Pain Is Weakness Leaving The Body

Brixton, London.

This is what I have been dreading for some time now! I only have myself to blame I suppose. My teeth have never been the best in toothdom! I was a lazy bastard when I was a boy! Hardly ever brushed my teeth! I do now of course, but I think it is too late. One of My chewing teeth cracked last night when I was eating something! It wasn't even something hard! The loose part of the tooth is still in there, but very loose! No pain......yet! When I bite on it, or it comes out, then I will feel it! Also that side of my mouth has seen a massive increase in usage over the last 3 or so months, due to the fact that my natural side for chewing food has been causing me plenty of pain! So I switched sides.
I will explain in a moment just why I think I hate dentists so much! But first I will just say that I went to the RFH today and was seen this afternoon. The dentist was all ready to carry out a temporary repair. I needed some Factor VIII to cover for any (which there will be plenty of) bleeding! But my Haemophilia Docs said that they wanted me to start a course of A/B's to prevent any infection. And come back tomorrow for the dentist. So I got my a/b's and have already started them, also got some Tranexamic Acid (Trans Atlantic Acid:) for the bleeding I will get! I ain't to pleased at all! I really need the work done, but I am not looking forward to all the blood and pain!

So, Why do I hate the dentist so much?

Well, really it has a lot to do with the experience I had right after I was told I had HIV! I remember going to the dentist, as I did regularly, and when I was sent into the chair, I was half expecting E.T. to run through the room! The last time I was in there, everyone looked like normal, everyday dental peeps. But that time everyone looked more like they were collecting samples from the crater of a volcano! Covered from head to foot in plastic clothing and visors, under which were saftey googles! The whole room was like a giant version of Laura Palmer from Twin Peaks!,,,,,,,,,,,,,,,Wrapped in plastic!
Anyway, Apart from all the earlier experiences of bleeding gums (profusely) after surgery etc, which took a few weeks to heal! And not even mentioning the pain too.........I was quite well & truly put off from ever going back by this visit!
I did begin to go back about 3 years ago however, all was ok but after more and more bleeding from just having them cleaned I was beginning to wish I had stayed away! Work would definitely need doing sometime in the near future, but I left it, then all of a sudden I was on Hep C treatment and just hoped that nothing would happen whilst on tx. But I have had some nasty pain the last 2-3 months on one side, which made me switch, which caused this new problem! I just want it over now and am willing to except any pain & bleeding! I just hope I don't get any infections! Hospitals are not the cleanest of places!

Having said all that, I am really looking forward to having good teeth again! Christmas seems like less of an Unknow Pleasure now.

Just finished my 1512th Ribavirin tablet & 9th bottle emptied! See what I mean about the number nine! Even the amount of tablets adds up!

Bring on the PAIN!!!!

Jason

Sunday, Sunny, Sunday!

View from Leith Hill, Yesterday

No more dreams this morning I'm afraid! Phew I hear you all cry;)

I did sleep well, as always. Another Sunday afternoon and another 3 hours of cycling. I did all three of the hills too. Holmbury, Pitch & Leith. I did cheat a little between Pitch & Leith. I thought I was finished as I met back with the car in Peaslake. But after some food, I packed the bike away and drove it to Coldharbour and did another hour on Leith Hill. My bike lights were in the boot and there was no excuse to go home. My arm hurt, but I new I was pretty close to the car.
My ankles felt pretty wonderful too. Comes and goes and is very unpredictable. Like on Friday just gone. I went for a hike around Box Hill and my ankle was feeling so weak and pathetic! I was having doubts as to wether I would be able to carry out this Ben Nevis hike next year! It's a long way to go and just sit at the foot of it and rub my ankle! I may have to have a back up plan. A weeks mountain biking up there is definitely going ahead. I will take my boots etc and just see what my feet are like.
I want to kayak to the Isle of White too. Lee and I want to go from Hurst Castle and paddle to The Needles. We have been there a few times kayaking, but not across to the White. It's not very far, but looks pretty dangerous! Either that or a paddle from Eastbourne to Seaford, under Beachy Head and The Seven Sisters. There are a whole load of lakes and coastal stuff we want to do in North Wales too. I am going to be pretty busy next year!
The weather was perfect too. Unlike last Sunday, when having reached back home, resembled something more akin to a giant turd! Gotta do it though! There was, as you can see, a wonderful sunset. I sat there watching it for a good half hour:) Gotta be done:)
Again I was all on my tod. Lee was sick with a cold or something. Actually, if he was well, we both would have done the kayaking at Lulworth. The weather there was perfect according to Metcheck. I don't go sea kayaking alone, as this seems a little daft to me. The sea needs to be respected at all times!
Being alone is fine as long as you don't mind isolation in those kinds of areas. Isolation & pain or isolation & worry etc don't go together! But isolation & cycling (or kayaking & hiking) do go together. Having said that, I think I would rather be with my buddy.
I quite often stop and chat with other mountain bikers and sometimes hikers out in the hills. But kayaking is more anti-social. You can paddle up the Thames for an hour or two and the most you get from another kayaker is a little nod.
Yesterday, right in the middle of Pitch Hill, surrounded by thick forests. I came to a little cross junction in the trail and I see a fellow biker standing over his bike having a drink. Instantly I recognize him from about three weeks ago.................I notice we are in exactly the same spot as before! We both laugh in slight amazment at the coincedence. What are the odds of that? I don't often cross paths with mountain bikers I have bumped into before. You are more likely to put your foot in the same little pile of dog poo you trod in 3 weeks back;)
So.....to today. Today is a lazy day going to Kingston town center to look around the shops. Put a prescription in for my pain killers. Get a pumpkin to cut up tomorrow at my little Sisters house. Her daughter Millie & Daisy & I do the faces thing every Halloween. I need to find some decent saw & tools for the job too.
I shall tell you all about it later:)

P.s. Switched to Beta at the weekend.

