Home truths – despair settles in

It’s been a while, dad has been moved into a care home due to his dementia getting worse and then was rushed into hospital where we were told that he had bowl cancer and things amped up at university with it being the final year. Change of location as the Psychology department was moved from St Peters campus to the City campus, final assignments, exams and final dissertation.

Speaking of changing campuses the trouble this has caused for me is unbelievable.   The move to the city campus was supposed to be a smooth transition until I found out that none of the lessons I had at the Priestman building where accessible. Add that to the up and down situation with my father, who as you may remember has mixed dementia, has caused me to miss out on workshops and lectures this semester. Leaving me at a disadvantage regarding my upcoming exams.

This all ended up with me in tears yesterday trying to hand in my dissertation project book and being unable to access the building and a able bodied woman banging on the toilet door in the shopping centre telling me to  hurry up…the disabled toilet  that is, which was being used by someone in a wheelchair…me.

People really don’t think do they? I mean we are supposed to be a society of caring, responsible, intelligent and understanding people…aren’t we? No… we are not!

I personally think that we as a society and a race we are de-evolving. I have tried for years to debunk the “them” and “us” divide but am wondering if it’s true after all.

No one will ever understand what it is like to get up every day and have to ask someone else for help you just to do the smallest of things like get out of bed, put pants on or stand up. It’s not just the embarrassment but the mental anguish it causes. I hate the way I am. I don’t enjoy it. I didn’t want it. It just happened and am left with the aftermath.

Society and the government sees me as a drain on resources, an inconvenience, someone to be singled out and criticised. Scapegoat for fraud, rising unemployment figures. My peers either pity me, or blank me there are very few who support me and have stood by me throughout this, but they, no matter how had they try can never understand what it is like. I have lost count of how many friends don’t bother with me anymore, or how often am over looked when it comes to nights out or family events, it’s an inconvenience you see. Me being in a wheelchair.

I  sometimes need help to sit up, get dressed, pick up things off the table or floor, get tablets out, and cook a meal. Don’t even get me started on having a shower. I can’t do stairs and need someone to help me step off a kerb. I can’t go anywhere on my own as I need someone to push me, I can’t walk the dog, go for a walk, swim, dip my toes in the water, go in the sea, walk on the beach, feel the sand between my toes, clean my own house, get to the girls room, wear funky socks, soak in a bath or even get in a bath or feel a carpet under my feet.

I take tablets morning noon and night and then in-between. They make me gain weight and bloat me even though I barely eat I still gain weight and can’t lose it. Yes I have the odd treat but you look at me, a larger lady in a wheelchair with no legs and the automatic assumption is “who ate all the cakes, pies and biscuits” and it’s thought that the legs where lost due to being fat, over weight and diabetic. They weren't. I feel disgusted in myself, don’t worry. It has been said to me that by someone that I am the reason that they have an eating disorder….they don’t want to turn out looking like me…fat.

The disabled complain about the “disabled porn” how we shouldn’t be inspirations, bollocks to that! I hope I am an inspiration to abled or disabled people. I work hard just to do day to day stuff never mind go out, work or go to university. 

I feel dead inside.

 I have sitting in front of the telly not leaving the house unless it’s my weekly one day a week trip to the town or off to the doctors or hospital to look forward to. No one would hire me due to not being able to guarantee when I would be in. I hate the way I am, I hate the way I look, and I hate my size. “Just go on a diet” “you need to move more look for wheelchair exercise” “just go on slimming world I did “yes and you lost weight because you are more mobile than me…it’s not that simple. I wish it was.

I get up every day, some days when I don’t want to. Some days I just can’t face it but I get up. Everything you take for granted, every little thing you do, needs the utter most planning for me to do or participate in, that’s if I can.

 A day out with my family, a meal, a trip or a holiday needs to be planned to every last detail. Access, toilets, fitting through doors, getting round, getting there. I worry constantly about getting in the peoples way or blocking things or places. I worry about being an inconvenience, the embarrassment and the mental torture I put myself through. When something goes wrong or there are issues accessing 

somewhere or something it makes it worse, it’s like ramming it home, rubbing it in my face.

