Sunday 27 December 2015

THAT IN-BETWEEN STUFF

Christmas means different things to different people. To most it's supposed to be a time with family, to have fun, over eat and be jolly. What about the people it effects differently? The lonely, the people dealing with mental health issues and depression and the homeless.

Loneliness and depression effect different people in different ways. Having recently been diagnosed with depression this month and being put on anti depressants it is not something I would wish on anyone. Things just got on top of me and found it really difficult to cope. Between my health getting worse, issues with my heart, cancer scare and dealing with my dads dementia diagnosis's it all become too much and I ended taking time off university. It can be a very debilitating thing to experience. Feeling disjointed, empty, everything looks grey and muted.

The anti depressants that I have been put on for the last month are duloxetine. The main problem I am having with them is the drowsiness during the day and the limb pain. A night time is horrific. The phantom limb pain feels like a cross between pins and needles /numbness and electrical firing with small shards of glass digging into my legs. This feeling goes up from the end of my stump all the way to just below my knee.
Due to this, since starting the anti depressants I have yet to have a good full nights sleep which is draining to say the least.

I also hate to admit that I have to acknowledge how much the pain killers actually do help after running out of them this festive period. I suppose like most people I thought that I would be better off with out the pain killers, that they would be easy to give up if I wanted to because, hey what good did they do anyway? They didn't take the pain away, in fact taking smarties would have more use..so I thought. Like I said it wasn't until I went with out them all together for the last 4 days that I actually found out just how much of the pain they did dull. They might not take all of it away but they sure as hell tone it down. I felt like a junkie gagging for a fix when David came back with the prescription from the chemist.
On top of the phantom limb pain there was the bone pain, knees, elbows, back, hips and wrists with the arthritis not to mention the swelling and pain in all the joints such as fingers, neck etc, nerves, skin itching and sensitivity of the skin which is due to the Fibromyalgia...Yea fun festive season. However this didn't stop me from enjoying this Christmas, although it feels like it went really quickly. I was even brave and ventured into the town (which is unknown to me during the month of December full stop). This did not help the stress as on top of it being busy, the festive spirit in people seemed to be non existant. If you only got as tall as their waists as you where more seen as being in the way and I swear if I had to hear one more person tut behind me or loudly complain that I was in the way and they couldn't get where they wanted to be instantly, I would have went on a rolling rampage ! You would think if they had mouths big enough to complain very loudly to their shopping companions, they could open them to say "excuse me".
However in the New Year am at the chronic pain clinic and the cardiologist so lets see how that goes.

Despite all of this I have tried to stay positive and it helped that we where awarded a grant from Starbucks redcupcheer campaign. I know it sounds sad but I was so excited to find out The Psych Twins had won the money, I was bubbling with excitement.  We managed to speak to Sun FM who agreed to deliver some bags of shopping to a food bank for us on Christmas Eve. So the poor long suffering husband had to do the shop at Asda  and get the bags down to the radio station. We have also been able to help Age UK in Sunderland by putting hampers together for the New Year for them and Centre Point in Sunderland who support 16-21 year olds who are homeless, who we are going to buy things for again in the New Year.

So as life ebbs and flows around us so my life has it's usual ups and downs, and this festive period as been a variety bag of plus and minuses. The downside being the pain and depression but the up side being the good deeds we are going to be able to do for people and the help we can give through The Psych Twins. Michael and Georgia have been up for the week which was another huge plus and there are lots of things on the horizon for both The Amputee Diaries and The Psych Twins in 2016 but also more medical issues.

Stay strong and be true to yourselves and I wish all my readers a happy and safe New Year and look forward to blogging for you all in 2016 what ever it may bring my way I will make sure you are the first to know.

Monday 23 November 2015

COMICS, HERO'S AND VILLAIN'S AND NO AM NOT TALKING ABOUT THE GOVERNMENT

Its been a very busy weekend for The Amputee diaries, I along with DC Photography (my husband) and my daughter, we hit Film and Comic Con Newcastle this weekend.

Again we where lucky enough to be able to attend one of Showmasters celebration of all things film and geek. Lots of fun was had and we both entered the spirit of the occasion by Cos-playing for the two days. For anyone that is not aware what happens or what a Film and Comic Convention is all about or what Cos-playing is read on.


Cos-Playing put simply is when you dress up as your favorite character from a film, TV show, comic or game and these conventions are all about celebrating all things geeky and that is wonderful about these things we are passionate about. Now don't get me wrong some people take this very seriously indeed. Hours, days sometimes even months go in to making very detailed props and costumes that are screen accurate (not to mention money). Others do their interpretation of the character they have chosen to be, there is no right or wrong in this world where everyone is accepted and everyone is equal. Complete strangers are willing to pose for photos with you or on their own, where you get asked to pose for other people, where people are interested in how long it took you to make your head piece or instantly recognize who you are dressed as, family's can attend to have fun, little ones can dress up and pose with their favorite characters from film and comics, stuff that ordinary shops don't sell can be bought and for a fee you can get a photograph or autograph from a famous celebrity out of your favorite film or TV show, or your favorite author or artist from the comic world.

These events are great for meeting and making new friends, having a day out with the little ones or just collecting memorabilia and autographs. What ever your thing you will find it here. There is no judgement, there is gender bend costumes, home made costumes and professional Cos Players rubbing shoulders with non cos Players and stars of the big and little screen.  However it was sad to see that not many disabled people or wheelchair users at these events. There is help there, just well hidden which is where I come in. This weekend I only saw one other person in a wheelchair Cos Playing.

There is a darker side to the Conventions and believe it or not, regardless of how accepting they are bullying can sometimes still be an issue. Speaking to a lot of Cos Players over the weekend, most get involved for the same reasons I
do, its freeing. A couple of hours not worrying about your disability, life, anxiety, depression, stress,
being accepted for who you are with like minded people.A lot talked about how they where bullied at school for various reasons and attending the conventions, Cos Playing has helped with that. Its helped them to see that there is nothing wrong with them it was the people who bullied them that had the problem. This is why it is so sad to see it happening between Cos Players, especially in an environment where you should feel safe.  Its sad to say that some of the  Cos Players (mainly at the bigger cons), do suffer from bullying, why? because their costumes aren't screen accurate, because they are showing  too much flesh or because some one thinks they are the wrong shape or size to play a certain character, this can put some people off from Cos Playing for the first time as they may already be anxious or stop some one from doing it again, words hurt, but this will be something I will cover in a different blog when doing another review for a  convention.

