Radical rest: evidence and anecdotes

Antibiotics and developments of physical therapy following the two world wars put paid to the formalised notion of 'convalescence' in the UK, the elimination of TB as an endemic disease was the effective end of the convalescent sanatorium: Sanatorium - from the first to the last .

Social change has also played a role, a wealthier society has meant that home for most people is a far more comfortable place that any institution and there's the additional influence of the failure of the 'mental health sanatoria' in the 1950s and 60s which led to the default position of 'care in the community'.

The one area that does still have some convalescent provision in the NHS is post cancer surgery, mostly for frail older patients.

Institutional change should not of course have necessarily led to the the abandonment of the notion of 'convalescence' but connotations of passivity and entitlement have probably led to it becoming a less acceptable term.

 

In addition to fresh air he allowed his patients 'a nutritious diet of mild, fresh animal and farinaceous food, aided by the stimulus of a proper quantity of wine, having regard to the general state and condition of the patient'

Ah, that’s where as a teetotaller I must be going wrong: it’s the “empty cellar syndrome” discussed elsewhere.

 

I have a vague memory of my mother telling me that convalescent hospitals were used for people who caught scarlet fever in the 1930s. Since I am not familiar with the disease I don't know why this was considered necessary. I only know one person who has had scarlet fever and that was before I was born - and that person never went to hospital for it.

 

Amen brother but I believe those of us who experience harm from exercise should get a new diagnosis like SEID because of what happened to the term ME, it's been hijacked lets face it.

 

When I was 6 months into mild ME, I had to decide between starting a PhD or staying at home with my parents to rest. I chose the former, but I wish I had chosen the latter — it made me fully housebound and I had to stop working a year into my PhD.

It is a tough decision due to the serious implications on your career, but it can always be resumed to some extent if your health improves. What is clear is that it will not be possible if it deteriorates.

 

The notion of radical rest I have read on social media is mostly for people who can afford it, have a reasonable support network or support services and is the privilege of a few.

I fought not to be medically retired but to be given a position elsewhere in my clinical service. Never worked again, as then picked up my next shared responsibility - being a parent to young children and supporting vulnerable family members, managing budget and finances to keep a roof over my head and usual essentials. Radical rest was not an option.

 

A friend many years ago had a holiday on a Greek island fairly early on in her ME and felt very much improved. So she gave up her job and sold everything she possessed, so that she could afford to return to the island for some eight (?) months. It seemed to work really well and once her money ran out she felt happy returning to the UK to resume her career. She got a locum post straight away, but within a couple weeks experienced a major relapse from which she never recovered. Having previously given up her permanent post she was not eligible for ill health retirement, she had no permanent home and only a suitcase of possessions left. It meant she struggled financially for decades until reaching pensionable age.

I went part time at work some years into my ME as a way of keeping working, and did improve dramatically, I then had several years of feeling I had recovered and started building up my activity levels again, until I got a bad dose of flue that triggered a major relapse and this led to me having to take ill health retirement. Retiring from part time work meant I ended up with a lower pension than I would have had had I retired instead of going part time some years earlier.

 

I wonder if another element in the disappearance of the broadly accepted concept of convalescence was the change of culture in hospitals, when it was realised that keeping post-infectious and post-operative people on strict bed rest (as nurses had been trained to do for decades) often wasn't necessary and could be counterproductive?

If you couple that with increasing living standards post-war, changing doctor/patient relationships, and almost universal immunisation against more and more infectious diseases (my mother's generation was probably about the last where nearly every child in the class got diphtheria and mine was about the last where they all got measles), it's not surprising there were cultural changes.

I think employers introduced another influence into attitudes at some point in the 80s. When I first started work in an office, people with a streaming cold or hacking cough would stay at home for a couple of days as a courtesy so as not to give it to everyone else. The employers I worked for didn't discourage this, it just seemed a common sense approach. Somewhere between the mid-80s and the mid-90s, it changed so much that some employers practically demanded a death certificate before people could take sick leave. Then even sick pay started to vanish for many, and now it can be disciplinary procedures or dismissal if they call in sick for more than a handful of days in a year, even with a doctor's certificate.

Infection control, probably. I remember it going through our class at infant school, though I escaped it myself. But in small, closely packed prewar housing, with siblings sharing rooms and even beds, it'd spread like wildfire. It could kill or permanently disable, specially pre-penicillin.

 

I just had a nice phone conversation with a woman who contracted ME at 57, was severe end of moderate for three years and then gradually, very slowly, got better in her early 60s. Ten years later, she is still working, and hasn’t relapsed.

She says that she spent most of the three years napping. N=1, but I wonder whether sleep is key to doing radical rest properly. Maybe I am wasting this sabbatical by spending it consuming digital content, albeit from bed.

 

Yes, you are. This was my main mistake when I took time off of work, before I became severe. Screen time (whether on a smartphone, computer or TV) is cognitive exertion, not rest, and unfortunately radical rest requires strict discipline that is terribly hard to stick to.

 

There is indeed the rub.