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.
I have had to make some adjustments. One of the most expensive was to change from my little car which I loved, but which was manual and didn't have power steering, to one that is automatic, has power steering and has a seat and steering wheel that are more adjustable. This cost more to buy, and more to run, but it was becoming increasingly difficult to drive my old car.
Another adjustment is to do most of my shopping, particularly groceries on-line. Sometimes I'll go to a supermarket, if I have a teenager available to push my trolley, but mostly I go to the online supermarket.
I also find I need to hire a cleaner for the heavy work around the house – vacuuming, cleaning the bathroom, etc. All of these adjustments to normal life can make life far more expensive – when the condition causing the pain also limits my ability to work and earn an income.
I need to exercise to keep joints moving and to help control my weight – but on “bad days” joints hurt too much to move.
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 lupus. 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 (panadol osteo, meloxicam); anti-inflammatory gel (voltaren); 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. If I can't handle the grow-up rides at the theme park, I can go on the carousel, then sit in the shade watching the rest of the family. 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.