So if this event is so great to be why haven't I heard of it? I hear you scream (or you should be screaming). These kinds of things do not seem to be advertised main stream so unless you know some one who attends them or you are into the Marvel world, DC fanatic or Star wars Fan you may have missed the opportunity to attend one till now. My first convention was back in March 2015 at Newcastle at a Showmasters event. I was hooked. I had heard of the conventions the most famous one being the San Diego one in the US (if anyone would like to donate a ticket or press pass for that one it would be appreciated) but had never thought to go to one, why? because I was disabled and in a wheelchair.

I am always aware that not all places are accessible and like most people who have a disability I panic and therefore try to plan in advance for every eventuality even down to the smallest detail. Will there be an accessible entrance? where is it? will there be lifts? can I get round the stalls?  where are the toilets? will they be big enough to get in with my wheelchair? what happens if I want a photo with the celeb? the list is endless. Now I think I know what you might be thinking here - But aren't all venues accessible now due to the disability act? No funny enough they are not. This could be due to the age of the building, it being listed or just bad design etc. I once went to book a hotel in London who claimed to be accessible but had steps up to the front entrance, their answer was some one could come out and carry me up the steps ????? You also have to think about the people who organize these events. Disabled accessible might mean the doors are wide and there is a wide disabled toilet and  lift. They don't think about other things like, getting up to the front entrance, is the toilet wide enough to get a wheelchair in and another person if a carer is needed? how easy is it to get to the lift? are the aisles wide enough, getting around equipment and most importantly (to me anyway), do the staff know how to deal with this? Now a lot of disabled people don't mind asking for help or even accepting help but there are some who don't want to ask some one else for help or accept it  when help is offered or who want to be as independent as possible when out and about and this is what event organizers need to be aware of as well as their staff and volunteers.




So off I went to my third comic con that Showmasters have organised. The one in March I found very confusing, was un aware of what help was available and don't even mention trying to get around the stalls to look ! The second one was up in Glasgow which I thought the venue was excellent, downside however was the lack of information from staff and the lack of staff to be honest.
The venue in Newcastle is the Metro Arena  very good and very accessible, The parking is £5 per day for the full day unless you have blue badges then it is free. However the disabled parking spaces are limited. Access into the venue is good and there are plenty of staff on hand to open doors and help you in. Every thing for the convention is on the level and showmasters got everything right this time. There was enough space to get around the food stands, accessing the prop shoots was easy enough, with enough room to maneuver around the area. Although I didn't have any photos with stars taken this time and it will always be like a conveyor belt, access and staff helpfulness though was excellent. Whilst David was having a photo shoot with Colin Baker they took me down  to wait at the other side for him collecting his picture with out any fuss or awkwardness.
This year they had added changing rooms for male and female cos players which where situated upstairs but where accessible to everyone via a lift if needed. The registration desk was accessible and the staff helpful and informative. I learnt that they have an email address to contact should you need extra help ( I will put it at the end of the blog), carers can go free with no restrictions on buying photo ops or autographs or taking part in any talks, Some evidence my be required such as DLA letter, Carers letter or a photo copy of you blue badge. You will also be given a slip of paper which you  can then show to the pit bosses, who wear red. This will get you help and access to  all photo shoots as quickly as possible, enter any autograph queue without needing a virtual ticket. This was a brilliant idea, shame no one informed us of this at Glasgow. Also found out that should you have a child or adult with ASD or ADHD that needs a quiet place to calm down then they will be able to sort that out as well.
There are disabled toilets on either side on the ground floor that are accessible with the use of a radar key. There are staff on hand that have the key. On one side the person was next to the disabled toilet but on the other side there was no one around and my daughter had to walk to the bottom of the corridor to the nearest person in a yellow coat to ask who had the key. Luckily it was her but had it been some one else that could have been a huge problem, especially for some one on their own or who could not be left unattended or who had any kinds of control issues. My advice bring your own key as I believe radar keys are all the same but check. The other downside was where to get the key from was not made obvious.
Nothing was said at the front desk and there where no notices on the door of the toilet
or wall. The person I spoke to showsec?? Refused to answer any questions on disability training etc as they had been told not to give any interviews, very strange.

The lay out of the room was much better this time, The big blue boards that they had at the end of each aisle had gone and for some reason the aisles looked more spaced out. That could have been down to this event being quieter then the one at Glasgow and in March at Newcastle, but the difference was amazing ! easy to get around, get to the traders and plenty of staff on hand to help out. Bravo Showmasters you might have cracked this  venue. However I would be very interested to see how they work at other venues like  London, Brighton or Manchester. I mean do they follow the same training and format for all staff? if so at the registration in Glasgow why wasn't I told about the extra help? How come in March nothing was signposted for disabled use? These are things that still need to be worked on in my opinion.

I also would love to go to other organizers events to compare who they deal with disability issues etc so watch this space as we will try to get answers there as well. Having looked at MCM, Hero Conventions and Rogue Events there is not a lot of information, Showmasters have the email address to contact if there is an accessibility or health concern. Rogue have a contact email to register a carer to go for free or they charge a large fee to have a pa available to you should you be on your own, However unlike show masters the carer is not allowed to purchase photo ops or autographs unless they have bought a full price ticket, bit harsh if you ask me. MCM and Hero convention there is no mention of disabled access, families or carers and under contact there is a general inquiry email address. Of course there is also comparing it to how the USA deal with their comic cons and disability issues, carers or families with special needs, so again something I would love to  take a look at.

To be honest I think these conventions and businesses should take things like this more seriously. At the end of the day who knows how much business you could be missing out on? Employers should be thinking about this as well because as we are well aware the government are determined to cut benefits and are deeming all and sundry fit for work, if so is your company disabled friendly? are your staff trained on how to talk to some one about mental health or how to approach offering help to some one in a wheelchair? I don't think they are. Every where I go it is disturbing to see just how many businesseswrite off the disabled customer /user. Think about it .

