BULLYING

I thought to be a disabled child and in mainstream school was bad during the ’70s and ’80s before the Equality Act 2010 and its predecessor the disability act of 1985, but how wrong could I be?

I look at the kids who are going to school today who have anything that is different about them, not just a disability and my heart brakes. What’s worse is it is now happening in the workplace.

Instead of things being more inclusive, accepting and equal, it appears to be even more judgemental, harsh and segregated than ever. My son is Autistic and has been bullied the whole time through school, but things have steadily got worse as the years have gone on. As he has learned not to give in to his bullies, to feed their narcissistic satisfaction of reacting, they soon learned that the way to get to him was through his little sisters and touching his books and pens. This resulted in this year, him and one of his younger sisters being surrounded by 20 kids and jumped on, being beaten to the ground, hit with sticks, having stones thrown at them, their things thrown around, bags jumped on, name-calling and my son having his legs, sides , and head kicked . All this just outside the school gates, when the crowd was starting to form at 20 strong, the teacher on gate duty walked up, told them to disperse and when he got sworn at turned his back and walked away. The school's reason for this? Because he’s not insured outside the school gates and the teachers union would have kicked off if he had been injured. What happened to being a decent human being? What happened to be in that type of career because you care? If that teacher had stayed with my son and daughter, then they would not have been assaulted.

The school's solution to all of this? To separate my son, for my son to be the one removed from the class and his friends, for my son to have to get into school early so he can get into his classes before his bullies show up. For my son to have to go to a special room on his breaks and for my son to be the one who has to leave school 5 minutes before the bell in order not to get trapped in school or walking home at the same time as the people who assaulted him. The police? They could not get one witness out of the 20 children who surrounded them to give the 3 boys names up that had physically and verbally attacked my son. The police wanted to prosecute under the hate crime law, something that I believe as not yet happened to a minor in this country and the exact reason this law had been brought into effect for.

This is just one example of bullying today on our streets and in our schools, not to mention the unseen bullying that takes place every day in the workplace. Just because we are adults does not mean we are exempt.

The police seem to have their hands tied between the perpetrators having such sway over a certain sector or people or area, to people being too scared to come forward, to their own crown prosecution who won’t take a case to court unless they can guarantee a definite win and besides, don’t like prosecuting children.

Schools are just as bad. They're too scared of upsetting parents of children who are out of line, for fear of being accused of discrimination, repercussions from the law as the law seems to more and more to support the lawless. Teachers more and more are wrapped up in paperwork, red tape, and bureaucracy. What’s even worse is that more and more teaching staff seem to be just as bad as the kids that are doing it. I hear more instances every day of not just children being the bullies, but the teachers as well. What’s worse is it no longer stops at the school gates, thanks to social media platforms and the internet the bullies can no access their victims 24/7. Parents who don’t enforce the rules because they don’t see the point “as everyone is doing it/ on it” or simply they don’t care, not interested or just can’t be bothered with the aggravation of standing up to their little precious. Not only that but so many of these parents have no idea exactly what their little darlings are getting up to on or offline.

What about social media platforms? What are they doing about this epidemic? Well as much as they lawfully have to, which is nothing much. They have rules, if it’s reported and their not inundated/ lose it /or can be bothered they will send a warning message to the little darling or adult (let’s not forget that this happens to adults as well!). Who is causing the pain, they will post up the rules to be ignored by everyone and they might even go so far as to ban, for a short time anyway, the person in the wrong, just until they can make another “fake” account of course.

And what about the victim? They go on as before, feeling unsupported, lost and alone. If they are lucky they will have a supporting family or network to help get them through this, which by the way, can last for years. My son doesn’t leave the house when he’s not at school, panics about walking home, went from a boy who loved learning and wanting to go to University to someone who struggles every day with depression and hates going to school as he just wants to leave and completely has a meltdown if he is stuck in the open on his own

I thought bullying was bad when I was at school, but at least I left my bullies at the school gates, the teachers had time to care and to listen and the police did actually have power. At least when I was a child, the bullies where stilled scared of their own parents and still worried about the consequences.

