Saturday, 30 September 2017

Being Single and being an Outsider

Relationships are tricky things even when you are not throwing a disability into the mix.  I mean I have so much to cope with in my everyday life plus I want to find time to live and do everyday things that having a personal relationship never actually seemed a priority.  At least it didn't for 17 years and it still isn’t but there has been a change in my attitude, for the better I think though maybe I’ll just let you, the reader, decide how healthy my point of view is!

For 17 years, I have felt completely happy being single. I did whatever I wanted to do or at least as much as I am capable of doing and I kept up with my hobbies.  So, I have to ask myself what has changed?  There is a one word answer to that:


This year I have had a few health problems and my overall condition has declined.  In some ways, I would say that this decline has been significant and there have been many issues for me to deal with.  Seemingly not the optimum time to think about personal relationships eh!  But, hey, when is?

I have always felt a little bit on the outside of everything but to be honest that has never really bothered me at all.  I even think that, that might just be me and not entirely due to my disability.  Then during a random web surf, I found the Outsiders.

The Outsiders is a peer support group for disabled people, to assist and enable people to form friendships, relationships and date.  The only relationship that I was interested in forming was friendships and by joining the Outsiders, I have got that in buckets (I’m sure there is a pun there!) and I have made some fantastic friends some of whom, I am sure will be my friends for the rest of my life.  My online social life has never been so busy and seeing as though my disability is currently being unpredictable, the online support I am receiving is priceless to me.

As already stated, relationships in any form can be difficult; friendship's, partners, lovers and intimacy are never completely easy for anybody but if you add a life changing disability (whether physical, social, hidden or visible etc.) into it, then there is whole different ball game of confusion to circumnavigate.  This is why peer support through the Outsiders is invaluable and made me feel confident enough to experience a (small!) personal relationship for the first time in 17 years.  Needless to say, it did not last longer than two months and did not end in the greatest manner (do they ever?); I am single again but I did survive it.  It did a lot to boost my confidence and show me that despite my horrid physical disability, I am not as hideous as I thought!
I feel that I now know more about myself and what I am looking for should I come across a potential partner.

Somebody who will never give up on me.

(too much to ask??)

Isn't that what everybody is looking for when they actively search for somebody to spend the rest of their life with?  I am not sure that I am ready to try and ‘actively’ find someone for me to spend the rest of life with, I am more of a ‘see what crosses my path’ kind of person.

I have had the good fortune and amazing privilege of meeting and volunteering for Dr Tuppy Owens the relentless driving force behind the Outsiders, SHADA and TLC, which together help disabled people to have and experience full relationships both emotionally and sexually.

I am now voluntarily offering my assistance to Tuppy in writing her autobiography which I hope is helping her in some way and I am contributing to the Twitter feed for the Outsiders.  I am not that confident on Twitter yet but I am learning.  I have over 700 followers on Twitter for the Adventures of Pom and so I am hoping that I will be able to help the Outsiders in return for all the help they have given me in raising my social life and my confidence.

The Outsiders has also given me future goals to aim for such as figuring out how I can attend their lunch events opening my world up to lots of people that are welcoming and wonderful.

I recommend the Outsiders to everybody, not just disabled people because it is all inclusive Community.

Monday, 6 March 2017

Sometimes Life is Hard to Swallow - Guest Blogging

Not a lot of people know the word Dysphagia.

The dictionary defines dysphagia as difficulty or discomfort swallowing as the symptom of a disease or condition. Dysphagia is perhaps the largest reason preventing the adequate nourishment of many people and can be life threatening.

I do some voluntary admin for Dysphagia Matters who aim to raise awareness of this and offer training courses to combat this.

They are launching their new blog 'Dysphagia Chronicles' to coincide with European Swallowing Awareness Day and I am their first guest blogger!

Please follow this link and have a read: Dysphagia Chronicles

also contact for more information if you are interested in being a guest blogger.

Thursday, 2 March 2017

Quality of Life

My close friends will know that I have had issues with my Care recently and I have had to have my number of agency calls and my care budget significantly increased.  This is no one’s fault and indeed, would have inevitably happened anyway.

However, it left me with two things.  A sense of not being in control of my life or anything at all (an extreme fear of mine!) and having to directly and openly assess what my quality of life is and what I need to maintain it at the level I want.

Quality of life (QOL) is the standard of health, comfort and happiness experienced by an individual.  This can be measured using many factors including physical health, family, education, employment, wealth, the environment, religion.  Social services produce an annual care plan to not only ensure that my basic physical needs are met, they also ask many questions in an attempt to quantify and record my QOL in accordance with their own agenda and using their own general criteria.

I am not going to say that this is wrong, I think this is a good way to begin assessing an individual.  A great starting point in figuring out someone’s needs and what must happen for that person to be happy.
My problem has been that my social services assessed QOL and my opinion of my QOL do not match.  Although general indicators can help point procedures in the correct direction, every person is an individual and must ultimately be treated as such.

So, what makes me happy? (not in order of importance though family and friends do come first!)

·         Family

·         Friends

·         Watching films (bring on the Hanx challenge!)

·         Reading (my Goodreads challenge)

·         Cross stitching

·         Dillon and Lily (tortoises)

·         Making my own decisions

·         Having a choice

·         Watching The Walking Dead

Though some people might relate to some of the items on my list, this list is personal to me.  I also have to take into account my actual abilities.

I feel that my care plan should have the ultimate goal of helping me achieve a satisfactory, if not perfect, QOL (as well as the basic needs part obvs!).
I am quite lucky because even though it was stressful dealing with all the red tape and filling in stupid forms and at one point being completely stubborn, I was listened too and despite the changes in my routine I can now continue doing the things I want, when I want to (sort of)!!