Jason

A Space Where A Child Should Be....

The Zig-Zag, Box Hill, Last Night

MMmm! It's interesting that the photo I took is the shape of the letter C no? I suppose it could also be a U too, or the bottom part of a J.........Either way it's me.

****Warning: This dream may upset some readers****

Yes....Friday morning I woke up around 5am. Dreams are often responsible for this in my life. Some may call them nightmares, but not me. I have had some pretty gruesome dreams, Sex, death, being able to fly, hiding, numbers, but I have been fascinated by all of them. I live to sleep & I sleep to dream & I dream to live!
I always look forward to my bedtime! I don't intentionally go to bed thinking, What will I dream tonight? They just happen.

Friday mornings was of seeming importance. It would have been over in minutes had it been in real time. But I saw a whole lot more!

"A Space Where A Child Should Be"

A long, narrow quiet road, sits in the middle of nowhere, soaked in boiling hot sunrays coming at a slight angle from the late afternoon sun!
Dead straight and as smooth as an airport runway. Parked cars intermittently line both sides, making the road even narrower. The sleeping policemen have been made redundant and have gone home. This road is about to see a little bit of excitement!

At one end of this road, there is a low brickwall running at a 90 degree angle from the pavement into a dry, dead area of grass. It is so hot, dry and sunburned, it is desperate to ignite and maybe cool down a little.
Along this wall, sat like little ornaments on the mantle piece belonging to a little old lady, are several young children. Legs swinging slightly, gently thudding their rubber heels on the hot brick of the wall they are perched on.
One is chewing gum, She is blowing bubbles and ends up with warm sticky gum all over her grimy, oily chin. Another is watching the bubble blowing with great interest, wishing he too could blow such impressive bubbles. Further down the line still, there are two young boys with spiky hair teaching each other to whistle by using their fingers. One is telling the other to put his fingers further into his mouth and close his lips tighter, only to be told; "I know what to do! Leave me alone!'
There is one more boy, sat all alone, roughly in the middle of the line of children. He has a can of coke. In his tiny little hands, the can looks massive! The ringpull has already been very expertly flicked away like a flying saucer into the curb. He has taken a few swigs of Coke and feels bloated almost immediately. He begins to feel sick and light headed! There is a plaster on his knee, dried black blood showing through the little pink oblong.

Half a mile away, right at the other end of the road, a car turns in, amidst the screeching of rubber! It is a white sports car. Maybe a Ford Capri. The windows are open all the way down, and the driver, a young man of about 17, is leaning forward trying to make the car go faster. The engine sounds powerful and rattles as he pushes the accelerator into the bottom of the car! His left arm clutching the gear stick is eager to move it to the next position. His right hand grips the steering wheel with great force. He looks forward, sneering at the speedo and the road ahead!
More rubber & second gear is reached. Then third, fourth! The parked cars wobble just slightly as his speeding car sucks them in! Each second that passes, the more speed he has gathered! He is almost halfway down the road now. Fast approaching the end that contains the small, innocent wall of children!

Sweat begins to trickle down the temples of the children. The heat is almost unbearable! But it is the Summer holidays and better than being at home, watching Mum peel potatoes, And Dad with his feet up, infront of the TV watching Snooker.
Bubbles are still being blown, spit is dripping from the bottom of two chins & gas is about to escape from one childs mouth!
The pavements are covered in little piles of pure white dog shit! Dry and perfectly shaped like used indoor fireworks.
One by one, they begin to hear the sound of the speeding car, fast approaching and determined not to slow down! And one by one, they begin to look up to see the car approach. They have been waiting for another car to come by. They like to see fast cars! It is very exciting for them.
Wet, saliva soaked fingers begin to dry into little salty pegs in the heat of the sun. Bubble gum is safely tucked into a warm cheek. A nearly full can of Coke takes a fall to the ground and bubbles spill out onto the scorched grass. Steam starts to rise gently from the gasping, cooling grass.
The car has reached maximum speed and is just a hundred yards away from the wall of kids.
Sweat also runs down the face of the young driver. Intent on his final destination. He ever so slightly turns the steering wheel to his left. Hardly noticeable, but enough to move the car off course and into the direction of the children!
Just where they are sat, there is a long gap of carless curb. They are now staring wide eyed and frozen with excitement at the fast approaching car. They don't understand what is happening. This is great fun and most certainly something to bragg about when they are back in school soon.
Then almost immediately the car mounts the pavement! One wheel, then another. Soon all four wheels are safely up on the path. The driver still looking right out at the way ahead & the innocent line of boys & girls!

The boy with the Coke is transfixed like all the others. His plaster has begun to leak as blood starts to pass through his hidden scab.

The car is heading right for him & him alone! The others are just inches away and still don't understand what is happening. The front bumper of the car is almost parallel with the Coke can boys knees!

The others watch innocently as the car smacks into the boy!

