Adventures of Pom

No. I am struggling.  My mental health is negative and I am not coping well.  This is a difficult problem to confess because I have spent a lot of time trying to ensure that my blog puts a positive spin on living with a disability however the reality is that it is impossible to stay positive all the time. Reality can often make life difficult and present seemingly insurmountable objects directly in front of us.  Case in point: an insurmountable object (sorry random guy), see below my photo from March 2023. My view of the stage from the wheelchair space at the New Theatre in Oxford, sometimes the objects in the way are literal not just figurative: (After complaining, the New Theatre have refunded my tickets and have pledged to build spaces down the front of their auditorium. Let's just hope that their pledge is more reliable than one from Amber Heard..!) My gradually degenerating physical condition is the biggest obstacle. It effects everything in my life an...

I wrote this as a guest article for Ataxia UK volunteer magazine, however due to my own weird personal circumstances at the time, I requested that they did not use it and it has been sitting in my files ever since. Upon rereading it I actually quite like it and I have decided to publish it on my blog, I hope you like it too and perhaps it will raise a little bit of awareness. Being born in the 80's meant that being misdiagnosed was common due to lack of genome testing and specialist knowledge. I went through several incorrect diagnosis' before I was given the correct one at age 7. Friedreich's Ataxia (FA). Having FA means that every day is a constant battle between my brain and my physical body.  My brain is a motivated, energetic geek who just wants a good life.  My body is a tired, weak, depressed stoner with constant brain fog. My personal war between brain and body has been waging for just over 42 years and I am pleased to say that despite it getting increasingly diff...

Since 2020 and the horrors of the Covid-19 lockdowns and shielding (when people were dying and terrified but no.10 was a party zone), there has been a rise in remote working. This was initially an inconvenience but for some people who cannot leave the house or find it difficult for reasons such as transport or physical condition, the rise of remote working was ideal. So, I thought, what if I could? What if I could, once again, be one of the working masses? The short answer is unfortunately, no I cannot do it but I am, however, very proud of what I did achieve as a result. For more detail, read on. I finished paid employment 11 years ago and this was due to the negative advancement of my physical status. I could not no longer keep up with my responsibilities. Now I do voluntary work a few times a week and I began to wonder whether I would be able to take on paid employment remotely. I joined LinkedIn and had a look at some of the available positions. There seemed to be plenty of remote...

 I don't like being called an inspiration.  I am not.  I get called that for simply living my life with my disability. I'm not doing anything special, I'm just kind of getting on with things, like most people. Just because some things are harder for me than they are for the average individual does not make me inspirational.   Not one single person on the planet does not have some problem to deal with, emotional, mental or physical. Going through life does not make you in anyway an inspiration.  I have written a lot about the importance of having a goal, a dream. Something to aim for, aspire to. Build your own future.  My nephew, Angus, inspires me to do this. He is not an inspiration just for living everyday with his disability, he is inspiring because he uses his situation to the absolute best of his ability. He aims to show everybody not to accept their own limitations without putting up a fight. This is a valuable lesson that we can all learn from. ...

  It is difficult to not just withdraw from life.  A pandemic still ravishes the Earth and I am still just going day to day!  I am certainly no expert on how to cope post lockdown, my mental health can be dire at best, but here are my 5 suggestions how to move forward with:      Socialise. Unfortunately fairy tales do not always happen. Neither a relationship, nor your true love, is just going to appear on your sofa whilst you binge watch Netflix. You are going to actually have to get your hands dirty and interact with people. I know that the idea of this sounds horrific to the people with social anxiety and the first step will always be down to you. Even this may sound scary believe me the benefits will be major. Not only will socialising raise your confidence, you will also be able to make new friends and meet people you would never usually have met.  Although there is no substitute for real face-to-face contact, social media and video chat allows ...

 Last year I spent some time making a video for  Ataxia UK  detailing most of the manky things I have to do everyday and how I cope with my disability.  Watch it here:  It Works For Me I have no intention of becoming a vlogger (I am certainly no where near as good as Joe Tracini !), the effort was a lot even though I did enjoy it. Through the praise and thank yous' I received through honestly portraying my daily life I learnt that your own actions, however small, can have unexpected side effects. Good ones. Always be kind. Pass on the positive. A mention in a blog by one of the strongest men I have met: Not Ashamed Anymore by Richard C Brown MBE

Even after shielding for almost a year from a potentially deadly virus that is threatening mankind, I was unsure whether I wanted to be injected with, what is hopefully, a vaccine. The world is in the grip of a viral pandemic, covid-19, and I am considered clinically extremely vulnerable because catching it would likely make me more ill than most people. Life threateningly so. Fear is my new normal. I have a few disabilities that affect my immune system and physical functions. I also have stage two heart failure. My reluctance to have the vaccine was due to my own reluctance to have foreign things injected into my body and of the alternative media coverage coupled with my own distrust of the Government. When I received the text from my local surgery asking me to book in for the vaccination I was literally in two minds about whether to do so. After much thought I decided to trust my primary instinct and have the vaccine, with the idea that maybe in the future, at some point, I...