My missing records

A back to back personal blog, but this was very much on my mind today. All my blogs are based on an experience, around a memory, stretching as far back as a little girl.

It will come as no surprise then for me to recall my experiences based around my yearly consultations. Even as a small child I was aware of each conversation. The conversations between my father …

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15 Jul, 2018

My hemiplegic symptoms

As a toddler I was originally incorrectly diagnosed with spastic monoparesis, because I have two limbs affected, not one. Since I started my Diary, it’s often been difficult to uncover the official correct diagnosis, but feel I have managed that now.

First discovering at the age of 46 that I had cerebral palsy and through my own research evaluating my symptoms, I finally have the correct diagnosis, which is ‘cerebral palsy hemiplegic.’ Hemiplegic …

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14 Jul, 2018

My beautiful mind

I find it comforting that my weird but beautiful mind is the reason I am able to articulate my thoughts in the way that I do.

When Chris Packham, A BBC Natural History Presenter, talked about his traits in his television documentary, commenting that he wouldn’t be as successful as he is without Asperger’s. He was in …

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10 Jul, 2018

Not a textbook case

When it comes to disability, and a diagnosis, we need help with understanding how the symptoms to the diagnosis will manifest itself in every day life.

Sadly, unless you’re a typical text book case, doctors and consultants have no idea how someone with a disability will live their life. Doctors present a future based on a diagnosis and not on the child …

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6 Jul, 2018

A little too late

There are some things that are a little too late for us to make amends. When anything becomes too late, the events that should have taken place in that time move on, as do those we’re in touch with to make those things happen, as ‘my story’ shows.

With any potential new findings years on, a different thought process is needed, not only to deal with the new information, but the loss of what we’ve had to leave behind. It’s often too late for people like me …

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3 Jul, 2018

Feeling irritated

Although subconsciously I always wanted to know what was wrong with me, up until mum became terminally ill I never consciously thought about it. Perhaps I had already resigned myself to the fact that I knew it wasn’t an option, whilst my circumstances remained the same.

As a child I assumed my family didn’t know my diagnosis; that none of us had any answers. I wasn’t angry because of a non-diagnosis, I was angry because my disability was ignored as I continued …

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29 Jun, 2018

Getting a grip on anxiety

Not knowing I struggled with anxiety throughout my childhood years is the hardest thing I’ve had to come to terms with, knowing why has made it all the worse, because it’s something I know I will always struggle with.

Although being aware that I deal with anxiety helps to some degree, there is still concern that I have to fit into other people’s expectations of how they think I should deal with it. Where my sensory …

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25 Jun, 2018

The counselling scenario

Going into counselling when you have no idea what’s wrong with you doesn’t help you understand your life, let alone make for a productive counselling session.

Counselling was never going to work for me, because the very thing I needed to know that tied my life together had been kept secret for 46 years. Truth be known, every conversation, every session I …

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22 Jun, 2018

Travel & chronic illness

There is no getting away from the fact that I deal with a chronic and acute illness. I tend to have to work at staying well, because I am not guaranteed wellness.

When it comes to travel, any road trip or holiday feels like a burden. It can also feel like a no-win situation, because when I do travel, I have payback later. No matter how meticulous I am …

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18 Jun, 2018

My education

I remember having an intelligence test as a child because doctors needed to work out whether I was mentally retarded or not. It’s only now that I understand why I had the test. I now know the test I should have been given was a standardized intelligence and standardized adaptive skills …

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16 Jun, 2018