So i bet your sat there thinking what a strange post but this and the next will make sence when you fully read them.
See when i first got Rheumatoid i didnt really use twitter but as i got sicker and less able i started useing it more and more and it became a place were i could talk to fellow people fellow football fans about my passion of football.
Ive had some great support from complete stranger like with my weigh and how im feeling low and just generally being able to talk. It may sound sad but i look forward to logging on because i know i will laugh and smile more than i do the rest of the day because even though you may not realise you have indeed pulled me through some really dark and lonely days. Just the hey vicky how are you? or what did you think of the game makes me feel like i have a friend who seeing me beyond the rheumatoid. When i crn't sleep there is always someone around. When i needed christmas present advise i had advise. When i needed some to make me feel better about have care agency in someone was there to make me laugh .. bet what time they would arrive and how long they would stay!
You see you may think you do nothing but you do, you make me smile and laugh and that is pricesless to me. Some ive really confided in about my life and we joke about football teams or we laugh about a football whos always in the news at transfer window lol.
You have become my friends, people who can make me laugh and simply because you just see me as me you see past the rheumatoid. But also i have meet many suffers through twitter and you give me inner strength to carry on as well.
Thank You, i hope you know who you are and i hope you are reading thing all of you.
x
Tuesday, 24 January 2012
Friday, 20 January 2012
Living with two life long conditions
So many people think it must be so hard to live with rheumatoid and yeah it is but you know its not my only invisible condition i actually have two. Rheumatoid and Techtrology Of Fallots.
So it all started when i was born in the local hospital and shortly after this i was taken to Birmingham Childrens Hospital a sick baby. I had 2 shunts done i was christened in the hospital as they wasn't sure i'd live then when i was 4 years old i had Open Heart Surgery to correct my condition as i had a hole in my heart. I was very sick between 0-4 and spent a lot of time in hospitals and people wonder why im not keen on hospitals or food! I have also had one cardiac catheter when i was younger. Although i had the repair im still likely to need more open heart surgery in the future and will need on going cardiology support.
Then as you know unless your new to my blog i gained rheumatoid at the age of 23 years old.
So since i was young ive known doctors and nurses infact they are part of my life. I mean ive been in hospitals all my life ive been poked and proded by professors, my consultants, by GPs even student doctors its part of life. I had test's done all my life, bloods, E.C.Gs are normal to me and Echocardiograms are just the norm and not forgetting the chest xrays always a joy!
So as you can see its always been the same 0-23 i was use to this constant doctor help and constant doctors involvment in my life. But when i turned 23 it was like OMG i see a lot of doctors because now i have 2 consultants, technically i should have 3 as my hearing isn't great either! I have 3 medical nurses GUCH (grown up congenital heart nurse), Rheumatoid Nurse and lets not forget my Asthma nurse! Then you have to look at the Occupational theropist, the Physiotheropist, the Dietician and even a councilor to help me deal with loosing my mum.
So you see you may not be able to see my invisible health problems and when you do know about them you dont realise the full back room staff thats behind me, helping me stay "vicky" shocking really just how many people are involved. I am so thankful for my team and the work/help/care/compassion they show to me every single day and visit. Also to my old team at the Childrens hospital both Cardiology, Audiology and at the QE in Birmingham Cardiology and my old rheumatology at worcester.
But essentially there are so many other people involved who keep me going ... just so many people to mention they are all fantastic people carer's, general hospital staff, receptionist, pharamcy, support workers, social worker and of course family and friends!
So i may be one person but i have many many people behind me who keep me together and make me smile.
Im use to doctors but if i hadnt been it would have been a shock at 23 to be introduced to the world of medical help i dont think i would have handled sitting in hospitals waiting or the constant appointments.
So it all started when i was born in the local hospital and shortly after this i was taken to Birmingham Childrens Hospital a sick baby. I had 2 shunts done i was christened in the hospital as they wasn't sure i'd live then when i was 4 years old i had Open Heart Surgery to correct my condition as i had a hole in my heart. I was very sick between 0-4 and spent a lot of time in hospitals and people wonder why im not keen on hospitals or food! I have also had one cardiac catheter when i was younger. Although i had the repair im still likely to need more open heart surgery in the future and will need on going cardiology support.
Then as you know unless your new to my blog i gained rheumatoid at the age of 23 years old.
