GBS Update Wednesday 29th September

The recovery at the moment feels, if I’m honest, like a bit of a slog.  After a big dip followed by spurts of sharp recovery, we have reached a point of very slow progress. It doesn’t even feel like steady progress; it’s happening at various speeds ranging from ‘very slow’ to ‘slow’ to ‘stop’.

When it’s the latter, it’s as though something, somewhere (the drugs, the GBS, whatever) pushes a big red button, and everything comes grinding to a halt. The pain goes up, energy and mood go down. We’ve formulated various theories as to why this happens, and tried to prevent it; the drugs timetable is adhered to to the minute, I have regular healthy snacks and my daily timetable is planned so as not to exhaust energy reserves. Still, usually once or twice a week I have a period of time (afternoon, morning, a day or more…) during which it is impossible to flick back into ‘normal’ mode. I just have to sit and ride it out.

During these times it feels as though I am being held captive by ups and downs I don’t understand and can’t predict – it can be quite demoralising!

The good news is that ‘normal’ is getting more and more normal. I am able to get out with the family on shopping trips, go swimming without it affecting plans for the rest of the day.

A lot of the time I feel mentally ready enough to just get on with life again. That isn’t true, but it’s the way I feel most of the time. Not being able to get back to things can cause frustration.

What I am asking God for is a release. From these dips, and if the drugs are part of their cause (it is likely that they are), from the pain which necessitates them. From the inertia in my legs and ankles, and from the general brain-fog (which is partly drugs, partly not having been in general circulation for half a year). I wonder if you would pray the same prayer with me?

My family are doing so much to accomodate me at home, and make life accessible to me. They are doing such a fantastic job, but it can be hard-going sometimes. Please thank God for them, and pray that they would continue to have grace from God for the road ahead.

Earlier in the week I was listening to this song which I felt reflected the way in which this condition came on in a moment; in the same way, that this period of time, in the context of eternity, even in the context of my whole life, is really only a short moment:

Treasures come and treasures can go in a moment
But Jesus You’re eternally mine

You are all that I need
You are all that satisfies me
What can the world offer now?
This is life, this is hope
I am free

I’m made rich through the gospel
I’m made strong in the Lord
Thank You God of salvation
You’re my life, You’re my hope

Thank you God, that in the tough moments of life, You satisfy me, making me strong, making me rich. 

And thank you to all of you, who have been on this journey with me now for over six months, for your commitment in your praying!


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