I just worry.

This is not what I wanted, despite what you might think. I want a life, I want my life, I miss my old life.

INSPIRATION

So I have read a lot lately about people with disabilities being other people’s inspiration.  However, this seems to be getting a lot of disabled peoples backs up. There are lots of comments along the lines of how degrading it is, how we are inspiring to others by just living our lives or patronizing it is to be told how “inspiring” they are.

Well for what it’s worth, here is my opinion on it.

I feel quite good about being some ones inspiration to be honest. If what I manage to do can help someone else, motivate them to achieve something or just to keep going. Then good. Am glad. Able bodied or not, I am happy if I guilt you into not complaining or getting up off your arse to do something. I feel elated and ecstatic if I can make just one person say “if she can do it then so can I “.

Disabilities come in different forms, some we are born with and some happen due to accidents and illness, but how ever or whatever has happened to us, it changes our lives in so many ways. I am not afraid to admit that even though I was born with a disability, unless it involved standing for long periods or walking a distance, I never really saw myself as disabled as it did not interfere with my day to day life (unless you count not being able to wear shoes from a shoe shop as my shoes had to be made by the hospital for me).

Since the last amputation however, I now consider myself disabled, as not only does it impact on my day to day living it has a major impact in all areas of my life and everything and anything I want to do. I do struggle to do things like walk around the house, make a cuppa tea, cook a meal, showering, stairs are a complete right off, nights out, shopping, hell getting into and around some shops and premises can be an Olympic sport in itself!

So, yes, if me managing to live my life, getting through the day and doing normal day to day things without help, if holding down a job or gaining a university degree when the odds are stacked against me, which makes things more difficult to do what other people take for granted, helps other people who are disabled to believe in themselves or someone who is not disabled feel more motivated to do something then that makes me happy.

A ROSE BY ANY OTHER NAME

****WARNING IF YOU ARE OVER SENSITIVE AND VERY PC YOU MAY FIND THIS A BIT CONTROVERSIAL*******

I have seen a lot of posts by people lately regarding how to address some one who is disabled or what to say /not say to them

 To be honest I find it all a bit silly

 Am not the most Politically correct person out there but as far as am concerned calling me by my name is fine. Honestly I will even answer to "thingy" or "you" even "Fred" just try not to use Jennifer too much as when I get my full name it usual means am in trouble.

I get it, some people feel that being called "wheelchair bound" "disabled" or "handicapped" (too be honest although am not fussed I try to refrain from the last one as it seems a bit degrading). They feel that these terms and others define them or that they are being defined by their disability. I am an amputee because I have had an amputation, but that does not define who I am. Am lots of things (play nice now), am a mother, wife, daughter, student, blogger, Therapist as well. I am however bound to my wheelchair to some degree, without my wheelchair I would not get very far at all or get out so the term "wheelchair bound" is accurate as far as am concerned. Disabled to me is accurate as well there are lots of things I can not do and I am not abled bodied either.

why do people get so bent out of shape by these terms and the use of them?

I have a theory ( and no its not about bunnies! and if you get that reference high five.).

From most (not all and am by no means taring every one with the same brush here), of the articles I have read there seems to be three types of people that find this terminology offensive:

"The do gooder" - People who have never suffered any kind of disability or health concern in their life but think they have the right to voice an opinion on this subject as an expert.

"The world owes me" - People,  who for what ever reason,  have become more and more bitter over time due to their disability or illness. They feel, rightly or wrongly,what has happened/wrong  to/ with them that it is every bodies fault ( I get this to some degree, its not easy to keep a positive outlook going every single day when you feel so useless and / or limited by whats wrong and the world will not accept you for you and most activities or places are not accessible, every one has their off days). But really? The world doesn't owe you jack squat mate! Yes maybe a helping hand now and then to do things or access places.  Use what you have to your advantage, make the most of it and start living because before you know it life has just passed you by.

