MOVING FORWARD WHILST LOOKING BACK

Last week was all busy, busy, busy.
The Pysch Twins are going bigger and better each passing day with more and more support from local business. Which is wonderful. The results where posted of our final results for this year at University and am very pleased to announce that I received a resounding pass and proceed onto the 2nd year of campus. This is in effect will be the third year of my extended 4 year degree.
Jo and I have also been asked to do an hour slot talking to the new students in September for the level zero course during their introduction week which is great news and a fantastic chance to get some experience. On top of this we where also asked to take part in the marketing for Sunderland college. We had a lot of fun acting out for the photographer so looking forward to the results of that.

On other good news I was awarded my PIP (Personal Independent Payment). For those of you who do not know what that is it is a new benefit that is taking over from DLA ( Disability living allowance). It has been quite a controversial move by the government to replace the DLA with PIP as the rules governing the award have been tightened. This means that there are now more and more vulnerable  people who need this money to get around in the form of a car on the mobility scheme, who are left without the money to aid in their day to day routine , getting out the house or being able to work. Along with cutting the Independent Living fund , reducing the amount of money available to support disabled people whilst in work and the rumors of student finance and help for disabled students being cut or abolished, more and more people with disabilities are finding it increasingly hard to to get a job or keep it.

You have heard of the undateable's? Well met the unemployable's

That's people like me and people like my colleague. I have so many health issues that I could more then likely fill a A4 sheet with it. What that means is that I may end up having days, like this weekend where I am in so much pain I can't sleep much and barely move. In a normal five day forty hour week this would cause issues and would mean time off work on a regular biases. This doesn't mean that I am past my best before date, I still feel I have a lot to still give . Experience, skills and knowledge.But then you add on the fact that as soon as some one sees you as an amputee in a wheelchair, never mind telling them about the other health issues and medication, they immediately write you off.
Then there is people like my colleague. She has two children one with ADHD and one with ASD. Needing to be available at all times for her children just in case their was a phone call from one of the schools . Then you need to look at the mental health issues we both deal with. Depression, stress, anxiety and panic attacks. Sometimes so debilitating that you can not leave the house. There are a million people out there with the same kind of issues that still feel they have something to give , still want to work.

I miss the days of not needing anything stronger then a paracetamol for a bad head. Being be able to sleep with out a machine to make sure I don't stop breathing. To pick a pen up and write without losing the feeling in my fingers and hands. To not drop pans because my grip goes. This is just some of the joys of Fibromyalgia, apparently brought on by trauma from the two amputations and lots and lots of other operations I had gone through.

Do I regret having my amputations? The first one,,no it give me a new lease of life but then things went wrong and I ended up with the second lot. Do I regret that? .......good question. Yes sometimes, these days more yes then no.There are so many things I miss not having legs/feet. The feel of a carpet, walking on the beach feeling the sand between my toes, being able to walk into the sea, swimming with out aids and hoists. Just anything straight forward like going out and not thinking if there is stairs or disabled toilets. Funny as it sounds, being able to sit where ever the hell I wanted.

I digress. That story is for another time, another blog.  The fact that we want to work is why we have started The Psych Twins. This is a service, non profit and no staff...yet.  we started up The Psych Twins to raise money for local North East charities who get over looked. We are currently working with the Carers Center in Sunderland to raise funds for them by holding a Halloween Monster Masquerade Ball at the Stadium of Light in October.

The initial expense is coming out of mine and Joanne's pockets, which is scary,  so hopefully we will sell all the tickets . Once our costs have been covered we are hoping to raise in the region of £2000 plus for them.

 What we would like to do eventually, would be to open a Center in Sunderland that would offer help, advice and counselling/ therapy free for any one and their families , adults or children in the North East  who are disabled , whether it is a mental health issue, physical disability, amputee, wheelchair user, ASD, ADHD etc. We want to offer  a drop in center for advice such as  whats on in the area that is suitable for them, help that is available that they might not know about or just to  pick up leaflets or application forms for  services or help such as the Cinema card, attending a festival or looking at starting work or going to University. There is help out there but not very easy to find and the only reason I know is the amount of man hours researching it. But we also want to offer kids activities free such as support groups for parents with children who have ADHD or ASD for example where they can come and met and talk to people in the same situation while the children have fun doing activities or party or a sensory room. Support groups for amputees etc again where they can get together with others who are in the same situation and can support each other and not feel isolated. Also offer help applying for benefits etc but also offering counselling/ therapy for those people who need that extra one on one support. 

