Cloudy with a chance of pain 

I’m lying in bed writing this post, it’s been a difficult few weeks managing my pain. 

As a wheelchair user, I am always in some level of pain or discomfort, none of us know exactly what causes it, but my guess is it’s something to do with being sat still for long periods in the same position. 

I have been very lucky in my life to have the kind of disability that doesn’t require too much medication, the stuff I do take is to make me feel more comfortable rather than a necessity to keep me alive. Never the less it’s not the most joyful of experiences.

I don’t like to witter on and complain about aches, nobody wants to be friends with a moaner and besides I hate having people pity me, but I became aware that my daily gripes behind close doors where more than just a morning grumble instead, they where making me miserable and sad 

That will never do. So I recently visited the Doctor.  

I’m so lucky to have s great doctor who is sympathetic to my needs, we can discuss things and he’s very happy for my suggestions as to what could work. 

He’s also giving me a full check up, as I wheeled into the surgery and he enquirers as to my ailments I simply said  ‘I feel like I’m falling apart’.

After a few questions we came to the conclusion that the pain is worse at night as my body relaxes from an upright position as it, dies spazams occur leaving me in pain and not being able to sleep. We sorted out some meds and I’m pleased to say so far so good, I took the new medication last night, and as a result had the best nights sleep in months, and my pain has lowered. Early days yet but it looks positive. 

I’ve also signed up to give my body to medical science for 6 months today, keeping a check on pain diary and mood, as some science guys and girls believe that weather can alter people’s pain levels. 

I’ve decided to look after myself and my wellbeing far more this year. I’m far too young to feel like a 88 year old lady

There’s far too much being fabulous to do yet! 

Dating Disaster 

So I’ve been debating wether or not to talk about this for a while. Up until now, I’ve struggled to talk about it without sinking into a pit of despair and humiliation. But here we are, with me staring at this page feeling like I should share this with you, dear reader. 

It all started back in November, in a quest for love, more than 18 months previous I’d signed up to an online dating site. Got the most part, I infrequently checked the app to see if I had any messages. I never ever did, so last November I decided to delete my account and give up on love. 

As I went to part company, I noticed that I had received a message at long last! The message said ‘you sound so full of life, (I’d made an effort with my profile, after countless rewrites) and you  have eyes I could drown in.’

I thought he was trying to he nice, and we’ll at least it was more than a one word ‘hii’ so I replied. Genuinely thinking he’s lose interest in me once he found out about the wheelchair. He didn’t, and as the days turned into weeks we found ourselves enjoying the messages. So much so, he asked me on a date. I was retesant at first, onlu because I’d never been on a date before. But after repeatedly asking me, and reassuring me everything would be great. I said yes.

The first date went brilliantly, he turned up, we had stuff in common and conversation flowed. So much so he wanted to see me again. 

He didn’t know when though, he was a teacher and with the end of term fast approaching, he’d be busy on the lead up to Christmas. 

I’m not one to get excited about things to hastily. I hadn’t told many of my friends I was dating until I was sure what was happening, the constant ‘good morning’  messages were so nice to wake up to. He’d tell me I was beautiful and how he couldn’t wait to see me.

He even surprised me at the German Market with my friends, kissing me and holding my hand without bothering if anyone saw, it made a nice change from fellas who were scared of telling me how they really felt because I’m in a wheelchair. 

He made an effort with my friends, wad nothing but gentlemanly and even my friends were impressed. For once I was happy, if was what the first flush of love felt like. Sign me up for the whole lot. 

Slowly but surely, my non existent confidence grew and I started to feel worthy this genuine guy really did like me 

Or so I thought.. 

It was a Friday night. I hadn’t heard from my date all day, which was unusual, I’d get at least a ‘morning’ text.. But today I hadn’t. I’d spoken to my friend who’d talked me down from a panic and fallen asleep sure that in the morning, he’d be in touch.

I woke up at 4am, knowing something wasn’t right, I had a compelling urge to Google his name. I don’t know why, but that’s exactly what I did. 

I typed his name and the School he worked at as a history teacher in the box..  ‘The school are currently looking for a history teacher’ said the website. My stomach learched.

I then typed his name and where he lived. Up popped a result from the local paper, an article appealing for people to help him find the engagement ring he gave to his fiance. 