I guess the moral of this story is there is only one person who knows how to make you happy.  That person is you.
Don’t ever be afraid to argue for the things that are important to you.

Friday, 6 January 2017

A Fair Chance at Tickets - Guest Blogging

Have my talents as a blogger finally been recognised?

No probably not because most of the time I just wing it and type out whatever's in my head. However, someone actually liked the way that I write and I wrote a special blog piece for them.

Check it out, I am a guest blogger for Attitude is Everything:

Attitude is Everything improves Deaf and disabled people’s access to live music by working in partnership with audiences, artists and the music industry.

Saturday, 31 December 2016

My Hanx Movie Challenge

Great thinkers since the dawn of time have been wondering what the meaning of life is; why are we here? What is our purpose?

I have long since come to terms with the fact that I don’t know the answers to these questions and indeed never will.  If I have the people I love in my life I need very little else (with the clear exception of food, water, shelter, carers, hoists, wheelchairs, electricity, medication etc. etc.!!)

I think that one of the issues that I struggle with the most is purpose, especially since my disability made me unable to continue working five years ago.
Life is gift and although the tree of life hit me repeatedly with the manky stick, I adamantly refuse to believe that my life is purposeless and that I cannot contribute positively to my families lives, my friends lives and to society.

I try to be a good family member (even if it’s just showing Mum the correct button on the remote for the billionth time).  I try to be a good friend (sometimes most of the time I talk too much, sorry Lucy, sorry James).  I try to contribute to society by doing voluntary work and promoting knowledge sharing and awareness online through my blog, Facebook, and Twitter.

However… (here’s the fun part!!) …

I REALLY enjoy setting myself challenge and tasks and aiming to successfully complete them.  They are challenges that probably seem pretty pointless to anyone other than myself but they give me a larger sense of connection and purpose.  Purpose is important.

My previous self-created challenges include:

1.       Learning how to ‘loom’ some complex designs even though my hand function is severely reduced – I loom in a slightly different manner and vastly slower than most but with good results.

2.       Everything I have stitched, designed, glued, weaved, needle-felted and hooked has been a challenge due to the degeneration of my condition. See some results here.

3.       The Goodreads book challenge (link).  This time I completed my challenge of reading 30 books in one year, only just though. (35 next year??).

Well the true purpose of this blog is to tell you about my new challenge to myself and it is an awesome one because it combines my love of movies, my OCD list making and my love for a fantastic actor.  Tom Hanks.
I recently saw ‘Sully’ and loved it.  Chesley Sullenberger is a true hero and only Tom Hanks can do justice to his life saving actions.

It got me thinking about how I feel I have grown up watching Tom Hanks on screen and have loved everything he does…Splash, Big, Joe versus the Volcano, Forrest Gump, The Burbs, The Da Vinci Code, Saving Private Ryan, Captain Phillips, Toy Story…

It wasn’t until I looked up his film list that I realised that I have almost literally grown up watching his movies as his film debut was 1980, the year of my birth.

 So, without further ado ladies and gentleman may I present to you, my own creation, my:


Challenge tasks:

1.       Create a list of all Hanx films. Only including those where he is credited as an actor (including tv movies – more challenging to get but aim high!!), not including production only or tv series’.

2.     Collect ALL the movies on the list on DVD, no time limit (may take a while!) All movies must be in DVD format and legally obtained (obvs!) and can be second hand (most will probably come from searching charity shops).

3.       When task 2 has been completed then have a major Hanxathon by spending days watching every movie in sequential order as per year released.

4.       Continue adding to the Hanx collection every time a new movie is released fitting task 1 criteria.

 My task 1 list:

He Knows You're Alone
Mazes and Monsters (TV Movie)
Robbie Wheeling
Allen Bauer
Batchelor Party
Rick Gassko
The Man with One Red Shoe
Lawrence Bourne III
The Money Pit
Walter Fielding
Nothing in Common
David Basner
Every time We Say Goodbye
Steven Gold
The Burbs
Ray Peterson
Turner and Hooch
Scott Turner
Joe Versus the Volcano
The Bonfire of the Vanities
Sherman McCoy
A League of their Own
Jimmy Dugan
Sleepless in Seattle
Sam Baldwin
Andrew Beckett
Forrest Gump
Forrest Gump
Vault of Horror I (TV Movie)
Apollo 13
Jim Lovall
Toy Story
That Thing You Do!
Mr White
Saving Private Ryan
Captain Miller
You've Got Mail
Joe Fox
Toy Story 2
The Green Mile
Paul Edgecomb
Cast Away
Chuck Nolan
Road to Perdition
Michael Sullivan
Catch Me If You Can
Carl Hanratty
The Ladykillers
Professor G. H. Dorr
The Terminal
Viktor Navorski
Elvis Has Left the Building
Mailbox Elvis
The Polar Express
The Da Vinci Code
Robert Langdon
Charlie Wilsons War
Charlie Wilson
The Great Buck Howard
Mr Gable
Angels and Demons
Robert Langdon
Toy Story 3
Larry Crowne
Larry Crowne
Extremely Loud and Incredibly Close
Thomas Schell
Cloud Atlas
Captain Phillips
Capt. Richard Phillips
Saving Mr Banks
Walt Disney
Bridge of Spies
James B. Donovan
Mr Macauley
A Hologram for the King
Sully: Miracle on the Hudson
Chesley 'Sully' Sullenberger
Robert Langdon
The Circle
Toy Story 4