Centre Parc's

Well i didnt write about my trip away with my family so i thought i'd do it now! So we booked our trip in May and it felt like forever til the day came to leave i was so excited about my trip! We took three cars! Me and my cousin in mine and we did some bunny hopping down the road ... it was so funny!! My aunty and Uncle and the girls in the second car and finally matt in the third car! We took a de-tour on the way to a shopping outlet i mean it would be rude not to! We started the trip off with hot chocolates for us all and a bit of shopping and a few treats for my self! When we arrived me and my cousin were very excited at the fake snow at the entrance! But then we saw Santa at check in and we were even more excited the girls were not as pleased! We eventually found our lodge after some driving and a bit of a hill walk with the bags! The lodge was fantastic we was all impressed! After unpacking we were off bowling and every one had a great time i think my uncle won closely followed by the oldest girl! We had none alcoholic cocktails with the girls which was great! Finished off with a take away for all and an early night! Saturday morning Matt joined us. We was up bright and early well for me it was! We went to see the reindeers they were so lovely! Then we waited for the pony ride ... but after about 5-6 minutes of waiting i looked at the sign and it said "pony ride from santa" OMG we were in the wrong place and late! My cousin asked a guy and he told us were to go and made sure we didnt miss the pony ride! Did we run, it was quite funny! The pony ride was lovely and i think she enjoyed it! We then qued to see Santa himself .. it was all going great, lovely workshop had a chat with a couple of elfs! Then the big man was ready for two little girls! LOL lets say the sisters are united in anti-santa! A few tears and screams, but santa read our letters out and wished us all a merry christmas so that was nice oh and the girls got a gift a reindeer and an elf and they loved them! That night we talked watched TV as a family and ate some yummy food! Sunday we got up early again! This time my Aunty and Uncle went off shopping while me carolyn, matt and the girls went off to pain baulbals! I have to say i enjoyed watching the girls paint them while the youngest painted her self a fetching shade of purple! We then left them to be fired we had to pick them up tomorrow! We then went for a walk around the lake and found the country club so we could all have some yumy food and it was very good i enjoyed the turkey! Later we walked back and went to soft play :) and the eldest got to make her self a teddy bear she called it sparkles and dressed it in bridal wear! I had a little nap before we went back out to watch the fireworks which were fantastic although the youngest was a bit scared! Monday we came home after feeding the ducks and picking up the baulbals that im told are now on the tree at my cousins We had a fantastic time, new memories and a great family break oh and how could i forget the brillant log fires!! I love my family so much thanks for a great weekend xx