You can see more images from the Film and Comic Con Newcastle by going to thepsychtwins.bravesites.com or http://dcphotographysunderland.photofolio.org/

For more information on Showmasters go to http://www.showmastersevents.com/

To contact Showmasters for extra help conatact Samatha at extrahelp@showmastersevents.com

Tuesday 17 November 2015

THE TRUTH AND NOTHING BUT THE WHOLE TRUTH

The thing I hear the most often is how am an inspiration. That's good, am glad. To have some one to see you as the reason that they get up in the morning, or push themselves that little bit harder or further, to know that when they think they are at the edge of their limits and can not take anymore or no longer fight, to know that because of you and what you can do helps them to keep going that little bit longer, to fight that little bit harder.
What I don't understand are the number of disabled people out there that don't like being told their an inspiration to some one. They feel that in some way it belittles them and their disability and what they live with. Why? If because of the fight and struggles that I have to go through to do what I do, not just live day to day but go above and beyond my limitations, that makes just one person stop and say " I can do this, if she can ." or " maybe my life isn't so hard" and it puts things in to context for them before they spiral out of control down the rabbit hole, why wouldn't you want to help?
As unpopular as this might make me, some people with disabilities are too hung up on their disability, they let it define them, control them and they have deeper issues to deal with themselves, such as coming to terms with what has happened to them. Yes life is unfair, yes its terrible that it is you who ended up the way you did and you never got to do this or you got cut off in your prime or you feel some how that you have had your life that should have been snatched away. That is no reason to make other people squirm, feel uncomfortable or worry what they say to you, is it?

There is another thing. What is with this whole "don't use this term" or " don't label me as this". I have news for you, the only one discriminating with the language or labeling is you. If you did't make a big song and dance of it people wouldn't think about it. Now people tread on eggshells whenever they see some one with a disability or in a wheelchair terrified of speaking to them or helping them or even holding a bloody door open for them just in-case they offend that person or get their heads ripped off. Trust me I was born with Congenital Bilateral Talipes, at a time when children with any form of disability physical or mental was put in a home or special school.
My mam fought the system for me to attend a main stream school. I grew up In an age when there was no rights for disabled people, no adaptations nothing. You would walk down the street and have people look at you in disgust and  cross over, spit at you, and am talking about grown adults not kids...this is what I grew up with  from the age of 8 / 9 years old.  Name calling in the street, people moving there kids away from me or not letting them sit next to me on the bus in case they "caught" something. By the time I left school in the mid 80's getting a job once you showed them the bloody registration green card to prove you where registered disabled, one of two things happened. You where either hired straight away as they needed to get their minority figures up (got to love the government for there bloody stats. See they where always target driven pen pushing idiots), even if you could't do the damn job or you where too much of a liability and would take too much time off .

At least now we have things in place that doesn't allow that. But hold on? Isn't that exactly whats happening now? Could it be because we have got too far up our own arses about our rights we are now making it easy to  be villianized by the government making employers think twice? Making people see us as nothing but scroungers on the system? You know how they like their scape goats. Am sure I also heard something in the news about a card system so you can register as disabled? funny that isn't it?
Over the years I have managed to fit in one group or another that has been villianized by the government, media or the public in general. Hell in fact now I see how many I can fit into in one go.

 It started off with being disabled, then it moved onto large families, if you had more then two kids you where getting pregnant for the money..I have six , worked with every single one of them. Every-time I had a child I got a better paid job.
Been told four times am not fit to work. Now am working towards a degree and starting my own business because I have become unhireable due to my health issues. Then it was because am obese. That made me a target to be fat shamed, ridiculed ( good job i was used to that from being a kid, god knows I might have actually been offended) and again labeled as a scrounger because due to no fault of my own I became over weight. Nothing to do with having six kids, two amputations, being stuck in a wheelchair or the medication that makes you gain weight, hell don't even think about the health conditions themselves that make you balloon up!
Wasn't there even that half baked woman who thought she was famous because she was mouthy, made videos on you tube like millions of others? thought it was acceptable to "fat shame", that's right she wasn't half as famous or untouchable as she thought she was as she got her ass canned by her company.
 Unless you are overweight ad a not talking about a "pot belly" or carrying a few extra pounds, am talking about carrying the upholstery of a sofa like me, then you have no idea what you have to deal with, you don't need some one mouthing off on how disgusting you are, how much of a mess you look, how you make them feel sick when they look at you. Do you not think we feel the same? I know I do. Every day I struggle to make myself look good, or at least so people will not think I look a mess or feel good. Every day I feel the stares just off me being larger then most, the whispers (although it makes a change from the stares and whispers about the legs or the wheelchair) The consent battle to find clothes, nice clothes, clothes that make you feel like a women and you are not wearing a tent. That's not to mention the fact that instantly you are de sexualized. Men /women no longer flirt with you, say nice things about you or to you in fear that they will be called by their friends for being  a "chubby chaser".  Every women , regardless of age, size,ability or marital status wants to feel attractive, to be told the're attractive, to still be desirable.
But that doesn't happen, you fall into those categories then you become invisible. You watch every body else being flirted with, having fun being told how beautiful they are and the most you get if you are lucky? One of two things. A) shame a pretty girl like you is stuck in that( or some version of that where your looks are disfigured by the wheelchair/ disability) or B) you don't sweat much for a fat lass. Hell am totally screwed, good job am married to a man who loves me for me really as you couple the weight with no legs (often seen as a fetish ) and in a wheelchair I would be a non person on the dating scene, unless I was picked up by some one who had a fetish for one or all three of those things. Then again I was once asked to do photos for an amputee fetish site and still got insulted by being told " your not the normal size they like, your a bit big really but am sure they are men out there who are in to bigger amputees who might see you as beautiful...... ". Me and my husband have actually lost count over the years how many times we have been asked if he was a devotee and is that why he married me.
 Yea go figure !
Then came the disabled (again). The disabled need their benefits cut, disabled are all pulling a fast one. We are all layabouts who don't want to work and make all the hard working, tax paying people of this country sub us. Yea I admit there are people out there who say they have a bad back and can't work who then get up a ladder to tile a roof or lay a carpet, (obviously not whilst up a ladder..but hey who knows). But that's a very small amount compared to the millions who really do need the help. I have worked since leaving school at 16. When no one would hire me due to my disability I went on training programs. I would write a 100 letters a week for jobs. All I wanted was for people to give me a chance and that's what it feels like am having to do all over again. Justifying why am not working, why I chose to have six kids, why am overweight, justifying why I wont get annoyed about labels and terminology people use to me. Get real. I have bigger problems the worrying if some one is taking the piss out of me by holding a door open, in fact am grateful !

