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.

www.jcdtalks.com
www.jcdisabilityconsultant.com
Facebook: The Psych Twins/JC Disability Talks

INSPIRATION

So I have read a lot lately about people with disabilities being other people’s inspiration.  However, this seems to be getting a lot of disabled peoples backs up. There are lots of comments along the lines of how degrading it is, how we are inspiring to others by just living our lives or patronizing it is to be told how “inspiring” they are.

Well for what it’s worth, here is my opinion on it.

I feel quite good about being some ones inspiration to be honest. If what I manage to do can help someone else, motivate them to achieve something or just to keep going. Then good. Am glad. Able bodied or not, I am happy if I guilt you into not complaining or getting up off your arse to do something. I feel elated and ecstatic if I can make just one person say “if she can do it then so can I “.

Disabilities come in different forms, some we are born with and some happen due to accidents and illness, but how ever or whatever has happened to us, it changes our lives in so many ways. I am not afraid to admit that even though I was born with a disability, unless it involved standing for long periods or walking a distance, I never really saw myself as disabled as it did not interfere with my day to day life (unless you count not being able to wear shoes from a shoe shop as my shoes had to be made by the hospital for me).

Since the last amputation however, I now consider myself disabled, as not only does it impact on my day to day living it has a major impact in all areas of my life and everything and anything I want to do. I do struggle to do things like walk around the house, make a cuppa tea, cook a meal, showering, stairs are a complete right off, nights out, shopping, hell getting into and around some shops and premises can be an Olympic sport in itself!

So, yes, if me managing to live my life, getting through the day and doing normal day to day things without help, if holding down a job or gaining a university degree when the odds are stacked against me, which makes things more difficult to do what other people take for granted, helps other people who are disabled to believe in themselves or someone who is not disabled feel more motivated to do something then that makes me happy.

A ROSE BY ANY OTHER NAME

****WARNING IF YOU ARE OVER SENSITIVE AND VERY PC YOU MAY FIND THIS A BIT CONTROVERSIAL*******

I have seen a lot of posts by people lately regarding how to address some one who is disabled or what to say /not say to them

 To be honest I find it all a bit silly

 Am not the most Politically correct person out there but as far as am concerned calling me by my name is fine. Honestly I will even answer to "thingy" or "you" even "Fred" just try not to use Jennifer too much as when I get my full name it usual means am in trouble.

I get it, some people feel that being called "wheelchair bound" "disabled" or "handicapped" (too be honest although am not fussed I try to refrain from the last one as it seems a bit degrading). They feel that these terms and others define them or that they are being defined by their disability. I am an amputee because I have had an amputation, but that does not define who I am. Am lots of things (play nice now), am a mother, wife, daughter, student, blogger, Therapist as well. I am however bound to my wheelchair to some degree, without my wheelchair I would not get very far at all or get out so the term "wheelchair bound" is accurate as far as am concerned. Disabled to me is accurate as well there are lots of things I can not do and I am not abled bodied either.

why do people get so bent out of shape by these terms and the use of them?

I have a theory ( and no its not about bunnies! and if you get that reference high five.).

From most (not all and am by no means taring every one with the same brush here), of the articles I have read there seems to be three types of people that find this terminology offensive:

"The do gooder" - People who have never suffered any kind of disability or health concern in their life but think they have the right to voice an opinion on this subject as an expert.

"The world owes me" - People,  who for what ever reason,  have become more and more bitter over time due to their disability or illness. They feel, rightly or wrongly,what has happened/wrong  to/ with them that it is every bodies fault ( I get this to some degree, its not easy to keep a positive outlook going every single day when you feel so useless and / or limited by whats wrong and the world will not accept you for you and most activities or places are not accessible, every one has their off days). But really? The world doesn't owe you jack squat mate! Yes maybe a helping hand now and then to do things or access places.  Use what you have to your advantage, make the most of it and start living because before you know it life has just passed you by.

"My life is over or why cant this have happened  to some one else"  -  People who have ended up with an illness or becoming disabled later in life through no fault of their own. Again I understand. One minute being healthy and able to do any thing or go any where, your future looking bright and shinny and the world at your feet, to within 24 hours having all this ripped away from you. It is a hard pill to swallow. It is also a bloody hard thing to get used to and come to terms with -  fighting pain, depression, friends walking away because they don't know how to react or cope, people staring, suddenly having limits put on as to what you can do, places you can go or even things you can wear.  ( I went through all of this for nearly a year and a half then decided I had enough. Now I wear what I want, I pimp my prosthesis and rock Darth Vader on one of them, wear shoes that make people stare and generally make the world bend to me.) I understand that this takes time , but some people just never adjust, adapt and learn to live with it they are too busy lamenting what they have lost.

How about instead of trying to define what we should and should not be called or what "boxes" "abled" bodied people put disabled people in, or in fact whether or not people should or should not help us with bags or opening bloody doors for us , why don't we just agree that we are just people with a difference? What terminology is used really doesn't matter does it? not unless it is meant in a bullying, nasty, creepy kind of demoralizing way. Unless some one is deliberately putting you down you define who you are, you put the limits on yourself its not a "us" and "them" thing, or at least it shouldn't be. The government have already tried to turn society against us people do not need to be helping them to do that. The next time some one asks what you like to be called make a joke or light of it , it an only offend if you choose to let it. The next time some one offers you help be grateful and smile, the next time some one opens a door for you say thank you you ungrateful git. The barriers are there and they will never go if people start to make other people feel uncomfortable to approach or help, terrified to say anything to us or engage with us or even invite us some where in case they offend, upset or seen to discriminate.

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.....

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

DARK DAYS AND THE LIGHT AT THE END OF THE TUNNEL KEEPS MOVING AWAY..BUT HOPEFULLY NOT FOR MUCH LONGER

So we are now half way through the summer holidays and my insucruities are starting to kick in every so often.

