Wear
purple for International Lupus Awareness Day
I had many of the Lupus symptoms,
but I took it that exhaustion, headaches, and body aches were all part and
parcel of being a busy mom, running a small practice and the responsibilities
of parenthood. I also never found the time to get these checked. This was
mostly because Lupus comes in flares – you’re feeling absolutely fine one day,
awful the next. Recovery takes from a few days to about a week, and when you’re
feeling better, what’s the point of going to the doctor?
10th May is
International Lupus Awareness Day. Although Lupus seems to be on the increase,
this may be because it’s recognised and diagnosed earlier today with antibody
blood tests. Lupus also mimics the symptoms of many other chronic conditions,
mostly HIV. The difference is that HIV is a virus that damages the immune
system, whereas Lupus, an auto-immune disease, damages its own immune system.
This affects connective tissue and because the whole body is made up of
connective tissue – even blood is connective tissue – any system in the body
can be attacked. The most severe being a direct hit to the heart (when this happens, Lupus is often only diagnosed at a post-mortem), kidneys, liver, lungs, and
brain. It’s for this reason that people with Lupus (usually women) need to go
for regular blood tests and check-ups.
They also need to:
- Avoid infections, or get these treated ASAP
- Avoid direct sunshine – this can initiate ‘discoid’ Lupus
- Avoid stress
- Eat healthily
- Exercise
- Take up a hobby
- Don’t google – ask your doctor because every case is different.
The doctor who gave me the best
advice told me not to focus on my Lupus, but to focus on my passion. When he
asked me what my passion was, I told him it was music.
“Focus on your music then,” he told
me. “When I see you again, I want to know what you have done with your music.”
And so, I did. I joined the church
choir, volunteered to be the organist, and now I play the piano just about
every day, simply for my own enjoyment and love of music. Along with regular
check-ups, avoiding junk food, fats, and sugar, I enjoy hobbies like knitting
and card-making, writing, cooking, and baking – all of which not only keep me
busy and motivated, they also help to bring in a bit of extra cash.
If someone you know has Lupus you
can:
- Keep them company when they go to the doctor/hospital for check-ups
- Help them out when they have flare-ups (these can keep us bed-bound for at least a day – sometimes longer)
- Keep them motivated (depression and sleeplessness are real): take them to the movies or out for breakfast. Encourage them to take up a hobby, exercise or yoga
- Send SMS messages just to ask how they’re doing.
If you think about it, everybody
needs this kind of support. We should all help and encourage one another to
live and eat healthy, live each day to its fullest, and to do the best we can
with what we’ve got.
Happy Lupus Day to all my friends
at the hospital.
