My name is Glenda and I am 53 years old. It is now 19 months since I left the hospital. Today if you were to meet me, you would not believe that I had ever been ill. Until I got G.B.S. I enjoyed very good health, but now I do tire very easily. Don’t get me wrong, I can still cope very well. I’m just not 100% but quite honestly, I do not know of anyone who has had this illness ever reaching full recovery. It is still early days yet and my hands still feel swollen, dry and stiff. My shoulders and arms always feel heavy, although I believe I am getting used to this. I am in pain from time to time, with my legs and feet being the main culprits. I walk as if nothing is wrong with me, but the muscles become very painful.
I dream of running again one day and having the stamina to return to full time employment. I have started to go to the gym and want to build up my energy levels. I lose my breath easily, especially when I bend up and down. I have tried massage, acupuncture, aqua aerobics, Chinese herbs, walking, all in the hope of gaining back my former self. You learn to live within your limitations and you don’t give up hope of returning to the former you.
They say it takes about 7 years to recover and what you lose is compensated by what you have gained from this experience. I think they could be right. This illness is one that really has you thinking about life. It makes you aware of people less fortunate and you count your blessings. You gladly make yourself available to help others. In essence, I think it makes you an even better person than you thought you already were. It is however, an illness you would not wish on your worst enemy. In reflection you feel that if someone had to have it, then you are glad it is you, because it is worse for loved ones who feel so helpless. This episode in my life only reinforces my belief that I have a truly wonderful husband and the encouragement and support that he has shown me throughout this ordeal has brought us even closer together.
19 December 1999
My husband Malcolm comes down with the Flu. I struggle on but show signs of the inevitable. We recall the previous year and our quiet Christmas in Perth.
We had promised ourselves that one year we would get away from the usual family madness that surrounds the festive season. We actually got our wish, as it just worked out that a work transfer in October, 1998 was to run over till August 1999. Leaving Perth then, we travelled for the next three months up the Western coast, through the top end and arrived back in Sydney in November. We realised how we had missed everyone and were eagerly looking forward to Christmas and the New Year.
25 December 1999
We are both confined to bed with the flu. After cancelling all Christmas arrangements, we spend a very quiet day together. Our family and friends try to convince us to join them for just an hour or two but as our daughters have three new babies born while we were away, we are not willing to take this chance. Everyone thinks it is hilarious that I have lost my voice completely and joke that Malcolm will indeed have a quiet Christmas. We begin to feel sorry for ourselves and realise this will be the 2nd Christmas in a row that we have not spent with families and friends.
27 December 1999 to 31 December 1999
Malcolm recovers and I start to feel a little stronger. I feel guilty that I am now stopping him from joining friends to celebrate the start to a new millennium. At about 11pm on New Years Eve, I convince him that I am feeling a little better and we watch the harbour bridge fireworks from the waters edge near home. I stumble a little but put this down to the fact that I have been sick. It felt like someone had given me a push to the back of the knee, making me buckle and go weak in the legs. Back home again, I complained that the under-soles of my feet were aching, so proceeded to bathe them in a foot spa. This I found did not help and I opted to go to bed. I left Malcolm downstairs with the TV, watching the various countries celebrate and see in the new year.
1 January 2000 to 19 January 2000
HAPPY NEW YEAR!
New Years Day 1st January, 2000 is a date I shall never forget. I woke to the sounds of lorikeets squawking in the tree outside our bedroom window. This is a sound I have always loved and thought, as I lay there in bed, I could encourage the birds to fly over to me from the tree. They love sunflower seeds and I have done this many times. Malcolm would sometimes complain of the mess the birds were making, but as he was still asleep, I thought if the birds weren't too loud, I might just get away with it.
I gradually became aware that I was not feeling right. I couldn’t exactly put my finger on it but I began to realise that I had strange pins and needle sensations in my hands and feet. Also, my mouth felt strange, rather numb but with a tingling around my lips. I started to pull myself up from my lying position but found this very difficult. Eventually I succeeded and swung my legs over the side of the bed. I placed my feet on the carpet and started to stand up. To my horror, I found that my legs just gave way on me and I ended up sliding to the floor. I didn’t have the strength to pull myself up.
