Five years on

This is the hardest blog post ive written, five years on from my journey starting with rheumatoid. As i write this its exactly five years on from the day my mum died. Now if you have ever lost a mum you will understand the pain and grief of loosing that special person in your life that you love unconditionally. I will always think about love and miss my mum unconditionally. The thing is that morning i was crying into my uncles arms telling him i couldnt believe she had gone i never really expected my life to change so much. I mean i knew life would never be the same but i never expected what happened next. Rheumatoid happened next i started getting pain in my joints, i got told it was grief. After a lot of talking to doctors i got a blood test and got told i got rheumatoid arthritis i didnt really understand what it was. 5 years on i certainly do. As i write this im 28 years and 6 months and i have rheumatoid arthritis, fibramalgia, depression, insomnia (hense why all my posts are late at night and an eating doscorder that im battling .. who said the last 5 years havent been eventual. So along with fighting the pain of loosing my mum dealing with the grief ive had many other battles to fight, my heart is a life long fight, but then rheumatoid went from a few pains to not being able to get dressed to not being able to jump out of bed to not being able to walk on bad days to being dependant on a wheelchair. relationships and friendships we have had many highs and lows ive lost a lot of friends and i dear say i will loose more when they read this eye opening post. fibramalgia i wasnt expecting it but its tough, not only do my joints hurt my muscles too the excritating pain of these chronic illnesses should never be taken lightly. depression, well who wouldnt be after the five years ive had. Ive had some dark days where ive sat and cried and asked WHY ME??? insomnia .. well this has been something ive suffered long before my mum died but 5 years on i havnt had a proper night sleep, every time i sleep i just feel guilt why was i asleep when dad came home why wasnt i there for my mum. eating disorder this will shock many as ive never spoken about it, i lost a lot of weight when my mum died to be exact 2 and a half stone .. im just 5 stone 8 now (at my last weigh in 3 weeks ago) its been a tough and long battle but i am trying to beat it but its just not as easy as well just eat. Dont get me wrong the last 5 years ive had lots of fun too in a way my mums death made me stop and start enjoying life to the fullest. Ive made some fantastic friends in the past 5 years who id be lost without. so tonight as you sit reading this remember lifes a battle but u have to keep fighting in loving memoey of my mum sue we all miss you and proud of your fight xx

Health

So i guess ive not updated for a while on my general health so i though id do it now. Ok so i started back on MTX i wont lie its tough on me. im shattered for a few days and have a headache for a about 5 days, infact its like ive been on the drink for a week, not the best when i havnt had the fun as well! I take it once a week and then folic acid 6 dayds a week so its become part of my routine. My fatigue is quite bad recently ive been sleeping more. I have gained weight though which is a definate plus its been a long journey but im getting there. My asthma has been playing up too which isnt helping. Im due to start physio finally later in the month and will update you with that once ive started it! Im having a few issues with hearing things since my recent sinusitis infection so im off back to my doctors this week to get a referal back to audiology as i use to them as a child when i had gromits! Back at heart hospital in September for a check up have to have an echo abd ecg this time as had server regorgitation so im guessing it wont be long before the big open is upon me, i know one day ill need to have open heart surgery but im thankful that my original surgon did such an amazing job that at present its not needed and im 29 in 6 months! I was at the doctors last week with a few issues ive been having ive got to have some blood tests firstly for my mtx as well as some hormone tests they dont really know whats going on with me, it could just be my hormones playing up but they also have to test for cancer and its pretty scary but i am hoping that its nothing and i will be ok but thats just life and what ever the outcome of the tests are ill get through them with my own determination my family and friends by my side xx