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THE DAY THE WORLD NEVER CHANGED

A lot happened since I last sat down to write anything. The idea had been to start doing news pieces still around disability and mental health issues but more generic and fun then so dark and gloomy and not always from my point of few. Unfortunately, that has not happened.

When I first started this blog it was to chart my progress on the run up to my amputations, the recovery and what happened next. It then grew into something more for me than just an online diary that people may or may not be interested in reading. It became a voice, a way to tell people and show people exactly how difficult life could be when you are disabled, but also to show others in similar situations that there is hope and to inspire people to get out there and start living their lives the best way that they can.

Now instead of finding fun light-hearted things to inspire me to write about, life keeps throwing me curve balls, so all I write about is the injustice, discrimination and exclusion people with disabilities deal with on a day to day biases.

I thought growing up in the ’70s, before things such as the equality act came into being, that the future for anyone with any kind of disability would be brighter. But let’s face it here we are in the 21^st century and hate crimes or on the rise (just the fact they had to introduce a new law to cover these things says everything), and society is far from accessible or understanding at all, if anything I would say it’s less accessible in some ways, far less understanding and tolerant (and not just about disabilities) and less accepting.

Recently my son who has ASD and Tibia Torshin and my daughter were attacked on their way home from school, simply because he is autistic. Due to not being able to get a rise from my son who was trying his best to get home, they pushed his sister’s buttons, knowing that this would upset my son, trying to encourage her to fight. When my daughter refused they knew the way to get my daughter to lose her temper was to “trigger” my son, which they did. They did this by taking his bag, taking his pens and pencils out of his top pocket and knocking and throwing around his papers. This got them the reaction they wanted and he lashed out, hitting one of the kids who were in the midst of it setting off his triggers, name calling him, hurling abuse and mimicking his walking and talking. My daughter and son ended up getting kicked to the ground and repeatedly kicked in the sides, back, legs and in my sons head.

No one has been brought to justice over this, despite threats being made the week before about my daughter getting jumped through prank phone calls, despite ongoing talks with the school due to kids and teachers attitudes and bullying and despite reporting attacks that have happened previously to my daughters because their brother is autistic to the police. The children involved closed ranks, their families closed ranks and other people who saw what happened were too scared to say anything to the police for fear of reprisals. I even got accused of playing the victim, apparently having nothing better to do and my children accused of being trouble makers.

Welcome to a snapshot of equality and inclusion for anyone with a disability in the 21^st century.

There are still so many businesses out there that do not understand what inclusion for people who have disabilities actually means. “But they make all toilets accessible now to everyone as not all disabilities are visible! “I hear you shout, and your right, but we still have people having to change their teenage child or adult on a dirty bathroom floor for the sake of extra space to put a full changing space in. “But public transport has disabled spaces!” another thing you shout at me and yes they do….but you see people won’t move out of the space if someone in a wheelchair needs to get on that bus. There has been plenty of stories in the press lately about people in wheelchairs being stranded by bus drivers, having abuse hurled at them by the other passengers for holding the bus up or even having to let 2 or 3 buses go past before they could get on one with the wheelchair space free. Now am not saying people with buggies should stop using buses, but it is my understanding (I refuse to use buses due to these exact reasons and how much anxiety it actually causes me, I would rather just not go out!), that there is one side for prams and one side for wheelchairs, if that is so then why is it not enforced if someone using a wheelchair needs to get on the bus? When I was younger (fair enough buses back then were not disabled accessible at all !!), but anyone who had a pram had to put it down and store it, just like you would if you were using a car and putting it in the boot. Half the time people are leaving the prams up and then the child is getting out and walking to a seat anyway, so wouldn’t it just make more sense to fold and store? I know the struggle of trying to manage a small child, a baby and bags of shopping whilst trying to fold and unfold a pram, but you did it, you managed, you had too.

I still get confronted every day by discrimination in various forms, even sometimes from friends and extended family (not all of them unintentional either, but that’s another blog post), and it can be disheartening, to say the least, and sometimes if your mood is not good it can lead to depressing thoughts that make you wonder why you bother and why you keep trying to be part of society let alone a productive one.