"My life is over or why cant this have happened  to some one else"  -  People who have ended up with an illness or becoming disabled later in life through no fault of their own. Again I understand. One minute being healthy and able to do any thing or go any where, your future looking bright and shinny and the world at your feet, to within 24 hours having all this ripped away from you. It is a hard pill to swallow. It is also a bloody hard thing to get used to and come to terms with -  fighting pain, depression, friends walking away because they don't know how to react or cope, people staring, suddenly having limits put on as to what you can do, places you can go or even things you can wear.  ( I went through all of this for nearly a year and a half then decided I had enough. Now I wear what I want, I pimp my prosthesis and rock Darth Vader on one of them, wear shoes that make people stare and generally make the world bend to me.) I understand that this takes time , but some people just never adjust, adapt and learn to live with it they are too busy lamenting what they have lost.

How about instead of trying to define what we should and should not be called or what "boxes" "abled" bodied people put disabled people in, or in fact whether or not people should or should not help us with bags or opening bloody doors for us , why don't we just agree that we are just people with a difference? What terminology is used really doesn't matter does it? not unless it is meant in a bullying, nasty, creepy kind of demoralizing way. Unless some one is deliberately putting you down you define who you are, you put the limits on yourself its not a "us" and "them" thing, or at least it shouldn't be. The government have already tried to turn society against us people do not need to be helping them to do that. The next time some one asks what you like to be called make a joke or light of it , it an only offend if you choose to let it. The next time some one offers you help be grateful and smile, the next time some one opens a door for you say thank you you ungrateful git. The barriers are there and they will never go if people start to make other people feel uncomfortable to approach or help, terrified to say anything to us or engage with us or even invite us some where in case they offend, upset or seen to discriminate.

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

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

And the world moves on…

 

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

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

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

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

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

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

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

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

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

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 !

TIME GOES SO QUICK....

So Annabelle 16th birthday has came and gone already. Michael is coming up twenty one in less then a week and Eden ( my second eldest daughter ), turns nine the day after Mikey.

As well as getting crowned in Disney we took her for a meal in town. A restaurant called D'Aqua in Sunderland.

Now this restaurant does not have disabled access, in fact there is quiet a steep set of steps at the front of the premises. However upon ringing them they helped to solve the problem and told me that there would be no issues for me to use the kitchen access at the back of the building as it was ramped with one small step to negotiate,

The staff and owners bent over backwards for myself and to accommodate the wheelchair and where fantastic with the little ones as well. Nothing was too much trouble for them and they made the children feel welcome. even thought it is what I would class as a up market/ chic restaurant. As for myself I felt very comfortable and not once did they make me feel as if I was an inconvenience ! Bravo ! unfortunately there are not many places around where they bother to take into account your whole experience including how you feel and make you feel welcome.

So if you are looking for somewhere a little different and that little bit special I would defiantly give this place a go.

If you do have mobility issues like myself then do ring them They are very accommodating (within reason of course), and are more then happy to help if they can, The prices where good and the food quality was out of this world. My kids can be fussy eaters especially Tyler as he has sensory ASD, but they left nothing and even asked for more.

 The cake we had made for her by Bella Sweet delights, I will put the link for both the restaurant and Bella at the end of this blog should you be interested.

The limb center meeting about the bleeding stumps and coldness of the legs went better then expected. They are sending me for a scan of my legs as although they have a good pulse they could be a narrowing of the arteries or a blockage which is causing the issue.

This has had to be referred from the GPs  so as yet still waiting on an appointment.

The kitchen is now looking more like a kitchen. We finally got a sink back and cupboards to put things away. Still waiting on flooring but we do have the holes fixed with ply wood over the top, An extractor fan and tilling still need to be done so we can then decorate but still missing skirting boards.

This has now been on going for  6 or 7 weeks now so starting to get a little sick and tired of it all.

The last thing I want to mention is help for anyone who might be looking or thinking of going back to work.

Don't think that there is no help out there as if you need support, help with your travel needs or specialist equipment then it is available through Access to Work.

