Read All About It!

Yesterday I was lucky enough to have had a feature published in a local newspaper! A features writer, called Louise, messaged me via Twitter and asked if I would like a feature in the Essex Echo’s New Woman supplement about my blog, conditions and the new charity work I'm planning with Motivation.

Of course I jumped at the chance but then the asked if I would like to write my own feature Dream.come.true!

I’ve had letters in magazines published, poetry included in collection works books and I’ve been a part of school newsletters/papers since primary school but no one professional had ever asked me to write for them before and what made this sweeter was that they’d read the blog and still wanted me to submit a piece!

So yesterday there I was grinning back at myself from page 23, I friends and family bought the paper and sent so many messages of support and had requests for copies of the paper world wide – I felt the love!

If you’d like a read of the article and see it and the whole supplement in a PDF format click here but below is the article text. (Some of you will notice it is slightly different to the one printed – as expected newspapers have to trim and crimp!)

Yes, I’m disabled... but why are people always shocked to find I don’t lie at home moping

Suffering with chronic pain gives you a lot of time to think, when everyone else is at work or asleep and you’re suffering with a long term illness it can take over your life and you can become depressed – but only if you let it!

For the last 20 years I have been suffering from Complex Regional Pain Syndrome (CRPS). I have learned and developed many tried and tested forms of relaxation and distraction methods, from high doses of pain killers to evenings watching Love Actually with a tub of ice cream.

I am generally a positive person and for the last two years I’ve tried using my experience with CRPS, a chronic progressive disease, to write a blog. I wanted to create awareness of the condition and to challenge people’s perceptions of disability. People are often genuinely shocked that I have an active social life, have travelled at far as Australia and that I have a lovely boyfriend, Mike.

I won’t lie, CRPS along with having mild Cerebral Palsy has taken my life in a different direction to the one I’d planned but I’m always fighting disabled stereotypes. I left school at 14, written off by some teachers, but I still managed to pass my GCSE’s with B and C grades and went to college. I was told I couldn’t have an independent future but Mike and I saved up and we bought our own flat at 23. 

I may never have a full time job but I’ll do my best to volunteer and help others, including being Trustee of the Family and Relationship Centre http://www.familyandrelationshipcentre.com/ and Sycamore Young Carers. 

I have a life despite illness, not a life that revolves around one.

I get a lot of e-mails asking how to cope with pain and discrimination but the majority of messages ask how to date or find love, what to do when people stare, how to customise a wheelchair and how to do practical things like apply for disabled discounts and benefits.

One particular night I was online at 4am unable to sleep due to crippling spasms and nerve pain. I came across a statistic that said that 100 million people worldwide cannot afford wheelchairs. Here I was sulking because I couldn’t go out while there are people out there who never leave their homes or have to be carried around by loved ones, unable to lead independent lives.

Although I’m lucky enough to have a wheelchair and a mobility scooter I have gone through periods of illness where I’ve taken to my bed for months unable to leave the house. Although that may be only a glimpse into the lives of the people I’ll be raising money for I can completely empathise.

In this rare selfish moment I felt I should snap out of it and start using my own frustration and pain to do something worthwhile to help others whilst keeping myself going.

After some searching I found a charity called Motivation, an international charity that supports people with mobility effected disabilities, supplying them with customised wheelchairs adapted to their surroundings. This was the Motivation I needed.

I contacted the charity telling them about my blog and my idea to support them; I also pledged to my readers that throughout this particularly difficult phase in my illness I would be fundraising for wheelchairs.

I’ve had some wonderful support for the cause; friends, family and complete strangers sending in ideas, offering services and most importantly – money.

My family, friends and I can only do so much. I have a lot planned for the next few months but I’d love people to get in touch, get involved and help me to aid and support people, giving them a chance of freedom.

Please go to www.ladygogo84.blogspot.com or e-mail Lynsey_Ellard@hotmail.com

Hope you guys like the piece, let me know what you think!

L x

Motivation

As promised I’m finally here to announce that my chosen charity is Motivation – an international charity support people with mobility disabilities. They raise money to give people high quality but low costing wheelchair specifically designed for developing countries and their sometimes difficult surroundings and environment. I felt that not only was I moved by the stories and their work the fact that they’re called Motivation – kicked me up the butt!

With chronic pain it’s so easy to become insular and a selfish, forgetting that is always someone worse off that really needs your help!

Since I’m becoming housebound I plan to start small; specially designed seat cushions that relieve pressure (and helping prevent sores) are £15, spare wheels are £25 and a full wheelchair with motivation is £135, so I would like to start by raising enough money for 1 cushion, 1 set of wheels and 1 wheelchair = £175 to ease us in.

Who’s with me?

Now when I started to discuss raising money for wheelchairs (when I found out that up to 100 million people need one!) I asked you all for idea’s;

There were the simple classics sent in: bake sales, sponsored silences, swims, sports & fasting. Offers of; Pub quizzies, gigs, raffles, pamper parties, make overs, tea parties, body shop, Ann Summers, Pamper Chef and Vie parties have been very popular choices too! I cannot wait to be involved with all of the above and plan to do as many as we can possible fit in!

The more unusual suggestions were surprising; sponsored diets, both Mike and I have done them in the past, they completely motivational – your charitys money is held hostage by your scales – I’m only 3lb away from my goal weight but does anyone want to volunteer?

