Nanu Nanu M.E community

  • Hey kittens!
    I'm a 35y/o cuddly, geeky, artistic, animal and nature loving metal head... I don't usually like labels but I wear those ones with pride.

    I have an energetic soul and a spontaneous adventurous mind but unfortunately M.E (at least we think that's probably what's going on, I don't really have an official dx just a bunch of "normal" test results) has meant I'm often unable to do what I would in a fully functional body. My troubles all started when I commenced oral contraceptives and got glandular fever when I was 20. It has been up and down since then but things took a very dramatic down turn last July resulting in problems with cognitive function and a sever increase in pain and fatigue. I barely leave the house and spend most days in bed or on the couch. I have a wonderful support group around me but it's been hard.

    I feel like I'm still very much grieving for a life I could be living and trying to be realistic while at the same time holding on to threads of hope that I will regain some quality of life.

    I want to thank everyone on here for connecting and will leave this lovely Firefly quote (inspired, I believe, by M.L.King) here...
    "When you can't run, you walk.
    When you can't walk, you crawl.
    When you can't crawl...find someone to carry you."

  • Hi, there, Please to meet you!

  • @Dio_Raven welcome! I'm a metalhead too. Prog metal is my favorite genre. Unfortunately sound sensitivity is one of my symptoms and not compatible with loud music 😞

  • @river Yeah, It has been very difficult, I relish in the moments I am well enough to listen, I dont need it loud but sometimes even the intricacy of Metal is too much. That and well, listening to Metal without feeling the urge to headbang... Also one of my very favourite things in the whole world is being part of a pit. Unless I improve that's never going to happen.

  • @Dio_Raven one of the highlights of my life was seeing Opeth back in 2019. The stars aligned and I was well enough to go, it was even a seated event and I managed to stand for the final song when the crowd got over enthusiastic.

  • @river That's awesome!

  • Hi Dio-Raven, it's really hard grieving for the life you could have had/could be having. I think that's something most people with me/cfs can relate to. Holding onto some threads of hope is really important too as you say. I read somewhere recently that acceptance is both accepting what is while at the same time as holding on to hope. Hard to do in practice sometimes but a work in progress I think. Thanks for the beautiful M.L.King quote

  • @Tina It is a fine line, hope alone can be a dangerous time bomb.

  • Shoreshank Redemption - a film I really enjoyed - explores the idea of hope, yeah.

  • Is Nanu Nanu a Mork and Mindy reference - or is it something else and I'm showing my age there? 😊

  • @PaulB Don't worry, you nailed it!

  • @Dio_Raven love it

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