NEW START - NEW ACADEMIC YEAR

Back to University next week.  Getting broke in gently as there is only the welcome back meeting on Tuesday for an hour, but there is a catch up with the Thinking Ahead group. This is the group I joined last year that raise funds and awareness for Student Minds, also the reason I shaved my head if you remember. The only thing am not looking forward to is breaking in a new support worker who will help me get around Uni. Hoping she is not set in her ways or used to patronizing disabled people or the next year will be explosive !

Then its back to nose to the grindstone the week after as we get into full swing with our second year on campus. Still plenty of other things to keep me busy as well such as marketing and selling the Halloween Masquerade Ball tickets for the 31st of October https://www.facebook.com/events/417935758373799/

On top of this there is the decorations to order and the itinerary to sort out of who is responsible for what on the night. All of this on top of still having to finish up my CBT diploma I started half way through the holidays and being invited down to Merseyside to be a director with another charity and help them with their fundraising. Add to this that I have also applied for press passes for The Amputee Diaries to various comic cons and events, including in the USA, means that am going to be a very busy girl !

I am hoping to do more reviews for people who have disability's as I strongly believe that being disabled should not stop you from living life to the full. More venues and events are now aware that these things need to cater to every one, but don't always see the world from our perspective. They may think they have covered every aspect of the event for disabled people when in fact they are missing things, sometimes little things, sometimes HUGE bloody things and that is where my reviews come in. Not only to help people but also planners and businesses to address these problems, be more inclusive and in fact increase their revenue stream, audience and fan base. In fact since losing my mobility pretty much, my health getting worse, nearly dying during childbirth with Toyah, my dad being diagnosed with dementia and my mam dying, I have came to realize that life is just too short to worry about what people think and waiting for the right time to do something. Hence cosplaying and all the trips to Disney.

We are still waiting for social services to arrange visiting my dad to assess him for help due to recently being diagnosed with dementia. Since the diagnoses we have pretty much been told that we will have to fight for every scrap of help we get. Typical. It is so frustrating being stuck in this chair sometimes, feeling useless, watching people you care about needing assistance and help and knowing that there is absolutely nothing you can do to help and feeling that  you are no use at all.

This got me thinking about being a parent and disabled/wheelchair user. The issues it brings I think are unique, something most people will never experience. The first thing you notice is how much you have to adapt certain things to make them work. The next is how much you actually relay on your children for help. Basic things such as house work, doing the washing, cooking sometimes getting clothes on or off depending on if you are having a flare up at the time. My mind though I can keep active which am thankful for. Hence the reason for the charity and uni I guess.

 I am no longer interested in possessing things, but in having experiences. The bigger the better. Life does not have to be over just because you have suffered a tragedy in your life. Nor does it have to be over because of your age, after all its just a number, just like your tragedy, disability it does not define who you are.
People often forget to stop and take in the beauty around them, see the fun in most all situations and live life every day as if it is your last. Take chances, have fun, don't be scared to make a fool of your self ( hell I do that all the time that I don't even need to practice it any more ). But then again it has taken numerous tragedy's in my life and 46 years on this planet for me to do these things. Its not something that comes naturally to us but needs to be learnt, just like every thing else. There is no book on this, you can read as many books around this subject as you like but it will never enable you to do these things or be this way. That, am afraid, is down to you and you alone. In fact I think the more gadgets and tech we invent to make our life easier just clutters it and makes it busier. In fact I think people or trying to use so much tech and gadgets these days to free up time that they have less time then they did before !

Sometimes I think it would be fun to write a book based on my life, the husband thinks I should. But honestly I don't think any one would buy it as it would seem so fantastical and unbelievable. The things I have been through, the things I have done and seen. Hell plot lines of soaps  or more believable then my life some times. This summer alone I have :
Started a charity
organised and event
got donations for prizes
received press passes for a film and comic con
interviewed Chris Judge aka Tel'q from Stargate

interviewed Gareth Lloyd Davis aka Yanto from Torchwood
interviewed Doug"Hacksaw" Duggan from the WWF
Spoke to Michael Bien from Terminator
Spoke to Robert Enguland from Nightmare on Elm Street
Traveled to Glasgow
Done a diploma in CBT
bought a new car
been in a local newspaper
soon to be speaking at the local college to new Psychology students starting the extended degree course
went to a VIP event
had business cards done
had a shopping trip away
applied to be a zombie
got involved as a possible director for another charity
reunited with my dad and sister........and that's in 4 months imagine what I have done over the last 46 years! Some highlights are - insulted Eric Clapton (in my defense it was an accident), lived in a hotel suite for a month, been put before Westlife, drank with Bobby Robson, did a screen test for Matthew Vaughn for the film Kingsman.........

