A Perfect Day

Here is an example of how having a disability has a huge effect on every aspect of my life, but with planning, stress, worry, determination, stubbornness and a whole lot of willpower, even I can meet an A-list celebrity!

When I invented my Hanx challenge at the beginning of this year, I gave very little thought to about how it would end.  I guess my assumption was that I would collect all the films on the list and then have my Hanxathon and that would be that.  Mission complete.

However, fate had other ideas.

I finished the film collection mid-August and although I have yet to do my Hanxathon, it was around this time that I received an email from Waterstones that would give me the perfect ending.

You know that time when you log into your emails and all the new messages load and 99% of them are junk emails where you scan the subject line and just click the bin icon without reading the actual email??  Well, sorry Waterstones but the majority (not all!) of your emails end up in my trash folder after just the tiniest glance along with other mail deemed pointless such as the ones that try to get you to spend more money (‘get £5 free for being such a loyal customer just spend £5000 to claim it’).

Except having been hunting for Tom Hanks films for the previous 6 months, when his name appeared on a Waterstones email it definitely warranted a read.  To my surprise Mr Hanks was releasing a book of short stories called ‘Common Type’.  Even better, he would be in Waterstones, Piccadilly, London to sign copies and you could meet him, if you were lucky enough to be able to get a ticket.

Nobody could stop me trying.

I emailed the Waterstones event team – ‘Hi, I am going to try and get tickets for me and my carer to attend the Tom Hanks event but I use a rather large powerchair, can you confirm whether this particular branch is accessible for me please’

Reply – ‘We expect this event to be in high demand, so we will discuss access if you manage to get a ticket.’

…and the award for the MOST UNHELPFUL REPLY TO AN ACCESS QUERY goes to…

Tickets went on sale at 10am on a Friday and to my complete horror at 10.01am they were listed as sold out.  By stubbornly, refreshing my screen again and again and again, I got one HOORAY!!

But oh no…tickets sales are limited to one per person and you are not even allowed to queue up if you don’t have a ticket, what about my carer? There is no way I could cope alone.  Not expecting a helpful reply, emailed the events team and explained my issue.  To my surprise the reply was good! ‘Of course we will not split you up from your carer at any point’ …well I shall take a printed copy of that email…you know…just in case!!

So, who shall I beg to be my carer that day?  While the Local Authority and the NHS argue over who is going to fund my care, I shall have to rely on the benevolence of a friend or family member to help me.

Who can assist me with train travel?  Who kind of knows the way in London? Who might have ideas what to do if my chair broke in London?  Who has helped me collect Tom Hanks films and will appreciate the awesomeness of this once in a lifetime chance?  Only one answer really. My brother-in-law Angus.

Okay so:

·         Ticket – tick

·         Carer – tick

·         Will powerchair battery last all day in London? – new batteries fitted earlier this year so, tick

·         Does the weird grinding noise that sometimes erupts from my front right castor mean that my wheel is going to fall off in the middle of a busy London street? – probably but let’s live dangerously so, tick

·         Do I need new tyres as mine are bald? – I can’t afford new ones yet so they will have to do so, tick

·         Radar toilet key (a disabled persons essential, thank you Angelina) – tick

·         Heavy duty pad in case of catheter malfunction – tick

·         Train tickets – tick

·         Train ramp assistance booked – tick

·         Agency home calls sorted for the day – tick

To my absolute surprise my day worked out perfectly and my obsessive planning paid off!  Of course, a lot of my gratitude goes to Angus who also booked us in to eat at the Bubba Gump restaurant, where we ate shrimp (what else?).  The staff at Waterstones who, on the day, were fantastic, incredibly organised, friendly and polite and of course Mr Tom Hanks himself who laughed, smiled, shook my hand and signed my book!

The perfect day.

 

 

Hanx Challenge Blog00

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:

ME.

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.

About Tuppy Owens

The Outsiders Club Website

SHADA Website

TLC Trust Website

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 emma@dysphagiamatters.com for more information if you are interested in being a guest blogger.

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.

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:

Guest blog

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