Was I so important? Dealings with people while suffering incurable illness.
Admire or trample on? The choice is with the individual or group?
It was the first few weeks of my dialysis "career", that is so to speak. As a patient there is much to deal with. Dialysis is as much likely to kill a patient as clean their blood -perhaps an exageration these days, but it does happen, I've witnessed it! Besides the pressures, strains on the system being likened to a marathon; dialysis is only 10% OF NORMAL KIDNEY FUNCTION. eVEN WHEN THE PUMP SPEED IS SEVERAL TIMES FASTER THAN THE HEART RATE. This is done to achieve "better" dialysis! (still only 10 percent!)
It stands to reason then that this is a very stressful illness to have to deal with! And as dialysis sessions are three times a week, people that would not normally mix together are thrown into a melting pot and don't always get on. This is described in real terms later on in the blog. The person in question has not been seen for years so I am not able to confront her with my annoyance directly. I do wonder to this day what goes through the minds of some people. Why, when I hated (still do) the thought of temporarily losing my freedom, some-one would try to freak me out by staring at me obviously and in a prolonged way whilst I am stuck; tied to a bed having my blood cleaned! Was she trying to take more of my freedom away?
I have since made provision with end of life (palliative) care that if such as this does happen, I do not wish to continue treatment! In the meantime I have dedicated my life to trying to make the best of a bad situation. Having got over the initial shock and gone some way to adjusting to the new world thrust upon me. At the end there are links to some of my writings that cover these aspects that the reader may be interested in. Particularly new renal patients or others with incurable illnesses.
Psychological assumptions are often wrong!
Awhile ago in a forum, I asked the question. If I thought people were out to get me would I be committed?
I was surprised that a hub-friend wrote "Yes. Because what makes you think you are so important that people would be after you?"
But, where does the assumption come from that I actually think I'm better than any-one?
And if I did, what is wrong with a bit of confidence? And if I actually had a skill that was somewhere ahead of the average, and chose not to, or forgot to scale it down in public to the lowest common denominator -why should that be, why is that so upsetting, annoying etc. to some people /people generally?
Why would it be I that got locked up rather than the intensely jealous and vindictive people that would stoop to try to knock me off my perch. Why do they take things so personally? And so Yes, there is a truth in the psychologist' view/"joke" that "people who don't go to therapy are often more in need of it than those that do."
But, of course these vindictive people that are more in need of their heads being seen to, are not concerned by their bad character' ("character disorder' psychol.) they are in groups of like minded people that support each other' vindictiveness and call it "a right laugh". They are each others comfort zone and don't feel, or see the need for this on a professional basis. (pity)
On the other hand as soon as some-one speaks of an incident against them, and the person they've gone to suggests counselling/ a social worker, or whatever on those lines. And the person agrees. They are actually agreeing to the suggestion "something is wrong with you!" this is the subtext or another way of saying "You need to see some-one." or the flippant "Keep taking the pills." etc.
Grandma often said when discussing me with my mother in the kitchen, while I sat in the living room after some commotion or other. "He thinks he's The Great I am!", I can't remember the fall out, only I do know that it would've been over dramatised, people would've used put downs rather than trying to talk on an even keil., It would've been at a rushed or fast pace to make the hype worse. And what's more this makes people rely on clever quips they've heard, or fast thinking to keep up, and try to shut the other person up. An I win, you lose victory is always being sort in this type of interaction. I grew up with a lot of these, including school and what have you.
- All that is wearing is all that is worn
It seems that growing up in this type of environment, puts the self in a place where you have to learn more and more not to be knocked off that perch. I neveer thought to use letters, or involve third parties at my mum's angry rages. I tried to keep up, and sought various tactics to stay /'get even'! -I lowered myself too while trying to get back -merely to where I was before in the end.