So what happened to the bright shiny future we were all promised? , the 21^st century being all inclusive for everyone, everyone would be equal, no more segregation, no more discrimination?

In my opinion, for what it’s worth ( and after all it is my blog), sometimes there are days I stop and look around and honestly think it is worse now with exclusion and inequality towards disabilities then we ever were when I was a child.

 Now there’s food for thought.

Home truths – despair settles in

It’s been a while, dad has been moved into a care home due to his dementia getting worse and then was rushed into hospital where we were told that he had bowl cancer and things amped up at university with it being the final year. Change of location as the Psychology department was moved from St Peters campus to the City campus, final assignments, exams and final dissertation.

Speaking of changing campuses the trouble this has caused for me is unbelievable.   The move to the city campus was supposed to be a smooth transition until I found out that none of the lessons I had at the Priestman building where accessible. Add that to the up and down situation with my father, who as you may remember has mixed dementia, has caused me to miss out on workshops and lectures this semester. Leaving me at a disadvantage regarding my upcoming exams.

This all ended up with me in tears yesterday trying to hand in my dissertation project book and being unable to access the building and a able bodied woman banging on the toilet door in the shopping centre telling me to  hurry up…the disabled toilet  that is, which was being used by someone in a wheelchair…me.

People really don’t think do they? I mean we are supposed to be a society of caring, responsible, intelligent and understanding people…aren’t we? No… we are not!

I personally think that we as a society and a race we are de-evolving. I have tried for years to debunk the “them” and “us” divide but am wondering if it’s true after all.

No one will ever understand what it is like to get up every day and have to ask someone else for help you just to do the smallest of things like get out of bed, put pants on or stand up. It’s not just the embarrassment but the mental anguish it causes. I hate the way I am. I don’t enjoy it. I didn’t want it. It just happened and am left with the aftermath.

Society and the government sees me as a drain on resources, an inconvenience, someone to be singled out and criticised. Scapegoat for fraud, rising unemployment figures. My peers either pity me, or blank me there are very few who support me and have stood by me throughout this, but they, no matter how had they try can never understand what it is like. I have lost count of how many friends don’t bother with me anymore, or how often am over looked when it comes to nights out or family events, it’s an inconvenience you see. Me being in a wheelchair.

I  sometimes need help to sit up, get dressed, pick up things off the table or floor, get tablets out, and cook a meal. Don’t even get me started on having a shower. I can’t do stairs and need someone to help me step off a kerb. I can’t go anywhere on my own as I need someone to push me, I can’t walk the dog, go for a walk, swim, dip my toes in the water, go in the sea, walk on the beach, feel the sand between my toes, clean my own house, get to the girls room, wear funky socks, soak in a bath or even get in a bath or feel a carpet under my feet.

I take tablets morning noon and night and then in-between. They make me gain weight and bloat me even though I barely eat I still gain weight and can’t lose it. Yes I have the odd treat but you look at me, a larger lady in a wheelchair with no legs and the automatic assumption is “who ate all the cakes, pies and biscuits” and it’s thought that the legs where lost due to being fat, over weight and diabetic. They weren't. I feel disgusted in myself, don’t worry. It has been said to me that by someone that I am the reason that they have an eating disorder….they don’t want to turn out looking like me…fat.

The disabled complain about the “disabled porn” how we shouldn’t be inspirations, bollocks to that! I hope I am an inspiration to abled or disabled people. I work hard just to do day to day stuff never mind go out, work or go to university. 

I feel dead inside.

 I have sitting in front of the telly not leaving the house unless it’s my weekly one day a week trip to the town or off to the doctors or hospital to look forward to. No one would hire me due to not being able to guarantee when I would be in. I hate the way I am, I hate the way I look, and I hate my size. “Just go on a diet” “you need to move more look for wheelchair exercise” “just go on slimming world I did “yes and you lost weight because you are more mobile than me…it’s not that simple. I wish it was.

