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.....

NO NEWS IS GOOD NEWS OR SO THEY SAY

Things have been a little hectic since going back to university.

Every thing going well, lots of reading of psychology books as you would expect, assignments already starting to come out of the woodwork and this year we have a new support worker, Gail. There was no issues getting the taxis sorted back out and things seem to be running smoothly at uni for a change although debating the psychology of religion is interesting. However I cant say that in other areas of my life.

My farther, since being diagnosed with mixed dementia just before I returned to uni, has received no help what so ever. In fact the social worker that was assigned to him decided that because she saw dishes in the sink and assumed (wrongly) that meant he had eaten that day (in fact those dishes had been there for a number of days, that she saw no rubbish (because my sister had cleaned the house just days before, which we told her) and she could not smell any bodily smells ( will leave that one to your imagination), then he was capable of making his own decisions. This even though the CPN who was there knew the consultant from the Dementia clinic had declared that just looking at him any one could tell he was "not all there ". Lovely man (insert sarcasm here). Don't even get me started on the way he treat and talked to my dad.

So we are slowly watching his money going missing, his house going to wrack and ruin and him not changing his clothes or eating because we can not get help for him. This all due to this social workers recommendations on him being capable.

So that on top of uni work. Then you need to add on my health getting worse.

 With the onset of the colder weather now in the UK ,my joints and mobility are getting worse and so are my stumps. Already on paracetamol, Nepfom and Tramadol. So after ringing the doctors I was put on Oramorph 5 - 10ml every four hours. Not a good thing for uni. Have been taking 2.5 ml in the hope that I could get away with that. Nope. Needed to up it to 5 ml a couple of days ago. This made university very interesting yesterday. We where doing a spot on visual attention, so here's me high on medication trying to count how many Blues are in the song Blue by Eiffel 64 at the same time trying to find Wally.......I think I was an outlier....it was a very trippy effect to say the least but the lecture found it amusing to say the least. Today I have woke up with a swollen  right stump and purple spots all over the bottom of my stump. Putting the liner on is like a million shards of glass in my skin and that's before putting weight through the leg. My initial thought is a reaction to the Morphine due to upping the dose. So off I come. The pain is unbearable, but am grinning through it like I always do, hoping that tomorrow its manageable and I can get into uni. I have an assessment on the 4th of November for an electric wheelchair, which if I get it will make my life so much easier giving me so much more independence.

So now we have uni work, dad with dementia and pain increase. Then you need to add the event in the mix.

Last Saturday we held a promotion at The Bridges in Sunderland . This was to promote the Halloween Monster Masquerade Ball on the 31st at the Stadium of Light, but also to promote what The Psych Twins do.
The response was fantastic and in just little over a week we have had 700 new visitors to the site. We are thrilled. The final preparations are in place now, balloons for the tables booked, decorations for the room ordered and costumes bought. I am going as Cruela De Vile. I have even bought a Dalmatian cuddly toy to hold and stroke so am going to look like Blowfelt from James Bond....just with no legs, well plastic legs..you know what I mean.

For information on our event go to https://www.facebook.com/events/417935758373799/

Facebook page is https://www.facebook.com/psychtwinsfundraising

Twitter https://twitter.com/psychtwins

Website http://thepsychtwins.bravesites.com/

If you would like to donate to The Psych Twins http://www.jumblebee.co.uk/post/trvDZTEUem

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.)

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 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.

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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.

Don't forget if you want to talk to me, ask a question, need advice or some one to talk to there are several ways to get in touch. All you need to do is copy and past the link into your browser or click on it.

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ASSESSMENTS, EXAMS AND STRESS !

May is the season of those all dreaded exams !......well it is for me.

Coming to the end of my second year of a four year extended degree course in Psychology. The time has gone so quickly. It seems like only two minutes ago I was all wide eyed and eager to be on campus . Now I feel like a veteran fighter of SPSS software, Research papers , Journals and library books. Don't even get me started about he referencing !

I am happy with the progress that I have made this year but the attendance is a bit of a let down. Understandable considering that I have been dealing with personal issues, stump splitting and other health issues that have plagued me more this year then last. But if I have managed to get the results I have off the attendance I have had for this year then next year they will be even better.

Preparations have gone well and I have actually managed to get some decent revision time in. I have been sent my exam timetable where I have been given extra time , PC use and a scribe if necessary. This has greatly put my mind at ease.