I called to Malcolm and woke him up. Naturally he couldn’t see me, but came around to the side of the bed, almost falling over me on the floor. He asked me what had happened. I explained as best I could and he helped me back to the bed. I said that I felt strange and to call the ambulance straight away. (I had always wondered how you would ever know if you were sick enough to go to hospital.) I had no hesitation in knowing this was one of those times.
The ambulance arrived and after examining me, they came to the conclusion that I was just suffering an aftereffect of the flu and thought that I should stay in bed and relax. I assured them that some thing else was amiss and insisted that they take me to hospital. With both the ambulance attendants supporting me, one on either side, I gingerly tried to put one foot in front of the other until we had reached where they had left the bed- trolley. I was helped onto this, covered with a blanket and wheeled up to the ambulance and transported to Royal Prince Alfred Hospital. Malcolm left in our car and was to meet us at "emergency".
Upon our arrival I was wheeled into a corridor where there were a number of people lying on beds. A doctor from neurology joined the doctors who proceeded to examine me. They asked me to stand and walk. I told them that I could not without assistance. The female doctor insisted that I could and helped me down off the bed. She held onto both arms and assured me that I would not fall. I did not fall as I was caught on the way down by a couple of other doctors who were watching. It was decided that I should have a CAT scan after they were convinced that I was indeed unable to support myself. I was wheeled into another room where I was left for a brief period of time.
I was becoming anxious, as I knew Malcolm would be somewhere in the hospital looking for me. Someone went out to the waiting room and came back saying he wasn't there. After some time I asked them to please go and look again. This time they came back with him just as they were injecting me with a dye prior to the CAT scan. They did the scan and the doctors asked if I was feeling funny from the dye injection. I was in a completely confused state by this time. I didn't have long to wait for a reaction, as I soon started feeling itchy and hot and my feet began to ache terribly. Before I knew it my arms, face and anything visible started to swell and take on the appearance of a freshly cooked lobster. My feet were aching to such a degree, that I found it impossible to stay still. I was thrashing about the bed uncontrollably. Malcolm kept sponging my forehead trying to cool and calm me down, but I was making it very difficult for them to administer a shot to combat the dye from the CAT scan. I knew I had to try and keep still, and at one stage I caught sight of myself in the shiny steel handrails of the bed and terrified myself at my own reflection. Malcolm kept trying to soothe me and to give encouragement, saying that they would soon know how to treat me. Eventually they were able to get the anti serum into me, but it took another two or more hours for it to work. They could actually then, concentrate on why I was there in the first place.
I had become the most interesting patient in the hospital with small groups of doctors and trainees checking the reflexes on my knees, ankles and elbows with their little hammers. They kept moving my toes up and down and asking me to tell them which way they were bending them. I invariably told them up, when in fact they were pushing down, but as they were shielding my legs from view it was hard for me to cheat. Pins were inserted into various parts of my body, but as I felt nothing, I didn’t know which was the appropriate response. I was asked to grip the doctor’s hand as hard as I could, and to push away, or to pull forward. My strength was deteriorating at an alarming rate.
Time seemed to have grown wings and sometime in the late afternoon I was taken up to "the plastic surgery floor". It was the only floor to have any vacant beds. I had managed to free my body of the allergic reaction and finally I was settled in bed, even if it wasn't in the neurological ward. I was informed that a spinal tap would be performed shortly. It wasn't long before a very nice young man came into the room and I thought maybe he had lost his way in the ward. He looked about 16 years of age. He came straight over to me and told me that he was a doctor. He was going to perform the lumber puncture on me. After all that had happened to me so far that day, I thought it was par for the course. He proceeded to tell me exactly what he was going to do and then lost no time starting. I was to lean over slightly on the side of the bed and he was to administer a local anesthetic. I admit I felt a slight tinge when this went in but before I knew it, the whole procedure was finished. I hadn't felt the lumber puncture at all. He had the steadiest hands I think I have ever encountered. I was very glad he was so young and steady.