I get up every day, some days when I don’t want to. Some days I just can’t face it but I get up. Everything you take for granted, every little thing you do, needs the utter most planning for me to do or participate in, that’s if I can.

 A day out with my family, a meal, a trip or a holiday needs to be planned to every last detail. Access, toilets, fitting through doors, getting round, getting there. I worry constantly about getting in the peoples way or blocking things or places. I worry about being an inconvenience, the embarrassment and the mental torture I put myself through. When something goes wrong or there are issues accessing 

somewhere or something it makes it worse, it’s like ramming it home, rubbing it in my face.

I just worry.

This is not what I wanted, despite what you might think. I want a life, I want my life, I miss my old life.

Disabled Access vs Disable friendly - there is a difference.

There are times when you just get so fed up of trying to fit in to peoples boxes or ideas of what being disabled is supposed to look like, feel like or how it is supposed to affect you.

Being born with talipes I thought I knew what it was like to be disabled, different from everyone else and the difficulties that went with that…..I was wrong, so very wrong! It wasn’t till I had my amputation and got diagnosed with Fibromyalgia and Chronic Fatigue Syndrome that I found out what it was like to be disabled.

It’s so depressing and soul destroying when all you want to do is go out and enjoy yourself whether it’s for a meal, drink or shopping, holiday or stopping somewhere over night and you can’t or it’s just too much trouble to organise. Why? Because everything has to be planned in advance.

Is it accessible? Will I be able to get through with my wheelchair? Are the toilets downstairs? Do they have a disabled toilet? Would someone be able to push me up/down the bank safely? Is there a lift? Could I reach the bar? Am I going to be ignored/ stared at/ treat differently to everyone else? Can I get into / on to/ out of that?

These are just some of the things that I have to take into consideration every day when I want to leave the house to do anything. Gone are the days of just being able to get up and go without worrying.

You see people who don’t have to live with someone or who aren’t disabled themselves, things like this don’t even cross their minds or come into the equation. It creases me when shops, business, hotels etc have things on their websites like “disabled friendly” or “accessible” but when you turn up what they meant was they have a lift but you need to get up three or four steps to get into the building, or the door ways are maybe a little wider but still not wide enough for a wheelchair to get through or they are wide enough but there is a 90 degree angle to negotiate as soon as you get through the door.

What people and companies don’t seem to understand is “disabled access” does not mean the same as “disabled friendly”. For instance take my university. The psychology department has been moved into another building which is supposed to be disabled friendly, I say supposed to be as I haven’t used it as all my lectures are in other buildings. These other buildings are old, fair enough a grade II listed building means there are limitations to how it can be adapted if it can at all, I get that, but it’s as if the people they get in when adapting, updating or building these buildings have their heads up their arse. One building where the majority of my classes are they have literally took it to the letter of the law. They have made reasonable adjustments but just because they have made it accessible does not mean I can use it. The entrance is ether the service entrance, where I have to find someone to let me in or up a bank that you would need to be a strong man or marine to push me in my chair up the bank or back down safely. The lecture theatre is small with no disabled space for a wheelchair and if I was to use it I would be sat at the front of the class like a pleb in front of the only entrance/exit…can anyone say health and safety?

The inside is a horse shoe shape and is corridors with two or three steps up or down every so often so it means getting into a lift to go half a floor every time I change classroom, so much carry on, inconvenience and effort. All I want is to be like everyone else at uni..The only effort I want to worry about is getting out of bed in the morning and being arsed to attend!

It’s made me realise that everything I want to do, everywhere I want to go and everything I want to experience I have to work harder, or take longer or worse yet become a performing monkey while others stop to stare at the antics you have to go through just to do something that is taken for granted by everyone else.

And this seems acceptable, as a disabled person your dignity, pride and self-respect doesn’t seem to matter anymore because “we have made reasonable adjustments”. Reasonable adjustments is more than making sure there is a bloody lift!

