Give the Doctor Somewhere to Go

Why reading your own clinical results and asking the right questions turns a consultation into a collaboration.

An AI-generated infographic on the blog content. (Click to enlarge.)

An Unexpected Appointment

Once again, I found myself in hospital, more times than I would have liked in a single year. I have lost count. I had no reason why this appointment had been scheduled, and my anxiety was not assuaged when, just over a week before, I received a call telling me to attend the diabetes centre.

It was a poorly delivered message. The department I used to attend had been relocated to what was once the Diabetes and Endocrinology Department, but you can imagine how I felt until I received clarification.

In any case, it would have come as a great shock, because nothing in my blood test results indicated any cause for concern in that area.

A Confusing Journey

When I did set off from home, I realised the bus was running seven minutes late. Although I had given myself enough time to find this new location, my appointment notice had not been updated accordingly. So I returned to the old place, where the receptionist registered me before advising me to take a seat.

A few minutes later, the receptionist came to tell me I had to go to another department. She gave directions, but the signage left me navigating a labyrinthine route, unsure whether I needed to explore further down or check with someone else. I did eventually find the place, and it was kitted out like a temporary setup, with patients barely out of a daze from the trouble of getting there.

Checks and Confusion

A nurse called out my name to check my height, weight, and blood pressure. Having arrived later than expected, and given the discombobulation that ensued, I feared the readings might be high. I took deep, controlled breaths and folded up my sleeve; they fell within the normal range. Phew!

Half an hour after my arrival, another nurse came to check what I was there for; it seemed the relocation had also introduced inefficiencies. Apparently, I had been invited for the second jab of the HPV vaccine, which, when I took it, proved quite painful.

Being My Own Advocate

This is part of my personal medical advocacy. Literate people should spend some time reading and understanding their clinical results, because doctors sometimes do not have enough time to tease out the issues with you. 

I recognise, too, that not everyone can do this alone; those constrained by education or digital access may need a trusted interpreter, whether a family member, carer, or advocate. That is precisely why those of us who can engage should and could do a little more.

When I do raise something, it is rarely idle curiosity. My questions are usually a way of satisfying myself whether a course of action is genuinely necessary. If you notice something outside the normal range in your results, bringing it up immediately elicits a response, whether an assurance that there is nothing to worry about, or an investigation requiring further tests.

Working With, Not Around

This is where prompting matters. When my consultant noticed my name on the board and invited me for a chat, my question about the creatinine levels gave the conversation somewhere to go. Those levels had been off the scale in late July, indicative of either an infection or kidney problems; if it were the latter, a change of medication might enter the fray.

Had I not raised it, the consultant might reasonably have assumed there was nothing more to discuss. Advocacy of this kind is not working around the doctor; it is working with them.

Along with the vaccine, a urine test was ordered, and late last night the results returned well within the normal range. I did not need a doctor or a consultant to tell me that, and my concerns were immediately allayed.

Essentially, we underserve ourselves in the quest for the best clinical outcomes if we leave everything to doctors as omniscient experts on our bodies, when we should be doing a bit more to keep them apprised.

A Gemini Notebook AI Podcast on this blog

The Ghosts We Author Ourselves

A Late-Night Encounter

A while ago, on a walk late at night, I unwittingly wandered past a disused cemetery. It occurred to me that I was looking at tombstones left unkempt in grounds untended, ensconced between a road junction and a cluster of residences.

I was immediately in a heightened state of anxiety, expecting, through the power of mental suggestion, to see something, and yet dreading whatever it might be. My rational mind insisted there was no reason to run; and on reflection, I determined there was none to be afraid either.

An Impressionable Mind

Even so, I know how my impressionable young mind, in the past, has conjured apparitions, visible only to me, of dreadful things I find difficult to talk about.

An AI-generated infographic on the blog content. (Click to enlarge.)

For this reason, I avoid anything that invites paranormal phenomena, including horror films, since I am perfectly capable of dreaming up anything without the need for a prompt.

Back in March, when our apartment overlooked a Jewish cemetery from the seventh floor, we would close the windows and draw the curtains once it grew dark, refusing to let our avoidance of the unknown take hold.

Why Fear the Peaceful Dead?

There is a strange irony here worth pausing on. A cemetery is, by any rational measure, among the most peaceful places we might ever be; quiet, still, and given over entirely to rest. And yet we fear it.

That fear, I have come to think, is not something the ground itself emits; it is something we bring with us, inherited from the tales, fables, and stories we absorbed long before we could question them. We frighten ourselves with a script written by other hands.

The unknown, in many senses, is precisely that: we have no inkling of what is out there, or of who that patch of land once harboured or memorialised. But that very lack of knowing should work in the opposite direction.

If I have no association with these graves, no bond with those who lie beneath them, no shared history at all, then why on earth would the dead, or any other world, take the slightest interest in me? Why would they trouble to cast me as the leading player in some living horror film, with themselves as the supporting cast?

Nothing Buried Here

Put plainly, the less connection there is, the weaker the hold it should have on us. Then I found myself wondering about the humorous placebo effect of a tombstone planted as a prank, with nothing buried beneath it, yet still exerting the full graveyard effect on anyone whose imagination readily runs wild. It is proof, if any were needed, that the fear lives in the beholder and not in the stone.

