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....

ALL CHANGE....AGAIN !

Well my first physiotherapy  went really well and have had another one since then.

All concerns where laid to rest when I managed to impress them with a sit to stand from the wheelchair to the bars without using the bars for support. After 6 lengths of the bar they told me that if I could sit to stand from my chair to a zimmer frame then I could take the frame home! As I have always preformed better under pressure and in the face of a challenge, ( just take a look at the rest of my life!), I managed and felt rather proud  of my self to say the least.
I asked Emma my physiotherapist  for a prognosis based on what I had managed.  Although it was not fantastic I was really pleased with it.  Within 2 month I should be steady enough and confident enough to transfer from my chair to a front passenger seat of a car or another chair, using a swivel transfer.  Within 4 month (in time for my hols), I should be able to get into the office without my wheelchair, get around the house with out my chair and when out shopping etc using  mixture of sticks and the wheelchair.  This means that although I will still need a wheelchair to go away with as well as help on the plane etc , I should be able to transfer into the plan seat, use the toilets, transfer on to rides and sit at the dinner tables for meals.
They still think at least 6-9 month before am out of the wheelchair altogether and using just sticks/elbow crutches and 12-18 months before am fit and well.  This weeks physio went even better.  Since getting the frame to bring home I have been practising very hard with the stand to sits from the chair as you can see.  So much so that when I went on Thursday they took me out of the bars and give me a walker (frame with wheels), and I walked 35 meters !! I was ecstatic! We are aiming for 70 meters this week.

Obviously I was still concerned about work as the news was good for me but not so much for that.  After a telephone meeting with one of the managers of the company they agreed to support me through this period which was fantastic!!! So at the moment I am working from home for 16 hours over a 4 day period which fits great with my treatment and hospital appointments. This will be looked at again 2 month.
Although this does now mean that I am totally house bound and a recluse because I now only leave the house for appointments at physio and hospital.  Nothing more has been heard from the council re a ramp and unfortunately whilst out on Bank Holiday with my daughters, even with a wider solid ramp and wider doors, I still went off the ramp and nearly splatted on the floor !! David pushed too fast, the wheel at the front turned and it went off the edge.  With the speed David was pushing it didn't take much  for the momentum to take the rest of the chair off ! Lucky for me David caught the chair before it went completely off and lift it back onto the ramp.  Needless to say he is not allowed to push me up any more lol.

I still can't believe though that in this day and age there is still places that although refurbished not long ago don't have disabled access.  Last Saturday was my best friends wedding, but due to the premises not having disabled access  I was not able to attend the reception day or night.  I was disappointed and my friend was upset by this.  As to date I am still waiting for a reply from the company that owns the pub.  Will keep you informed.

NOT GOING TO PLAN

It is surprising how quickly things change..and not always for the good either.

So am not back at work since the near mishap with the taxi .  The directors of the company called to say that they could not guarantee  to have the type of car and ramps that I would need for my type of wheelchair. so contract ended.  So this left me in a bit of a dilemma. Have spent the last few days ringing around taxi companies to try and get the right kind of car/ramps for my chair so that I can get to work safely.  OH and who are happy to deal with access to work.  Not as easy as it sounds actually.

After talks with my employer I am now temporarily working from home. On top of all of this my hours are now having to be cut to enable me to go to Physiotherapy twice a week so I  can learn to walk again.  It means that things are in a fine balance at the moment and am going week to week with my job as at the end of the day it can not be worked from home on a permanent basis.   Not great news. So now looking for work to do from home on a permanent basis's until all the rehab is done and dusted and once more I can return to the world of full time employment in the big bad world.  It does however make me wonder how other wheelchair users get over this as I know  that I am not the only person out there that goes to work in  a wheelchair?

Things for the holiday coming along fine all the meals are now booked on site and the itinerary is done (trust me 9 of us we need one!) and passports being sent off for. We have even started the holiday clothes shop.  Although still stressing about paying it off , I have to believe that by hook or by crook I will do it, there is no way am disappointing those kids of mine!

 These are the liners for the new legs.  As you can see there are a screw/ratchet type of fitting and the liner its self are made of silicone type material.

