Sunday, 13 April 2014

My first trip to Manchester in 2014!

Early January I got a text from mufc saying congratulations you have tickets for the capital one cup v Sunderland! Hurray!

So I rang my friend mark, booked the hotel and we was ready! I met mark at Piccadilly as always me from my Birmingham train and him from his Yorkshire train. We got into a taxi off to the hotel. Unfortunately our room wasn't ready so we left our luggage and went into Manchester. We visited the football museum which was good to visit and I really enjoyed it, although the lift wasn't for me!!

The hotel rang to say the room was ready so off we went back. It was marks first visit to the Lowry and I think he enjoyed it! We chilled out for a bit before getting some food, you crnt best room service it's super yummy! We then got ready for the game, now as I'm use to winter games I wrapped up warm but I forgot my blanket yet again!

The game was one I won't forget in a hurray, it went to extra time with a late strike from Chica then penalties. Unfortunately united lost and we then had to leg it for a taxi back to hotel! We wasn't very happy but at least a friendly taxi driver!

Over all a fantastic time in Manchester and it's always lovely to catch up with my friend and my football companion, here's to more games :)


Friday, 11 April 2014

Garys kilimanjaro climb

Life is a journey....
In October 2013 I decided to "get fit" I was fast approaching 50 and I'd recently seen a video on Youtube of Dr Arvind Kaul, consultant rheumatologist at the Royal Free Hospital, London giving a lecture on Psoriatic Arthritis & Psoriasis.
This clip was forwarded to me by a friend; it had quite a chilling effect on her, and it certainly made me thing. It highlighted the fact that this Arthritis is an Autoimmune  Disease and as such is "systemic" in nature, i.e. it just doesn't affect the joint, but it also affects the bowel and the Cardiovascular System as well.
Autoimmune Diseases, like Psoriatic Arthritis, Lupus, Rheumatoid Arthritis, Crohn's Disease, does shorten the life expectancy of someone who's affected by one of these diseases, not that they occur in one's, myself I have three of these diseases, Psoriasis, Psoriatic Arthritis and Vitiligo, although I suspect I may have more!
Most of my life I've been overweight, and I'd be the first to admit it. Roughly three years ago, I had an appointment with my Rheumatologist, and the usual weight and blood pressure checks were done before seeing the consultant. Once in with the consultant she had a go at me over my weight! "Your one hundred and eight kilos!", my thoughts were: "Your point being?"
I'm used to working in "old money", pounds, shillings and pence, I don't do this fancy metric stuff, give me an Acre before 0.4046 hectares any day of the week; so I worked out how much 108kg really was..... and it came as a bit of a shock, 17 stone!
Gazza needs to go on a diet!
Through healthy eating, mainly slimming world foods and diet, my weight gradually came down, until I got stuck at 14 stone, I decided to undertake some exercise.
I already take my dogs out for around a mile for both their morning and evening walks; but I thought I really need to "up" my game.  I gradually increased this to walking to three miles, which roughly take an hour to do on pavements on the flat. It was a step in the right direction...
During the rather nice summer of 2013, my wife and I decided to go to Brecon for  a day out, nice sleepy market town in Powys, Mid-Wales. The usual way of going to Brecon is to take the A465, up the Neath Valley, turn left at Hirwaun, join the A4059 through Penderyn and eventually joining up with the A470, the main North South road in Wales; shortly after joining the A470 you come across a mountain called Pen-y-fan, which is the highest peak in the Southern half of the United Kingdom, it stands at 886 metres.
We pulled into the car park, just south of Storey Arms, which is now a Youth Hostel run by Cardiff Council, it used to be a Coaching Inn in days gone by. Both my wife and I attempted to climb up Pen-y-fan, turned out to be a bit of a none-event, we only managed to get around a third of the way up, before turning back. This mountain wasn't going to be easy.
The weeks that followed, I decided to up my walking by doing a hill near me, this being Neath Road. It took me around 25 minutes to complete this hill first time, a trip of around half a mile, and climbing roughly 100 metres, once I managed this a few times I then started to walk into the forestry,  and up a steep track there, nick-named "Cardiac Ridge" by the local fitness instructors and participants of Nordic Walking. I started trying this, and although out of puff, I did manage to do it, I was starting to get fit, the height of this hill above sea level is around 340 metres or roughly 1,000 ft  the walk to "cardiac ridge" is around 3¼ mile (5km) round trip with an ascent of something like 600 feet (180 metres).
At the end of October 2013 I went to see my GP, informed him that I'd like one of them gym passes that he could prescribe with a view to improving my general fitness and shift my weight loss below that 14 stone that I'd been stuck on! So in addition to having long walks, I was now attending the Gym three times a week.
October & November 2013 were nice months, not too much rain, very little in fact and wasn't too cold either, one Sunday morning, I decided I'd make a second attempt at climbing Pen-y-fan; so I set out at 7:10 am for the 50 minute journey to the car park on the A470 just south of Storey Arms, I was in the car park at 8:00 am and soon on the Beacon's Way, up to the summit. I pushed myself hard, perhaps too hard, I could feel my blood pulsing in my ears! It took me over an hour to reach the summit that day, then roughly 50 minutes to come down the same way I went up. I was home by 11:00 am that Sunday morning, I was greeted by my wife saying "You are back early, didn't you make it up?" "Oh, yes I did" was my reply.
The following weekend I tried Pen-y-fan again, this time it was easier.
I'm now climbing up Pen-y-fan every other weekend, and I've now started climbing it twice, ascending using the Beacon's Way path, walking over to the Corn Du peak then descending via the path leading to the Storey Arms, a round journey of some 4 miles, and a climb of around 1,500 feet.
In addition to "getting fit" and the weight loss, there have been other noticeable improvements in my health, namely my Blood Pressure and Heart Rate, about a month ago I took my BP and pulse, my BP was 126/67 and my resting pulse was a mere 48 bpm!
Here are some photos I've taken on my climbs of Pen-y-fan. In some of the photos I took you can see snow on the ground, on some days the wind-chill took the temperature down to around -10ºC (14ºF); you may appreciate how hard this mountain can be, in fact, it's used by the Special Air Service as their training ground.

