THE DAY THE WORLD NEVER CHANGED

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

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

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

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

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

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

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

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

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

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

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

 Now there’s food for thought.

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.

TIME GOES SO QUICK....

So Annabelle 16th birthday has came and gone already. Michael is coming up twenty one in less then a week and Eden ( my second eldest daughter ), turns nine the day after Mikey.

As well as getting crowned in Disney we took her for a meal in town. A restaurant called D'Aqua in Sunderland.

Now this restaurant does not have disabled access, in fact there is quiet a steep set of steps at the front of the premises. However upon ringing them they helped to solve the problem and told me that there would be no issues for me to use the kitchen access at the back of the building as it was ramped with one small step to negotiate,

The staff and owners bent over backwards for myself and to accommodate the wheelchair and where fantastic with the little ones as well. Nothing was too much trouble for them and they made the children feel welcome. even thought it is what I would class as a up market/ chic restaurant. As for myself I felt very comfortable and not once did they make me feel as if I was an inconvenience ! Bravo ! unfortunately there are not many places around where they bother to take into account your whole experience including how you feel and make you feel welcome.

So if you are looking for somewhere a little different and that little bit special I would defiantly give this place a go.

If you do have mobility issues like myself then do ring them They are very accommodating (within reason of course), and are more then happy to help if they can, The prices where good and the food quality was out of this world. My kids can be fussy eaters especially Tyler as he has sensory ASD, but they left nothing and even asked for more.

 The cake we had made for her by Bella Sweet delights, I will put the link for both the restaurant and Bella at the end of this blog should you be interested.

The limb center meeting about the bleeding stumps and coldness of the legs went better then expected. They are sending me for a scan of my legs as although they have a good pulse they could be a narrowing of the arteries or a blockage which is causing the issue.

This has had to be referred from the GPs  so as yet still waiting on an appointment.

The kitchen is now looking more like a kitchen. We finally got a sink back and cupboards to put things away. Still waiting on flooring but we do have the holes fixed with ply wood over the top, An extractor fan and tilling still need to be done so we can then decorate but still missing skirting boards.

This has now been on going for  6 or 7 weeks now so starting to get a little sick and tired of it all.

The last thing I want to mention is help for anyone who might be looking or thinking of going back to work.

Don't think that there is no help out there as if you need support, help with your travel needs or specialist equipment then it is available through Access to Work.

As well as this there is a little known about incentive for employers to take you on as well. There are funds available for the prospective employer to have adaptations done at no expense to them as well as money for taking you on. There is no cost to the employer for any help or equipment supplied. This can include things like chairs, desks or wrist rests and many more things.


Next time I will be reviewing the services used for Toyahs birthday, my charity head shave, Sun FM interview and help being put in place for the exams (hopefully ).

I would love feed back on this blog so please feel free to share and comment and if there is anything in particular you would like me to look into or have a question about then please let me know.

On a lighter note..when moving please remember to take the one break off you have put on as you will end up going round in circles..just like I did because I forgot !

https://www.facebook.com/pages/Bellas-sweet-delights/619275984859630?fref=ts

http://www.dacqua.co.uk/

https://www.facebook.com/pages/DAcqua-Restaurant-and-Bar/158809227587465?fref=ts

https://www.gov.uk/access-to-work/overview

ITS BEEN A WHILE...MISS ME?

First off my apologies for not submitting anything for a long time.

A lot has happened in 6 months. Started university in Sunderland and although some days are better then others am managing alright for the most part. The Reg Vardy building has a few issues in regards to accessing the rooms for seminars and the lift has been off a few times in the last couple of month , but over all not too bad, I have seen worse . The prospect building where the bulk of the lectures are held and the library is housed is great and very easy to access. I have a support worker to push me around with me not being able to self propel due to the fibromyalgia and to take notes if things get too bad, but the lecturers have been extremely helpful. Not doing too bad on the work side of things and coming up to exam season soon so preparing for that. Busy finishing up the last of the essays and reports. Can't believe the time has gone so quickly.

Went back to Florida again in October and what a brilliant time. Flew with Thompson and I have to say their attention to detail was outstanding.

