Tuesday, 24 January 2012

My aunty and uncle

I have often refered to them as my second parents because growing up they was always there for me. I didn't know my mum was very sick when i was growing up but i know now that they would have been there for me if she would have died sooner than she did.

Because when my mum was rushed into hospital there was only one person my mum and dad would call my aunty and uncle and they came and i went to the house for my brother because my mum trusted them with her children. I remember asking my aunty on facebook "is my mum going to die" i knew the answer already deep down i knew some thing wasnt right.

But only my aunty and uncle could come and tell me in the kindest and loving way they did, just they had the words to tell me it was horrible to hear but i trusted them that i would be ok. They supported me through that time by pursuading me to see my mum and i thank you for that time and time again because if it wasnt for you i may not have gone and seen my mum which i would have regreted. You took chrage of the funeral arrangements when me and dad could just not have done those things we didnt have the strength you showed, the love and compassion you showed. Of course it didnt end there you helped my mum with the planning to and on top of all of that you stood in the church and spoke for the family which is more i could have done, you were so brave and i really looked up to you and was thankful you could do that for our family, your inner strength that day will always stay in my heart.

But beyond that you took me to university with i think everything but the kitchen sink! You have been happy for me when ive achieved things from school to now. You've taken me places and helped me figure out how to get places. You've given me advise and shown me love and kindness through out my life, you'd take me places with you and your own children. You've come to hospital appointments me. You have in some ways gone beyond an aunty and uncle. I know i can always talk to you that you're there at the end of the phone.

To my other Aunties and Uncles you are all VERY special to me and i love you all and im thankful for the support you have shown me over the years.

When i was young my granddad always told me family was important. I have the best family a girl could wish for xx

My Cousin

Many of us aren't particularly close to our cousins we see them as we grow up to talk to and play games with as i have with other cousins. But i have one cousin who is very special to me, why because we brought up more like sisters than cousins. We spent many hours together, i felt more like a sister than a cousin to her. She understands me without having to say anything. She was there for me through some dark days and some fun days, we have laughed and cried together, even to this day she supports me. Tomorrow i have a meeting with my support team and she's coming a long to support me and i dont know many cousins that would.

She held me tight the day of my mums funeral, she helped me get through that day with a smile and a nod of encouragement. She helped me choose the flower to wear, the music we chose together, we laughed at the memories and the music we choose afterwards. She made me feel like i was safe and it was ok to cry. She reassured me that things would be ok.

When my mum was in the hospice she was there for me, we had lunch together, she showed me round, she held my hand when i first went in because i was so scared. She just knew the right words.

She was there for me when i got my exams results, when southampton happened, when i left for university she made me cry with her kind words on a letter she wrote for me.

My cousin makes me laugh, shes there for me to talk to and for me to occastionally cry on her shoulder, she even does my reiki.

I count you as a sister more than a cousin because you have been there from day 1 the laugher and the sadness you never let me down or make me feel im going on to much. You're the best cousin a girl could wish you.

I love you with all my heart and i hope you know how much you've helped me over the years, life has been tough for me at times but you always make me smile.

All my other cousins i love you all and you have a special place in my heart.

Claire, Liv and Katy

So this post is to three very special friends..

Claire we have been friends for 4 years now and what fun we have had! U was my friend at the start of this journey when you saw it starting to the point it is today and you have stood by me through it all. You have come to concerts you have stayed in hotels incase i needed help and even helped me get dressed to go out. You have talked to me when i've felt so low i didn't know what to do any more. You really have stuck by me and for that i am forever greatful, you even take me shopping and we do love shopping and it puts a smile on my face you just treat me like vicky not vicky+rheumatoid.i love you as a friend and would be lost know im always here for you. xxxx

Katy we have been friends a long time! From Bournville studying Law .. you saw me full of energy walking about haha never a dull moment, always away at the weekend my suitcase in law every friday! Then you've seen the heart break in southampton, the pain of loosing my mum, the rheumatoid and everything in between, its been a rocky road and you have always stayed by myside and said "your still the same vicky to me" You even wrapped my christmas gifts up for me, your a true friend, even when i couldnt eat we'd joke about eating then babies food! You got me to eat in a public place for the first time, you didnt watch me but you did encourage me. For that and everything else you have done for me i will be greatful forever you are an amazing person, i love you as a friend and would be lost know im always here for you. xxx

Oh livvy we have had some good times we have known each other a very long time now and you have not once gone oh shit even when i've took your dummy off you! Attempted to take me through a shop window even stalling on a major roundabout! You have still been there we have had some fun over the years, you have always said do what makes you happy, you are a good friend and i'll always be greatful. You have even helped me get dressed, washed my hairm, brushed my hair cooked my food so much for me. Its been a rocky road but u've stuck by me. i love you as a friend and would be lost know im always here for you. xx

Wow and who can forget Sarah a friend for life i love you mate and of course sam for just knowing what to say. I love the bones of you to, we should do more together. xxxx

facebook friends

What can i say?

WOW my facebook rheumatoid community you are AMAZING i love every single one of you, infact i look up to many of you, the compassion the friendship the love you have shown me is amazing. You have shown me how to keep going when things have got really tough you made me get my ass in gear to get my self going instead of crying my heart out you made me believe i could carry on. THANK YOU

To my none rheumatoid friends thank you for everything for your kinda words, your support your love, your attempts to understand by reading this blog i really do love you lot. I know its been hard for many of you to see me go through this and you will not understand how much it has meant for you to stand by me not just through the rheumatoid but everything else ive known many of you a long time and you have been on this journey with me.

So its a big thank you from me :)

Twitter friends

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.


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.

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

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

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.

Friday, 13 January 2012


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 :)

Friday, 6 January 2012


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.