And what next? Well in August this year, I'm looking to climb Mount Kilimanjaro for Arthritis Care, I'd be grateful if you would sponsor me, via my "JustGiving" page below, Thank You!

Tuesday, 8 April 2014

Having a friend with rheumatoid arthritis

My prospective as a friend of a rhuematoid arthritis sufferer

In 2012 i became friends with a rheumatoid arthritis sufferer and it opened my eyes, because up until that point i had only heard a little bit about this terrible condition. It takes over your whole life and does its best to control what you do and dont do .
My experiences of being a friend of a RA sufferer are varied i have heard daily stories of unimaginable pain and ive heard screams of pain close up, and it brought me to tears hearing which makes me feel guilty as im not the one in pain, but its so hard to hear someone you care about in that much pain, but it's no where near as hard as actually being the one who suffers from it, as a friend i feel powerless because all i can do is be there with empathy and words of comfort.

By Mark

Getting a diagnoises of PSA by Gary

I can quite vividly remember the day I fractured my left elbow when I was 4½ years old; I'd just started school, when I caught a cold, my father, who was a shift worker, decided to take me to a park, to get me out of the house, which had a children's play area.. 4½ year olds being what they are, I was climbing up the wrong way on a slide, fell off and that's how I fractured my elbow.

Some 24 years later, at the age of 28, I started having aches and pains in my left elbow, which wasn't much of a surprise since, after a fracture of a joint, osteoarthritis can be expected some 10 years later; following an X-ray, it was confirmed that I had "arthritis" in my elbow.

During my late teens, I developed duodenal ulcers (something I inherited from my father), I ended up going back and fore to my then GPs surgery. Due to a lack of care, I ended up making multiple visits to this surgery in Port Talbot, much to the annoyance of the Doctors Receptionist.

When I was 32/33 I started developing pains in my hips and knees, which was annoying to say the least, the only thing offered to me was paracetamol; around the same time I starting getting pitted nails, which is a classic sign of psoriasis. However, I didn't have a rash anywhere! The pain continued and I gradually had one or two X-rays, at the same time I continued having problems with my stomach, so continued with the anti-ulcer tablets in the forms of Tagamet, Zantac and finally Lansoprazol.

