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.
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?
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