning but more PR.

The disabled community has two things against them.

The first thing is that when someone with disabilities wants to work it is hard to find someone who will hire them. Obviously work places can not discriminate on disability grounds but we all know that if two candidates with the same qualifications and experience go for a job, it is more likely that the one without disabilities will get the job.

Then if someone with a disability gets a job they lose the support that they need to survive from the government. There are benefits that I could be on with advice given to me that if I stopped working I could get them. But unless I am willing to give up work I am not allowed them. How fair is this? Your telling someone who wants to work who would be entitled to the benefit that they have to loose the purpose in their life to get the help they need.

The other thing we have against us is our own community. There are people out there juts like in all communities who will say “fuck it I am disabled I don’t have to ever work again”. Because of this attitude when they are made to work they leave such a bad taste in their employers mouths that the next person who has that disability will get “oh no not another one”.

So what can we do?

I choose to role model myself in to how I would like people to view me both personally and professionally. I tell my team what sets me off, what of me can be changed and what can’t and I have open and honest dialogue with people.

I tell everyone that if I do something to upset you then I need them to explain it to me not just say “oh she is autistic” or “she has depression”. This works for no one.

I am as open and honest as I know how to be so that when the next person has my job, if they have depression, autism, physical disabilities, dyslexia the word my team say is not going to be “oh not another one” but in fact “Yes we have another one”.

Only we can change how people view us. Only we can show them that we are as good as those without disability. We don’t need campaigners, we need people willing to go out and show the world, disability does not mean we are useless.

So my challenge to all those with disabilities. Go out, find a way to show the world the amazing things that you can do. Show the world your amazing gifts that your disability gives you. We all have something. Don’t hide it but show the world the amazingness that is you.