DARE TO BE DIFFERENT

So Tyler's transition into comprehensive is going well. Too well, he has really enjoyed the couple of days he has spent at the school looking around and taking part in all the activities. However am wondering if it is going to be a different story once he is there full time, having to mix with the older kids and change classes all the time, learning a totally different routine. Biggest problem with him having ASD is that he does not cope well with his routine being changed.
I worry about how he is going to cope with the changing routine, the overload on his senses of sights, sounds and smells, the amount of people there are going to be. Any one of these is a potential for a meltdown for Tyler. That's not even mentioning the bully's , you know how cruel kids can be when they find out you are different to them. I certainly do. Having vivid memories from my School days at comprehensive. Constantly feeling left out, on the edge, unliked and used for peoples verbal punch bags when they felt down about themselves. Various cat calls of "spaca" " granny boots" "freak" and "cripple". Maybe am just being over sensitive because of what I have gone through, after all his differences are not physical, but even though things have supposedly moved on etc etc kids can still be cruel little gits when they want to be.
Maybe am just being a typical mum but I can't help but wonder if we are in for a rough ride when he starts school.

This brings me to the think about the difference between what is meant between "disabled" and "accessible". In this country disabled and accessible seem to mean the same thing.  Although there has been some hotels in London when we where looking to book somewhere for the London Film and Comic Con that seemed to stretch the idea of both. One hotel thought that when they listed their hotel as disabled friendly it did not matter that disabled access only meant that it was a wide foyer and automatic doors but that there where a  couple of steps at the front to access the building in the first place. When questioned about disabled access into the building, I was told that there was no ramp but if I could not manage the 6 steps outside ( bearing in mind I had already told them I was in a wheelchair and could not do stairs) then some of their staff would come and lift me in....really??? No. I dont think so.  "Disabled" toilets have both grab rails and raised toilets as well as lower sinks and wider doors for wheelchairs. The same with accessible buildings. They have automatic doors, bigger lifts and ramps. But the same thing is not true for other countries.
This has been noticeable when I have been travelling to America. In Orlando Accessible means a slightly bigger toilet with a grab rail and a slightly higher toilet, but not actually big enough to go in with a wheelchair. If you are a wheelchair user then you need to ask where a Disabled bathroom is which is then big enough for a wheelchair to get in and position/ turn around, lowered sink and hand dryer and a higher toilet and raised toilet seat and grab rails.
Bear in mind the toilets in Florida are a lot lower then in the UK so when I say the toilet is higher it means that it is about the size you would get in this country. But not every country has facilities for disabled people regardless if they are in a wheelchair or not. So I suppose we should be grateful that we do in the UK.
But are you like me? I get frustrated when you have a large male and female toilet block but only two disabled bathrooms and people still insist on using the disabled ones, even when there is no line in the other ones. This is  because they want to do their makeup and talk to  their friends or they just can't be bothered to walk the extra few steps  to the other toilets. I never have a problem with some one with a pram or small toddler especially if it is a dad out on his own with the little one . Using the disabled toilet in that situation is fair enough in my opinion. I don't know whats worse though the fact when they come out they wont look you in the eye or they come out head held high and completely blank you as if you don't exist and you are not sitting there at all !

But that is my ramblings for today. Another busy week behind me and another one ahead of me. Pain killers still not working so guess its back to the docs for that. More issues with the hands so cooking is now becoming an issue for me and any work I do have to do am finding that I am fitting it in as and when the pain and swelling allows me. The event for The Psych Twins is coming along nicely and we have been very lucky with the prizes we have been donated so far. Now we are just waiting for the printers then we can look at doing the promotion in the Bridges. Forced to look at new cars by the hubby as our mobility car is due to be renewed and preparing myself for the mayhem that will soon be the summer holidays.

If you want to get in touch with me you can on the following links for linkendin, Facebook and Twitter
https://www.linkedin.com/profile/preview?vpa=pub&locale=en_U

https://twitter.com/greebo89

https://www.facebook.com/theamputeediaries

or find out more about The Psych Twins

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......

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 

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.