June 21, 2006
Move over Stig, Jason's here.
Little competion in this entry. Anyone who can leave a comment explaining what the title means, wins... a... umm... "well done" posting from me. The clue is that I'm down in the dumps today moodwise.
So, yeah, depression is really bad today. Tears and all that shit. So embarrassing. Its been deteriorating for 36 hours or so now. And I just KNOW that its going to get worse tomorrow for a fact. Why? Cos I see the psycologist for the three month review, and any one who reads this drivel regularly will know that Ive gone in there sobbing & suicidal and theyve sent me out with a three month review and instructions to phone them if it "gets bad". I always leave that appointment ten times worse than I go in. Ironic considering its meant to make me feel happier! Good ol' NHS! Gotta love 'em.
Fathers Day was a big success though. And that helped my mood a lot. I like being generous. It's seriously skinted me buying all the stuff for Dad but it was worth it. He loves the radio. Although it had a hiccup this morning, couldnt get it to switch on, but pulling out the power plug and putting it back in to reset it solved that problem. I upgraded the firmware on it too from the official radio companies website. You can see the radio I got him here. I got him the black one. Very nearly got him the shocking pink one for a joke, but at the last second decided against it. :)
Am very impressed with the quality of the sound on Digital Radio. After so many years of crackly hissy MW and slightly better FM signals, its awesome to hear absolutely crystal clear audio. Theres also a better selection of stations too, with more comedy and drama / varied-speech stations, rather than it all being carbon copy commercial-flooded pop stations.
The pain has been fluctuating this last few days since my last entry. One day its OK, just the always-there-achey-throb, and then other days its breaking through the pain killers all the time, and Im not getting more than 20 minutes break between each session. The weekend was horrific for it. 3 days it took to settle down back to my so-called-normal.
OK, im gonna call it a day on here. Am struggling to concentrate cos of the depression. Mind keeps wandering. Its taken me over an hour to write this little lot. Ive just had a 2 minute convo with my mum saying if I was ready for the appt tomorrow and i said how it was a waste of time, then she said "well you have to tell them this n that n the other", and I said "I have done, every time, and its the same result every time, they are gonna do nothing, its a waste of time tomorrow". And she screwed her face up n walked off like i'd slapped her in the face or summat. She probably cant even tell how deep the bloody depression is today.
It's funny. If anyone had asked me up until this last 12 months or so, who I was closer to, my mother or my father, I'd have said my Mum without hesitation. But now, it seems to have totally changed. Only Dad seems to be able to read when things are bad and he does try to help me, but mum, she just seems to get pissed off with me for being depressed. I swear she sees depression as failure or something. Its hard to explain. Failure isnt the right word, but it is something like that I think.
When u get no fun out of life, everyday is a painful hell on earth experience to get through, u get no sleep, and have no life, no love, no money, no work, and no hope of things getting better for the immediate to near-distant future, then you have to ask yourself just why you are here. I've asked myself that today and not for the first time. And I still cant answer it as I couldnt the first time I asked it. I dont know why. Its certanly not a case of me being here for me ie to live my life for ME (for fun, to enjoy it etc), thats for sure.
Will see u all another time. Think I might go to bed and ride the depression through. Will go and cuddle my pillow. Thats the closest I get to physical contact these days when things are bad like this.
Bye for now,
Jason.
Pain: 5/10
Depression: 9/10
Posted by Jason at 07:10 PM | Comments (1)
October 25, 2005
I say "neigh, neigh, and thrice! Neigh!"
As regular readers will know, Im a bit of a "World of Warcraft" online game nut. Ive played it since its launch in February, albeit at very staggered sessions due to my epilepsy problems during the first half of the year, but since gettin back online for longer periods Ive been playing it more.
I do love the game to bits, its awesome, but one thing that relly got my goat was how you hve to RUN everywhere, with the exception of the airport style "gryphons posts" that fly you around the world to pre-set points. But they dont always go to the direct place u need so you have to walk there. Or if you have a quest in the middle of the "countryside" you have to run/walk there too. And it takes forever. At one point last week I had to get from Booty Bay to Descolace which are on two seperate islands for a start off and in real time it took nearly 20 minutes to get there! That shows you how big the world is that the game is set.... and they are going to expand it soon! God help me.
