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No one wants to be labelled or have others look at us as weak, but when you are living with a decease it is what it is and we have to find a way to live as productively as possible.
I DON’T have Joint Hypermobility (EDS), but I do have Fibromyalgia + Myofascial pain. I have had it for over 27 years now, and as I get older, it gets a bit harder as one does not recover as fast as I used to each day.
Being productive in something you love feeds the mind, soul, spirit, and heart, which eases pain. I can not work a conventional job, as sleep is my nemesis, and one never knows if one will get any sleep from day to day.
I admit at times, it sucks; it can get really hard, especially if you’re on your own, and because it does not show on your face and everyone thinks your ok.
I have traveled many roads trying to balance work, life, and body in harmony, and I have found a calling that serves humanity and serves me in my heart and soul. I work on the computer all day, which is not good for the body, but I get to interview people making a difference in the world who have had it much harder than me and who are now living examples of how to find meaningful purpose and joy despite what you have gone through or are going through.
Pacing oneself is a must. Honouring the mind-heart-soul and body connection is essential in finding that partnership in respect within, for only in balance can we live in peace with ourselves.
I know it can be hard at times; the pain, depression, lack of sleep, immobility, and not being able to do the things you want to do can be hard in finding that joy of living, but we can if we listen in, find that balance and honour ourselves in the nurturing we can to live a happy proactive life.
So I take each day as it comes, sometimes a desperate struggle, most days a plodding through, and sometimes a leap and a jump, we just have to go with the flow.
I will have to work forever, as if I still wish to live on earth, I need to, but if I continue to find joy in it and meaningfulness, then that feeds my soul as well as my body and gives me a reason to be. For I believe we all need that reason to be here, and we are SO MUCH MORE THAN OUR DISABILITY. WE ARE WONDERFUL SOULS SERVING HUMANITY in any way we CAN.
Here is an article and shows I have done on the subject that may help you on your fibro journey, I wish you all strength and joy in your lives.

https://selfdiscoverywisdom.com/2019/07/29/joint-hypermobility-eds-and-fibromyalgia-myofascial

Regards

Sara Troy

Self Discovery Wisdom

KINDNESS AND SOFTNESS IS WHAT HEALS US THE MOST