Almost diagnosed!

  • Re: What do you wish someone had told you when you were newly diagnosed?

    These responses are so valuable and much appreciated. I am on the cusp of diagnosis (I hope) many years after first looking for answers and going through so many tests and investigations. Mental health has been a huge confounder also. My trickiest issue I think will be trying to help my family to lower their expectations of my capacity in our future plans, accepting that rest is the way to go and exercise is not the answer. (Edited to remove some potentially identifying info). Thank you all for sharing your experiences.

  • That is such a tricky issue @Bee. It is such a hard concept to understand. We are all driven to 'soldier on' and push ourselves and use will power etc.

    Have you read 'spoon theory'? It is a short piece written by Christine Miserandino about living with Lupus and it can be very useful for family and friends to understand our limits.

  • PS Just reread it, not quite as short as I remembered it!

  • @Dot Thank you for that - yes I had that recommended to me a couple of months ago and I found it very validating for myself anyway! I had tried explaining in the past that I have only so many "energy tokens" each day, and it was great to hear of somebody using a similar sort of analogy. I think when somebody is used to being able to replenish energy almost just with the passing of time, it is very difficult to understand the concept of it being finite. I will read it again though, as I found it very reassuring!

  • @Bee Sounds like you’ve been on a very long journey to get to this point!

    Communicating energy limits to others can be tricky…it’s tough for us to wrap our heads at times around let alone someone who hadn’t had to live with the significant energy limits we do.

    I don’t know if this will be helpful, but the videos by Workwell can be good to get across the negative consequences of going beyond our energy limits.

    There was also a short animated video a fellow ME/CFS patient made which explains ME/CFS simply.

    I also showed one family member the Emerge resource for health professionals on avoiding GET.

    I guess it comes down to whether they have the interest to consider any of these.

    Sending best wishes to you in navigating this.

  • @Bee Thanks for sharing @Bee . I wish you well, throughout this process, as it is a very stressful and arduous. The diagnosis or official validation of having ME, can become a positive step towards getting the help and support on all levels, from all people; It's ironic that we hope for the relief of a diagnosis, of such a chronic debilitating disease/illness, just to get to a point, where we can move forward. I remember being glad I finally had a diagnosis. It meant, my search for answers or reasons as to why I am so ill, was finally over. It gave me relief and the mind-set to get on with learning to live with it and understand it. I'm still learning; I feel for all going through this process, that usually takes years, whilst their untreated, unmanaged chronic illness slowly wears them down on all levels. So sad ... that we have to go through this😢

  • @Bluebellblossom said in Almost diagnosed!:

    This is one of the prettiest videos I've ever watched. Like you say, it is simple, yet poignant. In time I'm sure I will share this one.

  • @Bee said in Almost diagnosed!:

    This is one of the prettiest videos I've ever watched

    It’s so beautifully done and I think the presentation softens what can be a difficult topic for some people to think about. 😊

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