The fact of the matter is that I am just so tired and physicallt exhausted from the continuous pain that I have nothing else to give it, physically, mentually, or whatever. Its taking all my energy to write this today. For some reason when my depression gets really bad my mind just stops working and I cant think of anything to do, or think anything through, and I end up just laying there in a sort of daze. Its like that today.

The breakthrough pain came back with a vengeance last night. About what... 9pm ish I think it was it started. At 9am this morning I was still in pain. I was getting no more than 30 minute sessions of relief between them. And that was after I'd taken my drugs. It did help lengthen the periods between attacks, but not by much really. It certainly didnt stop it dead in it's tracks.

Ive been asked to beta test another MMORPG game. I cannot say which game it is as theres a NDC in place. I downloaded the beta test code yesterday. Sadly though, theres some major performance issues and I cant really play it yet, the game needs more development to fix the frame rate issues before I can really do the game jusitice. It looks good, but its so stuttery I cant play accurately so keep dying all the time. Frustrating, but it looks cool otherwise.

I've started to write again. I must be desperate. Am writing a story about an internet stalker. They say write what u know about.... not that I know about stalking people, but I do know the net.

Im sorry I cant think of anything else to write. Think I might call it a day, and its only 6pm. Nothing to stay up for. Nowt on telly.

*sigh*

Goodbye.

Jason
Pain: 7/10
Depression: 10/10

Tomorrow I have the dentist. Got to have a filling. Cant wait. Not. I am terrified of dentists. Ive postponed the appt once because I was too scared to go and have the filling. Pathetic isnt it.

The pain has been behaving itself to a degree. Theres been a couple of bad breakthrough sessions this last 36 hours or so, but the trouble is that when I am as depressed as I am now then I cannot even cope with the daily achey thump pain that is there all day every day. Every thump just makes me cringe more and more, and then it makes me want to cry because it wont stopped, and each thump seems to drive deeper and deeper into me until I am practically screaming for it to stop. Its horrible.

And now there is a blockage problem too with the stoma. Gas is still coming out, but Ive not passed anything in three days, and I can feel a wad of stuff stuck behind that stupid u-bend in my bowel. I've started to melt the obstruction away with some glycerin suppositories but its taking a long time and im feeling so bloated with it.

Ugh.

England won their World Cup match tonight. Bugger. Was hoping they'd lose so they'd come home and something else could be talked about on the telly. Its nothing but football football football now. And tomorrow sees the start of Wimbledon, so then it will be football tennis football tennis football tennis for the next two weeks. Woooopie doo.

Sorry I shouldnt be so saracstic. Just the way I am today. Ive not had naymore thoughts on suicide. Its at the back of mind but nothing new springs to mind. I am so desperately unhappy in this shitty world, but I know that it could also be so much worse, and so its hard to think of thoughts like that when that realisation is also at the back of my mind.

Anyways I am going to go to bed. Nothing to do. Its 8pm and the folks are already in bed watching telly. No one to talk to online, everyone is offline so I think i shall call it a night too. Get myself in bed with tartan zip up booties, hot water bottle, heated under blanket and not forgettting to put my teeth in a glass of water. Yeah, I feel old.

Bye for now.

Jason
Pain: 6/10
Depression: 11/10

I was reading some stuff on chronic pain and suicide, and its actually scared me at how accurately it has described my current circumstances. One piece in particular has stuck in my mind. It said:

“Suicide is not chosen; it happens when pain exceeds resources for coping with pain.”

As you’ve seen from my recent posts on here, Ive pretty much exhausted my resources for coping with pain, with the pain doctor admitting defeat, not being able to contact them, or get my meds reviewed etc, and so on. Does this make my suicidal though? Well, I certainly am at a crossroads. I hate my life. I am so lonely, so fed up, have never felt so isolated or so convinced that I will never beat the pain, and never ever be happy and find love etc.

This Chronic Pain & Suicide site also said:

“You can survive suicidal feelings if you do either of two things: (1) find a way to reduce
your pain, or (2) find a way to increase your coping resources. Both are possible.”

To a degree I would agree with that. The non-agreement degree’s being the fact that that is all past-tense and history to me now. I have no new ways to reduce my pain. And I have no ways of increasing my coping resources.

The fact of the matter is this. If it weren’t for my parents, and probably two close friends that I have, I would not be here. If I lost my parents and the pain continued to get worse I don’t know if I would be able to carry on. Especially if I was as alone in my heart as I am now.

Speaking of alone in the heart – this is just a little diversion for a moment. Fucking Yahoo personals have signed up with Match.com, and are no longer doing their free service from Sept 06. Wanna know how much it will cost to use that site in Sept? Brace yourself…. £25UK a MONTH!!! Nearly a quid a day! To be ignored. I can get that at home for free, so why the hell pay for the priviledge? I think that that stinks. Talk about taking financial advantage of people who are lonely and sad and just wanting to improve their lives. Jesus.

Anyways, I digressed. So yes, if I found myself livin alone and still in pain then I would have absolutely no hesitation in killing myself. I think. I don’t know. Its hard to tell isn’t it. Maybe I’d feel differently then. Maybe my closest friends would become replacements for my Parents in a way, and then I’d feel the exact same way all over again. Or maybe the grief of losing them would be so much, that it would finally push the see-saw completely over. I expect that that would indeed be most likely the case, and that rational thought would no longer become the deciding factor, being replaces instead by grief-ridden reactionary impulses.

