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

Thought Picnic: Deny bad strangers a hold on you

They do not know you

In considering the attitude of some people to others, I found myself thinking about how we could allow complete strangers to influence how we think about ourselves to the point of dejection that we become unhappy about ourselves.

Be careful not to rate the approval and approbation of strangers over the acceptance and love of those you know. A fleeting rejection should never define your self-worth or your existence. That you have not been liked at a point in time is just an episode that quickly passes on, not to be agonised over.

Let strangers be insignificant

Usually, that situation is a factor of them speaking more to their limited sense of appreciation than of you and who you are. Knowing this will give you peace and a sense of perspective, for strangers are just that, strangers. Until someone gets to know you, they don't know you. Even if it is lasting, their first impression is just theirs alone.

You may never encounter that stranger again, so, why let them dwell in your memory and experience? Obviously, how they made you feel or treated you might be bad, unfair, and unkind, but they make up an insignificant proportion of your existence, and do not give them a platform where they should never even have a toe hold.

#PartyGate: Of the conceited kakistocrat of 10 Downing Street

He is impervious to contrition

It has come as no surprise, at least not to me that Prime Minister Boris Johnson has indicated that he has no intention of resigning after the submission of the #PartyGate report, in fact, after having escaped the necessity of The Queen demanding his resignation after he lied to her majesty on the illegal prorogation of 2019, it was obvious that he has no character, dignity, integrity, embarrassment, sense of responsibility, or shame that could lead to his relinquishing office except by the loss of an election. [BBC News: Sue Gray report: Drunken No 10 party culture in lockdown laid bare]

What is disturbing is the realisation that the United Kingdom is in the unconscionable grip of a kakistocracy never seen in the performance of government ever. A man who has had an undistinguished record of being unable to acquaint himself with the truth that he would lie with such ease and no pang of conscience, who is ready to abandon international treaties that he himself negotiated and signed because of the inconvenience that has exposed his double-dealing and perfidy is not on a journey to become a better man.

Here is one who does not believe he should be held accountable for anything; he constantly gets away with impunity even as his acolytes have joined in his way of doing things to preserve the perverse. Apparently, we met with Conservative MPs and said he was sorry, just like the boy who cried wolf and they believe him. Boris Johnson in his arrogance and conceit is incapable of contrition, but more fool them, as they know who he is and now choose to vouch for his honesty and sincerity.

An unprincipled lot

When friends suggested his brush with a possible COVID death might moderate his outlook and behaviour, I knew Boris Johnson had no redeeming quality that could help him reflect on infirmity or adversity to see a reform of his character, he is utterly rotten to the core. Sadly, his party has become the freemasonry of the unprincipled that would coalesce rather than rid themselves of this pox on our democracy.

If truth and justice cannot be the lodestar of our government and democracy, you can only wonder what these people would allow to happen, if they ever think there is any need to have any sense or purpose. The handful of Tory MPs that have any semblance of integrity are too few to move the needle.

Self-interest rather than national interest is the guidance for most of them and some would be let out like rabid dogs on our televisions to defend the indefensible perfidiously that Beelzebub the father of lies would find himself an amateur to their parselmouths.

Somehow, we are just left with no other choice than to watch and hope that they would exhaust themselves and go the way of oblivion with history judging them as the worst that has ever come to power, the bookend of Queen Elizabeth's amazing reign besmirched by an intolerable government.

#TheAIDSMemorial #WhatIsRememberedLives Chris Clark

 

Chris Clark (1973 - 2009)

The AIDS Memorial

I follow the Instagram page of TheAIDSMemorial where the theme of #WhatIsRememberedLives memorialises the many who lost their lives to HIV/AIDS, some many in the late 1980s into the 1990s and even after.

I lost many friends to the plague, and I also made many friends who live as witnesses to the wonders of medicine that now keeps many of us alive. Some were really close friends and their loss shook me to the core, then, one was a lover, for whom the unexpected and sudden realisation of his demise is quite difficult even as I was fighting for my own life on the diagnosis of AIDS and cancer.

Many of us in losing friends or partners of a sexual minority rarely had support or comfort for our losses and grief. Some were ostracised or excluded from the obsequies of people they loved in life out of secrecy, shame, animosity, stigma, or denial. In The AIDS Memorial page, we find an opportunity to remember and ensure those significant relationships are never forgotten.

Of loves lost

That lover was Chris Clark, and this is the only picture I have of Chris Clark (May 30, 1973 - c. October 14, 2009). We met online in late 2003 when he lived in London and I in Amsterdam, there was such an attractive quality about him, his story, his experiences, and his ambitions that drew me to him, I guess I was smitten by that personality.

We tried hard to build a relationship, but I was unsure of what it would entail, I guess I was once afraid and I was lazy about the prospect of a long-distance relationship, I should have been bolder, but I learnt hard lessons in the process. He came to stay with me in Amsterdam when I realised that my cooking was too spicy for him.

