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

Life with multiple disabilities

Living life with a disability is hard. When you live a life with multiple ones can at times, be unbearable. I have 4 disabilities, Autism, Dyslexia, Depression and Spinal problems. It is something that at times can regularly come into conflict with each other. When I have a really bad day with my back I stay indoors and do what I can to ease the pain. The problem comes when the bad day lasts longer than one day and I have to stay indoors for longer periods of time. I start feeling low, my mood goes and my self-care goes out the window. This then causes my depression to go out the window.

With my autism, when I have a meltdown it can have a negative impact on my physical wellbeing and then the above happens again and again. It can be quite maddening. I am trying very hard to live my life but it also seems like there is no support for people in my situation 😦 But, we can survive. We can move on. We can keep the wheels turning but it means that we must keep fighting. Life is not simple however we can survive it.

 

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Depression – Helpful advice

Having dealt with my depression since 2007 I can tell you one thing that you should do to help keep yourself on track is to have something to look forward to. The reason why this is important is that we need something to keep your mind to good things. For me, I am able to say this 3 weeks until I have the opportunity to go and watch Giovanni Penice perform and I will get to meet him too. This has got me so happy and honestly, I am going to be able to go with a good friend. It is not something that I am able to do very often so this is going to be so great. When I have a tough week at work I keep thinking this is something that will be great and I will always be able to keep things happy.

Depression is something that you can’t fight alone but having ways to cope and try and keep the serotonin pumping is to find something that you love and go for it.

Letter to Dame Darcy

Dear Dame Darcy,

My name is Suze and I have decided to write to you. I have been a massive fan of yours on Strictly Come Dancing for years and so glad that you have received an honor as well.

The reason I wanted to write to you, and I have been weighing this up in my head for a while now is because I saw part of your show on dancing and wellbeing.

I wholeheartedly agree that dancing is something that can boost a person’s mental wellbeing, unfortunately now, dancing for me is bittersweet and I will tell you why.

When I was small I wanted to be in the entertainment industry but I wanted to be as much of a threat as I possibly could and as I fell in love with acting, singing, and dance I focused on all 3. The problem I had though is I didn’t know how hard things were going to be for me. You see Dame Darcy when I was in school, I was undiagnosed as Autistic and Dyslexic with a bit of dyspraxia to boot. You may not know much but the autism made me struggle with learning things and the dyspraxia had some issues for me in terms of certain types of dance where co-ordination is vital. Ballet is a very prime example. That didn’t stop me though it did limit me in certain things, for instance, I knew I couldn’t do ballet, the contemporary classes I went to it seemed like all we did was warm-up exercises like running around like butterflies and it made no sense to me but I kept on

I even tried to do dance as a GCSE but had to change school after year 10 and the school I went to did not do dance GCSE, so I had to drop it ☹.

Unknown to me at that time as well was that I also had hypermobile knees which were not helpful when I was knocked over by a pizza delivery bike at the age of 15. I struggled for a long time with my knees after that and was categorically told over and over again that I would never be able to become a dancer I was to “damaged” and that there was no reason to pursue a career in dance.

This was devasting for me. I did not know what to do. I did not know how to cope properly (autistic) so I just stopped dancing. I went from someone who would listen to music and make up dance routines in my living room and then dance them to giving up. Now I only dance in my room with the door closed and the curtains shut so that I am seen by no one.

So now dance for me is something that is bittersweet. It is not something I do anymore and breaks my heart as well. I have considered doing classes, but I now have scoliosis in my spine and depression and every time I try and get up the courage, I lose my nerve.

But I want to change that. Since getting my autism diagnosis I have been looking at ways I can face some of the things I lost through not having support. Some of that is social and others are things I lost a long time ago, one of which is my love for dance. I want to show the world that you know what, it really is like Lauren was saying on this years strictly “ it’s about ability, not disability”. I have always been intrigued by ballroom and Latin (even before strictly) but never had the courage to do it.

 

I would love to one day meet you even just to discuss dancing and how it can help others so that maybe I could use the discussion in a blog to help inspire others. If you ever think that is something you would be willing to do that would be great – though I know you are busy and that it is a real long shot.

To let you in on a secret dream as well, I would love to have a lesson with Pasha or Giovanni or even Graziano (obviously new) but I am realistic and know that will never happen.

Dame Darcy, I would like you to keep doing what you are doing. People like me are forgotten in this world. Those of us who have learning, physical and or mental difficulties but honestly with people like you around shining a light on something that I hold dear which is dance and show that it can help those with mental health is amazing. You are a true inspiration and I am glad I finally got the courage to write this letter. Just watching your passion for dance during strictly come dancing, brings out smiles in me I thought I had lost a long time ago.

I am posting this as a blog as I don’t know how to write to you but I know I can share this on Social Media and hope that you see and read my post.

