Sunday, 17 May 2015

Just imagine

Take a step into this world, the world of rheumatoid,

You've been up most of the night because pain is had, every time you turn over you know it's going to hurt, the shoulder joint pained under the strain of you lay on your side, your hips pained of you lye on your back, you have no choice but to keep moving despite the pain.

The alarm goes for your morning meds, but you crnt switch it off because your arms are stuck and if u do stretch your going to cry because it hurts so bad, you hear the crunch in your shoulder joint when you take the plunge.

You look at the wheelchair, another day stuck in that, but worse you've got to get in it first. Your feet are swollen, your knees painful. U struggle to get up, the only way is to use your stomach muscles, causing your stomach to retract the more you do it. Your up and now your hips are hurting, struggling to get the quilt off because it's round you from moving do much, oh the tears start to flow, your not even out of bed.

You manage to swing around, you have to reach for the wheelchair, ouch this should not hurt, why me? Next to move the pillow the cat sleeps on, my princess. My energy is draining by the minute it hurts so bad.

Stretch to the wheelchair stick hope and pray you strength can pull you up, tears running down your face because of pain you arm is feeling dislocated, your knee is in pain from the stress of getting up, life shouldn't be like this? 

Meds , how can taking 1 inhaler be so hard? How can bursting a foil be so hard but it is because your hands are still fists, life shouldn't be this hard? 

Crying trying to get dressed, feel like giving up and I still have to take a medication and worse still get my shoes on ... The biggest challenge getting in and out the car .. 

Life should not be this hard

Friday, 15 May 2015

Season 2014/2015 my wheelchair and me!

Now I am not claiming to be a super fan or even someone who has traveled to every single game. However I am a manual wheelchair user and I wanted to share my season 14/15 with you as we head to the last 2 weekends of games.

Now firstly I want to thank a few people, firstly MUDSA for organising the wheelchair tickets for both home and away games, top job! Secondly to my friends, Shaun, dan, andy, Duncan, Peter and Martin as without you guys I wouldn't have been able to follow my team this season, luv you guys!! Thirdly to the staff at OT as they always ensure we have a great time!  Thanks to, Southampton, stoke, Cambridge, Newcastle, Liverpool, Chelsea and Everton stewards for ensuring a mainly good experience! Final thanks goes to the lovely MUDSA members I've met this season, thanks for the chats and laughs :)

Now I've been attending home matches for a while. However this season I decided to take the plunge to away days my first in a wheelchair. I will openly admit I was apprehensive! But in true vicky style I grabbed it and went with it! 

So we hit the end of June/start of July and I'm sat at home writing out my envelops ready to send off to MUDSA! Then my dad went off to post my big envelope and I could just wait and see , my home applications are made online! So here it goes, season 2014-2015

My first game was actually a friendly in August 2014! My friend Shaun picked me up from mine for the 200 mile round trip! We had a great time, my memory of this game is a bit scratchy, it seems so long ago now! 

My next game was Southampton away. What a day that was! Due to a sickness bug I ended up traveling down to the south coast alone, hoping someone would get me off the train!! I met carol from my arthritis group who kindly took me to her house after a trip around my old uni town. We had a good chat and then rang st Mary's who said I could attend on my own, thank you Southampton fc! I was dropped off and at first they wouldn't let me in but I was adamant I was going in! Lucky for me the stewards could see I was a responsible person and knew I'd be ok! So a wave to carol see you in a few hours as she had plans and off I went to see the team win!! I shall never forget this game for 2 reasons, as we scored the second goal and our fans went forward so did my wheelchair ..  Oh and the high 5s from fellow reds! Hello advertising bored! For the second reason it was my first away day in a wheelchair and on my own too!! After the match I meet back up with carol and we chatted til the early hours! Next day was an early start home, a good trip and 267 round trip for me!

My next trip was at old Trafford Boxing Day with my friend Shaun, we were lucky enough to have been invited into a box! It was a fanatic experience, well bar the fact I watched the game on the TV as no wheelchair access outside, least i had wine and a big tv .. Not a good mix with a migraine! A stop over in Manchester and then home and another 200 miles clocked up!

My next trip was stoke away on New Year's Day! It was a cold day, I think I had quite a few layers on that day! My friend can accompanied me to the game! The trip there via train was fine, but then we were on buses to the Britannia which was fun, mind getting back on after the match was even more fun! Thanks to dan, mufc fans who helped me get on the bus! A round trip of 108 miles in one day, for the love of football! 

My next trip came in the FA cup. I headed down to Cambridge and first there was train issues and I was worried I wouldn't make it! Then I found myself and my wheelchair plonked in the aisle with no designated wheelchair space! Random convos with people and hoping I didn't run anyone's toes over as my breaks are a bit iffy! Eventually made it to Cambridge, saying bye to the train passengers I'd chatted too!! Oh what a relief, to meet andy outside and travel to the hotel! A quick change and then the push/walk up to the game, now it's not easy when the pavements are full of fans! But we made it, very happy to see the MUFC steward to get our tickets! The less said about my view the better! However I did chat to a few mufc fans who were stood by the wheelchair and a few high 5s and chats about my views! Then the long walk back to the hotel, we sat in the bar and had a drink and met two fellow reds, peter and Gordon! We chatted for ages and before I was asleep and andy was gone, as he had work the next day! Now the morning came, the staff at hotel were fab helping me! On to the train back home and another 230 mile round trip complete!