I was finally left alone for a while. Malcolm came in and the nurse informed me that as I had missed putting in my dinner menu I would be given a sandwich for tea. It was at that point that I realised I hadn't eaten at all that day. I suddenly felt starving. Malcolm suggested that he go and get me some take-away, but I assured him I would be fine. He left and had some dinner and went into his work to let them know what was going on, and to rearrange his working hours. Dinner came and beautiful smelling aromas wafted over to me from the other three women’s dinner trays as they were placed in front of them. A little later a sandwich arrived and was placed on my tray. Before I had the chance to open the plastic wrap on the sandwich, another lady arrived and apologised for the mix-up and whisked my sandwich away. I thought "great". I lay back down and began to get used to the idea that I was going to be without food until breakfast time, when another lady rushed in and put a dinner, complete with desert in front of me and left. Had she been a little slower in her retreat from the room, I would have had time to thank her properly. As it was, I was so hungry that I started on the food immediately, fearful of the fact that they would realise their error and whisk it away again and feeling guilty that some-one else would be enjoying my solitary sandwich.
The next number of days were frightening. I was subjected to neurological nerve conduction studies. I remember thinking to myself, of all the ways a prisoner could be executed, no one should ever be subjected to the electric chair. Various other tests were performed, more blood taken. Many more doctors and interns examined me. I remember being asked if I was afraid of confined spaces and if so, to keep my eyes shut while an MRI scan was taken. It would take about 25 minutes, so they said but in fact I remember it was over an hour by the time I was wheeled back out of the "tunnel’. Doctors appeared out of nowhere and kept examining me, doing exactly the same things as the group of doctors did before. Everything they did was extremely painful. The scraping of a pen on the soles of my feet was interpreted by me, as a very sharp knife slicing through flesh. I’d pull away from them in pain.
Eventually I was transferred next door to the ICU section and was placed into a private room. I was monitored every ten minutes. As I could not move my neck or turn my head, it took me a little time to realise that I was in a room by myself. I became very weak and it wasn't long before the only part of my body I could move were my big toes and my fingers. I thought how strange! Only a few days before when I was sick in bed with the Flu, I had amused myself by painting my toe nails bright red. I had not done this for many years, and now the only thing I could see that moved, were my bright red toes, sticking out the slit in the stockings. These compressed stockings had been placed over my legs to help with the blood circulation, along with the two needles I received each day in my stomach.
I felt completely trapped inside a body that I had no control over. My mind on the other-hand worked overtime. I became very emotional and dramatic. I didn't know what was happening to me. I visualised myself being a vegetable for the remainder of my life. I even begged my husband to leave me, saying that I never wanted to see him again. I don’t know what I would have done, had he taken me up on this offer, as I would not let the nurses, female or male wash me. I would wait every morning for Malcolm to arrive to help me have a sponge bath and then later, when I regained some strength, it was he who helped me shower.
I asked him not to tell our families I was in hospital. I didn’t want anyone to see me like this. They still did not know what was wrong with me and I was afraid the children and grandchildren might catch it. My daughters however, came within hours of being told and were horrified to see my deteriorating condition. I became very sensitive to the light and it became hard for me to open my eyes, let alone see. My eyes were so very sore. My room filled up with flowers and I felt very humbled. I could not believe so many people had wasted so much money on me. I was lucky that I was still able to breathe by myself, but constantly required the oxygen which was always attached - that is, when I wasn't blowing into a little contraption trying to make the balls float higher and higher. I did however, often find the smell from the flowers very overpowering and would request them put away from the bed.