It’s the same with shops that you can’t access for whatever reason “reasonable adjustments” means that if you can’t access their goods/ services then these should be brought to you. I ask you do you always know what you want to buy when you go to a shop. Or sometimes do you just want to browse? Especially if that said shop is new/ just opened. I don’t so when I go to a shop that I can’t access and someone eventually realises they have to help me access their goods this means I have to know what they have in the shop, what I might want to look at /buy….hey I am studying Psychology not bloody telepathy ! How the hell do I know what you have in your shop? That’s why I want to come in and have a look!! Hey don’t even get me started with the not being able to shop in privacy like everyone else instead of having my buying habits scrutinised by all to see. The temptation to go to Anne Summers and ask them to bring out various items from the back of the shop for me to view…..“I would like to see the 12 inch strap on with the deluxe gimp mask but not the ball gag…”

This is one of the reasons I started doing what I do with The Psych Twins if you are to redesign a shop, building new premises, holding an event etc get someone in who is actually disabled for god’s sake, not someone with a degree in technical drawing who “thinks” they know what it’s like to access these places in a wheelchair.

These people who design the buildings to be “accessible” or make the “reasonable adjustments” have no idea how much of an impact on someone’s life in so many different areas their decisions make. Why would they? After all am alright jack.

It’s not just the pain in the arse advance planning that has to go into everything I do or go, nor is it the fact that there are things I just can’t do/access or the fact that family/friends/colleagues stop inviting you places due to the “hassle” but the being put on display trying to access/ do whatever it is, the loss of dignity not to mention the self-loathing and depression that goes along with it.

Don’t get me wrong am a strong person (well I think I am), but am not made of stone, eventually these things do effect you and upset you am only human. Things such as anxiety, panic attacks, social exclusion, isolation and depression. The feeling that you are continuously on the outside looking in watching everyone else living their lives and having fun. Hotels I can’t stay at, beautiful rooms that I can’t stay in, holidays I can’t take, excursions I can’t go on, experiences I can’t have, Luxuries that aren’t accessible. The list goes on.

Then we talk about jobs. Another area that boils my piss. I want to work but am what you would class “unemployable” due to my health issues. Companies need to think about money and time and keeping backsides on seats and I get that. Another reason I started my own business. But I always feel guilty for not having on my CV or telling them (if it’s an agency) that am disabled and in a wheelchair before being put forward for an interview. It’s like turning up and shouting “surprise !!!” at them, the look on their faces is like the Christmas present you get of your least favourite aunty of the horrible jumper or your parents finding your porn stash…yea that look.

Discrimination I tick all the boxes aren’t I lucky?

I have often heard the word “discrimination” being bandied about, a lot, in the last ten to fifteen years. I never saw myself as being discriminated against though. Not when I was a child and I had to wear calipers, not as a young adult who had to wear surgical boots. It wasn’t until my last amputation which has ended up with me in a wheelchair due to other health issues, have I felt discriminated against.

Employers discriminate against me, travel companies, friends, strangers, hotels, events, venues, I could go on, and hell even inanimate objects discriminate me!

This is not just because am an amputee but because am in a wheelchair. In fact I seem to tick all the boxes when it comes to people to shame, hate or discriminate against. I am disabled I have no legs and am in a wheelchair, this means am lazy, scrounger, pulling a fast one, unable to hold a conversation, understand what is being said to me or indeed hear ! God forbid I have feelings, like sex, (yes I have been asked that) have romantic intentions, enjoy compliments (other than a pat on the head and a “good girl”, I sometimes feel like either panting and whining like a dog at this point or wheel myself over to a window and start licking it), let’s not forget the looks which are a mix of horror, morbid fascination and surprise when people find out that I am a wife, mother,

business woman running her own company or studying for a degree.

