GBS – THE HORROR AND THE HOPE – MY STORY
MARION OOSTHUYSEN
DAY 1 . On 23rd December 2008, as I went about my housework, I had sensations of prickles and pain all over my body, as if I had been in a bed of nettles. In the afternoon I went to the kitchen sink to wash up some dishes and realised that the tips of two fingers in my left hand were feeling strange - sort of prickly and numb. Seeing as I have some Cardio Vascular problems, I worried that this may have something to do with my heart, so made an appointment to see my GP the next day.
DAY 2. The next morning I had the numbness in all the fingertips of both hands and now also the toes. Next day at the doctor, he tested for sugar, cholesterol, thyroid - all with OK results. He gave me a Vit B12 injection and said we should wait for improvement or developments. He assured me it was not a stroke, as this would affect only one side of the body - but then what could it be??
DAY 3. The next day was Christmas and I felt awful, in church I was uncomfortable sitting upright and my hands and feet were now more painful and numb at the same time. I could hardly use my knife and fork to eat Christmas lunch. I could not touch anything without extreme discomfort in my fingers. Sean and Natalie had to help me open my Christmas Presents. Towards evening I started with nausea and terrible stomach pains spreading round to my back - like labour pains. The pain was unbearable and went on all night - no pain killers helped - I just rolled around the bed in agony all night.
DAY 4. At 5.30 am my husband took me to hospital as this was a Public Holiday and the doctor's surgery would not be open. After a few questions, they took me through to the ER to start trying to establish the problem. They did all sorts of preliminary tests, including physical examination, Blood Pressure, lungs, ECG. When I mentioned the numbness, a doctor came and tested the under part of my toes with a needle. It was strange, I could answer him as to where he had pricked me, but the toes felt numb, nevertheless. They then decided to send me through for X rays of the lungs and cervical spine. When these came up negative, I had to go for Ultra Sound scans. This showed a slight thickening on the stomach wall, so they then wanted a CAT scan. They were obviously looking for something which would cause pain in the middle region - perhaps kidney stones, gall stones, they even checked the descending aorta for a possible rupture. All this took the focus away from the numbness. Meantime, the excruciating pain in the waist area was continuing unabated. I was beginning to be worried about the reason for my symptoms - all the tests were coming up negative - a relief in one way, but I needed them to know what was wrong so they can treat it. Eventually they decided to admit me to the hospital for observation and blood test results. In the ward my torment did not cease, the pain killers they gave me were not effective and the standard of nursing was not good - they kept me waiting for ages if I asked for pain medication, but I could hear them chatting away in the nurses station as if they had nothing better to do, and they were very noisy also. The pain in the middle was so bad I kept kicking my feet in the bed in an attempt to divert my thoughts from the unending pain
DAY 5. The results of the CAT scan confirmed that there was a slight thickness on my stomach wall, so now they wanted to do an endoscopy - swallow the camera. Just before they put me out, the doctor introduced me to the Anaesthetist who asked me how I was. Again I emphasised the numbness and the doctor said to him " I think she has some sort of Neuropathy" My neurologist later was horrified at this - firstly that they suspect a Neuropathy but don't follow up, and secondly that they went on to give me anaesthetic - apparently this can be quite dangerous in GBS. Anyway, the camera revealed that I had a couple of small ulcers and hiatushernia. Dr O seemed very happy to have "found" the cause of the problem - he is a surgeon and that is his field, and of course, they had made sure they had done all the expensive tests on me - thus making their contribution to the hospital profits. That's how I felt anyway. Dr O gave me a prescription for ulcers and said to go home. I once again asked him about the numbness, he said to report back if it spread. Since waking up from the anaesthetic my legs were very shaky, but seeing as I had never had an anaesthetic before, I thought this was normal. So I was discharged home. The pain was continuing without respite and I could hardly stagger around the house.