Disneyland Paris

Well as you may have guessed i popped over to disneyland this past weekend. With my cousin her husband and there children we had the most amazing time! We left early friday morning i was shattered and didnt hear my alarm lucky enough my cousin came and woke me up! Off we went to the airport! We got on the plane after a short wait and off we went the adults not knowing how the kids would find flying, they loved it!! Disneyland its self was amazing so much to see and do. The disabled facilitites in the park were excellent the toilets were good and the fact you could have a disabled card which meant you didnt have to wait in 1 hour ques for rides really did help with our trip. every one had a fantastic time, long days and short nights! I would love to go back again as it was fantastic only thing i would say is there curbs were HUGE!!! Overall a fantastic weekend with my family, meeting mickey mouse and minnie mouse was a particular favourite of mine! Although seeing the girls with the princesses was great too they enjoy it so much. Im back home now and still feeling fatigued lol but the more i sleep the worse my joints feel!! I wouldnt change the weekend for anything v xx

Coping

A lot of people say to me how do you cope? I admire you and Your doing just great vicky. But the truth is I'm 28 years old and I have to cope. This is my normal since I was 0 being at doctors going to hospitals being poked and prodded and asked are you ok? Since I was 23 being poked and prodded has become even more routine! In fact I'm at a loss when I don't see a member of my ever expanding team! How do you cope on your own? I have to cope what else can I do sit and fall apart that's just Not an option for me! I'm a fighter I get on with it. I wont lie and say It doesn't bother me because to be fair the amount of doctors as well as medical professionals that I see I often call them friends of the family lol! People say to me but dont you wish you were "normal" my answer this is my normal its pretty scary at times it's been a tough road but its my journey with my friends family and medical team so yes normal is seeing medical professionals every week I often give a confused look when people say I don't like the doctors why ever not they are great people and I for one are thankful for all there love support and hard work they have given me since 1985 up to now my team are the greatest in my opinion xx

France June 2013

As i blog about the exciting things i get up to i thought id give you a quick view of my trip to France!! As you can imagine Tuesday morning i was up really early for my journey to begin to France, i was up at 3am and as you probanly guessed rheumatoid dont much like early mornings! I eventually pulled myself together quickly added plugs to my case and my pjs and i was ready to go! The taxi arrived on time and as my brother took my case up i waited patiently then i was off to the airport!! Now for anyone the airport is a boring experience but being in a manual wheelchair it really is boring u get dumped in departures lounge until your gates called then your off on a bonus your first on the plane! Now im sure ive said it before but im not a fan of flying and to be sat alone was even worse! As we took off my stomach was grumbling and i was spelling my name in my head and counting then i feel asleep lol! Next stop Nice airport now remember ive never been here before! I was a little starlted to arrive to be told we dont have a lift to get off the aeroplane .. first thought... im going back to the UK lol second though OMG they are going to carry me down the stairs! I wont lie i was scared and at one point they put me down om the steps and i was literally 2 wheels on the steps and faceing downwards .. hands over eyes at this point and an old couple looking at me looking as scared as i was! Eventually got down and my wheelchair wasnt there like in the UK so i was like oh no french have lost my wheelchair lol BUT no it was with my case in arrivals! Then the exciting bit happened i met my lovely friend Jo who i met on facebbok i was so excited and so hot! We had a great day we went for a drink near nice and then off to get some cheese which i wont lie i loved and we brought some for later! We had a little tour til we got back to jo's and then we got ready to go out in the evening. We visited many new places (for me) and i met lots of new people and i enjoyed my food and got a bit tipsy enjoyed music festival Nice style!! French market on a sunday and talking english about what people were wearing! We laughed alot, we did sightseeing and even went shopping and lots of nights out of course! I can not forgot to mention the beach which was really enjoyable! A bit about france, if your in a wheelchair be wary of this beautiful country it isnt made for wheelchairs! Although being carried upstairs by fit lads when going upstairs in bars is an ovious highlight! Becareful not be caught short, accessable toilts arent as widely avilable as in the UK ... we found 1 in Momaco that was locked! But France does have fantastic beaches with areas just for those with disabilities and if you crnt walk you get a sunbed (bonus) and they help you in and out of the water, i crnt lie the lads are fit too that help you!! I met some fantastic people on my trip to France of course Jo who i really enjoyed getting to know in "real" life and all of her friends through out the week. Oh and i even got cheese to bring home with me which i admit was yummy! Oh and im not scared of flying any more no belly ache taking off to come home just crying because i didnt want to come back to the UK! I came home to start french lessons because when i go back (if jo will have me!) i want to have some basic phrases ready! with love v xx

But you look so ...