The wall is still the same as it was just seconds before. Except that there is now a six foot gap where the boy was! The air has been filled with the dark red spray of the boys blood! Tiny little particles are floating, swirling in the air like dust. Just part of the hot air now, it is sucked into the mouths of the other children! Specks of it land on their sweaty faces. The grass too has a thin spray of it beginning to cling to it's withered blades!

The car has all but disappeared. It has become a spot in the distance, trailed by two lines where the wheels locked the car to a standstill. It came to rest about 300 yards into the parched area of grass behind the wall, looking more like a child's toy. The drivers door opens and the driver climbs out and begins to sprint back towards the wall!

Back at the wall, the rest of the children slowly begin to realize what has happened! The fine mist of blood in the air has settled and covers the now rusty looking grass. They look at eachother, at the gap in the wall! There is just a space where a child should be, then back over their shoulders to the car. A long line of smashed bricks are spread, leading towards the car.

The driver is fast approaching the children! Sweating and breathing hard! One arm in front of the other, pumping, thrusting, legs trying to keep up with his adamant torso. He is wearing blue jeans and is topless. Body wet with sweat.

He reaches the children........They stay put and wonder what he wants.

After watching all this from......somewhere, I can see that this young man wants to put down the rest of the children!

The dry grassy area turns into a large open plan hall. The varnished wood floor has numerous children playing on it. Dancing, chasing & hiding. On the walls of the hall seem to be various tools and weapons, hung in place by nails! Most spaces have an outline painted in black where the weapon used to be. The shapes suggest these may have been axes, hammers, hand guns, knives & machine guns! There are a few still left hanging.
Amongst all these children is the driver of the car and me. We are chasing eachother between the children. He has a target painted across his wet back. I grab an axe from the wall and proceed to chase after him. Having seen the axe in my hands, he decides to run. I am close enough to strike down on him. But the axe keeps missing! Like two opposing magnets, the axe misses completely and burys itself into the wooden floor. My aim is perfect, my power magnificent, but I cannot seem to kill him!

Somewhere nearby, a small knife for peeling potatoes fall to the ground!

To sleep! Perchance to dream.........

Jason

36th injection & Clan de Fang

Water....clean.....fresh.....cold......wet......MMMmmmm!

Since last Sunday, when I was out up on Pitch Hill, I have been doing some interesting things. For me anyway.
On Monday, I was offered 3 tickets (thanks Naif) to see "Little Britain" Live at the Apollo in Hammersmith. I jumped at the chance:) I would've preferred "The Mighty Boosh" but Matt, David & the voice of Tom Baker was a very welcome night out! I don't go out much these days. I used to go to see live bands quite often, but the smoke became all too much in the end. I kept getting very bad ulcers on the side of my tongue the morning after & swollen glands......in my throat!
I took my friend Jac as she has the same sense of humour as me. She wasn't at work that day too, which was a bonus.
So.....Off we both went. We had a short amount of time to get from Teddington to Finchley Central, then back to Hammersmith. It was a good journey, as Jac & I really like to "People Watch".
Eventually we got to the venue, sat down.........30 seconds later Lou walked on with an Andy'less wheelchair! Perfect timing!
Andy appeared from up in the rafters on cables:)
Great fun! (by the way, the 3rd ticket did a good job of keeping me away from the rest of the audience;)

Tuesday I was subjected to numerous kamikaze Rabbits along the towpath by Hampton Court! They are hellbent on pushing me into the river I am certain!
Those red leaves I photographed the other week have taken a screaming leap (Monty Python style) to their imminent Autumnal deaths! There are a few browny/yellowy leaves left. Bloody things are scared of the landing;)

Wednesday evening I had a Lovely meal with my upstairs neighbours. They are such wonderful peeps:) Wonderful food too:)

Thursday was my "Clan de Fang" afternoon. I met up with Guy from the forum at his home in Putney. It is only 9 miles away from my flat. He took me out to a Lovely Persian tea shop and bought me lunch. Guy is a very charming man. He says that he is 48 years old! Never did a 48 year old man greet me at the door! He looks 10 years younger! Has a great sense of humour too. It was wonderful meeting someone from the forum. I also spoke to Guys girlfriend Minerva on the phone. As you all know, she too is a wonderful person. She has a very sweet sounding voice & a Lovely accent:) It seems the three of us are going to meet up soon, when Minerva is down from Scotland visiting Guy. I am looking forward to it:)
Then later, after a quick figure of 8 via Bushy Park, Kingston Bridge & Teddington Lock on my bike, I spoke to another member from the forum. Ivani had seen that I was a Star Wars fan and said that her Son Ryan too was a fan. So we spoke on the phone for a while. Ryan is 14 and certainly does know his Star Wars! He put me to shame!
Ivani has had a very colourful life over the years and despite having a tough time on tx, she is most certainly on the right tracks now. She too has a Lovely accent and is a very Lovely person. I will have to pop over to visit them someday. They are in Watford, where they seem to be quite happy now:)

Last night also saw me squirt my 36th Interferon injection into my side, rendering another Interferon box.......empty:) The 9th box to be precise. These numbers are numbers that make me feel very comfortable. My whole life seems to revolve around the way I breathe in germs & pollution, certain letters of the alphabet and what the "Numbers" are up to! 9 is a good number for me! It is a very reliable number and always comes back around to itself:) It was invented just for me!
So........Very lucky and forever thankful, I am side effect free! I only wish that I could share some of it with others!