I tell you what gets my goat. People who are bitter about their lot in life. People who can't see past their own hatred and bigotry,  People who tell me that I can't call myself something or use a certain phrase in connection with myself. Why? if I want to say that am wheelchair bound how does that effect you? If I want to make a joke and say I haven't got a leg to stand on, tell me how is that offensive to you? Am taking the mick out of me, I can do that if I want. I really do not need you to think or make my decisions for me. You know whats EVEN worse then that? When it's some one who is not disabled..sorry able bodied? bipeds? sorry not sure of this weeks new PC term, or some one who has recently became disabled and has not had to live their whole lives like that. Normally (and am not saying all before you try to lynch me), they would have no interest, concern or reason to look into how disability terms are used or how people are effected by it. Then by some unfortunate stroke of fate they find themselves in that situation. All of a sudden how you are "labeled " becomes a big deal. Believe it or not am just as guilty for it. Before the amputation I had no idea what life was like for some one who used a wheelchair all the time. How much it impacted on the day to day things not just for them but for their friends and family. Now I do, but that hasn't stopped me from living my life trying to inspire others to push their limits.

Nor has it stopped me from being the most un Politically correct person you will ever come across and long may I reign.


(If you find yourself effected by any of the above issues and need to talk, you can get in touch with me at thepsychtwins.bravesites.com or through our Facebook page https://www.facebook.com/psychtwinsfundraising/?ref=tn_tnmn)


Tuesday 27 October 2015

NO NEWS IS GOOD NEWS OR SO THEY SAY

Things have been a little hectic since going back to university.

Every thing going well, lots of reading of psychology books as you would expect, assignments already starting to come out of the woodwork and this year we have a new support worker, Gail. There was no issues getting the taxis sorted back out and things seem to be running smoothly at uni for a change although debating the psychology of religion is interesting. However I cant say that in other areas of my life.

My farther, since being diagnosed with mixed dementia just before I returned to uni, has received no help what so ever. In fact the social worker that was assigned to him decided that because she saw dishes in the sink and assumed (wrongly) that meant he had eaten that day (in fact those dishes had been there for a number of days, that she saw no rubbish (because my sister had cleaned the house just days before, which we told her) and she could not smell any bodily smells ( will leave that one to your imagination), then he was capable of making his own decisions. This even though the CPN who was there knew the consultant from the Dementia clinic had declared that just looking at him any one could tell he was "not all there ". Lovely man (insert sarcasm here). Don't even get me started on the way he treat and talked to my dad.



So we are slowly watching his money going missing, his house going to wrack and ruin and him not changing his clothes or eating because we can not get help for him. This all due to this social workers recommendations on him being capable.

So that on top of uni work. Then you need to add on my health getting worse.

 With the onset of the colder weather now in the UK ,my joints and mobility are getting worse and so are my stumps. Already on paracetamol, Nepfom and Tramadol. So after ringing the doctors I was put on Oramorph 5 - 10ml every four hours. Not a good thing for uni. Have been taking 2.5 ml in the hope that I could get away with that. Nope. Needed to up it to 5 ml a couple of days ago. This made university very interesting yesterday. We where doing a spot on visual attention, so here's me high on medication trying to count how many Blues are in the song Blue by Eiffel 64 at the same time trying to find Wally.......I think I was an outlier....it was a very trippy effect to say the least but the lecture found it amusing to say the least. Today I have woke up with a swollen  right stump and purple spots all over the bottom of my stump. Putting the liner on is like a million shards of glass in my skin and that's before putting weight through the leg. My initial thought is a reaction to the Morphine due to upping the dose. So off I come. The pain is unbearable, but am grinning through it like I always do, hoping that tomorrow its manageable and I can get into uni. I have an assessment on the 4th of November for an electric wheelchair, which if I get it will make my life so much easier giving me so much more independence.

So now we have uni work, dad with dementia and pain increase. Then you need to add the event in the mix.

Last Saturday we held a promotion at The Bridges in Sunderland . This was to promote the Halloween Monster Masquerade Ball on the 31st at the Stadium of Light, but also to promote what The Psych Twins do.
The response was fantastic and in just little over a week we have had 700 new visitors to the site. We are thrilled. The final preparations are in place now, balloons for the tables booked, decorations for the room ordered and costumes bought. I am going as Cruela De Vile. I have even bought a Dalmatian cuddly toy to hold and stroke so am going to look like Blowfelt from James Bond....just with no legs, well plastic legs..you know what I mean.

For information on our event go to https://www.facebook.com/events/417935758373799/

Facebook page is https://www.facebook.com/psychtwinsfundraising

Twitter https://twitter.com/psychtwins

Website http://thepsychtwins.bravesites.com/

If you would like to donate to The Psych Twins http://www.jumblebee.co.uk/post/trvDZTEUem

Sunday 13 September 2015

NEW START - NEW ACADEMIC YEAR

Back to University next week.  Getting broke in gently as there is only the welcome back meeting on Tuesday for an hour, but there is a catch up with the Thinking Ahead group. This is the group I joined last year that raise funds and awareness for Student Minds, also the reason I shaved my head if you remember. The only thing am not looking forward to is breaking in a new support worker who will help me get around Uni. Hoping she is not set in her ways or used to patronizing disabled people or the next year will be explosive !

