sarah17779

THIS IS MY STORY AND WHY RAISING MONEY FOR SHINGLES MEAN SO MUCH FOR ME: I woke up one morning (4/9/2011) rubbing my right eye as i thought something had got in it, i carried on with the day washing it out and rubbing as i still thought i had something in it. I thought nothing of this and carried on with my day. well….. The next day my eye was very red and sore so i ring up the doctors, i go to the doctors and they looked at it and the next minute they are sending me up to the eye clinic. I am at the eye clinic and the doctors there didn't really know what was going on so they give me eye drops and medication. Over the next couple of days my eye get worse my eye is so red my eyelid is all swollen and closed and my eye is weeping , i go back up to the hospital and still they don't know what is happening, different eye drops and different tablets. My eye is getting worse and i go back to the eye clinic where they started to do tests and other doctors started to look at my eye as they had not seen this before and then one comes out with i think you have shingles as i had a rash on the same side of my face going from my eye to my hairline, so i left with loads more medications. I was getting very ill i had to give up work and my social activities as i couldn't hardly see and my eye was really bad weeping all the time and very itchy and i was in a lot of pain in my head too. I was at home for a couple of months getting better plus going back and forth to the hospital checking up on my eye. I was getting a lot of help from my friends as i couldn't see very well, but when out and about i had people staring at me and making comments behind my back, at this stage i felt like a freak i hated my life and asked why me? My eye started to heal but still my eyelid wasn't opening and i couldn't see out of my eye and i didn't know what was going, at this stage i had to go to the opticians as my left eye is my lazy eye and my right eye used to do all my work so now i was struggling to see things, so the next thing i had to wear glasses, it did take me a long time to get them or even to see an optician as none of them would entertain me as i was under the eye people at the hospital i had to get a letter from the hospital to get an appointment at the opticians so i could get glasses to help me. i can remember i bought a cheap pair to start of with thinking that i wouldn't need glasses for long and that i would be fine. Not long after getting rid of the last lot of shingles i got them again all down the side of my face and once again i was on the shingles medication and wasn't able to do much as i was in so much pain with my head i just didn't know what was going on. i was sent to the pain clinic at the hospital and started to see them every week, one time i was given an injection in the back of my head to help with the nerve pain a little time i found out i was allergic to this and was rushed into a&e due to an allergic reaction. i just couldn’t cope, the pain was outrageous. This was just the start of my nightmare………….. Not long had i got shingles again the same place on the right hand side of my face, time after time as soon as one bout of shingles had gone i would get it again. I just didn't understand why i kept on getting it and nor did the doctors either, I was admitted in and out of hospital going to different clinics seeing people about shingles and the amount of pain i was in too. weeks, months and turned into years i just kept on getting shingles and always in the same place from neck up wards. Not only was i suffering with shingles and the pain but, i was suffering with ear/throat infections lost count on them. I got a really bad infection in my throat where i had lost my voice for well over 6 months i was also admitted into hospital for this too and it was very swollen i couldn't swallow and i was having problems eating solid food. I was a subject of getting poke and prodded by so many different doctors……… Months had gone past and i was still getting shingles, not only was i still suffering from shingles but i had suffered from all the complications of shingles. I was also had suspected meningitis 4 times of which this also hospitalised me where i had lumbar puncture and put on the medication for meningitis, i was very poorly as i was having shingles and then being told you may have meningitis. Thought i was going to die. Still i was getting shingles and and there were days i couldn't get out of bed, i was thinking what else could i go through, well my face on the left had side had collapsed and i could speak well and i kept on dribbling, i find out i am suffering with ramsay hunt syndrome / bells palsy. This all i needed this took months for it to heal and still to this day i dribble and specially if i lie on the left hand side i dribble. I'm always slurping and i am scared to eat out or in front of my friends sometimes. I still was getting admitted in and out of hospital and just no one can help me even though i have been all over the Uk visiting different doctors. So i decided to look for a doctor that might be able to help me and yes i came across a doctor who dealt with pains in the head. BUT he was private and he dealt with nhs patients on special occasions, so i go to my doctor and spoke to him to see if he would write a letter to him and the next couple of weeks went by and the next thing i got an appointment to go and see him in london, i thought wow maybe i could get some help, he has been doing a number of different things that other doctors have not done and also i was admitted into the hospital in london to be put through intravenous drugs for a couple of hours every so many hours apart, i started to get the side effects and wasn't well at all but that was part of the procedure. I have also seen someone in the eye clinic who i thought had given me hope about opening my eyelid, they said that they could cut so much of my eyelid out so that would open, as the eyelid stretches anyways so it would stretch to blink, but now he thinks that it is a bad idea as he thinks that my eyelid would stay open and as my eye has a