Monday, 4 May 2015

Knobhead and me (rheumatoid!)

I'd like to take you back to 2008 I was a bouncy young 23 year old! My mum had just died of secondary cancer. I was feeling low and uncertain of what life would be life without my mum but I never expected things to go the way they did.

You see a few weeks later I got pains in my feet and my hands and I wasn't sure what they was, so I went to my doctor who told me it was I quote "grief" and just to carry on so I did just that but it got worse and my hands started to become clammy I was scared it was my heart condition. So I rang my cardiologist in London and they agreed to see if nothing else to put my mind at rest. So off I went to London expecting him to say the same as my gp it's grief or your hearts playing up, I wasn't really sure what I wasn't expecting was my whole life to change.

I had an echo done that day and saw my nurse Fiona, next stop seeing my consultant and I remember going in that room in September 2008 like it was yesterday. I told him how things were with me and said yes I was very sad, no I wasn't looking after my self that well, yes it was putting everyone else first, my family needed me. Then he said well it's not your heart, oh the relief another year of all clear. Then he said can I look at your joints more closely I said yes of course, he looked and then he sat for a minute and said to me, "vicky I think you have rheumatoid arthritis" I looked at him and said oh right, I don't think it really struck me what it meant. He told me Togo back to my gp if I wasn't feeling better in a week.

Now that week past and it was at the back if my mind what is this rheumatoid thingy, what does it mean? I really had no idea! After a week things were not better, unfortunately, so off I went back to the gp and in true vicky style it old him how it was, my cardiologist thinks I have rheumatoid arthritis what do you think? He told me two things that day first was we need a blood tests which he did so I couldn't get away! The second was and I'll never forget these words "I hope you don't vicky you have enough to deal with."

I waited another three weeks and I went back at this point I was just feeling joint pain but nothing major I though well this is fine I can live my life like this, oh the blindness of the situation. I walked into that doctors room and sat down and he said vicky the tests are inclusive but looking at your hands I think you have rheumatoid arthritis WHAT??? I was told I'd be transferred to my local rheumatology department at Worcester hospital, hold on this was getting serious now a consultant? What? It's just arthritis right? Yeah I was 23 I was nieve! Now I wasn't going to see my new consultant, who to be honest with you I thought would just say nah your alright! 

So six months and I didn't know what todo with that time, worry, panic, live life, cry, what the hell my life was up in the air, I'd just lost my mum, the doctors think I have a condition I have quite frankly never heard of, I had no control of my life so I started to skip meals, yeah bad eh? The start if my eating problems, but shh I told the doctors I was fine, eating normal! 

In that six months I had a few what I now refer to as flare ups and they really scared the shit out of me! Oh and I turned 24! Now the first flare up was so weird it was my right foot (even writing this I'm currently moving my right foot!). Now it just ballooned over night, I mean I couldn't even put a sheet on my foot let alone wear a sock, what was happening, I actually though I'd broken it I was quite convinced if I'm honest! So I went to the doctors and he said vicky this is just the condition this is rheumatoid, he looked sad for me if I'm honest. I didn't believe him though because this was not normal! So I went back the next day and said I want a different doctor and he said the same, I cried that day, what was happening to my body? In the end my doctor said lets do an X-ray, ok I thought great stuff, he told me to take some painkillers, I'd never been one for painkillers, got to admit they made me feel better though! The next day I went back to the doctors and he showed me how it wasn't broken! But in fact it was rheumatoid the damage was done, I still wasn't sure about this rheumatoid lark, surely it was just grief, they said it was grief!

During those six months, I had periods of not being able to get out of bed, thank you cats for the company, I had periods where I couldn't get up or down stairs, I needed to be carried at 24, unreal. The worse was the day I woke up and I couldn't get dressed the pain was so bad, this rheumatoid wasn't friendly eh?!

Next stop meeting the consultant, after having some tests I walked in to his little room. And he said "you have rheumatoid arthritis" I was 24 and he gave me some books from NRAS and Arthritis UK and told me "you have it live with it." I don't know what I expected being honest I walked out that appointment with another to discuss treatment once the shock had worn off, I collapsed on the floor in floods of tears, I was sick really sick. In true vicky style this was on the pavement outside the unit, couldn't even do it in front of people who could have given me some words of wisdom!

I was told about treatment steroids first, short term ended up long term but my heart this wasn't good for me I knew it. I was told about so many medications over that year, I stayed relatively stable which was lucky really. I remember I got up one day if knew my high heel days were over and I bagged every single one of them up I had about 60 pairs, I put gem in a black bag I went down to the shoe bank and throw them in each show while crying my eyes out it was hurting me my life was crumbling.

What was this rheumatoid arthritis, why had it picked on me I was 24 for goodness sake

My next three years went last with hospital appointments, medication, physiotherapy life changing at a pace I wasn't sure about. Then in 2011 I turned 26 and I was no better in fact I was getting worse how was this fair, I was battling and loosing an eating problem, I eventually got help and my weight stabilised so I though way hay I've beaten it! Wrong. In October 2011 I decided to start writing this blog about having rheumatoid and how it changed me how life changed I mean the ups and downs.