Then its back to nose to the grindstone the week after as we get into full swing with our second year on campus. Still plenty of other things to keep me busy as well such as marketing and selling the Halloween Masquerade Ball tickets for the 31st of October https://www.facebook.com/events/417935758373799/
On top of this there is the decorations to order and the itinerary to sort out of who is responsible for what on the night. All of this on top of still having to finish up my CBT diploma I started half way through the holidays and being invited down to Merseyside to be a director with another charity and help them with their fundraising. Add to this that I have also applied for press passes for The Amputee Diaries to various comic cons and events, including in the USA, means that am going to be a very busy girl !

I am hoping to do more reviews for people who have disability's as I strongly believe that being disabled should not stop you from living life to the full. More venues and events are now aware that these things need to cater to every one, but don't always see the world from our perspective. They may think they have covered every aspect of the event for disabled people when in fact they are missing things, sometimes little things, sometimes HUGE bloody things and that is where my reviews come in. Not only to help people but also planners and businesses to address these problems, be more inclusive and in fact increase their revenue stream, audience and fan base. In fact since losing my mobility pretty much, my health getting worse, nearly dying during childbirth with Toyah, my dad being diagnosed with dementia and my mam dying, I have came to realize that life is just too short to worry about what people think and waiting for the right time to do something. Hence cosplaying and all the trips to Disney.

We are still waiting for social services to arrange visiting my dad to assess him for help due to recently being diagnosed with dementia. Since the diagnoses we have pretty much been told that we will have to fight for every scrap of help we get. Typical. It is so frustrating being stuck in this chair sometimes, feeling useless, watching people you care about needing assistance and help and knowing that there is absolutely nothing you can do to help and feeling that  you are no use at all.

This got me thinking about being a parent and disabled/wheelchair user. The issues it brings I think are unique, something most people will never experience. The first thing you notice is how much you have to adapt certain things to make them work. The next is how much you actually relay on your children for help. Basic things such as house work, doing the washing, cooking sometimes getting clothes on or off depending on if you are having a flare up at the time. My mind though I can keep active which am thankful for. Hence the reason for the charity and uni I guess.

 I am no longer interested in possessing things, but in having experiences. The bigger the better. Life does not have to be over just because you have suffered a tragedy in your life. Nor does it have to be over because of your age, after all its just a number, just like your tragedy, disability it does not define who you are.
People often forget to stop and take in the beauty around them, see the fun in most all situations and live life every day as if it is your last. Take chances, have fun, don't be scared to make a fool of your self ( hell I do that all the time that I don't even need to practice it any more ). But then again it has taken numerous tragedy's in my life and 46 years on this planet for me to do these things. Its not something that comes naturally to us but needs to be learnt, just like every thing else. There is no book on this, you can read as many books around this subject as you like but it will never enable you to do these things or be this way. That, am afraid, is down to you and you alone. In fact I think the more gadgets and tech we invent to make our life easier just clutters it and makes it busier. In fact I think people or trying to use so much tech and gadgets these days to free up time that they have less time then they did before !

Sometimes I think it would be fun to write a book based on my life, the husband thinks I should. But honestly I don't think any one would buy it as it would seem so fantastical and unbelievable. The things I have been through, the things I have done and seen. Hell plot lines of soaps  or more believable then my life some times. This summer alone I have :
Started a charity
organised and event
got donations for prizes
received press passes for a film and comic con
interviewed Chris Judge aka Tel'q from Stargate
interviewed Gareth Lloyd Davis aka Yanto from Torchwood
interviewed Doug"Hacksaw" Duggan from the WWF
Spoke to Michael Bien from Terminator
Spoke to Robert Enguland from Nightmare on Elm Street
Traveled to Glasgow
Done a diploma in CBT
bought a new car
been in a local newspaper
soon to be speaking at the local college to new Psychology students starting the extended degree course
went to a VIP event
had business cards done
had a shopping trip away
applied to be a zombie
got involved as a possible director for another charity
reunited with my dad and sister........and that's in 4 months imagine what I have done over the last 46 years! Some highlights are - insulted Eric Clapton (in my defense it was an accident), lived in a hotel suite for a month, been put before Westlife, drank with Bobby Robson, did a screen test for Matthew Vaughn for the film Kingsman.........

See life is not over, its only over if you let it be.

People look at me and see an overweight, middle aged women who is in a wheelchair with no legs. If they only knew......:)

(If anything in this blog or the other blogs have effected you and you would like to talk to some one please feel free to get in touch.)

Friday 4 September 2015

FROM THE HIGHLIFE TO THE LOWS IN LIFE AS WELL AS THE GRITTY BITS.


And the world moves on…

 

Just had some devastating news regarding my dad this week. He has been diagnosed with mixed dementia, which is both dementia and Alzheimer’s disease. It’s aggressive and already at the stage of forgetting who we are, to eat, take medication, change his clothes etc, not to mention the mood swings and how he can sometimes be verbally abusive to my sister.  The doctor at the specialist clinic was so off handed about the whole thing when giving us the diagnosis and the way he spoke to my dad was if he was rubbish or not even there. He offered no support, medication to help with his anxiety and nowhere to turn to.

This got me thinking about how I was perceived by these people. The feeling after seeing this doctor at the specialist clinic, who when I started asking questions regarding his brain scan, demanded to know who I was and if I was in the medical profession and how did I know this information,  was very much that I had achieved or done very little because I was in a wheelchair and disabled. By the look on his face it was obvious that he had wrote me off being in a wheelchair. The look of amazement and shock on his face when I told him I was at University studying psychology was priceless! Needless to say his attitude towards me changed but not towards my dad.

The same thing happened with his GP.  Even though I was the one asking the questions and talking to him his whole body was turned away from me and all answers where directed to my sister and husband. This is extremely annoying to say the least. It also seemed to infuriate him that I could use the same language has him. This resulted in him picking up on any mistake I made about dementia or the brain even though I told him I did not know anywhere near enough information to understand what was going on completely, but that doesn’t mean I can’t make educated comments or guesses.