problem to light it would give me more problems than it is being closed all the time. So this was a massive disappointment to me thinking that i was going to have a normal sort of eye even though i can't see out of that eye. Overall so far i have had shingles 35 times now since the 4/9/2011 and i will continue to keep on getting them for the rest of my life so i have been told, doctors have not come across anyone like me, i have visited many doctors across the country in many different hospitals such as Liverpool, Nottingham, Mansfield, Scunthorpe, Leicester, Sheffield, LIncoln, London eye hospital and charing cross in london where i am getting treatment now. I live alone and i have been through my illnesses on my own as i don’t have any friends as i have shut myself away sort of thing, I can't go out like my friends as of the noise as i can't cope with noise and all the flashing lights either, i have had to give up my social activities of which i absolutely loved as i was a member of local brass bands playing instruments and also i was teaching beginners to read music and play a brass instrument voluntarily, i loved this so much, well i loved everything in my passed life i used to do there are just little things such as wearing makeup before and now i can't. I have been so depressed that i've gone and seen a counsellor about but to be honest i didn't find this very much help at all. since i don't have any friends around where i live i have also seeked other councils such as kent as that's where all my friends are and who are willing to help me, but the council won't help me so i am stuck in my first floor flat like a prisoner as i cannot get out of bed some days due to the pain, so i go without meals etc etc and i have collapsed at home where i have had a knife impaled in my arm where i have needed surgery to have it removed and still when i was at home i got no help from the social services as i only had one arm to do things with so you can see i have so struggled being on my own, i am still trying to move from lincoln to kent where i know i will get all the help possible when i am so poorly, but still i need help with this too. I wake up everyday praying to have a good day and not be in no more pain in my head and not to have shingles again and to come off all my meds as i am on so many i am like a chemist. I can't do much and take each day as it comes i do like to draw and a lot of my drawings comes from the pain and anger of what i have been suffering and this has given me inspiration to help raise money by selling my drawings to get more research and better medication for shingles in the young as everyone always associate shingles to be in the elderly of which is totally wrong so i am asking for help to set up a charity for the younger generation as someone needs to start researching for better medications for shingles as there is no money in the government for this so i need help to do this please can anyone help me. sarah17779 joined Society6 on November 7, 2016

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THIS IS MY STORY AND WHY RAISING MONEY FOR SHINGLES MEAN SO MUCH FOR ME: I woke up one morning (4/9/2011) rubbing my right eye as i thought something had got in it, i carried on with the day washing it out and rubbing as i still thought i had something in it. I thought nothing of this and carried on with my day. well….. The next day my eye was very red and sore so i ring up the doctors, i go to the doctors and they looked at it and the next minute they are sending me up to the eye clinic. I am at the eye clinic and the doctors there didn't really know what was going on so they give me eye drops and medication. Over the next couple of days my eye get worse my eye is so red my eyelid is all swollen and closed and my eye is weeping , i go back up to the hospital and still they don't know what is happening, different eye drops and different tablets. My eye is getting worse and i go back to the eye clinic where they started to do tests and other doctors started to look at my eye as they had not seen this before and then one comes out with i think you have shingles as i had a rash on the same side of my face going from my eye to my hairline, so i left with loads more medications. I was getting very ill i had to give up work and my social activities as i couldn't hardly see and my eye was really bad weeping all the time and very itchy and i was in a lot of pain in my head too. I was at home for a couple of months getting better plus going back and forth to the hospital checking up on my eye. I was getting a lot of help from my friends as i couldn't see very well, but when out and about i had people staring at me and making comments behind my back, at this stage i felt like a freak i hated my life and asked why me? My eye started to heal but still my eyelid wasn't opening and i couldn't see out of my eye and i didn't know what was going, at this stage i had to go to the opticians as my left eye is my lazy eye and my right eye used to do all my work so now i was struggling to see things, so the next thing i had to wear glasses, it did take me a long time to get them or even to see an optician as none of them would entertain me as i was under the eye people at the hospital i had to get a letter from the hospital to get an appointment at the opticians so i could get glasses to help me. i can remember i bought a cheap pair to start of with thinking that i wouldn't need glasses for long and that i would be fine. Not long after getting rid of the last lot of shingles i got them again all down the side of my face and once again i was on the shingles medication and wasn't able to do much as i was in so much pain with my head i just didn't know what was going on. i was sent to the pain clinic at the hospital and started to see them every week, one time i was given an injection in the back of my head to help with the nerve pain a little time i found out i was allergic to this and was rushed into a&e due to an allergic reaction. i just couldn’t cope, the pain was outrageous. This was just the start of my nightmare………….. Not long had