For some reason this past week I have felt especially alone. I don’t mind telling you that on a night I have gone to bed and cried with the pain and sadness and emptiness inside me, and then afterwards fallen asleep cuddling my pillow just to try n get some fucking comfort and feeling of….. I dunno what the word is.

No, stop laughing. Its true.

This week has seen a first for me. I wrote a letter to the Samaritans. Well, an email. I dint send it though. But in it I just completely vented. I started at the beginning and just waffled. It was a huge piece of text. It was more detailed than the journal entries, which I purposely keep vague as they are public. I really gave it my all. When I finished writing it, I just sobbed and sobbed on the bed. It was a release like none other I’ve had before from crying. But it was all too short. Im back to where I was that night. Would I get the same feeling of release if I mailed it? I don’t know. But even if I did, what would I do then for the next time I got that low?

There are no long term answers to my problems anymore now that the pain clinic has given up on the case. The pain fuels the depression which fuels an emotional pain which makes the physical pain seem ten times worse. It’s a complete catch 22, neverending circle of depression and pain that I cannot seem to break. I occasionally get a wee break from it, but the fact of the matter is that it never lasts long enough.

I do believe in mind over matter though. And I do know for a fact that if I woke up tomorrow morning and realised that I did in fact have a wife/partner/gf that the joy that would bring would likely obliterate the pain for months. So, if I could do that, why cannot I not achieve that same result by simple mind over matter. I don’t know the answer to that, but I do occasionally manage to ease the pain by using mind games and tricks, but the truth is that the pain is so severe now when it does break through that those just don’t work anymore, I cannot focus on anything but the sheer agony in my arse.

But Im a failure and a coward, so I don’t deserve to be free of the pain anyways, if you believe some of the mails this journal generates from one-off readers. There is only one thing that is guaranteed to break the pain cycle and ease the pain for good. And its governed by another catch 22. I’m scared of living with pain and emptiness for the rest of my life, but Im scared to kill myself and destroy my family. I can do neither. So I wont kill myself, but I cant live with my life. And therein lies the problem.

J.
Pain: 8/10
Depression: 10/10

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.

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

So, yeah, the pain is bad. At this moment, its aching and thumping, im fidgeting on the chair. I should be laying down, but I just cant settle, and I've got to do something.

What else has been going on this week? Well, to be honest, not a lot. Im running out of things to say.

Oh yeah. I should actually clarify one thing. About the last post I made. My bestest real world friend Emma asked me what I meant by being scared of being alone for the rest of my life once my folks are gone, when I will have my friends for many years after that.

Now, that is a good point, and I do understand that, but I guess when I say "alone" I mean not only family-wise, or co-habitually speaking, but more so in my heart. That is what would truly kill me. Or to put it another way, if i died either not in a supposed long-term/presumed-rest-of-life relationship, or unmarried, then I would consider my life to be the ultimate failure. That meaning, that the true me was never complete, as I would know that I was never truly happy in it be it physically, emotionally or spiritually. I am always happiest with someone close. Just the way I am. Thats not quite what Im trying to say. Im finding it difficult to put in to words, but thats the basic jist of it. And thats why I was saying that it doesnt mean I'd jump in with the first slapper to look at me, it would still have to be someone I connected with and so on. Although I feel desperately lonely, it doesnt mean id be driven to acts of desperation to counter it.

Can u tell my depression is bad tonight? Im waffling again arent I? Thats always a sign that im depressed. Some ppl shut up and say nothing. And I do do that in REAL LIFE situations when depressed, but when on IRC or boards or journals etc I get this overwhelming urge to waffle, as if the readers themselves can pick up on the huge gaps Im having between paragraphs where im thinking of what to say. Heh. Sad, isnt it. Oi, yer not meant to agree!

*sulks now*

No, dont u come lookin down here for more waffle... im still sulking!

*still sulks*

OK, enough sulking. Im making myself look even sadder.

I used to have a saying: "Always leave 'em laffing". I "used to" as its rare I use it now, and so in the spirit of that I am going to leave you all with a couple of email funnies that I've been sent this week, which have made me laugh - a very hard thing to achieve considering the week I've had, what with the pain clinic and all!

So, first up, a funny little animated movie, detailing the history of the Schitt family. (Thank you to my great pal kathy for forwarding this to me.)
http://www.barry.fireflyinternet.co.uk/JackSchitt/Jack_Schit.htm

Finally, here is a mail thats about the differences between a dog's diary, and a cats. (Thank you to my bestest Canadian Hun Danaé for sending me this.)

=========================================

As seen in a dog's diary:

7 am - Oh boy! A walk! My favorite!
8 am - Oh boy! Dog food! My favorite!
9 am - Oh boy! The kids! My favorite!
Noon - Oh boy! The yard! My favorite!
2 pm - Oh boy! A car ride! My favorite!
3 pm - Oh boy! The kids! My favorite!
4 pm - Oh boy! Playing ball! My favorite!
6 pm - Oh boy! Welcome home Mom! My favorite!
7 pm - Oh boy! Welcome home Dad! My favorite!
8 pm - Oh boy! Dog food! My favorite!
9 pm - Oh boy! Tummy rubs on the couch! My favorite!
11 pm - Oh boy! Sleeping in my people's bed! My favorite!

As seen in a cat's diary:

Day 183 of my captivity... My captors continued to taunt me with bizarre little dangling objects. They dine lavishly on fresh meat, while I am forced to eat dry cereal. The only thing that keeps me going is the hope of escape, and the mild satisfaction I get from clawing the furniture.