Then you need to add the weight. I must eat everything in sight, it’s my fault am this big, I have let myself go, am disgusting, no one could want to be with me, how can I be married or have children being this old. Now I see this kind of fat shaming all over the place. The latest being a picture going around on the internet of a girl dressed as Harley Quinn with the caption “she must have ate the squad” https://www.facebook.com/Deadpoolisasavage/?hc_ref=SEARCH Mate you’re a dick!! And while am at it https://www.facebook.com/keith.harris.3154284 you are a dick as well. What if we got hundreds of people to comment on a photo, a REAL photo of you and you had a big nose or spots or wore glasses or had freckles. Would you like to have this picture put around the internet with some derogatory comment so that anyone and everyone can have a pop at insulting you or discussing your size and whether or not you should or should not be cosplaying a character? Do people actually have any idea how this makes a person feel?Yes am calling them out on social media, whats good for goose is good for gander so they say. so if it is acceptable to fat shame some on on Facebook then it is acceptable to shame some one for being a dick. I myself am a lot bigger than the person they are insulting and I sometimes cosplay.

It can take a lot of courage and confidence to do some cosplays and I have in the past let my size and my disability dictate my costumes…no more. My weight is not from eating too much, it’s down to the amputation, not being mobile enough or being able to exercise the way I used to, medication am on that causes weight gain, and have six beautiful, highly intelligent children, IBS, Arthritis and Fibromyalgia. So no not pizza, or sweets, although am partial to crisps – but only salt and vinegar though.

Finally add my age. I am past…. Well… Pretty much everything according some people. Having fun, flirting, University, cosplaying, going to events, being a nerd just to name a few. Oh and we can’t forget the best one, the fact I have six kids. Obviously I only had them to scrounge off the tax payer and the state, because, you know I have NEVER EVER worked…yea so the last 31 years must have all been a dream then? Going to work with plasters on after major surgery to my feet, back at work three month after a double below knee amputation, signing on at the dole to look for work whilst waiting for a fitting for new legs, going to interviews with my stump boards on and no legs….I could go on but what’s the point.

Now if you add all of this together, you end up being treat like shit, ignored and feeling inside that you are unattractive, unappealing, waste of space and a sub human, non-sexualized as you don’t count.  

You are left wondering why you bother trying to live your life like everyone else or try to enjoy what others do. You give up trying to make an effort with your hair, makeup or clothes – why should you? No one cares, no one notices you are still treat less than anyone else who puts in less effort.  You are left wondering “ should I starve myself to try and force my body to lose weight? “ or “ who cares, why should I care what I eat any more instead of restricting myself and being good – sod it – am going to stuff my face, makes no difference any way does it? Still going to be seen and treat the same way.

You’re not seen as a person or a women you feel like you are seen as nothing more than a lump in a wheelchair, an inconvenience, someone to either feel sorry for or to ignore because you don’t know what to say are how to react ( for future reference, the same as you do to anybody else who isn’t in a chair !), hey I get it, who the hell would want to be reminded just how fragile life is, that this is something that could happen to anyone at any time on any day. No one wants that shit rubbed in their face now do they.

There are a lot of people banging on about equality in recognising disabilities as not all are visible. I get this, I really do people need to understand that the person using the blue badge may look perfectly healthy but they could just be having a good day, or have some health issue you are not aware about, so it is unfair to say they do not deserve that blue badge and parking space. But I often wonder if it’s not easier having an invisible illness or disability? No one knows unless you tell them. Until that point, or even maybe after that point as well with it not being visible and in their faces, people treat you no different. You’re a woman / man, attractive, a sexual being who likes compliments and being flirted with who is capable and people wouldn’t be surprised if you went to university or got married, had a job or started your own business.

You see, am so used to this crap that most days I can ignore it, but there are days I cannot. This weekend whilst working I could not. In your personal life being treat like that is bad enough, but when it is in your professional life. When you are looked down on and treat differently to all the other professionals who are there for the same reason just because you are in a wheelchair, with no legs. When, for the same reasons, you are blocked from interviews that have already been arranged, that you are made to feel that your business isn’t good enough, big enough or the people you write for are not important enough, that’s bad….real bad.

THE FAST AND THE FURIOUS

Nearly at the end of March already, who would believe it. I still maintain that this year will be my year for things to work and the last two month has just been a practice run. Guess we will have to wait and see.
As you are aware if you have been following my blog ( and if you haven't why not? get reading now!), This year has not had the best of starts. However three month in and things may be slightly starting to improve.