My first Physio appointment is going to be this Thursday so hoping things go well.  Have been putting the legs on to try and get used to wearing them. As part of this been trying to stand at the table with them on to put pressure through them. I am a little concerned though as when I take the right one off there is some whitening on my scar that could be a pressure point .. guess we will have to wait and see.

The nerve damage is worse then it was and this causes a lot of problems during the day and at night I am finding it difficult to sleep with it.  Unfortunately they could only get me an appointment for mid July for the pain clinic.  Having  tried all the usual suspects it is time to move on to the big boys of drugs as well as alternative procedures that may be available to me.  These might include having something placed into my spine to release chemicals into my spine to block the pain / messages. Not so convinced with that one though


Some good news though for a change.  Heard from the grant department at Motability and we have been awarded the full funding for a Ford Galaxy that  I should have new issues transferring into with or with out my legs. Down side?  Of course there is ....it wont be delivered until August this year.

IT COULD ONLY HAPPEN TO ME

yet again it has been an eventful time for me.  I am beginning to think that "quiet" "normal" or "smoothly" applies to me and mine.

I think the biggest news is that I have finally got my legs back. So have been in touch with physio and have gone down on the waiting list. In the mean time I can put my legs on at home to get used to them as well as practicing standing up from the wheelchair  and putting weight through them when doing my boxing and weights.
Better news then last week when I got 3  streets away and realised that I hadn't picked them up!! Would the ambulance drivers go back for them..would they hell!! They where happier to take me all the way to the Freeman's for me to sit and do nothing.  Well that's not strictly true they weighed me and I had lost 4 and a half pound and found out that my new wheelchair, as well as being a nuisance to the ambulance service who complained constantly about trying to strap it in on the ambulance and refused to lift it over my step and tilted it instead even though i told them about my fall, didn't fit in the Freeman disabled toilets.  You can imagine the mood when I got home.  So I showed them and ate an Easter Egg.

I finally got up the guts to go out socially on a hen night last Friday. This proved to be interesting and quiet fun actually.  The hen of the night who is a long standing suffering friend had planned her route taking into account me and runs to the toilet etc.  All the pubs we went too where friendly, helpful and the toilets clean and accessible ( although if there was an award for the best it would be the Cooper Rose).  Over all I had a very fun night and didn't think about dancing from my wheelchair leaving me feeling like I had done a 48 hour workout at a gym 2 days later !! The one or two spoilers of the night ( and there always has to be one), was the lady who fell on me drunk and the man who thought that "people like that shouldn't be allowed in pubs and clubs".  To the lady who fell on me you could have at least replaced my drink and to the man who complained about me being there , karma is a bitch so watch out !!! You still have time ahead and you never know what is around the corner.

Well the grant form has gone and we have been awarded the grant for the ramp, surveyor been out and now just waiting for the work to start, however that could be months yet.  Have been to the holiday company and have booked the wheelchair on as well as priority booking for me as things are so behind schedule now that it seemed the best thing to do.  Lets face it I don't think I will be fit enough to walk around the theme parks all the time, in fact I will probably be lucky if I manage half the day walking on and off.  Thinking of videoing the holiday from a disabled point of view for my Youtube account but that is still in discussion.

But just to round things up you would never guess what happened to me on Monday?  I swear you could not make this up for a soap. The taxi driver was getting me out of the taxi at work and was in a hurry. Because his doors where not wide enough for my new wheelchair he had to angle the chair.  As he was bringing the chair down the ramps( telescopic) the chair wheel went off the ramp taking the big wheel and chair with it and there was me hanging sideways off the top of this ramp ! The driver couldn't straighten me up but tried to continue to pull me down the ramp which resulted in more of the chair going over the side. At this point I was a wreck.  If it hadn't been for a lovely man at the bus stop who missed his bus to hold me up to stop me from falling I dread to think what would have happened.  He had to tell the taxi driver to lift me at the same time as him to get me off the ramps and on to the ground. When I got on the ground my Tyre had  been pulled off the rim completely, you have the taxi driver trying to ram it back on and pysio from the NHS down stairs in the building where I work down trying to sort me out and get me in the building on the rim.   Anyway they got me into the building on the rim of the wheel made sure i was alright and got me sorted with a repair from wheelchair services and sent me home.  Damage sustained was tyre off, buckled rim, lose break, twisted support bar and a very very shaken jen!! Thats twice now in 3 month but at least this time I didnt hit the ground but still........