At this point I also started to wonder if other people with disabilities got treat the same way from so called “caring “professionals? I can never remember being treat like this before the amputations or pre wheelchair use. But this brings me to other small things that I have noticed but hasn’t really hit home before now. Such as automatic doors into places. You have them working or always open but have you noticed that if you have a pram or someone in a wheelchair you are the one waiting for other people to finish using it and wait for them to let you through? There can be 4 or 5 other doors for people who are able and capable to go through, but no, they would rather que, tut and moan and wait for you to get through, force their way through WHILST you are trying to go through, my personal favourite…quickly jump in front of you or step over you to go through ahead of you instead of thinking to themselves “ wheelchair/ pram coming through I will just use my hands and arms to push another door open to go through. What is even funnier with this is the look they give you as you are waiting on them to finish and let you through, it’s as if you are shit on their shoe or an inconvenience to their lives somehow, that’s if they can even be bothered to look at you. Some prefer to pretend they are not ill mannered or ignorant by looking straight ahead and not even acknowledge you are there.

Then there are the problem solvers. They can be a stranger, care professional, friend or even a family member. The ones who will try to fix everything when all you want is for them to listen, believe you when you say you have tried and maybe understand a little.

 Let’s face it, no one will truly understand what it is like to live with your disability on a daily basis or what you go through just to do something that before, or other people take for granted. I wouldn’t wish that on any one, but trust us, if we say we have thought every which way to try and do something or we tell you we can’t do something or something won’t work, or even if it’s a case of we have a hang up about doing something so we don’t want to do it, please, believe us, its true. Although you mean well and are only trying to help by finding a solution you’re not. All it does is infuriates us (well me anyway), makes me feel useless and as if am trying to get out of whatever “it” is. It also makes us (and again by us I mean me) feel like more of a nuisance and/or failure when we do try your “fix” to the problem, even though we have told you it won’t work, and fail, because guess what?....it wasn’t going to work like we said to start with.

My husband is a fixer and God love him, he really try’s to work outside the box so I can experience and do what I want to do. Sometimes he comes up with things I have not even thought of trying or considered, which is great! But other times he goes on and on trying to find a solution even when we have exhausted everything logical and inventive that won’t humiliate me or end up hurting or endangering my life. It just he is so focused on trying to find a solution for me because he wants me to be happy, that he doesn’t see when it stops being helpful and becomes painful or upsetting because he is going on and on about it. At this point it just feels that it is being hammered home over and over what I can’t do and am useless.

Until just last week he didn’t understand why it would upset me after a while of looking for a way around something. When I explained it to him he told me that he knew it upset me when I couldn’t do stuff I wanted with the family and all he wanted to do was make it so I didn’t miss out. What he hadn’t realised is how much it could potentially upset me when there was just no solution to be found and he kept trying to fix it.

Maybe it’s just me. It wouldn’t surprise me really. I have always liked to be different.

Sunday 23 August 2015

LIGHTS.,CAMERA, ACTION - OR IN OTHER WORDS FILM AND COMIC CON GLASGOW 2015

So it was amazing news two weeks ago when we found out that we had been allocated press passes to film and comic con Glasgow. This was a great opportunity for me to find out exactly what differences there where between Newcastle and another venue Showmasters used, if they had made changes to how the event dealt with disabled attendees and family’s and a great chance to speak to the guests who were attending to find out their thoughts on the event, cosplaying etc and a great chance to review the good and bad and downright ugly of being disabled and travelling and attending a convention.
So we packed a bag and off we went ready to take on everything and anything that would be thrown at us in the aid of the amputee diaries and The Psych Twins.

We travelled by car up to Glasgow on the Friday tea time. Over all it was a 4 hour journey including a slight misdirection through Glasgow and stopping off for a break. This was where the first problem was encountered. We stopped at the Welcome Break services at Gretna Green. There was plenty of disabled parking spaces right at the front near to the entrance to the services. Access was good with automatic doors and all shops where accessible. However the only disabled and baby changing toilet in the services was out of order, with no idea of how long it would be out of order for.
 Now although difficult for me to walk any distance, it was a necessary evil unless I wanted an accident to happen. For people who cannot get out of their wheelchairs or a family with a special needs child or even a baby to change, this was not acceptable. There was no other alternative to this situation unless you wanted to risk however long till he next service station. Travelling back on the Saturday night we stopped at the same services and guess what? That’s right the disabled toilets where still out of order. Obviously the engineer they had called was on a go slow or didn’t do weekends!

We arrived at the Travelodge at Breahead Glasgow around 9pm. Situation was excellent as the shopping centre where the event was being held was within a 7 Р10 minute walking distance. The hotel had plenty of parking spaces and right next to the entrance. Doors where automatic so no struggling trying to open doors and the staff where very pleasant and helpful. The whole area of reception, bar and caf̩ was accessible and clean although basic, but you get what you pay for. I had requested a disabled room and included breakfast. The room allocation was excellent down stairs not that far from reception. Only issue was if you were travelling on your own then the doors are heavy to get through to the corridor where your room is situated and your room key card has to be used to open them. This would be something you would not be able to do on your own unless you are a lot more flexible and resourceful then me, which is a possibility, otherwise you will need to ask a member of staff to help.
Entrance into the room was wide enough for my wheelchair which is wider then a normal chair.  The room was very spacious with room for me to manoeuvre in the wheelchair. Everything in the room was accessible from the wheelchair apart from the shelf above the clothes rail. The bed was two singles pushed together but very comfortable with a call button on the head board.
Again the room was sparse but as I said earlier you get what you pay for. The bathroom was huge and very spacious, lots of grab rails, lowered sink and mirror etc. but was very disappointed in the disabled shower, never mind how dangerous it was!
The controls where accessible but no shelf to put any toiletries on such as shampoo and shower gel so reaching for them would be dangerous ( actually impossible for me to do). The fold down seat was way too small and it was not possible to sit on fully, so was more of a perching stool. Well this caused an enormous amount of problems for me! Having to remove both of my legs to enable me to shower, this left me feeling as if I was falling forward. You needed your legs to brace yourself when sitting down. So for someone with no legs, weak lower limbs or unable to use them at all would have major issues using this shower without having an accident! In fact it was so bad that I had to ask my husband to come in and help me get shampoo and shower gel and to make sure I didn’t fall. In order to do this I had to brace myself with my hands on the grab rails. Now for someone with fibromyalgia this was extremely painful as all my weight was put behind this as it couldn’t be put through my legs. I had to risk taking one hand off a grab rail in order to get shampoo or shower gel put into my hand by my husband so I could wash. Even then it had to be quick and couldn’t be done properly as I kept falling forward. Basically if my husband had not been there, there was no way safely I could have had a shower on my own. When oh when are companies going to realise that there are more than just infirm or elderly people and not every disability or wheelchair users needs are the same? Travelodge take a leaf out of Disney’s book please, before someone has an accident.

