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Sunday, 20 March 2016

THE FAST AND THE FURIOUS

Nearly at the end of March already, who would believe it. I still maintain that this year will be my year for things to work and the last two month has just been a practice run. Guess we will have to wait and see.
As you are aware if you have been following my blog ( and if you haven't why not? get reading now!), This year has not had the best of starts. However three month in and things may be slightly starting to improve.

Caught up with University work and came out with a first for my Academic Mentor presentation which was great and after my personal development meeting, found out that I might not be as screwed as I thought I was with moving on to the final year. Although if all these health issues and my dads issues had not had to be dealt with what kind of grades would I be clearing? So it is with extreme caution that I apply for my final year of finance for my degree. But what comes next? For most students this would entail a masters or PHD or perhaps getting a job, but what about some one with chronic health issues such as myself? What do I do?Well I guess that is the question isn't it. Like so many others out there in the same situation (OK I admit there are people out there who do take the piss), I really want to work, even if its part time. Here is the problem, even part time I know there will be more times spent off then in and looking at my health issues most employers will take one look at me and will pass me over nor have the time, money or patience to put up with it.
So that leaves working for myself, but what as, how? The Psych Twins was supposed to be the start of that the whole, if Mohammad can't get to the mountain then the mountain will come to Mohammed thing, but with out grants/funding and being able to get contracts its all pie in the sky, a great service I keep getting told, that is greatly needed, but no money to do what we want with it, pay ourselves a wage or hire others.

So where dose that leave me? Well back at the beginning, on ESA, unemployable despite all my skills and training, just take a look at my CV (go on take a look you will find it on my LinkedIn Profile), despite the outward appearance of a withered, useless body ( I sometimes see myself as a female "Jabba The Hut" ) there is a mine of pure knowledge, skill and enthusiasm just waiting to be tapped into. This then leads to the "what's it all for then?" phase. The point at which you relaise that you are of no use, not even to yourself. You need help at home, help to go into education and help to hold down a job (if you could actually get some one to give you a chance) and the government is slowly tearing that all away from you any way.
This then moves into the "isolation" phase. As some one who has numerous illnesses/ health issues, going out socially is not a thing. Even if I had any one who would offer me to go out socially there is the accessibility of the venue and how good or bad am feeling on the day. ( All the offers of being invited places, even by family and friends dropped off after it became apparent that to invites some one out who has to use a wheelchair 90% of the time is just to darn pesky to organize. Especially if it means that one of you have to be responsible for helping said person and good god you might have to change the venue/pub route/restaurant to make sure its accessible etc etc ...you get the picture). So if you take going to university away, I leave the house once a week with my husband...maybe to look around the shops and any drs and hospital appointments. What does that mean realistically? If am lucky I will get out once a week maybe once every two/three weeks. WOW exciting life !

This then leads into the final stage..depression. yep. What more can I say about his phase, well nothing really, its all been said before. You can't see anyway out. Nothing is going to get any better, because there is nothing you can do to make it any better. No diet, exercise regime or will power is going to change those illnesses so you can go out to work, therefore get out more socially, have money to enjoy life, get  mortgage, move up in the world etc etc. No way of being a good little citizen just like the government want you to be. So you are labeled a scrounger, a waste of space, useless and society look down on you, and the government? well they just keep taking benefits away from you making it harder and harder to function on a day to day base, telling you to "get a job" "loose weight" "exercise" "this is how to improve your life and your credit"..we know! but we can't can we no one will let us.

Money wise, am lucky my husband runs his own business which ticks along for us, so things don't effect me as much as some people I know  - disabled and non disabled. I would love to go back to work, hold down a job doing something I would enjoy, bringing home a wage and getting off benefits. I dream of getting  a mortgage and owning my own house, done out to my specification no expense spared, holiday every year never mind twice a year instead of saving for 2 year to go away for  2 weeks (meaning no treats for the kids, no weekend breaks as a couple, no date nights, no family days out, no new clothes , going no where during the summer holidays etc etc).... and yes for those out there who follow my profile on Facebook I save to go to Florida and am well aware there are people who cant afford a weekend away, I did say am lucky.......to have more of a social life with my family and  friends rather then wondering if am getting out the house for an hour or two in the next 14 days.