The least association, then, should leave no true affinity, only a sheer, willing victimhood scripted by a fearful mind. How hard it is to unlearn the tales, fables, and stories of ghosts, ghouls, and banshees. On that night, I also knew that if I were confronted with anything, I would engage with it and stand my ground.

The Voice in the Dark

Then, out of the recesses of a nearby building, someone appeared and said hello. This time I had the presence of mind not to jump out of my skin, and as I made sense of it, I realised it was a homeless man. He most certainly had not come from the graves; and if he had, it was nowhere near as bad as I had imagined.

A Gemini Notebook AI Podcast on this blog

Tubing Down the Gullet

The Weight of Anticipation

Anxiety is a weight. It sits on your chest and bears down regardless of whether you are lying down, sitting, or standing. Anxiety also signals that the issues of life, though measurable in the brain, are situated in the chest cavity where your heart and lungs reside.

For instance, when you feel confident, you are likely to beat your chest rather than slap your head. Slapping your head, it turns out, is an act of self-deprecation in recognition of one's silliness or foolishness. Anticipation can create anxiety, and nothing quite causes that feeling of foreboding like the hours just before a long-scheduled medical procedure.

Lessons from a Previous Encounter

With hindsight, two years ago, after a multiparametric MRI scan, the consultant sprang a biopsy of my prostate gland on me without first reviewing the results or explaining the reasons. Even so, I was quite well prepared for the encounter.

I asked questions, demanded answers, and only acquiesced to the procedure once I was convinced of the need. The importance of reading up on your medical situation is paramount.

A Portmanteau of Procedures

Tomorrow, I am going for an Oesophagogastroduodenoscopy. I could have sworn that is not a word, but welcome to the world of medical terms that suggest a portmanteau of activities. The word reminds me of German, where portmanteau words are joined up with the letter "S". I would suppose, with medical terms, it is the letter "O", much like when I had that inguinoscrotal abscess last month.

In summary: I am having an endoscopy that will reach down through my oesophagus, past the gastrointestinal junction, to the first and shortest section of my small intestine. I have not deigned to measure that in miles, but it feels like a long way down to places never before visited, rather like the first landing on the moon.

Why This Procedure Is Necessary

This is pursuant to an investigation that presaged my visit to A&E after a choking incident which impacted my ability to swallow anything, including fluids, for hours. I was eventually discharged about five hours into my hospital attendance, after managing a sandwich and a drink. Taken alongside a history of choking events going back decades, and three such incidents since that discharge, this procedure is necessary.

Herewith, the cause of my anxiety: without a chaperone, I can only elect for the most basic palliative, which would be a numbing spray to the back of the throat, rather than a sedative.

Finding Peace

I believe I shall be fine. I suppose it is just part of human nature to be slightly concerned at that kind of invasive activity, and it is not helped by a mind full of others recounting their own endoscopic odyssey.

Shalom! Peace to my mind, peace to my soul, peace to my thoughts, peace through it all.

A Google NotebookLM AI Podcast on this blog

Thought Picnic: How we weep more than the bereaved

Managing the inputs

I have experienced bad dreams, some quite vivid, usually caused by medication I am on, but I also have a very active imagination. I can easily conjure up anything, which is why I control the kinds of input that enter my thoughts, especially what I see or watch.

For that reason, I do not watch horror films; childhood memories of terrifying events keep me guarded about the conversations that reach my ears.

When I was twelve and in secondary boarding school, one night I dreamt that something terrible had happened, and I believed that dream. I was inconsolably distressed most of the day until I received news that everything was fine and that the situation had been a creation of my mind and imagination.

Controlling your thoughts

The mother of a friend used to enquire about him, but her thoughts were filled with worries about something bad happening to him. Although he might be prone to mishaps, I gently advised her to change her thinking and to remove her anxiety by thinking good thoughts when they had not spoken for a while. I told her to surround him with positivity rather than dread.

A certain principle applies: if you have nothing good to say about something, then say nothing. Similarly, I suggest that if you have no good thoughts about something or someone, abandon the negative thoughts and seek better ones for your own peace and well-being. Your thoughts do not necessarily control the person you are thinking about.

How we manage the influence of premonitions, foreboding, and anxiety depends on how we train our minds. If I wake up thinking something bad has happened, I do not immediately accept that as my reality without evidence. I am more likely to comfort myself with the thought that all is well, or to pray for peace and calm amidst the uncertainty—this is better than being driven by every gust of fear and doubt.

A ship caught in a storm will likely founder if the captain and crew do not keep calm, and lives could be lost in the process. We are the captains of our minds, managing the storms of thoughts that pass through them. Yet, we sometimes give these thoughts life by voicing them or acting upon them.

Living with better thoughts

I understand that after a cancer diagnosis, some people might be worried and concerned about me. I cannot fully imagine how they felt, but I was at the centre of that situation. I had the cancer; they only had their imagination. Perhaps if their thoughts had been encouraging about better outcomes, I would have appreciated their positivity to help my situation.

You cannot live solely by the thoughts of others, especially in adversity; you need sources of upliftment that dispel the worst fears. I did not dwell on how cancer might kill; instead, I listened to messages about healing, health, living, thriving, and being strong. Out of over thirty hospital visits, only twice did I have a chaperone—because I needed to keep my thoughts positive.