I am having days of feeling very down, criticizing myself for not being able to do things or lose weight. Disgust crosses my mind on those days when faced with my reflection and the day seems to be darker all of a sudden. There is the whole "need to be out get me out" cabin fever days but more the " I dont want to leave the bedroom never mind the house " kind of days. I can't be the only one who thinks that maybe having their amputation might have been the worst thing they did as it has took their life away. Watching the kids going out and socializing during the summer,friends being out and about and even the hubby being out most days doing his own thing at the gym and being pestered to go out socially, it hammers home more then ever just how isolated I am due to the wheelchair and the amputation.
Friends have drifted away, even the ones I thought would be around for life. With the end of University seems to have come the end of my social/outside life. I find my self comparing myself to every one and find myself lacking in all departments. Just as I seem to feel better and because these days are far and few between there does seem to be light at the end of the tunnel. Although some days I wonder if the goal posts are being moved on me or just the light at the end of tunnel is the one moving. However I remember the self help techniques from my CBT which help when these days attack. Things like slow breathing, mind over matter and my mantra when meditating of convincing my self that I can do this, I am worth it. These are things that I will keep battling with and will battle with as am not one for quitting on anything

As if having 4 kids ranging from 6-11, a 16 year old on and off stroppy teenager and a 21 year old isn't enough to keep me on my toes (excuse the pun), then I in my infinite wisdom decided to take on more things.
The Psych Twins are moving all steam ahead which is great and we have had the promotion with the young carers and the cosplayers for the event in October, but still no word on when it will be in the papers.

The Psych Twins where also invited to a networking event at The Stadium of Light in Sunderland for the start of the new season. This was a great opportunity to put our name out there and make connections for future charity events and fundraising as well as what we do. We have also completed the paper work for registering as a charity so hoping to get that  submitted with in the next couple of weeks. We now have business cards which is all very exciting..well to me it is.
And as if this is not enough I have also started a CBT Diploma online which am hoping to complete before returning to University in the middle of September. Once completed and as long as I pass then I will be able to practice in CBT which will be good as well. And there was a great surprise waiting in my in box yesterday as well, The Amputee Diaries have been given a press pass for Film and Comic Con Glasgow next weekend. This means that I will be able to go and do a full review of the venue, see what Showmasters put in place for disabled people and families as well as interviewing staff and stars on their opinions and thoughts on disability and events like these.

Then I find out on top of all of this that my dad has been diagnosed with dementia. With my health being the way it is I am unable to help in his care which means everything is left to my older sister to take care of. However we are not sure that it is dementia as his bloods have come back inconclusive and an x ray has shown a large mass on his lungs/ chest. Not expecting good news from that one.

As they say it never rains but it pours. The light at the end of this dark tunnel will be hopefully coming in to focus and stop moving away from me. Passing Uni was a relief and a blessing and am really looking forward to getting back. It will be good not just for the interaction and leaving the house but also to be just Jen and not mam. Lets hope things are slowly going to improve. Watch this space.

If any thing in this blog effects you then please get in touch if you wish to talk or we can help in any way.

The Psych Twins Websitethepsychtwins.bravesites.com

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

Event page   https://www.facebook.com/events/417935758373799/

Tickets http://www.jumblebee.co.uk/ticket/trvDZTEUem/detail/id/508

MOVING FORWARD WHILST LOOKING BACK

Last week was all busy, busy, busy.
The Pysch Twins are going bigger and better each passing day with more and more support from local business. Which is wonderful. The results where posted of our final results for this year at University and am very pleased to announce that I received a resounding pass and proceed onto the 2nd year of campus. This is in effect will be the third year of my extended 4 year degree.
Jo and I have also been asked to do an hour slot talking to the new students in September for the level zero course during their introduction week which is great news and a fantastic chance to get some experience. On top of this we where also asked to take part in the marketing for Sunderland college. We had a lot of fun acting out for the photographer so looking forward to the results of that.

On other good news I was awarded my PIP (Personal Independent Payment). For those of you who do not know what that is it is a new benefit that is taking over from DLA ( Disability living allowance). It has been quite a controversial move by the government to replace the DLA with PIP as the rules governing the award have been tightened. This means that there are now more and more vulnerable  people who need this money to get around in the form of a car on the mobility scheme, who are left without the money to aid in their day to day routine , getting out the house or being able to work. Along with cutting the Independent Living fund , reducing the amount of money available to support disabled people whilst in work and the rumors of student finance and help for disabled students being cut or abolished, more and more people with disabilities are finding it increasingly hard to to get a job or keep it.

You have heard of the undateable's? Well met the unemployable's

That's people like me and people like my colleague. I have so many health issues that I could more then likely fill a A4 sheet with it. What that means is that I may end up having days, like this weekend where I am in so much pain I can't sleep much and barely move. In a normal five day forty hour week this would cause issues and would mean time off work on a regular biases. This doesn't mean that I am past my best before date, I still feel I have a lot to still give . Experience, skills and knowledge.But then you add on the fact that as soon as some one sees you as an amputee in a wheelchair, never mind telling them about the other health issues and medication, they immediately write you off.
Then there is people like my colleague. She has two children one with ADHD and one with ASD. Needing to be available at all times for her children just in case their was a phone call from one of the schools . Then you need to look at the mental health issues we both deal with. Depression, stress, anxiety and panic attacks. Sometimes so debilitating that you can not leave the house. There are a million people out there with the same kind of issues that still feel they have something to give , still want to work.

I miss the days of not needing anything stronger then a paracetamol for a bad head. Being be able to sleep with out a machine to make sure I don't stop breathing. To pick a pen up and write without losing the feeling in my fingers and hands. To not drop pans because my grip goes. This is just some of the joys of Fibromyalgia, apparently brought on by trauma from the two amputations and lots and lots of other operations I had gone through.