DAY 6. The next day I tried to do my normal things, but I was feeling awful - the pain was unending and the numbness spreading up my arms and legs. The shakiness getting worse, too. I phoned Dr O and he said he would get Dr L - a physician - to phone back. Dr L asked questions and said it could be many things, and did mention GBS, but said it did not sound like life or death at that point in time, so I was to visit him at his rooms in the morning. (Monday)
DAY 7. Monday morning my son in law drove me to the hospital and I managed to get out of the car and make my wobbly way to Dr L's rooms, occasionally staggering and holding onto the wall for support. Dr L started his examination. When he could find no reflex in my knees and ankles, I knew I was in serious trouble, but the reflex in the arms was still there. Dr L seemed nonplussed and sat behind his desk checking up something on his computer. He said words like - " Gee I don't know, I am not sure, it may be GBS, but I don't quite know what is going on, perhaps we should re-admit you and do a MRI". Talk about instilling in me a total lack of confidence in him, I was getting quietly desperate, and so weak and weary, and full of pain. I knew there was something horribly wrong when there are absolutely no reflexes in the legs or feet. I could only stagger to the wheelchair and be wheeled to the reception to re-admit myself. I was so shaky and full of pain that I could hardly complete the many forms they required to be completed. I felt afterwards that if Dr L was so unsure, why didn't he refer me to a Neurologist then, at that stage instead of wasting time and money on further tests. It was, after a working day, not a Public Holiday. Anyway, I was re-admitted and phoned my family to tell them. My daughter came to be with me while I had the MRI, as I have had one before for a neck problem and got very claustrophobic. I was then admitted to another ward, this time a bit further away from the Nurses station, so it was a little quieter. Here I had another barrage of blood tests, urine tests, they even wanted a stool specimen to do a Porphyria test, which I was unable to supply before I left the hospital anyway!!.
DAY 8. The next day, I was getting progressively weaker, could only stagger to the toilet holding onto the wheely thing they hang the drip on. The pain was continuing and numbness spreading. Dr L did his rounds and told me the MRI and the million blood tests were all normal - and that he thought I must see a Neurologist - there wasn't one at this hospital, but he would try and find one. I was getting panicky, all tests were coming up normal - what was happening - where are some answers, when was this nightmare going to end? Another strange symptom was that sound appeared to be amplified, I seemed ultra sensitive to sound. When I had to use the phone and it felt like the noise was going right through my head. Any noise around me caused a terrible pain in my ears and head.
DAY 9. Next morning - this was now New Year's Eve and Dr L did his rounds. When I told him I was feeling really weak, he asked me to lift my legs in the bed, and I couldn't. His eyes got as big as saucers, I could visibly see his shock. He rushed off muttering that he needed to find me a Neurologist. An hour later he returned, stood in front of my bed and said he was sorry, he couldn't find a Neurologist on duty anywhere, he had tried three other hospitals with no luck. I suspect he did absolutely nothing in the last 24 hours since he first said he would try. Now I was devastated, I desperately needed a diagnosis and Dr L just shrugs his shoulders and says he "has tried all over and cannot find a Neurologist on duty, it is after all, holiday time, maybe we will have to wait until Monday when everyone should be back!!!" Another five days!! What if my case was one of those that progress from numbness to total paralysis, including cessation of breathing within a space of a few hours??? How pathetic. And how come, within half an hour of looking on the Internet, going from A to Z, my daughter Debby found Dr B at Constantia Berg Medi Clinic?? Somewhere in a city the size of Cape Town, there must be a Neurologist who is not on holiday!!!! I am now crying in desperation and feeling so weak I cannot take control of things and sort this out myself. I was absolutely disgusted with Dr L - pathetic service. I discharged myself from this hospital and Dr O passed me in the corridor as I was wheeled out in the wheelchair. He smiled and said he wished me luck. I felt they were glad to be rid of the problem, and they had done their duty to the hospital by putting me through all those expensive, and unnecessary tests. I went home for the night. It was New Year's Eve and we had planned to have a party at our home, which had to be cancelled. My husband, however, celebrated with his whisky bottle on his own and passed out in bed early. I couldn't lie down, I was in such agony, and using a kitchen stool to support me, battled through the night trying one chair, then another, in a maze of pain, weariness and worry. When I needed to wee, I had to hold a plastic bowl under me standing up holding onto the bar stool, I could not risk sitting on the toilet, as I wouldn’t get up again. At the stroke of midnight I could hear the fireworks going off, and the neighbours celebrating the New Year, but it was definitely the worst New Year I had ever experienced.