See life is not over, its only over if you let it be.

People look at me and see an overweight, middle aged women who is in a wheelchair with no legs. If they only knew......:)

(If anything in this blog or the other blogs have effected you and you would like to talk to some one please feel free to get in touch.)

FROM THE HIGHLIFE TO THE LOWS IN LIFE AS WELL AS THE GRITTY BITS.

And the world moves on…

 

Just had some devastating news regarding my dad this week. He has been diagnosed with mixed dementia, which is both dementia and Alzheimer’s disease. It’s aggressive and already at the stage of forgetting who we are, to eat, take medication, change his clothes etc, not to mention the mood swings and how he can sometimes be verbally abusive to my sister.  The doctor at the specialist clinic was so off handed about the whole thing when giving us the diagnosis and the way he spoke to my dad was if he was rubbish or not even there. He offered no support, medication to help with his anxiety and nowhere to turn to.

This got me thinking about how I was perceived by these people. The feeling after seeing this doctor at the specialist clinic, who when I started asking questions regarding his brain scan, demanded to know who I was and if I was in the medical profession and how did I know this information,  was very much that I had achieved or done very little because I was in a wheelchair and disabled. By the look on his face it was obvious that he had wrote me off being in a wheelchair. The look of amazement and shock on his face when I told him I was at University studying psychology was priceless! Needless to say his attitude towards me changed but not towards my dad.

The same thing happened with his GP.  Even though I was the one asking the questions and talking to him his whole body was turned away from me and all answers where directed to my sister and husband. This is extremely annoying to say the least. It also seemed to infuriate him that I could use the same language has him. This resulted in him picking up on any mistake I made about dementia or the brain even though I told him I did not know anywhere near enough information to understand what was going on completely, but that doesn’t mean I can’t make educated comments or guesses.

At this point I also started to wonder if other people with disabilities got treat the same way from so called “caring “professionals? I can never remember being treat like this before the amputations or pre wheelchair use. But this brings me to other small things that I have noticed but hasn’t really hit home before now. Such as automatic doors into places. You have them working or always open but have you noticed that if you have a pram or someone in a wheelchair you are the one waiting for other people to finish using it and wait for them to let you through? There can be 4 or 5 other doors for people who are able and capable to go through, but no, they would rather que, tut and moan and wait for you to get through, force their way through WHILST you are trying to go through, my personal favourite…quickly jump in front of you or step over you to go through ahead of you instead of thinking to themselves “ wheelchair/ pram coming through I will just use my hands and arms to push another door open to go through. What is even funnier with this is the look they give you as you are waiting on them to finish and let you through, it’s as if you are shit on their shoe or an inconvenience to their lives somehow, that’s if they can even be bothered to look at you. Some prefer to pretend they are not ill mannered or ignorant by looking straight ahead and not even acknowledge you are there.

Then there are the problem solvers. They can be a stranger, care professional, friend or even a family member. The ones who will try to fix everything when all you want is for them to listen, believe you when you say you have tried and maybe understand a little.

 Let’s face it, no one will truly understand what it is like to live with your disability on a daily basis or what you go through just to do something that before, or other people take for granted. I wouldn’t wish that on any one, but trust us, if we say we have thought every which way to try and do something or we tell you we can’t do something or something won’t work, or even if it’s a case of we have a hang up about doing something so we don’t want to do it, please, believe us, its true. Although you mean well and are only trying to help by finding a solution you’re not. All it does is infuriates us (well me anyway), makes me feel useless and as if am trying to get out of whatever “it” is. It also makes us (and again by us I mean me) feel like more of a nuisance and/or failure when we do try your “fix” to the problem, even though we have told you it won’t work, and fail, because guess what?....it wasn’t going to work like we said to start with.

My husband is a fixer and God love him, he really try’s to work outside the box so I can experience and do what I want to do. Sometimes he comes up with things I have not even thought of trying or considered, which is great! But other times he goes on and on trying to find a solution even when we have exhausted everything logical and inventive that won’t humiliate me or end up hurting or endangering my life. It just he is so focused on trying to find a solution for me because he wants me to be happy, that he doesn’t see when it stops being helpful and becomes painful or upsetting because he is going on and on about it. At this point it just feels that it is being hammered home over and over what I can’t do and am useless.

Until just last week he didn’t understand why it would upset me after a while of looking for a way around something. When I explained it to him he told me that he knew it upset me when I couldn’t do stuff I wanted with the family and all he wanted to do was make it so I didn’t miss out. What he hadn’t realised is how much it could potentially upset me when there was just no solution to be found and he kept trying to fix it.

Maybe it’s just me. It wouldn’t surprise me really. I have always liked to be different.