As well as this there is a little known about incentive for employers to take you on as well. There are funds available for the prospective employer to have adaptations done at no expense to them as well as money for taking you on. There is no cost to the employer for any help or equipment supplied. This can include things like chairs, desks or wrist rests and many more things.


Next time I will be reviewing the services used for Toyahs birthday, my charity head shave, Sun FM interview and help being put in place for the exams (hopefully ).

I would love feed back on this blog so please feel free to share and comment and if there is anything in particular you would like me to look into or have a question about then please let me know.

On a lighter note..when moving please remember to take the one break off you have put on as you will end up going round in circles..just like I did because I forgot !

https://www.facebook.com/pages/Bellas-sweet-delights/619275984859630?fref=ts

http://www.dacqua.co.uk/

https://www.facebook.com/pages/DAcqua-Restaurant-and-Bar/158809227587465?fref=ts

https://www.gov.uk/access-to-work/overview

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 

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.

Time Moving on

So we are nearing the end of January 2014 and again things have moved on.

College/University is still going well and still achieving outstanding in all areas bar math, but its math, that can be forgiven and after all it was still a pass.

Thoughts have changed on which area I will specialize in as would like to combine CBT/ behaviorism with Psycho dynamic approach. With this in mind I have been looking at studying either a Masters or PHD. So this summer I will be looking for a placement to get experience in a therapy setting.

Since my own CB therapy I am refusing to let anything stand in my way or my dreams. This I have found is a difficult thing to do when you are disabled. You get so used to people telling you that you can't do this and you can’t do that and before you know it you believe them. Challenging that assumption is a hard road to walk (or wheel!) and it is so easy to sit back and believe them and give up. But if you did that look at how much you would miss out on.

To me the most difficult thing I have ever had to do was challenge that belief, accepting that this might be as good as it gets health wise and moving on. Although I enjoyed working prior to the amputation and in some respects after as well, dynamics do change when your disability is no longer something that people don't notice. You feel a burden, inconvenient as if you are getting special treatment as people are too scared of being labelled with disabled discrimination. It leaves you with a bad taste in your mouth. Always wondering if you were employed for your skills or because they were too scared to tell you were not good enough for it. Or was it the simple fact that they have to be seen as being diverse? Are colleagues helping because they want to or because they have too? in some respects it is more daunting going back into education as not only do you have all of this to contend with but the fact that the majority of people you will be mixing with have not had experience of someone in a wheelchair or an amputee with no or very little life experience behind them that will enable them to deal with it. In fact looking around college some have barely got out of the stage of getting pocket money and worrying about makeup and what you look like (which can cause issues as neither prosthesis nor a wheelchair are high item accessories!...I think I will take the pimped wheel chair this morning with the bling in purple because that's what’s in style this week...). But somehow these people seem to have more insight and more patience so there is hope yet for the human race. There is no second guessing about what people think as they are just as insecure as you are.

The results from the sleep clinic came back and I have sleep apnoea, so no surprise there. However this is at the rate of 40 times a night that it affects me which is really high. So I now have a CPAP machine to use at bed time. Apart from worrying it will give the husband a Dearth Vader fetish, it seemed to work well last night so lets see how things progress with that one. Still battling with the weight issue. I did do very well at Xmas and managed to not put on any extra weight and I have made myself a spread sheet for stats (btw passed IT module 95%) that I am checking every day. This is so I can control my own exercise and diet as at a glance I can see how much or how little I have done in a week/month but also how well behaved or what areas I need to sort out for my eating. AS for the split in the stump I have found some dressings that protect and cover so using those and it is working. Also I have had my appointment through for my MRI scan in two weeks so see what happens there. 

Looking to the future, there is not long before the experience of college is behind me and I face my next challenge of being on campus. Hoping also that the CPAP machine helps my energy levels and fibro and I can then exercise more which in turn will enable me to lose the weight I need. That’s when the real challenge starts. Can I leave the wheelchair behind or is it part of me for life?

TIME APART

It has been four month since I last wrote anything. To be honest I didn't see the point or writing unless there was something to write about and the last four month to some degree has been the same old same old....
However saying that certain things have happened.

