Today I've decided to link my youtube channel instead of writing because my cursor keeps highlighting and deleting what I have written which is driving me mad! Just writing this has taken 4 attempts and I had written 3 paragraphs but lost it all!! To be honest the videos were so spontaneous I think I've said it all. I was surprised by how emotional I became but I have chosen to share them because I want to encourage other sufferers to not feel ashamed or embarrassed by their conditions. Especially the hard times.
It's a frightening thing to be so vulnerable on youtube but if these videos help just one person feel less isolated, alone and misunderstood then making myself vulnerable is worth it.
I dream of creating a youtube community where people can support and understand each other and inspire one another to carry on the fight for a better quality of life despite their illness.
https://youtu.be/S60424Y3NEo
https://youtu.be/gkplmyyy-Y8
https://youtu.be/Zz0bUrA1BoY
https://youtu.be/CUJ86u-UhiM
Wednesday 22 July 2015
Saturday 11 July 2015
The joy of the benefits system.
Well, to say these past two weeks have been stressful would be a huge understatement....
It has been tougher then tough.
First came the letter telling me that I had attended a medical exam and the assessor had deemed me fit to work and as a result my claim for employment support allowance had stopped and I was being taken out the system. Despite the fact that each time they've requested a medical certificate I have indeed sent in a medical certificate I only every received one payment which was back in April. Since then Tony and I have been surviving on my disability living allowance and his carer's allowance (his being £62.00 a week and mine just about covering our monthly bills, not exactly what it is designed for but needs must if we didn't want to be £300 over drawn every month with no electric) I have always vowed that my blog and youtube channel will be honest, an honest account of what it is like to live with chronic disease and disability and as much as it pains me to write this and as embarrassed I am to admit it things have been so hard most of our food we have gotten from the local food bank. I can't believe that things have gotten that tough but they have. I cannot put into words the guilt I carry around about that.
When you are genuinely unwell and reduced to living on benefits because you have to rather then you want to the whole system makes you feel like a social outcast and that you should be utterly ashamed of yourself and when I sit and really think about the guilt I carry around I have to remind myself that the only thing that I am truly guilty of is having an incurable disease. I try to talk to myself (I know that sounds a bit mad) as if I was trying to comfort someone else in my shoes. Then I try to listen.
Anyway, back to my ESA claim. I filled in their 22 page health questionnaire and handed it in at my local job centre, not an easy task when you have crippling hand pain due to dodgy ligaments and early on set arthritis but I did it none the less. I'm so glad I went to all that trouble when now they have shut down my claim and can't carry the questionnaire over to the new claim. I can hear you asking how I could ever fail a health exam with my extended and complex health needs and disabiliaty but here's the thing. I never did attend a medical. I was never even invited to attend a medical. When I rang the helpline (and eventually got to talk to someone after being on hold for 37 minutes) they admitted that it was a clerical error their end but their was 'nothing they could do' and I would have to make a whole new claim which could take up to 3 months to process.
Again with the painful honesty, I cried down the phone to the poor woman on the other end and when I hung up I sobbed into my hands. Really sobbed.
The following day I planned my day to totally dedicate it to making a new claim again, I dug out all the relevant forms and letters that I knew I needed to give them (hospital addresses etc). Then the post arrived with a letter that would wind me and bring more stressed out tears.
I received a letter from my local council telling me that the department for work and pensions who are in charge of the ESA system had been in touch with them and told them that I had been cleared for work and as a result they were suspending our claim for housing and council tax benefit. Honestly the stress and anxiety that letter caused and is still causing is enough to drive anybody insane. We are now down not only the ESA but also my housing and council tax leaving us with full rent and rates to pay until this mess gets sorted out.
Once I calmed down I made the call to the ESA people to put in a new claim. I was on hold for 46 minutes this time and when I did eventually get through we got halfway through the new claim when the woman's system crashed and she vowed to ring me back within 10 minutes. 5 hours later and I rang them again. After being on hold this time for 25 minutes a message came over to tell me they were now closed and to call again tomorrow (or something along those lines)
So now we go into the third day. I tried ringing my council but after being on hold for what felt like forever I decided to hang up and call the ESA line again as that felt most important. This time thank goodness I did get through and managed to get all the way through the claim.
Although the ESA is a joint claim for Tony and I as I am technically the one unable to work I am the one who has to make all the phone calls and fill out all the forms. How can this possibly be right when you're dealing with a benefit that is given to people who are unable to work through disability or long term illness? Are our lives not stressful enough? Do we already not have to strive harder then anyone else to not quite ever be up to par? Why would anybody thing it is a good idea to put so much more stress on people who are in situations they would do anything to get out of?