Tomorrow I may eat another house plant. Today my attempt to kill my captors by weaving around their feet while they were walking almost succeeded - must try this at the top of the stairs. In an attempt to disgust and repulse these vile oppressors, I once again induced myself to vomit on their favorite chair - must try this on their bed.

Decapitated a mouse and brought them the headless body in an attempt to make them aware of what I am capable of, and to try to strike fear in their hearts. They only cooed and condescended about what a good little cat I was. Hmmm, not working according to plan...There was some sort of gathering of their accomplices.

I was placed in solitary throughout the event. However, I could hear the noise and smell the food. More important, I overheard that my confinement was due to my powers of inducing "allergies." Must learn what this is and how to use it to my advantage.

I am convinced the other captives are flunkies and maybe snitches. The dog is routinely released and seems more than happy to return.

He is obviously a half-wit. The bird, on the other hand, has got to be an informant and speaks with them regularly. I am certain he reports my every move. Due to his current placement in the metal room, his safety is assured.

But I can wait, it is only a matter of time..my Time.....The Cat

=========================================

*signs off this journal entry with the smug satisfaction that you are chuckling*.

Until next time....

Jason.
Pain: 6/10 (peak: 9/10)
Depression: 7/10

No, he hadnt received it. And thus all the other questions become moot points. Good ol'd NHS. I gave him a run down of what I was complaining about, and it was clearly all news to him. The nurse I saw last time who had made the errors has since left the hospital, but he said he'd have a word with the reception staff about it too. I wont hold my breath.

He's fobbed me off onto another doctor anyways. Same hospital, but a spinal injuries pain management consultant. They said that unless I have the spinal operation then I am at the end of the road as far as pharmaceutical pain relief goes. But he also said "If you are going to stubbornly refuse to even entertain the operation then Im wasting my time referring you, as well as yours."

Am I being stubborn? Thats the question Ive been asking myself over the last 24 hours or so. I suppose to answer that question i need to fully understand what the word means....

1. Unreasonably, often perversely unyielding; bullheaded.
1.2. Firmly resolved or determined; resolute. See Synonyms at obstinate.
2. Characterized by perseverance; persistent.
3. Difficult to treat or deal with; resistant to treatment or effort: stubborn soil; stubborn stains.

As defined at Dictionary.com.

Looking at that I suppose under 1.2 then yes I am stubborn. As I am firmly resolved and determined not to find myself in a wheelchair from another operation - only this time on the nerves - going wrong and leaving me in a worse state than before!

I still though dispute I am being stubborn. I say im terrified of it failing and going wrong, which has been the sum total of all the surgery ive had in the last 8 years. Its not as if Ive got a grand precident set ahead of me is it.

My depression has been very bad the last 24 hours too. At one point my Mother who was in the consulting room with me said "so, thats it then, you're saying were at the end of the road excluding that operation and that this is as good as his life will get, and how he's gonna have to live it for the next 40 years or so?"

He just shrugged n nodded saying "yeah, at the moment." To which she said "he will never last that long" - referring to the fact that she knows Ive had suicidal tendencies this past year with the pain going untreated.

*sigh*

Told him that my driving license was history because of his drugs. As if u remember he was convinced it was the pethidine that caused the fit, and the methadone that is causing the jerks. He didnt flinch. Not interested.

He's not altered the medication either. I suppose his hands are tied. He's just passing the buck to his mate.

What do I hope the new pair of eyes will do? Well, a couple of things.

Either...

1. Increase the methadone by 5ml morning and night. That would give me an estimated 2 months of reduced pain until I became tolerant to that increase. (Based on past increases).

OR

2. Swap the opiate for another drug.

AND

3. Arrange a spinal op referral appt in a Leeds hospital so i can discuss it futher with people nearer to me so that my mind is more focussed than it was the day I went to Hull and my arse was in fire trying at the same time to comprehend all these stats and figures about the op they proposed.

I guess the question is whether I think I could plod on like I am doing for 40 years or so if I turned down the op - presuming that theres no further advancement in pain management, which ofcourse there will be in that length of time. I think the answer would be no. Because i wouldnt get back to work, as I wouldnt get the all important "pain free" doctors letter to give back to my employers. I'd also be likely single and alone, which scares me more than being in pain for all that time. Esp once my folks are gone. Doesnt mean i'd rush out n propose to the very first slapper to look at me, far from it, Id still want to do it right and properly ie someone who I like and likes me, have a connection with, all that usual stuff, which is probably why I do see myself as being single for the rest of my life.

I think I could cope with anything with someone behind me. But alone. Nope. No way. Couldnt do it. And therein lies the problem of why i dont think i'd last the 40 years in the current state.

Anyways thats the update for now. Will post more happier stuff later on. When it happens. No holding your breath though now, ya hear! Can do without being sued for asphixiation of website visitors. Thank you kindly. :P

Bye for now,

Jason.
Pain: 5/10
Depression: 8/10

Still, it was good fun. Im sure the established ballet fans will have balked at the altered endings and contemporary reworkings, but for a layman like me it was a good night out.

I swear those guys have inflatable cod pieces though! That must be why the interval was so long (20 mins) - they needed as much time as possible to inflate them back up again!

Got bad arse ache today though. My seat was front row upper circle, and there was a grand total of ZERO leg room, so Ive got bruised kneecaps this morning lol. Also the seat was sloping forward a bit so I kept sliding down it and having to pull myself back up. Grrr! But that was minor niggles over all.