Still trying to battle with the Fibromyalgia which has included and not limited to CB Therapy which didn't work for me, upping my exercise, changing my diet, playing around with the pain killers and just in case some herbal remedies.  So far the attacks are not as often unless I do something really silly like write, hold a book for too long or try to bake (Easter saw me laid up for over a week!)Still waiting on the Sleep clinic, off to there next week so lets see what happens.

With regards to my personal life I have re booked Disney for next year and I am happy to say that I have got my place at university to study Psychology in September.

 However as a disabled student I am still trying to get the college I am doing the first year with to complete a questionnaire I need done to enable me to be assessed by the University for the help I will  need whilst there.  I am glad to have something to look forward too as I am sick and  tired of being out of work even though I know it can not be helped.  I really don't understand how some people actually like this kind of life!  David is still working hard with his photography and my eldest is due to leave to go Staffordshire University in September. My eldest daughter is achieving well at school and I am very proud of both of them. I am unsure if I have mentioned this before but my youngest son Tyler has been diagnosed with ASD(autism Spectrum Disorder), which has proved to be challenging but very rewarding at the same time. It looks like last years trip to Florida helped him to adjust and accept certain things better so hence the reason why we have booked again, even if it kills me or breaks me, we are going back if it means it will benefit him.  Not to mention the brilliant time we all have as a family.
We have been told it is more social interaction that he has the issues with and is 2 year ahead in maths and reading then his year group/age and could sit his SATa now.  He is 98th percentile when it comes to using and understanding context and grammar of language....in other words he is a smart arse :)

The biggest thrill for me so far has been when I was asked to do a screen test  for a major film role but it is all hush hush so can say no more, but how many people get a chance to even do that, it was one hell of an experience !

Things with rehab and the amputation have came to a screeching halt am afraid.  Was trying to up the anti with the walking and being more independent (due to the fibro I can no longer self propell in the chair) and was using the recent nice weather to  try walking and physio in the park. It looks like I have developed a pressure point though.  Woke up 2 days ago, put my legs on, went to the bathroom (ooh which I forgot to tell you has now been fully adapted, we paid for all the decoration, the council paid for the adaptations)and when I took my legs back off it was bleeding right next to  my scar. After trying to get some information on what had happened and how to manage it (GPs as usual wanted nothing to do with it as it was down to my amputation and the district nurse couldn't do anything or suggest anything to do as it was not an open wound),  it looks like a problem with the legs so I need to go to the Freemans...but there is a problem you see....they will take my legs off me due to the fact am overweight for them.

Great choice eh? lose the legs, become totally housebound again (screwing up uni), and be a fat bird in a chair with less chance of losing weight (how do you lose weight when you can't get out of a sodden wheelchair?), or say nowt, wait for the pressure point to(hopefully) heal and keep trying to lose weight by exercise as well as diet (without starving yourself),praying the pressure point doesn't come back or get infected?

I am starting to wonder what help there is for amputees in the UK, or more specifically in the North East of England.  My experience's so far are not good. There seems to be no support network, or places to go to find out answers to everyday questions concerning pressure points or weight /exercise problems for example. It is very much a case of being bounced around from the doctors, nurses,limb centre,walk in centres and physio with many of them either unwilling to deal with you or just no understanding of what you are experiencing.

LIFE GOES ON

So not coping too well with the staying at home thing until my health is better.

Applied for a job today, just local and part time but lets see how it goes. Other then that still waiting to hear from the rheumatologist, as still need the ultra sound on my hands and the results from the x rays and bloods.
In the mean time I have opted to down grade from the morphine back to Tramadol for pain relief.  Unfortunately this doesn't work as well as the others but it gives some relief and I am hoping along with the Amitriptyline and the sleep clinic and therapy, it works.