2011 saw three years since official diagnoises from the consultant and life had changed so much, I was weaker mentally and physically yet I didn't know my biggest battles was yet to come.

2012 arrived and I meet new friends hurray and I had started interacting with people with rheumatoid more, in truth I still didn't understand what it really meant I mean come on I was 27 I didn't want this disease. I had started flirting with a wheelchair as my body was tired and I couldn't walk too far, highlighted by a 90 year old asking me if I wanted to use her wheelchair when I went to vote in the general election! I obviously refused! 

In truth I knew the wheelchair was part of me now even if I would literally rather crawl than use a wheelchair which did me no good, my poor knees! I got a new consultant at city hospital Birmingham in 2012 which was a good move for me in some ways. I trusted him. He confirmed again 3 years on I defiantly had rheumatoid after more blood tests and general the look of my joints, I had this disease.

Now as I was now in a wheelchair I didn't want Togo out I was ASHAMED I was DEVASTATED my life plan, my independence  all gone how could this be happening to me? This was not fair 

I tried the dreaded methrotrexate this year oh how I'll it made me feel, sick, hallucinating, shacking, sweating, I couldn't eat the very smell of food made me vomit it was not a nice experience, but then it wouldn't would it, it's a type of chemotherapy, it was never going to be nice was it?

After I had not agreed with MTX we talked about biological treatment and lets face it that didn't end well either, that's life eh? So 2013 got off to a bad start.

But I had life by the balls and I was not going to let this rheumatoid get me, I enjoyed holidays with family and friends, flew on my own, formed stronger friendships, I could best this right? WRONG you can not beat this you can control it but not beat it, not something I liked to hear but it's the truth!

I was still writing my blog, giving people an insight into life with rheumatoid the struggles with the daily, hourly, minute pain, the depression, the fatigue, the insomnia and everything else that comes with the rheumatoid, it's not just rheumatoid you see it's everything else associated to it. The effects it has on family and friends a like, friends I miss and wish for one minute would just come back into my life. Friends I've lost because of rheumatoid, friends who have backed away, rheumatoid you see it's a knobhead!! 

2014 I turned 29 and I still had rheumatoid and a wheelchair to contend with but I did what I had todo to keep going with life and it was getting harder and harder and more isolating in many respects.

I got flu in 2014 and suddenly I realised that rheumatoid was a totally bitch, I mean I was in bed for over a week, it just wouldn't go, my joints were hurting, I was tired, I was sneezing I felt so poorly just from a bit of flu that normally would not have taken me down for 10 days, you see rheumatoid it does that!

2014 saw me spend a lot of time in Manchester a city I love, an old friend I guess, a city that allows me to live and feel alive. 2014 saw a return to away days at football for me, hurray, Good times! I fort like a trooper in 2014 I had so many hospital appointments I got back on my feet briefly even took steps in the water! I made progress with my hands, this were looking good, I was biting back! Hey rheumatoid I'm over here I'm coming for you! 

2015 I turned 30 earlier this year, hurray and I went AWOL from my doctors, sorry!! I went and had fun, Dublin, Manchester, football! I was not letting rheumatoid stop me celebrating turning 30, I had worked hard to get to 30, I've been fighting for 30 years hell was rheumatoid going to stop me!! 

Unfortunately as I write this in may 2015, rheumatoid has bitten back! I'm in a lot of pain, reliant on my painkillers, not so long ago for the first time ever in my fight a friend saw me literally cry out in pain, it broke my heart in to tiny bits. Things are not good, my knees are worse, my hands are worse, well back to wear they started. I am considering giving the methrotrexate (chemotherapy) another go to try and get mr rheumatoid (knobhead) back in to it's box, so I can carry on seeing friends, going to football and not be worried about the pain I'm in, because trust me it hurts just to write all this I have tears in my eyes, my shoulders and hands are hurting so bad, but if had to get this out.

I mean I'm not going to give in to rheumatoid, it doesn't deserve it, I mean it picked a fight with the wrong girl, but it's hurting me emotionally and physically right now. 

So you see my rheumatoid battle has been a long fight and had many ups and downs but it hasn't won not yet, it may win in the end though because you can not fight for ever. Fighting alone is hard, heartbreaking and lonely, but it keep fighting you rheumatoid, but I'd just love a break to go find my happiness my soul mate, surely he's out there somewhere.

Rheumatoid arthritis a disease that attacks your JOINTS, ORGANS and does not give up the fight again you.

Thank you to all my medical team and others who have stuck by me on this long frustrating battle.

Thanks to my family for the good times!

Thanks to those friends who have STUCK by me 

V xxx


  1. Excellent piece Vicky. You are strong enough to fight and win xxx

  2. Vicky what a poignant blog and so many of us can relate to what you have written darling. If its not one thing with it it is another isn't it darling. You keep fighting darling.I am proud of you.xxxxx