After countless medical tests and trials on several medications with horrible side effects, the conclusion is 'we don't know'.
I'm very tired to hear 'you're too young to take these meds' 'you shouldn't have pain' - Well, fact is I do have pain, constant, debilitating, stupid pain, and as to my age, am I supposed to just put up with the pain and wait until 20 more years pass before I am 'eligible' for adequate pain relief?
I'm tired because I don't sleep, the pain wakes me up, can't find a comfortable spot for long enough so I get rest.
I'm tired because people don't believe I am in pain just cause they can't see it.
I'm tired of life being so painful.
Pain is so terribly isolating, I am alone and the stupid pain is so obtrusive, it interferes with every single aspect of my life.
I'm tired of trying so hard everyday and all for what?
Nothing's getting better
Tuesday, 16 April 2013
Sunday, 24 March 2013
Old news
Here I am again, same old story, chronic pain is there although I did try a new med for it which seemed so promising except all I got was the very bad side effects so I had to can it and I'm now back to the beginning.
Same old shit from the dr: 'oh but you're so young, we should only be giving you these meds when you're very old'
What are the chances of me getting old? Not many, as to the chances for me becoming very old - zip.
I wish I could invent a machine that could make me feel less detached. I can't feel anything.
I know rationally I 'love' my family and friends but I just don't feel it.
I thought my latest attempt at taking antidepressants would help but a year later and a rather serious case of SSRI toxicity I am yet again not medicated for my stupid melancholic depression.
How I make it day after day is beyond me. This isn't life, it's not dignified, it's not even acceptable, and yet it is, sadly, my reality.
Mother said all I need is {_}, no mother dearest, what I need is my brain to work properly and produce enough neurochemicals to keep me well.
My pain is so bad I can't even cry.
Same old shit from the dr: 'oh but you're so young, we should only be giving you these meds when you're very old'
What are the chances of me getting old? Not many, as to the chances for me becoming very old - zip.
I wish I could invent a machine that could make me feel less detached. I can't feel anything.
I know rationally I 'love' my family and friends but I just don't feel it.
I thought my latest attempt at taking antidepressants would help but a year later and a rather serious case of SSRI toxicity I am yet again not medicated for my stupid melancholic depression.
How I make it day after day is beyond me. This isn't life, it's not dignified, it's not even acceptable, and yet it is, sadly, my reality.
Mother said all I need is {_}, no mother dearest, what I need is my brain to work properly and produce enough neurochemicals to keep me well.
My pain is so bad I can't even cry.
Saturday, 2 March 2013
Rain
The rain started again yesterday (friday) and it hasn't stopped, it might not stop until Thursday. It really is getting ridiculous.
The worst of it is that the damp makes my joints and bones very painful and I get very wheezy.
I'm tired of chronic illness, chronic pain, melancholy, insomnia.
It is rather baffling that my own body is attacking itself.
The worst of it is that the damp makes my joints and bones very painful and I get very wheezy.
I'm tired of chronic illness, chronic pain, melancholy, insomnia.
It is rather baffling that my own body is attacking itself.
Tuesday, 15 January 2013
musings
TRIGGER WARNING: what I've written may upset or distress readers.
So, suicide.
I know, it seems like a horrible, unmentionable topic except it isn't. Suicide is merely death by one's own hand and death is a fact of life. Most people seem to be very afraid of death and dying and particularly afraid of talking about it.
Yes I often think about death, dying, suicide, about my own mortality and that of those I love and love me. I have tried to end my own life and failed (obviously).
Having tried and thought about suicide so much has made me understand that when it happens there is no fault, no guilt, no reason to be found, it cannot be explained by those who are left behind, it is distressing, unbearably sad and so painful.
It is also true that when all you can do is to try to end your life you feel so alone and there is nothing else around you, everything seems dark and you just want the agony to end so if your attempt failed you feel extremely shit, to the point of not reporting it to a dr or a friend so you get to feel even more alone.
I do not believe every depressed person thinks about suicide, perhaps they have a 'mortal wish' i.e. they wish they were dead but not necessarily make plans or think about acting upon it. That desire to be dead cannot be told so easily to others because most people think suicidal ideation and mortal wish are the same when in fact they are very different, however one can easily end up committed in a Psychiatric ward for saying 'I wish I was dead' so no wonder many with mental illness do not disclose their deepest angst and thoughts so easily.
