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Dude84

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I am not sure if this location is the "correct" area to place this. If it is not, then please do move it to a more appropriate location; somehow, I felt like placing such in the "Announcements" section would be an exercise in egotism and nothing more. Anyway...

---

At approximately 0420 this morning, I asked Lukie in the IRC channel to ban me, i.e. at my own request. After some hesitation, he oblidged.

I would like to state that, unlike on previous occasions when I may have advocated an attributed stance of "isolation" to the actions of another person or persons, in this instance, such is inapplicable. In essence, i'm not blaming anyone.

Additionally, I would be grateful if this thread is not perceived as a plea for sympathy. Despite some believing sympathy and/or pity to be useful to the individual(s) concerned, such emotions only serve to appease feelings held by the person "giving" such sympathy and/or pity. And in any case, I would like to believe i'm not quite that pathetic.

---

Right, 'enuff waffling.

At the moment, i'm quite possibly not psychollogically stable. Things are about as bad for me at the moment as they could possibly be, short of death. I am about to be evicted because someone I once called a friend has not paid any rent for this entire year and does not intend to, despite him fraudulently obtaining money from myself in respect of my "share" under the guise of such money being used for such a purpose.

My health, haha. It's better than I don't even go there, suffice to say that a few months ago I was walking unaided.

Consequently, things just do not "add up" and I cannot, no matter how hard I try, cause them to "add up", psychologically. I have noticed recently that in the two IRC channels I regularly participate, that I have been conversing mostly sporadic distribes of non-sensical rubbish. If this is not the case, I apologise - maybe such should be taken as an indication as to how "screwed up" I am at the moment.

As a result, I feel it beneficial that I don't participate in either of these two IRC channels, one of which is #adisc. I feel that I shall "say" something truly retarded and just cause more problems, quite possibly moreso to myself than anyone else present.

Direct interaction with people doesn't seem like such a good idea right now. Whilst I shall remain on the forum, I don't think i'll be posting too much. In any case, i'm awaiting an imminent hospital admission for an investigation into my current health situation, or lack of health more accurately, during which time I shall somewhat obviously have no internet access.

Finally, I apologise if this distresses or annoys anyone. I have attempted to explain in the best way that I am aware. If it seems non-sensical, I apologise again similarly.

Please do not consider this a personal attack on anyone, it isn't. Some people I have met in real-life from this forum have been helpful, kind and supportive.

I guess I shall be back if I get through this, at some point, but to paraphrase an old quote "don't hold your breath".

-Ends-
 

Mitsukuni

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I know how it is with health things, man, it's tough stuff. But we're here for you :hug: just remember that.
--Evan
 

Trevor

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Hope things sort out to the good. For what it's worth, your post made perfect sense, I'm just sorry that things came to a point where you thought it necessary.
 

Peachy

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I hope the doctors (those with a medical degree!) are able to figure out what's causing all those problems and find a treatment...quickly!

Get well soon! :grouphug:

Peachy
 

Martin

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Good luck and get well soon. :grouphug:
 

Dude84

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Update [as it seems right to do so]...

Things appear to be improving gradually on the medical side of things; after many telephone calls to three different hospital extensions (some of which seemed desperate to connect me to a fax machine.... grrr) I have finally attained a bed at the neuro assesment unit on Tuesday, at the Leicester General.

Quite what will happen to me there i'm unsure of, aside from the obligatory blood tests, poking/proding and CT/MRI scans i'm used to by now. The hopeful part of me believes that this will lead to some sort of remedy, even if it is merely stabilising whatever is going wrong. The other side of me wonders what will happen next.

Little has changed on the housing front unfortunately. It looks like i'll still have to go to court to try and attain an extension for as long as possible. Quite what will happen if i'm still in hospital on such a date is as of yet, unknown!

Thanks to the people who have replied here. It is appreciated. *Hugs*
 

Mesmerale

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Stick with the hopeful part.

I know you'll get better.

If you've got nothing better to do for a little bit, why not buy this book?

The Secret

It's a little hard to believe -- I'm still having trouble getting into it --, but there are quite a few parts that make a lot of sense to me.

Like I said, if you've nothing better to do...
 
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Hey Markdude,

I'm really sorry to hear about your health problems, and I can completely sympathize with you there, although I'm not in a wheelchair yet, it's a definite possibility in my future if things continue the way they are. (Hopefully a long way off though).

The problems with your housing are unfortunate, but you can work around it. I wouldn't trust another person to help you with your financial stuff though, unless you can truly trust them, or if you have some sort of a legal agreement that outlines just what they can and can't do for or to you. That's just to protect you and your rights and your property if necessary.