DAY 10. At 6 am next morning, I woke my husband, as Dr B had said I must admit myself to Constantia Berg Medi Clinic at 8 am, and it is about an hours drive away. The admission was a blur, I had to be assisted from the car to a wheelchair, Debby had to attend to the admission paperwork. I was taken to the Neuro Science Ward and then put in bed. I lay there in hope from 8 am that Dr B would come along and help me - I was becoming more and more uncomfortable and needed to feel that someone who knew what to do would bring my torture to an end. Unfortunately there had been some misunderstanding with Dr B, he had said to admit me at 8 am and we thought he would be along soon after that. But by 1 pm, he had not come. Every time I needed the toilet I had to be carried there by my family, and I had no pain medication for the excruciating pain. By this time we were all desperate and our appeals to the nursing staff seemed to have no effect. My son had phoned Dr B, but his phone was off. The nurses tried to raise him at home, but he was out to lunch. My family decided to try and raise another Neurologist and found Dr K at the next suburb's hospital. At one stage, I was so frustrated, I told my family to take me home so I could just die there , I was obviously not going to be helped by any of these hospitals or doctors. Meantime, pain, numbness, itching and burning - and the paralysis were continuing unabated. Dr K made his appearance and examined me and said he thought it was GBS and would like to do a spinal tap to confirm. Just after this Dr B arrived. So now I had two specialists attending me!!! The two doctors consulted together, did the Lumbar Tap and told me it was Guillain Barre. I had read up on the Internet about possible causes for my symptoms while I had been at home the day before and had arrived at the same conclusion myself!! Of course, in my innocence I thought, well now that they know what is wrong, they can fix it!!! Little did I know there was nothing much they could do except watch the progress of the disease and give life support if necessary. But at least they put me on decent pain medication that eased the pain better. Dr B then took over and explained that he needed to observe me for a while to see if the disease was still progressing, or stabilising. In the evening a nurse came to help me shower, and I managed to hobble down to the shower room with a walker. The experience shook me up a bit, as it only underlined how paralysed I was becoming. Back in bed all I wanted was relief from the pain. That night I had to have several pain killers and even a Voltaren injection before the pain eased a little.
DAY 11. The next day, the Spinal Tap results came back - diagnosis confirmed. I still had no treatment - just observation to see if the symptoms spread or worsen. Dr B explained that GBS typically has a period of about two weeks when you worsen, then about two weeks when you stay the same, and then the improvement starts. So now the worrying time set in - no-one knew at that stage if I was going to stabilise or get worse. I became ultra aware of every little symptom. I felt better to have a diagnosis, but now I had to realise that my pain and worry was not going to end - it would continue for heaven knew how long. But at least at this hospital, the doctors and nurses were sympathetic about providing pain killers and the service was fantastic - the nurses came immediately you rang and they were so quiet. One of the reasons, I suppose, is that it was the Neuro Science Ward, and caring for patients with Neurological problems, including a special section for Epileptics, which happened to be right outside the door to my room.
DAY 12. Morning came and my symptoms were about the same. Dr B arranged for a Physiotherapist to attend me - she came and my first session was only a sort of assessment of what I could and could not do. Dr B told me I had a mild form of the disease as it did not seem to be spreading to all of my body. I hated to think what a severe form is, I was suffering so much at this level. I now had terrible itchiness all over and pain across my middle section. All the skin on my body was numb, except from my neck upwards. Dr B felt that he should not give me any treatment such as IVIG or Plasmapheresis as it may speed up the recovery by a few days, but there was a real risk of kidney damage. He and the physio took great pains to tell me of the severe cases where a person gets totally paralysed and has to be on respirators in the ICU and this can go on for months, recovery very slow. I really did not need to hear that, I could not even begin to think of that - and I wasn't yet convinced that I would not deteriorate to that state.