Yours

Suze

Getting the conversation started

So this week has been National Inclusion Week and one of the main things that I have learned from this week is that we need to start empowering people to talk about their disabilities, their differences as well as things that make them unique. More needs to be done to support those both inside and outside the workplace who have a story to tell but are too scared that they will be judged.

When I was first diagnosed as Autistic I wondered how on earth I would describe it to people at work. For me it made me understand some of my behaviors from my childhood however as an adult I wondered how people would take it. Luckily I had a wonderful line manager who listened and helped me out with my understand what I was going through.

Through telling my line manager I was able to identify some of the things like my issues with volume control in my voice. Every time I am anxious I was able to speak to my line manager.  Through her support, when I joined a new team, I felt confident telling them I was diagnosed as Autistic. The main thing I tell them is that if you notice something to please tell me. If I am told constructively I am able to take it however if someone has a go at me when I struggle.

With the autism, I have come to understand some of my strange behaviors. An example is that I have gotten hooked on “A Discovery of Witches” to the point where I have watched the first 3 episodes again and again and am desperate for next week to come so I can watch all 4 episodes. Before people would tell me I am strange and odd for it but I have come to understand that there are things that I love, for instance, mystical folklore, crime, and cartoons. This is just something which is my specialty areas. Because of the Autism, I tend to fixate on them which is good to know. This is helping me learn more about me and helping me to grow. I am still working out how it all works with me and I am trying very hard to grow into a more confident me but honestly, it is a challenge.

As a dyslexic, I always knew I was struggling with school. I was often told that there was no problem with me, it was just that I was not applying myself. It knocked my confidence in everything and I honestly did not even believe I would get A-levels. It took one school to really take an interest which helps. One teacher I had in particular who helped me out was Mr. Phillips. He would go through my bad homework and give me the chance to redo them. He would not change my grade but it helped me get the work up to standard. Because of him, during my A-levels, I was able to get a B in sociology. This was a very big accomplishment for me as it is a pure essay writing qualification.  Mr. Phillips helped me out so much. I honestly wish I knew where he was now so that I could thank him.

Depression is a hard one for me especially as I live with it every day. It is hard to put into words but there are just days that I do not even want to get out of bed. I want to hide under my duvet and let the world pass me by. The problem is is that I know how bad I used to get when I was first diagnosed. I took a penknife to my hand. I do not ever want to get to that state again. I try and be open about it, however, it can be hard as you wonder how people will react when you do. I know that there are people out there who will treat you like glass and they will amend the way they interact with you which is not very good. For me when people are around me being themselves it is when I almost feel alright.

Now honestly, being 32 with spinal problems is a terrible thing. It honestly makes me think I did something bad in a past life but honestly, I am hoping that I will be able to get myself to a stage when I feel confident about it. I just hope that it would do a lot better sooner rather than later so that when I am older I won’t have extra problems.

Yet, with all I have to deal with, I do my best to get the most out of every day.  I try and live my life in a way that when I look back at it I can be proud of everything that I have done. There is still so much that I want to do with my life and hope, of all hope, that I will get it done.

Let’s Talk About Dementia

Dementia is a vile, evil ilness which is known as the Long Goodbye. It is something that takes you away piece by piece until there is nothing left except a shell waiting to die.

My father also has dementia. 

Over the last few years, I have seen this vile illness strip away pieces of my dad. He went from being an unhealthy person who went out, met people and enjoyed music to someone who it is a struggle to even get out of bed in the morning. A huge turning point for us was when he lost his drivers license. That was a lifeline for him and it was taken away.

It’s not all doom and gloom though. Last night I got to see my dad do something I hadn’t seen him do in years. That is, pick up a guitar. Now you may think that this is something minor however, my dad is a musical man. He could have gone all the way. The man could recite songs on his guitar without music or anything else. He was a musical genius. But with the illness, he doesn’t play anymore. So to see him pick up a guitar honestly I felt like crying tears of joy. The glee in his eyes and the joy in my hear made me want to cry my eyes out. I did manage to hold it in till I was not with him but honestly cried like a baby.

So enjoy the time you have with the loved ones you have because honestly this illness can break your heart x

I’m not Crazy, I am depressed

 

For me, this worked wonders. I found that if I was able to make light of the situation I found myself regarding my mental health then people around me would feel a lot easier about talking to me about it.

My way is not the best way may be to take the stigma out of Mental Health but for me, it works. I have always been known as somewhat of a fruitloop doing things because I wanted to do them, even if it was not what was expected of me. Take my Thank You Campaign, I do it because I want all people who serve in some form of uniform to know that there is at least one person out there who supports them. This is not seen as the norm but I don’t care, it makes me feel good and therefore I do it…

Each person’s mental health issues are unique to them to find a way that is suitable for you to broach that subject.