Its back to work tomorrow and to say am nervous is an understatement !

LIMITATIONS

It's nice to be doing a job where I know what am doing and am left to get on with it. They are a lovely people I work with and are very helpful with time off for hospital ,doctor's and phsyio.  Which is good really as on Wednesday this week I collect my re made sockets, so hoping the fitting goes well and I can stand in them with out too much pain in order to start my rehab.

It means I may have to re adjust my hours at work which may put a strain on our finances especially with the holiday not far away.  Did I not tell you? ooh well its only 166 days till we fly.  Thinking of re starting the You tube videos again to document what it is like to try and go on holiday with a disability as well. The new wheelchair is working better for my job not so much lower back pain or leg pain but still some. So finally relented and going to go see the doctor about it.
Not sure what they can do about it though as have exhausted all the possibilities for the nerve damage. The next ones are the big hitters such as the morphine types and the patches and not sure how that is going to effect me and working.  Still waiting to hear from the DWP and Access to Work regarding my complaint, looks like am being ignored so may have to resend them.  Filling in the grant form to try and get  a different car,something I can transfer into.

Have been referred to Mr Talkani again since the fall as well just to make sure that there is no permanent  damage.  OT are due out next week to do an assessment on cost and the surveyor to see if it is possible to lower the door frame, so still in the process of trying to get a ramp fitted. At this rate I will be up and walking by the time they get round to it.

Off on a hen night next Friday around the town so that should be exciting and a new experience for me. Not sure how I feel about  it but my friend has looked at all the pubs and planned a route with me in mind...still though it will be the first time in a year I have gone out on my own in the wheelchair for a social reason, so a little nervous to say the least.

And on a final note my bug bear at the moment The Big Body Squad.  People getting all kinds of benefits, adaptations,help and re housing including having a house specially built for them....all because they are over weight!!!!!!!!!!!!! and me???nothing, ziltch, Zero!!!!

Maybe I should just give up work, and get fatter then  I am, sprog a few more kids, just for the hell of it and I just might get the help I need......just a thought.

FEELINGS

It could only happen to me.

Returned home from work to a phone call from the hospital to say that they may have misdiagnosed me and my leg may be broken !! can you believe it. So yet again I had to tell work that I couldn't come and as I explained it to them it did occur to me that I wouldn't believe me.  This is on top of being off  for week due to the fall, then a weekend of food poisoning, Trinity walking into a lamp post and having the Monday off for OT.
So off I trundle to the hospital had the x rays re done and leg looked at again to be told that what they thought was a break was in fact my old Bike accident scar from the 1980's.  Got to love the health service.

On a more serious note however they told me that the soft tissue damage is worse then they thought and they have no idea how this is going to effect me for walking again.  I have been referred to talkani to take a look as they may be some more cracks in the cut point of the amputation. Also spoke to the Freeman's who have told me that they will have to see how bad the nerves have been damaged and that will determine if I can wear prosthetics.

The Hyundi is also up for renewal soon so at the moment looking around for a new car. Can't get a WAV as thanks to the government I no longer have my DLA for life, so instead we are looking at a car from Nisssan.

Have also found out that my ex employer has slated me in a reference to my new employer saying that I was difficult, hard to manage, didn't get on with other staff and wasn't flexible. I was devastated.  So have explained everything to my new employer but my job could still be on the line as it is subject to a good reference.
Just lately all of this has been getting at me .  Some of  you may be aware of this if you are following me on facebook or twitter.  I admire anyone who has to live there life full time in a wheelchair.  It hasn't  even been a year yet and am ready to quit.  Just trying to do the simple things like cook, clean or  even sit a desk or table  is difficult never mind shopping, washing getting ready and getting around.
Going to work is a nightmare. So tired. It's not easy the ramps are steep and the toilet is on the ground floor, through two buzzer doors,  I am on .the 3rd floor. All I want to do is concentrate on getting better, loosing the weight, doing the physio and walking again but that's not to be.  If I don't work David has no business, the kids have no life and there is certainly  no Florida holiday. It seems to be that every time I try to do something to better our life, fate or the cosmos comes along and kicks me in the face.  Feeling so low at the moment. I try not to winge but I hate seeing my reflection in mirrors or when I go past windows. No matter how hard I try or how much effort I put into getting ready I still feel a mess and guess I look it too. I hate this chair. I am terrified am going to be stuck in this for life or that am not going to be walking by the time the holiday comes around ( if we get there).