If you put up with a lot of battering. Physical abuse, get in a lot of fights etc. This usually tends to work on the mind. You look to things, books for information to learn the best self defences, but more so if something happens a lot you come to expect it. To wonder when it's going to happen again! Even finding that sometimes "getting one in first" can be helpful, even act as a preventative measure or start what has come to feel normal. For the same reasons abuse survivors become over sexed. It stands to reason, being introduced at an earlier than normal age. It is only when we come across/experience something that we actually start to think about it. The more traumatic it is, the more we tend to think about it -to try to solve it or understand it, recover from it etc.
So. Is it actually that I think I'm better than others? Better at what? Or through exposure am I over aware. That is to say, on a different level to the supposed norm, or lowest common denominator that says "here, but no further". And when I win a dispute that I might have lost elsewhere, how much more satisfying is that! But, how bitter for the person who had not seen or known of the quip that came sometime after the first, second, third, ... time I had that "conversation", "discussion", fall out, argument etc.
How do I stop playing the game, how do I get out? If I keep the problems to myself, they will be stuck within myself.
Society: A Hub of activity!
Is "A problem shared -a problem halved"?
I remember in the schoolyard. Going up to some-one (any-one and every-one) will you help me against so and so, he's got a gang against me. Invariably I got "I'm on hise side!". In that rotten school experience this happened over two or three yard intervals, or I fell out with this "pal" two or three times. Eventually, I just said to these people something like "We've fallen out again. He's over there!" It was his way of proving his popularity.
For me it was something else that I got to wear -Psychologically! So, I go to a place, I don't expect to make genuine friends. I get acquaintances and am more comfortable in keeping them at arms length. The message I've learned with this and many other incidents, interactions etc. Is "I'm not well liked." -I don't tend to trust anymore if some-one actually does 'like me'. or for that matter what this actually means or entails as I've had no real interactions for much Schemma (information) to build on this. Though have known plenty of users! People who test you -whether they know it or not- with such things as "how will he react if things don't go his way?" tend depending on how this goes afterward. Tend to show themselves not to be friends, for those who are would prefer for things to go their friends way and if they genuinely are friends would be comfortable with it. I don't know whether the tests were a mechanism that just happened or vindictiveness on the part of what I thought were. And turned out just to be 'knock about buddies'. I wish I'd known.
I mentioned vindictiveness; that plays it's part with people. Along with sarcasm, at different times sometimes -I seem to have been brought up on it. One load built into my schemma/s. Helps, it seems to get rid of people; and tends to come out whether I want it to or not. Sometimes, I aren't even aware of it until things kick off, and I have time to look back etc.
So, do I think I'm so important as to be in a position where people would be "Out to get me" as the psychiatrist calls it. Or against me, or to despise etc. Those quacks might take a look at where it says "People will hate you because of me" and know it gets no better in those precious institutions they inprision people in! -If they stopped to look, they'd realise that some-one who feels genuinely ostracised on thwe outside must have been in some kind of environment where people gather. -even if it's getting into an argument at a bus-stop (flippant, This would more probably show the process rather than the beginning of the hate crimes).
I refute that locking some-one up isn't necessarily the best answer. Give them things to do. And worse. The tyupe of questioning and it's outcome tends to belittle the patient. The patient clearly doesn't feel so important as to refuse some-one elses "help" or rather the hope of it. Because they've put themselves in such a position -or allowed themselves to be put in such a position as seeing such a person. And what do they get? More of the same! Bossy nurses, even criminal types, lyers, ECT. And now it's worse because they can't get away!
If you have any self worth left. Don't go down that road!
mechanisms of help
When the hospital gets on my back. I WRITE everything. I make sure no stone is left unturned. And when I've got what I feel I need, I make sure people have copies. (note plural! COPIES -to well selected friends and family, even other departments like MP. when it's been necessary.)
The hospital have sent in writing evidence that they don't like this. I was told to "Stop writing every conversation or incident..." note: Not we're sorry you seem to be having problems at one of our satelite dialysis units. I found that complete arrogance because even in dialysis my time is and should be as much my own as possible and it is not for them to tell me what to do with it. Though I'm tempted here to tell them what to do with theirs!!!