Who knows maybe things will turn around. Maybe funding will come in and I can finally get The Psych Twins off the ground the way I want too and make a wage that way. Maybe my health will improve and I will get a job or there is some employer out there who will let me freelance as a writer or something and come in when I can for a wage.
Maybe I will become a tv personality and be on political shows and news program or have my own show. Maybe I will become a famous author. Maybe I will get the acting offer I cant refuse because of my unique physique as an amputee. and matronly and northern..yea OK the least of the lot to come true. All I do know is that I will keep on trying, wishing and dreaming. Oh and am getting an electric wheelchair ! so bright side I get to any future Film and Comic Conventions I can play a Darlek....

......................Que Dr Who theme music.........

Sunday, 31 January 2016

IS THIS THE LONGEST AND WORST JANUARY EVER?

Being an amputee one of the biggest issues I have apart from not having access to places is the weather. I wasn't steady on my feet before but now that I have what effectively feel like stilts, its a whole lot worse.

The main issues are rain ( living in the UK is 80% of the time), ice/frost and snow. Apart from the issues of the cold causing problems with the joints due to other health issues I have, this weather turns me in to a virtual recluse or risking a serious fall. Because I do not have a flexible foot or ankle and the prosthetic comes up to my knee cap, it makes balance and bending in them very difficult.
The weather since Christmas has been all over the place. High winds that caused issues with balance and asthma for me, torrential rain which meant a huge chance of slipping every time I went in doors, snow which means no outside at all, and now the media is telling us that it is all to start again with server snow due to it the UK.

As if already having a list as long as your arm with health issues isn't enough it looks like more will be added to it this year as mentioned in the last blog. I am struggling with university already and as well as missing  a second deadline now,  we have only been back a week and have already missed two days being in for lectures, with more to come due to all the appointment's I have coming my way. Dad is having money going out of his account with nothing to account for it as due to the dementia he is forgetting to pay his bills. this is going to mean more appointment's with social services ( for what good it will do).

So as well as struggling with my own demons (my depression, which is not uncommon for people with serious health issues or amputations to battle with), my health issues and university but I have my dads ill health to deal with and lack of control of pain. I can't speak for other people who are disabled but the hardest thing I  am finding at the moment is trying to do what every one else takes for granted, sometimes just keeping my head above water is a struggle. Being disabled to me means having to work harder to be "normal" like every one else. Things I used to take for granted and most of you still more then likely do, can be the biggest struggle for me.

Just getting up in the morning is a battle. Moving to sit up and get out of bed can be so painful it makes you cry. Getting ready can be a struggle so you need someone to help getting things on or off. Don't even talk to me about the shower ! The act of showering and the pressure of the water on my skin can sometimes be so painful that just having the show can set off a major fibro flare. Not to mention dropping stuff on the floor or things out of reach you just cant reach as you have no balance to do so ( weebles wobble but they dont fall down....unless you have no legs on and reach for something and go  face first into the floor ).  Then we should talk about the holding cups, forks and dropping everything, pins and needles in the hands, not being able to pick things up......the list goes on and I still push myself to attend appointments, university, sort out my dad and working on The Psych Twins. Can't wait for the new additions from the things am waiting to hear about.( thats sarcasm by the way, just in case you missed it).

These are what I suffer from at the moment :
amputee with phantom limb pains and nerve damage
Fibromyalgia
sleep aneapa
chronic fatigue syndrome
Arthritis - rheumatoid and osteo
rynalds
circulation problems
IBS
depression
and waiting on news about heart and cancer......I think thats everything, comes to something when you cant remember everything you have been labeled with.

With everything going on with me and my family, the amount of famous people who are loved by society dying, the news is full of death, disasters and the government screwing us over even more,but trying to stay positive so looking forward to what is to come this year.

The Psych Twins will be attending Walker Stalker in February to do reviews for access, Newcastle comic con reviewing March, Hero conventions in Edinburgh in April reviewing access, Asylum 16 and City of Heros 2 promoting ourselves in May, Metro unleashed promoting ourselves in June and Screen Con in Tynemouth promoting ourselves in July and as long as there are no more financial disasters the main thing am looking forward to is my  three week holiday to Florida in the USA.

so even though reading through the list of aliments I have makes me wonder how I function or even get up at all, I still have things to look forward to. Now if I could just work out how to stay upright in the snow.....