From where I sit – the idea being that if you are completely able bodied that you’ll be sponsored to spend a week in a wheelchair – going to work, socialising and living your daily life seeing what it’s like from where I (and millions of others) sit. I very interesting idea, as those who did these would be offered a guest post on Diary of Freedom – almost a social experiment.

It has been suggested that I compile a booklet/PDF of my favourite blog posts or write a completely new piece for this project. Would you guys pay to read my work?? It’s something I’ll have to think about!

For all the wonderful suggestions above there were some damn right odd and frankly disturbing; one anonymous reader suggested I walk for a day, now I thought it was a sarcastic message, but the tone of the message and reasoning “I would appreciate my wheelchair” makes me think they were deadly serious. If I could spend a day walking around I wouldn’t be writing this blog and I’d be travelling the globe walking miles and miles and miles writing about this wonderful world!

Another wrote in that after seeing Cherry Healey’s how to get a life documentary on prejudice and finding out that disability is a niche’ in the adult entertainment industry that I “could make a killing for yourself and the charity”. Surprisingly this is not the first time this has been suggested!

So, thoughts? What do you all think about these ideas? Tweet me here, Facebook me here, E-mail me here or leave a comment below!

L x

For more information on Motivation go here, Tweet them here or see their Facebook here

Two Years Together!

So after 114 posts (a complete fluke but I’ve managed to write 57 posts in both years!) and 17300 readers we’ve hit A Diary of Freedom’s 2 year Birthday! So many of you have been reading from the beginning, I’m writing from the same room, the same desk, the same PC but as you all know so much as happened in between! Thank you for all your e-mails, posts, retweets and Facebook shares – I appreciate the love and learn from the criticism. I will carry on waffling in my own “special” style and continue to support those who’ve needed my support and advice.

Also by chance today I picked on Bloggers.com, a network for blog writers worldwide, as the editors pick and therefore am featured on the website’s front page – gaining new readers but to have been picked from thousand’s is a real grin inducing accolade, if I could I would be doing a little dance!

Screen Shot - Bloggers.com featuring little old me!

My goal for year three is to reach 36,000 readers and to have written 200 blogs overall, as I said on this day a year ago “Where from here? Well, assuming you all keep reading, I’ll keep writing – as long as you and I are happy – let’s continue into the 3rd year!”

So the relapse from hell continues to reign over me. The RSD/CRPS pain is atrocious, my left foot has become paralysed but the rest of the leg and my right one are twisted in spasm or burning from an internal nerve fire! I walk like a drunken platypus and am spending more and more time indoors feet up or giving up completely for 3hr naps. The pain has been so intense I’m being sick and almost fainting but my wonderful family and friends continue to support and understand when I cancel plans or sit in silence - sometimes dribbling – attractive huh?

Luckily today you get two posts for the price of one, in the next one I have some news for you!

L x

Twitter Power

I’m waiting to hear back from my chosen charity regarding my fundraising mission, but wanted to write a bit about social media.

Trolling

This week saw a huge uproar when Olympic swimmer Tom Daley was a victim of some rather terrible trolling (internet bullying) and there has been a huge demand from the public to ban these people from Facebook and Twitter. Of course the media in general are having a field day publishing the pit falls of the social media society citing that if you’re going to put yourself out there as a celebrity then “get over it”.

Why should they just get over it? I’ve had some very nasty messages via my blog from anonymous idiots and I’m not famous; but on the flip side for every cruel and spiteful message I do receive I there are 20 positive and uplifting ones.

Support

As the RSD continues to take hold of my physical being, I am constantly supported by a cheerleading team of twitter/facebook friend’s with various chronic conditions – a wonderful side to the often criticised internet community.

In fact through twitter I met up with a fellow RSDer and Blog Writer Dominic . We met on Twitter and saw that we both lived close to the Southend town centre. I’d never met other RSD/CRPS sufferer in person so it was an experience to meet, compare notes on medication, ways to relax, alleviate pain and even a shared medical team – we’ve planned to meet again soon along with Mike and Doms lovely family – hooray for Twitter again!

Company Contact – Odeon Cinemas

Another social media upside is being able to be in contact with your favourite companies and service providers who now dedicate whole teams to chat, comment and link with their customers on an instant basis!

I Tweeted Odeon Cinemas this week.

I’m an avid cinema goer, I have been known to  not only visit up to 4 times in one week but to come out of one film go straight back to the booking counter to see another film minutes later.

Although I’ve always had great service from the Southend Odeon staff and the Odeon website I was always confused that you could only book two friends alongside a wheelchair space. Although probably just a glitch that hadn’t been pointed out before a small part of me felt that it was a cheek as though I only visited with a carer or two not a bunch of friends and family.

This week I went with my sister and our two nieces to see Ice Age 4 (Fun but you can’t being the first two films!!) and went to book the family deal of two adults and two children in the disabled section which of course we couldn’t do because of the two person rule.

I thought it must have been just a website thing but when he got to the cinema our seller Michael (Friendly, helpful and funny – Note to Southend Odeon) had the same issue having to book three of us then a separate child booking loosing us the family discount. So I took to Twitter.

I’ve just had replies from their online team saying it was just a glitch that you can now book the family deal in the disabled section and they’re working on being able to book more people together when there is a disabled member of the party – brilliant and quick work on Odeon Cinema’s part and a small Kudos to myself!

L x