If I, as the person most affected, can maintain hope, and there are many in worse situations who are not thinking the worst about their circumstances, why then are others we consider close to us full of fear, anxiety, and worry on our behalf? It makes no sense at all. There might be an inadequacy in their development of positivity and faith.

Listening carefully

The other day, after telling someone I had had cancer twice, instead of listening to what I said, he began to talk about herbal remedies and the supposed causes of cancer. A musician by profession is quite a leap from an oncologist. I was so irritated by his ignorance disguising itself as knowledge.

I know the effects of chemotherapy and radiotherapy; they can be deadly, and side effects are horrible, but we do not abandon cancer treatment. In most cases, we manage the side effects and ultimately recover.

After all this rambling, perhaps the best thing to say is: please, do not weep more than the bereaved, worry more than the affected, or be burdened more than the truly infirm. Carrying an imaginary burden heavier than the real one is a feat beyond belief.

When we manage our thoughts properly, what might be pity or sympathy often turns into empathy. We walk that long, hard mile in another's shoes, understanding them instead of making it about ourselves, our thoughts and emotions shifting focus away from them.

It is well.

We lose more than virtue without feedback

Encouragement and peace

When the woman with the issue of blood as was related in 3 gospels of the Bible determined to touch the hem of Jesus’ garment, she believed she would be made whole. Whole, as in healed and fully restored to good health, but Jesus also gave her more than she was looking for, he said, “Daughter, be of good cheer; your faith has made you well. Go in peace.” [Bible Gateway: Luke 8:43-48(NKJV)]

Those were very comforting words; first of great encouragement and then of full absolution that she did not have to worry that she had surreptitiously acquired her healing without asking or getting permission from the healer. There can be a lesson here about our interaction with God, but this is not what the blog is about.

The drawing of virtue

In another rendition of the same story, Jesus said, “Who touched me?”, He was in the press of a crowd, thronged and jostled, everyone and anyone could have been touching him, at least, that is why Peter was baffled, that he inquired, “Master, the multitudes throng and press You, and You say, ‘Who touched Me?’” To which Jesus answered, “Somebody touched Me, for I perceived power going out from Me.” Another translation used virtue rather than power.

Everyone was touching Jesus, but this woman had a different touch of determination that drew healing power from the touch of his garment to cure at an instant a woman who had suffered a debilitating condition for 12 years.

I have none of that virtue or power, but sometimes, someone would approach from something they might have observed about me for something they need, like help, advice, comfort, encouragement, for something to quell their uneasy sense of angst, concern, or fear.

Feedback helps all

Generally, I would volunteer what I have to share in the experiences I have learnt, the choice of words I have been given to speak or write, or any other means by which I could be helpful. I guess everyone including Jesus needs some feedback and a backstory that gives context to the demand so that a full narrative of the human experience is not like a chance of fate or some hit-and-run encounter.

It is draining and exhausting when you readily and openly give that good cheer and peace into the turmoil of existence and you get nothing back in regards to whether they have been helped or not at all. Then, one does not want to become parsimonious with the blessings we have enjoyed that could be employed for the good of others, however, feedback helps encourage all participants. We are encouraged to be more helpful as much as we hope that our encouragement is of great help.

My experience giving hope

In one situation, I was approached by a young man who in his 30s was experiencing his first encounters with sex and an idea of his sexuality, he was bothered he might have contracted HIV and he was ready to do himself in if the test he was going for came back positive. Providence brought him to me to encourage him on many fronts, the necessity for the test even as he was asking if the symptoms, he was experiencing meant he had contracted HIV.

I categorically told him, that only a test could confirm his status and to go by his symptoms which could be indicative of something else would just create unnecessary anxiety. That medical result was a critical indicator of what should happen next. Then, regardless of what the test result is, it was not the end of life, rather it would mark a transition of knowledge into what to do beyond that realisation. There were examples of people who went on to do remarkable things after an HIV diagnosis.

There was extensive medical help and expertise to manage HIV so he could expect the best outcomes for both his health and his life prospects. Apart from the fact that he should not go down the avenue of blaming himself and falling into depression, but he should be prepared to face up to the interesting life ahead, that sex is there for enjoyment and not as a taboo that gives life a guilt-ridden existence.

What happened after?

I had the feeling that I had both encouraged him and given him a sense of peace, he was ready to take the HIV test and whatever the result he would make the best of it. On the day of his test, I sent him some words of encouragement, wishing him all the very best. Then I heard nothing, no communication or indication, a week passed, and it was going into the middle of the second week when I decided to send him a message.

Well, our young man was off to Malta for a holiday, and I was left none the wiser as to whether this was to celebrate or commiserate on his HIV test result or life was just going on as normal. Much as I was curious, I did not want to dampen the moment with apathy borne of my sense of losing virtue in giving encouragement but not being intimated of the consequence. I kept ruminating about it and the many other times when you give out of your deepest experiences to lift people out of despair and then just move on.

Go in peace

Now, I doubt if the woman with the issue of blood would have lost her healing if she had slunk back into the crowds and not revealed herself to Jesus and the thronging crowd. She might have had a pang of conscience, but she would have been fine. It was her prerogative to reveal or conceal herself. However, if she had concealed herself, her story would never have been told, even as Jesus knew that virtue had left him.

