triple think:
I'm not sure what you expect me to say here. Sounds like you belong to another faith. The almighty church of brain chemistry.
I can help someone if they are prepared to fight for their freedom, but if they have put their faith in the health care industry and in pharmaceuticals then they are simply meat for the demons in my humble experience. In my experience a person has to abandon faith in that system, place the faith in their own being and knowing that change is ongoing they must have the will to overcome this kind of oppression or else they will simply be a slave to this stuff for the rest of their lives. It is hell on earth, I know, but you asked for my opinion. This would then usually be where some psych professional picks up on my thoughts and posts all of the usual psychobabble and we can then go on to fight to the death. So, I'll pause here to let them get on with it then...
Sorry for the really late replies; recovery from surgery hasn't been going well, and the original problem they did surgery for is causing a lot of pain and problems. I've been trying to look after myself and had about a month of severe sickness all the time, before they managed to stop that. And I wasn't up to doing anything.
I would like to get off all the medications, but I find I have to rely on them at the moment.
With regards to my mental health medications, it quite literally gets very dangerous if I stop taking them. I don't know how to get past that, or whether I can manage to control my mind enough to prevent such things happening. The consequences of it going wrong scare me enough that I am quite happy to continue taking my mental health meds for the rest of my life if need be, and that's certainly what the doctors are looking at.
With my many health issues, I don't really have anywhere to turn other than medical research and advice.
I haven't found another Buddhist with my main medical condition, it's fairly rare. I admire your ability to turn pain into bliss. I really wish I could do that, and I'd love some pointers on how to do it.
The problem is that I can see the very real effects of my medical conditions. I move my arm, I dislocate my shoulder, elbow, wrist, maybe ribs too. I use a lot of Medicine Buddha mantras when I'm in a lot of pain, and it does help. I also do whatever the practice is called, where you take the pains of the rest of the world onto the pain you're experiencing at the moment. Though I feel quite guilty about that sometimes; it helps reduce the pain, and that isn't why I'm doing it. I'm trying to help other people, not myself.
I know that I DO feel physically, and mentally better when I'm meditating properly, and for some reason I'm not doing that at the moment. I know, it's stupid. I feel better when I do it, but I don't do it. Well, how many people eat junk food that they know makes them feel like rubbish?
I guess it's kind of similar.
It's weird because when I get back into it, I find it easy to do anyway. It's just when I've had problems and stopped doing my practice, that I find it harder than ever to get back into it. Not sure what that is, but it's something that's affected me my whole life. And I have plenty of disruptions to practice thanks to my health.
I know, logically, that practice can free my body of all ills. But I find it very, very hard to give myself up to that.
I think the major problem is the mental health issues. The really bad stuff scares the hell out of me, and I don't want to ever be like that again. So the thought of not relying on the medicine, is really a big thing. Whenever I've not been on the medication, or when it's not being absorbed properly, I have such terrible things happen, that I am so loathe to stop the medication. And yet, I really don't like being on it all. My overall plan is to eventually be able to control my mind enough to be able to at least drop it down to just a maintenance dose, if not come off it all altogether.
But I don't know how to do that.
The pain's a big thing too. I feel pain differently to other people, because of weird brain things thanks to a couple of my conditions. I feel a lot more of it than normal, and my brain reacts in odd ways.
I spent my whole teenage years in a lot of pain, and the doctors had given up on what was wrong because they couldn't find anything (they weren't looking in the right place... and oddly enough my rheumatologist back then is known to my current Ehlers-Danlos consultant in London, and he was surprised when I told him my old rheumy hadn't found the condition... so who knows!). They ended up telling my parents that I was just playing up and it was all in my mind and I wanted attention.
This caused quite a lot of problems, not to mention the fact that by the time I was 16, it was really painful just to walk, and I had absolutely no help at all because they'd written me off because they couldn't find what was wrong.
It caused a lot of problems between my Mum and I as well, as she believed them rather than me, so my releationship with pain is a pretty messed up one.
I'm in pain all of the time, so I have managed to learn to cope with quite a lot of it.
However, the pain I've been getting recently, is worse than when I broke my back, and it just knocks me senseless it's so bad.
I've found that I'm able to recite Medicine Buddha mantras when I'm that bad, which I feel is a massive step forwards. Previously I'd not been able to think at all, and hadn't done anything when pain was really bad. But now I'm able to keep my mind focussed on practice, which I can only think is a good thing.
But it isn't enough yet.
I think I might be seeing pain as an enemy, to be overcome and got rid of.
When it's just a sensation, like any other, and it's there as a warning.
Heh, sometimes when I'm in a lot of pain, I shout at my brain and tell it I've been warned, it can stop telling me now.
Doesn't work though!
You seem to have a totally different relationship with pain to me, and I am really interested in how you did that.
Maybe my problems from childhood and not being believed have contributed to the way I relate to pain, and the desire to just get it to stop, because no one believed me, and they made me do things even though I was in tons of pain when I was young.
It's a bit weird, because everyone believes me now. I use a wheelchair... no one tells you it's all in your head if you can't walk properly.
And with the diagnoses I have, people take me seriously.
So surely my relationship with pain should change? I've had severe chronic pain since I was young. I don't understand why I haven't managed to get used to it yet, or turn it into something good like you have.
It might be that I didn't think it was possible, just knowing that you've been able to do that has changed my attitude to it quite a lot, and I am really interested in working out how to change that relationship.
It does scare me when people say stop relying on the meds, you don't need them.
Though that's more with the mental stuff than the physical stuff, to be honest.
Also, since they've said I probably have endometriosis, I'll have to have treatment for that. The normal treatment is hormonal.
What do you think about that?
I find it difficult, because research has shown that these things do work to help these conditions.
And I can't deny that.
Because my Ehlers-Danlos is rare, and because I spent so long without a diagnosis, I've really found that reading all the research on it helps me. It helps to know my condition really well, and understand what's going on with it. I've extended that to all of my conditions, and I have read all the latest research breakthroughs.
For example; it's been discovered that in Bipolar patients, each mood swing actually causes brain damage. It destroys brain cells, and they'll never come back.
It's not serious as such; it won't kill you. But... it's slowly destroying the part of your brain responsible for controlling the mood and the swings... so as you get older, it gets more and more difficult to control those swings.
That's where the medication comes in.
I guess maybe I'm looking at it from a very scientific point of view.
These things can be shown on MRIs, and fMRIs, and it can be seen that this medication helps.
I know it helps; it's helped my mood swings immensly.
I'm not looking for that psych fight you mentioned... but from someone so used to having to rely on doctors (I have so many medical conditions, I'm a bit of a recessive genetic disaster!), how would you explain it all, that although I can see the results of those medications, it's still possible to control all of this without them.
Sorry if this is a bit rambly. I think I'm realising that I do have the wrong kind of relationship to things. I always thought I had a really good relationship with my body; I'm intensly aware of it, and minor adjustments, and the same in my mind. I know that something is slightly off way before it becomes apparent.
Maybe that's a step towards control though.
Or is control the wrong word?
Again; I'm thinking of controlling my mind, so it doesn't do things that are 'bad'. But is control the right word?
I don't want to just go along with some of those things - I get serious homicidal / suicidal mania, and I have blackouts where I don't know what I've done, and it turns out I've done really, really bad things. I can't just allow that to happen. That's why I'm thinking of control.
Maybe I'm looking at it wrong still.
Nicola
Djon Ma