We decided after the long drive to just eat at the Travelodge for tea. Poor choice. Got the steak sandwich with chips. What I got was tinned steak in buns with frozen chips. With two diet Pepsi’s that where smaller then cans, it came to £22. The breakfast was an all you can eat buffet thing but choice was minimal. There was plenty of facilities nearby so if you didn’t want to eat dinner or evening meal at the hotel then soar, across the road and parking lot, has lots of other options.
The arena is actually part of the shopping centre. If you have ever been to the Metro Centre in Gateshead then if you can imagine where the food court is and Metro Land used to be then that was where the arena was.
Car parking facilities where fantastic at this shopping centre. We had never seen so many disabled parking spaces so close to the centre before at a shopping outlet.
The que was already huge when we arrived at 9.30 am and with it being held in a shopping centre there was a few issues for any one shopping in that area and trying to get past.  We hunted down a staff member, who seemed to be few and far apart and it was very unclear as to where you were supposed to que for early entry and std and there was no indication at all if you had a press pass. We were told to show our email to the staff on the door. We were then given our press passes and we were off. 
Inside there was no foyer area so nowhere to wait for people or hang around for a break. The one saving grace was with it being in a shopping centre you could come and go as you pleased as long as you got your hand stamped. This meant that if you wanted a break from the madness and the crowds you could go out and sit in the food court, grab a coffee or something to eat or if you where going to be waiting for a talk or photo shoot to happen, the option was there to look around the shops etc. This however led to its own issues. Later on in the day you were stepping (or in my case trying not to roll over) people who were sitting on the floor everywhere. This was obviously also causing issues for shoppers in the centre who were not attending the convention.

Once in you were faced with loads of stalls and traders of all kinds. Yet again showmasters had crammed in so many stalls that manoeuvring around the stalls and up and down the aisles was bad for any one, but was a logistical nightmare for someone in a wheelchair or with a pram. It made it very slow going and sometimes very frustrating to get around with some stalls being total inaccessible to any one in a wheelchair. They had spread the guests out over two floors. Plenty of room for accessing the downstairs guests but could see that as the day got busier the lines could be confusing. Access to the upper floor was via stairs, with no signs to indicate where the lift was to enable me to access that level. After spending a moment trying to ascertain where these where we give up and looked for a member of staff. That was easier said than done. Volunteers seemed to be in blue t shirts and pit bosses in red. Very few around. Eventually chased after one and asked a pit boss how to access the top floor. She seemed a little confused then pointed us towards the service doors and told us she didn’t know but had been told to point people in that direction this looked like no access to a lift but we trusted she knew better and tried to get through the heavy doors. As we did a security guard belonging to the venue came over to get the door for us. As he was doing this he asked where we were going so told him that we were looking for a lift to access up stairs. At that point he told us that we had to go back out of the arena, across the food court and the lifts where there. After getting out we had to cross the food court upstairs and round the corner to where the box office was for the arena. The doors where sealed so had to wait to be let in by a security guard. Once up there we did notice that there was a service lift and wondered if this was where she had been directing us too. Up here there was the other guests but instead of spacing the signing desks out they were all cramped up.
This made queuing difficult and again the lines confusing to follow for each guest and this was before they let in pay on the door and std ticket entry’s. When it got busy it was nigh on impossible to get through to any of the lines and trying to que without getting in peoples ways was not possible.  Staff up stairs, both volunteers and pits bosses where sparse to find and there was no Virtual queuing system so the ques where getting out of hand very quickly. At Newcastle the pit bosses and volunteers where very helpful with me being a wheelchair user and there was plenty of staff around. At Glasgow however as well as very little staff there were no concessions made for people in wheelchairs or disability’s including people on crutches. Their website itself and staff have stated that anyone who is disabled would be moved to the front of the autograph ques to make access easier for everyone but this did not happen.
Before they let the standard ticket holders in and pay on the door through it was already jammed packed and difficult to manoeuvre. On my way to interview Chris Judge, just before noon they had moved the people queuing to around the food court instead of down the centre where the shops where.
Yet again I think Showmasters underestimated the amount of people who would be attending the event equal to the size of the venue.
There was some issues as to where wheelchair users accessed the talk areas. The husband had to park me up out of the way of people and exits, (not easy) while he tried to find someone to assist, (did I mention the lack of staff?). This resulted in me being parked down in between two stalls. As I was waiting for him to return David Prowse (Darth Vader out of Star wars, for those not aware of this character or the films (shame on you)), came up beside me. Due to his failing health he was also in a wheelchair being pushed by a volunteer from Showmasters. As the volunteer was trying to sort out a rubber ramp type thing he noticed the Darth Vader sticker on my prosthetic which made him chuckle. I happened to mention how ridiculous it was trying to get around in a wheelchair to which he agreed.
We eventually found someone who directed us to a small door where we could see the talks. Although it was technically a space at the side of the stage next to a speaker and the area where the guests actually entered from, it wasn’t too bad. Then again it depended on where you were positioned as you were not looking straight on at the stage but having to turn to the side and past the person sat next to you. It also meant that come the Q & A time you were pretty much over looked if you wanted to ask a question of the guest. The space realistically could only fit three wheelchairs and their companions in, any more was not going to happen.
By 2pm the que showed no signs of dying down and even by the time we left at 3.30 pm people where still queuing to get in, even though there was barely any room to move as it was at this point. They had stopped people from entering and to be honest I am not sure how they worked out when enough people had left to let any more in due to most people being able to come and go with a hand stamp into the shopping centre. Yet again I think showmasters under estimated how many people would be interested in attending and in future should consider providing more things such as enough staff, directions being visible and accessibility of the venue chosen all need to be taken into account. Bear in mind Showmasters if you have disabled guests and attendees attending and you chose to book somewhere that looks accessible, my advice is, still check for your selves. Might be an idea to take on someone who can deal with these issues specifically. Spread the stalls out as well please this would help everyone in the long run. We know more stalls equals more money from traders per table but think about the people attending and how much more money the traders would make if everyone could access their goods and services Just a thought.