Do I regret having my amputations? The first one,,no it give me a new lease of life but then things went wrong and I ended up with the second lot. Do I regret that? .......good question. Yes sometimes, these days more yes then no.There are so many things I miss not having legs/feet. The feel of a carpet, walking on the beach feeling the sand between my toes, being able to walk into the sea, swimming with out aids and hoists. Just anything straight forward like going out and not thinking if there is stairs or disabled toilets. Funny as it sounds, being able to sit where ever the hell I wanted.

I digress. That story is for another time, another blog.  The fact that we want to work is why we have started The Psych Twins. This is a service, non profit and no staff...yet.  we started up The Psych Twins to raise money for local North East charities who get over looked. We are currently working with the Carers Center in Sunderland to raise funds for them by holding a Halloween Monster Masquerade Ball at the Stadium of Light in October.

The initial expense is coming out of mine and Joanne's pockets, which is scary,  so hopefully we will sell all the tickets . Once our costs have been covered we are hoping to raise in the region of £2000 plus for them.

 What we would like to do eventually, would be to open a Center in Sunderland that would offer help, advice and counselling/ therapy free for any one and their families , adults or children in the North East  who are disabled , whether it is a mental health issue, physical disability, amputee, wheelchair user, ASD, ADHD etc. We want to offer  a drop in center for advice such as  whats on in the area that is suitable for them, help that is available that they might not know about or just to  pick up leaflets or application forms for  services or help such as the Cinema card, attending a festival or looking at starting work or going to University. There is help out there but not very easy to find and the only reason I know is the amount of man hours researching it. But we also want to offer kids activities free such as support groups for parents with children who have ADHD or ASD for example where they can come and met and talk to people in the same situation while the children have fun doing activities or party or a sensory room. Support groups for amputees etc again where they can get together with others who are in the same situation and can support each other and not feel isolated. Also offer help applying for benefits etc but also offering counselling/ therapy for those people who need that extra one on one support. 

Its a big dream but we are determined to make it a reality. We want to hold drop in sessions at various community centers which we will fund with bake sales and coffee mornings, then the big push is getting premises to open the center.  what we would like is to get funding in order for us to take on the staff with us that we are going to need to run it and operate it as a business but keeping it a free service for people to access. This would be done by (hopefully) grants, fundraising etc. We want to hire staff who under normal circumstances would be classed as un employable by most people due to their health issues and disabilities, time they might need off. People  who have the skills and knowledge and still want to work but are often looked over due to this.

My life is a bit of an open book lol but I hope that if just one person can see that their life is not over just because of their disability or it gives one person the courage to try something they never thought they could do , or one parent the comfort knowing that every thing will just be fine then Its been a success.

Depending how successful this years ball is, we would like to hold the ball  every Halloween for charity. With any luck getting bigger and better !

THE DARK SIDE OF LIFE

There is a side to life that most people go through but rarely want to discus and that's depression and anxiety. Its like the elephant in the room. Being disabled from birth I have found that I bounced back easier then I do these days from it.

I am not saying that disabled people get this more or worse then anyone else but I often find myself wondering how much it dominates other amputees lives. Losing a limb is like nothing else health wise I have been through and grieving is definitely part of that process. Its took me 4 year to be objective and admit that having the second amputation really screwed me up mentally.

At first I thought it would be no different to going through my first amputation when my feet where removed. Couldn't understand why people made a big deal about grieving for the limb and how they found it hard to get past it, not until I had the below knee, then it all made sense. I was so not prepared for what was about to happen to me or how I would feel afterwards.

Therapy and advice was non existing for the second amputation. For the feet I was introduced to a guy who had lost his leg below the knee from an accident at work, nothing like me having my feet removed through necessity. This time though there was nothing. I was not given support before I went in, never mind after it, no one to talk to, I wasn't even put in touch with any one who had been through this for the first time never mind a second time. But hey I would be fine ..right? wrong!
Although the operation went well I found it hard to bring myself to look at the bandages. This just got worse when it was time to remove them. I felt physically sick every time I looked at them. I wouldn't look in a full length mirror nor did I want my photo taken. I wouldn't go out, my friends stopped coming around as often (not sure if it was because of how I was acting or because they did not know how to handle the fact I had no lower legs), I stopped getting invited to go places, nights out and family events as I guess it became more "complicated" to accommodate me or because people did not want a constant reminder of their own mortality. Maybe it was because it would be more trouble then it was worth or they assumed because my legs where gone so had my likes, interests and personality.

I became agoraphobic and having panic attacks at the thought of going out never mind to a new place, not sleeping, moving between binge eating and not eating at all, sleeping all the time and up all night not to mention the crying and mood swings. My weight ballooned and family where non existent for support or help.My mother was dead and my husbands mother helped as much as she could up until her death but when she died we where left afloat on our own and I became more dependent on my two oldest kids and my husband.

I was discharged from hospital with no help put in place. We had to organise the wheelchair our selves, as well as OT to look at adaptions. I had to apply twice and wait over a year to have the bathroom adapted so I could use a toilet instead of a commode and a shower instead of having a bed bath.
Trying times that luckily made me and my husbands marriage stronger if anything and my relationship with my children better. I ended up on anti depressants and having CBT therapy, which I had to do the research for and implement myself.  That is when my life turned around. I found the tools to manage my anxiety, signed up to University and have never looked back !

But not everyone is as strong as me, not everyone has a loving husband and kids who understand and this is when depression can swallow you up like a black whole, never ending and not forgiving.

That's when I thought "is this the same for everyone who goes through an amputation?", "what about people with other disabilities? do they have anything in place".I went back to work 3 month after my amputation, desperate to get back to a "normal" life as quick as possible, this was when things really went down hill ! The medication I was on started having effects on my judgement and I left the job I had as I felt uncomfortable, out of place and discriminated against. Then came the trying to get another job. Not great for a confidence boost, you would be amazed at how many employers will not higher you on the grounds of not having the facility's to cater for some one like me eg an amputee using a wheelchair.

