Time for another blog after 2 years on from the start of GBS.
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.
6 comments
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July 16, 2011 at 6:38 pm
Barbara
Hello.. next Friday, July 22, I will be 2 years out from my onset. I was struck down in 24 hours, going from completely fine (as far as I knew) to paralyzed from the neck down in 24 hours. I have a numbness in my finger tips, but am back to typing pretty much as pre-GBS, am now living alone (as I was before) in a 3 bedroom/3 level townhome (I wasn’t before), managing the stairs without too much difficulty. My feet are in constant pain and tingling, and yet at places still numb. My neurologist says that I may still improve, but i think I am maxed out.
I was down for 5 months before I could even begin physical/occupational/speech therapy, and contracted pneumonia 4 times. I was trached, and also had the garden hose down my throat. I was on travel status for work when I was struck, so I ended up being in 3 states and 7 hospitals. I now have a “crack” noise in my jaw when I move my bottom jaw. I have a constant ringing in my ears (oh…I went stone deaf for about 3 weeks too), hear as if cotton is n my ears all the time, have almost constant headaches, and the list goes on.
But I walk. I walk without braces (since November 2010) and without a cane (since January 1, 2011) and I can drive (January 20 2011). I traveled to Italy in June, 2010, for my nephew’s wedding (which was a goal while I was in recovery), and traveled alone with braces and a cane. In fact, I ate 2 or 3 croissants with nutella every day for breakfast, had at least 2 lattes for breakfast, ate pasta every day, had at least one serving of gellato every day, and lost 4 pounds. I tell everyone it was walking with the heavy braces.
I’ve written a short memoir, and have thought about how to publish it, but don’t know how to start.
Like you, my family was there for me. My friends were amazing. I never knew how loved I was until this happened to me. And I never knew how important they all were to me. So there is a silver lining in all this…
Best to you.
Barbara
August 7, 2011 at 12:14 pm
jemsec1
I am lucky enough to have a wonderful husband to look after me and a hospital nearby that knew what treatment I needed.. Do you remember when you could first move a finger and how wonderful that moment was? When I complain that I can’t eat what I want, friends say ‘but remember how you were and how much you have recovered’, but we do have to live with it.
Let’s hope your neurologist is right and there is still time for improvement. I missed being trackied by a few hours and remember the doctors discussing the pros and cons with my husband. I was peg fed for 5 months. I am lucky that I am not in pain and do not need to use a stick.
August 1, 2011 at 4:49 pm
Ramesh
Hi.
It is so heartening to hear your story….. I have very recently been diagnosed with GBS….. still freaks me out that a common flu can cause so much damage….. While the extent of my damge is less severe…. as in I can eat pretty well…. there is a lot of numbness in my leg, and i cant walk steadily (doctor says I have lost balance) and my lips always curl up like Elvis’s when I try to smile…… hopefully some day I will also feel better
Regards,
Ramesh
August 2, 2011 at 9:41 am
jemsec1
Hi Ramesh
Sorry to hear about your GBS – just remember you can get better. . GBS=Getting better slowly. After 2 years I can walk without a stick though very slowly and not very far . I suffer from back ache which I don’t think is GBS related. Eating is very slow and every one gets up from the table before me! Perhaps its an advantage to look like Elvis but can you sing like him! My lower jaw feels like its shrunk and doesn’t fit my mouth. i am hoping that nature will do its bit for my cranial nerves like it should do for the nerves in your leg.
Best wishes
Jennie
August 7, 2011 at 12:25 pm
Barbara
Indeed Ramesh, you are luck, in the GBS arena. It was 10 months before I could maneuver my fingers to use a keyboard. When I could, my friends (as I did) rejoiced. I was FLOODED with email asking questions about the disease.
I guess they have identified (as much as they can) that you contracted GBS after having the flu. They cannot do that for me. There was no flu, no fever, no vaccine, none of the ‘usual’ triggers. My neuro said that the only normal thing about GBS is that it is not normal.
Wishing you all the best. You’ll get stronger. Your lips will get better, but it helps to have a good speak therapist. Mine was AMAZING. He even got me my first Diet Pepsi in 10 months. My hero!
Barbara
August 7, 2011 at 2:02 pm
Ramesh
I do not know if Im breaching the limits of this discussion, but I have been trying alternative medications also. Being an Indian Ayurveda (traditional Indian Medication) is available to me easily. My doctor says that more than the infection itself its a problem with the balance of elements that constitute a human body and that is a major cause of all auto immune problems. He gave me a few medicines and suggested me breathing exercises. I can see recovery for a week now and By God it feels so good to whistle, though Im scared I may whistle in front of a dame and she will strike me with her sandals, but if anyone feels the guts they may also want to look at alternative medication (but only once you are out of ife threatening situation)