2012 Year review!!!!

Its been a crazy old year with lots of highs and lows both personally and medically. Many people have come and gone some i’ve become much closer to this year so here it goes!! So i thought id start with my long suffering medical team just want to say a massive thanks to you all its been a crazy old year and 2013 is set to be another testing year for us all, if i do say so myself! This year i saw my cardiology team for the first time in 2 years it was good to see them and even better to know the old ticker is going strong! My friends what can i say this year you’ve been there for me through the good and bad its been fun!! My beautiful family thank you for everything i wouldn’t have got through this year with out you all. So i just want to make some special shout outs to 3 people who don’t know how much they helped me in late 2011 and early 2012 without you three i doubt id be were i am today, Jo thank you for the confidence building, the chats, the hugs the love when it was needed you are amazing you rock!! Lesley for being so nice every day even if i was scowling “Vicky stare” lol you just had the right words. Hazel for our long chats at night and the advice on the living room!!! You three saw me through a hard time with ra but always had a hug and love when needed. Tracey and Carolyn what can i say? You two have give me a kick a hug and laughed and cried together. Tracey you put up with my grumpy moods lol my happy moods and just let it go with a smile occasionally a kick too!! We have had some fun this year thanks for making 2012 awesome! To some special friends, i don’t really know were to start so many. Katy thank you for being there through the hard times and the fun times, V fest 2012! I know its been a tough year for you too and lets hope 2013 is a better year and bring on Majorca!!! Sam when the going got tough you stood by me i wont forget that. Amber omg i love you girl you have become a rock we talk about everything and anything infact nowt we don’t talk about, lets kick Ra’s butt in 2013! Mary i just can not thank you enough for standing by me so much this year there may be an ocean between us but girl you’ve been there for me like you were in the next town! Of course there have been many others Jo for our long Skype chat and always being there to listen, Maree for being there to talk to all my other rheumatoid friends and other friends! The lads, what can i say you boys keep me on my toes haha! Mike we have some random chats and we love our sweets, you give me solid advice about my medication, your a great guy and an awesome friend. James we may be ex’s but you have been there this year making sure im doing ok and when it got tough you were asking if i was ok meant a lot. Mark, what can i say about mark? You have been a tower of strength and love and gave such amazing advice these past few months. You get the pain and fatigue and always ask if i’m ok and have listened to me yap on about everything and anything! Thank you for everything love you mate. Duncan oh i couldn’t not mention you, its been a mad 6 months! We have talked about everything and anything there isn’t anything we aint talked about no hairs and graces as they say! You supported me through some difficult times and i hope ive been there for you too. Thank you for everything, always here for you no matter what, Love ya mate So now the thanks are over lets start on the year as it happened!! January came i was feeling pretty low as i wasn’t sure what would happen this year i am so lucky to have some amazing people around at that time. I started seeing a new rheumatologist in January and it was fantastic i though he was brilliant and i could work with him would this lead to me being able to trust enough to start medication, time would tell!! February came with snow and a bit of madness oh and of course Mr Olly Murs and the o2 in London what an amazing night with my friend Claire we had an absolute blast and the trip home was fun too, now about landing on our backs on that bus!! My RA flared really badly in February and had me take a few weeks out but hey seeing olly was defiantly worth it!! Then we lead on to march were my RA was feeling a bit better but i knew it was going to have to be handled with care because i had a busy month! First off Disney on ice with my cousin and her little one we had a brilliant day and i loved spending time with them both thanks for a great time! Then me and my cousin got on our jollys to Manchester to see JLS of course!! Haha oh what a night! We sang and danced together, we went back to the bar and JLS were only their, we had a great night few drinks and then off shopping and back home again. April was a quite month for me i rested as i knew i had a crazy few months coming up! Then we come to May, what can i say about may changes were made! First a lovely picini with tracey, my cousin and the girls and family friends! We had lots of fun watching the ducks and on the playground! Then we went off to London to watch X-factor we had a blast me, tracey and Claire! Was a lovely day had by all except the “DAM CYCLIST!” In Traceys words!! With the Uk griped by Olympic fever how could i not mention it, it was amazing watching it on the TV and brought the whole country together as one. I really enjoyed going to the Olympic games with Claire and my brother it was great to experience it with them both a special moment in history no one will forget. I was pleased i could share it with my younger brother. August well i couldn’t go to one of my Olympic events as my RA was flareing badly so i had to make do with the TV coverage which was excellent but not the same as being there! But i did manage to get to V festival with Katy we had an absolute blast! Singing and eyeing up the lads! I mean isn’t that what you are meant to do at a festival!! September WOW that was a crazy month some good and some bad for my health anyway. Firstly my cousin got married and it was a wounderful day had by all. Then i was meant to go to the paraolympics but my system just couldn’t manage it so i had to miss out but it was for the best as i had other things planned. Then I went on holiday to Tenerife and it was FANTASTIC the heat the food i felt amazing no pain i took no painkillers the whole time i felt fantastic, i didn’t want to come home! Then after coming home i had a trip to see my cardiologist who was disappointed to know i hadn’t started any medication but we had a good long chat about it and i decided to give it ago after my holiday! I then went on a long weekend with my family to Weymouth and we had a great time, sea, sand and sun one day! We danced in the evening and made friends with rory the tiger! My cousin costume making even won first prize for her little girl, well done cousin! Then the time i was dreading came. At the end of September 2012 i made the choice with the support from my loving family, wounderful friends and my doctors to start on medication Methrotrex and i have to be honest i wish i hadn’t i was so ill! I did not feel good at all and i was taken off it and it was deemed to be a fail by my doctors! Got to give a big shout out to Tracey here for putting up with me! For my cousin for making me laugh and to my friends for being there when i thought i was going to die i felt so bad! Thanks for pulling me through that! October was a quite old month for me, myself and my cousin went to see Cheryl in concert which was fantastic but in truth i needed a month to recover from September alone! November well it was going to be a quite month but then Robbie Williams announced a three night tour and i had to go so off we went to London, it was fantastic, im sure Tracey will say except the public transport lol! December i went to centre parcs with my family we had a fantastic time and it was brilliant to spend time with my family and make some lovely memories, seeing the reindeer, meeting santa, the fireworks and even the walk along the lake to get to the pub on the Sunday! Even bunny hopping it down the road thanks to my cousins driving, why isn't fuel coming out? haha Love ya carolyn! All in all 2012 had been a good year it has been painful, its made me a better person its been hard at times but its shown me what great people i have around me and i haven’t even mentioned the flood in my property or some amazing individuals such as Sarah and Marica. My doctors in 2012 out did them selfs and made sure i got through with a smile on my face and taught me that my strength can get me through the tough times. 2012 had taught me one thing and it should all other suffer’s don’t let RA stop you spending time with family or friends or doing the things you love because those days and events are what keep you going through the rough days and months. Next year i start biological treatment and have more memories to make with family and friends here’s to a good 2013 to all my friends and family as well as my blog readers. Love you all Vicky xx

Rheumatoid in 2012

The last 12 months have been really tough with my Rheumatoid its been a very painful year and one that has set me on a new journey with medication one that i doubt i would have taken but ill explain that shortly. This year i have needed more painkillers than ever before! Due to the rheumatoid getting much worse. Ive got a new team in 2012 at city hospital in Birmingham and to be fair they are a great team and i think they are ace i wish i'd meet them sooner maybe things would be different but i have to look forward and not backwards. The BIGGEST thing this year with my rheumatoid was the medication Methrotrex and although it didn't work i am so proud of myself for trying it and getting through that week with my friends and family it was a rough week but i did it i got through it guess i am stronger than i thought i was. But you know the truth is that if i hadn't meet my friend Duncan i would never have tried the medication but i did it and i am glad that i did even thought it means biologic's next. So really RA is worse than it was twelve months a go but it wont stop me enjoying myself and i am very lucky to have great support from my friends and family. VB!!!

Biological Treatment

So as you are aware i failed methrotrex as my body just didn't take the the treatment and to be honest i am gutted as it has led me to the hardest choice of my life and that is to start biological treatment. Why i guess your thinking there are many reasons .. first being that its an injection and i have a fear of needles and its a huge step to have an injection every day and then blood tests every 6 months too. Secondly because i have to go into hospital once a week to have the injection at first but they hope that i can eventually come home and have the injection which will be stored in my fridge but it is very scary that its a big medication with risks. Thirdly because of the amount of risks involved.I have a heart problem which doesn't help the problems and then on top of that they ask you loads of questions about family history and i said yes to the majority of it in relations to cancer etc. Im scared in case my heart does not cope and it causes heart failour and or cardiac arrest its part of the risk for anyone but with a heart condition its more risky but that's why i have to go into hospital so medical help is on hand i guess we will have to see what the future holds on the 7th January 2013.