None of the gospel writers even bothered to ask about the woman, her name, where she was from if she had family or any other history. Her story is narrated in a few verses, she had a condition she had suffered for 12 years, she determined Jesus could help, she touched him, and she was healed. Indeed, if there is any healing we can offer humanity around us, we should continue to give liberally and generously, a lot more is contributed to that activity if we know the help offered has been helpful in any way.

As for our young friend, I do hope whatever the result, he has decided to live and live well, beyond which he can be a great blessing to others.

In Telling: Beware of pill rumours

A day in hand

A few weeks ago, I looked at my 7-day pillbox on a Friday night when I was about to take my medication and I noticed I had one more day than I should have, I know I definitely took my pills on Sunday night as that is my start of the week, but I could not account for which night until Friday that I did not take my pills, the whole process is as automatic as muscle memory, the day markings on the container had long been lost to wear and use.

That was a rarity, as in the almost 13 years that I have been on a daily regimen, I do not think I have missed taking my pills for more than 15 days in total and probably quite less than that. There was one time when I missed taking my pills for 2 nights in a row and that was out of carelessness, I was away from the weekend whilst I thought I had packed my pills, I had in fact left them on the table at home.

That was over 10 years ago, and what that taught me was always to have a spare set of pills for that emergency of being caught out by circumstances I could not control.

Pills on a rampage

My fastidiousness with the medication is a complete turn-around from before I was started on antiretrovirals, for I had many fears and concerns, initially, it was the thought of the pill burden; the number of pills I had to take any number of times in a day and for how long. I heard people were taking pills in the double figures more than once a day, the medication had to be stored in the fridge and much else, but that was HIV medication history.

I had my own baptism of fire into pill chaos, that was after I was discharged from hospital. I had a whole range of pills and medication, antiretrovirals twice a day, opioid pain management every 3 days as a patch on my skin, different pain killers and analgesics addressing different kinds of cancer pain, thrice, four times, and six times a day, some depending on need, anti-emetics, suppositories daily, then chemotherapy, every three weeks.

For the first few months, I was occupied and preoccupied, this was the world I was afraid to entertain before I fell ill, and I told a few friends as much. My reality brought the requirements for this pill Armageddon, I could understand how the prospect of what might be ahead could scare anyone, it is a complete recalibration of life and lifestyle to meet your medical needs.

Each case is unique

Then, side-effects, too much information swirling around, and I had a good few from the obvious, as nausea and vomiting, insomnia, diarrhoea, itching, bloating, tics, and other kinds of discomfort, the loss of taste for proteins, like I lost my taste for fish or eggs when I was on chemotherapy. However, it was all that preconception of entering any kind of HIV therapy that became a barrier to my seeking medical attention as soon as I should have.

I can say now that there are so many improvements to antiretroviral therapies and medications, the pill burden is much less, usually one combination therapy pill daily, the side effects are not as bad, apart from a slight high some 90 minutes after I take my medication, I am fine. I prefer the regularity and routine of pill-taking to the possibility of an injection every few months.

Blog - An injection for my pills

The pill keeps me well and healthy, my CD4 count has risen considerably, and I have had an undetectable viral load within two months of being on antiretroviral medication. I have been on the current regimen since May 2010 apart from a 2-month trial of another drug in 2018 that did not work for me.

Blog - 12 Years on ARVs

The pills are out of patent and sourced as generics, each circumstance is different, but despite what we have heard or read, we must always avail ourselves of treatments tailored to our needs rather than out of the experiences of others, no matter no similar the symptoms are.

In Telling

In Telling: The spirit that sustains

Do you feel the way that I feel?

Words with changing meanings

It is amazing how reading the meaning of a word in the past can have such an impact on your perception of the word as culture and norms shift. The impression you have of the word and its use in language in contemporary times might leave you shocked.

I know how knowing the use of certain words like 'bastard' in Nigeria could almost be a word of endearment in English, not carrying the original meaning of shameful illegitimacy at birth or of not having any acknowledgement of forebears. Derogatory as it might be depending in tone, it can be a synonym for rascal and that is not so bad as it was on a school report half a century ago.

Whether or not

One such word I used today in conversation with my mother about someone else was hypochondriac. She thought it was quite strong a word to use in terms of this other person. “A hypochondriac is someone who lives with the fear that they have a serious, but undiagnosed medical condition, even though diagnostic tests show there is nothing wrong with them.” [The Center for Treatment of Anxiety and Mood Disorders: Hypochondriac]

Yet, the word did clearly describe the situation without equivocation. It is understandable that once having suffered a condition that has been effectively treated, there might be a fear of it recurring. Doubtless, it is important patients are listening to, respected, and treated with courtesy. Essentially, they need to be believed, given not just the benefit of the doubt along with the full complement of medical attention and tests to verifiably prove the presence or absence of ailment.

With a sympathetic view

However, once the absence is proven and the patient takes a second opinion, without new discoveries, the condition might well be an anxiety disorder, to be addressed rather than ignored. Maybe, I am a bit ambivalent about this and I have to suggest all conditions regardless of the medical opinion need some sort of treatment and indifference is not one of them.