Things suck at the moment

No Progress

Just like everyone else I get down sometimes.  It's normal I guess, especially under the circumstances and I do feel guilty going on  and on about it in this blog and on facebook etc. But sometimes I feel life is a tad unfair to me especially at the moment.

I am thankful that since leaving work at the end of January I have since found a job with a great company in Newcastle. They are very supportive and a nice bunch of people to work with.  Unlike so many people at the moment who are struggling to find work, my luck held up, only on this matter though.

The access to work thing is still rumbling on.  Now they are saying I have to pay £170.00  to go to work. The reason being is I have a mobility car.  Now I cant get into the car as it is an 8 seater i800 by Hyundi which has a step up into it.  This means that at the moment without my legs I cant transfer into it.  However I would still like to work. So have applied to access to work for help as I cant get myself on and off paths, buses and metro either and have no one to take me .
I cant get a wheelchair accessible vehicle as to get one of those you have to have been awarded 5 years mobility payments and since having my carers reviewed they took away my life award for mobility and give it to me for 12 month instead.  This is due to  the government changing the rules for DLA in 2013.
So because I have a mobility car that at the moment until my rehab is over I cant use through no fault of my own and I still want to work I get charged 25p per mile to work and back.
Now I am not complaining about paying a contribution...not at all ! But what I am complaining about is the fact if I had my own car or no car and just got the payments I would get full funding.  How is that fair? I cold get a bus pass for £80 a month and use it for anything not just work.

On top of this other benefits have been cut as well.  So the more I earn the less I have.  It works out that I am approximately £200 -£300 worse off by having a better job !  And the government wonder why people don't want to go back to work. I understand what there trying to do, just not the way there doing it.  It is such a shame that a minority of people have screwed things up for the majority.

Still no further forward with the legs either.  They are still at the hospital and the appointment for my refit is not until April.  Good job really as I took a tumble out of my wheelchair last Thursday trying to get out of the house to go to work.  This is another bone of contention.  We have been given no adaptions as OT deemed that it wasn't cost effective! So since the amputation Me and David have tried to manage on our own. This includes trying to get in and out the house. There is a step up then the plastic door frame, so they have had to take me in and out like you would a pram. leaning back to get over the  step inside and over the door frame then having to tilt me forward to get the back wheels over.  Unfortunatly my eldest had to take me out for the taxi as David had to get the kids to school on time after the "prove you have an amputation" thing. He tilted me too far forward and I started to fall out of the chair, he tried to pull the chair back and it ended up having the effect of  flipping me out.  I landed very hard on my stump ends then fell onto my knees. Automatic reaction I suppose, I tried to put my foot down to stop myself from falling. Not a great idea. The stump board also fell onto the back of my stump. So there is me stuck on the floor, threatening  to hit the taxi driver if he tried to help me up again. so off to hospital I went.  Luckily nothing is broken but have sustained major soft tissue damage, so currently off work from my new job after just 2 days in major agony.

So with just 5 months to pay for the holiday, and things not looking great and 5 months to learn to walk for the holiday,  I sometimes think if I didn't have bad luck I would have no sodden luck at all!!

HAPPY NEW YEAR????

In such a short space of time so much has happened!

Honestly I don't know where to begin.  So much for a HAPPY new year.  Got a reply from the MP and from No10 Downing Street saying my concerns had been passed over to Ian Duncan Smith and "other ministers" more appropriate.  Meanwhile....Access to work have reviewed the case and now decided that I don't have to pay any VAT or Contributions, right in time for me NOT to have a job.