A friend gone to soon

A while back now on facebook i was a member of many many groups and over that time i meet some fantastic people with rheumatoid whom have helped me to cope with many obstacles, taught me how to laugh with the pain. But then one night a small minority of us broke away, thanks to our friend Mani the teapotters were born! We as a group have been through a lot together, we support each other, we laugh together we are just like one big family. Today however one of our own Tina died of Cancer, she suffered with several health issues but if you needed advise she was there, if you needed a laugh she was there, if you needed a drool over jonny deep she was there by your side. Even in the latter part of her illness she was still with us thinking of us and part of our family. Tina may you fly high to heaven and be in no more pain. We will miss you so very much but we will remember you how i think you would like to be, a true fighter, a warrior a friend to us all regardless of location you were there by our sides. But mostly for your laughter and your naughty side! R.I.P Tina we miss and love you dear friend xx

Cheryl Cole and the aftermarth

So on Friday i went to see Cheryl Cole at the LG arena, Must admit the disabled facilities were good, pleasantly surprised! Cheryl was really good as was Tinchy Styder i enjoyed it a lot! Although getting to the LG was a bit of fun i mean how do you get lost in your own city? Well me and my cousin did .. yes i know, we laughed to! Well then there was the parking fun .. now that was hilarious!! But after all we had a top night and had a drink which is always nice!! I had the best night sleep on friday not sure if it was i was knackered or the fact of alcohol .. (if my doctors are reading this i need to let my hair down haha!!) Saturday was a total was out i slept basically all day bar moving from the bed to the sofa!! Then on sunday i was still suffering was a bit gutted as was meant to be catching up with an old school friend but just wasn't up to it and slept most of sunday as well. Thats the thing with ra people dont realise you have to enjoy the good bits but then suffer the bad bits after!! xx

Manchester 10k run for NRAS!

Ok so im guessing you're thinking whats this post about ... well here goes .. My friend and i had a conversation one night and we talked about doing a marathon for national rheumatoid arthritis society and he went to sleep and i think he forgot!! I reminded him though!! In the end Duncan though it would be a bit much a marathon .. im working on him for next year thought!! We decided he would do the 10k Manchester run on the 26th May 2013 .. now he's a manchester united fan and we might reach the champions league final the day before so its going to be hard work this run!! Duncan asked me who i wanted him to run for and i said "NRAS" i mean who better? and he very kindly agree'd so im asking all my Blog friends if you can get behind my friend who's running this race for 3 reason, Himself me and my charity and its a great charity If you'd like to sponsor him then please follow the link below :) http://www.justgiving.com/Dunc-Smith1 (copy and paste in to your brower!) A big thanks in advance, From my self the suffer Duncan, the runner and the one who's helped me through tough times NRAS for supporting the charity :)

Rheumatoid didnt beat me but it gave a good go!

Soo the next few months, i intend on relaxing a lot so i can enjoy my christmas with my family as i love spending time with them. I am off to see Cheryl cole next week my last concert of 2012 and i am quite excited! Then im off on my last holiday this year with my family at christmas we are off to see Santa! I see my consultant next week were i will find out whats coming next in terms of health, what treatment next, what my body will tolerate i dont know. Am i scared i sure am because its a step into the unknown but i am very lucky to have a fantastic group of friends and family around me who i know will be there for me through thick and thin no matter what happens. Im back to see my cardiologist in December to make sure my hearts playing OK depending on treatment choices but hopefully i have many years ahead before the dreaded Open heart surgery becomes reality but i know deep down that when it comes i'll be ok because i have friends and family who will be there to tell me its going to be. I know i need to rest and realax this next few months so my body can recharge and prepare for my next battle and also get back to were it was pre-summer. Its not easy having Rheumatoid but you can not let it win and believe me at times ive wanted to let it win because it hurt so much and the pain got to much but i got through because of my family and my friends they are always by my side. xxx

Male Friendship

Many times i have thanked so many of my females friends and i love you guys loads but this post is about a male friend who has helped me through some difficult stuff. I dont know if he'll read it but if you do this is for you... Were do i start about my friend, he's been supportive, he's talked sense he's even talked reason. But beyond that he's challenged me and it was good because everyone needs some one to have challenging conversations with. He's seen the many sides to me, the vunerable (flood), the excitable, the happy, the sad and the intelligent side a side that i dont show people often. This summer he's been by my side through some really difficult times and the fun times to encouraging me to do things like write articles for a Manchester United Fan Site which i wouldn't have dreamt of doing with out his encouragement. He gave me the fight to stand up to people when my property was flooded and i was pretty mad at people lol! He's just stood by me and helped me choose to take my new medication and he was there to tell me it was going to be OK and for that i will be thankful as if i hadnt tried it i wouldnt have known the outcome and the treatment wouldn't be moving forward. He is a friend who will even run the Manchester 10K race for my charity NRAS how many friends would do that for you? Thank you for being there this summer and know im there for you always Teamwork!!!

My manic summer

So you've read all my updates and im sure your thinking my god that was an exciting summer! Yes it was fantastic i spent time with my family and some close friends and i really enjoyed it because ultimately you still have to enjoy life when you are living with a life long condition. The truth about my summer, it hurt a lot, i cried, i slept so much i've missed my summer bar when i was busy. I have had that many flare up's with many joints from my shoulders to my feet. It has certainly taken its toll on me ive been exhausted at some points. Ive taken more pain relief this summer than in any other summer too! I didn't even tell you about the flood at the start of the summer .. some thing that still hasnt been fully resolved and we are now in October!! Would i change my summer no way because i needed to have some fun and enjoy myself with people around me who know vicky as vicky and not "ra and vicky" No pain no gain certainly applied to me this summer!!