The help we received with the wheelchair and getting the help I needed to get on and off the flight was brilliant. We stayed in a Finding Nemo suite in the Art of Animation and although it was budget it was a lovely resort, very accessible for me including the pool area. They have accessible rooms with roll in showers which where fantastic.  We used Tiffany Town cars to get around outside the park and again great when it came to dealing with me and the wheelchair.

No matter where I went, shopping, Universal or the Disney parks the staff where all very helpful and it never felt that me or my needs where an inconvenience. I have to admit the first time I thought of going on holiday after the amputation never mind abroad it was terrifying ! Then to go abroad on a 9 hour flight, well lets just say I thought I was insane to do it with 5 kids in tow, but if you are willing to take a leap of faith it is worth it. I experienced more this time and made a point of going on more rides and taking part in more photo opportunity's which is exactly what I did.  To be honest it is a shame that places in the UK don't take a leaf out of Disney, Universal and Thompson book with regards to how they treat disabled people and children with disability's

Tyler was never left out of anything either due to his ASD. When the ques where too much for him and there was issue with sensory overload due to his ASD they give us a card . You went to some one on the ride showed them the card and they would give you a time to return for that ride FREE. Now this might sound familiar and so it should. It is the same principle as the fast pass system used in this country at places such as Alton Towers and Thorpe park, but these you have to pay for on top of your admission ticket. In the UK you are made to feel like an inconvenience in these places or that you are making people go out of their way to accommodate you. This in turn can make you feel like you don't want to take part or get in the way, even when you are like me and have a hide like a rhino.

November and December passed with a few issues concerning my health and Tyler's school.

A small run in with a teacher who was teaching back in the day when children being "too clever for their own good" or the attitude of no such thing as ADHD just naughty children applied. Tyler and him had a few run inns just before Christmas which caused Tyler's ASD to escalate. This accumulated in a suggestion being made that he should go to a inclusion school as he would never pass his STATS due to being uncontrollable , (this was news to us as Tyler has never had any issues like this at school before) and things happening like Tyler walking out of class and getting into arguments with the teacher. (mind you why a grown man is arguing with a ten year old to start with never mind a ten year old with ASD !!). After a very interesting meeting where it was pointed out that said teacher shouting at Tyler all the time was the same as him physically hitting him.,(Tyler's ASD is sensory so loud noises cause him pain), and asking why things that had been agreed to be put in place had not been implemented yet, making sure things that had been implemented where still being carried out I requested for him to see a Educational Psychologist.

After various tests it turns out that Tyler is a gifted boy and there should be no reason why he wont pass is STATS, go to comprehensive in top sets and fly through University ! Said teacher is retiring this year.
So Christmas came and went and so did my kitchen. After a hole appearing in the floor it was deemed too dangerous for me to use the kitchen with the wheelchair. So I started trying to cook meals alternating between the kitchen and taking rests in my wheelchair that I had parked at the entrance to the kitchen. This did not work well. Then the real problems started.

Now am used to my left stump splitting, after checking with the limb center I was told that this was nothing to worry about as it was the way the scar was and it was just rubbing in the liner. But now my right stump has split and there is no reason , nothing to rub and it has split along my scar. After a run around with the NHS and being bounced from a NHS direct call center , to a paramedic, to the GP, to a skin specialist who turned out to be a district nurse and finally to the limb center, I have ended up on antibiotics and a emergency appointment at the Limb center. However this has unfortunately lead to nearly two weeks off from University,

 So now you are all caught up.....just about. There is some interesting news on the horizon. A colleague and me are going to be doing some research into therapy pre and post op in the hope to push this through into a regional center to provide support, advice and therapy for people  not just with amputations but with all disability's. I am also looking at expanding the use of this blog into assessing venues, events, hotels, pubs, cinemas, clubs etc for the ease of use, treatment and helpfulness. AS well as this we are looking to set up a website and information leaflet. Watch this space !!

Next blog I will let you know how my daughters 16th went and how the restaurant helped me to make the most of the night with my family. I have two birthdays coming up at different venues in Sunderland as well as Newcastle Film and Comic Con at the Newcastle Arena, which I will be reviewing as well, hope fully am looking to get some input from said venues and events as well.

