I also wake up with a tongue that seems far too big for my mouth! but It does get a little better during the day.

At the moment I am making Christmas cards ( a hobby I love), but cannot do it for too long as my hands get cramped and feel like cotton wool. Even though it is a sedentary occupation I feel very tired after 2 or 3 hours.

I still have to use a wheelchair if we are going any distance, though I offer to push myself uphill when the going gets tough for mbm! I need something to lean on when walking and am terrified of steps when there is no guardrail..

Every day I count myself very lucky that I have survived GBS so well and even now there are some small improvements after over 2 years.

I think that’s all for now.

Everyone says I have made a miraculous recovery, but I knew I would as my eldest son told me this after GBS was confirmed. He read all he could on the subject on the internet and assured me I would get well in 6 weeks, and I believed him!

As time went on I realised it would take a lot longer and when I left rehab after 6 months, I could just about walk with a zimmerframe, turn the page of a book with difficulty and feed myself with a spoon.
Once at home with my ever patient husband, I think things got easier in leaps and bounds- even in a new house!

When the sun came out last June it seemed to me that it was time to improve even more and become more interested in everyday living and organising the home to my fancy (I think most wives organise the home!)

So where are we now?

We celebrated our 40th wedding anniversary with friends and family last month and yesterday evening spent drinking champagne with strawberries and cream on a warm Summers evening on board a Silhouette yacht just bought by my husband and a neighbour. we watched all the activity on the river including the ferries coming in and out and then had fish and chips in our garden round our new table, the garden lights coming on at dusk.

Today we are discussing the purchase of a water feature. Last month we spent a few days in our new caravan in France (in the rain)! I am glad I didn’t pay any attention to the advice I received when I was ill to sell the caravan as everyone thought I would never be able to enjoy it again.

Of course I know I am lucky that I am so well and can lead an almost normal life but I can also complain that I still cannot walk very far- eating is still very difficult as my teeth do not meet together so chewing food is impossibe. Its tough that two of my favourite foods are meat and nuts!. I am wondering if this problem is not GBS related at all and could have been caused by the ventilator tubes?

My hands feel like sandpaper and do not always function as required- my grip is not strong and my hands are “trembly”. I still have problems dressing myself.
But I cannot complain too much as I have made such a wonderful recovery from such a terrifying ordeal.

My thanks to everyone who has followed this blog.

I tried to do more exercise by walking  the deck when the ship was not pitching and certainly feel better and ready to get on with my life – doing more cooking and housework [!].  During the cruise I obviously spoke to people and explained what is wrong with me and not surprisingly very few people had heard of GBS except those who worked in Medicine.  However I met one lady whose uncle had contracted GBS in his eighties and made an excellent recovery, only to climb a ladder to clean gutters and had fallen off the ladder but had recovered pretty well from that. Also another lady whose cousin was still paralysed after five years – how lucky am I.

I still have a big problem with eating as my jaws are not in alignment and therefore I cannot chew properly meaning that I have to more or less suck my food. Unfortunately that does not seem to be getting any better. Its all, I am told by the medics, to do with proprioception in  relation to the mandible and masticatory muscles. Apparently this “phantom bite” scenario is extremely rare in cases of GBS and it would be encouraging if there is anyone out there doing any research on this.

Having said this  I tried acupuncture during the cruise but am not too sure that it made much difference except that my jaw became a little less stiff. I will probably try it again.  My hands are still a bit stiff and they feel as if they are covered in oil and sand.  Walking far is still a problem but then it was before GBS,  so I use a wheelchair.   I would certainly recommend a cruise as an ideal rehab holiday. The crew on the ship we were on were so helpful especially the waiters who tried to see that I had a suitable diet (!) even cutting up my meat if I chose that from the menu. Unfortunately  I invariably left most of my food (being very slow to eat I tend to stop eating when other people have finished) but I was always asked  if I wanted anything else.  I was nervous at the start of the cruise as my eating can be a problem and eating with strangers might have been embarrassing as you quite often have different people on the table but it was OK.  Thank you fellow cruisers!

I hope we have warm summer as the heat was certainly of benefit and thank you all for reading this blog.

Her Maxillofacial Consultant has told her that all these symptons are explicable in terms of her GBS and that Jennie’s case is rare inasmuch as her proprioception has become altered in relation to her mandible and masticatory muscles.
In other words the nerves that fire up the muscles that supply information about how she should move her jaw up and down are still damaged giving rise to the overall discomfort and frustration about eating and talking normally. All this she says ‘is now slightly annoying’.
However he still feels there is room for improvement in these areas and that there is no underlying problem with her teeth.
As with all sufferers of GBS we have come to realise that one has to be patient and that hopefully next year will see some further improvement in her mouth-jaw and speech, and her hands.
So little is known about this condition that always we are told that any cure is in the hands of nature and that no treatment is available or appropriate.
Slowly slowly…..

We are busy with an extension to the kitchen with completely new units which will be fab when all finished and I can sit there and cook and watch TV. Again as my hands are so weak the Christmas deadline is even more important from a cooking perspective.

We have also been meeting up with fellow caravanners who have not seen me since I got GBS but they have been kept informed via my blog. I think they were surprised that I have not changed too much except for my mouth and difficulty in eating anything solid, and that I can walk, albeit only a very short distance. My main blessing is that I can talk reasonably well and laugh and enjoy the company of so many old friends. This month I am meeting up with three of my oldest friends, one I have known since childhood, another who now lives in Australia and the third I met whilst working in Paris in the 1960′s. I will have to brush up on my French but I will enjoy that.

So that is more about us and less about GBS which means I must be getting better,  but its ever so slow!

We seem now to be in the phase where she is waiting for nature to regenerate the damaged axons (electrical cables) of her peripheral nerves, a much slower and less efficient process than the repair of the insulating sheath (myelin), which we are told could take up to 2- 3 years. The axon is responsible for transmitting signals between the brain and the rest of the body and explains why the motor axon is having no effect on certain muscles.

The reality of what has happened has been made more acute by the acquisition of a new home while she was in hospital. As she says, she left the home she loved last June with tingling fingers and an arm that didn’t work. Six months later (via a stint on life support), she returned to a strange environment she had no say in choosing or fitting out etc. The inadequate kitchen compared to her pride and joy at the old house depresses her and whilst there are plans to extend it, that is another story for this blog as is the stress, strain and sleepless nights we have been through.

The emotional impact of acute GBS is now a real problem. Apart from the obvious questions of ‘will I make a full recovery’ and ‘will it recur?’ is a sense of depression and frustration as she is unable to return to her former interests and activities including card making, eating normal food and caring for herself.

Her sleep is regularly interrupted by a recurrence of the nightmares she had in hospital and difficulty in turning over in bed.

The good news is that she is pretty positive and enjoying her new slimmed down look; trying on new clothes and seeing her friends again but not from a hospital bed!

The good news is that like GBS, nature should in time restore the cranial nerves and strengthen the muscles in her head, indeed if you look closely you can see several indentations where the muscles have wasted away!

The bad news is that like the nerves in the fingertips, the cranial nerves are usually the last to regenerate so we are told there is still a long way to go before Jennie can enjoy a life of independency.