Caught up with University work and came out with a first for my Academic Mentor presentation which was great and after my personal development meeting, found out that I might not be as screwed as I thought I was with moving on to the final year. Although if all these health issues and my dads issues had not had to be dealt with what kind of grades would I be clearing? So it is with extreme caution that I apply for my final year of finance for my degree. But what comes next? For most students this would entail a masters or PHD or perhaps getting a job, but what about some one with chronic health issues such as myself? What do I do?Well I guess that is the question isn't it. Like so many others out there in the same situation (OK I admit there are people out there who do take the piss), I really want to work, even if its part time. Here is the problem, even part time I know there will be more times spent off then in and looking at my health issues most employers will take one look at me and will pass me over nor have the time, money or patience to put up with it.
So that leaves working for myself, but what as, how? The Psych Twins was supposed to be the start of that the whole, if Mohammad can't get to the mountain then the mountain will come to Mohammed thing, but with out grants/funding and being able to get contracts its all pie in the sky, a great service I keep getting told, that is greatly needed, but no money to do what we want with it, pay ourselves a wage or hire others.

So where dose that leave me? Well back at the beginning, on ESA, unemployable despite all my skills and training, just take a look at my CV (go on take a look you will find it on my LinkedIn Profile), despite the outward appearance of a withered, useless body ( I sometimes see myself as a female "Jabba The Hut" ) there is a mine of pure knowledge, skill and enthusiasm just waiting to be tapped into. This then leads to the "what's it all for then?" phase. The point at which you relaise that you are of no use, not even to yourself. You need help at home, help to go into education and help to hold down a job (if you could actually get some one to give you a chance) and the government is slowly tearing that all away from you any way.
This then moves into the "isolation" phase. As some one who has numerous illnesses/ health issues, going out socially is not a thing. Even if I had any one who would offer me to go out socially there is the accessibility of the venue and how good or bad am feeling on the day. ( All the offers of being invited places, even by family and friends dropped off after it became apparent that to invites some one out who has to use a wheelchair 90% of the time is just to darn pesky to organize. Especially if it means that one of you have to be responsible for helping said person and good god you might have to change the venue/pub route/restaurant to make sure its accessible etc etc ...you get the picture). So if you take going to university away, I leave the house once a week with my husband...maybe to look around the shops and any drs and hospital appointments. What does that mean realistically? If am lucky I will get out once a week maybe once every two/three weeks. WOW exciting life !

This then leads into the final stage..depression. yep. What more can I say about his phase, well nothing really, its all been said before. You can't see anyway out. Nothing is going to get any better, because there is nothing you can do to make it any better. No diet, exercise regime or will power is going to change those illnesses so you can go out to work, therefore get out more socially, have money to enjoy life, get  mortgage, move up in the world etc etc. No way of being a good little citizen just like the government want you to be. So you are labeled a scrounger, a waste of space, useless and society look down on you, and the government? well they just keep taking benefits away from you making it harder and harder to function on a day to day base, telling you to "get a job" "loose weight" "exercise" "this is how to improve your life and your credit"..we know! but we can't can we no one will let us.

Money wise, am lucky my husband runs his own business which ticks along for us, so things don't effect me as much as some people I know  - disabled and non disabled. I would love to go back to work, hold down a job doing something I would enjoy, bringing home a wage and getting off benefits. I dream of getting  a mortgage and owning my own house, done out to my specification no expense spared, holiday every year never mind twice a year instead of saving for 2 year to go away for  2 weeks (meaning no treats for the kids, no weekend breaks as a couple, no date nights, no family days out, no new clothes , going no where during the summer holidays etc etc).... and yes for those out there who follow my profile on Facebook I save to go to Florida and am well aware there are people who cant afford a weekend away, I did say am lucky.......to have more of a social life with my family and  friends rather then wondering if am getting out the house for an hour or two in the next 14 days.

Who knows maybe things will turn around. Maybe funding will come in and I can finally get The Psych Twins off the ground the way I want too and make a wage that way. Maybe my health will improve and I will get a job or there is some employer out there who will let me freelance as a writer or something and come in when I can for a wage.