It gave me an excuse to dress up yesterday too. Its very rare I have a reason to do this, but I must admit that it was nice to spend an evening dressed up and get out of the Jeans and t-shirt. Look Ive even got proof of it, as I took a photo! Sick bags optional as its NOT a good picture.

Anyways, my butt is killing me so Im gonna go lay on the bed for a while and give it a rest. Ill see u all another time.

Bye for now,

J.
Pain: 6/10
Depression: 3/10

Theyve revoked my driving license as a result of the jerks getting worse and more frequent when laying down. Of course we drive a lot when lying down dont we! On top of this, they want to admit me for a day of tests hooked up a an EEG machine so that they can try to catch the jerks happening. They are still convinced that it is epilepsy-proper, and not just after effects of the drugs I am on.

It almost feels like i've lost my freedom. Its hard to describe. I was so pleased the day I got my license, as it hadnt been an easy thing for me to pass with being so ill at the time. I was so proud, and now its gone. Hummpph.

How do I get my license back? Im glad you asked. The DVLA website states that I have to be completely symptom free of epilepsy for 12 consequtive months, and have this period of time monitored and evaluated by my neurology clinic - just like they are now.

Trouble is that "symptom free" doesnt just mean full blown grand mal fits, but the slightest little twinge or jerk too. So I could go symptom free for 11 months and 28 days, then on the 29th day I have a twitch, and Im back to square one again having to start the year over.

Major suckage. My mum is devestated over it too. I dont fully understand why, but she was really really keen for me to keep my license even though I never drove and had put a self imposed ban on myself once I started the drowsy meds all those years ago.

I guess I just have to see what the EEG says when its done. If its epilepsy then I have to hope that the increase in epilim that was proposed yesterday is gonna fully work as then i can have my license back in 12 months so long as the meds keep doing the job. And if its not epilepsy, and is purely drug after effects then Im pretty much screwed as I cannot live a life without the pain medication as I'll be in bed all day every day in unmitigated agony. It would also mean that my driving license would be in the hands of the pain clinic. And that - as you can probably tell from recent entries in here - is a very bad thing, and something that worries me. A lot!

J.
Depression: 8/10
Pain: 5/10

She was NOT happy at all, and so she's written a two page letter of complaint to the consultant about my experiences and his actions towards them. I dont know exactly what was in the letter, but I saw her write it out by hand ready for the secretary to type it up, and she was muttering away to herself whilst doing it and say "disgraceful" "not at all fair", and other bits like that when I kept adding on bits and pieces about other experiences with them.

She says that its obvious that the pain is the #1 cause of the depression. Anyone can see that (she says - and shes right), and so it is his actions thats lead to the NB. I actually despute its a NB as Ive had one before and at that time I had real bad agorophobia with it. But she said theres no clinical check list for what constitutes a NB, its just a saying thats put to chronic depression, sobbing, lack of sleep, suicidal tendancies, loss of appetite and all the other things Ive had lately. So maybe shes right. I just dont like that term nervous breakdown. I feel stigmatised by it.

Anyways, we now wait to see what happens from this letter. It will be interesting to see if the pain consultant brings the appt I have forward, or if he contacts me before the appt. Im betting he wont, but I hope to god I'm wrong because I need some pain relief, and I need it NOW!

Apart from this, I got my anti-constipation drugs changed. No longer on Four sachets of movicol twice a day. Im not on another one who's name ive forgotten already. Havent had any yet, as I dont pick up my scripts til tomorrow.

The pain meds have remained the same, but at least Ive got a fresh box of tramadol to fall back on now. I only get 50 per month, and theyll likely be gone in the first two weeks, but they do help a lot with tiding me over to the next dose of the main pain killer.

Aside from this nothing has happened. Ive not been sleeping. The pain has been pretty bad, fortunately it was bad when I saw her today too, so my GP saw me in full swing so to speak.

So, whilst its disapointing I didnt get an amendment to my PKs, there has at least been some action taken, and things are moving. I didnt really expect any change to the PK script, as shes altered it all she dare herself, its up to the pain doc to make any future changes now. The question is, how is he going to react to me next time he sees me because of this letter.......................................

J.
Pain: 6/10
Depression: 7/10

Im not gonna drone on in this entry. Im sure you all have better things to do than read my drivel, so I'll keep this short n succinct as I can.

Depression side of things have had their ups and their downs. On the whole its average. I would be lying out of my ears if i said things were still as bad in my mind as they were at the time of the last post. They arent. Ive been trying to focus on being more positive and day dreaming of throttling every consulatant I have when my appointments come around.

Speaking of Appointments, June is gonna be a cruddy month. I see FIVE different departments in June, and the dentist too for a filling. Joy rapture. Before all that though I see my GP on Monday coming. In the afternoon. Hope shes in a good mood cos Im going to be dumping a whole load of problems on her doorstep. Im even hoping that she can do the impossible and get my pain appt brought forwards. But we shall see.