Yes no job.  Things with work ended up coming to a head near the end of January and me and my employer parted company.  It was rather unexpected for the both of us to say the least but lets just say I felt having to "project" my future time off as "unreasonable".  So now we are out of work and scrambling for something so we can keep paying for the holiday.  On the bright side after a week out of work I have managed to obtain an interview for Wednesday this week and a telephone interview tonight. So every one send good karma and keep fingers toes and other appendages crossed for me !

We are not doing any better on the leg front either.  Since leaving work though I have thrown myself into the physio incorporating  boxing and weights which I really do enjoy.  So much so that I have invested in my own set of weights and boxing set.  The down side here is that since Christmas I have actually gained 2stone !!!!
This came as a horrendous shock as I knew I had put on some weight but not that much.  My legs have been taken away from me for now until they can re size my liner and there is a discussion going on as to whether or not they will re cast me for the sockets.  Problem being is I am now over the threshold for those type of legs.
So in the vain of trying really hard to exercise more to lose weight I told the physio team to push me on Friday....now I cant move !

Its funny what life sometimes has in store for you. Take a look at me this time last year I wouldn't have seen my self still with out legs and jobless.  Enjoy life while you can you just never know whats around the corner !

PAYING TO WORK

Things have not gone according to plan at all!!


The Gabapenine didn't work but caused some interesting side effects though including hallucinations and spacing me out.  Not good for work when you do telephone sales.  To type one email that was only 5 lines long it took me 30 minutes, of course it didn't help that I deleted and retyped the same line numerous times.  So at the moment we are trying Amitriptyline which is an antidepressant.  I have had to up the dose to 4 a night but at the moment still suffering from nerve damage and still cant use the new legs :(


The side effects that I have encountered from these have been depression (go figure!), insomnia which as now went the other way and all I want to do is sleep, loss of appetite (not really a bad thing),bloating and spots. In the beginning it was difficult to function on them but now the side effects seem to be balancing themselves out, so I am still able to continue to go to work.


This brings me to my new bug bear so to speak, Work.


Since finding out that I had to make a choice of wheelchair or revision of my amputation, I have always been secure in the belief that the system/ government would support me during,through and after this.  How wrong have I been !


Those of you who do read this blog on a regular basis or who watched my You Tube videos know that I try not to make them political, but today I apologize as I am breaking this rule.
I write this blog in order to help people, to let people know they are not alone, for those who have a disabled/ amputee family member to better understand, but also so others who have been lucky not to have been effected by a disability an insight into what it is really like to go through/ live with something like this. There is a lot of things that have happened to me since this amputation that I haven't told you.  So here it goes....


When we made the decision to go ahead with this second amputation we consulted all the children, even the littlest one although she didn't understand .  We told the kids that it would be difficult with school runs, home life etc and especially the eldest two, that there would be more responsibility put on their young shoulders. We also told them not to worry that there was numerous government agencies out there to help us.  Yeah right !!


We tried to get things put in place before I went into hospital such as wheelchair ordered, aids that would be needed, help for the kids at school or to get them to school, adaptations we would need and last but not least ways of me being able to stay in work.  Not one government dept would help.  All we where told was they couldn't put anything in place until I had had the amputation.  So we thought "ok we understand" and left it at that.


It started in hospital. OT hadn't ordered the wheelchair for me going in so they had to try and rush something through so I spent 2 extra days in hospital, stuck in bed not being able to do anything for myself including the toilet and taking up a bed that could have been used for some one who needed it. Then they told me it had came in stock but did not have a van available to collect it until after the bank holiday weekend, bearing in mind the depot is only 10/15 minutes from the hospital.  So it looked like another 3 days in hospital stuck in the bed not being able to have any Independence and taking up a valuable space that some one could have needed.  My husband asked if he could not pick it up in order to let me come home that day and they agreed.  That was just the start of me, David and the kids being left to sort things out for ourselves.