Another area of assessment was for an electric wheelchair. I was referred by the Disabled Service Center at the Freeman's. But this has took at least four month for an appointment to come through in order to be seen. I ended up having to miss University as it was an all day appointment. They could not give me an actual time that they would be coming out. Well after waiting all day they came out and the assessment was over and done with in five minutes. I have to wait 3 month to find out if I qualify then two month to get an appointment to try one out then another 2 month before i get one. But here is the downside. It can be lifted into a vehicle and it cant be folded down to go in a boot. So what ever car I use mine or a taxi has to have ramps that I have to maneuver the wheelchair up. After my track record of wheelchair ramps with Station taxis and various others, including my close call with ending up in hospital because one taxi company dropped me off the side at the top of  a pair of these ramps, well, lets just say am not convinced it will be beneficial or indeed useful for me.

Still no news on being referred for a scan on my legs and stumps for blocked vessels or issues. If you remember this was due to the splitting of the stumps and the lack of colour and how cold the legs where becoming. Put it this way they would be warmer sometimes being stuck in the freezer at -30.

But an assessment of another type has been received. The dreaded  PIP !!!!! da da daaaaaa!!!

So finally it is my chance to go through the process of the PIP reassessment for my DLA. This should be interesting . Now there has been a lot of horror story's going around about being assessed for this such as people losing there benefits, being asked if limbs will grow back. being told they are capable for work or not being told that they qualify for mobility for a car. So I have two large booklets to fill in , trying to explain to some one who might have no medical experience what so ever that no matter how many times the form asks, no I can not walk with out my prosthesis, yes that means I can't climb stairs, no my wheelchair does not turn me into a darlek meaning I can now do steps etc by flying. Oh and no, they are not going to grow back anytime soon.

But although this is a stressful month there is light at the end of the tunnel. One point of light is I have re booked Disney for three weeks this time next October. This is booked through Jetsave so lets see how they compare to Thompson. The assistance form leaves a lot to be desired so reserving judgement on the rest. This time trying a deluxe resort at the Wilderness lodge. So considering we had excellent service from a value hotel and a moderate hotel from Disney, I am expecting this to blow my mind.

A second light is that we are definatley going to London Film and Comic Con at the Olympia this July. I am nervous about this as I have no idea what the facilities for wheelchair users are. Looked at the layout of the exhibition center and seems easy enough but lets wait and see. Getting cars to take us down as am not brave enough yet to try British rail lol. Staying at the Olympia Hilton that has been booked online and have stated that am a wheelchair user so again lets see what happens. Showmasters as yet have not replied to any communications regarding disabled issues etc. tut tut.So this is me going out of my comfort zone. Watch this space for feed back on both of these things.

Also looking at trying to get people together to do gishwhes which is a world scavenger hunt and hoping to get tickets to Asylum 16 which is a Supernatural convention. Watch this space as well as me and Jo have opted to do The Great North Run in 2016 dressed as......wait for it.......AB FAB ! am Eddy of course :)  This is in order to raise funds for The Psych Twins so we can open a center to offer support, advice and counselling for disabled people and their families including families of children with ADHD and ASD. A news article to follow on this soon.

Here are some links all you need to do is copy and paste them into your browser:

https://www.facebook.com/theamputeediaries

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

https://gishwhes.com/

https://twitter.com/greebo89

http://www.showmastersevents.com/

So no pressure then......

PREPARATIONS , BIRTHDAYS AND COMIC CONS

I am trying to improve the blog so that as well as detailing my life, trials and tribulations being an amputee and in a wheelchair, but also as a source of information, help and advice.

I would like to think that if just one person found an answer to a question or reassurance that life goes on and they don't need to think of themselves as a burden on family then  I have done something right.

We are coming to the end of our first year on University campus but my 2nd year of a 4 year extended degree in Psychology. It has had its ups and downs but has definitely been an experience that am glad I had and looking forward to next year.

The support has been brilliant from Student Finance, the disability team at University and from the staff themselves. But we are now coming up to exam time. eeek ! But do not fear, every thing has been put in place for me to succeed , well as far as not worrying about access etc I still have to sit and pass the damn things.

I have received my own timetable, been given extra time to complete exams a long with a separate room and invigilator, PC and some one to scribe for me if needed. This is brilliant as it takes off any added worry or pressure that this could have caused for me. Now just need to try and stay calm and sit the exams in May. Wish me luck.

Last month I took part in a number of things after making a promise to myself to have as many new experiences as possible. Never let anyone tell you you cannot do something because you are disabled or in a wheelchair.