I guess the danger in the meaning of words is hypochondriac can be dismissive when it should be immersive, concerning, involved, and engaged, for the sake of the person presumed to be suffering from it and those who have observed that it might be the case.

Thoughts I had today

I am on a journey,

The destination is unsure,
It is an interesting voyage,
On calm and stormy seas.

Laid down on a gurney,
In pain, I do endure,
Burdened with such tonnage,
Of life not all at ease.

Then on bended knee,
For love that is so pure,
And now we set the stage,
To do things as we please.

Thought Picnic: Winning the battle under my skin

Helpless to helped

I have no easy answers to my difficult problems, I look for opportunities where there seems to be no prospects. In my history that appears to have cycles of experience, I steel up myself with that inner voice, I will come through this and come through well.

Yet, beneath my skin, under the façade of cheeriness is a sense of foreboding, my human frailties almost determined to shake me into panic as I attempt to hold back the pressures that seek to overwhelm me.

Draw me closer to peace

There is a comforting voice I need to hear, it comes from somewhere in my past, a miracle today for which I cannot find reason nor explanation, just an overflowing of gratitude that good fortune and blessing has decided to come my way.

The battle between my ears is raging, the expectation of the wonderful against the terror of dreadful. The better to the best will win out because that is the story I have been frequently blessed to tell. That from the depths of my despair when nothing I had or knew could change things, a light showed up, a hand grabbed me, a voice soothed me, my peace came in as all worries and anxieties took the flight to a place of the forgotten. Everything that bothered was smothered and sorted out completely with much to spare and share.

I am raining on the inside with no shelter yet to keep me warm and dry. I have hope, this turmoil is on its way out, it will pass. I am living to laugh the loudest last. I have not abandoned the faith to soar.

Thought Picnic: I will remain curious and work on it

[]

Who is me again?

Recently, I think I have been searching for a better understanding of myself, a kind of review of my past, my present, my prospects, the circumstances in which I find myself, what might need tinkering with and what other things must radically shift.

I guess I am constantly challenging myself to appreciate if I am achieving and contributing, whether my ideas are sound and what I need to do or where I need to go to get inspiration and insight for whatever I am faced with. There are days I do not think I have done much and there are many caught between the shame of being slothful, the guilt of not achieving my goals, the embarrassment of being caught out and the humiliation of being shown up.

Finding my place of vulnerability and being able to deal with it is still a process, the way I find it difficult to ask for or seek help when I need it most. I am working on finding the voice to fix the things I am uncomfortable with.

Guarding the influences

This Coronavirus pandemic lockdown where you are left alone and with your own thoughts, many influences begin to insert themselves in your life, usually from social media and television. I do manage my television influences better than I do social media, especially Twitter. So much jumps out at you to enrage you that you need to condition yourself in terms of initiation, engagement, response, contribution, restraint, disengagement, or indifference.

Then, I am getting better at extricating myself, I do not need to be drawn into issues that drain mental energy, denigrate, or are unedifying. The unpersuadable are just unpersuadable and it is important to see the trait early before the fruitless frustrates. Most importantly, know the unnecessary for it is unnecessary, something to be ignored and where the temptation to tweet must be resisted for your good.

I will remain curious

As I go through this developmental process, I have been trying to find fulfilment in the things I enjoy without having the things that drive others define my sense of achievement. Listening to a number of discussions from many interesting people, the pep talk is quite off-putting to the point of detestation.

The life coaches and motivation speakers who go on about using this period of sequestration or rather retreat to say you should focus on something, have a purpose in life or pursue your passion, without which you have underachieved leaving you an anxiety wreck as you realise you have let another day slip useless away, again.

Blog - Thought Picnic: In the days of useful ideas

Elizabeth Gilbert in a recent TED discussion brought in a new thought process, suggesting we exercise curiosity; a kind of interest probably in the mundane, which I do so well, observing beyond just seeing, the stakes she said are lower, there is no anxiety, for looking closer brings to light things easily missed.

I know I am curious, it feeds my learning, the learning to love myself more, it brings insight, it is questioning, precocious, inquisitive, challenging of the norm and I might just end up being proud of myself, grateful of the wonderful people and things that enrich my life. I think I am comfortable with that.

Opinion: Supermarket chains are not just noticing empty shelves

Affected in some ways

I guess if I did answer a phone call any time soon, one question that would feature would be about how I am affected by the Coronavirus. Now, if someone from Yorubaland did call, I would get a greeting related to the event, the circumstance, the achievement, or my feelings.

But then, what is Coronavirus to me? It is quiet and I have made three phone calls with only the option to leave a voice mail. Whilst I am happy to sit at home alone for extended periods of time, I have decidedly pulled up the middle Venetian blind in my living room to let in natural light. This afternoon, the sun reflected off a windowpane across the road into my face, it must have been a glorious day.

The self-enforced self-isolation is fine if it is my decision, but when it is advised from an external situation, the satisfaction with being a hermit is challenged by a feeling of being imprisoned. I can handle it.

Everything is closed

There was one final notice I was expecting to see because my apartment complex which is a village of 6 apartment blocks has a games area, a gym, and a swimming pool. The leisure centre has been closed until further notice. It should not bother me because I have hardly visited the gym, but the thought that I can’t, makes it feel restricted.