The ostomy website has once again proved what a total pain in the arse the thing can be. Apparently theres journal entries flying around between some of the regulars that the chat room is now full of net-sex and support has been abandoned with newbies being ignored and clique's being formed. I shouldnt get so personally offended by comments like that when its aimed at a general area of the community but after sweating blood and tears over that site for well over 8 years now, its hard not to be hugely offended by it. especially considering that it is regulars who are saying these things. People who I have helped personally get through the bad parts of their ostomy related matters - be it themselves or family members - and to be honest the main reason I did decide to renew the site this year instead of letting it die when the hosts shut down the fucntionality of the boards etc, was so that the regulars could still hang out together. And then this is said. Ironically some of the people involved in the comments are some of the worst offenders of the "sex" related stuff in the chat room over the months, although much less so lately.

I do admit that certain aspects of the chat room that were installed for "fun" have been used and the major cause for concern lately is the !sex trigger. Ironically the trigger was disabled a couple of days before the comments were made. So, if i agree in part with what is said, what am I so angry about it? Well, it was said in public instead of in private with me when I couldve done something about it, or in private with another op. Its the equivilent of having a complaint with yer burger at McDonalds, and instead of taking it back for the problem to be rectified you take it to the papers and make it public. not very fair, especially when they know how much work goes into that site and its features, esp the chat room.

The fact of the matter is that there is always going to be idiots who spoil the atmosphere for everyone else. If someone has a problem with that they should either /ignore the offender, or contact an op and make their feelings known (its not as if Ive EVER discouraged people from contacting the ops over any concern or worry they may have). Either way, a chat room is an evolving beast, especially one that is suport based and aimed at a certain situation in someones life. So you always see the names and personality of a room change every few months regardless.

Anyways, I could care less about it all. I left the site a couple weeks ago for a break, and this has just refueled what was my waning desire to not go back. if I had to make a decision today, I would not go back. Ive done my bit. Let them sort it out amongst themselves a bit and see how they cope then.

As it happens Ive been working on a new Website this week, another support based one, but one that Im not going to be involved with at all other than the tech side if something needs fixing or adding etc. My friend Emma who I mentioned earlier has been wanting to set up a site for M.E. support as it is a condition close to her heart seein as shes suffered horrifically bad with it in at least the last ten years. So, as a surprise for her birthday coming in July I made a site up for her. It is very similar to the pain site I did in respects that its powered by a content management system (PHP-Nuke) so that users can add their own content - journels and such like - and more importantly Emma can add her own content to the main parts of the website without ANY HTML skills required whatsoever.

I finished the site this week. It only took three weeks. I'd left 2 months to do it, seein as how bad things had been lately healthwise, but the last week or semi-manageable pain problems has meant I got to spend more time on it than I envisioned, and so got it finished much quicker. I also think that getting to spend so long creating a site just for the fun of it rather than for the running of it, really helped the depression stay at bay. Although the depression has dropped back down again after the journal-back-stabbings I was told about yesterday.

Anyways, seeing as the site was finished and the space all paid up for it didnt really make sense to waste six weeks website hosting fees by waiting until July to give her the site, so I gave her it day before yesterday. She cried, bless her. Thats the only time I will forgive myself for making a friend cry.

So, watch this space for announcement of the site going live later this year, once all the content is written and final plans set into action for it. You have been WARNED!

Speaking of friends, my other friend (god that sounds sad doesnt it...) Andrew, has been put on treatment for high blood pressure. Its been really high lately, especially high for a 32 year old, so hopefully the medication will help it to lower. I know it certainly helped my Mum when she had to start taking it, and he's had the same first day reactions to the meds that mum had, so fingers crossed it will all be grand for him later in the year.

My folks are OK. Lucy is OK.

The summer blockbuster season is now upon us at the Cinema. Theres a fair few films Im looking forward to seein this summer, although Im not in any rush to see them as Im skint. Cant afford a cinema ticket for two, not that ive spent up all my cash on webspace and stuff, what with the ostomyland site being an unexpected expense, and then the birthday present space. :s The birthday space cost over £60 for the year. The two year deal was better value but of course cost more, and I had no idea if the site would be ultimately wanted or not, as it was a bit of a gamble.

Anyways ive gone off topic. Films I'd like to see are, Xmen 3, Poseiden, Superman Returns (for Kevin Spacey as LL, hilarious), DaVinci Code (of course, got to see that for the hype alone) and also I want to see Casino royale, although its not out til November.

Anyone who knows me will tell you that I was really against Daniel Craig as the new Bond. Especially after that fiasco of a launch they did for him on th eboat, which was more Health and safety than 007. BUT, having seen the trailer for the film now, its looking bloody good. Much more meaner and moodier than recent films, and he looks the part. It focuses on him as he is promoted to double-0 status, with M saying "I knew it was too soon to promote you to 00. You are going to have to leave your arogance behind you now". etc etc. looks really good. Check out the trailer if you can.

Wonder if they have the testicle torture scene in the film thats in the book.... :D lol.

Im back to playing World of Warcraft a little bit. ive started a new character now to compliment my maxed out Level 60 Human Alliance warlock. Im now focussed on a Level 15 Undead Horde Mage. The alliance are the good guys. The Horde the bad guys, so Im seeing the game from a different angle now, and although its the same physics, the same interface, and design and map etc, Im getting to explore previously hostile areas as friendly areas and so getting lots of new quests that I've not had to do before, and Im also getting to explore some areas that were simply just too hostile for me to go into as an Alliance character. Its also opening up a few horde-only dungeons, which will be a new experience too.

Roll on Xmas 06 when the expansion pack comes out. The level cap is raied to 70 so ill be back to sorting out my warlock again, and trying to earn myself a flying mount to replace my little horse. Poor Old Swan Vesta, he doesnt know it, but Ive got a glue factory all organised for him. But actually as a flaming demonic horse from hell, he might not stick around long enough to get to the glue factory... stick around... geddit! OK, I admit it, that entire sentence was made up just so i could make that gag.

