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Friday, 11 April 2014

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.

Friday, 14 February 2014

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.........


  

Monday, 27 January 2014

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?