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

JUDGE NOT LEAST YOU BE JUDGED OR AS YOUR MAM SAID IF YOU HAVE NOTHING NICE TO SAY THEN KEEP IT TO YOURSELF

So it begins. The long war of the six week holidays. We are only at the end of the first week and already am feeling slightly frazzled.
Good job I had the two night break down the metro centre with the just the hubby. Recharge my batteries with retail therapy and us time.It was lovely! The Marriott was lovely. They give us an accessible room although  am not 100% convinced it was. The door to the room was difficult to get through unless you where angled straight on, but the room was very spacious and a huge king size bed. The bathroom was big and the toilet had grab rails and an emergency cord but the bath was not accessible and no bath board or seat was supplied.
The room was next to the lift which I had also requested and access into the building was great although, disabled car parking spaces were limited.

 The Metro Centre as you would expect, very disabled friendly, but some of the shops left a lot to be desired regarding access and help. Shops such as HMV was laid out great for someone in a wheelchair or with a pram. Other shops where more then happy to help if space was limited for example by moving racks out of the way or getting what you needed. However there where shops such as Topshop who where no help what so ever. Getting into the shop to look at clothes was ok but once in maneuvering around the racks of clothes was a complete nightmare! Forget trying to have a look at the sales rack and trying to get to the check out to pay, well not unless you can bend time and space. There was a complete lack of help and those staff who where around did not offer any help what so ever. In fact their nails and cuticles looked of great interest to them whilst I was in the shop. Upon asking the assistant behind the cash desk why the access was so restrictive for some one in a wheelchair or with a pram I was told that it was down to head office and how much stock had to go out on display. The only thought I had leaving the shop was maybe if you have a pram or are in a wheelchair then you are not allowed to be fashionable!

But that brings me to people in general. I don't think I will ever understand the human race no mater how long I study Psychology. People can be so generous, kind and helpful and this sometimes takes my  breath away, but then you have people who can be so narrow minded, down right nasty and selfish. What happened to this society? They used to be a time when people would help each other out especially in their own community. Today people seem so hell bent on their own selfish lives. Every one is entitled to there own opinions but today people seem to think that their opinion is the only one that matters and woe betide any one who differs. They are shouted down, belittled and ridiculed. There was an article on people who Cosplay and attended London Film and Comic Con. Now as stated before people are entitled to their own opinion about this. Some people might think its silly or sad but then again these people  might watch Big Brother which I personally find moronic and sad, but I would not ridicule, poke fun or belittle  these people for that. However this "journalist" (and I use the term lightly) thought that it was fair enough to have open season on the Cosplayers. Not at their costumes or their inaccuracies if any but at the actual people. Ridiculing their tattoos, size and the fact they liked to Cosplay . In fact calling them " oompa lumpas". Some Cosplayers from iCoslay who support a campaign for anti bullying penned a reply. Today this journalist published his response and yet again could not keep civil about it. Telling them that they are sad and if they insist on playing dressy up then people where free to make fun of them and pick on them and that was not bullying.
So if that is not bullying what is? Isn't bullying about ridiculing, belittling or picking on people for being different? Race, skin colour, size, hair colour, physical ability, any one poking fun for these reasons at a minority group would surly be classed as bullying, so why did this journalist think that what he was doing acceptable and NOT bullying. Because I look different in my wheelchair, with prosthetic legs and belong to a minority group does that give people the right to ridicule me? In this day and age every one is preaching about understanding, inclusion, standing up to stigma but how can we do this when our own so called press find it acceptable to put people down for this? Whether it is physical disability, mental health or Cosplaying the stigma needs to be removed across the board.YES I am a wheelchair user, YES I have suffered from depression and sometimes still do, YES I have no legs and YES I enjoy Cosplaying when going to film and comic conventions.

I am not ashamed of any of these things, why should I? Take me or leave me but this is ME, this is who and what I am. I will not be made to feel ashamed for any of it just because I do not fit into someones idea of normal. What is normal any way? Is any one normal? This journalist is an avid football supporter does this give me a right to tear into him in a public forum or a national newspaper and ridicule his size when he wears his football colours, how he does his hair, his age or the fact he should grow up and get a life (one of his other response lines in the article), instead of cheering on men kicking a ball around a field, swearing at the ref or chanting silly songs to the opposing side?It should not surprise you to find out that this same journalist ridiculed the disabled  and has had numerous complaints against him. He kind of reminds me as a male version of Katie Hopkins to be honest.

The event I am co hosting in October is just about getting together, having fun and at the same time raising money for a worth while cause. I have managed to get the help of some fantastic Cosplayers to help promote the event and take part in the evening entertainment, all free of charge, all given up their time. Their costumes are fantastic, the time, money, sweat, blood (literally if they where sewing by hand ) and tears that went into creating these masterpieces , all paid for out of their own pockets. They are coming with me to visit the Young carers as well to give the kids a treat and a chance to have their photos taken. This is more help then the press, celebrities and even companies have offered. (I have to mention here though that Sun FM , my local radio station, have been very supportive). Who would have thought that any business, after all that is what the newspaper is, would want to be associated with a small minded, bigoted person who represents and is the face of their company?

The one thing I have learnt from doing this event is every one and I mean EVERYONE wants their cut. The venue, the celebrities, the agents, fundraising sites even some of the companies who "offer" donations for prizes. Then you have company's like The Prop Store who send you a collectible worth £200 with out a blink of an eye. The celebs are the worst, I now have an appreciation for Showmasters and Rouge Events as to why they charge so much for tickets and autographs. Some demands including  'lunch money' and  cars to all airports as well as first class flights and two hotel rooms,  just adds to an already extortionist fee for attending these things and it being for charity does not count for squat. In fact they will stand there and shout your cause to the rooftops without knowing or caring anything about it as long as the price is right. I understand that they have to make a living but some of these Celebrities are making more then enough with out charging through the nose for the fans to met them.

 I feel privileged if they even bother to reply to my emails !



You can find the event details on Facebook https://www.facebook.com/events/417935758373799/

Website http://thepsychtwins.bravesites.com/

The Psych twins Facebook page https://www.facebook.com/psychtwinsfundraising?fref=ts

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.

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