And on that note I am going to go and rest up again. My butt is starting to ache more from sitting on this chair for so long.

Bye for now people.

Jason.
Pain: 4/10
Depression: 6/10

I really needed to get online to make a post in this today. I am feeling so bloody terrible today. I wasnt going to come on the PC at all today as I was in too much pain from yesterday and the first time I reformatted etc - it took five hours! But Ive had to come on, to talk things thru, and so hence ive spent the last hour putting on the bare minimum to come online here. God, I must be nuts.

My depression has plummeted. It wasnt great before but at the same time it wasnt bad. But this last 24 hours its really gone through the floor. Its the worst ive felt all year and Im struggling to cope with it today. I feel so sad. So alone and lonely. Totally empty inside. Yeah its that old loveless chestnut again piled on top of the old pain-all-day-n-night chestnut . I guess Im just gettin scared that there is no one out there interested in me, or likely to be interested in me, and that Ill never be free of this pain. Or rather that I'll never find said person. I used to think that being alone was something I could happily deal with "it dont bother me, not at all".... but well, im finding out it DOES bother me. And now Im starting to get terrified deep down.

As Ive said before I think in here, its not as if Im a prime catch. OK I can hold a conversation, and like to think that my personality is OK. But thats about it in the positives dept. No money. No job. No prospects of getting one in with my health. Hospitals and Doctors not remotely interested in my case for that to be reveresed. Ive never felt so isolated in my healthcare as I do right now, but thats another story.

My family is not the most tactile family in the world. We arent really big into hugging. The last time I was hugged by my dad was last year when I broke down. before that, I was a child I think. Same with my mum, we only really hug on birthdays n christmas'. The fact is that I have felt what its like to be loved. To know that when I got up in the morning I was thinking of someone specific and they were thinking of me. That we'd get together n just hang out. Not to do something special but just to be together. And we'd cuddle n hug n kiss, and I felt great and really really happy. I lost all that, a lot of it because I got ill, and Ive NEVER had it back since then. And its killing me.

I guess the level of my fear that I may never be that special someone to someone else, is measured by the fact that I signed up for a personals website. One response that got, and it was not good as Ive already talked about this week.

My life is passing me by. Im going to be 32 soon. I know everyone over 32 reading this will be disgusted I think that old. Its not that I think it old, its that as each year goes by my chances of getting those feelings back and finding love with someone is waning. And each year with pain is increasing. It will be 5 years this year.

This afternoon I felt so alone, and empty inside. I desperately wanted to cry to get this out of my system but I couldnt. I guess I hoped that if I came on here and wrote it all out it would depress me enough to find that release. The trouble with that is that it can backfire and you dont find the release and just make yourself feel worse. Well, im not crying. Fucking hell, this life sucks. I have a lot to be greatful for in my life and Im sure people think Im being selfish as there are people a billions times worse off than me, but to me right now in this situation, this is the worst I myself have ever been. I hate being like this. I hate myself for getting like this. I hate myself for being so weak and pathetic that I cant deal with this better.

The pain has been real bad this last 36 hours or so. All my fault though, I spent those five hours on the computer chair, and its crippled my butt. that just compounded what I knew about the fact that I couldnt return to work yet (im writing this by laying on the bed with the beyboard cable stretched). I cant stand the pain stabbing at my nerves and tissue in the rectal cavity. The slighest pressure on the anal wound (from sitting on it or whatever) sends a shooting pain up to that problem area, as its only about an inch or so inside my butt that the problem area is. So close. I dont know how much damage that bastard MRSA infection has done, but watching lumps of tissue fall out of my butt as I was showering in the hospital with the wound open scared me then, and now with the situation im in it terrifies me, as it will never be fixable. Never.

If it wasnt for my folks and a couple of friends, this afternoon I would have killed myself. I lay on the bed, thought it through, and had it all worked out exactly how I would do it. Id take 150mg of amytriptiline, and wait an hour. That would drowse me up a lot. I know that 150mg puts me to sleep in 90 minutes from when I was preseribed them and the fact that Ive been off them for a couple of years means I would be asleep first time - ironically they are anti depressants. At the 60 minute mark I drink a bottle of methadone over the half an hour remaining, and go to bed and sleep. Job done. No pain anymore. No depression anymore.

OK thats done it. Am bawling now.

Have been fighting a blockage all week, and only just got on top of it yesterday afternoon. The stoma is all black and blue now from brusing due to having to pass hundreds of rock hard marbles for three days. Most of which are too big for the stoma to manage and had to be forced out by applying pressure either side of the stoma - just like splatting a spot, only without the usual satifaction spotty teens usually get in gunging the bathroom mirror up.

Cont./...

The depression has been up and down a lot. Last couple of days its been up and Ive been ok. That combined with the fact that Ive had no real breakthru pain in a couple of days means that I have had a couple of reasonably normal days for once, and it was great. I got out for a while, saw some friends, went to a couple of places on May Day etc. Then like a cruel punishment its all back at square one. Major BT pain yesterday evening and this morning, and my mood has just sunk thru the floor. Ive said it before, and Ill say it again - its like someone is saying "here's what yer missing! You want it? You want it??? Well you can have it!" and I spend 24 hours loving what I see... then its "OK thats enough, you dont think Im gonna let you enjoy yourself too much do ya!!!!!!" and I spent a month in the pits of pain hell. It just fucking STINKS!