‘Andy’ wasn’t on Facebook, but his fiance was. So in complete disbelief I sent her a message telling her everything. To my surprise she didn’t seem all that shocked, telling me I should  ‘Talk to him’ with confirmation it was indeed the Man if been seeing. 

I texted him.

Long story short. He lied. About everything, apparently he had his reasons, although, when I asked what they were he didn’t tell me.

I was devastated. Still am, just like that he was gone, destroying what little confidence I had. So damaged, I don’t know if I’ll ever get it back.

I can’t trust many guys anymore and I really don’t know how I’m ever going to find anyone who will fancy me again.

I’ve deleted the online dating site and I don’t intend to return.. But as someone who is never looked at twice when dating in the conventional way, how do I find my Mr Right? If I’m honest, I’ve never felt more alone. 
Ask Me how I am, I tell you that I’m fine, I have great friends and a loving family, but now I know what I missing.. And it’s something that can make you feel amazing. It’s killing me more than before.

Maybe I’m never meant to find love. 

I hope Andy is happy with his wife. He’ll never really understand the extent of the damage he’s caused.

This will be my year.

Twenty fifteen is giving it’s final curtain call, and twenty sixteen is waiting in the wings. 

As we await the deluge of ‘New year, new me’ social media posts. I have to admit I’m dreading the start of a new year, purely for the fact that I hate standing in the brink of the unknown.

I will I grumble at the prospect of a new year being a disappointing prospect. 

I am incredibly lucky. There are many of my loved ones and dear friends who would love to be where I am. On the brink of the unknown. I miss them tremendously.

I don’t believe in New Year’s resolutions, they are designed to fail. Instead I will open myself up to new adventures, experiences, without hope or agenda that by doing so will make me a better person, all the time being the same as I have been for the last twelve months, and the twelve before that. 

It’s experiences that make a life – I’d be lying if I told you there’s nothing I want to change about mine, but why people feel the need to set targets for these changes at the beginning of every year baffles me. no amount of wishing will work either.

Doing it this way, being kind and calm about life will make me happy and if you are happy and positive. Things will, eventually be alright.. 

No amount of complaints about the past will change your future. Learn from everything you do and call it wisdom.

Fit wheeled wonder woman 

It’s the beginning of October and we are a few months away from Christmas. I’m sick of being fat and  tomorrow is the eve of my diet.

Over the last few months my health, I feel has deteriorated. I am out of breath after short transfers, and my self confidence is at an all time low.

It’s very difficult for disabled people, like me to be active and burn calories. My limited mobility means that I can  struggle to move and effectively loose wait.I don’t want to be a superhuman paralympic hero and neither do I  want to succumb to enrolling with armchair athletes with an average age of 76.

The problem for me is a deadly mix, I love food, my Mum is the world’s most amazing cook. Friends joke that they are only still friends because my Mum makes the most delicious food. Cooking is one of the ways my mum expresses love and with that big heart comes big portions. 

Then there other fact that despite the media wanting you to believe that all disabled people are aiming to be Sporty McSportison. I sadly am not. The look on people’s faces when they discover this is a kin to fat shaming.

I’ve always had issues with my body confidence. It doesn’t matter how many times I’m told, I will never really believe that I’m pretty, alluring or desirable. If somebody pays me a compliment, I will just say nothing. It’s hard to live your body when it fails your agile mind every day.

I will do nothing more than respect my body, I admire it purely on the basis that it has survived scrutiny and doubt from all angles and stood firm when people say it’s useless. But loving it, that’s entirely different. Not only does it not work, it’s disgustingly blobula.

Skype why am I telling you this? I have been historically bad at healthy eating in the past, with no will power, I get deprived, grouchy and horrible. So, I’m trying a different tact and writing a blog about my health kick.

I want to loose two stone. I don’t know how much I weigh currently. It’s difficult to tell when you can’t stand on scales, but with the support of my Family and Friends I hope to get thier and i want to share the ride with you.

It won’t be easy, I probably will sulk but I think writing about it might help to keep me stay focused and more determined than ever to become healthy.

No ever disabled person is a paralympic hopeful… 

But if they can be healthy so can I

This. Girl. Can

And it’s Starting from now.

