Community member @littlemissinnocent talks to us on World Lupus day about recently being diagnosed
with Lupus and living with Cerebral Palsy
My name is Paula, I
was born with cerebral palsy. Over the years I have managed this quite well
(even if I do say so myself). As the years have gone by, I have started to find
things harder so after many appointments and further investigations I finally received
a diagnosis of arthritis. I feel that I took this news in my stride as I am
aware that arthritis is considered common in adults with CP.
Just as I thought I
had adjusted to my additional impairment I started to get more pain, which I
obviously put down to my cerebral palsy and arthritis. Initially, doctors
agreed with me that the pain was something I would need to manage, and simply
live with. Sadly, for me the pain seemed to get worse, eventually after a long
period of time, and several hospital admissions, I was diagnosed with Lupus. To
be honest I did not take this news well at all, I felt like it was my own fault
because I had pushed myself too hard. I don’t usually like to admit this, but
it is the Lupus diagnosis that I found the hardest, and the one that has
floored me the most. I have less energy than I had before and at times I feel
as though am struggling quite a bit.
Currently, my pain is
not very controlled, and I experience tiredness pretty much all of the time,
but I am being monitored closely by my G.P. and the hospital. The Lupus
diagnosis has made me think a lot about the future and the possible effects on
my mobility and independence. I have found that using my wheelchair a little
bit more has helped me to maintain that independence and preserve what energy I
do have, so I am able to continue with my job and do all of the other things
that I want to do.
Being diagnosed with
Lupus and living with cerebral palsy is definitely a challenge and of course I
am very uncertain about what the future may hold. There is one thing I do know, though, I have
no intention of giving into any part of my disability or additional conditions.
I want to enjoy life as much as I can.
Are you living with
Lupus and another disability or impairment? We would like to hear about your
story and experiences