Anyways, once you are level 40 or above you get access to a horse, that increases your running speed 60%. Still not as fast the slying gryphons, but still a damn site faster. And I was pig sick of all these level 40 - 60 players runing past me on their old nags, and leaving me flailing behind to run behind them. So, last week i decided that I'd been in the level 30's for too long, and it was time to dig in and grind my way up to Level 40.
Well, yesterday I made it!!!! Yayyyy. But I made myself ill in the process. I spent nearly all afternoon and mid evening on the game to finally complete the level 39 grind, but I got there at the expense of major limb twitches and headaches.
I got my horse though, by buggery! So Im now one of those level 40 - 60 players who royal it over the lesser sub-lvl40 players and laff at the runners and walkers thinking "feeble player, isnt even a level 40 and got a horse! ha!!!"
Turns out my horse is a demon horse though. Cos my character is a Warlock. Its got flames coming off its hooves, and out its eyes and nostrils. eeeek. Lucky i can control it eh? :)
Below are two screenshots. One of the gryphon rides, which I soooo love. And of my little pony, skinny and bony, aka SwanVesta - Ill let u guess why ive called her SwanVesta.
And yes, I know that the character on the horse is a female warlock. Theyre better lookin than the male ones esp when you are running everywhere and staring at their arse for 9 months.
The pic on the left is of the gryphon flights, flying into Stormwind Castle. The picture on the right is of SwanVesta, my little pony skinny and boney, taken in Redridge Mountains Lakeshire town. Note the pumpkins, theres a halloween theme running through all the towns in the game for their "hallow's end" celebrations.
Anyways, enough of the happy stuff. Back to the depression n stuff....
Depression wise things have slightly improved, I dont feel quite as sad as I did 48 hours ago - the acomplishment of getting SwanVesta has certainly helped in raising the spirits temporarily. As mentioned previously the ABs have stopped now. My folks were at the GPs office yesterday, and they went to see the GP about their own problems, but my Dad mentioned how my ABs had ended, the wound was a little better, but not much and the WW problems were still there. He asked "do you think its worth him coming back to get some more ABs to keep them going" and she just shook her head and made a noise like "nehhhhhh" (no).
Bugger. Thats all I can think so say about that at the moment.
Pain wise, things are Ok right now. Although when out shopping this morning I made a muppet myself in the Marks and Spencers coffee shop. Not only for being stupid enough to pay £2 for two cans of own brand diet cola, but by having a pain attack on the way to the table and dropping the tray, breaking the glasses and sending the ice skittering over to the customer toilets. Talk about cutting out the middle man, eh?
The stoma bleeding is just the same, just a slight dribble so its more annoying than being anything to worry about. It affects the seal on my flanges which is the worst part about it really. Although if it continues or increases, then the anaemia risk comes back agian. *sigh*
Am trying to get my mam interested in computers at the moment. I think she might be gettin the bug, as she spent about an hour on my Dads PC at the weekened with him helping her to use the mouse and so on, and tonight she came to ask me if i had any intereactive training cd-roms for the computer that she could use, or some learn to use computers books. Sadly I dont, not for Win XP anyways, so shell have to buy one from staples or something.
Speaking of computers, Im sure you know I dabble at being a webmaster. Well, one of the sites I have done for someone has been ripped off, and totally copied over to another site! I got the email a while ago and have fogtotten about it until today, but its a complete copy of my emmascott.co.uk site (and the old colostomy website design that I used to have, as the old ostomy design was a spin off from the ES site.) I wont publically give out the URL of the site thats ripped it off (might in a PM though. :P) as im not giving it the hit traffic, but its been sooo badlly ripped off. Its been about a week since I saw it now, so maybe theyve changed it over to another design from somewhere else since then, as I know ES wasnt too pleased that this guy had done it, and she did know him too which made it worse.
I guess I should be flattered. But more than anything, Im annoyed for her. It looks bad you see as some people will wonder which site came first. Grrrrrrr.
Anyways, Im gonna go for now. Need a drink, so will catch you all later.
Bye for now.
J.