Life continues, no nearer to a diagnoses beyond "Arthritis" ; at the age of 38 I started having issues with a rash on my scalp and the top of the crack of my butt. Went along to see my GP and was given some cream to go home with, very nice of him. The rash waxed and waned and a few more trips to Doctor fuckwit without a diagnosis.

Some 3½ years on, the rash was still waxing and waning, I was with my Brother-in-Law one day and the rash was particularly bad, so since he had psoriasis himself I asked him: "Hey Mark, what do you think this is on my Swede?" the answer came back "Psoriasis" Armed with this new diagnosis from a Greengrocer I decided to go back to Doctor fuckwit: "I've still got this rash on my scalp, could it be Psoriasis?" To which Doctor Fuckwit replies "I'm not sure what it is, but it's definitely not Psoriasis"

A few months later, without a diagnosis from the mediquacks what the rash was, and particularly bad "dandruff" on my shoulder due to the rash. I went one Monday morning, circa 7:30 to be the first one in the queue to see on of Dr Fuckwits minions, with a view to getting to see a Dermatologist. I went in and seen one of the Partners, explained the situation that after 3½ years I hadn't had a diagnosis of the rash; I was promised that he's write a letter to a dermatologist. Two months later I phoned the local hospital, to see where I was on the waiting list, only to find out that I wasn't, the Doctor in the surgery hadn't written to anyone!

At the time I was working for the NHS in an open planned office, full of NHS professionals, I phoned the GPs Surgery to ask what went wrong, a plea of ignorance was given! I then phoned the hospital back and got an appointment with a consultant on a dinnertime for £50 in a few days time..... sounds ideal, however the fly in the ointment was that I required a letter from my GP, when the consultant told me this, I remember saying "Your fucking Joking!" I then called the GPs Surgery back and asked for a letter to see this particular consultant; phoned back to see if the letter had been done, it had, but to a different Consultant! If there was a competition for incompetence, this guy would come second! I blew my top, I think everyone in the open planned office heard the conversation that day.

I eventually got to see a Nurse Practitioner (Dermy), nice woman, totally different ballgame with this professional; she took a look at the rash and diagnosed "Psoriasis" after calling in the Consultant to confirm her diagnosis "I knew it was psoriasis" said the Nurse Practitioner "just from the areas affected in the letter!" So, the question went through my mind, why didn't the GPs in Doctor Fuckwits surgery?

I think anyone with health issues, who has access to the internet decides to plug in a few symptoms or disorders into Google; I was no exception, so I plugged in "psoriasis" and "arthritis" and behold by the power of Google there was page after page on "Psoriatic Arthritis"

Armed with this knowledge, off to see Doctor Fuckwit, "I've recently been diagnosed with Psoriasis on my scalp! I've googled this and arthritis and I've come up with 'psoriatic arthritis', can I see a Rheumatologist please?" to which Doctor Fuckwit replies, "Well, we don't know it's that, but if it is, I can deal with it!"
I returned back to see the Dermy Nurse, explained that I've been having issues with pains in my knees, hips and left elbow and I've done a google search and see that there's something called Psoriatic Arthritis. To which the Dermy Nurse replies, "Do you want me to refer you onto a Rheumatologist? I can do that for you, no problem."  What a Eureka moment!

Got to see a Rheumatologist within a few months, thorough examination, and the promise of another appointment in six months time. The next Rheumy appointment came around , discussion with the Rheumy resulted in a comment that "it's likely that you've got psoriatic arthritis" and was handed a leaflet on Methotrexate, I was then told to read this leaflet, and we'll think of putting you on this if you want to go on it. So some 15 years after first having joint pain at the age of 28, I had a diagnosis, and getting on a specific medication for the type of arthritis I was affected by!

Methotrexate has made a real change to my life, a life where previously I was in chronic pain, and walking like an "old man" in my early 40s, to someone who is pretty much pain free. However, about a year after I started taking this drug, I contracted Chickenpox at the tender age of 43. One of the downsides of being on this drug, is that your immunity system is so suppressed you are prone to contracting any bugs that are around.  To this day, I'm still on Methotrexate, and fortunately, it's still working well, however I am on a higher dose than what I started with, and having blood tests on a 12 weekly basis, but my life is largely pain free!