I did find another job but then my other health issues started to raise their ugly heads. My body was in shock and my nervous system was suffering from trauma and working was no longer an option,  I felt at one point that society had basically washed it's hands of me and I no longer had a purpose in life. Yes I had no legs and was in a wheelchair, alright this ended up causing other health issues for me, but surely this can't be it?? There must be something I can do? I can't just spend all day every day on meds that spaced me out watching the days merge into one and time slipping away.

But how many others just accept this? Believe the crap that society feeds them? thinking that because of this their life is over?  This is wrong !! There should be something in place to support and advice people before AND after the operation. People with disabilities should have access to free counselling to help them if and when needed , some one to point them in the right directions for services, help and advice. This is one of the reasons I have started the Psych Twins.

If you are suffering from depression and think whats the point? you are not alone.  You are not the first and wont be the last to go through this, to feel the way you do. You're not "abnormal" for feeling the way you do and do not let anyone make you think you are. Your life is not over!!

Yes am better these days then I was but I still suffer bad days as well as good. There are days when I wonder why I bother and what is the point of getting out of bed. Days when I think to myself " why struggle on painkillers that take the edge off when you can take stronger ones and just let the pain and days/time slip away". I still have times when I cry for no reason or something some one says or does that normally would not bother me makes me despair or break down. Anxiety, stress and panic attacks are still my constant companion but I now have the tools that help, sometimes they still over whelm me but its better then it was. And I still do not like having my photo taken in my wheelchair, but am working on that one lol.

The point of this story is you might ask. I guess the point is, you are not alone, this is normal, don't give up and keep fighting. You are worth it ! If you need to talk or have questions please feel free to contact me.

Link to Facebook
https://www.facebook.com/psychtwinsfundraising?ref=tn_tnmn

Link to Twitter
https://twitter.com/psychtwins

Link to Website
thepsychtwins.bravesites.com

....AND NOW WE WAIT

Another week has gone by and another busy time in my life. For some one who is unable to work it sure seems like at times my life is non stop and there is not enough days in the week. However expecting things to calm down now due to University finishing, although there is still the October event to try and organise.

Final exam over with so now the waiting begins for the results. Seems that this month is going to be all about waiting. Did find out that I passed my media piece for Psychology in the media so it looks like that module is in the bag. We do not find out about the others till the beginning of July. Was a bit disappointed with how the last exam was handled to be honest. As part of the help from University I was supposed to be put in a room on my own with my own invigilator, flash drive. PC use, my support worker to scribe if necessary and extra time. Yes I had my own Pc and invigilator but was put in a room with 4 other people. As you may imagine this made it difficult to scribe to my support worker if needed as I would disturb others and they would hear my answers ! Yes I was given my own invigilator but this seemed pointless as they had one in as well for the other 4 people. The multiple choice questions they wanted us to write the answers down which negated the point of having the PC as typing is a lot easier then hand writing for me. To top it all off I had to point out to the invigilator that I qualified for the extra time. Fingers crossed though that this has not impacted on my results. Also found out that not only can I take books out for 4 weeks if they are a week loan but if I take them in to the campus to be renewed instead of on line then instead of renewal for one week I get it for another 4 weeks. Handy to know for next year.
With the summer holidays now here for me this has enabled me to concentrate more on my reading for pleasure and building up the Psych Twins. So watch this space. Although it is so frustrating trying  to get celebs to attend this event but will keep being a grade A stalker in order to get the attention this cause needs.

Tylers birthday went really well. Tyler as I may have mentioned before has ASD and it is mainly a sensory thing. We got a friend of ours to make him a plant vs zombie cake and his reaction was priceless and so unexpected. He sobbed in my arms with happiness! For those people who do not know anything about children with ASD, showing signs of emotion is very rare and for some never happens. So now you can see why this is such a big thing ! Put the cake on twitter and was pleasantly surprised to get responses from POPCAP the game creators and the artists of the game wishing Tyler a happy birthday

. To say this made is day more then anything was an understatement.

Had some fun being a poster child for the college. Went off to Bede College on Tuesday to do a photo shoot and interview with their marketing department. Looking forward to see if they use any of the material. As long as I don't end up on the back of a bus.

The big day came for the PIP review with ATOS. The woman who we saw was nice and she was a general nurse, fair enough of hematology but at least she was a nurse. After answering a lot of questions, some of which where quite degrading to answer and de moralizing, and having to explain in more detail what I had put on my form she finished with asking me a very bizarre question . If I had any pets? Still trying to work out how this is relevant . Answers / suggestions would be appreciated. After being told on the letter that I needed to take all my meds and aids with me (which I could not take all of them btw), Was told that she did not need to see them, Nothing was asked of night time care. She wanted to know if I could make a meal for my self and use the microwave, but not interested that it could only be done if some one else brought the stuff out of the fridge/freezer or cupboards and then carried things through for me or that if using the microwave I could put something in but not take it out again, and again needed some one else to bring the stuff from the fridge/freezer for me. After about an hour of questions she then asked me to move my arms in various ways and grip with my hands. Then it was over. Now I have about 8 weeks to wait to find out if I get to keep my DLA or not. Not that that is going to stress me out AT ALL.

So what next? Well try and relax. HA. Work on The Psych Twins website some more and getting things organised for his event in October. Read for pleasure, although I will be making a head start on next years university reading after I get my results and know I have passed.

 And keep working on my dreams. These are passing this degree, doing a counselling course then off to Teeside to study for my Doctorate in Psychology and counselling for practicing CBT.

I like to dream big.

GETTING OLD

Another busy couple of weeks. The Psych Twins website is now up and running and we are adding to it all the time so you might want to take a look. psychtwins.bravesites.com and you can also find us on Facebook and twitter.

