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 

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

THE END OF THE ACADEMIC YEAR

This time at college has really flown by. In less than 5 weeks I will come to the end of my first year on my Extended Degree in Psychology. September will see me moving onto campus at St Peters and playing with the big boys.

I remember thinking that I would never understand any thing they where on about in Research Methods, IT or Algebra and Stats. Now look at me I am heading towards a first, Still don't understand but can do Algebra..if forced too!( still want to know why the letters, its wrong, so wrong, what do they stand for Apple, X for Xray? is it some secret mathematical Morse code or something?) Getting ready to sit a Stats exam and created, implemented and wrote a 20 page report on an experiment to do with memory for Research Methods with Joanne ( although must remember to call them "participants" and not "victims").

All joking aside, the last 9 month has been a hell of a ride for me and helped me develop, grow and become comfortable with who I am and where am at in my life. The best thing I ever did was leave the rat race and I now know that being in a wheelchair does not stop you from living your life to the full. Its not been an easy lesson and not every thing at college has been smooth. I still feel that they have a lot of kinks to iron out not just for disabled students but for everyone who takes a HE course as part of the University.

Friday sees me going across to the University for a visit to campus so I can get an idea of what faces me across their and to iron out any bumps. Also meeting with the staff and the DSA team who will help me with any needs I have. Promise to bring back photos ! Am thinking of taking on a more active role at University as well, getting more involved in things on campus. So I am applying to be a BPS student rep as well as looking at raising money/awareness for mental health with Jo by doing a lot of crazy and fun things during fresher week in September and last week of College( need to get permission first and work things out). But watch this space.

Not going to even mention my weight as am sulking about it and not speaking to my body ! but when I get out of my strop I will give you an update.

To be fair these last couple of weeks have been hard. I am currently fighting off an infection under my arm where an abscess burst and its making me feel rather ill, the sleep apnea seems to be getting worse, so too the arthritis and am swelling up like a balloon due to the fibro. So i think I can forgive myself a little here for not being hyper good with  the food and exercise.

But a bit of good news to end. I can now walk into the sitting room or to the bathroom without using my crutches or the chair. Its progress, slow, but at least its something. :)

SPRING TIME AND NEW BEGINNINGS

Can't believe its been 2 month since I last updated this.

Although things haven't been fast moving  things have still progressed in all areas of my life.

Started taking the physiotherapy more seriously again and have Incorporated it with other exercises in the hope that it will help me lose some weight. If not then at least it should keep my fitness levels up and help tone up some of the flabby bits. As a family we are all trying to eat a lo healthier and have stopped buying meat and fruit from the supermarket and using a local butchers in Grange town called Stirks instead. Their meat is the best and so are the prices so it is not just healthier but cheaper, always a bonus. we have also stopped buying so much processed food from the supermarket as well as changing from their bread to fresh baked bread . All of this seems to have helped my IBS a lot so another win win situation. Weight loss isn't great bu it is starting to decrease. The worst part is working out what is due to being unhealthy and weight gain and what is down to swelling from IBS, Arthritis and Fibromyalgia as these can all cause drastic weight gains. Add into the mix being in a wheelchair and pain killers and its not a good combination.

Only five weeks after the Easter break left in my first year at University and I cant believe how quickly it has gone ! I have enjoyed my time at Sunderland College (with it being an extended degree of 4 instead of 3 year the first year was at college), it has been a little disappointing in some aspects,. Definitely the best thing I have done but a bit disillusioned with it as not all that was promised or expected was delivered. But so excited about moving onto campus properly come September ! After speaking to my tutor it looks like if I keep up the hard work over the next 3 years then I will be heading for a first. So if you are sitting out there reading this, disabled or not, wondering if you could/should...just stop and do it !! you will be surprised how much help there is out there and how much you will enjoy it. Personally I have learnt a lot about myself in the last 9 months and found things out about myself that I never thought I would be capable of after my amputation.