First off I took place in raising money for Student Minds through a group at university called Thinking Ahead.  This involved doing a couple of radio interviews with Sun FM. I set a target of  raising  £100 , once reached then I would shave my head.Well as you can see from the photo the target was not just reached but smashed with a grand total of approx £182 raised ! The head shave took place in The Prospect building at University where we offered people the chance to take a chunk of hair for a donation. After an hour the head was shaved.

If you wish to donate the link is https://mydonate.bt.com/fundraisers/jenniferclark1

Thinking Ahead are on Facebook https://www.facebook.com/thinkingaheadsunderland?fref=ts

We also celebrated two birthdays in the house. Toyah turned five and Eden turned nine. Unfortunately did not make Toyah's birthday party due to ill health , but from all reports it was a success and Elsa stole the show.

Eden's was held at the Sandcastle Pub in there fun house. Access for myself was fine with no issues being able to get in or out of the building or the fun house. The children all had a great time and what was even better was there was no mess for me to clean up. So a win win situation.

My other big outing during March was to Newcastle Comic Con which was organised by Showmasters. We bought Early bird tickets for both the Saturday and Sunday. We all got dressed up and on the Saturday I went as Maleficent.

 The attendants on the car park where helpful and checked the blue badge before directing us to disabled parking then informed us that it was free. Bouns ! Access to the building was on the level and no issues getting in . Although after the event I found out that on production of my DLA letter and Davids Carers letter he could have got in for free. The website does not state this any where and having emailed them several times about other things they are really bad at replying. As yet am still waiting for reply's on my questions !

The foyer was not crowded and no one give me a second look, well to be fair with all the Green Arrows, Storm Troopers , Darth Vader's etc I guess I wouldn't.

Being honest I was concerned about how things would work for me accessing stalls , autographs and photo shoots. But apart from the odd hiccup it was nothing to worry about and there was other people with wheelchairs etc present as well.

Showmasters had handled things really well considering how badly things could have gone and I was impressed. It made my first Comic Con very enjoyable and wanting me to do more. The staff where helpful regarding access to signing and  the photo ops and the stars themselves went out of their way to make sure I got the same opportunity as the other fans. Finding the disabled toilets at the venue proved a challenge

so ended up using the normal toilets and getting out of the wheelchair to use the cubicle. Not great if that is not an option. Getting around was slow as the venue was not large enough for what they had in there and the main worry was Anna crashing me into stalls, autograph tables (which she did twice) and taking peoples ankles out. It also made shopping and looking at the stalls very difficult. But we waited until it had cleared out a bit by 4 pm and accessing the stalls at that point and being able to get around was fine, much easier. If you don't like crowds or being hemmed in with the threat of going into some one or them falling on you I would  wait until it has quieted down for the shopping.

The only problem with that is that the traders bring limited stock with them so you may miss the chance of getting that certain something.

Unfortunately due to the long day and excitement my fibro flared up and stopped me from going on the Sunday. But I must have made such an impression as Garret Wang ( ensign Kim from voyager) saw Anna and asked where I was .....not sure if that was good or not as not certain whether it meant I made a good impression or the wrong type of impression !

So something I want to try again. Thinking about heading down to London Comic Con at the Olympia, Again not certain of their access at the venue for wheelchair users as waiting on Showmasters replying to my email. But lets see what happens. Hotels are proving  difficult as a couple of them that are near the exhibition center are  not disabled accessible, nor  do they have accessible bathrooms.

Transport is also proving an issue as we are trying not to take the car due to the long drive and the price of parking. We are trying to stay as near as possible so we don't have the nightmare of trying to access public transport  such as the tube !
Also off down to Manchester in May with Anna as  she is going to see Tyler Oakley???? Which means we are taking her down and having an over night stop down there to do some shopping. So this should also prove to be an interesting experience. I have to admit these two next trips will be very much taking me out of my comfort zone and I have many concerns especially about how things will work for access, transport and accommodation.


Another thing I am trying to put into place is a fundraising site called The Psych Twins. This is to raise money and awareness for local North East Charities. In October we are going to be holding a Monster Masquerade ball to raise funds for Sunderland Carers Center. We have a comedian and burlesque act . meal. raffell and disco all being held at the Stadium of Light. We have Johnny Depp's official stand in Simon Newton attending as well as a special guest to be announced nearer the time.

https://www.facebook.com/psychtwinsfundraising?ref=hl

But on top of this I am currently carrying out research on services pre and post op for amputees .  I believe that not enough is being done with regards to advice, support and therapy.
Once the research has been carried out my colleague and I are hoping to set up a center where we will be able to provide this along with a web page containing advice and on line or telephone counselling.

