Year of Wellbeing Blog: Ade's story
5 December 2018
Everyone has their own story to share about ways they have found to care for their own wellbeing, and the wellbeing of other people.
A team of bloggers have agreed to describe their personal journey. We hope their stories help and inspire others during our Year of Wellbeing.
It is not my imagination, I didn't choose this!
I have an illness, it is not a virus, and therefore it is not contagious to you. I have a mental illness. At first I was diagnosed with Panic Anxiety and Depression, labelled ‘PAD’ by my GP. I remember, this freaked me out at first because it sounded like ‘you have MAD’ the first time he said it to me. I was later diagnosed with Complex Post Traumatic Stress Disorder, with psychotic episodes.
My name is Ade. I am in my fifties, I happily tell you my age because mental illness can affect you at any age and remain hidden for years too before it hits you.
For me, an important part of my personal and ongoing recovery has been the process of making sense of my experience on my terms, to be the author of my own recovery process. So I volunteer as a peer support worker / tutor for Coventry and Warwickshire Partnership NHS Trust’s Recovery and Wellbeing Academy. I strongly believe it's important for others to know and understand mental health. There is still far too much stigma associated with it. They say ‘knowledge is key’, so by sharing my story or educating people via the Academy and yes, talking openly in general about mental health, I firmly believe we help change the way people perceive it.
Quite simply we must never let ‘the conversation’ stop, the more that know and understand, the less isolating the journey will be for the next person who is diagnosed.
Trust me when I tell you: This isn’t my imagination playing tricks on me.
Fact: To imagine you really have to bring a picture into your mind, for example you look at your living room and you try to picture how it would look painted blue. That’s quite easy to imagine, right? That is because you know what your living room looks like and you know what the colour blue looks like. You choose to imagine this.
So when I say I see an old lady stood at the back of a room arms crossed and shaking her head shouting “Shame on you” or “You’re bringing more shame on the family”. It is not my imagination, I didn’t choose this.
Do you seriously think I want to hear her going on all day, along with the other voices I live with? These only ever multiply in volume when she is agitated by me ignoring her. Quite simply I don’t know who she is and why she says what she does, but she claims to be family.
Anyway, try this for size: Most of us at some time would have gone to a music concert at say the NEC or NIA or a music gig in a pub (noise!). Imagine then that you don’t like the music being played, you may become p***ed off or even annoyed (agitation!). Now right in front of you, the person turns round and starts shouting, mistakenly shouting at you (more noise!), this then causes the person behind you, who actually triggered the person in front to turn round, to start shouting abuse back at them (even more noise!). You are now surrounded by noise!
Dealing with the above, hour after hour, you now try to concentrate on something. Imagine trying to hold a conversation with the person next to you with this all going on at the same time. The fact is, the person you are trying to have a conversation with is not aware of the noise you are dealing with nor hearing any of it themselves.
Throw into the mix the need to control any agitation you feel. Made worse if you generally are an intolerant person, have high expectations, little patience and an overwhelming desire sometimes for perfection, not just from yourself but others. You will understand then why you will suffer a surge of anger, agitation at what is going on in that moment of your life, but this is just an example of our own intolerance that we have to control constantly, right?
You would not believe the overwhelming feeling I felt when discovering that it is an actual disorder. You begin to think it is treatable…relief!
Cognitive Behavioural Therapy sessions have helped me learn and research the tools to control the volume levels. These so-called solutions are occasionally helpful. But some of the time, my efforts are entirely ineffective.
Over time I have learnt things to control my condition that are better than any medication, when I tell people that I don’t drink alcohol, for example, they stop insisting on buying me alcohol. Of course I don’t see this happening any time soon, if I tell people to stop doing the things that trigger the voices to be even noisier.
So until medical science comes up with an operation that can control the voices, I’ll rely on me and my headphones (music) occasionally.
Although I’m an innocent victim of a sometimes hopeless and annoying affliction, my mind may be tired, my heart may be tired, my soul may be tired, but I’ll keep on, it’s important not just for me but others on a similar journey.
Click here to find out more about Coventry and Warwickshire's Year of Wellbeing 2019.