It was my birthday on the 21st ( don't ask the age), and was spoilt rotten lots of lovely presents and both dinner and tea bought for me. On the downside ended up in the emergency dentist to be told that I have at least one abscess on my broken back tooth. The pain was agony. Three days of no sleep and constant pain left me losing time and no chance to revise for my last exam on Wednesday. But sitting in the dentist it came to mind how it would work regarding me being in a wheelchair? Once in the dentists surgery he didn't even ask if I could get out of the wheelchair he just told me to get in the dentist chair. No help, no we can work round this nothing. What would have happened if I had said that I couldn't?Another issue I came across was accessibility to the premises. Most of the emergency dentists that where recommended to me by the 111 service all had stairs up into or down into a sub level business with no disability entrance.There was also no access to bathroom or surgery.
I ended up leaving with  a prescription for antibiotics and told to have the tooth removed. No I am having the same issue trying to find a dentist to register with who can fit me in sooner rather then later that has access to the building.

Better news on my birthday was the fact that Tyler had his review at hospital over his legs. About a year ago he was diagnosed with Tibia Torshin. We where told that he would be given innersoles to try and help correct the condition but if not then it could result in having to have both his legs broken, Well after his review we where told that the surgeon would rather wait until Tyler is old enough to make his own decisions about whether or not he wanted correction surgery . It still may correct itself, but it is not a genetic throwback from my Talipes which was what I was really worried about. It turns out that it is a condition that most sprinters suffer from. It was at this point the penny dropped and we knew  that it was part of Tylers constant running backwards and forwards he does on a night time due to his ASD.

Saturday although in a haze of pain and painkillers it was a special day. Annabelle's prom. She went to the spa to have her nails and hair done then a good friend of mine did us a huge favor and traveled over to the house to professionally do her make up. She looked so Grown up !!!
She wore the dress that we got her last year from Florida and her hairband we bought her from the Chinese pavilion at Epcot in Disney. finished off with black shoes and handbag and one of my costume jewelry necklaces and she looked amazing. Although am not too sure I like the idea of my little girl being all grown up. David dropped her off and he was like a proud peacock showing off his beautiful daughter, bragging to anyone who would listen.

One of the many things I miss due to my health conditions are the little things the most. Like taking my daughters shopping or having mother daughter meals and trips away, walking on the beach feeling the sand under my feet or going in the sea. That is just to name a few.I ended up back at the doctors as well due to the Tramadol and Paracetamol no longer having an effect on the pain. I have ended up with also being put on Nefopam, a painkiller am not familiar with on top of the rest to see if that helps..it doesn't. The doctors told me that I am going to have to face up to the hard truth, that sooner rather then later am going to end up on the harder drugs for the pain. Things like the Oxycontin, Zoramorph and Oramorph. I will keep on going and fighting until I no longer can before I move onto these drugs full time. Because once I do any dreams of trying to work are gone.
I am having an ultra sound done on my armpit as well as a lump has been found and unfortunately there is a terrible history of Cancer amongst the females on my mothers side. Both my sister and niece have been diagnosed with cancer of the cervix and breast and now my niece is awaiting news about a shadow that has been found on her bladder. As usual still waiting for an ultra sound on the stumps but my appointment for my neck and back is through for the 24th of June, not that I need to be told I have anything else wrong with me !!

To end on a positive note school is out! I have completed my final exam of this year and have now broke up from University for the summer. Four and a half month of doing what I want..kind of. Pleased to say I passed my last media presentation so fingers crossed it will be a pass and proceed in July.

LINKS THAT MIGHT BE HELPFUL:

http://bluebirdcare.ie/2015/05/15/transportation-for-older-people-and-disabled-drivers/

http://www.hypnotherapy-directory.org.uk/


Any help or questions please feel free to contact me here, The Psychtwins on Facebook  https://www.facebook.com/psychtwinsfundraising?ref=tn_tnmn

or at through the website link above.

A DAY OF RECKONING IS COMING

Still have no trainer to get me into shape for the Great North Run in 2016 so it looks like am going to be kicking my own arse for it.
Went to get weighed so I could have an idea of my starting weight . SO not happy! 21st 11lb. What happened? So have bought Asdas version of Slim Fast . finding it difficult but persevering. My snacking has stopped so have the biscuits and coffees ,but yes you guessed it , not so much the crisps which are my nemesis. Not crisps really these Fish n Chip biscuit things, really bad addiction to them but managed to cut down to only having them twice this week instead of every day so YEAH go me!
Re started my physio in a morning as well as light weights for my arms ( apparently exercise is supposed to help Fibro....still waiting for that one to kick in), sit to stands from the wheelchair to strengthen my legs and back. Had my first go on the treadmill as well. Worried I was going to fall flat  on my face but it went OK so starting that from next week.

So what has this last week brought me? lots not all good either. Took part in a study for a student at Oxford University which was really interesting and glad I did that. I have had an article published as a personal story for this blog in Disability Today which is an online site and there is the possibility of talking to new students in the new term taking on the level 0 of Psychology. this is to share my experience of the course, explain what happens at University once you get there, such as volunteering, society's and what to expect as well as doing Q&A sessions with them.
Mikey came home from Stafford University last Tuesday which was great.The kids are really happy to have him home as are me and his dad. Bless at the moment he is relegated to the couch as we have no room for him but when the summer holidays start anna is giving up her room for a while for him. Tylers SATS went well and he quite enjoyed them..strange boy and Anna has her prom this weekend so handbag and shoe buying was on the cards this week as well as booking the salon for her hair and nails.