Maybe I will become a tv personality and be on political shows and news program or have my own show. Maybe I will become a famous author. Maybe I will get the acting offer I cant refuse because of my unique physique as an amputee. and matronly and northern..yea OK the least of the lot to come true. All I do know is that I will keep on trying, wishing and dreaming. Oh and am getting an electric wheelchair ! so bright side I get to any future Film and Comic Conventions I can play a Darlek....

......................Que Dr Who theme music.........

IS THIS THE LONGEST AND WORST JANUARY EVER?

Being an amputee one of the biggest issues I have apart from not having access to places is the weather. I wasn't steady on my feet before but now that I have what effectively feel like stilts, its a whole lot worse.

The main issues are rain ( living in the UK is 80% of the time), ice/frost and snow. Apart from the issues of the cold causing problems with the joints due to other health issues I have, this weather turns me in to a virtual recluse or risking a serious fall. Because I do not have a flexible foot or ankle and the prosthetic comes up to my knee cap, it makes balance and bending in them very difficult.
The weather since Christmas has been all over the place. High winds that caused issues with balance and asthma for me, torrential rain which meant a huge chance of slipping every time I went in doors, snow which means no outside at all, and now the media is telling us that it is all to start again with server snow due to it the UK.

As if already having a list as long as your arm with health issues isn't enough it looks like more will be added to it this year as mentioned in the last blog. I am struggling with university already and as well as missing  a second deadline now,  we have only been back a week and have already missed two days being in for lectures, with more to come due to all the appointment's I have coming my way. Dad is having money going out of his account with nothing to account for it as due to the dementia he is forgetting to pay his bills. this is going to mean more appointment's with social services ( for what good it will do).

So as well as struggling with my own demons (my depression, which is not uncommon for people with serious health issues or amputations to battle with), my health issues and university but I have my dads ill health to deal with and lack of control of pain. I can't speak for other people who are disabled but the hardest thing I  am finding at the moment is trying to do what every one else takes for granted, sometimes just keeping my head above water is a struggle. Being disabled to me means having to work harder to be "normal" like every one else. Things I used to take for granted and most of you still more then likely do, can be the biggest struggle for me.

Just getting up in the morning is a battle. Moving to sit up and get out of bed can be so painful it makes you cry. Getting ready can be a struggle so you need someone to help getting things on or off. Don't even talk to me about the shower ! The act of showering and the pressure of the water on my skin can sometimes be so painful that just having the show can set off a major fibro flare. Not to mention dropping stuff on the floor or things out of reach you just cant reach as you have no balance to do so ( weebles wobble but they dont fall down....unless you have no legs on and reach for something and go  face first into the floor ).  Then we should talk about the holding cups, forks and dropping everything, pins and needles in the hands, not being able to pick things up......the list goes on and I still push myself to attend appointments, university, sort out my dad and working on The Psych Twins. Can't wait for the new additions from the things am waiting to hear about.( thats sarcasm by the way, just in case you missed it).

These are what I suffer from at the moment :
amputee with phantom limb pains and nerve damage
Fibromyalgia
sleep aneapa
chronic fatigue syndrome
Arthritis - rheumatoid and osteo
rynalds
circulation problems
IBS
depression
and waiting on news about heart and cancer......I think thats everything, comes to something when you cant remember everything you have been labeled with.

With everything going on with me and my family, the amount of famous people who are loved by society dying, the news is full of death, disasters and the government screwing us over even more,but trying to stay positive so looking forward to what is to come this year.

The Psych Twins will be attending Walker Stalker in February to do reviews for access, Newcastle comic con reviewing March, Hero conventions in Edinburgh in April reviewing access, Asylum 16 and City of Heros 2 promoting ourselves in May, Metro unleashed promoting ourselves in June and Screen Con in Tynemouth promoting ourselves in July and as long as there are no more financial disasters the main thing am looking forward to is my  three week holiday to Florida in the USA.

so even though reading through the list of aliments I have makes me wonder how I function or even get up at all, I still have things to look forward to. Now if I could just work out how to stay upright in the snow.....

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.

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)

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.)

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.