Quality of Life – Does Not Apply

June 1, 2025 ~ quantumdreamer ~ Leave a comment

Various questionnaires / tools can be found online for sampling quality of life and the perceived quality thereof. I like quizzes. Some assess physical disability and pains as an attempt to “quantify” decision for surgery, inter alia, for hip replacements. There are mood questions which probe how much of a victim one feels, how hard done by one imagines self to be and the quantity of social interaction. Many of these questions are comparative to “others” which are a bit iffy. They should perhaps be rephrased “by comparison to your perception of how others are or might be”. They are all deeply rooted in a socially conditioned view of society. Some ask about satisfaction.

“How satisfied are you with your….”

This is probing dissatisfaction, dukkha, suffering, in terms of Buddhist thinking. It is probing how well accustomed and acclimatised you are with the social illusion. It evens asks how happy you are!!

Scanning through these questions there is no box for “does not apply”. In many cases this is the one I would tick.

I am sure that many of my answers born of detachment might solicit a diagnosis of depression. Though I am far from depressed. I am not goal oriented and obsessed with comparative “success”. I do not want to shag like a rabbit. I don’t give a shit about my appearance.

They ask how lonely you are, how much help you get from friends….

They do not ask how easy it is for you to get away from hordes of loud irritating people, to find some peace, silence and tranquillity.

My self-perception is that I am no longer able bodied. Yet I can do things a desk-jockey cannot do. I can still chop wood with a four and half pound axe. I cannot walk for much more than a kilometre before the pepper-mill hips grind to a halt. Technically speaking I am at least partially disabled.

I don’t feel particularly ill or unwell, but others may consider me to be that way. Normal for me may be unwell for others. That is the thing about personal normality, it creeps up on you, you become accustomed to your day to day physical reality. Your normal may differ from that held by the eponymous “they”. Some may even pity me, slightly.

“He should be out socialising in a large group walking with a tour guide, with conviviality. He should be a member of social societies, mixing and having fun! At his age it is a shame…Poor man…”

“Humanity” likes to foist its ideas and preconceptions upon others.

In my mind there are some health leads pertaining to blood and osteoporosis that need followed up. There is the possibility that I might be allowed to have hip replacements. This is not a given. I read today that the BMI Nazis in the UK are trying to force people to lose weight before operating and that a high BMI increases waiting time.

Great logic, someone is fat, stop them exercising because of pain and expect them to lose wait before you enable them to exercise. Vicious circle – methinks. Well done NHS accountants…top job.

I do know intellectually that increasing co-morbidity number points towards a decreased life expectancy. I am well in that camp.

Should the time come, I imagine myself ready.

What would a psychologist make of that statement?

Bumpkins Go to Saint Helier

May 17, 2025 ~ quantumdreamer ~ Leave a comment

It is very difficult to get across to most people just how out of touch we are with modern living and specifically people density and noise. Aside from medics, tradesmen and checkout people, I speak with nobody other than the wife. This has been the case for quite a while, over six years. I have spoken in person to/with her brother and friends when they visited. I have had very few zoom type calls in that six year period. Certainly, less than two dozen. I do not speak on the ‘phone. Nor do I chat via email or WhatsApp whatever the hell that is.

In many ways I am a bumpkin, a pikey and a hermit. I am no longer accustomed to “sophistication” nor the high octane pace of somewhere like Saint Helier Jersey. {Population~ 30k}

I am unaccustomed to any social interaction.

Part of the purpose of visiting Jersey was to see how it felt to be surrounded by people and anglophone people at that. It is fair to say that I am still a little shell shocked. We were out of the compound for less than 48 hours and in the Metropolis for 24.

The fist thing I noted was just how frantic and ill at ease people were. The energy they were giving off was edgy and wanting to please, to fit in. The manager at Pizza Express asked us if we wanted the app…Why? I don’t use apps and we have not been to a Pizza Express for more than six years. I did not even have a ‘phone.

The people in Jersey seemed rushed and hassled compared to here. And boy were they loud when bullshitting each other. I noted several chunky “personal trainer” types, keen to exploit the Jersey dollar for fitness and “well-being”. There is money and it attracts.

The only calm experience, outside interaction, I had was when I sat on the bench outside M&S and a well-heeled woman older than me sat next. Neither of us were rushed. We shared silence for a few minutes. She went into Givenchy. The main street was a bit like a cross between high street Guildford and Bond Street London.