 Hopefully though my experience of taking chances like going back into full time education, starting my own business, going out to work etc I can encourage and help other people to do the same. Showing that just because you have had a amputation, or you are wheelchair bound or in fact have any kind of disability, even if you know some one ,a family member or friend maybe even your child who has a disability  that effects them, there is places you can go, things to do and experiences to enjoy.

Live life to the max. Never give up.

Useful links from this blog:

http://www.tiffanytowncar.com/about.html link to the town car service used in Florida.



http://www.thomson.co.uk/gsa/gsa.html?q=disability&site=default_collection&client=production_frontend_new&proxystylesheet=production_frontend_new&output=xml_no_dtd&toySiteSearch=Go  -  Link to FAQ about issues concerning disability's on Thompson holidays and flights

http://sls.sunderland.ac.uk/disability/dsa/ - Link to Disability services at Sunderland University.

SUMMER

I have now been on summer break from University since the end of May and the weeks have been stretching away into the distance. It seemed at one point that they would go on forever, but as I sit and type this I realise that it won't be long before am back at University again.

Am due to start back on the 22nd of September and my freshers week timetable has just arrived starting on the 15th of September. I have to be honest and say that the summer weeks have been slow for me and am looking forward to going back and getting my teeth stuck into the work. I was really happy with my results from my first year which was a level 0 with most of my exams and assignments coming back as a first. So it was with a happy squeal of  delight that I read my transcript to see a pass and proceed.

My meeting with the DSA team at the university went great and am going to be getting a lot more support from them this year that wasn't in place last year. Things such as extra time for exams, copy of lecture notes in advance, a scribe to take notes when my hands are too bad or to help during the exams, deadline extensions if needed, rest breaks and the ability to record lectures as well. Taxis all week to get too and from University and a support worker for 37.5 hours a week, which is great and means I can work in the library when I need too when I don't have a lecture or seminar. They are also sorting out desks for the right height for the wheelchair and extra loan times or help in the library as well. I think the problem last year was down to the fact that it was not through the University itself but in partnership with the college. This meant that things I should have had the college could not supply or had not been informed about by the powers that be and the University could only pass on what my needs where  as technically although I am a University student, I fell under the college jurisdiction.  Hopefully the college will sort out the issues they had ready for the new term this year.

David Goldman building where the first lecture will be  the welcome from the Dean

So what else has been happening since we last spoke? I hear you cry ( ok well maybe I didn't hear it but you might be thinking it? ) My eldest came back from University at Stafford at the end of May and is now getting ready to go off to Leeds festival in a couple of weeks. He will then be home for a few days when he will be packing back up again to head back to University. Sadly I lost one of my cats last week Harley Kitty  so that upset every one in the house.  

Harley Kitty RIP

The other health issues are the same old same old. Back at the chest clinic for my sleep apnea and chronic fatigue . Looks like I will have to take my CPAP machine on holiday with me. Also had to go back to the doctors for Tramadol and to see about my hands as the pins and needles are getting worse and am now losing the feeling in some of my fingers. They think it might be a nerve problem so we will wait and see.  As for the weight loss?..well...mmm.. not so good. I admit I have no willpower  which sucks when you are trying to lose weight and need to be good. I have upped my exercise program so as well as doing my physio on a morning and my version of Ti Chi, I am also doing push ups, weights, leg raises and wheelchair exercises I found on You tube. As well as this I have changed my eating habits. Cut out processed bread and food, eating more salads, fruit and veg along with fresh meat. As well as this I am also trying out that 5.2 diet. This is where you eat as normal 5 days a week and fast with shakes for two days. You also get one meal each of the two days but no more then 126 cals per meal. Yes I do feel that am starving but having looked into weight loss surgery as recommended by my doctor, I would rather do this then put myself through that. Any one who reckons that it is an easy option have no idea what they are talking about! Although I do have to say some of the people I know who have put themselves through this have wasted their chance as they are not making the drastic changes or not sticking to the changes they need to, so in my opinion have put themselves through all of that stress and pain for nothing. But as usual I will keep at it and try my best. Its not all doom and gloom I have managed to shift a couple of pound at least.