Open week

A short blog tonight just to explain a few things:

over the next week you will see posts by others i will of course say who they are by. To give people an insight into living with CHD, RA and other life long conditions, i hope it will raise some awareness. You may alsop see posts from people who are in the lives of suffers so you get an extra view. I hope you enoy these stories.


Saturday, 5 April 2014

The past six LONG years

Its been a very long journey to now, 6 lond years, of pain, heartach, suffering and loss. Now im not talking about "loss" just about my wonderful mum but also the loss of my former self, of my independance of my mobility, its been a tough ride. But i believe that now im fighting BACK!!!

Now this fight back wouldnt be possible with out my medical team, Lynn, Prof buckley, Alison, Prof Deansfield, Fiona, Julie, June and my doctors at the surgery paricularly Dr southall, dr leci, dr pryke and Dr law .. wothout all these people i dont know where id be.

So firstly i STOOD up yup on my own 2 legs my strength is regaining which is so fantastic there is still hope, my knee still has give the fight is not yet to get me on my own two feet, i wanna be dancing with pals again!!

But you know i am eternally thankful to my team and i always will be because they have kept faith in me and kept with me through some of the darkest days of my life.

My family, without them by my side it would have not been possible, my lovely cousins my aunties, uncles, my brother for coming out with his big sister and of course my dad. But although the girls are only young they have kept me going when ive needed a smile or when ive needed a reason to keep fighting i just looked at therw faces and it gave me that kick ive needed to keep going.

Then we reach probably the most important people My friends now i am probably going to go on a bit here so i really do apologise in advance.

Firstly i want to mention my CHD community, thank you for being there for me, through the tough times through the scares thought the unknown, to learning more about TOF after my mum passed away you were there for me i thank each and every one of you from the bottom of my heart. When i see us adult CHD's keep going and i see you getting married, having babies, achieving dreams, supporting each other it makes me smile knowing you all such good people xx

My Rheumatoid community the last 6 years have been totally mad for me but uve been there through thick and thin cheering me on showing your love and support an arm around my shoulder, knowing ur there has helped me over come so very much. Watching you all adapt at different ratws to rheumatoid makes me proud to know you all youve acvhieved so much. We are a crazy lot (i mean this in the nicest way!) but we have fun we laugh we joke but above all we are there for each other to cry on each other shoulders, to celebrate the milestones even if its a snall and igsignificate we know how significate it is to US. I am so proud of you all and love you guys loads xxx

Now we move to some SPECIAL mentuions from my life,grab a tissue you might need it!!!

Firsty up KATY, the past six years have been tough for us both but we are still here smiling and even buying clothes! I am so proud of you for everything youve achieved and everything youve been through your still smiling and going i know its hard but im always here for you. Your wee man is such a credit to you. We meet in 2004 in A2 Law whos have though 10 years on we'd still be friends and id writting about you in my blog! Whod have thought id even have a blog!! Thank you from the bottom of my heart for sticking with me through the good and the bad times, i know it crnt have been easy seeingf you friend going from walking and off on her travels every week to in a wheelchair but youve stuck by me and i thank you so much your a true friend xxxxx

CLAIRE, wow can you believe its been 6 years since we met? i still remember that conversation so whats wrong with you, i got chd and you had CD and i was like ah and thats been us ever since! We have had some fantastic times together, laughs and everything else! Lol shopping too! you could have walked away when i got worse in the early years of rheumatoid and eventually ending up in the wheelchair buy you didnt you stuck by me and we have still had lots of laughs! LOL snow and olly still makes me chuckle!! Thank you from the bottom of my heart for always been there day or night, good and bad, walking and wheelchair and we both saw the olympics we said we would back in the planning stage! What am amazing adventure we have been on thanks again for being such a true friend xxxx

Joanna, we meet because of rheumatoid and im so glad we meet because uve have truely been there for me through some good and bad times and uve kicked me up the ass when ive needed it, uve positivly kicked my teams ass too, your a legend mate. Thank you for pushing me through France and showing me such a good time and introducing me to french cheese and wine haha!! I was and still am so proud of you for climbing killi you are such a brave women and you inspire me every day to keep going and fight my demons. Thank you for being a true friend xxx