Sunday, 24 January 2016

HAPPY NEW YEAR !... CAN I START AGAIN?

January is the same every year. No money , nothing to look forward to, dark nights, grey days etc etc. But people every where tend to make the same resolutions, new year new me, starting the gym, stopping smoking, going on a diet and my personal favorite, this year will be better.... well am still waiting. I have decided to put January as a trail and the New Year for me doesn't start until February,
( knowing my luck though this will persist until June or something and I sill be putting the previous 5 month as "just a trail").

As soon as the clock chimed midnight on the 31st it all went to pot.
Dad kicked off.
Stress levels through the roof
Arguments
Health issues escalated
And I ended up missing a deadline for the first time ever !

Dad was refusing his carers which resulted in more arguments between him and my sister, leading to my sister being more stressed out. On top of this he was forgetting to pay his bills becoming more and more in arrears with his electric and gas. He was refusing any form of personal care or hot food and decided to rip the telecare monitor out.

Thankfully I have managed to get his social worker to do a review of the services and he has agreed to paying his bills by direct debit which am arranging for him, the telecare has been reconnected ( although he is still refusing to wear the call button, but small steps.) and he has agreed to keep the carers for the morning and night who will help him with the porridge for breakfast and a sandwich for his supper. Still not winning on the personal care front but I am grateful for the small things at the moment. The one thing through out this that has really annoyed the hell out of me is the way that so called "care professionals" talk to the elderly, vulnerable and disabled. I noticed when she was talking it wasn't too my dad but at my dad, which I thought was horrendous and extremely disrespectful. He may have dementia but he is still a person. Whilst she was talking about him to his partner or to me it was if he wasn't in the room. His whole body language was sad, defeatist as if to say " I may as well not be here, no one listens to me". That got me thinking about how people talk to me. When am in the wheelchair, which fair enough is most of the time now, I get talked at or instead of asking me a question they ask who ever is pushing me, as if am invisible There is also a difference from when am in the wheelchair and out of it. I don't get talked at but I do get talked down to, as if because my legs are missing somehow this included my intelligence and being to understand anything. Talking to my sister the other night on the phone and she mentioned something similar. If her partner mentions that she has had a brain tumor or surgery people treat/talk to her differently .
Why?
Is this just lack of training on behalf of the professionals, or do they just become so worn down by seeing the same thing day in and day out that it is robotic and automatic? Is it just human nature to look down on the infirm and the disabled, see them some how as inferior, less then human. Is it a simple case that evolution dictates that we over look these people or try less as there is no gain, the genetics are faulty therefore we are over looked? ( see, told you I was studying psychology).

The cardiologist went well I thought. Heart trace was normal and no sign of a murmur and he is pretty certain that it is nothing linked to my talipes, ( people born with talipes can sometimes also have muscle issues in their legs, hip issues and/ or heart defects/issues). However it could be something called egtopic heartbeats or A.F ( arterial fibrillation?). So to rule anything out I have to have three tests carried out. One is a heart monitor for 72 hours, a echo gram of the heart and a ultrasound. So its going to be a few month of waiting before we get any final results. This of course means more stress and worry.( I do sometimes wonder if this might be payback for me labeling the heart the opposite way round during my physiology exam two year ago?).

Got the pain clinic appointment coming up in a few month, but to be honest do not see the point in going. Pain clinics tend to look at alternative ways of dealing with the pain to be used in conjunction or instead of pain killers. Tried them all before, didn't work then will not work now. So its back to the docs to look at upping the meds. Can't wait to see what that leads to !

Then to top things off, just as I thought nothing else could be thrown at me this year never mind this month I received a very unexpected letter. I have to go to the Northern Centre for Cancer to have genetic screening done. well, blow me down, ( trust me I said worse then that but am trying to keep this a 12 PA). So this will mean months of tests and waiting to see what the out come is. All of this just in time to return to university after the Christmas holidays for exams and deadlines. Not sure how this is going to impact on things or if I will even complete the degree .

Watch this space!

( I swear I should write a bloody book ! only problem is it would be put in the fiction section as no one would believe it. Soap operas have more realistic story lines then my life).