No. I am struggling.
Adventures of Pom
My life with my disability.
Thursday 4 May 2023
Are you Coping?
Friday 27 January 2023
Life At The Moment
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).
Sunday 12 June 2022
Getting Some Klarity On My Situation
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 jobs that I was qualified for but because I have not worked for 11 years and I did not know how my physical condition would be affected, I decided that it would be sensible to start with an unpaid internship. Unpaid to keep the pressure off while I figured out if I could cope and an internship to give me work experience and to get me used to working again.
I applied to Klarity.oi for a 6-week internship as a content writer for their new online medical library.
All the people that I met there were nice and supportive and I am proud of the articles that I produced. I know now that I could not hold down a job permanently, it was just too much for me. I found myself getting too tired and that it affected my disability negatively but I am pleased that I gave it a go and I am really happy with the articles. Below are links to the website via my articles. Please have a read and and check out the rest of the website:
What Happens When Your Heart Stops
Grey Skin Colour Heart Disease
How to Optimise Sleep for Health and Performance
Saturday 23 October 2021
Building a Future
I don't like being called an inspiration.
This affects many parts of the body from walking to balance, from speech to continence and even vision.
Angus decided to fundraise for a lightweight chair to help him reach his dreams...and keep up with his friends!!
Determined schoolboy hopes to become wheelchair moto cross star.
Angus’ videos on social media and resulting media coverage became widely seen and he had the opportunity to meet his heroe's, Aaron Fotheringham and Lily Rice. Photos below:
Angus has grown and now needs £7000 to continue and fund a new WCMX chair. Any support is appreciated.
A Facebook Fundraiser can be found using this link. Even a tiny donation adds up and anything you can give will be gratefully received. Even just sharing the links helps reach more people.
Sincere thank you's for all support.
Tuesday 7 September 2021
Be the Flame
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 people at home to be able to have contact with others without even leaving the house.
Remember, you are human.
You have faults and this is a human condition. You might have more than others to deal with because of your disability but don't forget that everybody has these faults and it is not just you.
Remember, the others are human.
It is easy to get lost in your own head but remember to peek out at others, be understanding and patient. Remember that just because you cannot see somebody's disability does not mean that they are not struggling.
Smile.
A smile can go a long way A smile might be the only interaction that an individual needs that day to make them feel better. A smile costs nothing to give and not only makes you more attractive but makes those around you feel happier.
Be the Flame.
This simply means that when you are feeling as good as you are able to, then you come across to others in the best possible light. The simplest way to do this is to do the little things that make you feel good, don't be afraid to wear the dress/shirt that you have been saving for a special occasion or to put on the aftershave/perfume that you like to wear when going out. Put on that special piece of jewellery that you don't usually show off. The idea being that if you do the things that make you feel special, the good feeling will spread and this will attract others to you like moths to a flame.
Be the flame.
Monday 21 June 2021
Unexpected Side Effects and Gratitude
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
Wednesday 27 January 2021
Vaccines and Fear
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 might be able to go outside normally again and see the family and friends that I really miss.
My experience was a lot better
than I thought it would be and even showed me that many of the myths
surrounding the vaccine are not true.
I used the link provided on the
text to book in for my vaccine and it was a very easy process. I just had to
provide my date of birth and then pick a convenient day and time.
When I turned up at the surgery,
there was a queue but because I am a wheelchair user I got to use an
alternative door that was easier for me to get in. Otherwise people are taken
on a first-come first-served basis.
There are 5 people in the room
and each vial of vaccine is enough for five or six people.
The nurse administering the
vaccine was my diabetic nurse and the doctor supervising was my old GP who had
come out of retirement, voluntarily, to help. This really made me feel better.
I had the Pfizer AstraZeneca vaccine and after I was injected I was given a sticker with a time on it and I had to stay until the time was up (15 minutes), just in case I had a reaction. I did not and nobody I saw that day either.
Here are the fears I had and from
my experience do not appear to be true:
·
The vaccine contains a microchip.
The only time in which I
identified myself was just before I received the vaccine, so that they can take
note of who was being vaccinated.
·
The vaccine will change your DNA.
It is not possible for a protein
vaccine to alter DNA. It will provide further instructions to your RNA in order
for your immune system memory to remember the protein to fight covid-19 should
you ever get it.
·
The vaccine has content tailored just for you.
I received the same vaccine as 5
other totally different individuals. Different ages, ethnicities and genders on
a first-come first-served basis.
·
The vaccine will make you infertile.
Firstly, I don't really mind if
it did because I never plan on having children but secondly it is highly
unlikely that a protein-based vaccine would have this capability and there is
no evidence so far for this to be true.
·
Having the vaccine will give you covid-19.
It is protein-based and this is
impossible because you are not being injected with covid-19.
The side effects of having the vaccine will make you really ill.
I only had two side effects and
they were that my arm, where I had the injection was a little tender for the
evening post injection and I felt a little bit achy.
I do know some people that have
had a little bit of nausea, headache or a little bit of a fever but that only
lasts for the evening and like me, they were fine the next day.
I hope that by sharing my experience
people will be a little bit less afraid if they decide to have the vaccination.