DAY 13. Another day dawned - My weakness seemed a bit worse in the middle region, but not spreading to other parts of the body. Dr B just kept asking if I could breathe OK and if I could swallow. I had extreme tingle/burning in the palms of hand and fingers, it felt as if my hands were being immersed in boiling water all the time. I could not bear to touch anything, but had to do things for myself. I had another physio session. Kept waiting and watching to see if the symptoms got worse - terrible emotional stress. Having the physio was actually bad in a way as it only underlined to me what I could not do. My mind was at the realisation of how bad I had "gone down". How could this be happening to me, how could I be paralysed? I could not do so many things - if I wanted to slide my legs sideways to get up, I had to assist them with my arms, they could not move on their own. I could lift myself up to standing with the walker, but only using the strength in my arms, my legs did not do anything to help me. I could not sit upright without my arms on either side supporting me. I could not feel anything with my fingers, picking up anything was torture, could not read with my blurry eye. I had been lent a laptop and I decided to keep this journal, but typing was a nightmare. And I was sweating so much, but my hands and feet were icy cold. I didn't know if the weather was hot or cold. In the meantime, my family was also very concerned, this was something out of the blue and they also battled to get their minds around it. I have never had a serious illness in my life and now it looked as if I could be bedridden, if not permanently paralysed for some time to come. At one stage, I was so desperate and in such pain, I phoned my husband and asked him if he would bring the gun and just put me out of my misery. This did not help him and the rest of the family very much, but I was really thinking I would rather die than live with this torture another minute.
DAY 14. The strength/weakness seemed on the same level, but the tingle/burning in palms of hand and fingers was extreme. I had another physio session and was feeling more confident getting to the toilet using the walker, but then I fell - all I did was move slightly sideways in order to line myself up with the bed to sit, and my legs just weren't "there" - there was absolutely no response from my trunk downwards, nothing worked, and I went crashing down to the floor - so frightening and a terrible worry that I would be like that forever. My confidence now thoroughly shaken, I just wanted to die. I felt that I was 63 years old, had had a good life and always hoped I would die quickly, without pain and without troubling my family. I felt I couldn't face life if that was how I would be. I felt that I was not getting better, and would remain in this torture forever. It is the most indescribably frightening thing to have your body not responding to your brain's instructions. I kept thinking about my mother who had been struck down with Polio ( or even GBS???) when she was 37, and I was 2 years old. She had recovered, but was handicapped for the rest of her life, and I had grown up with a disabled person and knew at first hand all the heartache that it entails.
DAY 15. I had a bad night worrying about if I was worsening, bit of a Panic Attack and lots of back pain again. Lying in the bed all day, I was acutely conscious of my every symptom, kept looking for signs that I had improved, and panicking about the symptoms that seemed to indicate that I was worsening.
DAY 16. By now I was very weepy and worrying about every little twinge. Dr B decided to put me on anti depressants and anti anxiety pill and asked me to talk to a psychologist. My husband and a friend spent the day with me, bringing me some homeopathic medicine they had found which was supposed to rebuild nerve pathways. They also gave me a rub with healing oil, which provided much relief from the itching and burning for a while. I felt a bit better, but toward evening got a bit panicky again - scared to try and stand up again. Feeling terrible, pain all the time and no signs of improvement. So many frustrations and feelings of helplessness struck me - small things that one takes for granted - you are given a pill, but cannot pop it out of the bubble pack. You drop something and cannot get it back. You want to listen to the radio, but someone has unplugged it and you cannot reach the plug, never mind push it into the socket. You hear the phone ringing, but you struggle to get to a sitting position, then fumble to get the drawer open, then your fingers cannot push the button to answer - by then it has stopped ringing. You go to the toilet and cannot feel if you are wiping properly afterwards - your butt is numb and so are your fingers!!! And then your hands are so sore, you don't want to wash them. You cannot feel the slippers on your feet, but the elastic cuts across your instep and hurts. You sweat like crazy but cannot get to the shower yourself, have to rely on someone else, then get petrified that you will fall. You don't know if it is hot or cold weather, you are sweating but your feet are ice cold. Your hair stands on end from always lying on the pillow, but you can't wash it yourself. The hair on your legs gets long and ugly and you cannot shave. When you want to sit or get up, you lie there preparing yourself to make the effort, but you keep putting it off because you know it is going to hurt.
DAY 17. I woke feeling much better and decided to change my attitude and work at getting better, no matter what. I was determined to keep trying to walk with walker - I got a little more confident each time although I was not truly walking, I could move my legs from the knees downwards, but could not take my weight onto my legs, had to lean on my arms. I worked hard at my physio exercises, and kept moving any muscle, anywhere, that would and could move, as if I could force them not to get worse, but better!! My hands were still burning and touching anything remained a torture.