Still doing the physiotherapy in the mornings, now up to 45 minutes each time but  without them I have a lot of pain and great difficulty in moving.  Some mornings I can't. So at least the exercise keeps me moving... literally

This is where are hoping to stay the next time we go to Florida.  The weather there was amazing and really helped  my legs and arthritis  This was when I noticed how bad things had got.  Whilst in Florida not only did the aches disappear but my mobility increased dramatically. Upon return to the UK it seemed to hit me in a matter of days.  Not only did the pains come back ten fold but my mobility suddenly dropped.

The  stumps are not doing so well either, due ton so if swelling and circulation issues. Will eventually have to bite the bullet and go back to the limb centre to be remeasured and re fitted for my legs. The only concern is that due to my considerable weight gain I may not be able to wear prosthetics. Trying to lose the weight should be easy in my mind, but as most of you are already aware of, not so easy in reality. But lets keep trying. I was once told by my granddad that you get out of life what you put in so if you give 110% you will get 110% back. So every day I start again and try.

HOW TIME FLY'S WHEN YOUR HAVING FUN....NOT

Well it is hard to believe that 5 month has gone by.

The road I have been  on has been a bumpy one to say the least, with lots of twists and turns along the way. The first thing I guess would be to mention what happened at the tribunal.  Well I lost but not after proving my point and making them very uncomfortable.  They turned up 6 suited and booted to my three, they had a lawyer I couldn't afford one so represented myself. His statements where contradicting and he even tried to say that I was in a wheelchair prior to this amputation which is untrue. Although I lost it felt really good to be able to take a stand for myself for a change and not be intimidated to back down.  The holiday was excellent!! Best thing ever and just what the doctor ordered for me.  Although the legs did blister and I had to spend at least one day with out my legs on, it did not put me off  from having fun and I have to say all the staff at the hotel and theme parks where very helpful so a big thank you and well done to Disney world. In fact they where so helpful that when we turned up we found out that they had put us on the second floor, bearing in mind I still cant do stairs. They immediately changed that for us and because the rooms where not wheelchair accessible ( although they where still roomy enough for me to get in and maneuver with my wheelchair) they provided a bath seat for me to use. The flight staff where brilliant with Thompson's as well we booked in premium economy for the extra leg room and it made all the difference to me. They where great with the wheelchair and the assistance on  and off the plane, getting rid of all the fears I had.  In fact I enjoyed the holiday so much we are planning to go back next year. Nearly all the rides where wheelchair or disabled access and everywhere we ate very accommodating  in fact so where all the shops and transport as well.

However, on my return things took a  turn for the worse.  Within two weeks of being back in the UK I started suffering with pains in my hands, fingers,wrists, shoulders and back. This was annoying to say the least as in Florida it had not effected me in fact the sunshine and the heat helped to improve my mobility greatly. Within a very short period of time I ended up on the sick and have since had to leave work altogether.  The doctors checked for rheumatoid arthritis as I already knew I had arthritis just not what type, but this came back negative.   I have tried liquid morphine, zoramorph and oxycontin which just ended up in server side effects and a lot of time staring at walls!
In the end I was referred to a rheumatologist at the hospital who thinks I may suffer from Fibromyalgia that is also causing chronic fatigue syndrome. To make sure they have x rayed my hands, taken more bloods and I am awaiting a ultra sound as well. Unfortunately this is something I will have for the rest of my life but symptoms can be elevated with exercise, help with sleep and medication as well as less stress and relaxation ( 6 kids(one being a hormonal teen), one dog, one cat and two kittens..really? they think I can cut stress out and relax). So the plan is they want me to attend a sleep clinic and start taking amitriptyline.  I already exercise every day due to the physio  I do and I am looking at ways to loose weight, so cross your fingers (cause I can't ) that it works.  I am hoping to get back to work once the pain of this is under control. Obviously the knock on effect it is having with my walking as using the crutches or wheeling myself around is extremely painful and it also can be connected to the pain I have in my stumps.
So at the moment  I am waiting to hear from the dole regarding ESA and have applied to University to study Psychology so hoping that comes through.
OOh before I go another thing to add to the list of things wrong I also have a stomach ulcer.....my life is great  :)

TEARS, TANTRUMS BUT NO TIARA'S

Sorry it has been a while since writing anything down.  The only excuse I have is life getting in the way.

so much has happened since the last time I sat here to talk to you, where to start?  From the beginning I guess.

