World Lupus Day - Living with Lupus and CP — Scope | Disability forum
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World Lupus Day - Living with Lupus and CP

littlemissinnocent
littlemissinnocent Member Posts: 13 Connected

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


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