Wedding bells .. My cousin

During all my excitement i went to my cousins wedding. I got a nice new dress but didnt think about a coat so i had to use a big winter white coat .. well it was different right? lol Got my hair all done nice and off i went! It was a beautiful service and every one enjoyed them self in the evening. I had a wonderful day and got a bit drunk i remb saying "the tents spinning" i meant marquee and it was as far as i was concerned and its not often i get drunk with my family!! Unfortunately my joints didnt like it and i did flare up for a few days but thats life with RA enjoy the good and suffer the bad!!! Congratulations to my cousin and his wife xx

Olympics Part 2

So i went to the olympics with my little brother we had the most amazing day at the olympic village and really felt upbeat at the whole event. We went to see the Hockey and the day started very early!! The train had a lot of fellow olympic supports on which was great you felt like part of some thing. We then had to get from Euston to Kings Cross this was a bit of a treak but then we went on the bullet train which was ace mind not so cool when we nearly didnt get off!! The olympic village was excellent and really thought out well for people with disabilities. The seats we had were amazing and we saw Olympic history with the first penalty shoot out in hockey for a semi final!! We then had the long trip home which wasnt helped by the fact trains were cancelled due to a prob on the line so we didnt get home til gone mid-night!! But we had a great day and i enjoyed spending time with my brother x

Olympics Part 1

So at the Very start of my summer i went to the olympics for the first time with a friend we went to see Badmington at wembley arena, it was FANTASTIC and really got me in the mood for more Olympic times. The day was long though and unfortunately resulted in me having a massive flare up but that's how it goes with RA some times you have to endure the pain to enjoy the fun stuff and i sure have done that a few times!!

V Festival

Well there isnt a lot i want to say here but i'll give you a brief outlook of v fest vicky and katy style! ... First off we got up well early for our travels down to London which the train journey was fine we caught up it had been a while it was like re-connecting after a long time. Then we had the buses lol well what can i say they were fine .. i was hoplessly looking for some thing i'd recognise on my travels into East London .. we did it and got to the hotel to!! We couldnt check in because we were too early! So we left our bags and off we went again on another bus to liverpool street! LOL seriously auir con should be on buses .. hot hot hot!! We then grab some lunch YUM YUM! start our journey to ESSEX on the train .. yeah you guessed it it started raining, how i have no idea!! We get to chamlmsford oh no another bus journey!! Slipping and slidding all over the place!! We get to V fest finally then have a bit of a treak ... LOL yes i nearly did end up in the hole but hey you gotta laugh!!! Next stop MAIN STAGE was brillant even went to the comedy tent but OMG the toilets oh dear the toilets haha bit of a hop skip jump and lift from a stranger woop im in the toilet LOL It was boiling and i didnt take sun tan lotion i had wellies ... rain mack but not sun tan lotion! Getting home in the dark was fun then a random adventure in east london lol .. we then hoped off to the hotel took some random pics of using being silly and eventually ended up in bed and then woke up homeward bound but first shopping and lunch and a panic the train line wasnt working!! Fantastic day full of smiling and laughter roll on 2013 V fest STAFFORDSHIRE!!!

Meeting Alison

So before i went on my holidays i meet my new rhaumtoid specialist nurse at City Hospital Birmingham. We talked she gave me my prescription for the methrotrex and the folic acid. She seem's OK but it takes time for me to trust a new medical professional lets face it i have so many already i like to weigh them up first!! I hope that in time our relationship is as strong as that of my GUCH nurse.

Tenerife!!!!

What can i say i had been looking forward to this break for SIX LONG WEEKS!! It eventually came and it did not disappear here's a short review!! I didnt sleep the night before i was so excited as i hadn't been out the country for a number of years i was also aprehensive about the flight! So 2am came and Carolyn and Tracey were came in like a world wind and before i knew it i'd waved bye to my bungalow and i was off on my adventure! We talked all the way to East Mids!! Tracey about having a vodka caz about reading her book me worrying about flying!!! So we get to the airport and we are sat by the check in gates waiting for them to open and then my cousin (after about 45 mins) goes .. havn't we checked in online? which we had que the laughter and eventual movement to the security area! WHAT A LAUGH!! So we get up there show passports boarding cards LOL and go through i go through yer fine, caz goes through yup fine tracey goes through off come the shoes .. honestly trace you should have washed your shoes ;) funniest thing happens i'm a good girl have all my bottles small amounts go straight through. Then carolyn and tracey spend about 20 mins with a women sorting out what they can take and what they crn't im sat there laughing .. luckily we only lost a hair spray, sun tan lotion and perfume! We then head for the shops and buy more sun tan lotion and some perfume! Then we head to the bar, and i start getting really scared! We have 2 soft drinks and a vodka for tracey! eventually we are called at this point im thinking do i really want togo on the plane lol! It was a long trip to the gate many lifts that my cousin is scared of! We get to the front talk to the lady, i go on the plane a different way cuz of the steps and to be fair i was bricking it at this point an elderly lady asked if i was ok cuz i looked terrified haha i was too!! Eventually get on the plane everything is covered, i took my last painkiller about 4am that morning! i do not like take off LOL as tracey found out when im gripping her hands for dear life! LOL we eventually get to our location im a bit exhausted and feeling a bit shell shocked lol!! Anyway we had an amazing time i took NO PAINKILLERS the wholw time and ate LOADS felt so brillant like a different person i guess! The head really suits me and the RA i think i should just move for 6 months a year!!! I can not wait for the next holiday!! Oh and yes i was better flying back apart!! Roll on 2013 Holidays!!

Heart Hospital

So i popped in to see my cardiac team in September dureing my lengthy travels! I had my sats done with 100% results very happy! I had low BP but thats normal for me because of being on the pill so i wasnt too worried. Had an Echocardiograme which i read the report for it (i am so bad ui read all my notes/ letters too hehe) and that was really good as well. Saw my team we talked more about my inpending medication for the rheumatoid than my heart they were very nice and reassuring gave me a lot of confidence going forward. Overall on the bright side heart is good :D no problems they said in the 2 min conversation we had about my heart.