I am sorry that this is such a moany blog and I am grateful that I live in a country that has a benefits system but my word, the system is so screwed up. It preys on the sick and the weak. It makes everything as difficult as possible as if to turn them off from trying.
It makes me feel sick to my stomach to think about it all, it really does. At the moment we are officially up the creak without a paddle. The little savings we did have are all gone and until the 'rapid reclaim form' comes through so we can reapply for housing and council tax benefits we are getting in debt all the time with our housing association and the council tax. I have a deep faith and I do believe that this is all in God's hands but sometimes I wish he would show us in our present time that it will all work out in the end. Perhaps he could give us just a little view of the future, just a slither.
I wish I had the capacity to start something amazing to challenge the way that people who need benefits are treated. Something that would make people sit up and listen, to show the world how 'the others' are treated. I just do not have it in me, I'm too exhausted. I feel like I am fighting infection after infection at the moment on top of all of my normal symptoms (many of which are worsening all the time, the ones associated with my bowel anyway) and I am just exhausted.
We first applied for these benefits back in January and here we are July and we have only every had one payment and that was 3 months ago! I daren't think who else is going through this. People who haven't got the support of family and friends, it must be hellish.
Amelia-Rose is of course completely unaware of any of this, Tony and I have squeezed the belt so tight neither of us can barely breathe but we (as of yet) have managed to pay for her tap lessons and her swimming lessons and still give her her £3 a week pocket money. For all of those children whose families have no choice but to let on how tight things are the knowledge of something so grown up in such a small mind but be beyond daunting. Children shouldn't have to live through this. For goodness sake it's 2015,how the government STILL not have a FAIR system that WORKS and is effective? How can clerical errors be allowed to cause a family to go through months and months with no income?
I always think it's funny how if you owe these people money they will hound you day in day out but if they owe you money it's like going 3 rounds with Mike Tyson to get it back... if you can at all!!
Financial stress, I believe, is one of the worst you can face, there is no hiding from being broke, it surrounds you and eats away at you. I know I shouldn't cry over money but the stress of all of this has reduced me to tears more times then I can count and hundreds of thousands of families go through it every single day. Thousands of families who are guilty of nothing but being unable to work due to poor health or disability.
These things are not going to resolve themselves if we rely purely on our government to do so. We need to come together as a society to care for one another and look out for one another. To keep an eye on our friends and neighbours and step forward to help out if we can. People are capable of greatness whether it's individually or as a collective and we have to search ourselves for that seed that can be planted and become a huge and towering shelter for those in need.
I hope one day when my health allows it and we are settled ourselves I can do those things that I have just written about. I volunteer at the food bank and was one of the three people that originally came up with concept of helping the community but I want to do more then that, I want to create a something that people can turn to in their hour of need. Even if it is just a support group for people who are dealing with the benefits system in our country I want to help. I don't want anybody to experience what we are living through at the moment. I wouldn't wish this on anyone. Something needs to be done.
It has been tougher then tough.
First came the letter telling me that I had attended a medical exam and the assessor had deemed me fit to work and as a result my claim for employment support allowance had stopped and I was being taken out the system. Despite the fact that each time they've requested a medical certificate I have indeed sent in a medical certificate I only every received one payment which was back in April. Since then Tony and I have been surviving on my disability living allowance and his carer's allowance (his being £62.00 a week and mine just about covering our monthly bills, not exactly what it is designed for but needs must if we didn't want to be £300 over drawn every month with no electric) I have always vowed that my blog and youtube channel will be honest, an honest account of what it is like to live with chronic disease and disability and as much as it pains me to write this and as embarrassed I am to admit it things have been so hard most of our food we have gotten from the local food bank. I can't believe that things have gotten that tough but they have. I cannot put into words the guilt I carry around about that.
When you are genuinely unwell and reduced to living on benefits because you have to rather then you want to the whole system makes you feel like a social outcast and that you should be utterly ashamed of yourself and when I sit and really think about the guilt I carry around I have to remind myself that the only thing that I am truly guilty of is having an incurable disease. I try to talk to myself (I know that sounds a bit mad) as if I was trying to comfort someone else in my shoes. Then I try to listen.
Again with the painful honesty, I cried down the phone to the poor woman on the other end and when I hung up I sobbed into my hands. Really sobbed.
The following day I planned my day to totally dedicate it to making a new claim again, I dug out all the relevant forms and letters that I knew I needed to give them (hospital addresses etc). Then the post arrived with a letter that would wind me and bring more stressed out tears.