So since i was young ive known doctors and nurses infact they are part of my life. I mean ive been in hospitals all my life ive been poked and proded by professors, my consultants, by GPs even student doctors its part of life. I had test's done all my life, bloods, E.C.Gs are normal to me and Echocardiograms are just the norm and not forgetting the chest xrays always a joy!
So as you can see its always been the same 0-23 i was use to this constant doctor help and constant doctors involvment in my life. But when i turned 23 it was like OMG i see a lot of doctors because now i have 2 consultants, technically i should have 3 as my hearing isn't great either! I have 3 medical nurses GUCH (grown up congenital heart nurse), Rheumatoid Nurse and lets not forget my Asthma nurse! Then you have to look at the Occupational theropist, the Physiotheropist, the Dietician and even a councilor to help me deal with loosing my mum.
So you see you may not be able to see my invisible health problems and when you do know about them you dont realise the full back room staff thats behind me, helping me stay "vicky" shocking really just how many people are involved. I am so thankful for my team and the work/help/care/compassion they show to me every single day and visit. Also to my old team at the Childrens hospital both Cardiology, Audiology and at the QE in Birmingham Cardiology and my old rheumatology at worcester.
But essentially there are so many other people involved who keep me going ... just so many people to mention they are all fantastic people carer's, general hospital staff, receptionist, pharamcy, support workers, social worker and of course family and friends!
So i may be one person but i have many many people behind me who keep me together and make me smile.
Im use to doctors but if i hadnt been it would have been a shock at 23 to be introduced to the world of medical help i dont think i would have handled sitting in hospitals waiting or the constant appointments.
Wednesday, 18 January 2012
Rheumatoid pain
Recently i have read two blog entries by two people who i chat to on twitter who suffer from RA and JRA and they both looked at "pain" i thought i'd cover it to but first links to there blogs:
http://rheumatoid20something.blogspot.com/2012/01/so-whats-pain-of-rheumatoid-arthritis.html on twitter @josephbayliss
http://charlottesrajourney.blogspot.com/2012/01/clock-watching-truth-about-pain.html @charlotte_stace
So unlike my friends i never had JRA it came on after i lost my mother i was 23 years old. Before this i had a heart condition but i'd never been one for painkillers or generally moaning about joints hurting. I took life as most of us do, i wore high heels, i didnt think about what i was wearing there was no need to. I walked, occationally ran, enjoyed sports such as horse riding.
But then i turned 23 and my life changed forever because it is simply not just the physical pain its the mental pain you go through as well. Which many of you will never truly understand even after reading mine and others blog's simply because no one can truly understand unless you suffer to.
Many of my friends see me smiling and my happy comments on facebook and often twitter to but have you ever thought that behind that smile that "cheery vicky" there is a person crying? Do you realise the pain i feel every day. Because in truth i have a "yeah im good" face for everyone but the truth is only seen by very few such as my doctor my Rheumatoid friends both facebook and twitter but in truth not even they no the full extent of my pain.
I got asked once why dont you show your pain to everyone .. well ask yourself this would you like to show the tears rolling down your face at the thought of getting out of bed because of the pain in your feet, or crying because your awake again at 3am or the tears because you can not get comfortable because of the pain in your joints? No i dout you would. I feel weak admitting i am in pain, i hate taking pain killers i feel weak but i do because they get me through the tough hours.
See what many of you dont see my carer's do, the people who help me get through, they put a smile on my face, make me feel normal while they are here, they have become friends as they are simply part of my life, they have seen those tears, the fear but also the happiness when some thing happy happens, when i took that step .. when i come home from reiki and can get dressed myself.
You dont realise the pain of every day, mentally the pain of admitting you need help to get out of bed, to unplug your charger, to pour a drink .. to lift your laptop, sometimes even the remote. The shame of not being able to do your own housework having to reply on others family carer's (friends) its truely heartbreaking i am only 26. The fact of not being able to wash your hair yourself because of your disfigured hands, needing someone to help you put your socks on because you simply can not do it. Not being able to cook your own food, or even cut it up, have you ever been so embrassed you'd rather not eat instead of asking someone to cut your food up? No i didnt think so it hurts you feel so low.