Now the not so good news. Got a letter back from DWP and I have an assessment with ATOS on the 3rd of June. This should be interesting. They have asked for all my tablets and aids.... no room in the car for everything I need for help on a day to day basis and even if there was the assessment room would not be big enough. Worried about attending, people keep telling me that they should be no reason why I would lose it but hey this is the DWP who can say what they are going to do. I have heard stories of people who have lost the money and worse then me.Losing it would have a huge negative impact on my life and make me more of a recluse then I am already. At the moment other then Uni and drs/hospital appointments and possibly one day a week in the town I do not go out. I socialize....well ....I don't really. People tend not to ask me too and when David and I do get to go out to the pictures it is once in a blue moon to be honest.
Ended up at the Doctors as the Tramadol is no longer working and have been given more tablets to take along side the paracetamol and the Tramadol which are Nefopam 30mg. Have to start off on one tablet a day then slowly increase until am on 3 a day. So far experienced  a bad stomach, nausea and a slight euphoric feeling but no help with the pain. The doctor has told me that eventually, whether I want to or not , I will have to go onto the hard core tablets full time. That means not being able to function during the day. Not sure what impact this will have on my plans but hopefully I can stay off them long enough to carry out what I want to do.

Also having to have a blood test and an ultra sound on my underarm as they may be a lump. The worrying thing is that Cancer is big in our family my sister and niece have both been affected in various ways including breast and cervix cancer and my mother died of cancer of the stomach. Better to be safe then sorry I suppose but it is still worrying times. Also having to get in touch with the Genetics center at Newcastle to see if am predisposed to it. Still awaiting an ultra sound on my stumps about narrowing veins and hospital appointment to have my neck, shoulders and back checked out . Not good times.
could not talk to the doctor about every thing I need to as my anxiety and depression my be on the raise again but I had not made a double appointment and was told I would have to go back another time to discuss them. On top of all of this my dad has to have an MRI on Monday as he may have a form of dementia. The thing is he is now getting abusive to my older sister Maureen, but does not even know who I am...don't know which is worse to be honest. How would you feel if you mother was dead and your father did not know who you where and just thought you where some strange women?

To round the week off went into town on Wednesday and when in HMV was treat like a child by the sales assistant. I was so embarrassed that I honestly did not know what to say. I thought I had gotten over the whole self conscious thing and feeling insecure, lack of self confidence,but the way this woman treat me has really made me feel that way again, Its surprising how one little thing done or said that might not have been meant as anything in particular, or not even a conscious thing by the person, can have such a huge negative impact on some one.

However lets end this on a good point. Showmasters got back to me and they have refunded Davids tickets as they do carers passes and have sent me an email with all the information on  that will help me with getting around Comic Con in London ! So much help am over the moon and it has really stopped me stressing about going out of my comfort zone. Now am just looking forward to it. Still not sure to cos-play or what as so any thoughts on this would be great.

Don't forget if you want to talk to me, ask a question, need advice or some one to talk to there are several ways to get in touch. All you need to do is copy and past the link into your browser or click on it.

My facebook page  https://www.facebook.com/theamputeediaries

The Psych Twins Facebook  please follow us on Facebook

https://twitter.com/greebo89  My twitter

https://twitter.com/psychtwins The Psych Twins twitter please follow

For news and help check out our website  http://thepsychtwins.bravesites.com/

The dust settles and we move on

So the dust is still settling after the general election in the UK. Saying that people are not happy is a bit of an understatement. It does make me wonder what is going to happen for the majority of people, like myself , pensioners and working families over the next five years.

Food banks are now popping up every where and its not just the jobless who are having to rely on them more and more. Disabled people who have had their benefits cut and families who even though they work, are still on or below the bread line.

It makes me ask the question, what experience have these political think tanks have of the real world? The issues that low payed working families or disabled people may face on a daily basis? The same with the Prime Minister, who was bred for a political career, never held a 9 - 5 job for a pittance on a zero hour contract. Didn't have to make the choice between putting the gas or the electric on this week or go through the humiliation of being told what he could do , afford and buy. What I found ironic was it was 70 years since VE day, and on that day we handed the country back over to a government that is turning more and more into a dictator ship,plunging this country back into the dark ages of poor/work houses and making the class divide even greater. It seems to make a mockery of what our predecessors fought for.

But enough of this political rant. It does however worry me about how the changes in benefits for disabled and the selling off of the NHS will effect me and mine. I have sent off my PIP form last week and now have a nervous wait to see if I need to attend a consultation. Not only was it depressing to fill in the form, well you don't normally stop to think how these things effect you on a daily basis , it is not ideal for trying to explain every thing. You are not even guaranteed a medical professional to access you during a consultation. So how the hell are these people going to have a clue what it is like to live with no legs for example? never mind every thing else. Now am not saying we don't need something in place. Unfortunately, due to the small few who do take advantage of the system, we need some kind of process, But surely during the consultation it should be a medical professional such as a GP or consultant and some one who has first hand experience of that disability? Example for me an amputee or they have a family member who is or they suffer  with fibro? with me?

That aside it has been a mixed bag since the last post. First exam out of the way. Stayed very calm and am quietly confident that I got at least a pass. The things that where put in place where great and helped a lot. My own room, lap top and the extra time made the difference for me. Next exam is tomorrow so fingers crossed.

Booked hotel rooms for me and Annabelle to attend Asylum 16 next May. Its a Supernatural convention in Birmingham. Gutted I missed it this month as the actors who play Crowley, Dean and Sam are here. But still got the London Film and Comic Con to look forward to yet, One day hoping to get to Sand Diego Comic Con.

Still looking for another star to attend our Monster Masquerade Ball, so any one famous reading this please get in contact lol. Set up a website for The Psych Twins as well so will be building on that over the summer months . Hoping it will be a source of support and information for any one who is disabled or has a family member who is or suffers from a metal health issue.

 Agreed to do the Great North Run in 2016. Why do I do this to my self? Anyway still looking for a trainer to help with the fitness thing and we have decided to run it as Patsy and Eddie from AB FAB. You might be asking why we are doing this? Good question ! The Psych Twins would like to open a center  in the North East that will offer people support, advice and information to any one disabled or family member of some one disabled as well as parents with children who have ASD or ADHD. 

