Have you ever had a toothache, and not been
able to get to the dentist for a couple of days? In that situation, you are
always distracted, whatever else you do, you are aware of your tooth. Something
as small as a single tooth can affect every part of your life until it is
fixed. Now imagine what it is to have that pain, not just for a few days, but
permanently. This is what it's like to live with pain as a symptom of a chronic
condition.
For me, pain tends to be in the joints on my
left side – especially my shoulder, wrist, thumb, hip, knee and ankle. Doctors
can't explain to my why it's these particular joints. I do have some relief
from pain – drugs can control it some of the time. When it's not under control,
like the toothache, the pain is impossible to ignore.
We're always told that pain is a sign of
something wrong. For some people, pain is just the way things are. We have to
make the most of life, no matter how bad the pain is at the time.
My first task in the morning, before I get
out of bed, is to work out which parts of my body are hurting and how much, so
I can plan how I will handle my day, taking into account the limitations of
pain. For me, pain increases with fatigue, and fatigue is just a normal part of
autoimmune. So if I am tired at the start of the day, I know my pain levels
will be worse along with my fatigue levels.
For many people, a week of pain is something
horrible. For me, a week of pain is “normal”, and a week without pain is
something to celebrate.
I always carry my day's pills with me. If I
am away from home longer than expected, and can't access pain control I could
be in serious trouble.
The things that help control pain for me are:
medication; anti-inflammatory; rest, especially making sure I have my afternoon
nap; gentle stretching exercises, as long as I'm not in severe pain; long soaks
in a warm bath. Massage is sometimes helpful, sometimes makes things worse.
Attempting to control my weight should take stress off my joints and help with
pain control, but this is complicated by pain making exercise difficult.
Is there an upside to this? I have learned to
treat little things as precious. If I can't manage a garden, I can put some
herbs in pots and enjoy them. Going out for a coffee with friends is a major
effort – but having made the effort has makes it all the more precious to be
able to do it.