Other places we met up for snatches of affection and more were in Berlin and at Playa del Ingles, it didn't bother me footing the expense, I was never able to use my head when it came to Chris, I was all heart and no sense.

In pain and in forgiving

His mum threw him out of their home at the age of 15 when he declared his homosexuality and somehow, it fell to a stranger who took him off the streets of London and then to the United States of America where he finished school and tried a career in film and photography.

Later, he moved to Amsterdam with a partner who sadly committed suicide by drowning in a canal. Much as he had hardships and challenges in his life, the parents who rejected him as he was growing up could not trust any of his apparently responsible older siblings to care for them as they were dying, they called on the humanity of Chris to give them the send-off they desired, and he acquitted himself well in that regard.

He lost his mother in February 2007, she died in his arms and his father in December of the same year, he bore the full cost for the funeral arrangements whilst the siblings quibbled about the estate. His father left everything to him as for everything they did to him, he was the only one that could be trusted to do right. Chris had a large and forgiving heart. I tried to offer emotional support in the absence of family, we last met up greeting in the new year of 2008 in Playa del Ingles.

When he died

He became HIV+ probably a few years before I did, but there were times when he did not have enough to eat in support of his essential medication. I sometimes think he allowed his condition to deteriorate over time. We grew estranged though we maintained sporadic communication into 2009 when my health slowly descended into full-blown AIDS I was hospitalised in late September 2009.

He constantly asked after me sending me text messages I did not promptly respond to, I felt Chris was too deep in my life in some of the things he did that I needed to protect myself, my heart, my emotions, and my mental health even as I was besotted with him. He invited me to Facebook which I did not respond to until after his passing.

I left the hospital on the 9th of October 2009 and as I was settling down just over a week later, I sent a message to his mobile phone and got a shocking response from his flatmate, Chris had died at home of renal failure just around the 14th of October, a few days after my discharge from hospital.

A memorial deserved

I had many fond memories of Chris, and I grieved his passing for many years. One Christmas, I did get the Christmas tree we argued about because I did not want one and he did. It was one way of memorialising him. In fact, I grieved alone sometimes leaving a message on his Facebook on birthdays and the supposed date of his death.

I thought I would never find love again until it took something so extraordinarily special that first reminded me of Chris and then informed me that I could move on from Chris, it took over 9 years for that to happen. He had that cheeky smile, a dry sense of humour, a way of pulling at your heartstrings and a wonderful personality.

I have wanted to write this for a long time, thank you Chris for sharing some time and love with me. Akin Akintayo

I wrote an AIDSMemorial page for Chris Clark in two parts, Part I and Part II, this blog fleshes out parts that I did not include for space constraints.

In Telling: The spirit that sustains

Strength from within

I sometimes think about the effects of illness and how vulnerability and infirmity change your outlook, your inadequacies are exposed in ways you can never have been prepared for, and you are left with just your spirit to sustain you through it all.

In many ways, you cannot account from further than the next tick of the clock, for the pain, you can only have so much medication to dull it without putting you into a stupor because you still need to function in some way.

Then you wonder about the incredible resilience of our being, for whether we survive or not, there is no accounting for the strength that we usually never know we had. It is like you are tested to the limit and then some, if your body can just tolerate what it is put to it, providence and fortune might give you a story to tell.

In the passage of time

I am humbled by my experience and then I think about the fact that when I went for the Spring booster the NHS website failed to provide adequate information for when I was registering, I am not considered in a vulnerable cohort of the immunosuppressed, because my CD4 count is not over double the minimum threshold, though I think my medical history should make me eligible.

Whether it is good or bad news is beside the point, what I cannot afford at any time is to contract the Coronavirus and so, I still wear my face mask in enclosed places, avoid crowded spaces, and take necessary precautions. That is just how life is today.

A story to tell

I was chatting to my best friend last week and he asked that I consider writing about serious illness, how people face it, and how we try to get beneficial outcomes against the onslaught of the medical establishment which may not always be acting in our favour, especially when the experts are too arrogant and self-important to listen to our own perspective of what we are going through and what it is we need.

I am not quite sure of how this would go, but I can only write about my own experience and I hope those who read my story might find something of help or usefulness, I guess that is just what I will do.

Thought Picnic: Knowing allies from the lies

Knowing an ally

An ally is a person or organisation that cooperates with or helps another in a particular activity.

Allying is combining or uniting resources or commodities with (another) for mutual benefit.

Earlier today on Twitter, I read of someone who was withdrawing his allyship with the LGBTQ+ community because we were not worth supporting. It read so totally like the typical self-important delusion of grandeur of someone who was never invested in a cause, they are like hit-and-run perpetrators of opportunistic lip-service that once engaged on their perfidious and superfluous premises become disillusioned castigating others as ungrateful as they lament their thankless situation.

Allies are invested

Indeed, all minorities of any persuasion need allies, and their contribution to the arc of justice and humanity that affords us relevance, respect, dignity, and protection from abuse, menace, or violence is welcome.