Pain: 3/10
Depression: 4/10
Posted by Jason at 07:14 PM | Comments (0)
September 23, 2005
Coffee Wars
Had a row with my mum this morning in town. I was taken out shopping, sill yme thought it was a regular shopping trip, where we go to the shops, i go my way, they go theirs. We meet up in Marks n Spencer coffee shop, I usually get there first so pay for my drink, and they come an hour later and pay for theirs.
Just before we went our seperate ways in town my mum says "are you gonna pay for the coffee today then or what?" - now, I'd just given her £137 on Monday which consisted of £120 rent, and a few bits n bobs I owed, from 50% vet bills, 50% of the dogs new coat and so on. So, I was a bit taken aback by this. As they know its a touch subject with me. At times I feel like Im just a cash cow to them, and at other times I feel really ashamed that I have to be so tight because I just havent got much money to bandy around like that.
So I say to Mum "I gave u hundred n forty quid on monday, wheres all that gone?" and she says "thats your rent. Whens the last time u bought us coffee? How many coffees have we bought you in the last month?" (the answer to that is two btw). She really made me out to be really tight. In the past when I have offered to pay for coffee voluntarily its been turned down every time. I only get £160 every two weeks for gods sake. And £120 of that is rent every time!
So, instead of arguing further in the street, I just walked off. When they came to the coffee shop I put the money on the tray for them, and she says "no i dont want it. You keep it". In my mind I was saying "you cna dman well take it, yer not makin gme feel like n shit and NOT taking the money!" This £3.40 went back n forth across the table for like ten minutes. I felt like saying "so if u didnt want the money in the first place why did u do that in the street? to just make me feel like shit then or what????" but I didnt.
They know I am depressed, and that I have low self esteem. They dont know Ive been thinking of killing myself though. However I dropped a few hints with my dad today in a conversation, and he picked up on them. Theyve both been nice as pie to me since then.
To top off the morning out in style, I had a pain breakthru attack on the way out of the supermarket and ended up in a heap sobbing on the back seat of the car. One day Ill have a trip out go well. One day.
Am currently trying to burn a couple of copies of Mary Poppins Musical London Cast dvd bootlegs for Emma - my friend from a few streets over. Damn DVD Drive keeps locking on this second disc for some reason. Its just a bootleg so its not copy protection thats causing it. Its most odd. Has cost me 4 discs so far this session. Grrr.
My folks got the dehumidifier theyve been wanting for so long. Ten percent days at Homebase... gotta love them. Anyways its been in the basement about 6 hours now and its already dragged well over 3 pints of water out of the atmosphere. So goes to show how damp it is down there.
Its a week tomorrow til we go on holiday - just off up the northern end of the country to Northumberland - Seahouses area. My mum has a bug in her bonnet about seein Holy Island, so off we go. Id rather stay here. More comfortable, then a tin can caravan. *sigh* I should quite complaining, some ppl dont get a holiday.
Anyways im not gonna be long out of bed tonight. Am really tired. So shall sign off here I think. Have a good night y'all.
Bye for now,
J.
Pain: 5/10
Depression: 7/10
Posted by Jason at 08:24 PM | Comments (0)
September 21, 2005
A slow lazy day
Have done very little today. Had a breakthrough pain attack at 5am, and by the time it had faded it was time to get up. Up until then I was managing to sleep reasonably well, although it took methadone and tramadol to do it.
Lucy is in a mood with me lately. With my struggling to sleep – and my folks just not being able to sleep with her in their room because of how she poddles around the room all night – shes been banished to the living room downstairs for the nights now. Last night was her second time down there, and shes totally ignoring me now. :/ Shes pulling the guilt strings quite nicely.
My mother had her blood pressure taken again this morning, and it turns out that it was reasonably ok all along. She had a suspicion that the machine at the doctors was giving false readings, so she went to the NHS Walk In Centre this morning, and got a readout on their high tech super duper machine, and like I say it was reasonably normal. Still doesn’t explain her symptoms but at least its not BP related now.
Fell asleep on the bed this afternoon. I really should stop that. I’ll never get into a sleep pattern on a night again if I sleep all the time in the afternoon. But if I don’t sleep on the night, Ill take it when I can get it. Viscous circle n all that.
Am back online for a cpl hours now. Gonna try n catch a friend on Yahoo Messenger before I log off for the night. The pain is back and increasing though so I don’t know if Im going to make the couple of hours last more than 30 mins. We shall have to wait and see.