By writing there is less room for error, it is harder for people to "hide things under the carpet" etc. It therefore aids good communication. So why would any-one dislike it? (under Leeds, UK)
Back to the question at hand
So, do I think people are out to get me? And if so, Is this because I think I'm more important than ...them, you, or any-one else for that matter> If so why??? It ciould be that people have been poised in such a way as to be testy. Perhaps my lack of social skills. Perhaps having been more tested gives me a greater sense of self through a feeling of needing to protect myself, or find ways of building myself up in order to be left alone. Perhaps my SELF gets worn away by criticisms and sarcasms that I get so afraid that I may lose my sense of self due to a powerful adult etc./whatever assuming/taking control. So why would they say or act as though my or an other' SELF is more important to mine and then go about threatening my sense of SELF.
And so, a person who gives the impression to others that they are more important may be a sufferer or "survivor" of the above. AND/or it may well be that the accussers of this have suffered/ come across the above! /also.
The lesson is an old one. "Know thyself!"
Important or Vulnerable?
Can these qualities be differentiated by the outside world; whether casual observer or supposed expert?
I did not have so much scrutiny, or for that matter find life so hard until I had to go on dialysis, thus spend over 12 hours a week with medical people. People who weren't there to be sociable or even well versed in being humane to others. But simply there to do a job which in many respects is essentially a glorified mechanic! -Or less.. A Driver even! (Know the workings of a machine, how to make it go, Put the person (passenger / "patient") on, guide them through the traffic (any problems either with machine or patient) then when the time comes take them off. (Destination reached, time to get out of car! More so these things simply require the nurse / driver to pass a test/s!
Speaking of tests. It became apparent that doctors like to promote their own interests and nurses like to follow them. Predominantly women. And women tend to go for and follow certain types of men. It's probably an attraction caused by similar beliefs. And while The NHS is in crisis doctors still don't have to justify how they spend their budget. Nor even have to worry about blowing their budget going by the level of debt the NHS has reached!
So, I'm new. Dialysis is daunting at the best of times. Much is unknown as much is not explained. And what is seems to have much vagueness about it. I just got a general run down of the various options. To be fair I got enough initially to make the best choice open to me. But very little else.
The worst time at a place is going somewhere new. Though a psychic had given me a hope to cling to about a mis-diagnosis and only requiring one dialysis session. ...some hope! Surely the staff saw I was struggling but did I get one word of encouragement?
Hey, it's not that bad.. You can still do something with your life, even if it isn't the way you expected. Hey, and think of it this way. As extra time being given so that you can find what it is you came to do and achieve it. For me it is to learn modern computer programming. So far I belated managed retro 8bit, and had articles published in the free online magazine.
But I'm still struggling to learn the modern complexities. (It's harder with a life threatening illness as the stress levels significantly increase and it can be somewhat disheartening!) I plod on. 'It's all you can do' as some-one replied to the question 'how are you doing?' Well, considering Thank You. So far I've managed to avoid The (How do you xxx... think I feel?!)
Surely, if I wasn't important somehow I would have no need for this extra time! I have no dependents. Only one or two family members take any notice and they won't be here forever. Friends or would be friends don't seem to give a stuff whether I'm around or not. And the only thing left that ever was important to me is my writings, and the thought of being a programmer. Killed off is the hope to play professional football, be a singer, even Counselling those who've been through similar, I had even wondered about Evangelism. But it now seems to me that all we have to concern ourselves with is getting back to the place from whence we came. This is merely a home from home.
I found it wiser to not appreciate medical care too much in case that motivated them to want to give me more and keep me there longer. Losing the freedom I had is bad enough. I flattly refuse to lose anymore... Despite one nurses best efforts. I being a bit small for a man, tall but rakey. To me then many others are big. Having been brought up (some might say 'dragged up') in a strongly female dominated environment (even the mates I had were female for a long time, as such I have grown up a little bit on the so called "effeminate" side. You could say that any woman could've caused me more problems than the average man. This woman was bigger than most in any way you can imagine. Now, I don't know whether or not she happened to shave but the impression I got was not very feminine at all.