Weymouth

So i went on my Holidays in september! Had a fantastic time! My last stop was Weymouth, i went with my cousin, uncle and the girls. It was good to have some time with the girls and enjoy some family time. We laughed and joked went swimming well i watched but my uncle did first time in many years the girls loved Grandy in the water!!! We went to the beach which was real fun we made sandcastles and had donkey rides too! I was very lucky my joints did me proud, i was a bit stiff in the morning and late at night but my cousin was on hand to help and even the 3 year old would help cousin vicky which was so nice :) she helped me do small things like give me my trainers bless her. All in all a great break and enjoyed spending time with my family :) xx

Tough week

I've got a lot of catching up on my blog to do .. so i'll start with the most recent and work backwards hang on in there!! So the time finally came when i would start new medication MTX (a chemotheropy drug). My first in stings were i dont want to take this drug i do not want to put this medication in my system. I talked LONG and HARD with many medical personal from my GP to my Rheumatologist to my Cardiologist to my specialist nurses they all said the same give it a go Vicky lets get you feeling better. Now ive known my GP for many years he was the one that orginally told me i had Rheumatoid 4 long years a go, so i trusted his judegment. Ive know my cardiology team for 10 years now and to be fair i trust them with most things well in fact everything not just my heart but every thing if i have a problem they are the first people i go to for advise and reassurance with regardes to health matters and even when my mother passed away. I trusted them i'd be ok! Everyone told me the same, you've been through so much Vicky you will be fine. So Wednesday came, i wont lie i sat there with Tracey and i cried and i um'd and ar'd about the tablets i cured people mainly my doctors! Then i took the plunge one tablet two tablets and that was it my journey had started. I tried some food after the tablets what a joke it made me feel so sick it was aweful, we went for a hot chocolate as i didnt want to be on my own for the first few hours and you know the smell in the coffee shop and me want to puke every were, it wasnt nice!! The day continued i felt so sick bringin up some food but i kept going. Thursday it got worse my head was so foggy i wasn't sure what my name was lol my head hurt as if id been on a week long bender! I felt sick my joints were flareing i was so so tired. My stomach felt so dodgy like a constant fizz in the pit of my stomach too Friday came still the same no better .. the weekend came and went still feeling the methrotrex hangover! We get to monday my throat's hurting i feel so darn low emotionally and physically time to see my GP he tells me i have a throat viras which hasn't helped my MTX first take. My rheum nurse says its the end of the line for MTX and me and if im honest i dont want to go through that week again it was the worst i've ever felt not sure i could do that every week for the rest of my life. Do i still trust my doctors of course i do .. will i listen to there medication advise again .. we'll see, lets hope next time i dont feel so darn bad!! I would also like to mention the help and support from my family and friends this past week so many of you to name you know who you are you're all fantastic and i love you all THANK YOU This week has done one thing for me proved that i may be single and living life on my own but if i can get through that without a man holding my hand well hair while im sicking it up then im a dam good fighter and i can survive anything. xx

Its been a tough for months

Hello all, Since my last blog ive had a really tough time both rheumatoid and personally but things are starting slowly to even out again now, so though i'd give you an update on the rheumatoid. So the one big news i have is that my consultant told me i have Mild Fibramalgia which seems to be quite common with people who have rheumatoid so i've tried not to let it get to me so much, its just another obstacle i need to over come. Secondly is that i have decided that after discussions with both of my consultants and understanding the pro's and risks that it is time to take the risk the medication it is scary to think that i will be on these drugs. But my consultant has introduced me to the whole team so i know them by name and sight which was a nice touch. I can not really put fully into words how i feel nervous, scared, apprehensive all come to mind but ultimately i am scared! I will be on methrotrex and a biologic and see how that goes. This means an aprox 3 tablets a week and self injecting myself although i'll have some one else do it for me! I'm still coming to terms with this news but it will sick in eventually. Thirdly i went swimming for the first time in a while which was great i managed to do a couple of lengths certainly got my heart going! I felt so happy with myself but what i enjoyed most was sitting in the hydro pool first so relaxing on the joints! I am still fighting and proud of raising Rheumatoid awareness Keep strong all xx

Social media brining rheumatoid suffer's together

When i was diagnosed just under four years ago, i felt very a lone and that no one understood what it was like to be me. Now 4 years later my friends and family have become more supportive but they will never fully understand. I needed to speak to people who really understood what it felt like to live with this condition. The modern world lead me to Facebook and Twitter which subsequently lead me to meeting some amazing friends who really do understand and the great thing is they are from across the world and although our medication and treatment is different the symptoms and pain is the same and we get comfort from each other. The great thing is with insomnia one of the many things we go through there is always some one on line to talk to about your concerns or pain. We celebrate achievements together and are there for each other when things are bad. Social media also helps to get out messages out about what rheumatoid actually is i think it's fantastic and one good thing to come out of social media. V xx

Driving

Good evening all, Today i drove my car for the first time since the end of last year due to flares. I have to be honest it felt amazing to be back behind the wheel again, my brother was in the car stressing out as i was driving lol! It was a little weird to be behind the wheel again my hands did hurt a little bit but i think thats because i havn't done so for a while. Now its been a few hours since i drove and i have not gone into a major flare up so i feel really happy and relieved. hugs xx

hand flare

Well today is a short blog, im in another flare up mainly in my hands and feet. I'm sleeping a lot in a lot of pain but things will get better i'm sure. Looking forward to getting stuff for my home saturday with my cousin its all coming together slowly :)anyway wanted to show you my hand during a flare ..

As you can see my knuckles are very swollen and painful. blog soon xx

Feeling trapped

So ive been thinking about stuff these days few days due to talking to several people with in my team and it just cries out how trapped i feel. Pre-rheumatoid i was different i could go to football matches, i could go shopping, i could go on days out on holiday even at the drop of a hat i did what i wanted when i wanted i was maybe you could a sper of the moment kind of girl.

Now my life is so different i just dont know when im next going to have some fun, i try to think positive but deep down i feel so trapped in this small town were transport is shocking i can not even use the train station because u have to go over a bridge! The buses are just irregular and not great for the wheelchair anyway. I can not go/do anything on my own and it winds me up i have needs to do things like any one else, i want to go and cheer on my football team, i want to walk around the shopping centre for hours just because i'm a girl! I want to wake up and think you know what i'll take a trip to the seaside today because its a nice day no i can not do any of that instead i have to sit in these dam four walls and if im not in these four walls im sat in a stupid wheelchair unable to go/see what i want to do being "taken" by some one else .. what life is that? it truely is so fustrating.

xx

hands

So this post is about my hands ..