The next incident happened shortly after coming out of hospital.  We informed the children' s schools of the family situation prior to going into hospital.  We rang around the various government bodies looking for help for David as apart from a few close friends, we had no other help around us for looking after me or doing the school runs. Nothing, ziltch. Not one government agency could help us, so David had to manage on his own which meant leaving me in bed until he got up, got the kids ready and done the school run. Now remember the schools and the fact that we told them of the situation? yes? well the collage and comprehensive where great, if any of them where going to complain it would be them. No it was the junior and infant schools that started.  They hassled my husband every morning when he was late demanding reasons, even if he had literally just missed the doors.  They sent letters night after night and then started to threaten us with the truant officer and court action. Yet the same days my husband was getting grief, parents who where ethnic or non British bringing their kids in non uniform but in tracksuits  and t shirts, where getting nothing !!!!


The next slap in the face from this government came in the form of OT. My house is private rented it has a family bathroom upstairs and a toilet and shower room downstairs.  My bedroom is downstairs opposite the down stairs bathroom along with my 7 year old room and the front door has a ledge and a step  to negotiate to go out the house. So we applied to OT for help for aids and adaptations in the home in order for me to be independent and also take some of the pressure off David.  We needed either a stair lift and bath chair/lift to use the upstairs bathroom or some form of adaptation to enable me to use the downstairs shower and a ramp to help me get out of the house at the front and at the back so I could at least get some fresh air during the day. After some telephone conversations and a home visit/assessment carried out we where lead to believe that they could help us, but they had to get a survey done first.  So a week later they came out with the man in question who looked around the house and took notes, he mentioned a few things that could be done, we where hopeful.  Ten minutes later our hopes where dashed.  They could give us a grant and do all these things but they weren't  going too as in his opinion eventually we would be over crowded, when the little ones got bigger.  The girls all share a bedroom you see, that goes from the front of the house to the back of the house, it is the same as two double bedrooms knocked into one. Also bear in mind that they are 12,6,5 and 2. So on that basis they turned down my application for adaptions including the ramp.  David, since May has had to lift me in and out of the house in my wheelchair every time I want or need to leave the house, no David then jen doesn't get in or out.  On top of this I can't have a shower/bath and have to relay on a bed bath/wash down every day....its not nice and not fair.
They suggested contacting the council for a house so we did, to be told that they don't have anything bigger then a 4 bedroom tough. Charming.


Then it became social services turn.  We contacted them to look for help in getting out and about socially as up till this point I didn't leave the house unless we could afford the £14 return taxi fare or it was a ambulance to the hospital for appointments.  I had been in the house for over a month.  After many weeks, yet again they told me that they couldn't help.  The most they could do was pay for an assistant for 6 hours a week but if I wanted to use this for social transport then I could only use 3hrs of help on this. So I don't go out. Since having the amputation I have left the house a handful of times for social things, in 7 month I have been out 6 times for social reasons. The only time I leave the house is for hospital appointments via ambulance or work. That's it.  I was off work just before xmas and in a 4 week period I left the house twice.We do have a car from mobility but I cant transfer into it as it has a step up and mobility won't do adaptations to it I would have to have a whole new application in which would mean finding a whole new deposit. On top of that you have to take a WAV over 5 years not 3 and due to getting my DLA assessed to include middle rate carers (due to having no legs and dependent on others), they took me off DLA for life and have only issued it till 2013. Therefore not enough length of time on my claim.

Now this is where it gets interesting.  I wanted to go back to work in Newcastle but didn't have any way of getting there. Can't use my car, cant use this wheelchair on my own as it is not light weight nor easy to propel especially up hill and on and off pavements etc ( 7 months and just got my assessment through now for a new chair,but have been told not to hold my breath....what a surprise).  Didn't have any one who could take me on and off the bus and metro so we applied to Access to Work for assistance.  They assessed me including my house hold income and how much I make at work. They agreed that I met the criteria for taxis to be funded in order to work. Hooray we cheered!!! finally some support and help of our glorious government! After all isn't it David Cameron our auspicious leader, who wants disabled people to get back into the community, back to work and become useful members of society? is it not our government who wants to bring back good old fashioned values and to repair broken Britain by family's being family's, bringing kids up with values and self of worth? Weren't they the ones who wanted to change the system to help the vulnerable people such as the elderly, children and the disabled and to make sure that they give support, help and money to the right people? uhhu.