That’s it for today. Short and sweet. Oh yeah, before I go. If anyone read yesterdays post and the picture wasn’t in it, well the I’ve added it now. I wont be held responsible for any “awwww”-ing you may do when you see it. Later on this week I hope to post an updated photo of me too on the site, but we’ll see about that. That’s a big step to take. :)
Take care.
J
Pain: 4/10 (but rising)
Depression: 5/10 (slight improvement over yesterday)
Current game: Fahrenheit (Xbox)
Posted by Jason at 06:24 PM | Comments (0) | TrackBack
September 20, 2005
Things must be bad if im back to writing stuff in here
(Edited Sept 21st 2005 - Photo link added)
Hey, where the heck y'all been? I've been sat here for nine months waiting for someone to stop by and to tell you the latest goings on in my life?! Oh, hang on, I left didnt I. Not you. Ahh. Whoops. My bad. Seriously though folks, I am sorry it's been so long. I never intended to be away from the site for as long as I have been, but things kind of got out of hand in RL and I needed to try and sort things out. Sadly theyre as bad now as ever, but I'll get into that in a minute.
For those of you who are new to the journal. Welcome. A word of warning. As always this journal focuses on my life. Its the none-sugar-coated version. A place for me to vent and get things out of my system. To whinge and moan. When good things happen, then they will be documented too. Aside from this you can also expect to read about the boring mundane crap that I do in my life.
As always the entries from 2004 are still here. You can access them by clicking on the relevent months listed under the "Story So Far" column featured down towards the bottom of the page. Occassional email reminders can also be set up for the journal to mail you every so often as I post an entry.
So, all that stuff aside, just whats been going on over 2005 for me? Well, pull up a pew, grab a cuppa and I shall begin.
I'm presuming everyone reading this knows about my health problems, so Im not going to go over old ground with them, but I will bring you up to date with the new stuff. Bowel wise, the blood is still coming and going. I still have the original disease and always will have.
Pain wise, things have been terrible. For the first half of the year I was sort of managing to cope OK on the whole with it. It wasnt easy, or fun, but I was managing. However, for some reason in the last 6 weeks or so, the pain has blown out of all proportion. I had nearly 6 weeks of constant unremitting pain, with three or four times as much breakthru pain as I would normally have. It was terrible. At the same time as this the wound at the back end started to puss out again with blood and muck. However more disturbing is the fact that at the same time my bladder started to malfunction. I'm either desperate as hell to go, and cant. Or I'm going and not knowing it, usually when not in the bathroom. If you catch my drift.
I cant help but wonder if something is still going on in the rectal cavity that is eating away at the nerves still. That would explain all the problems in one go. The bladder isnt a UTI problem. Theres also no MRSA though as of the last swab - I could do with a new one though to check its not back.
Fit-wise, ive been managing that on the whole. I just hope that coming back on the PC again for a bit longer each time doesnt start to bring them back on again - which is as you remember the reason I had to quit the site in the New Year.
The biggest problem - aside from the pain - is depression. I am struggling so much with that lately. The last couple weeks have been very bad, the last 48 hours have been the worst. I just cannot cope with the pain and the humiliation of doctors examinations and being at their mercy anymore. Im now 31. And Im nowhere in life. The pain has eaten away at what strength I have and I just havent got anything else left to give it.
Everytime I see the councellors they say the same thing. "Your depression is rooted to a physical problem, until you get rid of the physical problem we cannot get rid of the depression. Its not as if you are mental, then we could help you!" Well, I do actually think Im starting to go mental now with it. That is just such a cop out from them. It sucks.
I feel so empty inside now. So alone. Theres no strength left in me. No energy. No fun. And certainly no desire to live like this anymore.
I feel so lonely at home. Im living with my folks still of course. But I have very few friends in RL. Those I do have I maybe see for a couple of hours a week, if that. They are great, I love them both to bits, but once I close that front door and come back home, I feel overwhelmed by lonliness. This could all be my problem though. I'm reluctant to let people into the real me. Twice in my life I've attempted it. Twice I was immediately brokehearted.
For the majority of my childhood I was alone. Jus tme and my folks. I never really made friends at school and we lived out in the sticks so come the summer holidays I had to entertain myself for 12 weeks as the nearest friend was 75 miles away (I went to a privat eboarding school til I was 8). Being alone never used to bother me. I actually prefered it. But now, its terrifies me. I dont want to die alone.