Jason

P.s. I had a very vivid dream this morning and will post it later. I feel I have to write them out sometimes. I really do believe that they mean a lot to me! It is quite a graphic dream. I will add a warning at the start so don't worry!

Among the Millions of Needles, there was Life.....

Bushy Park, 9th Oct 2006

This post is a special entry & is the result of a thread on The Hep C Forum entitled "Member Introduction" recently posted by TeaStarWitch.

Firstly, let me apologize for the length, but I'm not one for keeping things brief. I like detail & I might get a bit carried away.

Be prepared to be bored to death!

It all began in the early hours of January 23rd 1971 in the maternity ward situated at "West Middlesex Hospital" in Isleworth, Middlesex, London, England. My Mum gave birth to me and my twin Sister Nicola. I was first to come out, Nicola 7 minutes later. We still to this day have a running joke, where I have gained an extra minute in age with every year that passes. I am 35 minutes older than Nicola at the moment;) The birth went well I think. They did think that Nicola was the Placenta at first though!
I was the only boy out of four kids my Mum had with my Dad. I also have a half brother Mark who is 43. I have a younger Sister (Tania), an older Sister (Samantha). All three of them have children. Samantha has two, one of which has Severe Haemophilia A (Samuel 13) & Lewis (2). Tania has two (Daisy 14 & Millie 3). Nicola has one (Evie 2). Nicola is also married to my best friend Lee (My mountain bike buddy) Whom I have know since 1981.
I was first diagnosed with Haemophilia when I was 2 years old. My Mum & Dad couldn't figure out why I was always crying and seemingly in lots of pain! They took me to a Doctors who said I had Haemophilia. My Mum & Dad were totally shocked with the news! Back in 73, there wasn't much information available. They soon got over it and realized that it wasn't so bad after all. As long as they looked after me well and stopped me from falling over at all costs. I was pretty much wrapped up in cotton wool. I was soon registered up at Hammersmith Hospital in London. There I received regular blood transfusions in the form of bags of human blood plasma. I didn't stay long at Hammersmith, as a result of the Doctors being totally useless! They didn't know much about Haemophilia and made me cry all the time, sticking needles into my arms and not being able to find a vein! I was soon (at my Dads request) transferred to The Haemophilia Center at the Royal Free Hospital, Hampstead, London in the mid 70's. Every time I had a bleed, which was nearly 2, 3, sometimes 4 times a week, an Ambulance had to be called, usually in the middle of the night, to take me to the hospital for blood transfusions. These were rather exciting trips actually. It took my mind off the pain no end, traveling through the streets of central London with the sirens blasting away on top of the ambulance! I was very young and still in my pyjamas, half asleep, clutching my elbow, wondering what the hell was going on. And sitting in the A&E dept waiting to be seen was an experience to behold! All sorts of people coming and going. Covered in blood, streaming down their faces, with a Policeman trying to keep them from doing anything silly! The coffee machine was nice, with orange squash for me and tea for my Mum or Dad. I do remember the beige floors in there being very dirty. I would stare at the floor, counting the ceiling lights in the grimy reflection, doing my best not to attract the attention of some blood soaked maniac sitting opposite me!
I missed quite a bit of school over the years, spending more time it seemed in hospitals & in bed at home watching children's television. You & Me was a favorite. Words & Pictures too was good.
Eventually, My Dad was taught how to inject me himself at home. We had home take away too (Factor VIII). These were by now made up of a bottle of dried human plasma with the much needed Factor VIII. Massive 60ml syringes, little bottles of sterilized water. Various transfer needles and blue butterfly needles for the vein. My Dad learned on an Orange. The Doctors said that an Orange was very similar to human skin! He was very good, I remember his giant fingers, covered in tobacco stains looking more like burned sausages than fingers! but I really wanted to do it myself! I was getting older and really needed to be more independent. I injected myself when I was about 9 years old. I have been doing it all my life now and I am an expert! I never missed my vein and my Mums friends were very impressed with my needlework:)
By now my right arm was looking thinner than my left due to the vast number of bleeds into my joints! It and both my ankles have always been my worst joints. I would hardly ever wear a t-shirt in summer, in case people saw my skinny arm. I don't give a toss these days though, but it is as skinny as it was all those years ago! Very weak and painful too!
I soon learned to live with the predictable comings and goings of my numerous bleeds. The older I got the more bleeds I would develop! After so many years of being wrapped in cotton wool, I soon liked the idea of becoming more and more active. I wasn't allowed to do P.E at school! Nor was I allowed to play Rugby, football or baseball! Instead I was made to run around the sports field, as this was said to be better on my joints. Personally, I think I got quite a bit of damage from these runs!
Everything changed when BMX bikes became popular in the late 70's early 80's. I was always falling off my bike, trying to do wheelies and bunny hops! More than once I would fall off onto the tarmac, having tried to do long wheelies, only to discover the palms of my hands and knees covered in blood! Didn't think anything of it! Always had dried blood on me somewhere!
Those were great days! My best! I got into cycling from then on in!
The next decade or so saw me doing more BMXing, mountain biking and writing my "Tag" all over the place! I was quite artistic and got into doing graffiti and Electro Hip-Hop music. Still having regular bleeds and treating myself, I was doing shit loads of mountain biking! Cycling all the way to Box Hill from Twickenham and back! I even cycled to Brighton once! Very boring indeed! I cycled from Eastbourne to Brighton too. Right over Beachy Head. I have photographs of me sitting with my legs dangling over the cliff edge. Heights don't bother me!
During my Graffiti days, I had left school and had started college. Graphic Design was my interest, I was very good at it and enjoyed it immensely! Then a few months later I was called up to the Royal Free and right out of the blue, was told I had HIV! I was sitting in this tiny room with no windows. A TV and video recorder in the corner of the room. And a little video camera high in one corner. "Do you mind if we record this?" They asked.
Of course I didn't think anything of it. I was sitting with my Mum, and two seasoned professionals in the medical world. I was 16 years old and had the rest of my life ahead of me. I was enjoying college, even had a girl in my class who was interested in me! I had never had a girlfriend before and the prospect of being with someone in that way was terrifying, but exciting too. I was and still am very very shy! It took me 3 months to say yes to her!
So there I was in that tiny, cold, very quiet room.
I didn't hear most of what was said. I very rarely took in much of anything my Doctors told me over the years. What I did hear though was; "Jason. You have HIV!" "And You have had it for the last three years!".

