I am from regional Victoria; May 2009
Some three and a half years ago, at the age of sixty (and recently retired), I became one of the GBS family, a rather exclusive group which randomly chooses new members and inducts them swiftly into a new life.
Thankfully, help was at hand through my alert local GP who knew immediately what was happening and arranged for specialist intervention at our local country hospital. For someone who had previously enjoyed excellent health, it was a rude awakening.
On my first day I was initially placed in a single room in a vacant ward and left to my own devices. Unable to walk (and no one thought of offering me a walker), I dragged myself across to my en-suite washroom and then back to sit on the bed - a massive effort at that stage. I must have managed to eat something for lunch, although I couldn’t use utensils to cut any food. In the afternoon I was given a lumbar puncture, with an interested audience of student doctors, and left to rest (there wasn’t any option to do much else).
Next morning around 10 a.m., I was told that an appointment had been made for me with a neurologist at an outer Melbourne hospital, some 250 km away, and I would need to pack up and get there by mid afternoon at the latest (how to get there was up to me)! I was in effect ‘discharged” at that point and required to vacate my room (but return directly to the hospital to be re-admitted that afternoon/early evening).
Within the hour my husband, daughter and self were on the road. At the next hospital I was moved by wheelchair for the testing, and before long, back on the road home. I was readmitted, unpacked and settled into the intensive care ward by early evening, whereupon it was decided to move me (in my bed) into the general ward.
The administering of intravenous immunoglobulin began immediately the next morning and continued for a number of days following. Although reluctant regarding any type of blood transfusion or similar treatment, I was convinced by those whose knowledge was far greater than mine that this approach was indeed advisable, and quickly!
My wonderful husband was a tower of strength through the whole process, attending the hospital each morning before breakfast to help me shower, get dressed and prepare for the day’s activities. I think the very fact of being dressed for action was a positive step.
Aside from the usual ‘during the night’ sleep interruptions from the nurses, one evening I was awakened by someone pulling back the covers and attempting to get into the bed! This turned out to be an elderly patient who was somewhat confused about where she was. All I could do was stretch out one arm and try to keep her out! With some difficulty, I called the nurse and asked her to please ensure my persistent visitor stayed within her own boundaries, whereupon I was asked if I would like a sleeping pill so that I wouldn’t be disturbed!
On another occasion, while trying to walk around my bed unassisted, I managed to fall over and couldn’t get up. This prompted a rush of staff to my bedside, but eventually by turning myself on to my knees and with some help I was able to be resettled back on top of the bed.]
Virtually straight away I was shuffled off on a walker to physio, then graduated within days to the challenge of elbow crutches. I was making some progress now, although painfully slow, and by week’s end was judged well enough to return home.
The hospital had made provision for various aids to be installed in the home, without which there was no way I could have managed. I needed help to get out of bed and assistance with showering and very basic needs. Once home, I attended physio regularly and found myself struggling to shuffle with baby steps. Fortunately my hands recovered remarkably well and that gave .me great cause for optimism. The first year of recovery was exhausting and progress slow, so very slow. Rising from a seated position was a real trick. It was a difficult time and emotionally draining. Life had changed overnight. Fortunately for me, Mary McAlister’s empathy, encouragement and gentle support was at hand. A thousand thanks, Mary!
Improvement continued (sometimes almost imperceptibly) as weeks turned into months. A legacy of weakness has remained with me after almost three and a half years. I have always enjoyed walking, but nowadays have had to moderate what I am able to do. The cooler weather best suits me.
I have discovered by trial and error over the seasons that the summer heat reduces my legs to rubber, so my mobility is greatly affected in the warmer months. The rest of the year, I can walk a little but tire easily and have to pace myself as to what can realistically be achieved.
Standing for any length of time is to be avoided. There is a residual weakness which now appears to be permanent. When I’m feeling “strong” in the cooler weather, walking is fun and takes me back to what used to be, but if I do too much my legs ache for the next few days. I am able to drive, which is a further big plus.
Another problem I experienced was finding the right footwear. An orthotist prescribed special shoes with heavy soles. Initially I thought these might work, but they made my feet hot at the best of times and impossible to wear in warmer weather. I visited a podiatrist who suggested insoles and “Naot” sandals. Then I reverted to a type of walking sandal which I had used prior to GBS. I alternate these with good quality sneakers.
Overall, for best comfort and walking, the sneakers are by far the best choice.
Did anyone else notice that the mystery cause and onset of GBS may possibly have caused a friend or acquaintance to back off - understandable in the circumstances, particularly if they have the wellbeing of children to consider.
After reading of the horrendous trials others have endured, I hesitated to submit my story, but all of us who have experienced GBS can relate at some level with each other. It’s a life- changing event and considerable adjustment is called for in accepting the new “normal”.
My best moment, I believe, was visiting the beach some months into the experience, and the freedom of wading through the sandy water was just wonderful! One step forward at a time is fine, and finding the positive in each new day is absolutely achievable by all of us.
Hope, trust and believe in your future -
My best wishes to each and every one of you !