Ive had very little to do with the site lately. I must thank all the admins and ops on the site for doing so much in my absense. Without them the site would close. Especially Kathy who is a Saint with her own problems in life but marches on unpreturbed nevertheless.

For some reason my depression is exceptionally bad today - and this is very odd for a first day of a bad patch. It isnt normally this bad, but it feels as bad as the peak of the last six months when I was discussing suicide in here. I am not there by the way - at least not at the moment, but unless something spectacular happens with the pain clinic happens in June I might well find myself back at that cross roads as I cant continue on like this indefinitely.

I was saying to my folks the other day that Ive never felt so isolated in my health care as I do at the moment. Trying to get appt's with people is like trying to get thru to God with a can of beans a piece of string. Just not happening. Im STILL waiting for the pain clinic to contact me. I am tempted to phone up next week and leave a real bitchy message on their answer phone to see if they bother to reply to that, because they sure as hell dont reply to polite messages asking about cancellations. OK they dont need to respond to all of my messages- five were left - but at least they could phone once and say "ok we're getting your message, we cant reply ro each one, but we are getting them and as soon as an appt is available on a day youve enquired we will of course tell you". But nooooo, they just ignore you despite saying they WILL get back to you! Its a huge fuckng joke that place. Somehow I think that if the people who worked there were in the same pain as their patients are in, then they too would not be satisfied with that level of "care". Not to mention the nurses who promises to phone back within 24 hours with updated medical details and NEVER does! And then makes an appointment with the WRONG person!!!!

I dont know why really but Ive been gettin more and more concerned about my parents mortatlity. I am terrified of losing them. Dad esp isnt great at the moment. Mum isnt either, but I dont think its anything untooward other than being older now. But dad he is lookin so pale and gaunt in the face these days. Every day he seems to struggle more and more without his walking sticks, and his memory is definitely getting very much worse. Some days he's sharp as a tack. Other days he cant work out the change he needs for the machine. I would miss them so much, and I dont know how I would manage without them. That is very selfish of me I know. I cant rely on them forever, hell at nearly 32 I shouldnt be relying on them AT ALL! But I am.

Ohh yeah, lol. I got a reply to my Yahoo Personal ad. Jeez. I wont go into details as I think it would be very offensive of me to make fun of the person who did reply, as she is no doubt in the same boat as me and doesnt deserve it when shes just trying to look for company too. But lets just say that the match was completely wrong, and she definitely hadnt read my profile well enough, or had decided to just ignore certain parts. Thing is that I felt really bad turning the request for contact down. :(

Im hoping to get out this weekend, albeit just for a few hours. A good friend of mine has asked me if I want to go to an Antiques fair with her and her mother. Ive provisionally said yes, will see how I feel on the day. Emma is a good friend. She has lots of her own problemsin life, but still has time to listen to me prattle on, and is always asking if I want to go here or go there, or do this or do that, for something to do. She means a lot to me, I think Id prolly be lost without her too now. Shes great. And shes always buying Lucy toys, which always goes down well with the fuzzy one.

Poor ol' Lucy. Shes not been herself this last couple of weeks. Shes come out in a really nasty dermatological rash. We knew that Westies can suffer really badly with skin complaints - they even have their own skin complaints named after them! - but in her ten years shes never really had any bad spells. Just the odd little spot here or there that has snuck up on her, and a day of cream solves it. But not this time. This time she has had a 2" square patch of a rash. And this time it was under her fur. So, we've had to cut her fur back and deal with the rash on her behind, next to her tail. Needless to say its been really itchy for her, so shes been carpet surfing for England all week. Every hour or so Ill hear this grunting noise and I look around see her flying around the room on her butt with her back legs sticking up in the air, trying to scratch the itch that is causing her problems. Bless her. Shes been really un happy with it, theres been a definte mood change in her lately, but thankfully as the rash has been improving (were getting on top of it) shes been getting back to her usual self.

Anyways its 9pm. Im gonna quit this here for tonight. Will maybe post again soon, depending on what happens and how things go.

J.
Pain: 5/10
Depression: 8/10

Anyways, thanks to everyone for their patience during this time. Its probably just as well this journal was unavailable during this time as chances are I'd have been swearing my ass off and making liablous statements against my previous web-hosts. :D Heh.

Right, well... I'll make a proper whinging post like always later on when Im feeling a bit less tired, less stressed, and more comfy.

Bye for now folks.

J.
Pain: 5/10
Depression: 5/10 (Peaked at 9 while board was down and I was gettin daily mails demanding its reinstating).

Continued.... (click link below)

The pain hasn’t been too bad this week, although last night it really had a go at me. It was one of the worst breakthrough sessions I’d had in a long time and it seemed never ending. It was mid-morning this morning before I got any length of time free of breakthrough pain.

On Wednesday the bag dropped off. Its so rare that that happens to me, but it always seems to manage it at the most in opportune times. This time it was while I was at the White Rose shopping centre, and of course I didn’t have a full complete change on me. Fortunately it was as we were leaving to go home anyways so it was no major inconvenience but damn did it put a downer on the trip out. Have you ever had the feeling that you are cursed? Or jinxed? Or Hexed? I must admit I’m starting to wonder about it.