At this point in my life..........things went a little odd!

I didn't want to die, I didn't want to get ill, I didn't want to have to say good-bye to my family, standing around my hospital bed, crying their eye-balls out......snot dripping all over my skinny, AIDS riddled legs! And what about Christmas? It was September and I couldn't see the next Christmas! I couldn't wash my hands in the sink, because of the ad on the TV. My Mum, although she doesn't remember saying it now, had already killed and buried me in her sleep......so she didn't have to think about it.
I changed a bit too. I went out with that girl from college. We had a wonderful time "Bombing the Buses" with a whole bunch of other graffiti vandals. Sometimes 10 or more of us would jump onto the 281 to Hounslow and head upstairs.......Obliteration of the clean, light beige, smooth surface of the interior of the bus commenced. The glass in the windows too! As we walked back off the bus, to our next one, the bus we had left behind looked more like a long dark cave, ink fumes filling the air. We were high on both adrenalin and fumes.
Railway embankments in the middle of the night became another HIV hiding place. I had silver finger nails, which spread all the way up my right arm, all over my black "Goose" jacket sleeve. My eyes would often sting as the wind blew the tiny spray drops right into them. If you want real peace & quiet.........spend the afternoon walking along a railway line. One of the quietest places on earth....... Until a train comes along that is! Plenty of wildlife to be seen too.
Eventually, My new girlfriend (1st) & I were booted out of college for not going. We had forgotten about college. We were far to busy "Drawing" & "Staying in bed". We had a good time and as a person I was changing daily. Her Mum & Dad were none to pleased when they found out I had HIV. My girlfriend was fine with it. I had told her straight away.
Things went along at a steady pace, but eventually things came to an end. I had found another girlfriend Jac (2nd) and we got on like a house on fire. She was my younger Sisters school friend. This was back in 89. She already knew about my health problems, so I didn't have to tell her. Her Mum & Dad were fine too! The graffiti stopped and I did more mountain biking than ever. Plus we had so much in common too. Music, films, TV, sense of humour etc. We would go out driving in the middle of the night for hours, listening to "Suede" and "The Beatles". Spent a shit load of money (HIV compensation) on absolute crap, had nothing to show for it! It went very quickly because I was going to die soon (Or so I thought). But our relationship wasn't to be as I was very jealous and this jealousy ended our relationship in about 93. We are still friends today. Actually, Best friends:)
So, I was alone again. And it stayed that way until I met Claire (3rd & last) in August 2002.
The time between Jac & Claire, I just fell into a deep rut of waiting to die, mixed with cycling and hiking and nothing else! I was there, but at the same time, I wasn't. And those 9 or so years, were pretty........Well, nothing really. Nothing happened except I was told I had Hep C too around 95 or so. I had had it since the mid 70's they told me. More bad blood! Oh well I thought......& just tried to sweep it under the carpet. I more or less managed to do that, amongst so many more visits to the Royal Free. But they would keep saying I needed to think about treating the Hep C. Yeah! Yeah! I'd say. I'll think about it. Went I got home, I forgot about it. I was far too busy having met the girl of my dreams (Claire)! Eventually they basically told me to start at the beginning of this year!
Claire was a wonderful distraction and came right at the perfect time. I was ready for a new relationship. She was visiting her half Brother Lee (My best friend & Husband to my twin Sister). Lee & Claire have the same Dad. She was/is very beautiful and born in Van Nuys, LA. I was introduced to her and.....well, that was it! We fell in Love........BUT! She lived in the US and had to go back in a week. We did however manage to have a relationship. Writing letters, e-mail, phone and She would visit me for a few weeks here and there, and I would visit her for 3/4 weeks here and there. She came over to stay with me for 3 months in a row at one point........pure bliss.
It couldn't & didn't last though. She was at Uni and we decided to call it a day. We are still friends:)
So I started treatment for Hep C, got another load of compensation for the Hep C. Spent it a bit more wisely than the HIV dosh. Still have a bit left after just over two years. I spent a fair few quid going to visit Claire. She is such a wonderful person. Friendly, warm, highly intelligent, beautiful, funny and so cute & cuddly:)
Anyway........Treatment became my main focus, and I went into it head on, with absolutely no knowledge. I just thought, It can't be any worse than the time I took "Indinavir" for HIV back in 2000! And even that was something I just seemed to "Get on" with. And low & behold.........TX has been a breeze. Slowed me down a bit near the beginning. I stopped waiting for something bad to happen and concentrated on staying fit! Mountain biking all the time and kayaking, hiking. Lots of pain from my already damaged joints. But nothing new there.
I don't really know where I am headed now. The HIV has all but gone from my mind. The Hep C is my main concern now. I am sure that this will be the one to get me! It has already killed three of my Haemophiliac friends! They didn't look after themselves though! I did! Still do!

