Onwards and Upwards?

 

Here we go again, this time into more uncharted territory.  The big difference is that this posting is made at a time when I finally know what on earth has gone wrong with my health over the past two and a half years! So it’s rather more personal than some other postings.

It was just 4 months ago that the cause of my troubles was at last identified and that I could, finally, start considering, and accepting that I could now be on the last leg of my enforced sojourn into the realms of serious sickness. Imagine that, to finally have a good idea of what getting better could actually mean?!

“There is one consolation in being sick, and that is the possibility that you may recover to a better state than you were ever in before.” – Henry David Thoreau

So at last – this is what happened

I’m finally being treated by a very caring multidisciplinary team of specialist medics at the Royal Free Hospital in London who are knowledgeable about what ails me.  So after all this time, what is it that’s caused my sickness?  Basically, it seems that most parts of my body, and brain, have been attacked by a form of TB infection (but not my legs…).  Unnervingly, the cause was BCG immunotherapy treatment used to help prevent bladder cancer. The cancer’s gone but part of the treatment left me with considerable damage.  I’m now on a lengthy course of antibiotics, alongside measures designed to improve my weight and general fitness.  This regime is in place for 12 months – after which I can, I hope, finally be on the mend for good.

Whew! The mystery ailment finally identified and a treatment plan in place. And yes, the ‘story’ was complicated and dramatic and sorting out what happened was tricky and upsetting.  Even now we have a solicitor who is attempting to help to unravel exactly how I’d been made so unwell by various actions and inactions of many medics. I don’t think that I want revenge, but my health was seriously damaged by some others’ actions and omissions, and I have more or less lost a number of years of health and full personhood as a result.

Quite an impact

Psychologically this has all been pretty devastating. Over two and a half years previously, as I described in an earlier post, I had ‘woken up’ in a large hospital in the midst of a delusional state.  Various parts of my body hurt or ached and I found that I had forgotten significant numbers of facts, especially about myself. Subsequently it seemed to me that each of my more lucid periods were, or were something like different iterations of my personhood or, to put it another way, I felt I was waking up each time with new or different versions of myself. That may appear to be fanciful to some, but this was the only way in which my damaged brain could make sense of the kaleidoscope of impressions it was receiving.

Indeed, the mental impact of this medically induced illness has been even more damaging than the overt physical impact. Perhaps foolishly, I feel that recovery from the physical aspects of the illness will be easier than recovery from the mental aspects of the ailment. I was left with muscle wastage and weakness and a weird numbness in my feet, some of which should be sorted out over time. But the mental and emotional effects of being ill for so long with no clear diagnosis, plus some memory loss caused by the bug, are far harder to deal with.  Indeed I don’t know whether a full or extensive recovery is possible and what recovery really means.

I think that some degree of rehabilitation is possible but again it is difficult to say what proper rehabilitation actually entails.  Then there’s the considerable impact this has had on my wife, and others close to me, now and over the last couple of years. I still do not really know the full extent of the impact of what has happened on those I love and who care for me, though I’m gradually coming to appreciate just how much it’s been. This is all really difficult to express but I think that having a serious illness can make one very self-centred and self-absorbed; and you almost lose the habit, as it were, of appreciating significant others.

You are also likely to become less self-reliant, I know that’s true in my case.  Spending large amounts of time as a hospital inpatient can make one very dependent on others; even meals (however bad they are) get delivered on time. I didn’t have to do anything and, for a lot of the time, I would have found it very difficult.  And there is of course the ineluctable fact that one is dependent on others, especially doctors, but there may also be an element of learned helplessness at play, often a result of loss of confidence which needs to be regained.

Just about all of these factors have been amplified as a result of the isolation measures created as a response to the Covid pandemic of course.  So I think that these are the main reasons for the increased ‘selfishness’ among hospital patients and those recently released. And another force at play arises from the sheer fright experienced as a result of having old and familiar certainties swept away by unforeseeable forces and the unforeseen consequences of illness, which for far too long remained unnamed and undiagnosed.

The future puzzle

So I’m left to puzzle over what recovery, or rehabilitation, could mean for me during and after this serious illness.  I’m sorry to have to say this – however good the clinical care is, there are still severe conceptual limits about what we might mean by good rehab and recovery in relation to some kinds of serious illness, such as mine.

How to operationalise these thoughts?  Well, unavoidably, some broad and open-minded approaches are needed among medics about finding out and appreciating individual patients’ world view of themselves and their situation(s). Too much to ask? Why so?  Secondly there’s a profoundly important need for some common forms of language and communication to help enable patients and their medics to jointly express what needs to happen to help recovery along.

I’ll be returning to rehab and recovery matters in a future blog posting.

My thanks – go to darling Linda, my wife and partner; the infectious disease and respiratory teams, the Grove Clinic and everyone who has been so expert and supportive at the Royal Free Hospital in London; Josephine and Lynne for their valued care and support; our dear friends for their valued support and affection throughout – two of whom were instrumental in highlighting the need to look at the immunotherapy, for that, much thanks!  And last but not least the Buongiorno Italia deli in St Albans.

In conclusion

I’m not there yet.

“Things will get better if you just hold out long enough” – Desmond Dekker