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 !

The Psych Twins

The Psych Twins



New site for advice, support, help and for free events .



Updated on a weekly  basis and full of helpful advice. Details of  Monster Masquarade Ball dates now anounced as well as companies who have donated prizes for  the raffle.



Rasing much needed funds for The Sunderland Carers Centre which includes the young carers Centre.

THE DARK SIDE OF LIFE

There is a side to life that most people go through but rarely want to discus and that's depression and anxiety. Its like the elephant in the room. Being disabled from birth I have found that I bounced back easier then I do these days from it.

I am not saying that disabled people get this more or worse then anyone else but I often find myself wondering how much it dominates other amputees lives. Losing a limb is like nothing else health wise I have been through and grieving is definitely part of that process. Its took me 4 year to be objective and admit that having the second amputation really screwed me up mentally.

At first I thought it would be no different to going through my first amputation when my feet where removed. Couldn't understand why people made a big deal about grieving for the limb and how they found it hard to get past it, not until I had the below knee, then it all made sense. I was so not prepared for what was about to happen to me or how I would feel afterwards.

Therapy and advice was non existing for the second amputation. For the feet I was introduced to a guy who had lost his leg below the knee from an accident at work, nothing like me having my feet removed through necessity. This time though there was nothing. I was not given support before I went in, never mind after it, no one to talk to, I wasn't even put in touch with any one who had been through this for the first time never mind a second time. But hey I would be fine ..right? wrong!
Although the operation went well I found it hard to bring myself to look at the bandages. This just got worse when it was time to remove them. I felt physically sick every time I looked at them. I wouldn't look in a full length mirror nor did I want my photo taken. I wouldn't go out, my friends stopped coming around as often (not sure if it was because of how I was acting or because they did not know how to handle the fact I had no lower legs), I stopped getting invited to go places, nights out and family events as I guess it became more "complicated" to accommodate me or because people did not want a constant reminder of their own mortality. Maybe it was because it would be more trouble then it was worth or they assumed because my legs where gone so had my likes, interests and personality.

I became agoraphobic and having panic attacks at the thought of going out never mind to a new place, not sleeping, moving between binge eating and not eating at all, sleeping all the time and up all night not to mention the crying and mood swings. My weight ballooned and family where non existent for support or help.My mother was dead and my husbands mother helped as much as she could up until her death but when she died we where left afloat on our own and I became more dependent on my two oldest kids and my husband.

I was discharged from hospital with no help put in place. We had to organise the wheelchair our selves, as well as OT to look at adaptions. I had to apply twice and wait over a year to have the bathroom adapted so I could use a toilet instead of a commode and a shower instead of having a bed bath.
Trying times that luckily made me and my husbands marriage stronger if anything and my relationship with my children better. I ended up on anti depressants and having CBT therapy, which I had to do the research for and implement myself.  That is when my life turned around. I found the tools to manage my anxiety, signed up to University and have never looked back !

But not everyone is as strong as me, not everyone has a loving husband and kids who understand and this is when depression can swallow you up like a black whole, never ending and not forgiving.

That's when I thought "is this the same for everyone who goes through an amputation?", "what about people with other disabilities? do they have anything in place".I went back to work 3 month after my amputation, desperate to get back to a "normal" life as quick as possible, this was when things really went down hill ! The medication I was on started having effects on my judgement and I left the job I had as I felt uncomfortable, out of place and discriminated against. Then came the trying to get another job. Not great for a confidence boost, you would be amazed at how many employers will not higher you on the grounds of not having the facility's to cater for some one like me eg an amputee using a wheelchair.

I did find another job but then my other health issues started to raise their ugly heads. My body was in shock and my nervous system was suffering from trauma and working was no longer an option,  I felt at one point that society had basically washed it's hands of me and I no longer had a purpose in life. Yes I had no legs and was in a wheelchair, alright this ended up causing other health issues for me, but surely this can't be it?? There must be something I can do? I can't just spend all day every day on meds that spaced me out watching the days merge into one and time slipping away.

But how many others just accept this? Believe the crap that society feeds them? thinking that because of this their life is over?  This is wrong !! There should be something in place to support and advice people before AND after the operation. People with disabilities should have access to free counselling to help them if and when needed , some one to point them in the right directions for services, help and advice. This is one of the reasons I have started the Psych Twins.

If you are suffering from depression and think whats the point? you are not alone.  You are not the first and wont be the last to go through this, to feel the way you do. You're not "abnormal" for feeling the way you do and do not let anyone make you think you are. Your life is not over!!

Yes am better these days then I was but I still suffer bad days as well as good. There are days when I wonder why I bother and what is the point of getting out of bed. Days when I think to myself " why struggle on painkillers that take the edge off when you can take stronger ones and just let the pain and days/time slip away". I still have times when I cry for no reason or something some one says or does that normally would not bother me makes me despair or break down. Anxiety, stress and panic attacks are still my constant companion but I now have the tools that help, sometimes they still over whelm me but its better then it was. And I still do not like having my photo taken in my wheelchair, but am working on that one lol.

The point of this story is you might ask. I guess the point is, you are not alone, this is normal, don't give up and keep fighting. You are worth it ! If you need to talk or have questions please feel free to contact me.

Link to Facebook
https://www.facebook.com/psychtwinsfundraising?ref=tn_tnmn

Link to Twitter
https://twitter.com/psychtwins

Link to Website
thepsychtwins.bravesites.com

....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.