I suppose it has to end somewhere eh? Not very interesting I admit. But in a nutshell, with a very hard outer casing, That is..... my life!
I'm not sure if it's the kind of thing Tea wanted? But surely it's got to be better than; 35 yr old 5'10 white male, 72kgs, wicked sense of humour, greeny, browny, greyey eyes, Non-smoker, non-drinker, non-plonker, outdoors Loving, Artistic, warm, generous, friendly, quiet, noisy, shy, farty (windy type), fit, punctual, moody, gittish, piss taker, deep and Loving!.................With a few minor health problems too;)

Jason (The Mighty C)

Lazy Sunday Afternoon!

Barry Knows Best, Peaslake, Surrey, Today.

I know, I know! What the hell is Barry Knows Best I hear you asking! Ok.....It is the name of a length of single track going down the side of Holmbury Hill into Peaslake Village, Surrey.
I was up there this afternoon with my bike and no one else. Lee was busy today, besides, I don't think he would've gone anyway, as the weather was pretty bad! Basically, it has rained (poured more like) all over the South East of England for the whole day! And it was windy.....but the temp was perfect for mountain biking.
I was only out for 1 and a half hours. I saw one other cyclist and he was, like me, absolutely soaking wet & very very muddy! I had it up my back, up my front, up my nose, over my shins, in my eyes (even though I was wearing glasses), and in my mouth too!
It was sooo refreshing being out in all that rain & mud. Much better than Leith Hill last Friday night, even though it wasn't raining at the time.
I took a few pics and I think in it you can see all the mud over me. That photo is of me halfway down Barry Knows Best. You can't see the rain I don't think. Sooo refreshing:) I made a nice cheese & ham with Dijon Mustard sandwich and thoroughly enjoyed that when I finally got back to the car.
When I got home, I learned that the waterproof seat covers I put in the car aren't actually waterproof! The car needs a wash, the bike needs a wash, I needed a wash, My clothes needed a wash. Everything needed a wash;)

I am back home now, all nice and warm and am cooking dinner. I do apolagize if I seem to go on with my cycling! It must get a tad boring after a while. Oh, My ankle was back to "normal" this morning:) It happens like that.....all the time! Somedays I can't walk one inch, other days I feel I could climb Mt Everest. But most days are somewhere inbetween. I thank my Mum & Dad for that. They were very protective of me as a child! I know younger Haemophiliacs who need wheelchairs!

On another note though......I have been having some fun on the Hep C Forum these past few days:) A few of us on there have been kind of writing the script for a Hep C Movie:) All in the name of fun. It was just like being at school again. I haven't written anything since double English back in 1986! I have written a few poems over the years but nothing else. Oh, sometimes I jot down my dreams if they are particularly memorable. I do Love dreams & nightmares. Sometimes when I am asleep, I am woken by something, a noise outside my bedroom window. My flat is well away from the road and is pitch black too! I always sleep with my window open whatever the weather. I am frozen in place on my warm mattress. I can't even move my head around to look at the window. I wait a few minutes, eyes wide open, staring horrified at the ceiling. I need to look to my left towards the window. My eyes are getting acustomed to the dark by now. I am afraid I will make too much noise with my head rubbing on the pillow as I turn! Almost waiting now for the empty mattress between me and the window to depress slightly with the slow moving weight of a strange figure. I am convinced that someone has climbed in through my bedroom window and is slowly, quietly standing on the edge of my bed! I stop breathing! All I can hear now is my blood pumping through my veins! My feet are the proverbial mile away, My hands have left my body and have disappeared completely! From somewhere, I manage to look at the window, I see my garish curtains against the dark of the night outside. There is nothing there! But I did hear something! Slowly but surely, I prize myself out from under my duvet and walk up to the curtains. All I can see is a very faint light coming from outside, My one single hand raising slowly up to the curtain. I make a tiny sliver of space to look through......nothing there! I lean my face right up against the glass to make certain there is no one out there! The trees are moving in the wind and nothing else! I still have to check the rest of the flat to see that all is well and there isn't anyone hiding! Only now can I tip-toe back into bed and stare at the light coming in through the curtains again, imagining a figure standing there! I move my eyes around to see properly. Nothing happening. Now, finally, I can go back to sleep and find my most favorite place ever!

This happens several times a year. Every time is the same! I am pretty sure that if someone did climb in through my window like that.......I would be useless! I'd like to think that I would behave in a slightly different manner!

Sleep well,

Jason

35th Injection & Sleeping Trees...

Richmond Park, last Wednesday.