Curoiusity kills your confidence 

It’s very odd thing to be disabled, I had to learn at an early age to deal with people staring at me. when I was growing up, I’d sometimes ask my Mum why people were looking at me, because you’re beautiful, She’d say, I knew that wasn’t the case. I knew deep down people looked because I’m different, many people with hidden disabilities tell of how misunderstood they are,  I often hear of people’s who disability is not as noticeable as mine telling of how difficult it is to be understood by society, and I’m not for. One moment going to sit hear and tell you how much harder my life is to that of someone with a hidden barrier, because the reality is, if you are different these seems to be short hand to say we are public property.

Once your different and in my case, disabled we wave the right it seems to privacy, wether it be because the nessecity of personal care or an ill thought through question, driven by curiosity. I will awnser almost any question – peticularly if it’s a friend asking a guenuine question. I don’t mind and I often say I’m an open book and I’ve heard every stupid question in the book. 

The majority of the stupidest things I’ve ever been asked are meant with no malaice. It is often the fact that people feel nervous about duscussing my disability with me and people are embarrassed to be asking such questions.  In these circumstances I often find my self using humour to form a human connection with someone, by doing this it means we can both get past the elephant in the room. 

You can tell the difference between someone who is curious, and someone who is frankly a cunt. 

I have never really experienced major bouts of Disablism, thankfully I’ve never been phsically abused because of my condition (touch wood..) but I have had experiences of verbal abuse from complete strangers. People who think nothing of telling me God has forgiven my sins, and that despite everything, he had forgiven me, and he is waiting for me.

Or those who will openly tell me I should have been killed at birth because I’m useless. The most reason on that angered me to the point of tears, was a man, a very fit man infact who at first seemed nice, suddenly turned when he asked me exactly how I became disabled, when I said I was born like it, he, with out missing a beat, asked if I had sued, when I tried to move on, without responding to his very prying question he pushed for a awnser, I eventually said no… And he told me I was dumb bitch who deserved every hardship I face. Nice guy.

Then there’s the people who think there doing me a favour, coming invading my personal space cuddling me, let me tell you, it’s never the handsome fellas that do that, usually I get lumbered with smelly alcholic tramps trying to smooch me.. These overfamiliar types will also think nothing of push my chair without telling me who the hell they are, or where they’re taking me, often pulling a wheelie and shouting something moronic like, get out of that cair and dance with me.

These are of course, not very serious hate crimes and all barr one, of the experiences I’ve had have has ever made me feel like I need police. The one occasion it did, and the police got involved nothing major happened a half an hour chat to tell him not to do it again, and that was it. If I’d have been of a different race though, I know it would have been a different story.

Some disabled people aren’t as vocal about thier experiences as me, and too be honest, it’s never a pleasant experience to talk about the horrible end of my condition, talking about the experiences of predujeces I’ve endured gives the people who are responsible undesevered time in my memory. Talking about them exposes a weakness in me, the fact that secretly each one of the ill thought through comments chips away at my self confidence. I hide it well because I don’t show weakness outside of my circle of friends and family. 

Being disabled waves the right anonymity. Wether it be people wanting to call you an inspiration, or someone wanting to tell you that even though they don’t know you, they hate you with a passion, someone will tell you, because they believe it’s there right.

Like an unwilling celebrity 

Happy Radio 

What’s your favourite piece of music you listen to when you feel sad, fed up or poorly? Queen? Quo? Or Alfie Boe? What ever it is, I am a great believer that music can make you feel better, I don’t know what it is but I think it should certainly be prescribed on the NHS.

I have been involved with my local Hospital Radio Station for around 5 years, I joined in a mad panic over the state of my life after university, in a bid to try and make it is a presenter, I joined up thinking it would be a ticket to stardom, playing good music and playing about on the radio was an ace way to start. If I stuck at it for a few months at least I’d be able to put the experience on my cv at least, there was a theory behind madness.  I never expected what followed.

What followed was infact a compleate love for entertaining people who are at the lowest ebb, and feeling very poorly indeed, being the people that are the ones who are interested in talking to the patients about something other than thier health and medications, but something that they are actually interested in, like music can make patients smile, and telling them to tune in to the show later that evening to hear the request can give them something to look forward to when the loved ones and visitors have gone home, leaving you with the grapes and a well thumbed copy of Bella.