The vision is that people could pop in for a coffee chat to peers who are going through the same thing, find out what events are on that are suitable, what help is available, help with filling in forms and get advice as well as a counselling/ therapy service for any one who needs one to one help.

I also see us running a play group once a week for parents of children who have ASD/ADHD so while the parents are having a  coffee a break and able to exchange tips and advice with their peers, the children are in a sensory room  and organizing events for families to attend. Big dreams I know.

On a personal level I have started up the exercise routine again and going to get David to show me how to use the treadmill . Also having another go at the slim fast diet again so fingers crossed.  Hopefully I will pass onto the second year at campus because there is so much I want to do. After getting the degree,as long as it is a 2:1 I will be accredited by the BPS and then the plan is to move to Teeside University to do my doctorate in counselling Psychology so I can be registered and practice CBT. After that maybe sit my licence to practice in Florida. Who knows?

Big plans, Big dreams but back to earth at least until the next two exams are over with lol.

So links that might help. Remember if you can not click them here then copy and past it into your browser/ new tab.

https://www.facebook.com/psychtwinsfundraising?ref=hl   Our Facebook Page please like and share

http://thepsychtwins.bravesites.com/     Our website please share

https://twitter.com/psychtwins          Find us on Twitter

https://www.facebook.com/events/417935758373799/   for info on the Masquerade Ball

If you need to talk or need advice please contact me here or on any of the above

ASSESSMENTS, EXAMS AND STRESS !

May is the season of those all dreaded exams !......well it is for me.

Coming to the end of my second year of a four year extended degree course in Psychology. The time has gone so quickly. It seems like only two minutes ago I was all wide eyed and eager to be on campus . Now I feel like a veteran fighter of SPSS software, Research papers , Journals and library books. Don't even get me started about he referencing !

I am happy with the progress that I have made this year but the attendance is a bit of a let down. Understandable considering that I have been dealing with personal issues, stump splitting and other health issues that have plagued me more this year then last. But if I have managed to get the results I have off the attendance I have had for this year then next year they will be even better.

Preparations have gone well and I have actually managed to get some decent revision time in. I have been sent my exam timetable where I have been given extra time , PC use and a scribe if necessary. This has greatly put my mind at ease.

Another area of assessment was for an electric wheelchair. I was referred by the Disabled Service Center at the Freeman's. But this has took at least four month for an appointment to come through in order to be seen. I ended up having to miss University as it was an all day appointment. They could not give me an actual time that they would be coming out. Well after waiting all day they came out and the assessment was over and done with in five minutes. I have to wait 3 month to find out if I qualify then two month to get an appointment to try one out then another 2 month before i get one. But here is the downside. It can be lifted into a vehicle and it cant be folded down to go in a boot. So what ever car I use mine or a taxi has to have ramps that I have to maneuver the wheelchair up. After my track record of wheelchair ramps with Station taxis and various others, including my close call with ending up in hospital because one taxi company dropped me off the side at the top of  a pair of these ramps, well, lets just say am not convinced it will be beneficial or indeed useful for me.

Still no news on being referred for a scan on my legs and stumps for blocked vessels or issues. If you remember this was due to the splitting of the stumps and the lack of colour and how cold the legs where becoming. Put it this way they would be warmer sometimes being stuck in the freezer at -30.

But an assessment of another type has been received. The dreaded  PIP !!!!! da da daaaaaa!!!

So finally it is my chance to go through the process of the PIP reassessment for my DLA. This should be interesting . Now there has been a lot of horror story's going around about being assessed for this such as people losing there benefits, being asked if limbs will grow back. being told they are capable for work or not being told that they qualify for mobility for a car. So I have two large booklets to fill in , trying to explain to some one who might have no medical experience what so ever that no matter how many times the form asks, no I can not walk with out my prosthesis, yes that means I can't climb stairs, no my wheelchair does not turn me into a darlek meaning I can now do steps etc by flying. Oh and no, they are not going to grow back anytime soon.

But although this is a stressful month there is light at the end of the tunnel. One point of light is I have re booked Disney for three weeks this time next October. This is booked through Jetsave so lets see how they compare to Thompson. The assistance form leaves a lot to be desired so reserving judgement on the rest. This time trying a deluxe resort at the Wilderness lodge. So considering we had excellent service from a value hotel and a moderate hotel from Disney, I am expecting this to blow my mind.

A second light is that we are definatley going to London Film and Comic Con at the Olympia this July. I am nervous about this as I have no idea what the facilities for wheelchair users are. Looked at the layout of the exhibition center and seems easy enough but lets wait and see. Getting cars to take us down as am not brave enough yet to try British rail lol. Staying at the Olympia Hilton that has been booked online and have stated that am a wheelchair user so again lets see what happens. Showmasters as yet have not replied to any communications regarding disabled issues etc. tut tut.So this is me going out of my comfort zone. Watch this space for feed back on both of these things.

Also looking at trying to get people together to do gishwhes which is a world scavenger hunt and hoping to get tickets to Asylum 16 which is a Supernatural convention. Watch this space as well as me and Jo have opted to do The Great North Run in 2016 dressed as......wait for it.......AB FAB ! am Eddy of course :)  This is in order to raise funds for The Psych Twins so we can open a center to offer support, advice and counselling for disabled people and their families including families of children with ADHD and ASD. A news article to follow on this soon.

Here are some links all you need to do is copy and paste them into your browser:

https://www.facebook.com/theamputeediaries

https://www.facebook.com/psychtwinsfundraising?ref=tn_tnmn

https://gishwhes.com/

https://twitter.com/greebo89

http://www.showmastersevents.com/

So no pressure then......

PREPARATIONS , BIRTHDAYS AND COMIC CONS

I am trying to improve the blog so that as well as detailing my life, trials and tribulations being an amputee and in a wheelchair, but also as a source of information, help and advice.