I am doing good. After a few false starts with the physiotherapy, things started to get a lot better. I had some issues with blisters that we thought was down to the sockets or the liners not fitting properly, but what we found out was it was due to the stumps sweating. I know this sounds bizarre, it did to me when it was first mentioned, but every time I put my legs on any activity I do will heat them up, there fore they will start to get "sweaty."   So after some research ( as this had never been mentioned before) I found out how to care for my stumps and the liners to help prevent this from happening again.

So every night I take the legs off to rest the stumps.  I wash them down with warm water but no soap then dry them thoroughly.  Then I use a soft lint free cloth and warm water and wash the inside of the silicone liner and dry it off with a lint free towel.  Then I use a little bit of baby oil on the stumps just to make sure the skin doesn't dry out.  At bed time I use a specially formulated deodorant in roll on format.  no I know what you think deodorant for stumps, but this was actually recommended to me by my limb specialist. you put it on and let it dry leaving it over night then wash it off the next day. you must follow the directions .  so far it has reduced the redness I was getting from wearing my limbs and as long as it keeps the blisters away I will be happy.  Especially as I am off on holiday in 8 weeks.

The physiotherapist was so happy with my progress that they have now moved me on to elbow crutches in the house and for transferring, which means that I am sorted for my holidays.  I ended up losing my temper (surprise), for the umpteenth time when I couldn't get into the car the way they where showing me.  In the end my friend came round with her car and I worked it out on my own, sometimes i think it just takes them to show you the technique but for you to actually go out there and do it for yourself.  I also believe that when you do finally conquer those demons that it means more and does more good for your own self confidence.  I have missed out on a lot over the last couple of month due to be too scared to try things including my sons 8th birthday party, going out with my kids and the Jubilee celebrations at the park and beach with my family. But know am ready to go back to work in the office.
My current employer has been fantastic in supporting me during these last couple of month and just wished there where more companies out there who could be supportive of there employees regardless of what is wrong or whether a disability is involved or not.  I am not going to lie.  Going back to work is scaring me shitless !! I don't expect you to understand. I don't really understand other then to say that am scared of making a fool of myself and not wanting to be relying on any one for help.  In an ideal world I would be able to wait until all my rehab is over, out the wheelchair, no longer needing the taxis, no sticks, fully independent.. But needs must when the devil is knocking at your door as the saying goes and I do have holiday money to save up.  I think my main concern is two fold really.  One that something will happen, I will fall or something at work and show myself up (again), in front of every one I work with and second, I stick out like a sore thumb when I all want is to "fit" in and belong.  I have to rely on everyone for doors, for drinks, dinner etc.

I could leave work and go on ESA but I have no idea if I would be entitled to it and it would mean a hell of a drop of income.  Why would I not be entitled to it ? Well that brings me to my other bit about what is going on in my life at the moment.  I am currently taking a former employer to tribunal for discrimination and unfair dismissal.  Part of this is non payment of National Insurance, which means am missing a years worth of contributions.  This in turns means no benefits, this is why I had no choice but to rush straight into another job when I could have done with taking the time out for rehab to be honest.  So as you can see no idea about ESA.
As yet the former employer will not accept the claim and is trying to say that I am ...well...basically paranoid, but he is also trying to get out of the unfair dismissal part as well by trying to get it struck off.  Looking at my new employer and my past employer , the difference  is unbelievable .  The size of the companies is not much different  but the way they treat their employers is phenomenal !!

And finally the holiday. 8 weeks till I leave for Florida. The arguments I have had with Thompson's is unreal over the dinning plan and believe it or not they booked my wheelchair on the plane and although it was requested no assistance for getting on the aircraft or off it !!  I have asked Disney for a adapted ground floor room so lets see what we get. It has been suggested that I email the holiday company direct and see what happens, maybe I will.

However I am still waiting for my lottery win so I can buy better legs and enjoy my holiday,but still no tiara....