I didn’t realise just how rewarding the whole thing will be, I never really realised just how many friends I’d make either, make no mistake Hospital Radio is not glamorous and it sure as hell doesn’t pay well, but having a team around you withal shared enthusiasm makes it all worth it. We aren’t just volunteers, we are a family.

Pheonix Hospital Radio is funded purely by donations, we couldn’t do what we do without the fundraising efforts of the team. We are currently looking to raise enough money for a new porta cabin and equipment that will service as a new studio, as the one we have is crumbling around our ears. 

Two of my radio buddies are currently in the mist of a 60 hour Marathon radio show from 10am on Friday 17th to 10pm on Sunday 19th July, which is something incredible. And I couldn’t be prouder of the work that Hospital Radio do this weekend.

I donate to may Just Giving Pages, and never usually ask much in return, well this is about to change. Right now. If you would like to listen to two men, slowly go insane all in the name of charity please visit http://www.phoenixhospitalradio.com and if you are feeling generous, please give what you can.. I know it maybe small to you, but to me it’s a very special station…

You never know when you might need us…

Thank you. 

I’m gonna make a change..

It can often be very difficult to muster positivity, peticularly in these modern times, you can get bogged down in issues that can seem massively world changing, clouding the view of the world we live in. That tricky time at work, the lack of romance in my life, or the apparent battles that others seem to put up obstructing my view of the goals I’m aiming for, can often be the things that tip me over into the abyss of gloom filled thoughts. Especially when my life is at times an already difficult path.

I always try and remain outwardly positive to others who don’t know me as well as some, from an early age my motto has always been ‘nobody wants to be friends with a miserable bitch’ and with my disability meaning that even in this day and age, some people are wary of becoming friends with Disabled People for sheer fear of offending us, it is important to me, that I try and maintain a constant smiling, friendly face and a attitude that makes people relaxed and comfortable in my company.

I am only human though, and sometimes even with the best intentions, I am unable to simply keep smiling and cheerful. I have realised though that the world is a much better place when people are happy, or at least that’s how it is for me. Giving me a purpose and being able to do things for other people is what makes me happier more than anything in this world. 

My limitations mean that I might not be great at helping you build that ikea flat pack wardrobe, I can’t drive to you at 3am to pick you up when you and your lover have had a row, Infact anything remotely practical, you can count me out, and it kills me that this is the case,but what I can do though is talk to you about the latest falling out with your beau, I can agree with you and make you feel better that, yes, they are a compleate wanker, and that you were too good for them anyway.

I can make you laugh. I’d do anything to hear you laugh. The sound of other people laughing and looking slightly happier than they were before they started telling me what was wrong is the thing I get addicted to, to put it simply. I like to make a difference in the world, even in a small, and in the grand scheme of things, insignificant way.

I love to see solidarity with others from others. It makes me smile when I see people, compleate strangers Infact come out in force to support one another in times of extreme difficulty. 

When the 7/7 bombings happened 10 years ago, at the time I didn’t really remember much about the attacks, what I remember is July 8th, when Londoners didn’t stay at home freighted to leave their homes instead they helped one another, carried on despite everything. I saw it happen again when the riots were spreading, and people we’re loosing faith in humanity, the day after we saw communities rally round in force to initiate the self styled clean up operations.

My point is this, no matter what happens in this world the majority of people who inhabit this planet are deep down inside, empathetic caring people, sometimes we get too bogged down in drudgery to see it sometimes, and I know from experience, as someone who relies on the help of others far more than most, most people aren’t as mean spirited as they have us believe. Not in my experience at least, yes the world can sometimes seem dire, and I despair at the news sometimes, we all know it’s not a perfect existence.

So this is why I have decided to try a little harder at being the one to spread a little bit of happiness to others, and also become very irritating too, no doubt , but, I know far more about this life being short than most people my age, I want to try helping out others where I can, in the best way I can, because Kindness is Magic, and in the grand scheme of things I am a very lucky human, things aren’t perfect,  but then again, who’s life is?

Be kind to each other, laugh everyday, and don’t let others rain on your parade. All horrid crap to spout. But all good rules to base an attitude on never the less. I do,not expect any gain from it but I believe in karma and whatever I’m able to do to positively effect others will surely give me positive effects to reap?

Do something amazing with me lets be the positive charge in an increasingly grumpy world.

I’m gonna make a change.