If you can spare five minutes and are an amputee please follow the link and complete the survey.

https://surveyplanet.com/5509dfbe1945880c2c5b4701

If you do need to talk , advice or concerns you can contact me through twitter or Facebook

https://www.facebook.com/theamputeediaries

https://twitter.com/greebo89

SUMMER

I have now been on summer break from University since the end of May and the weeks have been stretching away into the distance. It seemed at one point that they would go on forever, but as I sit and type this I realise that it won't be long before am back at University again.

Am due to start back on the 22nd of September and my freshers week timetable has just arrived starting on the 15th of September. I have to be honest and say that the summer weeks have been slow for me and am looking forward to going back and getting my teeth stuck into the work. I was really happy with my results from my first year which was a level 0 with most of my exams and assignments coming back as a first. So it was with a happy squeal of  delight that I read my transcript to see a pass and proceed.

My meeting with the DSA team at the university went great and am going to be getting a lot more support from them this year that wasn't in place last year. Things such as extra time for exams, copy of lecture notes in advance, a scribe to take notes when my hands are too bad or to help during the exams, deadline extensions if needed, rest breaks and the ability to record lectures as well. Taxis all week to get too and from University and a support worker for 37.5 hours a week, which is great and means I can work in the library when I need too when I don't have a lecture or seminar. They are also sorting out desks for the right height for the wheelchair and extra loan times or help in the library as well. I think the problem last year was down to the fact that it was not through the University itself but in partnership with the college. This meant that things I should have had the college could not supply or had not been informed about by the powers that be and the University could only pass on what my needs where  as technically although I am a University student, I fell under the college jurisdiction.  Hopefully the college will sort out the issues they had ready for the new term this year.

David Goldman building where the first lecture will be  the welcome from the Dean

So what else has been happening since we last spoke? I hear you cry ( ok well maybe I didn't hear it but you might be thinking it? ) My eldest came back from University at Stafford at the end of May and is now getting ready to go off to Leeds festival in a couple of weeks. He will then be home for a few days when he will be packing back up again to head back to University. Sadly I lost one of my cats last week Harley Kitty  so that upset every one in the house.  

Harley Kitty RIP

The other health issues are the same old same old. Back at the chest clinic for my sleep apnea and chronic fatigue . Looks like I will have to take my CPAP machine on holiday with me. Also had to go back to the doctors for Tramadol and to see about my hands as the pins and needles are getting worse and am now losing the feeling in some of my fingers. They think it might be a nerve problem so we will wait and see.  As for the weight loss?..well...mmm.. not so good. I admit I have no willpower  which sucks when you are trying to lose weight and need to be good. I have upped my exercise program so as well as doing my physio on a morning and my version of Ti Chi, I am also doing push ups, weights, leg raises and wheelchair exercises I found on You tube. As well as this I have changed my eating habits. Cut out processed bread and food, eating more salads, fruit and veg along with fresh meat. As well as this I am also trying out that 5.2 diet. This is where you eat as normal 5 days a week and fast with shakes for two days. You also get one meal each of the two days but no more then 126 cals per meal. Yes I do feel that am starving but having looked into weight loss surgery as recommended by my doctor, I would rather do this then put myself through that. Any one who reckons that it is an easy option have no idea what they are talking about! Although I do have to say some of the people I know who have put themselves through this have wasted their chance as they are not making the drastic changes or not sticking to the changes they need to, so in my opinion have put themselves through all of that stress and pain for nothing. But as usual I will keep at it and try my best. Its not all doom and gloom I have managed to shift a couple of pound at least.

So to end this on a good note we finally told the kids about going back to Florida this September. We waited for Tylers 10th birthday party and got Captain Jack Sparrow to tell them. To say I have the most reserved and typically English children ever is an understatement. They didn't get excited until after they left lol.

 So every thing is ready for us leaving on the 29th for two weeks in the sun. Now that we have been before we are aware of what to do and what to expect for myself being in a wheelchair and Tyler who has ASD. There has been new things I have found out in my extensive research this time that I did not know the last time. Such as getting a wheelchair adapted room with a roll in shower, DAS and AAS passes for universal and Disney World for Tyler, making restaurants aware I am wheelchair bound prior to the meal,being able to order groceries delivered to your room and booking a Town Car for going off property so you don't have to drive or worry about accessibility. I have also decided to blog more about my experience traveling with my disability and various health issues as well as blogging more about my experience at University. They will be more pictures as well. This is in the hope that it will help people who are going through/been trough, friends and family's of any one who has any kind of disability or health issue  to know that life doesn't have to stop because of it no matter what the disability/health issue is.

