Remaining Positive and Upbeat can be Hard !!!!

Not wanting to be negative, and always looking for the positive aspects of my " new " life, now governed by a chair, I begin this blog with a new realisation of the frustration and perhaps realisation of just how restricting it can be to live life without legs !!! I will post pics on FB - as we still cannot upload to blog site.

London celebrated Pride Day . And for reasons of my injury, I've not supported the amazing event for the last three years, and arrange to meet friends there. With current rail works and various underground upgrading programs, my journey requires some missioning and planning to get there, coupled with road closures, no bus service etc etc. Meezie and I set off to Waterloo, with the intention of making our way to the South Bank, crossing over the river, up the hill into the heart of Soho !. Well....... Not to be !! It's summer, beautiful weather, the city is teaming with people out and about enjoying the seldom seen blue sky's - baby buggies, smiling faces and the usual summer tourists visiting this beautiful city of London. You might have seen my " bitch fit " on FB, about this, and the accessibility issues I had with broken lifts, closed roads etc etc etc, rendering the inability to actually get there !!! Totally unacceptable, but have " sucked it up " am over it and have things in hand to ensure it won't happen next year !. If ya can't beat them,.... Join them !!! So...., I called up the organisers, and listed to have a float in the parade in 2017 !! Going to need all you guys in the same situation to come forward and help with a fundraising / team to pull it all together !. This WE can do...........


Although being very realistic, and really not wanting to alter universal tilt space,I can happily say that the awesome foursome gang is working so well !! The relaxed atmosphere, total respect and ongoing banter between us all is a seldom " achieved " scenario. One needs to make it happen and that's exactly what I've done to achieve a balance in my everyday living. Now, the next step is to take complete control of my ' Ongoing Health Care ' budget from the council, which they are happy to do, enabling me the freedom of choice to obtain and regain as much independence as possible. Bring it on !!!! Will also post video's of muscle tone improvement and mobility, through continual daily excersizes and FES stimulation. Dianna- Bella introducing various new stretch excersises which sees me in various rather contorted positions, but are working wonders. Not to mention her acupuncture sessions which have seriously reduced the neuro pain to my " one and only " - right arm.


As much as I've tried to deny it, one loses ones confidence with SCI, and if I look back at life prior to injury, and the confidence one is left with post injury...... Well..... We have to rebuild it all over again. The body changes, not for the better - trust me !!, the constant fatigue, the " belt height " existence, not being able to jay walk, running for the last tube, etc etc etc and worst of all the constant ' apologising ' for holding lines up, getting through doorways, to name but a few....... But, having now accepted this lot ( for the now ), I'm working on the emotional rebuilding of confidence, can do attitude, and WILL scream and shout to be heard as a person rather than being labled as a " disabled " being !!! It really pisses on my battery when you get to a lift queue 10 deep and 8 out of the 10 are fat, lazy sods, too lazy to take steps and escalators as the way out !! I have my say..... Ask, and embarrass is my new motto. It was only a week or so ago that I was at Waterloo station trying to get 1 floor up in a 8 deep line. The majority, abled bodied, fat arsed people, nibbling on Pringles and cupcakes - NO GO !!! Honked the horn, pushed to the front and asked why they don't take the escalator or stairs ???? Seldom, any effect, less so from the perfectly fit youngsters who pretend they don't hear or understand - so I let the overcrowded lift doors close, and look up at one of the gang and simply say " don't you find it f@@king embarrassing that we've had to wait for a lift and 90% of the people in here are capable of standing on an escalator ?" You can feel the embarrassing atmosphere !! And then to top it, if there are various levels, I'll push all stops, knowing full well which one I'm getting out on - but when we stop at the first, I announce this is mine, and half the lift has to exit in order for me to get out..... And halfway through the door I simply say " oh no, not this one " offering no apology, feeling no embaresment, and relishing in the frustration of the rest of the occupants !


As you guys know, I've taken to antique markets, boot sales, charity shops and now dabbling in recycled furniture dealings. A great source of interacting with the public and as I've realised - making new friends. There's a small, but very interesting antique market on a Friday, not far from me. On my first visit, I was immediately attracted to a stall that had rather unusual bric-a-brac type antiques, manned by a completely " out of the box " guy, mixed dress style, friendly, intelligent, witty and totally embracing ! And a complete flirt with the ladies !! He just wants to take Dianna out on a date. So I get chatting with him and he asks me what I'm looking for ?. " knobs ", I answer............ Well say no more........... Far to crude to be divulging how the convo went, but did clarify that they were for drawer and cupboard doors. As the weeks have passed, Benjamin and myself have become quite friendly, and in passing he mentioned to me that he had bought a hearse ( yes, a dinkum fully fledged body carrying hearse ). He explained that he could get his stock in, park anywhere and have peace of mind of no theft !!! I thought he was stringing me along until he offered to show it to me ! Do look for the pics on FB.


So.... With my warped sence of humour, I asked him if he would be prepared to drive me into the middle of Soho one Saturday afternoon to meet friends - in the hearse of course !! He thought it was an outrageously great idea, and agreed. Can you just imagine the stares !!!! Gonna do it and will take loads of pics.


As for my health, and well being, I cannot complain !! At the end of this month will be my two year anniversary of my release from Alcatraz , and November marks my third year since my injury. The frustratingly slow progress, coupled with the endless periods of no improvement continues to instill a zest to keep up the daily physical regimes to keep my body at optimum functional level as possible given its state. It is now very apparent, and was explained to me at the onset, that I have completely lost all function in my left hand. As it has started to now claw quite badly, and have no response to electrical stimuli, my consultant, physios and OT at Alcatraz can offer no further treatment. It's been agreed, and I have an appointment early September with them and the surgeon to consider surgery to sever the tendons and muscles to avoid the disfigured look of a claw like hand. It's not about being defeatist, but rather about being realistic, which I have processed and am totally comfortable with. I'm not giving up on my recovery, but sometimes we need to sacrifice a bit of what we have to concentrate on improvement on other parts of our beings.


So following the correct channels, in order to get the go ahead I had to speak to my shrink. All the usual questions..... Do I feel anger, anxious, depressed, hard done by........... For having another " thing " taken away ? I had, and have thought all these emotions through, processed them, meditated, you name it !! And NO, very definitely none of the above applied ! In my opinion, it's all too easy to blame " life ", and what life has dealt us ! Take a step out of the equation and look at it from a different angle - What does " life " want from us ??? Do we give life any justice ? do we give life any credit ? Do we ever ask life what it wants from us ??? No, most of us never think about it do we !?? Ok enough lecturing..... But do think about it !!


Just had the most exciting two week visit from my sister Caryn, from Auz. She hadn't been to Lnd for almost 25 years so we did loads of sightseeing, marketing, eating and drinking. Don't know which one of us was more exhausted !! I think I kinda shocked her with the outspokenness I've inherited, my homeless buddies out on the streets as well as gnawing on dog biscuits on the tubes !!! What fun, what fun !!.


Well, good people, will blog again soon ! Sent with love and ongoing good health wishes ! Remember, embrace life, and give it what it wants !!! Later..
Gav