In Telling: Not knowing there is help for you

Not knowing your dues

Understanding how to get help can be a handicap for people who have generally been self-reliant and independent. Having been schooled on self-sufficiency through grit, determination, and hard work, one can so easily be lost when the tried and tested modes of living and existing fail.

When some thirteen years ago I fell so seriously ill with cancer and the treatment meant it was impossible for me to consider returning to work as I underwent chemotherapy. Living in the Netherlands with all the accoutrements of an EU citizen and fully paying my taxes, I was unaware of what support I might get from the state. In fact, I did not think I qualified.

There was one month when I literally had nothing, but for the generosity of friends, I might just have one day expired on the floor of my living room and then would have been the end of all my troubles. However, it was one of the unique elements of the Dutch health system that they were not just concerned about my physical health but also my mental health and how I was getting on with life.

Support beyond the medicine

On one of my hospital visits, the nurse asked if I was getting any income support and when I responded in the negative, she was quite taken aback. She insisted that having worked in the Netherlands for almost a decade, I should have contributed enough to the system for such situations as my inability to work because of ill health.

She did not leave it at that, she marched me to the social security support office in the hospital and asked that they take on my case. Immediately, I was given forms to fill and I typed out a cover letter explaining my circumstances. The office fast-tracked the application to the responsible department and within the week, much-needed financial support arrived at the highest accessible support payout, backdated 6 months, which was the maximum that could be allowed.

Getting the help needed

If I had known any better, that application should have gone in at least 8 months before. Yet, with that lesson learnt, it is not that practised. The default inclination is always to be actively and fruitfully engaged in employment than depending on welfare payments.

It delays the necessary work of seeking support because you have the mind that things are on the turn and the reality is as days turn to weeks and weeks to months, that passage of time means what could have been done, is not done.

By the time you realise or understand that there is more than adequate support available, your situation is almost hopelessly dire. It is strange, yet troubling, the many who need help sometimes just do not know what help is available and how to access it.

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

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.