YOU CAN ACHIEVE WHAT EVER YOU PUT YOUR MIND TOO. YOU ARE THE ONLY PERSON THAT CAN HOLD YOU BACK 

FUTURE PROOFING

Its not long now till the end of my first year on a Degree course. It has been enjoyable and at times frustrating, sometimes down right annoying, but the main thing is how far I have come as a person.

So whilst revising for or last two exams and awaiting the final results for our assignments we organised a visit to St Peters Campus and the DSA team based at The Gateway. This is something I would highly recommend for any one thinking of starting a University course anywhere, Disabled or not. It proved to be the best thing we did. For me it was the peace of mind knowing where I was going to be, knowing what to expect as this helped with my stress and anxiety issues. As well as that it was a dry run for getting around the campus with the wheelchair, fitting into lecture halls and class rooms and through doors. Again this helps with knowing what to expect so it is not a nasty surprise or embarrassment come September. For Jo it was the peace of mind knowing what was going to be expected of us , time tabling for child care and mental preparation.

 We met the head of the module who was really happy to answer any questions we had, talk us through the program and made sure we where comfortable. putting us at our ease.

 The space was incredible and so where the facilities and Jo and I have already sussed out the best root from the library to the Costa coffee shop and the canteen :). The meeting with the DSA team was brilliant as well. Again if you are thinking of attending college or University get in touch with these people. I didn't even realise how much help was available to me during my time at University. Everything from transport to get there, a helper around campus, to access to class notes in advance, rest breaks and support put in place for field trips and exams.

The library 

Looking around the campus the excitement grew and now am bouncing with the idea of starting and feel that September cant hurry up fast enough now for two reasons! I would never have thought 12 month ago that I would be able to do this or even get this far. My health was getting worse (still is but we are working on that), I had to leave work, the amputation hadn't gone according to plan and had not given me the freedom I had hoped and wished for, I was not in a good place mentally with regards to depression, body image and self confidence.

Now here I am, all assignments completed and handed in 3 weeks early, getting ready to sit my year end exams, preparing for moving to campus, looking at joining societies and trying to organize a fund raising event where I will have to be in the public arena and on display deliberately looking silly!(more news of this to follow).

my view of the lecture

Main lecture hall, my view from where I will be sat

This is the beautiful view from the canteen.
 

So this moves us on to my health and weight issues. Recently I decided that I needed to up the game with these two things. So this has taken the form of making sure I do my physio every day and I have added to this a bastardized version of step aerobics using the first step of my stairs and stepping on and off it . I currently can manage 10 of these before it hurts. Coupled with this I have started to try walking to the sitting room, bedroom and toilet with out the aid of my crutches. Its hair raising at times but I can do it...just. I have 141 days left before I head of to Florida and I want to be more mobile to do the things I couldn't do 2 year ago. I also want to try and improve my health so that I can get rid of the CPAP machine and ease the pain from the fibro and arthritis. This is not going to be easy and I know this, but its something I have to at least try other wise I will feel like a failure. I have posted a picture along with a video of me walking, this is a big step for me doing this mentally considering how embarrassed I feel and how much of a low opinion and low self esteem  I have of myself. This is a testimonial of how far I have come so far and the journey still ahead. Wish me luck !!!

This is me now at just over 21st

this is me showing how I walk at the moment and the size I am right now

THE END OF THE ACADEMIC YEAR

This time at college has really flown by. In less than 5 weeks I will come to the end of my first year on my Extended Degree in Psychology. September will see me moving onto campus at St Peters and playing with the big boys.

I remember thinking that I would never understand any thing they where on about in Research Methods, IT or Algebra and Stats. Now look at me I am heading towards a first, Still don't understand but can do Algebra..if forced too!( still want to know why the letters, its wrong, so wrong, what do they stand for Apple, X for Xray? is it some secret mathematical Morse code or something?) Getting ready to sit a Stats exam and created, implemented and wrote a 20 page report on an experiment to do with memory for Research Methods with Joanne ( although must remember to call them "participants" and not "victims").

All joking aside, the last 9 month has been a hell of a ride for me and helped me develop, grow and become comfortable with who I am and where am at in my life. The best thing I ever did was leave the rat race and I now know that being in a wheelchair does not stop you from living your life to the full. Its not been an easy lesson and not every thing at college has been smooth. I still feel that they have a lot of kinks to iron out not just for disabled students but for everyone who takes a HE course as part of the University.