Next stop my favourite place, Old Trafford and seeing my good friend Duncan! Now you have to laugh we met up and had a beer and a glass of wine, best way to start a game! We made out way to old Trafford. Met up with andy to return his flag I'd taken home with me after Cambridge, sorry!! Then off we went in after chatting, Duncan's first trip to the disabled facilities at old Trafford! We made our way to our seats and chatted and made a predictions and well done Duncan, you won! Not sure if you were on the nose or very close! After the match the normal madness to get back into town, well we couldn't get a taxi! So Duncan ended up pushing me all the way from OT to town it took us 58 mins! Think he was knackered, thanks mate your a legend! Another 200 mile trip! I didn't even mention being left on a hill and having to pull my self up with my feet! I was knackered! On and a moany taxi driver to Piccadilly because my handles are loose, I'd worry more about me going back and forth in the back of your cab! 

Next stop Newcastle! Thankfully Andy offered to drive, thanks mate! A long trip, my knees were hurting but it was worth it! Getting to Newcastle we were told to go to the area to park car then told nope your down there! Eventually we found our spot and stopped! We had a walk/push around the stadium and a quick pit stop at subway! Now Newcastle provided a lift, good job really!! The view was fantastic, although I'd have preferred people not to keep knocking my wheelchair, felt a bit unsafe looking down!! Met a few reds, had a few chats! Scoring in the 89th min was a particular high, think I lost my self for a minute! Nothing better than exiting with happy united fans! Until your told it's safer for you to walk with the Newcastle fans .. Scarf tucked down a bit! A phone call from peter and we eventually made it to the hotel just outside Newcastle and they had out me on the 1st floor and no lifts, you have to laugh! Lucky they had a spare room on the ground floor, silly hotel! A fun trip and a 445 round trip!! 

Next stop was another FA cup game, we were playing arsenal! I attended this match with my childhood neighbour! Now once we had the wheelchair folded up in the back of his car, thanks dad for the instructions to Martin! We were on our way! Then we hit traffic lol! We made it in plenty of time! The result was disappointing shall we say, but we had a decent drive and Martin got to see the disabled facilities at old Trafford! After the match I got to catch up with peter and peter, or as I explained to Martin, Irish Peter and Scottish peter! We had a good chat and then off we all went our separate ways, with hand shakes, hugs and kisses! Then the traffic back home and diversions near home! Got home for 1am aprox and that's another 200 mile trip done! 

My next trip was Liverpool away, I'll be honest I was a little apprehensive everyone knows the rivalry between these clubs! Well today was a new experience a coach trip! Oh yes I went with peter and Gordon to Liverpool! First of all, the wheelchair was lifted on to the coach, thanks lads! Then I was picked up and plonked on my seat!! The trip wasn't too bad, getting off, peter re made the wheelchair, after it had been folded away behind us! Then I was picked up and passed along and eventually made it to my wheelchair hurray! Now we didn't know where we were going so found some nice stewards who directed us back to the home end .. We both thought the same yes! The stewards were lovely and very helpful and we had an enjoyable game, I met Kevin and had a lovely chat to him. We then were given the option to stay with our fans "for our safety" or carry on up to us! We stayed for a bit and peter got a cracking video of the away fans singing! Next stop the coach after leaving in twos! Picked up, put in my seat, wheelchair folded, peter went to have a fag and I was thinking of the victory and the sending off!! A very happy coach back! I missed my train back so had to speak to assistance to get me on a later train and before I knew it I was on my way back home and being squashed by luggage and nearly didn't get off the train, I just love the danger! Another 216 mile round trip!

Next stop Chelsea away with andy! One man, one lady and one wheelchair in Central London .. Lol!! I got a train to euston and met andy there! Now first we were told we couldn't use the underground at euston as it's not wheelchair accessible great, we had to walk to kings cross, I took andy the back way, much quieter! After much discussion and being told we had to get off at a station that wasn't even accessible we found a route! Hello lifts! We made it to earls court! Another stop off for food and drink! Then a pleasant mainly flat walk to Stamford bridge! Where we met up with Jon and his son and saw the team busses arrive! Then off we went into the ground, large toilets, thank you Chelsea! Undercover so no weather issues, hurray! And polite reds making sure we could see, hat ruck of positives! We chatted with Jon and Kevin and other members! Then after the match we walked back to earls court and eventually got on the train, to Waterloo and then had to take about 4 lifts to each level of the station and then back down again! Hurray we made it to the tube for the last leg to the 02!! A bit of a climb and hope for the best getting in the car as the arthritis was giving me a bit of jip! Another 232 mile round trip!