I received a letter from my local council telling me that the department for work and pensions who are in charge of the ESA system had been in touch with them and told them that I had been cleared for work and as a result they were suspending our claim for housing and council tax benefit. Honestly the stress and anxiety that letter caused and is still causing is enough to drive anybody insane. We are now down not only the ESA but also my housing and council tax leaving us with full rent and rates to pay until this mess gets sorted out.
Once I calmed down I made the call to the ESA people to put in a new claim. I was on hold for 46 minutes this time and when I did eventually get through we got halfway through the new claim when the woman's system crashed and she vowed to ring me back within 10 minutes. 5 hours later and I rang them again. After being on hold this time for 25 minutes a message came over to tell me they were now closed and to call again tomorrow (or something along those lines)
So now we go into the third day. I tried ringing my council but after being on hold for what felt like forever I decided to hang up and call the ESA line again as that felt most important. This time thank goodness I did get through and managed to get all the way through the claim.
Although the ESA is a joint claim for Tony and I as I am technically the one unable to work I am the one who has to make all the phone calls and fill out all the forms. How can this possibly be right when you're dealing with a benefit that is given to people who are unable to work through disability or long term illness? Are our lives not stressful enough? Do we already not have to strive harder then anyone else to not quite ever be up to par? Why would anybody thing it is a good idea to put so much more stress on people who are in situations they would do anything to get out of?
I am sorry that this is such a moany blog and I am grateful that I live in a country that has a benefits system but my word, the system is so screwed up. It preys on the sick and the weak. It makes everything as difficult as possible as if to turn them off from trying.
It makes me feel sick to my stomach to think about it all, it really does. At the moment we are officially up the creak without a paddle. The little savings we did have are all gone and until the 'rapid reclaim form' comes through so we can reapply for housing and council tax benefits we are getting in debt all the time with our housing association and the council tax. I have a deep faith and I do believe that this is all in God's hands but sometimes I wish he would show us in our present time that it will all work out in the end. Perhaps he could give us just a little view of the future, just a slither.
I wish I had the capacity to start something amazing to challenge the way that people who need benefits are treated. Something that would make people sit up and listen, to show the world how 'the others' are treated. I just do not have it in me, I'm too exhausted. I feel like I am fighting infection after infection at the moment on top of all of my normal symptoms (many of which are worsening all the time, the ones associated with my bowel anyway) and I am just exhausted.
We first applied for these benefits back in January and here we are July and we have only every had one payment and that was 3 months ago! I daren't think who else is going through this. People who haven't got the support of family and friends, it must be hellish.
Amelia-Rose is of course completely unaware of any of this, Tony and I have squeezed the belt so tight neither of us can barely breathe but we (as of yet) have managed to pay for her tap lessons and her swimming lessons and still give her her £3 a week pocket money. For all of those children whose families have no choice but to let on how tight things are the knowledge of something so grown up in such a small mind but be beyond daunting. Children shouldn't have to live through this. For goodness sake it's 2015,how the government STILL not have a FAIR system that WORKS and is effective? How can clerical errors be allowed to cause a family to go through months and months with no income?
I always think it's funny how if you owe these people money they will hound you day in day out but if they owe you money it's like going 3 rounds with Mike Tyson to get it back... if you can at all!!
Financial stress, I believe, is one of the worst you can face, there is no hiding from being broke, it surrounds you and eats away at you. I know I shouldn't cry over money but the stress of all of this has reduced me to tears more times then I can count and hundreds of thousands of families go through it every single day. Thousands of families who are guilty of nothing but being unable to work due to poor health or disability.
These things are not going to resolve themselves if we rely purely on our government to do so. We need to come together as a society to care for one another and look out for one another. To keep an eye on our friends and neighbours and step forward to help out if we can. People are capable of greatness whether it's individually or as a collective and we have to search ourselves for that seed that can be planted and become a huge and towering shelter for those in need.
I hope one day when my health allows it and we are settled ourselves I can do those things that I have just written about. I volunteer at the food bank and was one of the three people that originally came up with concept of helping the community but I want to do more then that, I want to create a something that people can turn to in their hour of need. Even if it is just a support group for people who are dealing with the benefits system in our country I want to help. I don't want anybody to experience what we are living through at the moment. I wouldn't wish this on anyone. Something needs to be done.
Tuesday 7 July 2015
Surgery update
Oooooookay people, we are on our way. Holy Moly this is actually going to happen. I am going to get a major organ taken out. There is a sentence I didn't think I would say.