Thursday saw my 35th Interferon injection out of 48. I just cannot believe how 'normal' I feel! Do I feel a bit guilty? Yes I do! I know for a fact that it isn't that easy and some who are on exactly the same tx have some real terrible times! I read about them often on a Hep C Forum I visit. I feel for all of them! On there too are some absolutely wonderful people who care beyond belief that they are alright and do everything they can to help them feel better.....With advice, warm words and comfort....All from personal experiences too. They have all been through it one way or another. I feel very safe knowing that I too have these folk to help me if needed. Thanks guys & gals:)

Pain has come along and shoved his ugly face in my general direction on numerous occasions over the decades, years, weeks & days! Actually, not a single day goes by where there isn't any! But on occasion, it comes along and stays and really sinks his teeth into you....Like a Pit Bull dragging a rotten log, three times it's size & weight, down the path in the local recreation grounds!
Since mid last week, this dog has come and gotten hold of my right ankle....I do my utmost to avoid being dragged by this wheezing, slobbering beast! There is such a thin line I am able to keep from snapping! I can stay indoors and sit and think about the pain, not moving, thinking of ways to have it slain, but this doesn't actually work. I need to use my ankle to keep it from locking up and rusting solid! I have some pretty good pain killers, I only use these last thing at night when I need to sleep....sometimes I still wake with a sharp intake of breath through my clenched teeth. Instantly sitting on the edge of my bed, feet trying to feel the soft carpet. Need to get up and walk around for a while....get that blackened, scorched, thin and watery oil warmed up again. 3am, 4am, 5,6,7am....it doesn't care what the time is!
Still, all that these past few days, has not stopped me going out for my bike rides. It has in the past of course.....always will. But as I said, that thin line can be kept taught, but unbroken. I have managed to keep this up since Wednesday. It will go eventually though. I just don't know when. Like I don't know when it is coming in the first place.
Richmond Park saw me twice last week, once with my best friend Jac. Once on my own. Saw a sleeping tree....home of a thousand bunny rabbits. Thank you Mr Tree for falling asleep and giving us these wonderful tunnels where your roots used to keep you from tripping over. We never had a home like this before!
Last night Lee and I were out for a quick ride around our usual loop of Leith Hill. Pitch black, very wet and muddy! Plenty of permanently surfacing, solidified Eels. Must remember to stay away from this particular hill until next Summer. It is going to be permanently waterlogged until then. Pitch Hill will be a much better bet as it drains very well and most of the tracks are covered in chopped bark, like mulch.
Because of the terrain, I had to chocolate foot (Put my feet down) more than once I can tell you. Plus I was extra cautious where my ankle was concerned. Normally done in one hour, took over two! I remember thinking, when we were right over the furthest point away from the car.....If my bike disappeared in a puff of smoke, I would be totally & utterly useless. Walking is out of the question with this foot! But I can use my bike as a kind of walker (Zimmer Frame).
It didn't disappear, and I cycled back to the car park, shins looking like they had been shat on by a small dog with diarrhea. I did however, find that I had picked up a slime, wet and utterly gross looking slug on my travels! I really don't like slugs! Eversince I put on a shoe one morning, getting ready for school. My shoes were out in the conservatory from the night before. I sipped my socked foot into the shoe and felt something right at the toe end! I took my foot back out and noticed a yellow, orangey stain on my toes! I tipped and shook the shoe until this burst open giant orange slug flopped onto the floor!! I nearly puked! I HATE SLUGS!

Thinking back to last Monday....That may have been the cause of this bout of pain. I went with my neighbour (upstairs) to Bushy Park & Hampton Court Palace for the afternoon. It was a wonderful day, with plenty of sunshine and Rutting Deer....& walking! Quite fascinating it was too. We came across one group of Deer, made up of about 15 females & one giant Stag! Antlers the size of Christmas trees! He seemed to be keeping them in check and waiting for a good time to do his 'businesses'. Three times another Stag approached and retreated from this harem. Not so big and obviously not so bright either as the bigger and better looking Stag. Each time he would walk very slowly up to this group and circle halfway around the back of them only to be chased away by the bigger Stag, calling out to remind him who was boss. You have to give it to the other Stag though. If at first you don't succeed...try, try again.
Hampton Court Palace was great fun too. I have only know my neighbour for about one year. Her & her husband are such wonderful people. They know nothing about me health wise. I wish I could tell them....don't know why. It is such a big part of my life. Worried what they might think of me! I had some not so nice reactions about my HIV when I was a teenager! A girlfriend of mines parents were none too pleased about the 'situation' shall we say. This was back in 87 I might add, When ignorance was very rife and juicy! I'm not so sure that it is any better now really.
I did tell her I had Haemophilia though. I left it at that. Maybe next time we meet.
HCP is such a charming place! I Love the kitchens. I have always said I would Love to travel back in time to visit these kinds of places.....The sights, sounds & smells! Christmas is coming up soon.....A Time Machine please Santa:)

P.s. My numb little finger has over the last few weeks, nearly gone away:)

Jason

"The Edge of My Bed"

All seeing, all knowing....My Eye!

