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:
- You have no “normal life” into which might be slotted “employable”.
- You can't avoid GP visits. Some medications require a monthly review, even if it's an authority prescription.
- You can't avoid pathology, nor specialist or hospital visits.
- 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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