GBS Update Thursday 16th September

I realise that, through updating you a couple of times a week, it is possible that the big picture as to what I can and can’t do, is lost.  So today, my aim is to highlight the ways in which I’ve been healed to date, and the things I am still trusting God for.  Some seem fairly insignificant, but be assured: praying for the small, but important, is simply an extension of the big prayers my Mum and Dad asked you to pray all those months ago.  We have seen many answers in the past, as you prayed and prayed, and God answered, but we press in for more.

So, working from the head, down:

My hair is growing again! Yes, it seems that my hair (and also my fingernails!) stopped growing during the acute stage of the illness, and then jittered back into action again.  I’m pleased to say that my magnificent Hairdresser-Uncle (cue the A-Team music) was able to report normal (yes, normal) hair growth once again.  A small, but real victory! (and yes, my fingernails are now growing again too).

The double-vision reported in the early stages has now long since stopped.  And so have the aches I used to get during that time.  I am now able to use contact lenses as I normally would – my eyes are back to normal!

The trache-scar is healing up well, so well I thought I’d attach a picture of it to show you (only available at the blog).  I’m using an emollient cream regularly to help it continue to shrink and fade.

I remember what a labour it was to get my arms moving again, and how I could only perform certain movements from certain angles.  I can now say that, thanks to the endless stretches I was put through at the hands of ruthless physio-terrorists, and the weeks of self-propelling in the wheelchair, I have over 95% normal range of movement in my arms.  I could do with a bit more strength though.

The same would be true of my hands: the range is there, but the strength isn’t.  Although sensation almost everywhere else is back to normal, a few numb patches on certain fingers remain, which means my typing is not always accurate and I have to be careful which fingers I let touch a hot cup of tea.  

You have all heard more than you needed to about my bowels, so from a digestive point of view all I will say is that things are not yet normal, but very well managed!! My core needs further work to strengthen it – this is not just to be able to hold myself upright, but also to aid with balance.

My legs are increasing in range of movement all the time.  I can now use crutches without putting too much weight through the arms, but I do need more strength in the legs to be able to walk more normally.  I noticed last night that I gained a new movement, which suggests that the upper legs are at about 85%.  The lower legs are probably at about 60%, both in terms of strength and sensation.  I’m still wearing the AFO splints for my ankles, which are probably running at about 15% strength and movement, with patchy sensation in the feet.  Toes are still completely motionless!

I’m still on a number of painkillers – the combination made my GP’s computer do lots of beeping with warnings when she put the prescription through today! She has been able to arrange for me to get prescribed access to the local leisure centre, and we are hoping to be able to change the council’s mind over a blue badge for the car, so I can get in and out of the car.  At the moments we are having to drop off, then park in a normal space because Guillain Barre Syndrome is not on their list of eligible conditions!

This is certainly a different season to five months ago.  There has been much to get used to, but through it all, it has felt like I have been carried through it, as though it could be happening to someone else.  I don’t think that[‘s denial, I think it’s the protective hand of God! I was listening to this song earlier today and this verse seemed so apt:

When peace, like a river, attendeth my way,
When sorrows like sea billows roll;
Whatever my lot, Thou has taught me to say,
It is well, it is well, with my soul.

Not that I now, forever and always, have this outlook. But, it is my honest testimony that at every stage of this condition, God has been teaching me to say “it is well with my soul”. I’m pleased to say that, despite everything, my soul is well! Thank you, God.

With my love, and thanks for walking this journey with me. I thank God for you all.



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