I am never likely to forget my 65 birthday. July 2015 was when GBS became part of our lives. I wasn’t feeling quite myself that day but was up and about seeing family and friends who came with birthday wishes. I had been aware for several weeks of a ‘strange’ feeling in my right hand. It wasn’t numb or frozen but there was something strange about my sense of touch. I was also slowly becoming aware that I was dropping things more than usual.
Later that night (Saturday) things changed dramatically. By 2am the next morning I had no feeling in my legs and couldn’t walk or stand! I decided my husband should call an ambulance and I was taken to our local hospital. After a day spent in Casualty I was admitted to an assessment ward. I was not particularly worried at this point as I had suffered spinal disc problems most of my life. I assumed I had trapped a nerve in my back and somehow all would soon be sorted!
One week before GBS
Over the next 12-24 hours my condition deteriorated rapidly. The paralysis was creeping up my body and apart from my arms becoming useless I was struggling to breath. Next morning (Monday) I had the greatest good fortune to be seen by a visiting specialist (Neurologist) who recognised my condition immediately and quickly arranged my transfer to Intensive Care. A couple of days later my last lucid thought for many weeks was a doctor asking my permission to intubate me as my breathing was laboured with the caveat that he would need to do it soon anyway but would rather not wait until it was an emergency situation. It’s strange how calm I felt but it was the only obvious course of action, by this time I was exhausted and would not let myself sleep as I was sure I would stop breathing! It never occurred to any of us that this would be the last time I would speak to my family for months! I remember telling my husband that I only wanted him and my girls to see me in this condition.
While on life support
I spent the next eleven weeks in intensive care on life support. I received one round of IVIG immediately and although I continued to deteriorate for some time I credit this intervention with my good recovery. My family visited daily and thought I was lucid and responding during visits but in my head I was living a completely different reality. I have read many accounts of patients having terrible nightmares or being distressed when ‘locked in’ as being so disabled they had no way of passing the time. I think I must have been very well medicated as I have only a few fleeting thoughts of these weeks and only remember a couple of occasions when my pain was briefly out of control. As I have said in my mind I was living a different reality, a not entirely sensible one at times but certainly much more ‘real’ than a dream. Eventually my medication was reduced around week ten and I started coming to the surface. I had no discomfort as I was weaned off my tracheotomy.
Once out of ICU I was transferred to a general ward at another hospital. This was a traumatic time as I was still fully paralysed though breathing for myself but my vision was still very badly affected and I could not read or watch television to pass the time. The staff were ill equipped to cope with my level of disabilities and it didn’t help my state of mind that all the other patients were VERY elderly. I felt I had been written off. The support of my husband and family was crucial at this time with my husband spending most of the day with me providing emotional support and to help with feeding etc. and my daughters visiting every evening. I also began accepting other visitors and was fortunate to have friends and family re-appear to see me.
Feeling in my limbs came back slowly and was accompanied by a certain lack of control and involuntary movement which persisted, particularly during sleep for at least a year. I spent another eleven weeks in hospital very gradually recovering feeling in my hands, arms, feet then legs and having as much physiotherapy as I could access. It could have been more intensive but by the time I left hospital I could walk briefly with the aid of crutches or a Zimmer and had the use of a wheelchair. A few months later I had regained enough strength to begin attending a local gym under the guidance of a personal trainer to slowly build my fitness levels. My ongoing medication of pregabalin, and amitriptyline continued until one year post diagnosis being reduced slowly as advised.
Today almost two years later I have quite a few annoying residuals…..numb fingers make handling money difficult, slight facial paralysis on one side, the common ‘crawling’ sensation in my lower legs, cold ankles and feet, occasional nerve pain, mild word finding difficulties, lowered stamina and fatigue etc. etc. However considering the gravity of my illness I know I am very fortunate to have recovered so well and regained my independence. I also consider myself lucky to be retired as my concentration and attention level are not what they were. I could not have returned to my previous professional position.
To anyone who has a loved one recently diagnosed I realise that this is a very difficult time. I cannot imagine how my family felt visiting day after day, week after week and seeing no improvement in my condition. However ICU is the very best place to be at that point to have all their basic functions supported. I don’t remember most of the people who looked after me in that time but in my last few days there I was very aware and appreciated fully the quality of care that kept me alive. Most people who develop GBS survive and their health improves in time though it can be a long and difficult road to travel.
Marlyn Graham, Larbert. SCOTLAND