Have you considered contacting a lawyer over this? And do you have any family that can help you? I'm not familiar with your personal situation, I've only just read your postings here, but your family could and should help you with this. It almost sounds like you've been abandoned by them all. I hope that's not the case.

If I may ask, what health problems are you having that has caused you to be wheelchair bound? If you would rather not post that here, I understand, maybe you could PM me if it's something you can talk about. I'll also understand if you don't wish to discuss it at all. Forgive me for asking in that case.

I hope you get some answers while you're in the hospital, and even some hope of recovery. Good luck to you, my prayers are with you.:hug:

Rick
 

Dude84

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Thanks for your post; all thoughts/comments are appreciated.

As for the current situation, i've been in the neuro unit for just over a week now, and today i'm finally getting an MRI (w00t! - after waiting for what seems like an eternity), although for reasons unknown such is only an MRI scan of my head and neck, and not my spine, which is probably the issue here.

Aside from that, i'm having physiotherapy to try and improve the limited amount of walking I can manage, but it is yet to have any effect, and has left me in an incredible amount of pain, beyond any i've ever experienced before in my life (aside from the immediate aftermath of the neuro surgery I had before).

It's likely i'm still going to be here until next Tuesday at least - at that point I shall have been "enjoying" hospital care for two weeks. Still, trying to be optimistic/humourous at least I have not had to deal with a bed, cook, or clean. However, the word "sleep" took the last plane out of my vocabulary some time ago.

What remains, aside from some medical conclusion, is further home adaptions to remove some of the issues i'm having with various things, and probably another wheelchair assesment, especially if something does appear to be wrong/problematic with my spine; in such case, i'd require better/specialised spinal support.

That's about it. I guess i'll try and stay positive, despite the feeling of being institutionalised!
 
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Thanks for your post; all thoughts/comments are appreciated.

As for the current situation, i've been in the neuro unit for just over a week now, and today i'm finally getting an MRI (w00t! - after waiting for what seems like an eternity), although for reasons unknown such is only an MRI scan of my head and neck, and not my spine, which is probably the issue here.

Aside from that, i'm having physiotherapy to try and improve the limited amount of walking I can manage, but it is yet to have any effect, and has left me in an incredible amount of pain, beyond any i've ever experienced before in my life (aside from the immediate aftermath of the neuro surgery I had before).

It's likely i'm still going to be here until next Tuesday at least - at that point I shall have been "enjoying" hospital care for two weeks. Still, trying to be optimistic/humourous at least I have not had to deal with a bed, cook, or clean. However, the word "sleep" took the last plane out of my vocabulary some time ago.

What remains, aside from some medical conclusion, is further home adaptions to remove some of the issues i'm having with various things, and probably another wheelchair assesment, especially if something does appear to be wrong/problematic with my spine; in such case, i'd require better/specialised spinal support.

That's about it. I guess i'll try and stay positive, despite the feeling of being institutionalised!
Hey!!!!! WAKE UP Markdude!!!!!!
*Shakes your shoulder until you acknowledge me*,

I hope that your MRI results don't take as long to determine as my last one did. It was close to a week before I got the results from my neck MRI.

Yeah, the one good thing about the hospital stay is that you can enjoy having someone else wipe your butt and put a new diaper on you, LOL! :)

I'm sorry that your physical therapy is hurting you so much though, but unfortunately from personal experience, that's normal.:sad: I'm going to be going through that next week after my 2nd neck surgery, and I really hate that part, even though I know it's supposed to improve my life later on down the road.

What kind of neuro surgery did you have? Also, if it's your spine that's the problem, what are they going to do about it? You mentioned that your wheelchair isn't very supportive, so how do they plan on changing that, because you'll still need the chair, right?

I hate to be so nosy too, but if I can ask, how do you manage to change your diapers from a wheelchair? Are you able to stand to do that? I only ask because a wheelchair is probably in my future, though hopefully a long way off. But you never know, I may need it after this surgery on Tuesday, God forbid.

And as for sleep? LOL!!! That isn't allowed in the hospital you know. If they catch you sleeping, they immediately come in and draw blood, or shake you to ask you if you were asleep, or want to give you a shot or something. What the h*ll were you thinking?!! SLEEP!!! GEESE!! You're 'sposed ta do that before you go in and after you get out!

Honestly though, I hope you do manage to get some quality sleep. It really is necessary for the healing process.

Keep us posted, I at least would like to know what's happening with you.

