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World Lupus Day - Living with Lupus and CP

littlemissinnocentlittlemissinnocent Member Posts: 13 Connected
edited May 2019 in Disabled people

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


  • Nic123Nic123 Member Posts: 8 Connected
    That sounds like a good plan! I think maintaining every bit of freedom, fun and connection is key. Recently Ive beed worried about getting older, feeling more pain and being less mobile and isolated. Ive been having a hard time not dwelling, but I think it deff is good to focus on increasing the use of your chair (and the aids I use) to keep feeling positive.
  • Antonia_ScopeAntonia_Scope Member Posts: 1,783 Pioneering
    Thank you for sharing this with us @littlemissinnocent , it can be difficult to get another diagnosis when having other health conditions too. "I want to enjoy life as much as I can." Love this! :)

    All the best.
  • Antonia_ScopeAntonia_Scope Member Posts: 1,783 Pioneering
    Hi @Nic123 how are you doing today? I am sorry to hear you have been worried, I know some of our members will be able to relate to you. So please do not feel alone, in feeling this way. I am glad to hear your aids has been helping you feel positive.

    Please feel free to join our coffee lounge discussions group.
  • Adrian_ScopeAdrian_Scope Administrator Posts: 7,401 Scope community team
    Very positive message at the end of this @littlemissinnocent, thank you!
    And thank you for sharing as well @Nic123. :smile:
    Senior Community Partner
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