Still counting down for September and Disney and have managed to get out socially with friends the other week. This was the first time in nearly a year. I plan on doing it more often, like I said before the amount of confidence going to University has given me is unreal. I released that I CAN do these things and I SHOULD enjoy myself just like everyone else and I am NOT an inconvenience ! So seeing as it was far and few between occasions off I went to the beauty salon. Can I just say how the hell women put themselves through that torture every week for those single eyelashes is beyond me! I don't know what was worse getting them on as it felt I had been blinded or taking them off. It was all worth it  though I felt like a million dollars and for once was happy with my body image, something I haven't been in a long time.
I have also been inspired to apply to more casting agencies, so that is what I have done.  Having had a screen test for a movie I released it wasn't an experience that most people will get and I loved every minute of it. I may not get the part but what a story to tell the grand kids.

So I guess overall just like spring I feel like I have been given a second lease of life. Another chance not just to plod along but to actually apply myself and do things I enjoy, experience things that prior to the amputations I wouldn't have dreamed of never mind now, just live life to the full and damn the wheelchair and no legs. My kids see me living life to the full and not letting things such as no legs hold me back then hopefully they will relaise   that in this life anything is possible, never give up and dreams can come true if you work hard.This is the legacy I want to leave. I am not saying its going to be easy. I am not saying am not going to have set backs or issues. Hell I could be on a total downer tomorrow and sit and wonder how much more I have to take and why me. The point is..eventually... the good days will out weigh the bad ones. It just takes time and a whole lot of hard work.

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 Moving on

So we are nearing the end of January 2014 and again things have moved on.

College/University is still going well and still achieving outstanding in all areas bar math, but its math, that can be forgiven and after all it was still a pass.

Thoughts have changed on which area I will specialize in as would like to combine CBT/ behaviorism with Psycho dynamic approach. With this in mind I have been looking at studying either a Masters or PHD. So this summer I will be looking for a placement to get experience in a therapy setting.

Since my own CB therapy I am refusing to let anything stand in my way or my dreams. This I have found is a difficult thing to do when you are disabled. You get so used to people telling you that you can't do this and you can’t do that and before you know it you believe them. Challenging that assumption is a hard road to walk (or wheel!) and it is so easy to sit back and believe them and give up. But if you did that look at how much you would miss out on.

To me the most difficult thing I have ever had to do was challenge that belief, accepting that this might be as good as it gets health wise and moving on. Although I enjoyed working prior to the amputation and in some respects after as well, dynamics do change when your disability is no longer something that people don't notice. You feel a burden, inconvenient as if you are getting special treatment as people are too scared of being labelled with disabled discrimination. It leaves you with a bad taste in your mouth. Always wondering if you were employed for your skills or because they were too scared to tell you were not good enough for it. Or was it the simple fact that they have to be seen as being diverse? Are colleagues helping because they want to or because they have too? in some respects it is more daunting going back into education as not only do you have all of this to contend with but the fact that the majority of people you will be mixing with have not had experience of someone in a wheelchair or an amputee with no or very little life experience behind them that will enable them to deal with it. In fact looking around college some have barely got out of the stage of getting pocket money and worrying about makeup and what you look like (which can cause issues as neither prosthesis nor a wheelchair are high item accessories!...I think I will take the pimped wheel chair this morning with the bling in purple because that's what’s in style this week...). But somehow these people seem to have more insight and more patience so there is hope yet for the human race. There is no second guessing about what people think as they are just as insecure as you are.

The results from the sleep clinic came back and I have sleep apnoea, so no surprise there. However this is at the rate of 40 times a night that it affects me which is really high. So I now have a CPAP machine to use at bed time. Apart from worrying it will give the husband a Dearth Vader fetish, it seemed to work well last night so lets see how things progress with that one. Still battling with the weight issue. I did do very well at Xmas and managed to not put on any extra weight and I have made myself a spread sheet for stats (btw passed IT module 95%) that I am checking every day. This is so I can control my own exercise and diet as at a glance I can see how much or how little I have done in a week/month but also how well behaved or what areas I need to sort out for my eating. AS for the split in the stump I have found some dressings that protect and cover so using those and it is working. Also I have had my appointment through for my MRI scan in two weeks so see what happens there. 

Looking to the future, there is not long before the experience of college is behind me and I face my next challenge of being on campus. Hoping also that the CPAP machine helps my energy levels and fibro and I can then exercise more which in turn will enable me to lose the weight I need. That’s when the real challenge starts. Can I leave the wheelchair behind or is it part of me for life?