The lived experience of Severe ME
I do understand that feeling of being stuck on Good Friday, when everyone else is engaged in a 'giant hallelujah'.Really sorry you are so unwell Linda and that Greg is feeling low too with a virus.Generally speaking, people ( and that includes the Church) living in the main stream, don't know how to engage with those who are trapped up an obscure and God forsaken tributary, stranded for the duration.Severe ME is such a lonely and isolating business for sufferers and carers alike.Except that we aren't God forsaken; look at all you have achieved. I find it awe inspiring. Hallelujah for you!xx
I feel I need to reply. I too was dropped like a hot potato from churches etc. I'm bed ridden, an immigrant in the big USA , no opportunities to make new friends., so yes also in total isolation. My husband is my caretaker, a scary situation because what will happen to me in this foreign country if something would happen to my husband? Reason I am upset is that like you write Theresa people and the church do not know how to engage with us. Well isn't it time they learned? Isn't tht wht their profession is all about? The way I see it is that priest, nuns, religious workers do not cumminicate or care any longer because NO-ONE holds them responsible from their non-actions. I see it all in society. People are not hold responsible for what they do or don't do.Too late for an appointment? It's okay, doesn't matter, ignore the sick and disabled in your church, it's fine because you have the excuse that it's do hard to engage this people. Pariahs, that's wht we are. I often think that God if he insisted has send his newest p,ague to earth to test his people. The plague is called ME and while busy creating He threw in a handful of disbelievers, the Wessely's. Than he sat back and watched it all unfolded. And than forgot about us.No I'm not a Christian and never will be. The thought of a revengeful and at the same time an all forgiving God is more than I can baer . Who wants to spend as a dead ME patient in eternity with Wessely sitting next to you? I was raised and schooled by nuns, do I need to say more?
I'm sorry it will not let me post with my google account . It behaves strangely on my iPad. I'm sorry. My name or nick name is Tink and I live in the US after moving there from Europe in the hope on better treatment options. Well that didn't happen. :-) I'm here to cope your links for Karina and to buy your book. Which is I think a very important one. I hope it will let me post now. If not I did at least introduced myself!
I am sorry you had such a struggle Tink; you are right this blog is very hard to post on using the iPad ! Thanks for persevering. I feel that what is happening around Karina gives us all hope, in terms of us, as people with ME and Carers, taking our power back. Collectively we are taking a stand for truth and it is a very powerful one. At last ! I really hope you find the book useful.Greg