GUILTY!
I would employ anyone who has the strength to survive the
daily challenges of a disability or illness!
A confession: I'm a bit of a bugger for hiding how
I feel and hiding the Meniere's disease. I do really try not to hide it, but it
is hard to break a habit of a lifetime. I think it comes from living with years
of ridicule and being around people who jump on your every weakness, failure
and mistakes using them as sticks to beat you with. It's given me second
thoughts about sharing the illness and its effects. However, it adds more stress
by trying to hide it. Plus, why should I? It is part of me, not by choice but
it is here, ever present and becoming more of a menace every single day.
As well as personal insecurities, the hostile
environment towards people with disabilities and invisible illnesses, created
by this inhumane Tory Government, makes it almost a taboo subject again. We
have travelled back to the dark ages where anyone who is not "normal"
should be hidden away. Bulls*it!! Sorry, but it is. I'm not having self-serving
politicians who, let's face it, the majority of which have never had to
struggle for one day of their lives, tell me I'm on the scrap heap, a burden to
society, a scrounger! I have an illness I have no control over! I did not ask
for it. It is NOT a lifestyle choice. I paid my taxes, very high taxes during a
very long career before Meniere's.
I work hard. I don't do a "normal" job
not because I do not want to. I do it because I'm seen
as unemployable by
ignorant, unscrupulous capitalists. My illness is so unpredictable; I can't
even commit to one hour let alone a day, month or year. I need to regulate how
and when I work. Does that make me less of a person or less of a contributor to
society? Why am I constantly being made to feel guilty?
Daily symptoms |
My boys totally understand how this illness
works… they live with it everyday too. They muck in when needs be; let me sleep
when I need to and have hugs and cuddles on hand when it is tough. I've felt
guilty bringing them up, worried they would see me as a failure – thankfully they
see past the illness and see I am very much a fighter, a warrior and someone
who will never give up, no matter how tough it gets. This world may not be set
up to cater for people like me, but I'm sure as hell going to fight to make it
so.
I saw the Consultant on Tuesday and discovered,
whilst my hearing has not deteriorated, I have developed severe Migraine on top
of the Meniere's Disease. I've got the stage where I do not really care what it
is called, I just want to be able to live a reasonable life. The worst part of
Meniere's is not being able to plan anything or having to cancel short notice.
I was
not sure whether I would make my Masters (MSc) graduation. The day before I was totally off my feet. The ground was moving; the room spinning. Even on the morning of the graduation, I was not sure what to do. I forced myself to go… had to ditch the new wedged heels for flatties! But, we went, and I was so proud to have my boys with me.
not sure whether I would make my Masters (MSc) graduation. The day before I was totally off my feet. The ground was moving; the room spinning. Even on the morning of the graduation, I was not sure what to do. I forced myself to go… had to ditch the new wedged heels for flatties! But, we went, and I was so proud to have my boys with me.
I also had to cancel an over ambitious trip to
London and accept there are limitations to what I can do. Instead, I went to
Haworth to celebrate Emily Bronte's 200th birthday.
Wuthering Heights has a very special place in my journey. In 2011, on Boxing Day I finished reading it again and started to have a go at writing myself. I wrote for three days before my family asked me what I was doing. The new chapter of my life began (pun very much intended).
Emily's desk |
Wuthering Heights has a very special place in my journey. In 2011, on Boxing Day I finished reading it again and started to have a go at writing myself. I wrote for three days before my family asked me what I was doing. The new chapter of my life began (pun very much intended).
Author
stuff
Talking of books, if you follow me on social
media, you will have been bombarded with details of my new website and my
latest release.
New Website
I've totally re-written my website. I keep
adding to it, but it works, and I love it. See what you think here.
Beyond
the Past
It is hard to believe this was released in 2014 and is still being bought today, with a new 5* review only this week.
Beyond the Lies
This was finally released in June 2018. This time, I self published using Lulu.com via Publish Nation. I would highly recommend their very professional service especially, if you're like me and like to have a say in everything – I know, you wouldn't guess this, would you? LOL.
I have created my own promotional videos too.
These can be checked out on my own YouTube channel – check me out!!
In between marketing, I am writing my new novel.
PhD Study
PhD Study
The next chapter starts in October with my PhD.
This is a very personal target. I have really pushed myself this far and intend
to continue for the next four years. I may not be able to commit to campaigning
in politics, but I can contribute by, hopefully, helping young people to
maximise their computer science skills ready for the changing world. Well, that
is my aim.
I am incredibly lucky to have the flexibility
to rest and sleep when I need to and work when I am well, whether this be at
6am, 9pm, 3am. One huge lesson I learned from Meniere's is, time is incredibly
precious. Every good minute should not be wasted. I refuse to let anyone tell
me I am not a valuable member of society.
I'm truly blessed with wonderful boys and
wonderful friends who have all taken the time to try and understand my illness
and my flaws. One of the kindest people I have ever met, asked me "how can
someone help whilst you're suffering your symptoms?" It is the most
sympathetic and supportive anyone has been without being patronising. Surprisingly,
no one has ever asked me this before.
My response, "just be there with love and
hugs".
Please be kind. Do not buy into the hostile
environment, don't judge and support people. I refuse to be made to feel guilty
because I am different; I refuse to feel guilty because I have Meniere's Disease
and I refuse to feel guilty because this world cannot accommodate me. I am
guilty of being a stubborn fighter. Instead of giving up, I will fight for
every human being to have their rightful place in society… as equals.
Much love
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