I then got told that I had to contribute £4 per journey towards this .  Don't get me wrong, I don't  want anything for free, just some help/support so I can be all the government say they want. But how fair is it that I have to pay more then other disabled people or able bodied people to get work? I went back to my normal hours which where part time.  We soon released that the £32 I had to pay a week once worked into the household accounts meant that I was actually paying my boss(in theory) £30 a week !!!!  I was minus £30 a week worse off.  I had no choice but to ask my employer to put me onto full time hours which meant putting my progress with rehab second fiddle to making a living.  I have to get up at 5am every morning to do my exercises  before work and on a Monday I have to go to physio at 8.30 am for an hour to learn to walk then straight from there to work till 6pm.  The side effects off the tablets to block the nerve damage have to be dealt with at work, I have to just work through it, I can't afford to take time off , go on the sick until i find tablets that work or until am up and about as I am not on a salary.  I use holidays instead of loosing pay for hospital appointments and I take less for my lunch hour to make up the time I lose by going to physio once a week.

So most disabled people pay £12 a year and they can use local rail, ferry.metro and buses in Tyneside free. They can travel with a few time restrictions any where an as often they want for what ever reason.  Abled bodied people  pay approx £80 a month for a all zones bus pass allowing them with out restrictions to travel any where in Tyneside for any reason as often as they want.  Me.....I pay £128 a month to go to work 4 days a week. set times. No where else.  Now I have been told they wont pay the VAT that the taxi firm puts on the account, meaning I have to have another means tested assessment carried out.  This has 3 possible out comes. 

1)  they agree to up the payment and pay the previous VAT they have racked up on my account when they haven't paid it

2)  Agree to up the payment but refuse to pay the outstanding debt leaving me with debt

3) Refuse to up the payment not just leaving me in debt but also doubling my out going to £256 a month

Option number 3 leaves other issues.  Who in their right mind would pay £256 a month just to go to work 4 days a week to earn £6.50 an hour? So the choice is do I do that in order to try and provide for my kids, but making it harder or give up and go back on the sick which in itself is going to have repacussions?

It was my choice to have 6 children, I didn't have them to up my dole money so I could be on the sick spending all day watching Jeremy Kyle or sitting on my front door step in my PJs 10 in the morning drinking cans and smoking.  I want to work, I want to provide for my kids, show them that if they want anything out of life they have to work hard to get it, teaching them principles and morals, right from wrong. Like most families my low income is topped up by benefits but we want off this system, My husband started his own photography business and we are trying to get that up and running ( I think we are the only company in negative equity at the moment lol).  I have debt, who doesn't, that I want to clear and become debt free, I want to be able to have a nice house, to be able to buy it myself with enough room for us all including adaptions! I want to take my kids on holidays once a year. Up till now my kids got a couple of day trips away a year. They have never been on holiday.  The closest we came was from a journalist who knew some one in the press office of lego land and got us tickets last year and the Carers society give us a grant towards going away for petrol,car hire etc so we where able to go away for two nights. I wished you could have saw the kids faces. With us paying off our debt and my hours upping to full time we decided to push the boat out and book for our family's first proper holiday..abroad.  We are having to make sacrifices to save and pay for it but as you all must know by now we have booked to go to Walt Disney World in Florida this September.  Now it could be in jeopardy...thanks Mr Cameron, do you want to tell the kids if it goes tits up?

Its not that am winging although it seems like it i know, and am not wanting special treatment, I just want to be treated fairly, to be treat like anyone else trying to bring a family up the right way in these hard times. This government wants to make more cuts to disabled benefits, including means testing DLA more and changing the rules, and now assessments to see if you can do any work at all, regardless if it helps you financially or makes things worse.  This on top of housing benefit reforms and already changing the incapacity benefit and removing the linked in period, forcing thousands to lose their saftey net if they found they couldnt cope with work because of their disability, but who are now too scared to give up work as it would put them into poverty.

Its time this country and its politicians no matter which party they belong too (lets face it there all as bad as each other), took off the blinkers and got rid of this "I am alright jack " attitude. You ever heard the saying Mr Cameron, "monkey see monkey do?" I can not be the only one effected like this.  I wont be a silent voice any more.

It comes to something when your own government discriminate against you.  Think I can sue them?