Hi, my name is FutterKA!

FutterKA
FutterKA Online Community Member Posts: 1 Listener
in Start here and say hello!
Hi everyone, I've been unwell with an AVM (arterial venous malformation) all my adult life. Mine effects my blood flow through my pelvic area & to close to sciatic nerve to be removed. Last Oct I was also diagnosed with Chronic Fatigue syndrome as well. I've joined to read  others experiences & learn tips on things suitable to do & conserving energy. 

Comments

  • chiarieds
    chiarieds Online Community Member Posts: 16,671 Championing
    edited March 9
    Hi @FutterKA - & welcome to the community. I'm sorry to read you have an arteriovenous malformation & that it seems inoperable, & that on top of that you've also been diagnosed with Chronic Fatigue Syndrome/Myalgic Encephalopathy (CFS/ME).
    As with some other disorders, 'pacing' may be helpful, & learning to do any activities, whether physical, mental or emotional, within your limits (i.e. where you'd start to feel worse, or if you 'overdo' it one day, then you may feel worse the next, so find your baseline).
    If you haven't come across the ME Association's website before, then it's well worth a look: https://meassociation.org.uk/
    They have much informative literature; please see this for example: https://meassociation.org.uk/wp-content/uploads/Ten-Key-Aspects-of-Management-November-2023.pdf   where you'll see 'Pacing' mentioned on pps 6-7 for example.
    I've read quite a bit on this website both previously & recently, as it's looking like my son's wife might have ME. I hope this website may also help you.
  • Adrian_Scope
    Adrian_Scope Posts: 11,669 Online Community Programme Lead
    Hello @FutterKA and a warm welcome to the community. I'm glad you've decided to join us and share your journey, it sounds like you've been through a lot.

    Our coffee lounge is the perfect place to relax and have casual conversations with fellow members. It's a great opportunity to unwind, share stories, and perhaps find some comfort in knowing you're not alone in your experiences.

    We also have a busy games lounge where you can find lots of word-based games to get involved in, which can be a fantastic way to take your mind off things and enjoy some lighthearted entertainment.

    Feel free to jump into any discussions that pique your interest. :) 

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