• Good morning everyone🙂

    Being new here I have been slowly reading through past conversations and I wanted to say how impressed I am with everyone's positivity. Your ability, even during really tough times, to try to see a positive or some little silver lining is inspiring to me. I have been trying to remain hopeful for my life to resume as it was and can often feel quite down or start to worry and I have only been unwell for 3 months and don't have the pain that I know many of you suffer.

    Your support of each other is fantastic and, I imagine, invaluable for your sanity and well being. I have started to think about ways to try to remain a bit more positive and would really appreciate it if others could share ways that help them to feel calm and, perhaps, have more acceptance of their current limitations and symptoms.

    I hope you all have a happy day today🤗.

  • That is lovely of you @Maryanne
    There is plenty of anger and frustration and bitterness and grief as well ofcourse, and it is healthy to feel whatever emotion we have.
    I am not sure if you can hurry acceptance, or peace, or small moments of joy and loveliness, but they are there, in the road ahead so grab then when you can.

    The two main things I do are SO irritating to anyone who is not in the space to do them. They are

    One is to really look and see what other people's lives are like. The real people, not the ones winning Olympic medals are making the magazines. The people in refugee camps and war zones, in hospital battling awful injury and illness, in suburban homes battling mental illness, on the streets. I try to consider my life in relation to that humanity and mostly I find things to be grateful for.

    The other one is mindfulness: to be in this moment, at this point of health/bad health, with these thoughts, feelings, sounds, longings and then move from this lived moment to the next one, with whatever choice I do have.

    I've even irritated myself writing those 😄 😄 but luckily I have remembered that there is a third thing which is a sense of humour. A black, warped one is best 😉

  • @Maryanne Hello! I always tell myself that there’s always someone worse off than me. I’m thankful I live in a lovely small community and I have a very nice view out of my window. And as @Dot said, humour is worthwhile (although it’s hard to find at times). And since joining this forum, it’s made such a difference to be connected to people who understand. And of course to stay positive and hope for researchers to find the answer.

  • Hi @Maryanne .... My experience with trying to remain positive is a never ending story. I have learnt to accept the challenges and allow myself to freely express whatever emotion I need to whilst living with the illness. Of course I strive to be positive but I don't beat myself up too much if I fall into negative waters... If I feel too down, I confess to using the forum as an outlet to reach out to others to get sane again... Overall though I am usually upbeat and I love a good laugh ... sending you a chocolate doughnut : they always cheer me up 🍩 🤓

  • Thank you so much for your honest thoughts and ideas – they are not irritating at all Dot! I totally identify that some days are better than others and it is important to try to go with the flow and allow yourself to just be with however you feel that day or moment. I try to be in the here and now but find my mind racing, thinking and worrying about the future. I do meditate and practise restorative yoga to help me to give my racing mind a break. Sometimes this works, often it doesn’t!
    I agree that it important to remind yourself of what you have got and enjoy the small things that make you happy (I look forward to my chai latte each morning now that I can no longer drink coffee! That sounds very silly now that I have written it down!). The other day I started to watch a documentary on CFS on Netflix called Unrest. I had to stop watching it as I wasn’t in the right frame of mind. It is quite harrowing and I felt very sad watching it but it was a reminder that my illness could be so much worse.
    Thank you again for your kindness and welcome. I can see how connecting with others who are dealing with similar symptoms is really helpful, particularly when you feel you have to justify your illness to others and explain that the symptoms are not caused by depression or psychosomatic. Your empathy is a definite postive for me.

  • @Maryanne Good to hear from you. 💐

  • @Maryanne
    Hello today. You sum up so well how precious a forum like this is where we get a window into the lives of our fellow ME/CFSers, and it helps put our own lives in context.
    And also how hard it is to just be mindful when we have uncertainty in the future that needs huge, important decisions made right at the time when we really aren't well enough to make big important decisions.
    Hooray for that chai latte. A little bit of regular pleasure at the start of the day.

  • Hi @Maryanne I know how overwhelming it can be at times!

    I feel hopeful when I remind myself that I’m not alone. Other people understand what it’s like and they are only a click away 😊

    Small achievements lead to a feeling of positivity and remind me of what I Can Do. I like to look at nature (and paint it if I have enough ‘battery life’ )😊

    The childhood rhyme: “inch by inch - life’s a cinch; yard by yard - life is hard” also helps me to deal with things as they come and reminds me not to speculate on things too far ahead.

    I hope these strategies will be helpful to you too! Wishing you all the best x

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