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?

FULL STEAM AHEAD

Another 5 month have passed since I last put anything down for you.  Its now the beginning of December and I have now been at College for 2 1/2 months.......and I LOVE IT !!

I promise I will try to update this blog every month with what is going on in my life, difficulties I have experienced and help I have found or help I have had that worked for me.

First things first, still no further forward with getting out of the wheelchair. The cold weather is playing havoc with the arthritis and the fibromyalgia. The weight gain has slowed down but still not good, so I am personally not very happy about that. I am still experiencing issues with the stumps splitting and it is the same one that splits all the time. It has now happened twice more since my last entry. I know it is due to the legs swelling and the weight gain so the plan is to try and control this. So although we are only 23 days away from Christmas, I am going to restart the exercise routine and cut out the snacking on a night time. Yes I will indulge during the three days of the 24th 25th and 26th but that's OK as long as it is controlled, and that is going to be the key for me control. Went to a seminar about weight loss surgery which was recommended by my GP but it scared me silly, the risks where way too much and the surgeon didn't even think it would benefit me due to the Fibro, so I don't think that is an option for me. Although any one who does go through it is brave in my books.  The results are due from the sleep clinic in a few weeks so will try to update the blog with that before Christmas and still waiting for my MRI to take place.

And that is where we are up to with the health situation..now for the good bit...my life.

Can I say the best thing I ever did was leaving the rat race to go to University.

I am doing a extended degree in Psychology through Sunderland university, the first year is with Sunderland College. As a disabled student as well as a wheelchair user, the help I have had form both the college staff, lectures and the University has been outstanding! The support as well, that I have received from the DSA of student finance as well has helped me so much am extremely grateful.  They have provided me with the equipment to enable me to actively take part in all the lessons and the ability to complete work at home as well.
 I will be honest I was really worried about going to University/college as I was nervous about how much I would stick out like a sore thumb, or how much trouble it would be for others to include me,even how much disruption I would cause to the lesson. Questions such as "would i be left on my own?" "would any one want to mix with me or even do projects together?" " would I be seen as an outsider/ inconvenience?" " would people talk to me and accept me for who I am?""would I be nothing but a nuisance to people? "
Its bizarre the way you think about yourself or see your self when you are in a wheelchair or have limbs missing, its like a double whammy when it is both.  But all the worry was for nothing. Don't get me wrong not everything has ran smoothly, there are a few issues with doors for example and some kerb heights, getting under some of the desks  are a bit of a night mare and some rooms are so small , forget about a turning circle!  And if I have to leave my legs off and use my stump boards then college is just a no go. Hell I even had one of my foot rests ran over by a taxi driver..twice! guess the first time he wasn't certain he got it.  I guess there was a chance that all my fears could have been founded but it depends on how you want to few things.

 Just before starting university I was having a course of CBT (cognitive behaviour therapy), which helps you to help yourself. Basically it changes the way you few the problem or issue and how you view it, makes you challenge your view point, then gives you the tools to deal with it in future.  At first I thought it wasn't helping, but after a few sessions things changed in my head, and I realized that my view of myself and how I thought people saw me was skewed .
 Yes, OK there is going to be people out there who are ignorant gits, who do see you as an inconvenience and should just go away, but thankfully they are few and far between. They will be a certain amount of changes that will need to be made to include you, but that's OK, you are entitled to access the same as everyone else and most people understand this and are patient. Those that aren't, screw them, take longer just to annoy them lol. The point is that is their hang up/problem not yours and don't let them put their hang ups onto you, after all their not out of the race called life yet and who knows what the future holds.

I guess what am trying to say is don't let anything hold you back. If going to work or college or university is what you want to do then do it. There is support and help there to access such as the DSA (Disabled Student Access) through Student Finance, the college/University or work place itself, also if it is work connected there is the Disability Advisers at the job center and Access to Work who can help with everything form transport, office equipment and grants your employer may be entitled to, work place evaluations as well.

On a personal note things are going well. Still counting down to Florida 2014 and now Christmas. Thank god am all done. As some one who is disabled and in a wheelchair shopping in any mall, shopping centre or town centre is a bloody nightmare !. People seem to suddenly become blinkered, rude and ignorant. On line shopping is a god send.When I do have to go into town at the moment my temper seems to instantly shoot through the roof. Sick of people leaning over me, stepping back into me (although it hurts them more then me but the number of people that I have nearly had sitting on my knee...), stepping in front of me then glare at me as if it is my fault, and my personal favourite, tutting at me..for being there. All the kids are doing well and for the first  time in 10 year I was able to attend two of my children's class assembly's . What a proud mam moment that was.The eldest is doing well at University as well and cant wait to see him when he comes up for Christmas. Had some of my first assignments back and scored 80% for my Physiology report, 49% for my first maths exam, 96% for my word processing exam, 100% for my PowerPoint exam and still waiting for my result from my presentation assessment and my spread sheet exam.

My goal with this degree is to specialise in possibly CBT my self and become a Psychotherapist, all going well after my degree I will be looking to do a PHD as well. So remember if you are in a wheelchair, Amputee, friend or family member of an amputee, even if you are curious and just need answers please feel free to contact me via this blog or my face book page. All links will be put at the bottom of this entry.

https://www.facebook.com/dcphotographysunderland?ref=tn_tnmn

https://www.gov.uk/student-finance/overview

http://www.yourdsa.com/

http://www.sfengland.slc.co.uk/media/559155/sfe_dsa_1314_d.pd