Sunday, June 08, 2014

The relentless diary of chronic illness

A point about chronic illness that's hard to grasp from the outside is the relentless sameness of it.

A really good chronic illness is so dominating. It commands the daily routine, and the weekly and monthly and annual diary. It changes everything, from high finance to housekeeping.

A chronic illness imposes its own shape on life. It embosses life with its own imprint, and it leaves precious little space on the paper to write your own story.

Its story – Ms T's illness – goes like this:

0530: Day starts with medications, some of which are soporific. Return to bed.

0630: More medications, more sleep.

0730: Wake properly, have breakfast. Rest of morning medication. Some of these make you feel ill.

0830: Return to bed to cope with nausea.

0900: Wake, shower (if well enough), dress, etc.

0930: Plan the day, starting (probably) with loading the washer.

Things will happen after 0930, but only slowly and carefully. If pain, nausea and diarrhoea are your companions, you don't undertake anything lightly. Trust me.

By 1000, you might feel well enough to plan, say, a shopping trip, and if nothing goes wrong by 1030, you will even commit to getting the 1050 bus. That gets you back home by midday as long as nothing goes wrong, in time to prep others' lunches (I am spoiled: if I'm working from home, Ms T always brings me lunch).

1300: With lunch over, take medications that mean a brief rest.

The afternoon will be occupied with trying to do things that must be done, fighting off the nausea of chemotherapy and the lassitude of so many medications, and trying to form a coherent plan for preparing dinner.

1730: Start preparing dinner, frequently with assistance. “Can you help me with the potatoes?”

1900: Dinner, perhaps with wine, and the TV news.

1930 to 2000 (depending): More drugs, shower or bath (if too unwell to shower in the morning), bed.

A high-quality chronic illness – not cancer, in Ms T's case, an immune system disorder that can only be held in check with heavy chemotherapy – might leave the sufferer with four hours each day that aren't dictated by the illness.

The chemo has its own life. Ms T has been prescribed cyclophosphamide on various frequencies between fortnightly and (thankfully, currently, quarterly).

And that doesn't count the diary items. Once a fortnight, sometimes once a week, there's a GP visit because of all those drugs need prescriptions. At least once a month, averaged over a year, there's a specialist appointment at a hospital. Twice a year, on average, there's a procedure that requires at least a day-surgery visit to hospital.

And there's the pathology, which never ends.

This is the invisible life that the nasty right-wing punishers and straighteners don't understand.

If you're chronically ill:
  1. You have no “normal life” into which might be slotted “employable”.
  1. You can't avoid GP visits. Some medications require a monthly review, even if it's an authority prescription.
  1. You can't avoid pathology, nor specialist or hospital visits.
  2. You will almost certainly be reduced to a single income, at least some of the time.

We're lucky. We have survived so far without needing more of the social “safety net” (a term I despise) than our medical system.

But I'm outraged that the rich are happy to consign others to – in effect – death, because they see chronic illness as some kind of divine punishment, rather than misfortune.

This government is made up of evil men who actively detest the people they govern, and want them to die.

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