I had to put myself through a grieving process for the life I'd lost. Learning to accept is a massive battle but getting to a point of acceptance makes a big difference rather than fighting everything which makes life so much harder.

Hi just a quick one ,if you are struggling with some of your goals (applys only if you set yourself daily goals )then try and make them smaller and realistic ,aiming to high if your pain is high or your energy levels are low ,can lead to more disappointments ,keep it real .

I have had it for two years and am finally understanding most of my pains and how to minimize them. It is all in your attitude and how you treat yourself. Learned to take it slower and take time to rest...

I'm 3 years in and I still can't accept it. I really think there has to be a way to reverse it, just haven't found out how. I will keep searching for an answer.

As my symptoms vary
From day to day, then, that is how I tend to deal with it - day to day. I must admit that I do fight the pain, and will not give in to it - hope that helps a little xxx