Friday 19 July 2013

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

Saturday 6 July 2013

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

Thursday 4 July 2013

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