In truth its been a really tough few weeks. I had the most amazing time in France i felt like vicky again! I was smiling wearing dresses and eating quite a bit for me but then my pain was low and rheumatoid in near remission. Plus good company and the beach boys helped too! Oh and of course the wine helped me become the old/new vicky! However previous to my week in France things were goimng wrong and i avoided them until i came home from France maybe not the best thing to do! On my return i started my countdown to restarting Methrotrexate which im sure you all remember last tome made me really sick and the wallpaper was definatly moving towards me! I know i need to restart this medication because its a chance for me to get my joints into remission and maybe then everything else will start clicking into place, physio and such as like. Im 28 and people say to me " you dont look old enough for arthritis" Rheumatoid is an auto-immune condition that doesnt just affect our joints it affects our organs, hearts, lungs, brains etc Rheumatoid is such a horrible diease that it has to be controled bu medication on the same level as chemotheropy and my treatment is in fact chemotheropy and its not just for a few weeks it could be for a lifetime a lifetime on chemotheropy a lifetime of feeling sh*t although ive been told it does get better! Rheumatoid doesnt just affect me, it affects my family only yesturday my young cousin said "why isnt vicky waving properly" because i have poorly hands was the responce. My family see me in pain every single day they see the tears, the ups and downs of life. Deverstation of loosing my ability to walk the re-adjustment to life in a wheelchair. Rheumatoid affects my friends too they see me upset, fustrated and sometimes angry at thwe way rheumatoid has destroyed me but they see me having fun. People always think im positive and happy but life with rheumatoid is none of them things its a real TOUGH time but i get by with a smile on my face and the love of my family and the kindness of friends. With my upcomimg treatment im feeling quite emotional but more than that im feeling isolated and alone in the treatment before i felt like i had many support outlets however this time i feel as if im alone to be sick and fight the flowers! It will be tough but ill get through it because like everyone says to me "your vicky you'll be alright" The affects of rheumatoid is catascophic to anyone it takes away so much. It has given me so much too like new friends who have rheumatoid that understand, it makes me fight but i already did it. People say to me "how did it feel when you was diagnoised" to be honest i didnt really take it in i broke down on the pavement outside but that was because i felt like i was having my life took away as id only lost my mum a few months earlier. The wprse thing abour rheumatoid is relationships people dont stick around they can not cope with rheumatoid or the low mobility and then i start to feel like im just a usless entity but thats what rheumatoid wants you to think. But then friendship is affect people come face to face with rheumatoid in full flare and they can not cope with it they run they distant them selfs buit always say "we're always be there for you vicky" but they never are during flares its too hard to cope with hey wish i could run away from a flare too but thats life! Rheuimatoid you may wear me down but you havnt won just yet Vicky xx

Update from me!

Hello Well since i last blogged ive been on my holiday to fueterventura whuch was fantastic lovely sun and eat well! Up on my return from the Cannaries i've seen my consultant and had some Amazing news i have only got TWO active joints and two tendor joints which means that my rheumatoid is reacting well to my battle with RA. My consultant was really pleased and decided that we could start physio and we have decided to restart on methrotrexate which as i explained before is a type of chemotheropy drug so thats nerve wracking but some thing that i will face again. I am off to France next week to see my friend and fellow rheumatoid suffer so thats exciting. I am hoping i get some warm weather in france to top up my joints good mood lol! Here's to a hopefuly pain free summer 2013!!!!!