If this is your first visit, check out the community guide. You will have to Join us or Sign in before you can post.

Having difficulties logging in or resetting your password?


Please email [email protected]

World Lupus Day - Living with Lupus and CP

littlemissinnocentlittlemissinnocent Posts: 13Member Connected
edited May 13 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


Replies

  • Nic123Nic123 Posts: 8Member Listener
    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 Posts: 1,783Member 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 Posts: 1,783Member 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 Posts: 4,391Administrator Scope community team
    Very positive message at the end of this @littlemissinnocent, thank you!
    And thank you for sharing as well @Nic123. :smile:
    Senior Online Community Officer
    Scope
Sign in or join us to comment.