I think that these events are going to become more and more popular in the UK simply due to the fact that the fans and collectors are becoming more and more aware that they exist in this country and are no longer the privilege of the States. The celebrities are also more aware that the demand in the UK to see them is huge so more and more are going to be willing to attend these events here. People are also becoming more involved in the whole thing as they look for more places where they can go as a family and where better than some where the kids can get involved in dressing up, meet Darth Vader standing alongside Captain Jack, where princess walk the isles and all their comic and film
book hero’s and heroines come to life and not only that they can have their photo taken with them as well! All this while seeing their favourite actor out of a tv show or film and Mam and dad and grandparents can all get involved in the fun, whilst re living their youth meeting actors and actresses from their favourite 80’s and 90’s shows and films whilst at the same time picking up that must have print or collectable for the sitting room.
So come on Showmasters unless you want to be elitist and only appeal to the hardened film and comic fan or collector, cater more for the disabled, the kids and the families who really want to attend just as much as the diehard collectors and fans. The people I spoke to who said it was their first time where definitely thinking of becoming return revenue for you. Isn’t that what you want?

Chris Judge who played Teal’c in Stargate Atlantis, very kindly agreed to give us an interview. He got into college on the back of a football scholarship but was not that serious about playing as much as others where and was always geared towards acting. Originally doing pre-med at college he minored in Psychology and as a fellow Psychology Student I had to ask him about Statistics. It seems that all Psychology students around the world dislike it which is good to know I am not alone. Jim “Hacksaw” Duggan was another star I was lucky enough to talk to. Both he and Chris Judge thought that fans at conventions in the UK were fantastic, a lot more friendly and easy to talk too compared to the USA. Across there it is perceived as more of a business then an experience for fans and fans in the UK made it seem more human and hands on. In fact every one of the celebrities thought that conventions where more like one big family and they definitely seem to love that fact.
With regards to disability’s all the people I talked to saw it as no reason not to attend one of these events if you have a chance and I agree with them. There was definitely more people attending with prams and small children, who’s eyes just positively lit up when faced with all the cosplayers. A lot of the stalls here seemed to be catering their merchandise towards children although there was still plenty for the avid collector to buy, trust me!

Speaking to some of the attendees the biggest issue was once again the lack of room to get around with a pram or wheelchair, lack of staff support and lack of signs for lifts etc. Some guests were unaware that it was spread out on two floors or in fact how to even access the second floor. In fact am still trying to work out where the disabled toilets where and I have been home since 9 pm last night!  Although once found all staff where friendly. The general consensus as well was that there was no reason not to give people with disabilities extra help when getting autographs and photos done and the majority of people I spoke to have no problem with this. I am hoping to be allocated a press pass for London in the winter just to see how they deal with one of their biggest conventions in the UK, which due to size is now being held at Brighton and I will be attending (in full cosplay) the Newcastle Comic Con in November not just for pleasure but to see if they have taken anything on board from other cons and changed anything from March.
 On the subject of Cosplaying both the guests and attendees all loved to see all the cosplayers in their costumes. Robert Englund especially liked to see the fans dressed as Freddy and approved of the cross gender cosplaying. They thought it added to the overall
atmosphere of the convention and the fun of it. All the guests found it flattering when faced with a fan dressed as one of their characters, but shocked to find out about the bullying that takes place in the cosplay community.  They were also surprised about the image the UK press had given it recently. Chris Judge thought that the Sci Fi community and the convention community in general where more evolved and accepting of peoples differences, which is why I think it came as such a shock to him in particular.  Speaking to some of the cosplayers themselves, nearly all of them had experienced some form of bullying or inappropriate touching from other attendees at the conventions and even some outside of conventions such as taking part in photo shoots.
Out of the Cosplayers I spoke to all agreed that cosplaying and being part of that community helped them overcome issues such as depression, anxiety and social shyness as well as boosting their confidence and making new friends from all over the country. Convention etiquette is simple. If you would like to have a photo taken with someone in cosplay, ask, do not assume and don’t touch their costumes. Some of them take a long time, hard work and lots of money to make, having someone come along and paw at the costume or them is not acceptable. If you like a costume, tell them if you don’t, keep it to yourself. Out of all the cosplayers not one of them said no to an interview or photo when asked politely.
Oh and if you really want to know as badly as I did if people preferred Marvel to DC… Marvel was the winner. Although some arguments continued after I had left on the subject matter.


 Most of the people I talked to had not heard about iCosplay, although out of those that had it was mainly cosplayers. I mentioned that it was a charity that existed to stamp out bullying in the cosplay community, which was given a positive response, but the general overall consensus from the stars and attendees was, disabled or not, attend a convention, see what it’s like for yourself you might just like it. If you’re worried or nervous about cosplaying at a convention, take a chance, pick your favourite character and just express yourself, if it helps to bring you out of yourself, or makes it easier to interact and talk to people then even better. They very much seemed to see it as a form of escapism as well as fun. If you do experience any kind of bullying for any reason then tell someone don’t keep it to yourself and most of all at the end of the day enjoy it. Personally I really enjoyed
cosplaying. My first time was at Newcastle comic Con in March this year. I was worried about what people would say and think, especially with me being in a wheelchair, in my forty’s and overweight. I was so glad I did it though. The amount of people cosplayers and non-cosplayers and even guests who came and talked to me, liked my costume or wanted a photo taken with me was unbelievable and it was so much fun, I was hooked from that point on!  As Gareth David Lloyd, who played Yanto in Torchwood said, if you don’t like it then you don’t have to do it again. So whether you cosplay are not in the immortal words of Shia la beouf – Just Do It!
Hired The Stig as the getaway driver after starting arguments over Marvel or DC !