What the hell is that noise! Beep! Beep! Beep! Beep!........Beep! Beep! Beep! Beep!
Jason! Time to get up! Breakfast is ready! Get dressed and get ready for school! I am not going to tell you a bloody gain!
What? School? Not today surely! I haven't been to school since 1986!
I turn over and try and fall back to sleep. Where was I? Ah yes.....levitating....Through will alone...I can take off just by moving my arms gently....like an Angel. Absolutely no effort needed. I Love that I can do this! Building tops & trees are my hiding place. Always at night! The darkness is a wonderful place to be. Everything seems to be covered in a thin film of water. I would slip right off if I were climbing up here! I can see the streets below....not a nice place to fall! They are familiar to me. I don't have to worry about finding dark, narrow, rubbish bin strewn alleys to hide in. I am above all that. What I don't properly understand is; Why do I seem like the only one who can do this? I can see other people below....walking along the deserted streets. I am invisible....not in the real sense...but, just because I am not expected to be up here. No one would beleive it! One look away and I would be gone! I hear voices below; There is nothing there! Don't be so bloody daft!
Beep! Beep! Beep! Beep!........Beep! Beep! Beep! Beep! Just what the hell is that noise?
Look....there is a lorry....thats it! A lorry reversing! No! It is not moving! It's lights are out! What is it?
I silently move along in the air....staying close to the roofs and tree canopys. I Love the way the street lights throw thier orange glow over the road below. Large puddles of light. I can see more people. No idea about me! I like it that way. I am silent. I hear everything there is to be heard! I see it all! I Love this freedom. Only at night! The days are for the living.....the nights are for me! I was born at 01:13.....Perfect!
Moving along further still.....faster.....down slightly to a dark corner of Brinsworth House. I use the cover of a big, old tree to hide from anyone looking. In the big front garden I peer over the wall. I notice a bench "In Memory of.......". On it is sat two young people. Apparently trying to find something more than just nothing! They have no idea I am watching. Not interested I leap back into the air. As high as the tallest house down here. A few lights are still on. People getting ready for bed after a boring night out. What can be better than this. I can go anywhere! I don't need drink nor food! I don't even breathe.
Am I the only one? Where are all the others? The sky should be full of them. I am quite happy to be the only one here! This is the way it should be. Me, alone and in darkness! All seeing & hearing. This IS me!
Another person down on the street below....just a dark figure....in between puddles of light....standing still! Stopped to light a cigerette perhaps? Their arms are by their sides! Waiting for a friend even? I move along behind the roofs and chimneys of the houses.....not taking my eyes off this strange dark figure. There is no one behind him. My god! Is he looking at me? Surely he can't have seen me! I keep moving....through the wet branches of a tree....his face is definitely following my movement. I stop for a moment...ducking behind a slimey wet rooftop, leading down into an overgrown garden. I take a peep over the very tip of the roof.....towards where the figure is. Slowly he comes into view. He is facing me straight on now.....head looking up right in my direction! Face is as black as midnight! Eyes small and wanting! Mouth shut, hungry! He is almost on me before I realize that he has taken off and is coming right at me! This cannot be happening! No! I must get away.....I can't move...I am frozen in place! There he is.....reaching to grab me....Beep! Beep! Beep! Beep!.............Bloody hell!
I am sitting on the edge of my bed. Eyes still half closed. It is light outside. Glass of water in my hand. Phone! SHUT UP! I switch off the alarm on my mobile...re-set it for 20:27. I take the top off of my meds holder and fill my dry mouth full of pills! I have amazed many with my pill swallowing abilities. All in one go, they go down.....into my stomach. Water pours over my face and chin. I sometimes miss my mouth entirely with the glass! It drips into my naked lap. I wait a minute....air displaced by the pills, bubbles up to the top of my throat. My duvet drags me back into bed and once again I am sleeping. Looking for the night again!

Jason

One Year On from Ben

Diana Fountain, Bushy Park, Today.

What a wonderful sunset this afternoon! I had been for a little bike ride (3 hrs) around the Surrey Hills with my friend Lee. A pretty cool day with no crashes either. Plenty of other like minded mountain bikers had already flooded the little shop in Peaslake Village & had already scoffed all the sandwiches! Lee had to make do with a sausage roll and I had bought my home made sarnie & date & marmalade cake...MMMmmm! Pitch Hill & Holmbury Hill felt the big knobbly tread from our tyres and was kind to us in return for not skidding too much on their root sodden backs. A medium drive home, traffic had been diverted on our trip home and also a fatal motorcycle crash didn't help. Box Hill (Rykas) on a Sunday brings out, amongst the more sensible riders, some very fast & irresponsible maniacs.
Drove through Bushy Park and saw the sun setting behind Diana, dropped Lee off back in Strawberry Hill. I just could not resist going back into the park for this wonderful snap, Swan et al.
A great day and talk of a trip to Lulworth Cove with our kayaks sometime in the next week or two:) All is looking good:)
Also today see's the one year anniversary of when Lee & I and my younger Sisters partner Nathan hiked up Ben Nevis. It was a wonderful experience and something we want to do again. When I have finished tx I will plan another trip up to Scotland to do just that! In the photograph I took of the summit (see below) you can see Lee & Nathan approaching the summit. It looks very eerie with them being the only ones in the photo. There were a few others up there too, but had the good manners to duck whilst I took it;) The drop on the left is not for the faint hearted! I had to have an injection of Factor VIII for my Haemophilia on the summit in the frozen ruins of the old observatory, and the thin tube that comes from the syringe to the butterfly went solid as it was so cold! My feet were killing me and I still had a four hour hike to get through before I reached the bottom, and a 9 hour drive the next morning too. I have done it three times now.....Piece of cake;)
We were the last off the Ben that night and for 2 hours were hiking in pitch black darkness! We were very well prepared for all emergency though and had very full Camelbaks & some pretty cool torches. Plus my codeine phosphate came in handy I can tell you! The next morning we were all totally and utterly F****d! Mind over matter and painkillers saw us back to London safely:) I won't tell you about the burger and fries we had in the Glen Nevis Restaurant when we reached the bottom.....Yes I will... The best ever burger in the whole wide world that I have ever had!!! Brilliant weekend!

Ben Nevis, 15th October 2005.

Jason