Good luck, and take care,

Rick
 

Dude84

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Hey!!!!! WAKE UP Markdude!!!!!!
*Shakes your shoulder until you acknowledge me*,

I hope that your MRI results don't take as long to determine as my last one did. It was close to a week before I got the results from my neck MRI.

Yeah, the one good thing about the hospital stay is that you can enjoy having someone else wipe your butt and put a new diaper on you, LOL! :)

I'm sorry that your physical therapy is hurting you so much though, but unfortunately from personal experience, that's normal.:sad: I'm going to be going through that next week after my 2nd neck surgery, and I really hate that part, even though I know it's supposed to improve my life later on down the road.

What kind of neuro surgery did you have? Also, if it's your spine that's the problem, what are they going to do about it? You mentioned that your wheelchair isn't very supportive, so how do they plan on changing that, because you'll still need the chair, right?

I hate to be so nosy too, but if I can ask, how do you manage to change your diapers from a wheelchair? Are you able to stand to do that? I only ask because a wheelchair is probably in my future, though hopefully a long way off. But you never know, I may need it after this surgery on Tuesday, God forbid.

And as for sleep? LOL!!! That isn't allowed in the hospital you know. If they catch you sleeping, they immediately come in and draw blood, or shake you to ask you if you were asleep, or want to give you a shot or something. What the h*ll were you thinking?!! SLEEP!!! GEESE!! You're 'sposed ta do that before you go in and after you get out!

Honestly though, I hope you do manage to get some quality sleep. It really is necessary for the healing process.

Keep us posted, I at least would like to know what's happening with you.

Good luck, and take care,

Rick
Lol, sorry. *Gives acknowledgement* ;-)

At the moment, the only incontinence issues I have are urinary, and very minor; i'm sorry if anything I said earlier was misleading, but I wear mainly for recreational purposes. The only issues I have is a *very* slight leak when changing between certain positions.

I haven't been diapered in hospital, although I have wet the bed twice; once as a result of a sleep seizure, and one for unknown reasons. On both occasions it wasn't a huge amount and I don't think anyone noticed (certainly, nothing was said about it).

Unfortunately, as much as i'd like to be diapered in hospital I can't bare the embarassment factor of bringing it up. I also know that unless I provided my own, they'd get the least necessary product possible for me, possibly one of those crappy insert things with pants. Plastic on my skin = no, and they're not real diapers anyway.

Physiotherapy is necessarily painful I accept, although it does have some use. The neurosurgery I had was a decompression, to remove an obstruction which was placing pressure on the flow of CBF between my brain and spine.

In terms of wheelchairs, they can change the physical structure of the chair, in terms of positioning, size, posture, incline of the seat back, amount and style of padding on the back and seat, etc. They are quite customisable, hence the expense to whomever provides them I guess.

As for changing in a wheelchair, it's a bit like removing your jeans whilst sitting on your ass (If anyone doubts this, just try it - sit down, and do not move your legs at all, and try to remove them) - difficult but not impossible. Nevertheless, if I was double-incontinent it may be harder.

You're right about sleeping though, it's just not going to happen. At night there are always interruptions, and during the day it's always noisy. Last night at 6am, the guy opposite me (MS-related problems) was unwell, and there was quite a commotion. I gave up and went for a cigarette, then went back to bed and tried again, only to be awaken another hour later for breakfast!
 

Dude84

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Update: It appears i'm going to be discharged tommorow (Monday) as there is nothing else they can do for me here without waiting for further tests to be done, which apparently may as well be arranged via outpatients, as otherwise i'll just be lying around here - trying and failing to sleep. >.>

In the meantime, i'm still regularly in a level of pain which is far beyond my threshold; I believe its my own sense of outlandish determination that is preventing me from just giving up and dropping dead (to be blunt!). :-/

I'm not particuarly happy about the way things are progressing, especially considering how I appear to be a medical curiosity (you will not believe the number of doctors of various 'ranks' who have "examined" me).
 

Lil Snap

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How is it that all these doctors are failing to properly manage your pain?
 

Dude84

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I've been thinking about that. There are several possibilities, including prioritisation of ever scarce resources according to immediate need (e.g. Urgent life-threatening, Urgent, Emergency, Soon, Wait, etc), lack of equipment/staffing generally, the cost of anything, a general reluctance to prescribe ever more drugs or do anything, and my inability to properly express what is going on.

I find it difficult to go into sufficient/applicable detail to describe everything that is happening to me, which doesn't help. I'm not sure what else to say.
 