At last they knew what was wrong with me and the doctors said it was not catching. I was told I had GBS. I was not told anything negative, in fact I was told very little. I was however, assured that I would have a very good recovery and everyone convinced me that I was going to be just fine. All our knowledge came from family and friends who were able to obtain information from the internet. At this stage I was hungry for any information that anyone could give me. I didn't want Malcolm to leave my side for fear of what else was going to happen to me. Each day I became worse and slid further and further into paralysis.
The Red Cross were unable to supply Intragram, which is a blood product used to help in the recovery of Guillain-Barre, so it was decided that they would start to filter my own blood. The nurse who specializes in this field examined me. She then informed me that I had very fine and unsuitable veins for this particular procedure. They would need to use veins on both sides of my neck. Visions of Herman Munster ran through my mind. I was in a special computerised airbed which was considered to be the most comfortable in the hospital. I had tubes stuck inside me, tubes up my nose, tubes in my wrist and now they wanted tubes either side of my neck. The Chaplain was holding my hand and praying that we would be given the Intragam from the Red Cross. She had started to visit me the very first day I arrived. Her strength and prayer gave me so much hope. They were wheeling me out of the room and she was holding my hand and stroking my arm when they received a phone call. The Intragram had miraculously become available and they wheeled me back into the room.
My sister and a close friend were in tears as they left the room and waited in the corridor. I was so weak and they were really worried. I think they thought I would not last the night. I must admit I knew I looked bad. Within a few minutes Malcolm had returned to be by my side and they started the procedure. Over the next 5 days I received 27grams of Intragram each day. Each day they would also give me fluids and glucose via the line that was permanently attached to my wrist. I was finding it extremely hard to drink the amount of fluids that I was supposed to have.
A couple of days after the treatment began, I felt some movement and strength come back into my arms and then gradually my back. I was able to show off and demonstrate to Malcolm how I could slowly pull myself up from the bed, with the help of the support bar.
Day by day, I marveled at the small accomplishments that I was able to achieve. I was given so much encouragement that I was always spurred on to reach new goals. I was visited by the staff from the rehabilitation centre and gradually learnt how to pull myself up to the side of the bed. Later, how to swing my legs around and with a nurse either side of me, I was gradually able to pull myself onto a wheelchair. I had eventually graduated from having a sponge bath on the bed, to being able to have a shower.
They used to lift me onto a portable chair and I would wait for Malcolm to arrive. My eyes would watch the clock, as it slowly ticked away the minutes. To me in my desperation, it seemed like hours. I use to cry with humiliation as Malcolm tenderly washed me and gave me so much encouragement and hope. Gradually I was able to hold the washer and wash myself, but I inevitably use to lose my grip on the soap and it would slip to the ground. I would be again reminded of my limitations.
Meal-times became a time when Malcolm would play aeroplanes with the spoonfuls of food, as you would a child, to try to get me to eat. I was encouraged to order just about everything on the menu, in the hope that I would be tempted. During this particular time however, the actual smell of the food made me feel physically sick. In desperation, I would ask them not to bother bringing it into the room at all, so we could eliminate this problem. I also thought that if I didn’t eat, then I wouldn’t need to visit the loo. Opening my bowels was a daunting prospect. Twice I was on the loo for 2 hours and once for 2 ¾ hours. This was usually early in the morning when they were even more short staffed. The nurses were never sure how long I was there for. By this time I was able to sit upright on my frame over the toilet. I still did not have the strength in my fingers to push the flush button on the right side of the wall. I used to judge my returning strength by seeing how easier it became to press this button. It took quite some days before I could actually flush the toilet satisfactory.
I gradually progressed to pulling myself up onto a walking frame and the first time that the physios tried to get me to stand upright and take my first step was incredible. They placed a chair about 9 metres down the corridor and with one either side supporting me, they helped me place one foot in front of the other. All I concentrated on was the chair at the other end of the corridor. It was such a long way away and I was just so tired. Gradually we made it and my reward was to sit down for about 3 minutes. They then informed me that we were now going to go back! I couldn’t believe it. It had taken so long to get there, pulling, stumbling and dragging my legs, and now I had to do it all again.
