As I lie here unable to sleep, on a day which has much expectancy in it, the past few months and days roll around in my head. With the thought of ‘how long will it take to move forward, and will I’?
It’s been a long and grueling six months. With confirmation last week that an antibiotic, just two doses, has been the catalyst and cause of the worst relapse I have experienced since the onset of severe *ME in 2004. Not that I needed that confirmation. I already knew. It was following two courses of antibiotics that my health initialy completely collapsed. This time it took took capsules!
So I guess you could say, that on a day where I should be feeling elated. I will go into that in a moment. At the moment, I don’t. I am so weary of fighting my corner. Trying to convey to hospital consultants (I have waited six months) and doctors how utterly awful it is. And do you think I would call paramedics on a whim! No I wouldn’t.
Six months of the few treatments that were helping having been withdrawn. Now, agreement that some can gradually be reintroduced. But a discussion with my GP is required. And further negotiation of how are they going to help my throat and ability to eat consistently normally. Because apparently there is nothing really that can help that I’m not doing already. Not really. Have they even heard of severe ME. Obviously not!
So on I go with yet more strategies to help my creaking, tired body recover. And start rebuilding the rice paper layers all over again. To what point it will take me, is unknown. The body I nurse along with the help of my husband. Whilst I live in one room of our home. Now thankfully able to briefly make it down the stairs since a stairlift has been fitted. Which, following an approach to Adult Social Care took six months! I am so glad I fought for that. And yet more questions due this week as to why I am not a fully functioning member of society. Thanks for that not.gov!
There Is Joy
But I just can’t let today be overshadowed by all of this. Even though it does its very best to try and eclipse any joy I can muster. And at times, it’s been hard to muster even a grain. But that grain I have mustered. I am a joy seeker. To the point of discussing books on the landing, barely able to stand, with a Paramedic before being taken to A&E by ambulance! And thinking of just offering them one or two them.
So, apart from my husband, little family and stalwart friends. What keeps me going. What keeps me sane. Hopeful. Grateful. Glad. Expectant. Calm. Smiling. At Peace. What helps me muster that mustard seed of joy. I will tell you.
Because feeling so ill one morning, through the grace of God I stumbled across Morning Prayer being live streamed every morning by a church I happen to follow in London. A church which realises and acknowledges there are people like me. Who live in the shadows of everyday society. Who lack the capacity to connect in person. Who live a life tucked away. Through necessity not through choice.
And through that church. St Martin’s-in-the-fields, Trafalgar Square, London. I am humbly to be admitted as a Nazareth Companion this evening via a zoom church service. Joined by the Nazareth online community. SMITF specialise in people on the fringes. And it makes me want to sob with gratitude that they care that much. It’s life transforming.
Here is the link to the beautiful book by the Reverend Richard Carter, and explains more about Nazareth Companions and the discipline of being with God in quiet Contemplative Prayer. It is unexpected, restful, thoughtful and rejuvenating.
Tonight, God helps my faith journey grow a little more. And I am beyond grateful. Throughout the past 18 years of Chronic Illness. The one ability I haven’t lost, is to pray. When I couldn’t speak, I could pray. When I couldn’t think. I could pray names. And God yet again confirms how important that is and He will continue to help me along the way, even though my path is at a snails pace.
So today, although I lie awake, troubled and feeling upset. Tears of frustration and sheer joy mixed together like grains of sand, rolling down my cheeks. I am grateful. And today will be life changing. Because that’s what God does. He reaches down to the very depths, his hand outstretched, inviting you…
…and changes lives.
Have a blessed day⚘
**And never forgetting the encouragement and teaching from Answers with Bayless Conley, broadcast from California, USA. Which has been a lifeline for years and continues to be.
*MEcfs – Myalgic Encephalomyelitis