Diary of a Life with Chronic Pain v2.01

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