However, before we had allies, we were who we were, sometimes living dangerously, but living, all the same, thriving, organising, and speaking up for ourselves that we were noticed enough for others to join cause with us in the pursuit of equality and justice.

Allyship is invested and engaged, rarely incidental just as fair-weather hoppers on trendy bandwagons are not allies, they are just notorious and garrulous self-interested, self-promoting parasites drawing attention to themselves and away from the causes, they portend to support. They have no principled stance, and they stand for nothing, their pretence to liberalism is everything but, they are utterly vacuous.

Allies stick with it

True allies usually do not walk away when the going gets tough, they have life-long investments and interests in the cause that they will not allow to be impugned or usurped. The cause is not external and abstract, they are involved sometimes through situations they cannot have accounted for.

I think of my parents as allies, for they have had to review their frame of reference to include something they do not understand. They have had to travel a difficult road into the realm of being directly affected, and this applies to many we have bonds and relationships with.

They have a gay son; what does that even mean in the context of their worldview? Yet, they resolved to accept the person and the personality of their son with all the difficulties and questions that entails. They demonstrate strength in embracing me with love and affection, prayerfully supplicating for my happiness and health, blessing me at every opportunity and bringing my loves and affections into the sphere of belonging.

Allies have heart in it

They decided that society, community, tradition, or beliefs will not define or regulate our relationship. I may be different, but I am still their beloved offspring.

These are the words of an ally, my father said, “You are my son, I will not reject you.” Then some faceless insignificant nonentity thinks I depend on them for allyship, existence, and fulfilment? I guess social media is a platform for ignorant self-aggrandisement and befuddling idiocy. I saw that today.

It's walking and it's working - XIV

Get on up and go

There are mornings that I have woken up early as I like to do my walking exercise at dawn just as the sun is rising and the city is less busy, apart from trying to avoid meeting up with that devil dog and its atrocious owner. Then I feel, I am not that up to it, I need a bit more sleep.

Often, I do levitate myself off the bed by the force of will and get on with it, because I am left needing to get that 10,000-step threshold in the reckoning or I feel I am losing something. However, I do not beat myself up, like for instance, in April, for the last 6 days I barely got 5,000 steps done daily because I was a bit indisposed, however, since I had more than the 10,000-step average for the month by the 20^th day, it was not that bad, it just pulled down the average for the year.

Just pressing on regardless

The walking exercise that I began in late July 2020 is a lonely and individual activity that requires some discipline, dedication, and determination, I want to believe that somewhere in my lazy bones, I have some of all that. I get up, come rain or shine, in the light or the dark, feeling strong or weak and get out to do the steps.

For a while, I was seeing no effects, my weight stuck up where I never wanted it to be, I could not for the life of me understand what else I had to do, I was not going to go down some dieting route or get into the gym to find muscles in places I never knew they could exist. I was focused on the walking, keeping at it and convinced that eventually, something would begin to show. Observations by my boyfriend during our video conversations did not convince me of the expected changes.

Improvements are showing up

However, in the last 6 weeks, things have shifted, I have gone from the highest weight that the scales have truthfully displayed to losing over 8 kilograms. I am not at the best weight I attained in October 2020, but I feel it might soon get there and better.

When I started walking, I barely made 3,000 steps in a half-hour, now, I easily breach 4,500 steps in 30 minutes, though I do not think I can make it 5,000 steps, even if Brian has suggested I walk like one of the cartoon characters in Scooby-Doo, at first I thought he was referring on the one of the four-legged variety, but it was one of the bipedal females he was alluding to that I first thought was Daphne, but he meant Velma. He says he can’t keep up with my walking, even though if he stood by the Eiffel Tower, his legs might just dwarf the edifice.

The statistics are an impetus

In general, I can get my 10,000 steps done in 75 minutes, I have even managed 64 minutes, which is good going. Today, I stayed in bed and then for my late lunch break stepped out for just over 11,000 steps and then after a post-work nap, I added just over 18,000 steps leaving me with around 500 steps to hit 30,000 steps, so, I went for a quick stroll down that street and back to get that number done.

The way my health app breaks down the statistics of my activity gives me an idea of how well I am doing, the times when I could do 7 kilometres in an hour seems to have eluded me, I barely get a kilometre done in 9 minutes. However, getting my heart rate up for intensity is good and I try to work within the aerobic and anaerobic range, the cadence is usually around 140 steps a minute, though my eyes almost popped out when I saw 174 steps a minute this evening and then 177 steps a minute in my earlier walk. I must have been gliding or floating on air as I rarely get 160 steps a minute for my morning walks.

As a creature of habit, the morning walk has a route that yields just over 15,000 steps in 1:50 hours or less and that is before I start work at 8:00 AM. Even without an accountability partner, someone to imitate, or the urging of a coach or mentor, I can say more confidently that it’s walking and it’s working.