So to end this on a good note we finally told the kids about going back to Florida this September. We waited for Tylers 10th birthday party and got Captain Jack Sparrow to tell them. To say I have the most reserved and typically English children ever is an understatement. They didn't get excited until after they left lol.

 So every thing is ready for us leaving on the 29th for two weeks in the sun. Now that we have been before we are aware of what to do and what to expect for myself being in a wheelchair and Tyler who has ASD. There has been new things I have found out in my extensive research this time that I did not know the last time. Such as getting a wheelchair adapted room with a roll in shower, DAS and AAS passes for universal and Disney World for Tyler, making restaurants aware I am wheelchair bound prior to the meal,being able to order groceries delivered to your room and booking a Town Car for going off property so you don't have to drive or worry about accessibility. I have also decided to blog more about my experience traveling with my disability and various health issues as well as blogging more about my experience at University. They will be more pictures as well. This is in the hope that it will help people who are going through/been trough, friends and family's of any one who has any kind of disability or health issue  to know that life doesn't have to stop because of it no matter what the disability/health issue is.

YOU CAN ACHIEVE WHAT EVER YOU PUT YOUR MIND TOO. YOU ARE THE ONLY PERSON THAT CAN HOLD YOU BACK 

REFLECTIONS

Happy Valentines to every one !!!

Its times like this that make me reflect on how lucky I am. My mam always used to tell me that I should be thankful as there is always some one worse off in the world then me. She was right.

Although the pain today is making it hard to appreciate and see that.

Due to this horrible weather the UK is suffering from  at the moment, my pain has tripled and caused all kinds of issues. One being missing time at college. I have already had to take a week off and struggled most of last week to attend. By Wednesday they where so bad I had to ask some one else to do the experiment for me ( dissecting and eyeball yummy !) and some one else to take notes. Thursday I had to miss a big maths exam in algebra, luckily though the college have been very supportive and I will be able to sit it when I return after the half term.

Its one of those days where I could climb back into bed, pull the covers up, curl into a ball and cry with pain.  Instead due to  having responsibilities and things to do, it has made me reflective. Since my first Symes amputation 7 year ago my health has started to deteriorate. By the time i had both lower legs removed 3 year ago it rapidly went down hill. I have been currently diagnosed with the following:

stating the obvious - double below knee amputation
raynaud's in my stumps (circulation issues)
Osteoarthritis in knees, lower back, hips, shoulders, wrists with possible Rheumatoid arthritis in hands
Severe sleep apnoea 
Chronic fatigue syndrome
IBS
Ulcer
Fibromyalga
also prone to anxiety and panic attacks as well as depression.
Now isn't that a lovely list !! and that's what I can remember off the top of my head.

But am still lucky.
My hubby David has been my rock and there is so much put on his shoulders and he takes it all in his stride. My children have been brilliant. They may have the moments ( which kids don't !) and  I may not see eye to eye with the two oldest ones, but with out them two I would be lost. My support network also contains my very close friends ( you know who you are), who are like family to me and are my surrogate brother and sisters again we would be lost without you. Our  own family's have not been there to be blunt about it. David  is a proud person and does not like to ask for help from any one but during the amputations and every thing we have been through,  not one member of our family's offered or even asked if he needed help or support with the kids. As my mam was dead by this point the only person that tried was his mam, god rest her soul. No phone calls, no hospital visits, nothing .

But am still lucky.
David is my 3rd husband. The first one is not worth mentioning, a silly mistake from my youth. The second is the oldest two "sperm donor" ( sorry jo had to pinch it), went missing for 8 years of there life and refuses to pay a penny. What he has paid over the last 13 years is about a years worth with arrears in the thousands but always finds a way to  get out of it or disappear. And David plods on, taking on more and more so I have to do less and less, never complains still loves me for me a fantastic father and a fantastic husband. He always understands when am ill, knows the right things to say or do, how to make me smile and stands by me no matter what. I have had other tests done that have thankfully came back with the all clear including for my liver, heart (they thought I had been having mini strokes),cancer and genetics. At this moment in time we are awaiting the results from a MRI scan . Every time the post comes I get a sinking feeling in my stomach. I honestly don't think i could take another lot of bad news, another diagnosis of something being wrong or something else for me to fight against in order just to lead a normal life.

