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May 27, 2006
Culture? Thats a mouldy growth innit?
Had a very interesting and fun night last night. Emma and i went to the theatre to see a Ballet Ireland production of Tchykovsky's best bits. It is my first time to live ballet, and only the second time Ive ever sat down to watch it, and I must admit that I actually enjoyed it a lot. They made it accessable to the complete ballet doofus (ie me) as well as challenging the established ballet fan and traditionalist by performing their own improvisation/interpretation of some more recognised pieces, such as a very haunting and at times disturbing protrayal of Sleeping Beauty (ill never think of heavy breathing the same way again!) and by altering the classic ending of Swan Lake by not killing off both the swans and leaving Odette alive n well at the end.
Cont./...
There were a few errors in it - maybe first night nerves as it was the first night at the theatre in a two date run, but then again there has been numerous dates elsewhere before this so that shouldnt really be the case. Maybe the size of the stage threw them a bit as it is a tiny theatre here. At one point a dancer seemed to stumble or slip as she came up to the end of the stage, like I say, maybe shocked at the fact she was running out of stage to dance on) and in The Nutcracker a girl dropped her feather duster thing that she was waving. Also - ive been reliably informed by Emma - one of the dancers missed a jump and got thrown by it for the rest of the piece. Cant remember what piece it was now as I dont have the program to hand to look it up. But it was early in the first act anyways.
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
Posted by Jason at 10:24 AM | Comments (4)
May 25, 2006
Heres my nuts... please form a queue if you want to kick them
Well then. What a day yesterday was. Ever heard the expression "kicked when already down"? - that is how I feel today, after seeing the neurology clinic yesterday. Ive been given another kick in the nuts, hence the title to this entry.
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.
Ive contacted the DVLA (Driver and Vehicle Licensing Authority, for my non-UK Friends), and informed them of the situation. I now have to fill in form Ep1 and return my drivers license. I am NOT a happy bunny today. OK, I dont own a car, and Im not insured. Ive not driven since I passed my test, so it could be so very much worse. BUT when I get to be fit enough to work again having no license to drive with severely limits my chances or employment, and also the radius of the area that I can seek employment in.
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
Posted by Jason at 09:17 AM | Comments (1)
May 22, 2006
GP Appt. Outcome
Finally saw my G.P. today. All in all im satisfied by the outcome, its about as good as I could have hoped for. I wouldve liked to have seen more happen, but her hands are so tied, I cant blame her at all, its the consultants i blame and so does she. Even though I promised myself I wouldnt cry in her office, and id be a macho male, I lasted only about 3 minutes before my voice croaked and I lost it. She says im having a nervous breakdown and blames my consultant and the pain clinic for it.
I told the Gp about the situation i'd had with trying to get an appointment with the Pain Clinic and specifically about a) seein the consultant himself instead of the useless pain nurse who is impotent when it comes to making decisions on my case - or so it seems to me. And b) the fact that theyve ignored all my messages and not called when they said they would to discuss my pain killer dosages.
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
Posted by Jason at 07:29 PM | Comments (0)
May 20, 2006
Still here
Well, we're now.. what.... 2 weeks on from the last post, and Im still here. Still not seen any doctors or surgeons or specialists, cos Im STILL waiting for the appointments to turn around. Just as well things arent bad eh?
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.
Pain wise, things are the same as theyve always been. The daily achy throb is there, all day, every day, as usual. However fortunately breakthrough pain hasnt been quite so bad this last week, which has meant Ive been able to concentrate more on ignoring the daily ache, and actually able to get out of the house a bit. I've not been far though, just around town with the folks, or with Emma, or over to her house, or going to the supermarket for some food etc. Im hoping to go to the theatre on Friday coming, fingers crossed. I had to cancel last time, so i dont want to have to do that again. Its a local theatre as well this time so thats good, it means that I'd have to be feeling really really bad to not be able to go. Which is always possible, but im trying to keep positive.
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
Posted by Jason at 10:15 AM | Comments (1)
May 07, 2006
Suicidal tendancies???
This post talks about suicide and I recommend that you dont read it. Period. If you really must read it, then click on the link below to access it.
Ive been having really bad PC problems this last coulple of days. Ive had to reformat and reinstall my PC TWICE now, and thats a real pisser. As it stands right now Ive just finished the second reformat in two days and i am running in the bare minimum software. Namely windows XP, mcaffee virus scan n firewall, crappy old IE browser, and my network card drivers so that I can access the net thru the router. Its all fun fun fun.
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.
Posted by Jason at 09:10 PM | Comments (3)
May 05, 2006
Same ol' same ol'
Another friday. Another weekend. Anothe rblog entry - albeit the first in about what... six weeks? whoops, My bad. Just havent felt like talking about stuff.
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./...
.../ 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
Posted by Jason at 08:31 PM | Comments (0)