For some reasons the number of visitors to the ostomy site has rapidly grown in March, and I don’t know why. Maybe its been advertised somewhere without my knowledge, or maybe just more people are finding it via search engines, but whatever is the reason the average daily hit rate has gone from 2000 – 2500, to 3500 – 4000. Also the chat room seems to be getting very busy while I’ve been away too. It’s regularly breaking the 21people barrier during weekday evenings, which is more than there’s been on many a Saturday meeting in there over the years, and when I’ve been looking in overnight (UK Time) its good to see that there’s quite a few people in there still talking away in the US Evening time. It looks like the chat room finally is a true 24/7 venture, so thank you to every who is a part of it for making it what it is, and especially to the Ops and HH’ers who give up their time freely to help others for little or no reward and regular abuse.

The pain getting bad again so I am going to say goodbye for this post.

J.
Depression: 9/10
Pain: 6/10

Ive not left any journal comments for quite a few weeks now mainly because of two
reasons. 1) Just not had the energy or interest to do so. 2) Im beginning to question
just how much it actually helps me, even the private journal that I keep to myself and
no one else reads.

Cont/...

Tried to get my appt with the Pain Doctor brought forward a few weeks ago, and
ended up with an appt three weeks later than the one I already had set up in May. So
now, I’m having to wait until June. The reason is that the appt in May was NOT for
the Pain Doctor but for the useless nursing team who can do very little without his say
so. I saw the nurse last time and she promised she would phone me next day with
confirmation of the pain plan we had (which was actually to do no nothing but take
extra paracetamol – which did nothing of course when I tried it). She promised me at
that time that the next appt would be directly with the doctor because things were
going so bad. It turns out when she made the appt for May it was NOT with the
doctor. Now, I saw it say so on the sheet that it was for him. So, has he changed it and
tried to fob me off on the nurse, or has the receptionist misread. Neither would
surprise me as I’ve no confidence in either of them. So anyways, the first appt I could
get with him in person was mid June. In the meantime I was to phone daily for
cancellations as they don’t keep a cancellations list unless you have cancer. I’ve
phoned five times over three weeks, left five messages and have had no reply.

I try so hard not to unload all this on my friends. I guess that’s why I unload on here
or in the private journal or whatever, depending on my mood. But there’s only so long
I can say “yer alls fine thanks” when they know it isn’t and can see from my replies
that it isn’t. So I ended up telling them exactly what’s wrong. I have very precious
few friends in RL now. But worryingly it seems like I’m losing touch with some of
my most important net friends too. It’s really upsetting to see that two of my closest
best net friends no longer reply to my mails for weeks, and avoid me on Yahoo and MSN despite
being on the net elsewhere as ppl I’m talking to at the time tell me they’ve seen them.
I guess Ive gotten them fed up with my complaining. For all I know they could’ve
blocked me from the messengers system or their mail box. It’s really upset me, and so
now I’ve vowed to never talk about all this again to friends online, and Ill keep it all
inside and in the journals. I cant afford to lose anymore friends.

I got an email from a former college friend of mine. She sent me a mail to say she was
buying a new house, and is more than likely engaged etc and has a fabulous steady
career with a great wage. Im really happy for her. But it slayed me to read it. I felt
such a failure. Shes exactly where I wanted to be at that stage of my life – shes 3 years
younger than me. And where am I? I have no home of my own, still with my folks. I
have no money cos im on the social and living from payment to payment, a lot of the
money from which goes to my folks for rent. I have no job, no one will employ a
opiate doped chronic pain patient. I asked an agency a month or so ago what the
chances were of my getting a place on their books to do temp work on data entry or
something, and they just listened, and said they wouldn’t take me on and besides I
shouldn’t bother, best to stay where I am so I don’t lose entitlement to social as it’ll
take weeks to get back on it. I’ve no family of my own, kids etc. Not married. Don’t
even have a girlfriend.

Got Stoma problems too again. Damn thing keeps blocking, and of course the surgeon
isn’t interested, just wants me to take high powered laxatives forever. But I was
always told that taking laxatives long term is very bad for your system and my Doc is
reluctant for me to rely on them all the time.

It is just all too much. I cant deal with it all. Dammit im even fighting back tears
writing this. Its pathetic. God its all gone spectacularly wrong somewhere, and with
the all the medical depts falling over themselves to get away from me as quickly as
possible, and my having clearly offended some friends by being who I am, I feel so
alone though all this. Im not even going to get started on how lonely I feel every
evening. The folks are in bed by 8pm, sometimes even 7pm, and then Im awake til
midnight with no one to go out to see, or whatever.

The amount of fear I have in me now is unreal. I just don’t know how I am going to
face the remainder of this year, let alone my life. Earlier in the week I was so tempted
to just drink the full bottle of meth. I caught myself just starting at it in my hand when
id finished taking my dose. That scared me too. I always promised myself I’d never
get to that low level again, but I can see I’m following the same footprints in the
ground that I tread last time around.

One day something good may happen that gives me enough energy to keep going for
longer. Something fantasticly brilliant. Or maybe it could go the other way, something
else goes wrong and I just snap and have enough. But what can I do? Nothing; im
fresh out of ideas, strength and hope.

So I just keep plodding on. It’s all I can do, and maybe dream about getting that hot
date with that hot woman who works in the same department as me in this top job Ive
got, and take her home to my own pad to wine and dine. And then who knows where
it could go…… Yeah well don’t even get me on the subject of how long since the last
time I had sex.

Plodding. Plodding. Plodding. Its all I can do. And its no where near enough.