Lil Snap

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I guess the only thing I can say is to make noise, be heard, SOMETHING. There is a saying here "the squeaky wheel gets a greasing". It's true. If you don't tell them what's really going on with your pain, nothing is gonna change. If you tell everyone, repeatedly, constantly, certainly that you are in pain and aspirin isn't easing it, something should change, but if not, everyone should know about it, and that you aren't happy. Sometimes it can seem like a herculean task to stand up for yourself, especially when you are down, but when you are down is when you need to work the hardest to protect yourself.

Best Wishes through all of this.
 
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Update: It appears i'm going to be discharged tommorow (Monday) as there is nothing else they can do for me here without waiting for further tests to be done, which apparently may as well be arranged via outpatients, as otherwise i'll just be lying around here - trying and failing to sleep. >.>

In the meantime, i'm still regularly in a level of pain which is far beyond my threshold; I believe its my own sense of outlandish determination that is preventing me from just giving up and dropping dead (to be blunt!). :-/

I'm not particuarly happy about the way things are progressing, especially considering how I appear to be a medical curiosity (you will not believe the number of doctors of various 'ranks' who have "examined" me).
I've been thinking about that. There are several possibilities, including prioritisation of ever scarce resources according to immediate need (e.g. Urgent life-threatening, Urgent, Emergency, Soon, Wait, etc), lack of equipment/staffing generally, the cost of anything, a general reluctance to prescribe ever more drugs or do anything, and my inability to properly express what is going on.

I find it difficult to go into sufficient/applicable detail to describe everything that is happening to me, which doesn't help. I'm not sure what else to say.
Hey Mark,

I'm sorry to hear that you still haven't been treated for the problems you're having. I do hope that they can figure it out soon, being in pain really sucks, as I know from personal experience. As was already mentioned too, you need to be more vocal about your pain in order to get the right pain relievers for it. If you don't say anything, they will just think you aren't in pain. So open your mouth and scream!!!! LOL Don't let them shove you out of the way without taking care of your problem.

Good luck to you buddy.

I go into the hospital in just a few hours myself. you can believe that I'll let them know about my pain! See ya when I get out.
 
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In the meantime, i'm still regularly in a level of pain which is far beyond my threshold; I believe its my own sense of outlandish determination that is preventing me from just giving up and dropping dead (to be blunt!). :-/

I'm not particuarly happy about the way things are progressing, especially considering how I appear to be a medical curiosity (you will not believe the number of doctors of various 'ranks' who have "examined" me).
How is it that all these doctors are failing to properly manage your pain?
Pain management/treatment is very, very difficult to "get right." However, I can appreciate (vicariously, though my dad) what you're going through insofar as the "medical curiosity" (AKA "pincushion"). He went through A YEAR of testing, blood draws, fluid draws, spinal tap, nerve checks, muscle checks ... EVERYTHING. They ended up giving him a differential diagnosis (which they knew to be wrong, but had nothing else to offer) of fibromyalgia.

And now it looks like he may be going back (20+ years later) down this road. I've digressed only slightly; pain is something that is very difficult to nail down as it can come from many causes is subjective to boot.


I guess the only thing I can say is to make noise, be heard, SOMETHING. There is a saying here "the squeaky wheel gets a greasing". It's true. If you don't tell them what's really going on with your pain, nothing is gonna change.
And, yes. With the understanding of the above, YOU need to make certain that you are your best advocate for your treatment.

However, this depends on having at least one confederate; if you can convince your primary physician there (or another member of medical staff) that there is an immediate and pressing need to examine treatment options for you that WILL WORK, then your odds increase as they become your "voice" within meetings and brush-contacts you'll not get to have.


That's a long-winded way of saying that I hope it improves for you. You deserve to be left pain-free, and hopefully they're just about finished poking and prodding and will just get down to it.
 

Dude84

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I never expected this thread to draw so many responses; at least it appears that it has created some kind of logical discussion outside of, and not just centred on me, that's good. :)

Back to me; it appears, and i'm being treated on the basis of results from tests conducted so far (such as the Lumbar Puncture) that I have Multiple Sclerosis. For those who have no idea what this is, try the Wikipedia link below which goes into a fair amount of detail. I had an appointment with my GP on Monday, whom referred to the letter from the hospital consultant regarding this diagnosis.

I use the phrase "appears" as I don't believe they are entirely certain, although it would fit with the symptomns i'm currently experiencing. It is however, still being investigated further, with some tests pending.

Aside from that, I don't have much more to say. If anyone here has MS or anything similar though, feel free to drop me a line. It is a little scary, facing the prospect of that.

--
Multiple sclerosis - Wikipedia, the free encyclopedia
 
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