i got shingles again the same place on the right hand side of my face, time after time as soon as one bout of shingles had gone i would get it again. I just didn't understand why i kept on getting it and nor did the doctors either, I was admitted in and out of hospital going to different clinics seeing people about shingles and the amount of pain i was in too. weeks, months and turned into years i just kept on getting shingles and always in the same place from neck up wards. Not only was i suffering with shingles and the pain but, i was suffering with ear/throat infections lost count on them. I got a really bad infection in my throat where i had lost my voice for well over 6 months i was also admitted into hospital for this too and it was very swollen i couldn't swallow and i was having problems eating solid food. I was a subject of getting poke and prodded by so many different doctors……… Months had gone past and i was still getting shingles, not only was i still suffering from shingles but i had suffered from all the complications of shingles. I was also had suspected meningitis 4 times of which this also hospitalised me where i had lumbar puncture and put on the medication for meningitis, i was very poorly as i was having shingles and then being told you may have meningitis. Thought i was going to die. Still i was getting shingles and and there were days i couldn't get out of bed, i was thinking what else could i go through, well my face on the left had side had collapsed and i could speak well and i kept on dribbling, i find out i am suffering with ramsay hunt syndrome / bells palsy. This all i needed this took months for it to heal and still to this day i dribble and specially if i lie on the left hand side i dribble. I'm always slurping and i am scared to eat out or in front of my friends sometimes. I still was getting admitted in and out of hospital and just no one can help me even though i have been all over the Uk visiting different doctors. So i decided to look for a doctor that might be able to help me and yes i came across a doctor who dealt with pains in the head. BUT he was private and he dealt with nhs patients on special occasions, so i go to my doctor and spoke to him to see if he would write a letter to him and the next couple of weeks went by and the next thing i got an appointment to go and see him in london, i thought wow maybe i could get some help, he has been doing a number of different things that other doctors have not done and also i was admitted into the hospital in london to be put through intravenous drugs for a couple of hours every so many hours apart, i started to get the side effects and wasn't well at all but that was part of the procedure. I have also seen someone in the eye clinic who i thought had given me hope about opening my eyelid, they said that they could cut so much of my eyelid out so that would open, as the eyelid stretches anyways so it would stretch to blink, but now he thinks that it is a bad idea as he thinks that my eyelid would stay open and as my eye has a problem to light it would give me more problems than it is being closed all the time. So this was a massive disappointment to me thinking that i was going to have a normal sort of eye even though i can't see out of that eye. Overall so far i have had shingles 35 times now since the 4/9/2011 and i will continue to keep on getting them for the rest of my life so i have been told, doctors have not come across anyone like me, i have visited many doctors across the country in many different hospitals such as Liverpool, Nottingham, Mansfield, Scunthorpe, Leicester, Sheffield, LIncoln, London eye hospital and charing cross in london where i am getting treatment now. I live alone and i have been through my illnesses on my own as i don’t have any friends as i have shut myself away sort of thing, I can't go out like my friends as of the noise as i can't cope with noise and all the flashing lights either, i have had to give up my social activities of which i absolutely loved as i was a member of local brass bands playing instruments and also i was teaching beginners to read music and play a brass instrument voluntarily, i loved this so much, well i loved everything in my passed life i used to do there are just little things such as wearing makeup before and now i can't. I have been so depressed that i've gone and seen a counsellor about but to be honest i didn't find this very much help at all. since i don't have any friends around where i live i have also seeked other councils such as kent as that's where all my friends are and who are willing to help me, but the council won't help me so i am stuck in my first floor flat like a prisoner as i cannot get out of bed some days due to the pain, so i go without meals etc etc and i have collapsed at home where i have had a knife impaled in my arm where i have needed surgery to have it removed and still when i was at home i got no help from the social services as i only had one arm to do things with so you can see i have so struggled being on my own, i am still trying to move from lincoln to kent where i know i will get all the help possible when i am so poorly, but still i need help with this too. I wake up everyday praying to have a good day and not be in no more pain in my head and not to have shingles again and to come off all my meds as i am on so many i am like a chemist. I can't do much and take each day as it comes i do like to draw and a lot of my drawings comes from the pain and anger of what i have been suffering and this has given me inspiration to help raise money by selling my drawings to get more research and better medication for shingles in the young as everyone always associate shingles to be in the elderly of which is totally wrong so i am asking for help to set up a charity for the younger generation as someone needs to start researching for better medications for shingles as there is no money in the government for this so i need help to do this please can anyone help me.

sarah17779 joined Society6 on November 7, 2016.

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