When I had my ostomy surgery last year I always knew that the colon had to go and I knew the longer I had it still in tact the more the symptoms would increase and the more uncomfortable and poorly I would get. I felt so chipper after my surgery though all those symptoms felt a long way off. When I had to ostomy surgery my surgeon tried to empty the enormous amount of, well, you know what but he wasn't able to meaning I am quite literally full of, erm, you know what and it's been in there for over a year now. Gross I know.
In all honesty when I went to see my surgeon back in January he wanted to book me in for March but I was still deeply in shock about the last surgery without even knowing I was in shock. I thought I was doing great and just wasn't ready to think about more surgery. It wasn't until I spent mothering sunday afternoon on the bathroom floor crying, well, sobbing that I realised for the first time something was really wrong.
I guess admitting you have a problem is the first and hardest step and I am now waiting for counselling but Tony and I talk things through more then we did before.
I wish now that I had taken that first date (he actually offered me 3 in that appointment. I know I have bought this on myself but I wasn't even two months post op then and it all felt a bit too much) but I didn't and now it's my turn to live with the fallout. The symptoms are pretty awful to be honest. First there is the fact I am solid food intolerant again, then there's the horrendous spasms that will only ease if I sit on the toilet but by sitting on the toilet it triggers terrible back pain and pins and needles like you wouldn't believe in my legs!
Following on from those three symptoms there's the constant nausea that makes me feel like I have done a loop dee loop a thousand times. I also get headaches like I have never experienced in my life. Laying down in a dark room does nothing to touch these bad boys!
I suppose the most embarrassing would be the raging fevers that strike at any time. I can be listening to a child read at school (where I go in if I am well enough for an afternoon or two a week) and from nowhere be sweating buckets. I have had to start carrying a hanky with me because if I don't dab my forehead it will literally drip down my nose!!
It's also causing my joint pain to go crackers. I never knew the colon could be responsible for so much. Certainly not an increase in joint pain but indeed it does. (thanks to the NHS website for that nugget of information) I wake many days and feel like I have the flu. It really is pretty rotten. I talk with Tony about everything but I haven't really got anyone else to talk to. I don't want to upset my family, they have already been through so much with me that constantly complaining about my new rack of symptoms isn't going to help anybody else.
I think generally people simply don't know how ill I am. Obviously apart from my family no one else sees the illness. It's just there, a part of my life that is hidden below foundation, good blusher and a dollop of mascara and of course a great big smile.
My doctor explained to me that he is going to organise a nurse to come out to the house to show me how to use a disposable catheter as I've lost control of my bladder. (I know right, good times!) Possibly it's because of my colon but in a nutshell my bladder has over stretched which means it holds way too much liquid (which is exactly what happened to my colon and caused it to eventually fail) I use to be able to push down on my stomach to release the floods but now even that doesn't work very often meaning I am getting more and more and more uncomfortable and have to visit the bathroom every 30 minutes or so in a desperate bid to release it but to no avail.
So as you can see the colon has to go! I'm not sad about having to have a bag for the rest of my life but the idea of the operation itself, it's always nevre wracking going for surgery but this one feels bigger then the others.
There is no way we could afford to have it done privately which would make me feel so much more relaxed about the wrong thing but the surgeon has said if we could afford it then he would be happy to do the surgery in the NHS hospital and then have me transferred to the private hospital for the recovery. I have had nothing but traumatic experiences with my local hospital. They are so stretched for good nursing staff that if you go in as a disabled patient or have complex medical needs on top of the reason you are in hospital they just cannot cope with it.
The private hospital was just amazing when I had my last surgery, on top of having my own room Tony was allowed to stay with me day or night if I needed him and when I started to get very unwell with the infection the staff were 100% on top of it. They also really took in how much pain I was in without brushing it aside. When I've complained of pain in the past in NHS hospitals I've been told either it's in my mind (totally not true) or that there is nothing they can do and then ignored me and quite literally pulled the curtain around. I've also been passed a bloody tissue from under my bed and been told to put it in the bin myself when I pointed out it wasn't actually my bloody tissue. I've slept in bedding with stains and holes in and been left without water when Tony wasn't around to fill up my jug. I've never had problems with doctors or hospitals but I am terrified of staying in an NHS hospital after this op. The ill treatment of patients is terrible and I don't want to get an infection like last time and not come through it this time because it isn't picked up in time or taken seriously. I am sure this all sounds perfectly ridiculous to most but for me it's all about peace of mind and being in the best possible surroundings so I can make a full recovery as quickly as possible.
Like I say, the colon has to go. I need to take a deep breath and put it in God's hands. Everything will work out.
I hope!
If you would like to donate to our gofundme page created by a friend of our family please click the link and it will take you directly to our page. http://www.gofundme.com/foroursongbird
Wednesday 1 July 2015
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