Turning on my television, I am regaled with the news of empty shelves in supermarkets and the argumentum ad passions deployed regarding the elderly and NHS staff unable to get essentials from the shops. I do honestly sympathise with these people, but I am not surprised that people are stockpiling beyond what they need.

Government generated anxiety

The fact is people are concerned and they are afraid, the feeble assurances given by the government does not engender any confidence that essential goods would always be available. The communication strategy of the government has been muddled at best as they have flown kites about possible lockdowns or restrictions to movement, the natural reaction of the public would be to adversely react. It is, selfish and inconsiderate behaviour, not in any way unexpected.

The blame for this lies majorly with the messages of the leadership. If you cannot inspire confidence or persuade people of the greater good especially after the division that has dogged our society for the past few years no appeal to good nature would suddenly make the selfless out of the buffeted by uncertainty, worry and concern.

Blame supermarket lethargy

Supermarkets would just have to rejig their logistics to fulfil inventories in these trying times, supply chains would also have to become more agile and responsive to changing demands. The supermarkets cannot now say they are unaware that they are running out of bread, toilet paper, pasta, or hand sanitiser. They might not have been able to anticipate the run on goods, but they could have done more to address the shortages once it became obvious.

That in these highly automated logistics environments, they have not been able to scale up and adapt to changes in demand or adjust their supply chains suggests there are fundamental flaws in the system that the Coronavirus pandemic has exposed. Also, assurances from the supermarkets have to be met with commensurate action; stock the shelves.

Meanwhile, those who thrived on gaining political power with lies, proffering easy answers to complex questions have now been met with an intricate conundrum that hyperbole allows us to suggest has not been encountered before; the inept are now in government.

In my case, I would just go for a walk around the block and maybe sit in the gated village garden to meditate. This will pass.

Not perturbed by mountains

[]

A weight of waiting

I sit in the quandary of mind, far away a dear awaits the notice to act, together we wonder about the near and the far, unsure of what it might portend.

Yet, an agreement does persist that regardless of what we eventually learn, it would not stand in the way of what we have planned. In the waiting is some anxiety, it deigns to sap the reserves of hope and expectation.

We would not faint in the quest of what is happening between us, for the consideration is deep and the purpose is crystallising into something dreams are made of. Gems and treasure gain value in the labour expended, of time, of toil, of trial, of test, and of testament.

In that, there is assurance, that hurdles would be skipped, mountains will be scaled, obstacles will be overcome, difficulties will be solved, rivers will be swum, forded, boated or bridged and at the end will lay a prize that no one will be able to take away.

In our talk comes the comfort from turmoil and in our conversation is the calming of the nerves, we like iron sharpens iron, strengthen each other, supporting the waning to bring it to the thriving.

It is a little setback that gives way to great opportunities, in that, we are confident that love does conquer all.

In maternal discomfiture

In maternal dispute

Just about 6 months ago, I went for a neurological diagnostic test just to ensure that my concerns about memory and reaction were not a systemic degeneration of my capabilities, though for what I had noticed about my concerns I had designed elaborate compensations for.

Blog - My HAND on my head - Memory Screening Tests

It so happened that all my considered reflexes and powers of recall were fine even if order and precision were not exact, my consultant did not think there was a problem. However, he did recommend I do a barrage of blood tests just to determine if there were other treatable conditions to assess.

The results of the blood tests suggested a Folic Acid Anaemia Deficiency (FAAD) for which I was to take Vitamin B12 and Folic Acid supplements.

Blog - Folate, I must, lactate, I can't

Keeping the flu at bay

To deal with the FAAD, I got Folic Acid 400 µg from the pharmacy and was not particularly comfortable with the label that suggested it was for pregnant women as it contributes to maternal tissue growth during pregnancy. As it transpires, everyone needs Folic Acid for cell growth and development, and this should be obtained sufficiently from diet except when pregnancy demands more than is supplied in the diet.

This morning I called my General Practitioner to schedule my influenza vaccine which I took for the first-time last year and has on the recommendation of my consultant to be taken annually. I was given an immediate appointment from an hour hence and I walked up two streets to see the nurse.

When I was called in, after the basic formalities of my identity and a few questions about reactions and allergies, she brought the vaccine out of the fridge, pricked the upper shoulder muscle of my left arm and injected me. I am usually surprised at how they call the prick of a needle a scratch because it is not. However, the needle is quite thin that it rarely bleeds after the injection.

In maternal balance

Then I asked about a possible Vitamin B12 injection booster that my consultant told me of at our last meeting in September, but the nurse needed to see recent blood tests to be sure of whether that was necessary. Going through me online file, she found a recent letter from my consultant which indicated my FAAD issue had gone and my readings had returned to normal.

To be honest, I was not keen on the Folic Acid supplements and I only took fortified cereals for breakfast for a few weeks. I am not a breakfast person, but I was glad to learn of the development, though surprised that I had not yet received a letter from my consultant about my latest blood tests from September.

A slight discomfort from the injection and I will be fine.

Thought Picnic: To the gym for a Jim?

Sweet tooth dilemma

I cannot deny I have always had a sweet tooth, a characteristic of which has gone to war against my dentition from decades ago. Whilst I count myself more a tea-drinker than a coffee-quaffer, the beverages have required sweetening and milk.