Its a big dream but we are determined to make it a reality. We want to hold drop in sessions at various community centers which we will fund with bake sales and coffee mornings, then the big push is getting premises to open the center.  what we would like is to get funding in order for us to take on the staff with us that we are going to need to run it and operate it as a business but keeping it a free service for people to access. This would be done by (hopefully) grants, fundraising etc. We want to hire staff who under normal circumstances would be classed as un employable by most people due to their health issues and disabilities, time they might need off. People  who have the skills and knowledge and still want to work but are often looked over due to this.

My life is a bit of an open book lol but I hope that if just one person can see that their life is not over just because of their disability or it gives one person the courage to try something they never thought they could do , or one parent the comfort knowing that every thing will just be fine then Its been a success.

Depending how successful this years ball is, we would like to hold the ball  every Halloween for charity. With any luck getting bigger and better !

....AND NOW WE WAIT

Another week has gone by and another busy time in my life. For some one who is unable to work it sure seems like at times my life is non stop and there is not enough days in the week. However expecting things to calm down now due to University finishing, although there is still the October event to try and organise.

Final exam over with so now the waiting begins for the results. Seems that this month is going to be all about waiting. Did find out that I passed my media piece for Psychology in the media so it looks like that module is in the bag. We do not find out about the others till the beginning of July. Was a bit disappointed with how the last exam was handled to be honest. As part of the help from University I was supposed to be put in a room on my own with my own invigilator, flash drive. PC use, my support worker to scribe if necessary and extra time. Yes I had my own Pc and invigilator but was put in a room with 4 other people. As you may imagine this made it difficult to scribe to my support worker if needed as I would disturb others and they would hear my answers ! Yes I was given my own invigilator but this seemed pointless as they had one in as well for the other 4 people. The multiple choice questions they wanted us to write the answers down which negated the point of having the PC as typing is a lot easier then hand writing for me. To top it all off I had to point out to the invigilator that I qualified for the extra time. Fingers crossed though that this has not impacted on my results. Also found out that not only can I take books out for 4 weeks if they are a week loan but if I take them in to the campus to be renewed instead of on line then instead of renewal for one week I get it for another 4 weeks. Handy to know for next year.
With the summer holidays now here for me this has enabled me to concentrate more on my reading for pleasure and building up the Psych Twins. So watch this space. Although it is so frustrating trying  to get celebs to attend this event but will keep being a grade A stalker in order to get the attention this cause needs.

Tylers birthday went really well. Tyler as I may have mentioned before has ASD and it is mainly a sensory thing. We got a friend of ours to make him a plant vs zombie cake and his reaction was priceless and so unexpected. He sobbed in my arms with happiness! For those people who do not know anything about children with ASD, showing signs of emotion is very rare and for some never happens. So now you can see why this is such a big thing ! Put the cake on twitter and was pleasantly surprised to get responses from POPCAP the game creators and the artists of the game wishing Tyler a happy birthday

. To say this made is day more then anything was an understatement.

Had some fun being a poster child for the college. Went off to Bede College on Tuesday to do a photo shoot and interview with their marketing department. Looking forward to see if they use any of the material. As long as I don't end up on the back of a bus.

The big day came for the PIP review with ATOS. The woman who we saw was nice and she was a general nurse, fair enough of hematology but at least she was a nurse. After answering a lot of questions, some of which where quite degrading to answer and de moralizing, and having to explain in more detail what I had put on my form she finished with asking me a very bizarre question . If I had any pets? Still trying to work out how this is relevant . Answers / suggestions would be appreciated. After being told on the letter that I needed to take all my meds and aids with me (which I could not take all of them btw), Was told that she did not need to see them, Nothing was asked of night time care. She wanted to know if I could make a meal for my self and use the microwave, but not interested that it could only be done if some one else brought the stuff out of the fridge/freezer or cupboards and then carried things through for me or that if using the microwave I could put something in but not take it out again, and again needed some one else to bring the stuff from the fridge/freezer for me. After about an hour of questions she then asked me to move my arms in various ways and grip with my hands. Then it was over. Now I have about 8 weeks to wait to find out if I get to keep my DLA or not. Not that that is going to stress me out AT ALL.

So what next? Well try and relax. HA. Work on The Psych Twins website some more and getting things organised for his event in October. Read for pleasure, although I will be making a head start on next years university reading after I get my results and know I have passed.

 And keep working on my dreams. These are passing this degree, doing a counselling course then off to Teeside to study for my Doctorate in Psychology and counselling for practicing CBT.

I like to dream big.