Friday sees me going across to the University for a visit to campus so I can get an idea of what faces me across their and to iron out any bumps. Also meeting with the staff and the DSA team who will help me with any needs I have. Promise to bring back photos ! Am thinking of taking on a more active role at University as well, getting more involved in things on campus. So I am applying to be a BPS student rep as well as looking at raising money/awareness for mental health with Jo by doing a lot of crazy and fun things during fresher week in September and last week of College( need to get permission first and work things out). But watch this space.

Not going to even mention my weight as am sulking about it and not speaking to my body ! but when I get out of my strop I will give you an update.

To be fair these last couple of weeks have been hard. I am currently fighting off an infection under my arm where an abscess burst and its making me feel rather ill, the sleep apnea seems to be getting worse, so too the arthritis and am swelling up like a balloon due to the fibro. So i think I can forgive myself a little here for not being hyper good with  the food and exercise.

But a bit of good news to end. I can now walk into the sitting room or to the bathroom without using my crutches or the chair. Its progress, slow, but at least its something. :)

SPRING TIME AND NEW BEGINNINGS

Can't believe its been 2 month since I last updated this.

Although things haven't been fast moving  things have still progressed in all areas of my life.

Started taking the physiotherapy more seriously again and have Incorporated it with other exercises in the hope that it will help me lose some weight. If not then at least it should keep my fitness levels up and help tone up some of the flabby bits. As a family we are all trying to eat a lo healthier and have stopped buying meat and fruit from the supermarket and using a local butchers in Grange town called Stirks instead. Their meat is the best and so are the prices so it is not just healthier but cheaper, always a bonus. we have also stopped buying so much processed food from the supermarket as well as changing from their bread to fresh baked bread . All of this seems to have helped my IBS a lot so another win win situation. Weight loss isn't great bu it is starting to decrease. The worst part is working out what is due to being unhealthy and weight gain and what is down to swelling from IBS, Arthritis and Fibromyalgia as these can all cause drastic weight gains. Add into the mix being in a wheelchair and pain killers and its not a good combination.

Only five weeks after the Easter break left in my first year at University and I cant believe how quickly it has gone ! I have enjoyed my time at Sunderland College (with it being an extended degree of 4 instead of 3 year the first year was at college), it has been a little disappointing in some aspects,. Definitely the best thing I have done but a bit disillusioned with it as not all that was promised or expected was delivered. But so excited about moving onto campus properly come September ! After speaking to my tutor it looks like if I keep up the hard work over the next 3 years then I will be heading for a first. So if you are sitting out there reading this, disabled or not, wondering if you could/should...just stop and do it !! you will be surprised how much help there is out there and how much you will enjoy it. Personally I have learnt a lot about myself in the last 9 months and found things out about myself that I never thought I would be capable of after my amputation.

Still counting down for September and Disney and have managed to get out socially with friends the other week. This was the first time in nearly a year. I plan on doing it more often, like I said before the amount of confidence going to University has given me is unreal. I released that I CAN do these things and I SHOULD enjoy myself just like everyone else and I am NOT an inconvenience ! So seeing as it was far and few between occasions off I went to the beauty salon. Can I just say how the hell women put themselves through that torture every week for those single eyelashes is beyond me! I don't know what was worse getting them on as it felt I had been blinded or taking them off. It was all worth it  though I felt like a million dollars and for once was happy with my body image, something I haven't been in a long time.
I have also been inspired to apply to more casting agencies, so that is what I have done.  Having had a screen test for a movie I released it wasn't an experience that most people will get and I loved every minute of it. I may not get the part but what a story to tell the grand kids.

So I guess overall just like spring I feel like I have been given a second lease of life. Another chance not just to plod along but to actually apply myself and do things I enjoy, experience things that prior to the amputations I wouldn't have dreamed of never mind now, just live life to the full and damn the wheelchair and no legs. My kids see me living life to the full and not letting things such as no legs hold me back then hopefully they will relaise   that in this life anything is possible, never give up and dreams can come true if you work hard.This is the legacy I want to leave. I am not saying its going to be easy. I am not saying am not going to have set backs or issues. Hell I could be on a total downer tomorrow and sit and wonder how much more I have to take and why me. The point is..eventually... the good days will out weigh the bad ones. It just takes time and a whole lot of hard work.