They didn’t give up on me and at the end of that session I felt so inspired and excited that I wanted to do it again. Next day was Friday and I did it again. This time I shuffled unaided. That same afternoon Malcolm took me for a ride in a wheelchair around the hospital. My first sight of the outside world for three weeks. On the way back, he asked if I wanted a coffee. I had dreamt of a cappuccino for days. He wheeled me close to the table and I could not wait to taste it. The only problem was that when I went to lift the cup from the saucer, I found that I didn’t have the strength. The cup was so heavy, that I almost cried. I was just so useless! Malcolm ended up holding it up to my mouth, but somehow my enthusiasm and desire for coffee had gone. Instead I felt humiliated and embarrassed for Malcolm, that he should be put in such a situation. I was sure everyone was watching. We came back up to the room and I was informed that I would be going over to the Rehabilitation Hospital, probably Monday or Tuesday. There seemed to be a lack of communication at RPA, as I had only just settled back into bed, when the ambulance arrived. The attendants informed me that they were downstairs and waiting to transfer me.
19 January 2000
The trip only took about 15 minutes and it wasn't long before my bed was pushed into a room with three other ladies. I was very tired but soon realised I needed to use the bathroom. I rang my buzzer by the bed and waited for a nurse to help me. After what appeared to be a very long time, I had still not had a response to my call and felt that I had no alternative but to try and shuffle on my frame, by myself. I had visions of loosing my balance and breaking a leg, but as the need became more urgent, I steeled myself for the task ahead and slowly made my way up the hall and around the corner to the bathroom. I could hear the laughter and muted voices of the nurses as I passed the nurses’ tea room and was to be told later, that they were on a break.
Successfully returning to my bed, I silently congratulated myself on a job well done and made a mental note to inform Malcolm of my latest achievement.
Saturday and Sunday are physio free days and it was on this first weekend at Balmain that I asked Malcolm to support my arm and to help me walk without the frame up and down the hallways. Monday dawned and I was already well on my way to walking.
The Physios were very impressed and saw that I was also handling utensils etc. without too much difficulty. They gave me a few lessons on how to walk up and down the stairs, hanging onto the railings of course. After the first initial assessment they thought I was doing just fine.
Tuesday I asked Malcolm to take me over to the park to feed the birds and to walk around. Every day I waited for his arrival and we would walk or rather he walked and I would stumble through the park and gingerly, up and down the stairs. Eventually I progressed to the extent, that we would walk down to the shops and stop for coffee. I was well and truly exhausted each time we came back. After I had been doing this for a few days, I returned to find the Sister in charge waiting for me with a very stern look on her face. I was supposed to sign out each time I left the hospital. It did make sense, had they had a fire, I could have jeopardised staff who would be looking for someone who had already left the hospital. I just wasn't told and thought as the nurses smiled each time I left, they would know I wasn't there.
Malcolm never gave the appearance of being embarrassed. I would possessively hold onto him, stumbling and often tripping on these daily ventures into the outside world among normal people. Day by day I gradually became stronger and by the seventh day it was considered I was ready to go home. I had had no physio treatment, except for that first Monday. I had progressed extremely well and assured them that I would be able to manage the many stairs at home.
The day I left was a public holiday- Australia Day 26th January, 2000.
Since leaving the hospital I have joined the G.B.S. Association and I visit new patients diagnosed with this complaint. I liaise with various hospitals, making them aware of our Association. One thing that sticks foremost in my memory, is the quest for information that I craved when I was at my lowest. How comforting it would have been to have actually been able to talk to someone who had been in the same position that I was then in. From talking to various members, I realise how lucky I was to have entered and left hospital within such a short period of time.
I have come to the conclusion, that if you are ever going to become ill and require hospitalisation, especially with a rare illness, such as G.B.S., then do so, at any time of the year except over the Christmas/New Year break. Most experienced doctors are either on annual leave or out celebrating the New Year. It takes twice as long for results to come through and it would appear that an already short staffed hospital, becomes even more short staffed.