I would like to think that if just one person found an answer to a question or reassurance that life goes on and they don't need to think of themselves as a burden on family then  I have done something right.

We are coming to the end of our first year on University campus but my 2nd year of a 4 year extended degree in Psychology. It has had its ups and downs but has definitely been an experience that am glad I had and looking forward to next year.

The support has been brilliant from Student Finance, the disability team at University and from the staff themselves. But we are now coming up to exam time. eeek ! But do not fear, every thing has been put in place for me to succeed , well as far as not worrying about access etc I still have to sit and pass the damn things.

I have received my own timetable, been given extra time to complete exams a long with a separate room and invigilator, PC and some one to scribe for me if needed. This is brilliant as it takes off any added worry or pressure that this could have caused for me. Now just need to try and stay calm and sit the exams in May. Wish me luck.

Last month I took part in a number of things after making a promise to myself to have as many new experiences as possible. Never let anyone tell you you cannot do something because you are disabled or in a wheelchair.

First off I took place in raising money for Student Minds through a group at university called Thinking Ahead.  This involved doing a couple of radio interviews with Sun FM. I set a target of  raising  £100 , once reached then I would shave my head.Well as you can see from the photo the target was not just reached but smashed with a grand total of approx £182 raised ! The head shave took place in The Prospect building at University where we offered people the chance to take a chunk of hair for a donation. After an hour the head was shaved.

If you wish to donate the link is https://mydonate.bt.com/fundraisers/jenniferclark1

Thinking Ahead are on Facebook https://www.facebook.com/thinkingaheadsunderland?fref=ts

We also celebrated two birthdays in the house. Toyah turned five and Eden turned nine. Unfortunately did not make Toyah's birthday party due to ill health , but from all reports it was a success and Elsa stole the show.

Eden's was held at the Sandcastle Pub in there fun house. Access for myself was fine with no issues being able to get in or out of the building or the fun house. The children all had a great time and what was even better was there was no mess for me to clean up. So a win win situation.

My other big outing during March was to Newcastle Comic Con which was organised by Showmasters. We bought Early bird tickets for both the Saturday and Sunday. We all got dressed up and on the Saturday I went as Maleficent.

 The attendants on the car park where helpful and checked the blue badge before directing us to disabled parking then informed us that it was free. Bouns ! Access to the building was on the level and no issues getting in . Although after the event I found out that on production of my DLA letter and Davids Carers letter he could have got in for free. The website does not state this any where and having emailed them several times about other things they are really bad at replying. As yet am still waiting for reply's on my questions !

The foyer was not crowded and no one give me a second look, well to be fair with all the Green Arrows, Storm Troopers , Darth Vader's etc I guess I wouldn't.

Being honest I was concerned about how things would work for me accessing stalls , autographs and photo shoots. But apart from the odd hiccup it was nothing to worry about and there was other people with wheelchairs etc present as well.

Showmasters had handled things really well considering how badly things could have gone and I was impressed. It made my first Comic Con very enjoyable and wanting me to do more. The staff where helpful regarding access to signing and  the photo ops and the stars themselves went out of their way to make sure I got the same opportunity as the other fans. Finding the disabled toilets at the venue proved a challenge

so ended up using the normal toilets and getting out of the wheelchair to use the cubicle. Not great if that is not an option. Getting around was slow as the venue was not large enough for what they had in there and the main worry was Anna crashing me into stalls, autograph tables (which she did twice) and taking peoples ankles out. It also made shopping and looking at the stalls very difficult. But we waited until it had cleared out a bit by 4 pm and accessing the stalls at that point and being able to get around was fine, much easier. If you don't like crowds or being hemmed in with the threat of going into some one or them falling on you I would  wait until it has quieted down for the shopping.

The only problem with that is that the traders bring limited stock with them so you may miss the chance of getting that certain something.

Unfortunately due to the long day and excitement my fibro flared up and stopped me from going on the Sunday. But I must have made such an impression as Garret Wang ( ensign Kim from voyager) saw Anna and asked where I was .....not sure if that was good or not as not certain whether it meant I made a good impression or the wrong type of impression !

So something I want to try again. Thinking about heading down to London Comic Con at the Olympia, Again not certain of their access at the venue for wheelchair users as waiting on Showmasters replying to my email. But lets see what happens. Hotels are proving  difficult as a couple of them that are near the exhibition center are  not disabled accessible, nor  do they have accessible bathrooms.

Transport is also proving an issue as we are trying not to take the car due to the long drive and the price of parking. We are trying to stay as near as possible so we don't have the nightmare of trying to access public transport  such as the tube !
Also off down to Manchester in May with Anna as  she is going to see Tyler Oakley???? Which means we are taking her down and having an over night stop down there to do some shopping. So this should also prove to be an interesting experience. I have to admit these two next trips will be very much taking me out of my comfort zone and I have many concerns especially about how things will work for access, transport and accommodation.


Another thing I am trying to put into place is a fundraising site called The Psych Twins. This is to raise money and awareness for local North East Charities. In October we are going to be holding a Monster Masquerade ball to raise funds for Sunderland Carers Center. We have a comedian and burlesque act . meal. raffell and disco all being held at the Stadium of Light. We have Johnny Depp's official stand in Simon Newton attending as well as a special guest to be announced nearer the time.

https://www.facebook.com/psychtwinsfundraising?ref=hl

But on top of this I am currently carrying out research on services pre and post op for amputees .  I believe that not enough is being done with regards to advice, support and therapy.
Once the research has been carried out my colleague and I are hoping to set up a center where we will be able to provide this along with a web page containing advice and on line or telephone counselling.

If you can spare five minutes and are an amputee please follow the link and complete the survey.

https://surveyplanet.com/5509dfbe1945880c2c5b4701

If you do need to talk , advice or concerns you can contact me through twitter or Facebook

https://www.facebook.com/theamputeediaries

https://twitter.com/greebo89