Then I started changing elements of my diet out of concerns for my health at first and to address some fears of body dysmorphia that might accompany a certain age. I have thankfully never been fat, but I am a bit troubled about things getting out of control, like bundles of unexplained tissue at the back of the neck and a tummy ballooning into an embarrassment.

My medication can change the physiology that some people can be susceptible to lipodystrophy where fat deposits show up in parts of the body to cause discomfort and possible deformities.

Figures and numbers

Maybe if I spent a bit more time in the gym and took up swimming as I have always wanted to, I could bring that and the other under control. When I had cancer some 8 years ago, I lost a quarter of my body weight, having had a 32” waist for as long as I could remember, I was down to about 28” that my doctor in discussing the change to my physique wanted me to gain back all that I had lost and a little more.

I have never been comfortable to gaining back all of it, I would rather I was 10% to 15% short of my peak weight. Besides, I have too much of a head for the numbers in checking the Body Mass Index (BMI) or making metric comparisons between height and weight where I imagine you are fit if your weight in kilograms is less than 100 units taken from your height. So, the comparison for a typical height of 6 feet which is 183cm should carry a weight of 83kg or less.

I guess that thinking, especially for males, belies a predilection to physical attraction defined as slim, slender or skinny, which would put the weight at lower than 75kg. On matters of body dysmorphia, one can suddenly be quite fickle, for both oneself and others.

Changes to diet

On my diet, I started with taking the Maggi essence out of my cooking completely, I am good enough in the kitchen to make tasty food without enhancing it with additives. Though it is not what I would get from eating out. One radical change was when I stopped putting sugar in my tea and consequently stopped having it in my coffee too.

It was not an act of the will of determination, I just decided to try it and then concluded, it was doing me no harm. It has not knocked the kilograms off the scale, but I am a bit happier for it. My next activity has been reducing salt in my diet too. Along with this change, I rarely take fizzy drinks, drink more water and where I make yoghurt shakes, I use honey as the sweetener.

To the gym for a Jim?

I probably can shed a lot of weight by doing more exercise, my three months in Edinburgh involved walking to my office, sometimes up to 2 kilometres each way, even if I could get a bus. I thought it was good exercise.

However, the struggle remains to maintain a fitter body into my 50s without getting obsessed with the way I look. This blog shows I am a bit concerned, I just don’t want it to take over my life. That is my fear of body dysmorphic disorder.

My HAND on my head - Memory Screening Tests

Now I Remember

‘It loves the brain.’ He said. In fact, there are many things that go after brain for all sorts of reasons my lack of medical expertise cannot explain.

Quite particularly, sexually transmitted diseases, everything appears to happen down there and once contracted they want to travel to the very top and take control. Nature seems to have beings in the ascendancy.

I had an appointment at the hospital on Thursday, if I can remember clearly, I thought it was in relation to the abdominal scan I had just two Saturdays ago since the letters literally arrived at the same time.

I took an Uber cab for the 9:50 AM appointment which was on a surge pricing and we made it on time without any of the stress of the appointment before the last. Ushered in by the staff, rather than stand on weighing scales I sat on one and it appears with clothes on, I am dropping kilogrammes.

Correct in my assessment

My blood pressure also read within the limits of acceptable for the first time in 4 visits which was really good news for me. I was called in to see the consultant where I was told it was my appointment for the HAND clinic or the Memory Screening Clinic.

Now, for a person above 50, I needed to be sure that certain elements of my activities in forgetfulness, responsiveness and anxiety which I somewhat have found compensatory mechanisms for were either age degenerative or as a result of my long-term condition.

The session which lasted almost 90 minutes started with filling in a Hospital Anxiety and Depression Scale form that pointed towards elements of anxiety that needed a bit more analysis. However, since this was our first clinical assessment, much was dependent on what I subjectively thought were issues bothering me.

Suffice it to say, I completed that form and even annotated a grammatical correction to give a sentence a finality in context rather than the open-ended inquiry. Then I was passed the 'Questionnaire for HAND clinic' that required long form writing and I probably gave a detailed treatise to about 20 or so questions.

Convention is indistinct

After that, a number of cognitive tests were performed on transcription, memory, recall, acuity, reflexes, alertness and so on.

One such activity required drawing a clock with time 10 minutes past eleven, I went for a square face with 4 cardinal point numbers and then the minute and hour hands. A majority, I was told, draw a round clock face with all the numbers in before putting in the hands. Minimalist and functional works for me and that was some reflection on the kind of personality that I am.

I was good with the numbers tests, but I was never able to recall the words in the right order, even though every time I got all the words right and then after ten minutes of other activities. The reflexes seem to be fine and it would appear I have good cognitive skills that fall well within the standard deviation of normal.

Remember to smile

It would take a couple of tests over years to determine if there is any degeneration and whether through the results of the blood tests there are other noticeable indicators that can be controlled with reference to my thyroid, my liver, blood counts or folate functions. I might be in for a computed tomography scan of my brain – awesome, but will not be keen on a lumbar puncture for the drawing of cerebral spinal fluids.

By process of assessment, analysis and elimination, it is good to have this kind of activity in professional hands than leave it to my personal perception and watch some deterioration as a matter of course. It would appear there is not much to be concerned about, but I can in future request clinical psychiatric assistance if needed.