Many nights over the last month I'd have given everything I owned to be have been able to cry myself to sleep, but I couldnt. At least then it would be a release. Yes, Im taking anti-depressants. Full strength, maximum dosage. Sometimes they work. But they havent been able to cope at all with the last month.
So you can see, depression is as big a problem as the pain now. I just cant cope anymore. And so, here I am, falling back on the old faithful idea of writing down my problems to at least try to get them out of my system, because I struggle so much to talk about them in a conversation with people. I just dont want people to see me like this. So I hide myself away from the world. Hoping things will improve. But they rarely do.
Im still lookin for the reason why this is happening to me. There has to be a reason. I thought i'd found the reason recently. But I hadnt. So i'm still looking.
I've come close to deleting my website and closing it all down a couple of times over the last year. It was never meant to be as much hassle as it can be. Its great that its helping so many people though. But is makes me so sad that while I can create something like that that helps so many other people, I can do nothing to help myself. Its all out of my hands nows, I've done absolutely everything I could think of to improve my situation. Im in the hands of the doctors now. Doctors who have all but given up on me. I need another opinions in nearly every field I'm a patient of, but Im scared to go get those fourth-opinoins (yeah, its really that many doctors down the line now) because that is the only last little bit of hope I've got left. And if they said that I really have expired all options then I lose that one bit of hope. And if I lose all hope, then I lose the will to stay here.
Oh yeah. A few of you know of the spinal operation the pain doc wanted me to have. It was a guinea pig situation, with a 50/50 chance of gettin a 40% reduction in pain and a 30% reduction in methadone. Well, a very similar operation was performed on city hospital this series. The woman had much better odds of pain relief than me, as the area affected was her kidneys and it was a specific pain procedure that they were doing on her (for me its a urinary incontience cure that they want to try on the nerves in the hope it will kill the pain because "in theory" it should work".
This poor woman was awake for all three hours of the operation - just as they want me to be. And she SCREAMED her way through it in agony as the surgeon was poking this 6inch needle into her spine area and kidneys. At one point they had to stop the operation because she was sobbing and totally unaware of where she was and what was going on. Id said to myself that I cant be a guinea pig anymore. Being a GP has left me in this situation. Being one again, with a spinal operation could leave me in a wheelchair and impotent and more incontinent than I already am. I just cant be a guinea pig anymore. So after seein that programme I turned down the operation officially. I'd need better odds before I committed myself to that.
Anyways im making myself more depressed than I was when I started this, and thats not the idea. So Im moving on.
Danae has moved away to another area of Canada now. We rarely get a chance to talk anymore which is really really sad. I miss the times we'd chat for hours online. Its been a few weeks since I last heard from her so I hope shes ok and doing well.
My folks are ok sort of. My dad has really gone back in this last few months. This is another reason Ive been so stressed at home. He needs a walking stick to get about now, and he's always so tired, feeling ill and so on. I swear his colour his changed, but hes been to see the doctor who says theres nothing they can do for him. Its osteoarthritis, he has to live with it as it continues to get worse. Gee that story sounds sooo familiar. Must be a family curse. From son to father... :/
Mums BP is thru the roof again. Shes having to have all sorts of tests and x-rays over the next week or so to find out what the heck is wrong with her. The doctor doesnt know. So, Im worried about that too.
Lucy is fine though. It was her birthday yesterday - 9 years young now!!!! - and she got taken to the pet shop to go get her present. Its a coat for the winter months. She looks soooo cute in it. I hope to be able to post a picture of it on here later on in the week maybe.
Edit: sept 21st 2005. Heres the photo, as promised: http://ostomysupport.info/jason/lucybdaypresent.jpg
So, thats my update. Now that that is out of the way, normal journal business shall resume tomorrow - ie me making occassional posts about what I've done with my day, how Im feeling, what im doing, whats happening in my life and so on.
And with that, im going to say goodbye. ive missed y'all, and hope to catch you all online soon in the near future.
Take care everyone.
Jase.
Pain: 5/10
Mood: Very sad
Posted by Jason at 06:01 PM | Comments (6) | TrackBack