Rising (I will go on)

‘I can only ever be resilient if I’m allowed to fall apart and not cope in the times when I can’t cope…most of the time I reckon we just need lots of hugs.’

Words of wisdom from my friend Tanya Marlow, a writer and fellow ME sufferer, in a Facebook comment, June 2019. You can find her excellent blog here.

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There is a steely core deep inside of me made up of a rock-solid faith, a love of life, and sheer bloody-mindedness that refuses to give up. Most of the time. When I am in the state described in my previous post I have temporarily lost touch with it. I need others to help me find it again.

I need other people to be the hands, arms, and voice of God when I cannot hear or feel him for myself. To show me his light and love in the darkness that has overwhelmed me.

Usually I have sunk so low so quickly because, at that time, I am just too physically unwell to look after myself and manage alone in my flat with my normal levels of support, and the effort of trying to do so has become too much and is rapidly making me iller. The fear of how I am even going to feed myself when I am this ill and the fact that the sheer physical effort involved in the basic practical tasks necessary for survival is making me more exhausted and more unwell mean I am now totally overwhelmed mentally as well as physically. The mental distress is even more scary than the physical weakness and pain. I am panicked by my thoughts of wanting to give up and end it all, but too ill to fight them. And I can’t get the rest I desperately need because when I am alone with no distractions I am so completely physically spent that I just cry, which exhausts me further, and the downward spiral continues.

I know what will stop my fall and help me to start to come up again, but it takes some organising and a whole load of help from other people and I am in no state to organise anything, make decisions, think rationally, or even dare to ask for the help I know I need. Addressing my physical state will rapidly improve my mental state and restore my ability to keep going and cope again. Somehow I eventually manage to tell at least one person that I need help. As soon as a few people, including clergy and my GP, know what is happening I begin to believe I can get through this.

I don’t need counselling, mental health interventions, ambulances, hospitals (heaven forbid, they can offer no helpful medical care and are full of lights, noise, busyness and medical staff ignorant of the latest medical research into ME and likely to dismiss it as a psychological issue and push me to do more, all of which would make me worse not better).

I need:

1) Someone to hold me. When I am this unwell it feels as if I am being physically pulled into a world of darkness and pain, away from all connection with God, people, and life, by a force I am too weak to withstand. The mere act of someone sitting and giving me a hug and allowing me to sob if I need to feels like someone reaching down into the pit, grabbing my hand, and stopping my fall. That alone starts to pull me back up. At this point I am usually beyond rational conversation, taking in anything anyone says, reading anything, even listening to things (it is a feature of severe ME that noise can make it worse, and, at my worst, that includes music and the spoken word).

A physical connection with someone feels like a literal lifesaver, reconnecting me with God, with people, and with life. (It doesn’t even much matter who it is as long as they are happy just to sit there and say nothing much – though clearly one needs to be somewhat discerning!) The physical arms of an actual human represent the ‘everlasting arms’ of God, who I have also temporarily lost touch with, and serve to remind me of his presence and love as well as that of the friends and family in my life. No amount of talking, praying or preaching is going to help at my lowest. I need a long hug. If it is someone who can also somehow sort out my second need then I won’t start plummeting again the minute they leave.

2) A load of extra practical help for the next week or two. Ideally somewhere to stay for a few days where there is somebody in the house at least on and off, another human who cares about me sleeping in the same house at night – though I wouldn’t ever need to disturb them, it’s the mere fact of their presence that helps – and where I don’t have to do anything, so that I can start to recover my physical strength. A few days of breakfast, lunch and dinner being provided, hot water bottles occasionally filled, and ice packs swapped over, and not having to organise anything for myself and I am likely to be up to managing again. I don’t need medical care. I just need somewhere I can rest properly and feel safe. Meals and occasional human interaction that does not demand anything of me. And a hug if I cry. Though the crying will stop pretty quickly once I’m somewhere else, with people around some of the time and checking up on me occasionally.

Indeed just being in a different place where I know someone is going to provide food at appropriate times and occasionally make sure I’m ok, immediately makes me feel safe and stops the suicidal thoughts and feelings. Which enables me to rest without constantly crying. I don’t need weeks of counselling (though, as an erstwhile therapist who has definitely benefited from counselling at times I’m not knocking counselling). I just need to know that I have the extra physical and emotional support I temporarily need to survive.

In the Old Testament story of Elijah the prophet reaches rock bottom, collapses under a tree and expresses a desire to die:

He came to a broom bush, sat down under it and prayed that he might die. “I have had enough, Lord,” he said. “Take my life…”  1 Kings 19:4

God doesn’t preach at him or judge him or suggest he do x,y or z to get himself better. God provides him with food and lets him sleep and have a good rest. After which Elijah feels able to keep going and cope with life again. (1 Kings 19)

Even most healthy people know what it is like to feel so exhausted that they just cannot deal with anything else at that moment. Or to cry out of pure exhaustion. Or that problems which in the broad light of day seem manageable can seem insurmountable at 3am when they have limited physical and mental resources. Or that physical pain, even temporary, can be all-consuming. Children regularly cry with exhaustion when they need food or sleep. It’s as much a physiological as a psychological response. With the overwhelming exhaustion that comes with ME I am constantly on the edge of that and it takes very little to push me over. Mostly I can manage it: making sure I eat regularly, and rest enough; pacing my activities, and resting more when I have overdone it. Just occasionally I slip too far down for some reason and suddenly it is all beyond me. It takes the physical and practical help of friends to get me back up.

Last winter our curate asked why I hadn’t been offered the suicide prevention programme run by my GP surgery. ‘You are too physically unwell to get to the appointments.’ said my GP, ‘And anyway, you don’t need that programme. You just need somewhere to stay where you will be looked after for a few days so that you can recover some physical strength and you will then feel much better mentally and be able to cope again.’

He was right. And there is a biblical precedent for it.