The ‘It’ at the beginning of the blog is HIV and the HAND is HIV-Associated Neurocognitive Disorder which in my 15^th year since diagnosis, though on my 8^th year of treatment seems to be well managed with an improving CD4 count and an undetectable viral load. All other indicators from my blood tests of two months ago seem fine too. I guess I remembered most of what happened and kept some back for privacy.

Everyone with HIV should consider attending a HAND clinic and at least every 12 to 24 months thereafter.

Hospital: That was brutal

What a start

Wednesday could only have been termed brutal in more ways than one, I returned home from the hospital and just went straight to bed to sleep off the feeling.

It was my biennial check-up, the one I was prepared to go for a month ago, only to realise that it was a month later. I got my appointment card and called an Uber cab to take me to the hospital and that is where my physiological problems began.

The Uber driver in the quest to cut out traffic ran into road blocks and other traffic that the 40-minute leeway I gave to getting to the hospital was being eaten up that I was getting anxious. The journey only takes 20 minutes, I arrived, just in time.

The pressure of the world

Then through the labyrinthic corridors to the Out-Patients’, I wended my way, half-hobbling and almost reduced to panting when at the reception I realised that I had forgotten to put my appointment card and treatment journal in my pocket. Though I did not need that to identify myself, I was at that point flustered when I was directed to sit in the waiting area.

Minutes later, I was called in for a weighing and blood pressure assessment. My weight has been going down, but the numbers that came up for my blood pressure were astronomical, both the systolic and diastolic measures in the 3 figures.

We tried the other arm, but I was already in a state, the numbers did not radically change. The nurse opined as did the doctor later on that certain patients have a white-coat syndrome that heightens their blood pressure in a hospital setting and that hospitals are rarely the best place to take blood pressure measurements.

A doctor I miss

I did not think I had a white-coat syndrome, I have known the inside of hospitals from the day I was born, there had to be other factors. My little sleep, the Uber ride, my forgetfulness and any other factor that is as yet undetermined. I did measure my blood pressure in the relaxed setting of my home yesterday and the numbers looked within the ranges of normal.

I was meeting the doctor for the first time, he introduced himself as a registrar, I have lost count of the different faces that make up this department. The head of this department when I first attended this hospital some two years ago, an affable and friendly man with a gentlemanly mien and comforting bedside manner had retired and was out in Burma doing charity work. I last saw him in October and he was the one who suggested I had a big do for my 50^th birthday.

Then I had had the opportunity to research the incoming head before I met her in the middle of the last year, we got on quite well. However, as the new doctor began to go through my notes, his apparently calming assurances left me in more discomfort and anxiety than I have ever felt meeting consultants in the last 8 years.

The whole works and working over

Maybe it was a confluence of events, but by the time I had seen a few more unpronounceable names to do with my liver, my kidneys, my gall bladder and my bile ducts, none of which on further research back home presented an alarming set of circumstances, I felt like I had gone in for acne and ended up in intensive care.

He was being thorough, at least that is what he told me and invariably, my drug regime might be modified in 6 months’ time based on cost, and I have a battery of tests to follow, bloods, liver scan, cognitive impairment and a ‘non-judgemental’ review of my sex life. Then he put my numbers through QRISK to determine my susceptibility to cardiovascular disease within the next 10 years and having stopped smoking 33 years ago, I was denoted an ex-smoker rather than a non-smoker; technically, he was right and thorough, if not pedantic. It was the full works and brutal.

I took copious notes and at the end, we did not even have a customary handshake before he was out to pick up the notes for the next victim, sorry, patient.

That was brutal

I put in my prescriptions at the pharmacy and joined the long queue at the phlebotomist’s, where a bit of gallows humour appeared to lighten up the day. When someone asked if they had lunch breaks, I quipped as to whether vampires ever took breaks from bloodsucking.

When I finally got home, I just went to bed, too much had happened in such a short day. Yes, it was brutal, by all standards. I am not looking forward to meeting this doctor again and it is probably nothing to do with him, I was just completely ill at ease chatting to him.

Thought Picnic: It Can Wait

Frenetically consumed

I sometimes wish certain things did not so occupy my mind that I begin to pull all stops to want to do or achieve that goal.

Now, I know that travel serves a crude sort of therapy for me, taking me away from the routine and the mundane into an adventurously renewing situation.

However, most of the time, I travel on impulse, and I have done this over and over again, more times than I have deliberately planned for travel. I once embarked on a European tour of 8 countries with just 10 hours to plan it and go. When you are not travelling alone, you do need to align schedules with your companion.

Pathetically excused

Yet, to break away and get away has always been one of the freedoms of being single and unattached that I have exploited whenever I have had the means to do so.

This attitude sometimes drives me to distraction, flights not when you want them, hotels on the outskirts of town except of you want to break the bank and other kinds of inflexible options that are not options but restrictions, you begin to tire of all the permutations and finally come to the conclusion – it is probably not worth it – leave it until some other time in the future.

This is where planning comes handy, because having seen the restrictions of immediacy, you probably can mitigate for those by getting better options than shelling out at high cost for minimum satisfaction and fun.

Yes, I do want to get away as soon as possible, I have decided, it can wait. Peace!