Jersey is clean and “posh”. It is also surprisingly multi-national with people there to meet the services sector demand. I used to hang out in posh places, South Kensington and earlier Mayfair / Piccadilly. I lived in Brixton.

The hotel we stayed at was very nice. We ate at the hotel restaurant. They played loud “party” music and people outside on the terrace were necking booze and smoking or vaping. The food was good and the service very, perhaps overly, quick. There was noise and laughter outside. I thought to myself that once I used to do that kind of thing. I would have been content as a Brit on the piss. It all seemed more than a little forced and false. It was hurried. There were ostentatious handshakes and kissy-kissy helloes.

I was the alien from another planet. I was able to order, in English, food from the pygmy African waitress. I was observing, earth.

–

–

The rheumatologist suggested we move to Jersey for the “quality of life”. It did not seem that attractive to me. How do you explain quiet tranquillity with no social interaction and a gentle river running through the garden? That has quality and not a constant needy need for social interaction and social affirmation. There is no need for endless consumption, conspicuous or otherwise.

I am still sighing a little, a whole day later.

What is obvious from that visit is that it is probably not wise to live in a “built-up” area and that I do not miss the people in whose country I once lived. I do not need that English vibe.

It might be possible to live in the countryside and visit an urban “metropolis” when there is a need.

Unfortunately, I am like a sponge and can pick up all that emitted jangly nervous energy. It made “in town” sleeping hard.

Theoretically It would be possible to earn money tutoring wealthy kids in physics and chemistry on Jersey. But I don’t think there is anywhere there far enough away from “civilization”.

If I found Jersey difficult to hack, London would cause a complete meltdown.

Did I really get on the Victoria Line every weekday morning during rush hour? Really? And without any medication?

In terms of incarnation that seems like the most surreal incarnation that I have ever had.

Still more than a little shell shocked after only a very brief jaunt…

None the Wiser

May 16, 2025 ~ quantumdreamer ~ Leave a comment

Not long back from a visit to Saint Hellier Jersey where I saw a consultant rheumatologist. They suggested that there is no extra immune-stuff active in my skeletal problems and that most of my “random” inflammation events are probably so-called gout.

There is a lot to unpack mentally and in terms of feelings. There is a question, “did I really live like that once upon a time? Really?”

In the space of a few weeks, the consultant was the second to note and comment upon my recently measured elevated haemoglobin levels. Which could be due to my prior smoking, my COPD, genetic causes or living at elevations during early adolescence. Others causes like blood cancer are very unlikely.

In nearly every medical situation the fab three are rolled out as the most likely cause. The trio of obesity, booze and fags are the go to default diagnosis. In the UK there is a bit of fetish about BMI. It is a well-used mantra. This trio may have a confirmation bias effect. I am / have been triply holy.

In the 1994-5 when the people at St Thomas’ London were looking into the haem thing it was put down to smoking. They bled me on a regular basis to try to drop my haemoglobin levels. It was a part of a whole host of “lab-rat” tests that I had done back then. I was a very cooperative rat, happy to be in anyone’s research programme. This probably rules out esoteric causes.

The most surprising thing with the consultant was their surprise that there was no bone density follow up after me falling and breaking the head / neck of my femur. I fell only from standing in the kitchen at the age of 55. The drop was well under one metre. The rationale was that this was a major break from only a small fall. There could have been something wrong with /weakening my bones. I am male and osteoporosis or osteopenia is uncommon at that age. They were surprised that it was not investigated. They may suggest some follow up tests in a letter.

They were also surprised at the severity of my hip osteoarthritis and the near complete lack of motion, sideways.

Here is something that I may have picked up. When people note or examine me, they perhaps transfer some imagining as to how it might feel / affect them if they were in the same condition. They may see a bleak future. I have had a number of people talk about quality of life to me. Given my flexibility and pain, it might inhibit their current life-style in which they “do” stuff. There is a bit of a shudder. “What if that happened to me?” The advice is to have a bilateral operation so as to have “quality of life”. My serene quality of life far from the loud and maddening crowd may not appeal to them. Quality of life is very subjective.

So, does one cling and try to maintain an active quality of life according to the common view, feeling miserable every time life stops you from doing what you once did and feel you ought to do?

Or do you simply adjust to your new reality, to come to terms with your lot?

Philosophically I suspect that modern medicine is bad in a Darwinian sense for human evolution. The weak and the sick can live and breed. They can live to old age. People have children at a later age increasing the prevalence and propagation of birth defects and damaged genes. Humanity will live longer but it will be sicker and less healthy.