DAY 18. I had Physio with a new lady -worked hard felt a bit exhausted then had visitors. Visitors were difficult to handle - first of all it was tiring to talk, then because this is such a rare disease, I had to explain in detail what it was all about, and when I did so, it was as if I was living through the last 18 days all over again. Then they would get this look of horror on their faces, and while I couldn't even give myself any hope, it almost seemed as if they wanted ME to reassure THEM!!! If I took a phone call, the first thing someone would tell me was "Oh, I know someone who had that and they still can't walk, or it took them 2 years to get better, or they lay in ICU for 6 months" etc etc. I was not up to listening to these horror stories, because I was still at the stage where we didn't know whether I was going to improve or deteriorate to that same horrible state. People just opened their mouths and put their feet right in. It was not reassuring to hear that there are worse cases, or that it could have been worse, or "I know how you feel". All wrong things to say. So I decided that I didn't want to see any visitors and would not take phone calls. I had a fight on my hands and needed to direct my strength to that. While I was determined that I would get better and could not even entertain any ideas to the contrary, I was also still very vulnerable to the idea that I may not get better. Visitors made me feel even more exhausted - I got tired of telling the story - it only made me re-live the experience. The things that the visitors said to me got to me and when the Psychologist came by I broke down. She said, this was the depression taking over from the logic. She said maybe no visitors for a while. So I asked my family to tell everyone, thank you, but no visitors and no calls. Meantime, I had been using the walker all day to the toilet and back with no more falls - so far so good.
The Improvement stage
DAY 19. I felt tired and weak on waking - but my toes had a new sensation - not numb or tingly - but like grains of sand rubbing between my toes. Dr B said this was a good sign, but he would only be impressed if I reported an improvement in my motor functions. My hands were still excruciating. The Physio did a shorter session then made me walk down the passage, with the walker, of course. All was fine until she said to try walking without thinking - and the minute I did not focus on putting one foot in front of the other, my legs just collapsed underneath me. I was also now having feelings of pain shooting down legs - again my family came and gave me a massage, which was greatly soothing. I hoped that these sensory signs are indications that the turnaround has arrived. I kept trying to focus on improvement, but my mood varied between determination and despair.
DAY 20. We had a bad night in the ward - two epileptic patients kept the nurses running up and down - they kept promising they would come to shower me, but didn't get there - in the end I struggled to the wash basin, could not open the hot tap, so had a cold wipe and crawled into bed. I woke early in the morning so did not get much sleep. I now felt a new determination to try all my exercises, then got into the chair to try and crochet - I was concerned that my fingers would permanently lock into a curled position, so asked my daughter to bring my crochet hook and some wool. But my fingers were just so painful and shaky and I could not guide the hook where I want it, so I gave that up. I tried to read a book, but my right eye was still blurry, so that was no good. My feet were still the same, not much progress since yesterday. I was still worried, although Dr B felt that I had stabilised and it was only a matter of waiting for improvements. Patience, he said. Later in the day I felt that my overall skin was not so numb, but I had a bad attack on my hands and fingers. Later I sat in the chair again with feet up on the other chair and did all sort of muscle clenching exercises for my legs and arms. I possibly over tired myself because, as the day progressed, I felt weaker and afraid to try my walk to the toilet alone. When they took me to the shower, my knees wanted to buckle under me again, so my confidence was waning again. After my session with the psychologist the other day, I had told her that I desperately needed to do something to help me get better, I had always been a "doer" so she had asked me what did I think I could do. I asked her to draw me a picture of what the nerves and nerve sheaths looked like, and how the myelin had been stripped off. I then started doing visualisations of seeing the myelin growing back, layer by layer, bit by bit, and I also made up a chant, which I kept on singing to myself, to the tune of Tom Jones' "Delilah" "My.My.My. oh Myelin, growing back bit by bit till I'm whole again". So I used these two techniques to try and get my mind to assist with the healing process.
DAY 21. Three weeks of Hell. I still felt very weak and not confident after my fall, so I was asking the staff to stand by me when I went to the toilet, if I fell again, it would take a real effort to build up my confidence again. The Physio visited and when we did the exercises said she thought I was 30% stronger since she had seen me three days before. This was really encouraging and I started to do maths, 30 % in three days, that means 100 % better in about ten days!!! Unfortunately, it does not work that way!!!. I was still very afraid to walk with the walker, but she said to try, she would have the wheel chair right behind me. I walked only about 10 metres, but was very tired, broke out in a sweat and my top half kind of collapsed over the walker, so we stopped. She said it was also because it was very hot and muscles are generally weaker in the heat. I rested for most of the afternoon. My mood was high and I really began to believe that I would continue improving.