Before i got rheumatoid i had normal hands over the past 4 years they have deteriated because of the way in which the condition works attacking my joints. Unfortunatly i never thought of taking pictures throught the past 4 years but i have some pictures now which i'd like to show you.

This is a picture of my hands 12 months ago as you can see there is damage and this is my hands not in a flare, they have got progressivly worse. and the second picture stuck in a fist is my right hand.




Sorry for the pictures being out of place, im still getting use to were they go when i upload them on to my blog so please bear with me it will get better

xx

my knee

Ok so this post is simple about my knee and showing you what happens during a flare, as you can clearly see it becomes enlarges and painful. What you can not see is the heat that comes off the joint, you can feel the heat through the clothes you are wearing.

xx

ra joints

One of my friends Tim has posted this on facebook and i asked him if it was possible to post it on my blog.

As you can see the left hand is a normal joint like everyone else's, the second joint is that of a person with osteoarthritis. Finally you reach the right hand picture which is rheumatoid joints as you can see they are swollen and there is bone damage.

I hope that you find this picture interesting x

Travel bug

So i was overwelmed to find out that British airways can take electric wheelchairs on there flights as well as manual ones in fact you can take two for no extra cost! Now i have a major travel bug, which no one seems to understand why or how! But this news excited me so very much and knowing my max flight time ive set myself up for research and the place i can go to and with the electric wheelchair maybe even by myself a lone traveler imagine. It feels like the world has been opened back up to me :D


xx

adaptations

So things have started to take shape it feels like such a relief finally its getting done!

Thursday just gone i had a few things done the first is more cosmetic but highly exciting finally the red lights in my house have gone they are no more, i didnt like them much and now they are gone from my wall, very happy sight!

The second after having concreat ramps in place at the end of last year so i had no steps this was not satisfactory because of the fact of a lip on the door frame so on thursday i finally had a ramp put in place and i took my first steps outside my front door as an independant person alone IT WAS FANTASTIC i only went a little way i actually nearly cried! I finally feel as if things are improving ill be wipping round the place soon enough alone lol :)

xx

Manchester

I was very excited this time last week as i knew i was going to manchester tomorrow! It was a long drive up but a good one over all apart from nearly ending up in liverpool, but we wont mention that! I wore some black combats i hadnt worn in a while felt good! We eventually got up a lovely man carried our bags or im sure my suitcase would have caught the wheels on the wheelchair! The staff at the hotel were really good.

The room its self was really wheelchair friendly with a walk in wardrobe that i could get into as well in my wheelchair but the best thing was the 2 bathrooms in 1 hotel room one was totally wheelchair friendly the other a normal bathroom for my cousin i thought it was fantastic!

My cousin helped do my hair which was great i finally had straight hair again it was so lovely! Then i got read i wore my new pink jeans i felt really modern and groovy! I wear a certain named jeans because of the cut which is loose around the knee and the ankle i love them.

The taxi was great had wheelchair access a ramp so easy to get in and out of the taxi fantastic service and a friendly guy.

Upon arriving at the MEN we had to go up in a lift which was fine got into the men and found our seats again fantastic seats i crnt moan!

Overall the people of manchester were so helpful with doors etc was nice! Great time had by both of us.

xx

Disney On Ice

Now i forgot to update on this day out!

I was up early and got ready and waited for my cousin, aunty and little one to pick me up. I was ready when my cousin arrived so we got in to the car and then off we went to the NIA. When we arrived we wasnt sure were we could be dropped off as a wheelchair user. So we parked up near the disabled parking. I got out the car and into my wheelchair with little one on my lap we walked around the NIA and was looking for the entrance for disabled customers it wasnt overly well displayed. Once inside the NIA we went up for the show we found our seats which were good.

Disney on Ice was excellent we all really enjoyed it. The princess's were amazing as well as the hero's it was so well put together and has equally made me excited about going to eurodisney in july. Over all a fantastic day out.

We then went to meet my aunty after the show and got in the lift to go back down and we urm got a little stuck, the lift didnt move we tried it twice and still no movement so we swiftly made out way out of the lift and used the other lift.

Disney On Ice was fantastic and i loved it as did my cousin and her little girl it was a really good day out and i look forward to another day out soon with my family.

With love

v xx

My heart

So after 2 long years and a few days of serious worry the time came for me to go back to my heart hospital to see how it was, i was scared and worried but i knew it had to be done.

I was up at 8.30am to get ready for my day. I then went to the bus station with my brother to await the bus. Lucky a bus came earlier than expected and so the journey began a 1 hour journey to Birmingham it was quite and long! We then had an hour to use so we popped to the bullring and had a hot chocolate and then we looked around a few shops to see if there was anything i wanted!

We then went to pick up our tickets for the journey to London Euston. We got on our train with help from network rail workers for a ramp. For the next hour and a half we made our way down to london it was a good journey. We arrived at Euston and eventually wad helped off the train by a virgin representative which was good! We then got my brother's oyster card topped up and then off we went to the bus!

We got the number 30 bus to baker street now you may have guessed my brother has never used public transport in London before and he was really impressed he said its a lot easier to use the buses down here! We then walked to the heart hospital.

After that its a bit of a blur as i saw my GUCH nrews and had a good chat with her about things and then was sent down to have an echo we was waiting around 3 hours! We then went back up to see my consultant as we was going up i looked at my test results and i exclaimed to my nurse well the echo looks good!

After about 15mins i went into see my consultant and i had perfect Blood pressure, 99% sats and heart rate was fine! I am under weight to which he had asked for me to see a dietition again as feels i need better support with my eating. But he said as far as i am concerned your heart is fine and that we could not go for some treatment for my rheumatoid arthritis!