Strange then, if not somewhat disconcerting to say the least, that this nurse decided to stand and obvious, ever so obviously stare at me for a long part of the four hours that I'm stuck there dialysing. Worst of all it took me awhile to notice as over the years I've dealt with traumas by allowing myself to day dream. It had never been under scrutiny before. In fact Granny encouraged it, allowing myself to drift as she read such excellent books as "Wind in the willows, Kenneth Graham." (almost every time I was sick -which was quite a lot as they took my tonsils, adenoids etc. out when I was young. (And didn't tell us of the consequences!) The imagination grew strong which has helped me to write poetry etc. Some self published. I continue to write and am looking into publishing family poems on Kindle when I get round to it.
Suddenly, I'm in a world where this is no longer allowed. With no prior warning and no-one explaining the new rules, and all I am knowing is that I''m getting tested and not knowing exactly why or what the test is. It is like being pushed into an exam without first being allowed to prepare and revise for it! Having failed my 11+ (secondry school entrance test) and much was through being ill prepared, and dis-interest! I was now being tested again without being consulted even. Let alone told it was compulsory! Was this compulsory? What was it?
The same fat ugly large breasted old hag of a nurse took my blood pressure. As she tried, it seems to pull my arm into her breast. I managed to find the strength to exert enough force to push my arm towards her arm, and away from the daylight interupting rack! I overheard her say this to some-one else. "He pulls his arm the right way." Well, merely confirmed
I'd done the right thing in her eyes. What if it hadn't been a formal test, what if had been sexual Harrasment? When I thought of this, the words that came to mind that describe my impression of that nurse, who was only probably carrying out her job to what she thought was a good standard, well the words that came to mind I am not allowed to Print! She/any such person could've said anything!!! No-one would've believed me, a mere patient! New, and so wet behind the ears I was finding it hard to keep my head above water as is, without this extra pressure. A pressure that I since realised that there isn't many in the medical profession that would last under the same kind of scrutiny. But of course, they don't scrutinize each other!! And in my distinct ten year+ experience I have seen those who would not last under half the scrutiny I have recieved! Even with dialysis out of the equation in some cases!
Other scrutinies are listed in my other writings. It isn't everything but there is quite a lot of this obstacle course. From being in an environment where I was loved (perhaps too much, "spoilt") to this arena where it is called care but many only show care when they can control. Others not even then!
To conclude: Having to go on something like dialysis is life changing, and quite daunting in itself. Unfortunately, too many live for the moment. In time I got over much of the extra pressures, stresses and traumas of this new adjustment to my existence. For others facing similar I say, read my hubs and let me know through the comments if/when they are helpful.
Best Wishes to all people. -even that nurse!
If a person's health deteriorated due to bad financial or health advise. Does it matter???
What do you consider most important?
my Kidney /"Renal" writings
- kidney failure: Parathyroid problems
A Diagnosis of Renal Failure often brings with it other problems. Here is a link to the wider picture. Starting with The Parathyroid gland. sitting next to the Thyroid in the throat, and neck.
- Preparing an Ending
A life threatening Illness or Accident can change the way we look at life and ourselves. Sometimes ignoring something doesn't make it go away. Being prepared for any eventuality helps greatly.
- Transport to Hospital
The issues of glorifying a taxi drivers role!
- My experience of opinion/s regarding Dialysis
- Whose choice is pallitive care?
An old man says
- health and fitness with dialysis
Awareness is key to success. For Instance, many health, weight gain etc. products contain potassium, a problem for most dialysis patients because this builds up and can be deadly in high doses.
- pallitive care in illnesses without cure
An ageist ideal:
- Coping with dialysis: Secrets revealed!
Facing dialysis for the first time can be hard. The first few weeks are the hardest. Patients, relatives and carers alike will find some new insights here. A demistifyer for renal new comers.
- Scrutiny & Security and Dialysis
My genuine experiences of a rogue unit. Despite trying to leave it took two years to get out. Then I ended up somewhere potentially as bad. I am now free and live -well enough- to tell the tale.