People think i do alot because i go to concerts and i am going to the olympic games in the summer. But do you realise what my days really consist of .. well i'll tell you simple sitting in my house looking at the 4 walls not being to watch the TV any more because ive seen it before not being able to enjoy my music because its all i have on because the TV is now boring. I sit here looking at the four walls and if i am not doing that i am looking at the doctors/hospitals four walls .. ever felt that it is the worse feeling in the world. Have you ever gone through a day were you only see your farther and your 2 carer's in the morning and evening ive had that happen to me, some days i may see more people if i have appointments. I have no friends who live close by you see so i get really lonely. Thats why im on the net "your always on line" people say to me yeah because its communication with the outside world. I look out my window and think i wish i could go out there just walk out there breath the air, run through the rain, smell the spring flowers, but i can not that is reality.
Do you realise the pain of only being able to wear trainers all other shoes hurt or are just painful to even get on. Or the pain of looking at your clothes and crying cuz you know you wont get that on, looking in shops loving that top but knowing there's no point wasting money because you wont be able to get it over your hands or over your knee .. think next time you get those skinny jeans on i couldnt get them on i have to wear "big" jeans so they go over my knee.
As for the physical pain, i simply can only say it is constant pain move a joint and OUCH sometimes the pain is that bad i feel sick with it. It feels like a burning sensation, it feels like im being stabed over and over again it feels like ive broken a bone every time i push my joint so far the constant pain without those painkillers i'd probably be crying a lot more than i do.
So Rheumatoid you create a lot of pain but you have NOT beaten me i'll continue to have my life and enjoy my days with family and friends but i know you'll be there ready. Even the fun days you hurt me .. thats life could you live with it? Next time you think oh vicky does loads think about this post and realise i live for the fun days and dread the normal days.
Thank you everyone for reading as always
much love xx
http://rheumatoid20something.blogspot.com/2012/01/so-whats-pain-of-rheumatoid-arthritis.html on twitter @josephbayliss
http://charlottesrajourney.blogspot.com/2012/01/clock-watching-truth-about-pain.html @charlotte_stace
So unlike my friends i never had JRA it came on after i lost my mother i was 23 years old. Before this i had a heart condition but i'd never been one for painkillers or generally moaning about joints hurting. I took life as most of us do, i wore high heels, i didnt think about what i was wearing there was no need to. I walked, occationally ran, enjoyed sports such as horse riding.
But then i turned 23 and my life changed forever because it is simply not just the physical pain its the mental pain you go through as well. Which many of you will never truly understand even after reading mine and others blog's simply because no one can truly understand unless you suffer to.
Many of my friends see me smiling and my happy comments on facebook and often twitter to but have you ever thought that behind that smile that "cheery vicky" there is a person crying? Do you realise the pain i feel every day. Because in truth i have a "yeah im good" face for everyone but the truth is only seen by very few such as my doctor my Rheumatoid friends both facebook and twitter but in truth not even they no the full extent of my pain.
I got asked once why dont you show your pain to everyone .. well ask yourself this would you like to show the tears rolling down your face at the thought of getting out of bed because of the pain in your feet, or crying because your awake again at 3am or the tears because you can not get comfortable because of the pain in your joints? No i dout you would. I feel weak admitting i am in pain, i hate taking pain killers i feel weak but i do because they get me through the tough hours.
See what many of you dont see my carer's do, the people who help me get through, they put a smile on my face, make me feel normal while they are here, they have become friends as they are simply part of my life, they have seen those tears, the fear but also the happiness when some thing happy happens, when i took that step .. when i come home from reiki and can get dressed myself.
You dont realise the pain of every day, mentally the pain of admitting you need help to get out of bed, to unplug your charger, to pour a drink .. to lift your laptop, sometimes even the remote. The shame of not being able to do your own housework having to reply on others family carer's (friends) its truely heartbreaking i am only 26. The fact of not being able to wash your hair yourself because of your disfigured hands, needing someone to help you put your socks on because you simply can not do it. Not being able to cook your own food, or even cut it up, have you ever been so embrassed you'd rather not eat instead of asking someone to cut your food up? No i didnt think so it hurts you feel so low.
People think i do alot because i go to concerts and i am going to the olympic games in the summer. But do you realise what my days really consist of .. well i'll tell you simple sitting in my house looking at the 4 walls not being to watch the TV any more because ive seen it before not being able to enjoy my music because its all i have on because the TV is now boring. I sit here looking at the four walls and if i am not doing that i am looking at the doctors/hospitals four walls .. ever felt that it is the worse feeling in the world. Have you ever gone through a day were you only see your farther and your 2 carer's in the morning and evening ive had that happen to me, some days i may see more people if i have appointments. I have no friends who live close by you see so i get really lonely. Thats why im on the net "your always on line" people say to me yeah because its communication with the outside world. I look out my window and think i wish i could go out there just walk out there breath the air, run through the rain, smell the spring flowers, but i can not that is reality.