Sounds a bit eugenic…but we are seeing the “success” of modern medicine impinge of health services and economies.

If karma has caused me to have badly arthritic hips, is it wise to try to outsmart karma by having a modern operation?

Ok, I was born in a time where such things are possible but is that a temptation of our times, trying to have life on my own terms? Maybe I should simply settle my karmic debt and endure quietly without complaining?

I am speculating that maybe I need to stop taking any medication whatsoever. It is not making me happy this endless merry-go-round.

As I said, I am none the wiser…

Quality of life

May 3, 2025 ~ quantumdreamer ~ Leave a comment

Quality of life is defined by the World Health Organization as “an individual’s perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns”. Standard indicators of the quality of life include wealth, employment, the environment, physical and mental health, education, recreation and leisure time, social belonging, religious beliefs, safety, security and freedom.

Health related QOL (HRQOL) is an evaluation of QOL and its relationship with health.

In healthcare, quality of life is an assessment of how the individual’s well-being may be affected over time by a disease, disability or disorder.

Measurement

Early versions of healthcare-related quality of life measures referred to simple assessments of physical abilities by an external rater (for example, the patient is able to get up, eat and drink, and take care of personal hygiene without any help from others) or even to a single measurement (for example, the angle to which a limb could be flexed).

The current concept of health-related quality of life acknowledges that subjects put their actual situation in relation to their personal expectation. The latter can vary over time, and react to external influences such as length and severity of illness, family support, etc. As with any situation involving multiple perspectives, patients’ and physicians’ rating of the same objective situation have been found to differ significantly. Consequently, health-related quality of life is now usually assessed using patient questionnaires. These are often multidimensional and cover physical, social, emotional, cognitive, work- or role-related, and possibly spiritual aspects as well as a wide variety of disease related symptoms, therapy induced side effects, and even the financial impact of medical conditions. Although often used interchangeably with the measurement of health status, both health-related quality of life and health status measure different concepts.

Activities of Daily Living

Activities of Daily Living (ADLs) are activities that are oriented toward taking care of one’s own body and are completed daily. These include bathing/showering, toileting and toilet hygiene, dressing, eating, functional mobility, personal hygiene and grooming, and sexual activity. Many studies demonstrate the connection between ADLs and health-related quality of life (HRQOL). Mostly, findings show that difficulties in performing ADLs are directly or indirectly associated with decreased HRQOL. Furthermore, some studies found a graded relationship between ADL difficulties/disabilities and HRQOL- the less independent people are at ADLs- the lower their HRQOL is. While ADLs are an excellent tool to objectively measure quality of life, it is important to remember that Quality of life goes beyond these activities. For more information about the complex concept of quality of life, see information regarding the disability paradox.

In addition to ADLs, instrumental activities of daily living (IADLs) can be used as a relatively objective measure of health-related quality of life. IADLs, as defined by the American Occupational Therapy Association (AOTA), are “Activities to support daily life within the home and community that often require more complex interactions than those used in ADLs”. IADLs include tasks such as: care for others, communication management, community mobility, financial management, health management, and home management. Activities of IADLS includes: grocery shopping, preparing food, housekeeping, using the phone, laundry, managing transportation/finances. Research has found that an individual’s ability to engage in IADLs can directly impact their quality of life.

Importance

There is a growing field of research concerned with developing, evaluating, and applying quality of life measures within health related research (e.g. within randomized controlled studies), especially in relation to Health Services Research. Well-executed health-related quality of life research informs those tasked with health rationing or anyone involved in the decision-making process of agencies such as the Food and Drug Administration, European Medicines Agency or National Institute for Clinical Excellence. Additionally, health-related quality of life research may be used as the final step in clinical trials of experimental therapies.

The understanding of Quality of Life is recognized as an increasingly important healthcare topic because the relationship between cost and value raises complex problems, often with high emotional attachment because of the potential impact on human life. For instance, healthcare providers must refer to cost-benefit analysis to make economic decisions about access to expensive drugs that may prolong life by a short amount of time and/or provide a minimal increase to quality of life. Additionally, these treatment drugs must be weighed against the cost of alternative treatments or preventative medicine. In the case of chronic and/or terminal illness where no effective cure is available, an emphasis is placed on improving health-related quality of life through interventions such as symptom management, adaptive technology, and palliative care.

——————————————

Extracted from Wikipedia.