A DAY OF RECKONING IS COMING

Still have no trainer to get me into shape for the Great North Run in 2016 so it looks like am going to be kicking my own arse for it.
Went to get weighed so I could have an idea of my starting weight . SO not happy! 21st 11lb. What happened? So have bought Asdas version of Slim Fast . finding it difficult but persevering. My snacking has stopped so have the biscuits and coffees ,but yes you guessed it , not so much the crisps which are my nemesis. Not crisps really these Fish n Chip biscuit things, really bad addiction to them but managed to cut down to only having them twice this week instead of every day so YEAH go me!
Re started my physio in a morning as well as light weights for my arms ( apparently exercise is supposed to help Fibro....still waiting for that one to kick in), sit to stands from the wheelchair to strengthen my legs and back. Had my first go on the treadmill as well. Worried I was going to fall flat  on my face but it went OK so starting that from next week.

So what has this last week brought me? lots not all good either. Took part in a study for a student at Oxford University which was really interesting and glad I did that. I have had an article published as a personal story for this blog in Disability Today which is an online site and there is the possibility of talking to new students in the new term taking on the level 0 of Psychology. this is to share my experience of the course, explain what happens at University once you get there, such as volunteering, society's and what to expect as well as doing Q&A sessions with them.
Mikey came home from Stafford University last Tuesday which was great.The kids are really happy to have him home as are me and his dad. Bless at the moment he is relegated to the couch as we have no room for him but when the summer holidays start anna is giving up her room for a while for him. Tylers SATS went well and he quite enjoyed them..strange boy and Anna has her prom this weekend so handbag and shoe buying was on the cards this week as well as booking the salon for her hair and nails.

Now the not so good news. Got a letter back from DWP and I have an assessment with ATOS on the 3rd of June. This should be interesting. They have asked for all my tablets and aids.... no room in the car for everything I need for help on a day to day basis and even if there was the assessment room would not be big enough. Worried about attending, people keep telling me that they should be no reason why I would lose it but hey this is the DWP who can say what they are going to do. I have heard stories of people who have lost the money and worse then me.Losing it would have a huge negative impact on my life and make me more of a recluse then I am already. At the moment other then Uni and drs/hospital appointments and possibly one day a week in the town I do not go out. I socialize....well ....I don't really. People tend not to ask me too and when David and I do get to go out to the pictures it is once in a blue moon to be honest.
Ended up at the Doctors as the Tramadol is no longer working and have been given more tablets to take along side the paracetamol and the Tramadol which are Nefopam 30mg. Have to start off on one tablet a day then slowly increase until am on 3 a day. So far experienced  a bad stomach, nausea and a slight euphoric feeling but no help with the pain. The doctor has told me that eventually, whether I want to or not , I will have to go onto the hard core tablets full time. That means not being able to function during the day. Not sure what impact this will have on my plans but hopefully I can stay off them long enough to carry out what I want to do.

Also having to have a blood test and an ultra sound on my underarm as they may be a lump. The worrying thing is that Cancer is big in our family my sister and niece have both been affected in various ways including breast and cervix cancer and my mother died of cancer of the stomach. Better to be safe then sorry I suppose but it is still worrying times. Also having to get in touch with the Genetics center at Newcastle to see if am predisposed to it. Still awaiting an ultra sound on my stumps about narrowing veins and hospital appointment to have my neck, shoulders and back checked out . Not good times.
could not talk to the doctor about every thing I need to as my anxiety and depression my be on the raise again but I had not made a double appointment and was told I would have to go back another time to discuss them. On top of all of this my dad has to have an MRI on Monday as he may have a form of dementia. The thing is he is now getting abusive to my older sister Maureen, but does not even know who I am...don't know which is worse to be honest. How would you feel if you mother was dead and your father did not know who you where and just thought you where some strange women?

To round the week off went into town on Wednesday and when in HMV was treat like a child by the sales assistant. I was so embarrassed that I honestly did not know what to say. I thought I had gotten over the whole self conscious thing and feeling insecure, lack of self confidence,but the way this woman treat me has really made me feel that way again, Its surprising how one little thing done or said that might not have been meant as anything in particular, or not even a conscious thing by the person, can have such a huge negative impact on some one.

However lets end this on a good point. Showmasters got back to me and they have refunded Davids tickets as they do carers passes and have sent me an email with all the information on  that will help me with getting around Comic Con in London ! So much help am over the moon and it has really stopped me stressing about going out of my comfort zone. Now am just looking forward to it. Still not sure to cos-play or what as so any thoughts on this would be great.

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