Do you realise the pain of only being able to wear trainers all other shoes hurt or are just painful to even get on. Or the pain of looking at your clothes and crying cuz you know you wont get that on, looking in shops loving that top but knowing there's no point wasting money because you wont be able to get it over your hands or over your knee .. think next time you get those skinny jeans on i couldnt get them on i have to wear "big" jeans so they go over my knee.
As for the physical pain, i simply can only say it is constant pain move a joint and OUCH sometimes the pain is that bad i feel sick with it. It feels like a burning sensation, it feels like im being stabed over and over again it feels like ive broken a bone every time i push my joint so far the constant pain without those painkillers i'd probably be crying a lot more than i do.
So Rheumatoid you create a lot of pain but you have NOT beaten me i'll continue to have my life and enjoy my days with family and friends but i know you'll be there ready. Even the fun days you hurt me .. thats life could you live with it? Next time you think oh vicky does loads think about this post and realise i live for the fun days and dread the normal days.
Thank you everyone for reading as always
much love xx
Has my blog worked
So for the past 4 months i have been writting this blog and i am sure you will remember me saying that it was my biggest achievement last year. I feel that it has raised awarness for my own family, my own friends, my lovely tweet family and of course the many hundreads of people who read this across the world who i have never spoken to or come into contact with. I thank you all.
This blog has really helped people understand this condition across the world, you guys rocks. Keep spreading the word of the blog and if you ever have chance let people know "rheumatoid arthritis isn't arthritis"
I start new physio on Monday and a week later i meet my new consultant which i am looking forward to meeting and hopful we will maybe get my condition under better control.
For now though i will just keep going the best i can. I have called a meeting next week were my condition will be discussed with many people and hopefully this will only help my cause.
Thank You Everyone for reading and keeping up with my blog .. lots of posts coming your way soon :D
This blog has really helped people understand this condition across the world, you guys rocks. Keep spreading the word of the blog and if you ever have chance let people know "rheumatoid arthritis isn't arthritis"
I start new physio on Monday and a week later i meet my new consultant which i am looking forward to meeting and hopful we will maybe get my condition under better control.
For now though i will just keep going the best i can. I have called a meeting next week were my condition will be discussed with many people and hopefully this will only help my cause.
Thank You Everyone for reading and keeping up with my blog .. lots of posts coming your way soon :D
Monday, 16 January 2012
Mobile Phones
So every 18 months it comes to the point that my contract ends and its time to get a new mobile. You see the thing is to most its just whats the best fashion? For me and i expect many other rheumatoid suffers its about what can we actually use. My mobile is like a life it allows me to keep in contact with my friends and family through both text's, phone calls, social networks. If i have a bad day and can not use my laptop then i always have my mobile.
See a few years ago when we didnt have touch phones i certainly wouldn't have a mobile because i wouldn't be able to use it. However now we have touch phones which have allowed me and other suffers to have mobiles again.
So to the person who invented touch phones lets hear a hurray for them!!
So Touch phones are essential and also the size of the phone is some thing to consider.
See a few years ago when we didnt have touch phones i certainly wouldn't have a mobile because i wouldn't be able to use it. However now we have touch phones which have allowed me and other suffers to have mobiles again.
So to the person who invented touch phones lets hear a hurray for them!!
So Touch phones are essential and also the size of the phone is some thing to consider.
Friday, 13 January 2012
Fatigue
So its ironic now i have so much on my plate after Christmas has gone. I have appointments coming in thick and fast every single day! I get to meet my new rheumatologist in 2 weeks. I have university work to do, i have other things to get done and take part in. I now hit fatigue. In the last 24 hours ive slept 16 hours and yet i am still tired. I suspect i'll go to bed shortly because i'm that tired!
I'm ok other than the fatigue, ive put another 1lb on thats great news. I have managed to take some steps unaided, i have to build it up slowly its all about baby steps. I had a phone call to say my physio is starting again in 2 weeks, i have also got my multi-agency meeting occuring a week on wednesday. So i have all that coming up to.
I have tickets to go and see Olly Murs in February then im off to Disney on Ice in march and then JLS!