I left with a smile and if i was walking i'd definatly have had a spring in my step! We then got the 18 back to euston and we had some thing to eat although i couldnt eat much because i was so happy with my appointment.

We travled back to birmingham and missed our bus so we waited for an hour then we went bk to bus stop to discover that this was a friday only bus so we had to get a taxi home!

The good news is my hearts in a good state and means medication for my rheumatoid arthritis can now start, happy times :)

v xx

Big far blood test

Well today was the day i had to have a blood test. My cousin came with me as i have a needle phobia. I was brave and had my blood test, my cousin helped by making me occupied with my doctor did the blood test.

I felt rather sick after the blood test and had to have a sick bowl from the doctors! Ive got to ring them on thursday to find out whats going on with my body, lets see rheumatoid has/is doing.

My arm is bruised still.

I dout i'll be able to have bloods done as regular as i need them because the vains are weak and dont give much blood!

So my Monday morning involved a blood test and resting!

Upcoming Heart Appointment

So 24 months has past since ive been to London to see my lovely heart team! To say i am excited sound a little weird but they are like friends/ family to me they have been on such a journey with me since turning into an adult "GUCH" (grown up congenital heart) patient. I mean we have seen partners come and go together lol, my mother passing away, rheumatoid setting in and eating problems establish themselves, i wouldnt change my team for the world!

At points over the past few years i think they have been my first point of call for advise, understanding and general kicking me to get my ass into gear!

With the excitment of seeing my team there is of course the dread of seeing them i mean 24 months in a heart patients life is a long time. I am hopeful of a see you next year unless you have any problems senario but with CHD you just never know!

March's excitment!

I normally have less pain during summer i am sure its because i am more happy with the sun being out and i hope this year i can have some fun as its been a long winter. I know it is only march but let the fun start!

I am off to see Disney On Ice at the NIA in two weeks with my cousin and her eldest and i can not wait .. we are going to see tinkerbell dance around the ice! It will be nice to spend some time with them both bit of a girlie morning!

Then im off to JLS at the end of the month which i can not wait for not seen them for 2 years on stage! It will be a good weekend with my lovely cousin, jls, shopping and food it will be a couple of days and be nice to spend time with my cousin!

I have lots of exciting stuff planned for this coming summer and hope to see lots of my friends and family a long the way and as we get there i'll of course let you know what im going to be doing and of course how it went afterwards.

Will also let you know how the NIA rates with wheelchair friendlyness! I have not before but i have been to a few places and had excellent service so lets hope they match the excitment!

Its been a long winter

Simply by the title you can get the gist of this post!

This past winter has been long and painful in fact ive slept so much just thinking about it seems unbelievable. Ive had no energy often staying in and happy with my own company with my music on or a good book, its been long its been painful but its over!

This winter i managed to go to a few things, olly murs and the saturdays which i am glad i got to go to as other wise winter would have been worse!

I've had many flares a long the way often lasting weeks some times leaving me unable to get dressed. Alot of the time moving seemed a lot of effort with me wincing in pain at just getting up to grab a drink or such.

Its seen a lot of changes to, learning to live on my own accept help throughout the day but it has been worth it because now winter is over and i can enjoy my summer before the big rheumatoid decided its ready to show its face with force on its mind in sept to make me miserable!

So here's to the summer :D

Birthday

I started this blog as a 26 year old with rheumatoid arthritis and now i am 27 years old still with rheumatoid arthritis!

On my birthday i woke up and i gave a little "woop" because rheumatoid was giving me a break i was pleased!

I got up and picked my brother up from college with my dad, then went to have my reiki which was nice on my birthday to! Then me and my brother and dad went for some thing to eat which was lovely as we dont often do it as a family.

I went home and opened my cards and gifts from, family and friends and looked online to see i had so many birthday messages from friends and family i was truely touched by them all thank you.

Then i saw my cousin and her girls and that was nice as always. Then i just rested up and hoped that the next year would be a good year for me.

So a huge thank you for all my birthday messages ive recieved through out the past week they have all been so nice ive been touched.

xx

Big fat flare up

So its been a while since i updated sorry about that just ive not been my self. As you know 3 weeks a go i went to see the lovely olly murs in concert and to be honest it was amazing. But that unfortunately started a major flare up it has been really tough.

Ive slept so much ive been confused as to what day it is as ive been sleeping for hours! The pain has been unbearable. It is has been that server that i had to totally cancel all appointments for 7 days and slowly ease myself back for the past 2 weeks although still not feel well, my shoulder/elbow and back is hurting a lot at the moment i just fell so run down.

I am lucky to have some great friends who keep my spirits up and my reiki has helped me through some tough times as well.

xx

Transport and London for olly murs

So this past weekend ive been on one of my adventures which always cheers me up but i felt i should instead of concentrait on the amazing time i have had seeing Olly Murs in concert and seeing my lovely friend .. look at transport in a wheelchair.

So Saturday evening it was 50/50 if i'd be going after the UK had a down pour of snow and we had around 7 cms here couldnt have come at a worse time, not only snowed in but also unsure if i'd get to go!

Sunday morning i was very lucky as my farther managed to get out of his village and drive me to the train station. My first mode of transport, now going in my own car is fine, as its at a good level so easy for me to transfer in and out of which was great an ideal in the snowy conditions also a nice warm car makes me happy! Wheelchair fits perfectly in the back!

Now on to Birmingham New street i went. Now this is were my farther and brother leave me! I got my tickets from the fast machine. You see when you book your tickets you do that as normal but then have to ring the assistance number for in my case virgin trains. So after arriving at new street and getting my tickets said bye to my dad and brother i was on my own, in the hands of virgin and network rail! They were fantastic i sat in the mobility assistance office for a while had a chat with some of the guys working there which was nice, had a giggle to myself about! Then a nice gentleman from Network rail got behind the wheelchair and took me in a lift with a fellow wheelchair user (although electric) and took me down to the platform to await my train. He put the ramps down and helped me to my place on the train and off he went. It was an ok journey saw a lot of snow and got a little bored of the conversation next to me! Upon arriving at London Euston i waited on the train until the mobility assistance guy assisted me off my train and left me as he went to get another wheelchair user. So my friend and her dad came on to the platform and got me! But in all fairness well done Network rail!