Depression makes you very irritable and I think this combined with fear of being judged by others who do not understand what you feel makes many of us withdraw even more, so in effect even more alone and therefore we don't talk about 'it'.
People who are healthy and have never had depression find all this very hard to understand and often don't know what to say in which case is better not to say anything and only ask if you really want to hear the answer, make time and brace yourself, it may not be as bad a chat as you feared or it may be just about the most confronting talk of your life, only offer help if you are willing to help and never out of duty, there are professionals who can help you sort out what kind of help you can be and please for the love of universe do not say: 'you're not doing so bad, there're people out there who have it worse, think of Africa' that certainly doesn't help.
So, suicide.
I know, it seems like a horrible, unmentionable topic except it isn't. Suicide is merely death by one's own hand and death is a fact of life. Most people seem to be very afraid of death and dying and particularly afraid of talking about it.
Yes I often think about death, dying, suicide, about my own mortality and that of those I love and love me. I have tried to end my own life and failed (obviously).
Having tried and thought about suicide so much has made me understand that when it happens there is no fault, no guilt, no reason to be found, it cannot be explained by those who are left behind, it is distressing, unbearably sad and so painful.
It is also true that when all you can do is to try to end your life you feel so alone and there is nothing else around you, everything seems dark and you just want the agony to end so if your attempt failed you feel extremely shit, to the point of not reporting it to a dr or a friend so you get to feel even more alone.
I do not believe every depressed person thinks about suicide, perhaps they have a 'mortal wish' i.e. they wish they were dead but not necessarily make plans or think about acting upon it. That desire to be dead cannot be told so easily to others because most people think suicidal ideation and mortal wish are the same when in fact they are very different, however one can easily end up committed in a Psychiatric ward for saying 'I wish I was dead' so no wonder many with mental illness do not disclose their deepest angst and thoughts so easily.
Depression makes you very irritable and I think this combined with fear of being judged by others who do not understand what you feel makes many of us withdraw even more, so in effect even more alone and therefore we don't talk about 'it'.
People who are healthy and have never had depression find all this very hard to understand and often don't know what to say in which case is better not to say anything and only ask if you really want to hear the answer, make time and brace yourself, it may not be as bad a chat as you feared or it may be just about the most confronting talk of your life, only offer help if you are willing to help and never out of duty, there are professionals who can help you sort out what kind of help you can be and please for the love of universe do not say: 'you're not doing so bad, there're people out there who have it worse, think of Africa' that certainly doesn't help.
Sunday, 28 October 2012
There and back again, finally
I'm finally back home in the Mid North Coast of NSW, I'm very glad to sleep in my own bed again.
What it was supposed to be a nice relaxing holiday/visiting family trip turned into a 'medical tourism' experience unwillingly.
I must praise the public hospital system in Mexico, the care I got was excellent, prompt, and very respectful of my rights as a patient, the Neurologist, Emergency Medicine Registrar and the Internal Medicine specialist were all very kind to me, treated me very professionally and were very knowledgeable, the nurses were also excellent, especially when I might have been a difficult patient due to the circumstances.
After all medical visits and alternative treatment options the trip was nice in the overall, even if at times I just felt like catching the next flight back.
I got to meet wonderful Maren whom I miss terribly, she has the loveliest gummy smile I have ever seen, I met with some really dear friends and other cool people, got to eat delicious food and had more rest than I have had in a long time.
The shit hit the fan on my return flight from San Francisco to Sydney, we were onboard the plane for 3 fucking hours without even water in a steaming cabin full of annoyed people when got told at 2am the flight was cancelled, no hotel rooms, no help, no flight until maybe 10:30pm next day, I was tired, pissed off and in acute pain when the big guy behind the counter threw the remnant of my used boarding pass at me and said 'not my problem', got ignored by the manager on duty who asked me 'what do you want?' as first greeting, charming.
United Airlines sucks big time.
Finally made a flight next night after even more drama but too tired to recount, after about 50hr travel made it to Sydney and 3 days after I got finally home.