Sam, what can i say about me and you!! Its been a long and exciting journey! We met back in 2002 12 years ago! We have been through so much, good and bad times, we always know just when we need each other, how to make each other smile in the bad times! i will never forget your face on the London eye it still makes me chuckle! Or the time a guy in London a statue was slapping people and u said if he touches my bum im sat here laughing at the very thought. I know its not been easy for you seeing me go through the last 6 years in particular but uve been there i can not express just how much i appreciate the fact uve stuck by my side, your my longest friend and ill always luv you and think of you as my bestie, even if you do support Arsenal!!! Thanks for everything xxxx

I can not physically name all my female friends but please know i love you all and appreciate you sticking by me in the good and bad times, i mentioned the four above for speical reasons, i mean after 12 and 10 years they do deserve a special mentione lol.

Now on the the boys!! Oh man this is going to be hard so many diamonds in my heart!!! Here goes!!!

Mark, here goes! We met on twitter of all places!! We have known each other a while now and guess what we met over, a manchester united shirt! We both shared a picture of our new white shirts and that was in we havnt not talked since!! We have laughed, cried, had arguments about manchester united and birmingham city together! My fav memory of me and you was going to Old Trafford i was so pleased i could take you and make you dream come true it warmed my heart, even though i have the wheelchair you pushed and didnt moan! You have stuck by me through the good times amd the bad times weve had a lot of laughs and uve really helped me when ive had no one else to talk to you were there like a true friend. Im well excited for your first gig in May, i hope we have many more good times together, your a true friend and never forget im here for you xxx

Duncan, what can i say? the last two years have been a rollercoaster, we have laughed, weve cried, weve celebrated weve cursed too!! We have had some fantastic times! me gettuing you on a walk round the grove in 30c heat lol you didnt moan though and i supplied the drink and ice cream! we have talked for hours weve sent millions of texts lol. we danced in manchester and we both got drunk. But through out everything we have always been there for each other through everything stood side by side, always got each others back. i know you know that i will always be here for you no matter how im feeling. I know i can always ring you/. text you just for a chat. We just clicked 2 years ago clearly cuz we are both awesome! Thank you in all seriousness for being there through the good and the bad times, and heres to some more adventures in Manchester!! Your a true friend and ill always be here for you and i know your always there for me xxx

Mike, short and sweet you are an absolute legend, you make me laughm you cheer me up and you make me smile. we have talked loads and i just wanted to thank you for alwsys being there, You umnderstand me on a level others dont and i thank you for that. Thank you for sticking by me. Im always here for you mile always never forget that. xxx

There are so MANY other people i should and could mention but my hands are hurting and my eyes are red from crying. You know who you are if you not mentioned by name i thank you from the bottom of my heart i thank you for your friendship for stticking by me.

For now im signing the last word can only go to a few people Sam thanka for puttinf up with me for the past 12 years its been eventful lol! Katy rememeber keep smiling things can only get better, claire lets have more fun. Mark thanks for being you, duncan always here for you forever and mike lets keep smiling :) xxx

love to you all xxxxxxxx

Its been a while!!!

Well i havnt blogged since Feb but ive just seen ive reached 10,500 readers WOW thank you so much for staying with me ad my blog its been a long journey!

So whats happened since i last blogged .. well major event i turned 29!! To think i started this blog when i was 26 wow so much has happened in that time its been fun sharing it with you all, i kind of find my blog theroputic, i know sounds a bit crazy but it does.

For mty 29th i had a great day out with my cousin uncle and the girls at Thomas land had such a laugh and loved seeing the girls so excited about the rides it was lovely, then out for food and drinks in the evening which was nice. I was worried id be srtuck on my own but i wasnt and that was great.

The other major event since i last blogged is MANCHESTER!!

Well that was a mad one!! I went to the maximo park gig with friends. We laughed listened to great music had a wonder round town, i even got talking to a nice guy in a pub! i got a bit drunk lol but thats ok cuz i had a great time! Was lovely to spend time with duncan and have a chat!

i can not wait to go back to manchester!! Loads comimg up im off to the sunshine concert in London with my cousin and seeing mcbusted with a friend then back to manchester for a bank holiday mash up with Mark, Duncan, Eric and Duncan's friend Toni. Really looking forward to throwing down my hair and dancing and drinking lots of vodka oh and seeing the bands going to be a good one!!