Then another car journey which as for the reasons above i enjoy, plus a good chat with my friend and her dad.

We arrived at the hotel it was abit icey and snowy but nothing i couldnt handle with a little help and a good transfer! Lucky the pavements were good by the hotel not sure if thats due to the hotel or the local council but who ever it was good effort!

I then had a nap for a while then as i was tired from my trip and wanted to stay awake for the concert we were off to see. I then managed to get myself ready for the trip adrenalin kicking, i'd pay for this later! My friend and parents arrived back to collect me in the car and off we went to the o2 arena! I found out some facts a long the way to, i just love facts!

Then we had a bit of a mission of a walk into the arena better salting was needed! But luckily it wasn't to bad! We were in a massive que to get in then one of the o2 people fast tracked awesome, thanks to that man! We went in the VIP bit only to the lift though! We went up to the 4th level and then found our seats which were good when you think we got them last minute literally 2 weeks ago! The staff were very helpful but i do love my wembley concerts (sorry O2!!!)

The concert its self was amazing really enjoyed it, olly certainly has a way with the ladies, flirt, love it! Also Rizzle Kicks came on stage for "heart skips a beat" the last song of the evening which was epic! Only thing was a lot of people were standing up in front of me which meant i couldn't see everything but i enjoyed the atmospher and the lovely olly singing!

We left the o2 arena and then had to keep right to head into North Grenwich tube station now keep in mind i have never used the tube before hand as a wheelchair user i was a little aprehensive. In all honesty i thought it was very good! We qued like everyone else until we got near to the front then a london transport assistant saw us and took us through and skipped the huge que thank you! Down a lift which was good, got the ticket for my travel to stratford, then through the wheelchair space! Down another lift and this made us laugh it was like a strict teacher talking to you scary! Then on to the tube its self made sure my breaks were on! The tube was a good experience over all. The only wheelchair friendly tube line Jubliee well done TFL great experience, pat on the back!

Once at stratford we had to use more lifts to get to ground level! Then we walked over towards the buses. Now we waited and waited but the bus we wanted didnt come so we got a 25 instead the bus was clean and fine. Now let me tell you about London Buses now i dont use buses at home because they are a pain in the rear end with about 1 in 3 with ramps makes it a nusence to say the least. But not in london every bus has a ramp and special wheelchair area and they are always good. Mind you after 3 buses and a walk i was shattered well i'm a night owl so couldnt get myself to sleep til gone 2am!

We woke up this morning i eventually got moving i was very stiff and my hands certainly did not want to open i was in a lot of pain but i battled through. Now we were to get more buses the first bus that came along did not stop for us as could not get close enough to the curb for the ramp. Then a second bus came and did manage it however it was slightly funny as we went on the bus backwards the ramp wasnt down properly for some reason and the wheelchair ended up going backwards yet i was on my back and my friend was on the floor as well! We was rescued by an italian (have i mentioned the man on the bus giving me the eye oo he was nice!) we were lucky enough to both be fine and continue with our journey although my laughing did not help! We then did some walking to my friends house as she needed to drop her bag off and i've got to say she did VERY good with the pushing of the wheelchair in the snow and ice, well done mate! Although i will have a little moan and wonder why hackney council had not salted the pavements? I mean it could be dangerous to people! Then we got another short bus jouney! Then the long bus journey now im not one for public transport i get bored and fustrated espically with buses. We eventually got to Euston! Had a bite to eat well i had some garlic bread and a few chips but it was nice anyway!

In summary london buses are free for wheelchair users and all as far as i am aware have a ramp and you have your own button to press so the driver knows to put the ramp down for you to leave the bus, overall i like london buses!

Before i knew it, it was time to say goodbye to my friend and start my journey back home, now as normal the people in the mobility area were very nice and kind! Oh i forgot to mention booking a taxi to collect me from Birmingham to get back home!

Now as i was taken down to my train at euston the guy was told by the train manager that the standard class disabled toilets were not working and i'd have to sit in first class, thank you very much! So i had first class travel all the way home! Ive got to admit it was really nice lol! We got to birmingham new street and they couldnt find me as i was registered in standard so they went but were called back to collect me! They did apoligise and then we took the 2 lifts up the concourse and transfered into awaiting taxi that brough me home and i was so happy to see my dog again! Feeling really stiff and tired tonight but had an amazing time and i am looking forward to my next adventure Disney on Ice in march!

Overall had an amazing time really was fantastic and id like to say a huge well done to the public transport system for this weekend :D

See you in march London

OT and me

So today i had the occy health come out and look at the property again. So a few changes are hopefully going to be made.

I forgot to ask her if we could move the plug sockets so they are more easier for me to reach. But my door lips are going to get hopefully flattened sooner rather than later, we talked about possibly widening the kitchen and front room rooms to give me extra room. The kitchen needs redoing so it is more friendly, the bathroom sick needs lowering so it is easier mainly in the morning! Oh and heating needs sorting out i mean my hearing is on 30c all the time and it is still cold! How stupid is that!

She was very sympathetic and could see my worries and concerns about the property.

New Consultant

So i have a new consultant i meet him on Monday and im really positive he has hope that although a long journey a head certainly a journey to take. It will be long painful and i suspect some hard choices to take a long the way but im ready because i believe in him, he's going to speak to my cardiologist so that will help him no properly where the boundaries lie and what he can and crn't do in terms of medication etc.

His aim is to get me out the wheelchair ... my aim is the same

So here's to some hard and challenging times a head ive no dout but lets get on this road and see were it takes us.

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.

x

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.

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

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.

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 :)

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.