I got a confirmation of the polymyositis diagnosis, a ct scan, a lumbar puncture, lots of laughs, cuddles from a beautiful baby, adverse reactions to multiple meds, 2 blouses, lots of pain, and some extra kilos, those are my souvenirs.
Tomorrow I go back to my hydrotherapy treatment and to start this new chapter in my life.
What it was supposed to be a nice relaxing holiday/visiting family trip turned into a 'medical tourism' experience unwillingly.
I must praise the public hospital system in Mexico, the care I got was excellent, prompt, and very respectful of my rights as a patient, the Neurologist, Emergency Medicine Registrar and the Internal Medicine specialist were all very kind to me, treated me very professionally and were very knowledgeable, the nurses were also excellent, especially when I might have been a difficult patient due to the circumstances.
After all medical visits and alternative treatment options the trip was nice in the overall, even if at times I just felt like catching the next flight back.
The shit hit the fan on my return flight from San Francisco to Sydney, we were onboard the plane for 3 fucking hours without even water in a steaming cabin full of annoyed people when got told at 2am the flight was cancelled, no hotel rooms, no help, no flight until maybe 10:30pm next day, I was tired, pissed off and in acute pain when the big guy behind the counter threw the remnant of my used boarding pass at me and said 'not my problem', got ignored by the manager on duty who asked me 'what do you want?' as first greeting, charming.
United Airlines sucks big time.
Finally made a flight next night after even more drama but too tired to recount, after about 50hr travel made it to Sydney and 3 days after I got finally home.
I got a confirmation of the polymyositis diagnosis, a ct scan, a lumbar puncture, lots of laughs, cuddles from a beautiful baby, adverse reactions to multiple meds, 2 blouses, lots of pain, and some extra kilos, those are my souvenirs.
Tomorrow I go back to my hydrotherapy treatment and to start this new chapter in my life.
Wednesday, 19 September 2012
After the party
So, I'm back in HQ at Mexico City after traveling to the desert city of Durango north of the capital. It was nice, it's a quietish town quite small for a city in this country but full of old interesting buildings.
I went to the XXVIII Festival of Medicinal Plants, attended a pretty cookie seminar that was supposed to be on Music-therapy but in reality was about strange stuff about god and spirituality, which I don't particularly care about but there was a fair bit of dancing and that was fun!
I did ritual dancing every morning at 6a.m and for someone with the exquisite pain I feel all the time I did pretty well, naturally every afternoon I thought my back was about to snap but I enjoyed myself.
The worse part was the coach ride there and back 12hrs each way - that sucks!!!
Now back @ HQ I feel exhausted, still 4 more weeks in Mexico before I go back home to Oz.
It was a fun party.
I went to the XXVIII Festival of Medicinal Plants, attended a pretty cookie seminar that was supposed to be on Music-therapy but in reality was about strange stuff about god and spirituality, which I don't particularly care about but there was a fair bit of dancing and that was fun!
I did ritual dancing every morning at 6a.m and for someone with the exquisite pain I feel all the time I did pretty well, naturally every afternoon I thought my back was about to snap but I enjoyed myself.
The worse part was the coach ride there and back 12hrs each way - that sucks!!!
Now back @ HQ I feel exhausted, still 4 more weeks in Mexico before I go back home to Oz.
It was a fun party.
Sunday, 9 September 2012
Mexico
So, after 4 years since my last visit I'm once again in Mexico, Mexico City to be precise, I'm glad to be here, after all who knows if and when I'll be able to come back.
I was hoping for a relaxing, invigorating, joyful holiday but on my second day only I managed to end up in fucking emergency at a Neurology Hospital with the mother of all migraines, the drs thought I was having a stroke! Thankfully it wasn't that sinister, it turned out to be a 'flare up' of he polymyositis, I was aware it is a relapsing and remitting condition however I had no idea a relapse could be so full on!!!
CT scan, drip w wonderful painkillers, lots of blood taken out and a freaking Lumbar Puncture later I am now getting used to the level of pain one notch up and thanking my lucky stars I wasn't admitted for that would indeed suck balls during my holiday!!!
I hate pain and my body hates me.
My live and thoughts to all of those out there suffering from chronic pain in particular but also thinking of all those ill, in acute pain and in need of medical attention.
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