Everton away and as I write this my last game of the season! We decided to drive up to Everton, so an early start, I wasn't even ready when Martin arrived soon got my ass into gear! Then off we went to Liverpool, following some directions! After getting lost and finding GPS on the iPhone we made it to Goodison! We then found parking £5 lighter but a wheelchair space so all was good! We had a walk to the ground, let's say Liverpool streets are not good for the wheelchair! We met Jon and Kevin for a quick chat! Then on we went into the ground. Now the plus the stewards were lovely and very helpful. The negative, the toilet was really small! And the box we have to sit in was a bit tight! Oh and I couldn't see the ball on one side of the pitch who knew it slanted! After the match we managed to get back to the motorway quite quickly and not to much traffic! Although I did fall asleep sorry Martin! Another 230 mile round trip! 

In total this crazy footballing loving girl and her wheelchair has traveled 2,528 miles this season! As you can read it's been an adventure! I can not wait til August to start a new adventure, home and away PL, cups and Europe! 

Have a great summer reds!! 

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

Sunday, 3 May 2015

Update on the 92 football clubs!

Well I've been feeling a bit down the last couple of days so I decided to have a read back through my blog and saw my 50 things todo even through I'm in a wheelchair and I came across my "92 football clubs!" Well I've done a bit of it this season! So,e I didn't get pics of so I guess I'll have to take another trip!! Here goes on the up date!! 

Well obviously I have and will continue to go to old Trafford the home of Manchester United because it's my club!! 

I've been to St Mary's the home of Southampton! I didn't get a picture as I was on my own that night but It just means I'll have to go back!! 

I went to the Britannia stadium the home of stoke city fc!! With thanks to Dan on a cold New Year's Day! 

Next stop was the Abby stadium and the home of Cambridge united with andy! 

Next stop was st James park again with andy!

Next trip was Stamford bridgeoke of Chelsea  with andy! 

Next stop Anfield home of  Liverpool with peter and gordan! 

Then off to goodison park home of Everton with Martin

I also visited Ashton gate home of Bristol city again no pic but attended with Shaun! So I'll have to visit again!!

I also visited the aviva stadium in Ireland which isn't part of the 92 but an extra stadium! I visited with heather while on a trip to Dublin the home of Irish rugby and football!!

Friday, 1 May 2015

Olly murs and Everton away

What a weekend .. Is how I will start this blog!

It's not often I push myself to a point of exhaustion but this weekend I did because I got todo some of my favourite things, see olly murs, go to Manchester, spend time with the little people and my cousin and of course attend a football match!! 

So Friday I went to an appointment then I headed to my cousins house to meet her and my uncle! Then off we went to the train station! It was my little cousins first ever visit to Manchester and she told me how much she liked it when we got home! 

Upon arrival at the hotel we got some food and then we all started getting ready, make up, hair and dresses everywhere! Well I think 45 mins for 3 girls to get ready was pretty awesome!

Off we went to the Manchester arena for the olly concert! Now I have to admit I was excited partly because it was olly and partly because it was little lady 1s first ever concert! What can I say we had a fantastic time and did some seat dancing! After wards my friend came to meet us and we had a few drinks in the bar at the hotel before saying goodbye and retiring to sleep! 

Saturday came and we all had breakfast and little lady 1 said she had chocolate muffin for desert it did make me giggle but it did look tasty! Then off we went in to Manchester for some shopping and that was fantastic! We had lunch in town! Then back to the hotel and on to our train back home! Only to find out we had missed olly coming to see his fans! The lovely taxi man kindly sent us a pic of olly that he'd taken thanks taxi man Jon!

Home Saturday big I had more food and relaxed and had an early night! I had a busy day!

Sunday morning came and I was up really early 6am! Ready to go to Liverpool with Martin for Everton v Manchester United, the journey didn't feel too bad until we got lost in Liverpool and had a rather weird road that seemed Togo in about 4 directions!

The stadium was nice, the stewards had seats where the wheelchair users sat, too marks Everton! Although the toilet was a bit of a tight fit! Was nice to see some if my MUDSA pals again outside goodison park! 

We got to take some pics of players right up close, as they trained right by us as we were literally pitch side! Hurray! 

Unfortunately we lost and that always makes the trip home long didn't help I fell asleep, sorry Martin! I was dropped off at Carolyn's for our second night with olly and little lady 2! Now this was her first concert to so she was very excited! I got changed from my football clothes into my evening wear so I was a it more dressed up than just a hoodie! 

Little lady 2 had her ear defenders and she was dancing and singing to all the songs I think she had a fantastic time! As did me and Carolyn! 

The evening finished with me seeing my friend Lindsay briefly as little lady 2 had fallen asleep! And then sitting on a car park for an hour and me getting a little tearful and I was in pain because of the weekend I think! 

We eventually made it home and I said goodbye to my cousin and little lady 2 and came in with my dad and soon after I was asleep.

A really good weekend although very tiring 

Lots of hugs

V xx