Feeling quite isolated as i am sleeping so much i think it will get better though once im over this patch, fatigue is the worse because you just have no energy, eating using a lot of energy as does just getting out of bed. I know it will get better thought just got to fight myway through.
2012 is going to be a long and busy year but thats exciting its better than sitting around doing nothing.
I have my fencing finally re-starting which i am excited about! Plus my photography group and even a book club to add to my busy schedual but new friends, new year, new fun, new path!
Happy new Year everyone :)
I'm ok other than the fatigue, ive put another 1lb on thats great news. I have managed to take some steps unaided, i have to build it up slowly its all about baby steps. I had a phone call to say my physio is starting again in 2 weeks, i have also got my multi-agency meeting occuring a week on wednesday. So i have all that coming up to.
I have tickets to go and see Olly Murs in February then im off to Disney on Ice in march and then JLS!
Feeling quite isolated as i am sleeping so much i think it will get better though once im over this patch, fatigue is the worse because you just have no energy, eating using a lot of energy as does just getting out of bed. I know it will get better thought just got to fight myway through.
2012 is going to be a long and busy year but thats exciting its better than sitting around doing nothing.
I have my fencing finally re-starting which i am excited about! Plus my photography group and even a book club to add to my busy schedual but new friends, new year, new fun, new path!
Happy new Year everyone :)
Friday, 6 January 2012
school
I know your thinking what a strange post to have you left school 11 years ago this summer. But school shaped me in many ways and i guess this i what i want to say.
I went through school from the age of 5 to 16. I had my health issues with the fact i could not hear very well and my heart which meant i was ill a lot and often wasnt at school for a full week, infact i can not remember a whole week i was there for.
It was hard for me because i went through school with no real friends that stood by me through thick and thin from 1 school to another. I felt as if i was alone all the time. Dont get me i had some friends but life long friends nope. Some times i wonder what i did wrong in school, i mean i was friendly, i guess its cuz i was always studying working hard, i wanted my education so much it was my focus is that were i went wrong?
I longed to belong to a "group" of friends .. but it never happened so i just got through on my own, i studied hard and just did what i needed to do to get through. I remember that sinking feeling when everyone was getting there results in there groups of friends congratulating each other and me i said hi to a few people in passing but i was on my own from the start to the last day.
I wanted to go back to 6th form after my health meant i couldn't pursue my true love of catering, i just could not cope it was making me feel ill. So i went back to enrol i lasted a few weeks, because i had no one at school i wasnt excepted into people's groups that were there many for 3 years and longer. So as quick as i started i left again.
I ended up taking time out then because i didnt no what to do with my life. I ended up completing my A Levels at Bournville i had a good experience i made some friends who i am still friends with now and i never felt out of place because they liked me for being me.
Why it never happened at school i really dont no.
Reason for this .. been talking about why i find it hard to make new friends well this is why and with my rheumatoid its made harder.
I didnt mean to upset/offend anyone just saying how it felt for me.
I went through school from the age of 5 to 16. I had my health issues with the fact i could not hear very well and my heart which meant i was ill a lot and often wasnt at school for a full week, infact i can not remember a whole week i was there for.
It was hard for me because i went through school with no real friends that stood by me through thick and thin from 1 school to another. I felt as if i was alone all the time. Dont get me i had some friends but life long friends nope. Some times i wonder what i did wrong in school, i mean i was friendly, i guess its cuz i was always studying working hard, i wanted my education so much it was my focus is that were i went wrong?
I longed to belong to a "group" of friends .. but it never happened so i just got through on my own, i studied hard and just did what i needed to do to get through. I remember that sinking feeling when everyone was getting there results in there groups of friends congratulating each other and me i said hi to a few people in passing but i was on my own from the start to the last day.
I wanted to go back to 6th form after my health meant i couldn't pursue my true love of catering, i just could not cope it was making me feel ill. So i went back to enrol i lasted a few weeks, because i had no one at school i wasnt excepted into people's groups that were there many for 3 years and longer. So as quick as i started i left again.
I ended up taking time out then because i didnt no what to do with my life. I ended up completing my A Levels at Bournville i had a good experience i made some friends who i am still friends with now and i never felt out of place because they liked me for being me.
Why it never happened at school i really dont no.
Reason for this .. been talking about why i find it hard to make new friends well this is why and with my rheumatoid its made harder.
I didnt mean to upset/offend anyone just saying how it felt for me.
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