But am still lucky.
I am not doing well with the weight loss, still trying to battle on to get this degree as I want a better life for my family. My youngest boy has ASD (autism spectrum disorder) and may very well have a form of Talipes ( we need to have that confirmed) and taking him to Florida every two years is my goal as it really helped him to manage some of his social issues and bring him out of his shell. I don't care if I have  to scrape the money together or beg borrow and steal. I will do it for my children especially him. I don't care what any one thinks or says.

But am still lucky.
I want to work, but I can barely manage to type this blog today.

But am still lucky.........


  

TIME APART

It has been four month since I last wrote anything. To be honest I didn't see the point or writing unless there was something to write about and the last four month to some degree has been the same old same old....
However saying that certain things have happened.

Still trying to battle with the Fibromyalgia which has included and not limited to CB Therapy which didn't work for me, upping my exercise, changing my diet, playing around with the pain killers and just in case some herbal remedies.  So far the attacks are not as often unless I do something really silly like write, hold a book for too long or try to bake (Easter saw me laid up for over a week!)Still waiting on the Sleep clinic, off to there next week so lets see what happens.

With regards to my personal life I have re booked Disney for next year and I am happy to say that I have got my place at university to study Psychology in September.

 However as a disabled student I am still trying to get the college I am doing the first year with to complete a questionnaire I need done to enable me to be assessed by the University for the help I will  need whilst there.  I am glad to have something to look forward too as I am sick and  tired of being out of work even though I know it can not be helped.  I really don't understand how some people actually like this kind of life!  David is still working hard with his photography and my eldest is due to leave to go Staffordshire University in September. My eldest daughter is achieving well at school and I am very proud of both of them. I am unsure if I have mentioned this before but my youngest son Tyler has been diagnosed with ASD(autism Spectrum Disorder), which has proved to be challenging but very rewarding at the same time. It looks like last years trip to Florida helped him to adjust and accept certain things better so hence the reason why we have booked again, even if it kills me or breaks me, we are going back if it means it will benefit him.  Not to mention the brilliant time we all have as a family.
We have been told it is more social interaction that he has the issues with and is 2 year ahead in maths and reading then his year group/age and could sit his SATa now.  He is 98th percentile when it comes to using and understanding context and grammar of language....in other words he is a smart arse :)

The biggest thrill for me so far has been when I was asked to do a screen test  for a major film role but it is all hush hush so can say no more, but how many people get a chance to even do that, it was one hell of an experience !

Things with rehab and the amputation have came to a screeching halt am afraid.  Was trying to up the anti with the walking and being more independent (due to the fibro I can no longer self propell in the chair) and was using the recent nice weather to  try walking and physio in the park. It looks like I have developed a pressure point though.  Woke up 2 days ago, put my legs on, went to the bathroom (ooh which I forgot to tell you has now been fully adapted, we paid for all the decoration, the council paid for the adaptations)and when I took my legs back off it was bleeding right next to  my scar. After trying to get some information on what had happened and how to manage it (GPs as usual wanted nothing to do with it as it was down to my amputation and the district nurse couldn't do anything or suggest anything to do as it was not an open wound),  it looks like a problem with the legs so I need to go to the Freemans...but there is a problem you see....they will take my legs off me due to the fact am overweight for them.

Great choice eh? lose the legs, become totally housebound again (screwing up uni), and be a fat bird in a chair with less chance of losing weight (how do you lose weight when you can't get out of a sodden wheelchair?), or say nowt, wait for the pressure point to(hopefully) heal and keep trying to lose weight by exercise as well as diet (without starving yourself),praying the pressure point doesn't come back or get infected?

I am starting to wonder what help there is for amputees in the UK, or more specifically in the North East of England.  My experience's so far are not good. There seems to be no support network, or places to go to find out answers to everyday questions concerning pressure points or weight /exercise problems for example. It is very much a case of being bounced around from the doctors, nurses,limb centre,walk in centres and physio with many of them either unwilling to deal with you or just no understanding of what you are experiencing.