Share it

Monday, 16 February 2015

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.

Thursday, 7 August 2014

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 

Sunday, 11 May 2014

FUTURE PROOFING

Its not long now till the end of my first year on a Degree course. It has been enjoyable and at times frustrating, sometimes down right annoying, but the main thing is how far I have come as a person.

So whilst revising for or last two exams and awaiting the final results for our assignments we organised a visit to St Peters Campus and the DSA team based at The Gateway. This is something I would highly recommend for any one thinking of starting a University course anywhere, Disabled or not. It proved to be the best thing we did. For me it was the peace of mind knowing where I was going to be, knowing what to expect as this helped with my stress and anxiety issues. As well as that it was a dry run for getting around the campus with the wheelchair, fitting into lecture halls and class rooms and through doors. Again this helps with knowing what to expect so it is not a nasty surprise or embarrassment come September. For Jo it was the peace of mind knowing what was going to be expected of us , time tabling for child care and mental preparation.
 We met the head of the module who was really happy to answer any questions we had, talk us through the program and made sure we where comfortable. putting us at our ease.


 The space was incredible and so where the facilities and Jo and I have already sussed out the best root from the library to the Costa coffee shop and the canteen :). The meeting with the DSA team was brilliant as well. Again if you are thinking of attending college or University get in touch with these people. I didn't even realise how much help was available to me during my time at University. Everything from transport to get there, a helper around campus, to access to class notes in advance, rest breaks and support put in place for field trips and exams.
The library 
Looking around the campus the excitement grew and now am bouncing with the idea of starting and feel that September cant hurry up fast enough now for two reasons! I would never have thought 12 month ago that I would be able to do this or even get this far. My health was getting worse (still is but we are working on that), I had to leave work, the amputation hadn't gone according to plan and had not given me the freedom I had hoped and wished for, I was not in a good place mentally with regards to depression, body image and self confidence.

Now here I am, all assignments completed and handed in 3 weeks early, getting ready to sit my year end exams, preparing for moving to campus, looking at joining societies and trying to organize a fund raising event where I will have to be in the public arena and on display deliberately looking silly!(more news of this to follow).
my view of the lecture

Main lecture hall, my view from where I will be sat
This is the beautiful view from the canteen.
 



So this moves us on to my health and weight issues. Recently I decided that I needed to up the game with these two things. So this has taken the form of making sure I do my physio every day and I have added to this a bastardized version of step aerobics using the first step of my stairs and stepping on and off it . I currently can manage 10 of these before it hurts. Coupled with this I have started to try walking to the sitting room, bedroom and toilet with out the aid of my crutches. Its hair raising at times but I can do it...just. I have 141 days left before I head of to Florida and I want to be more mobile to do the things I couldn't do 2 year ago. I also want to try and improve my health so that I can get rid of the CPAP machine and ease the pain from the fibro and arthritis. This is not going to be easy and I know this, but its something I have to at least try other wise I will feel like a failure. I have posted a picture along with a video of me walking, this is a big step for me doing this mentally considering how embarrassed I feel and how much of a low opinion and low self esteem  I have of myself. This is a testimonial of how far I have come so far and the journey still ahead. Wish me luck !!!
This is me now at just over 21st

this is me showing how I walk at the moment and the size I am right now