DAY 22. I woke really tired, blood pressure was low, and I had no energy. I did my exercises though on my own, but when the physio came I said I was really too tired to try again. Everything was a frustration - everything was an effort - just getting to a sitting position, never mind hobbling to the loo, sitting up to eat, getting a glass of water - everything was painful and difficult to do. I later got into the chair and watched Prison Break and played Sudoku on the lap top. My fingers were still giving me hell. I did three sets of exercises through the day. Thank goodness they gave me the remote for the air-con, now I didn't have to sweat like a pig all day. I felt slightly stronger when they showered me - I was totally wobbly in my trunk and could not easily keep myself upright and I don't think these ladies who helped me shower realised the extent of my lameness - it was petrifying to be parked on the chair commode with no sides and no back rest and be pushed down the passage, if they were to stop suddenly or swerve for someone coming down the passage, I would go flying. Then somehow I had to be manoeuvred onto the plastic chair that is mounted on the wall, again with no sides, then be sprayed with the hand shower, given the soap and washrag that you can’t even feel in your hand and be expected to wash yourself - you can't even keep upright. Then you get sprayed again to rinse off - I jokingly called this the "Car Wash", but it was no joke!! Anyway each time I showered it got a little easier. I got back to bed and the itching on my back was terrible - I eventually asked the Sister if she could rub a bit of Arnica onto my back. I hated to ask them to do more than they already have to, but it really helped. Eventually the itching eased off. I had a episode of feeling very down - I had been pushing myself with will power to do all I possibly could, family came and everyone kept saying how much stronger I was and would still get, and yet I still felt so weak and wondered if I would ever recover. I felt too tired to try and keep up a positive frame of mind. I eventually took the sleeping pill just to obliterate my thoughts.
DAY 23. I again woke very tired. I had noted when they took my vital signs, that my blood pressure was fluctuating quite a lot, another symptom of GBS. In the mornings, the pressure was very low and I suppose this was why I had no energy. I forced myself to sit up, take tablets, drink tea, eat the fish cake for breakfast which was very dry, so I didn't eat much. I forced myself to get up and actually almost got up just using my butt muscles instead of pulling up with my arms. I went to the loo and told myself to pull myself together, got the razor, went back to the bed and, using a wet wipe for moisture, shaved my legs. What a great sense of achievement and relief - I couldn't stand to see the ugly hairs growing like they did. This is one of the distressing things, your personal hygiene takes a dive as you can't attend to things like shaving, clipping nails, and your hair stands on end because you are lying down all day. You feel dirty and unkempt and can do little to sort yourself out. I set myself up with the laptop to update my journal, but my fingers couldn't feel anything and they kept touching keys they shouldn't and I got Capitals when I didn't mean to, jumped to columns I didn't want, had constant typing errors, then I had to go back and correct. Immensely frustrating. My physio came by and brought me yet another of her junior students to do my physio. I was really angry as I had now been "treated" by 4 different physio's under Ann and each one of them was doing different things and working different parts of my body and telling me to do different exercises. What was the point of doing an exercise today to strengthen a muscle, and then never doing it again?? A different exercise tomorrow? I could not see if I was improving or not with that approach. I needed to have a standard by which to judge, and I could not set a standard if I was being treated differently by each person who she sent. I complained to the doctor and asked if I could PLEASE have the same physiotherapist for a few days in sequence at least, so that I could work at something logically, not just random. Again I felt cynical, the "senior" therapist was obviously sending me her juniors, who probably got paid peanuts, while she was charging top rates for attending to me. Overall, I was not impressed with the physio I got at the hospital. Anyway in spite of this, I thought I could detect a strengthening each day, although I was still scared of walking far. I also did not go to shower that day, it stressed me out, as much as I wanted to get clean. I was always pretty shaken up by the time I got back from showering. But this day had been cool and I had the air con on, so didn't sweat so much. I used the Wet Wipes to freshen up. I also found that when I had a "pain attack" my other senses seemed to be ultra-sensitive, especially my hearing, as I had experienced at the other hospital, even ordinary noises seemed thunderous. Two of the epileptic patients decided to have a conversation at about 10 pm and it sounded as if they were in my room shouting at each other, so I asked the nurse if I could have the door shut. I was finding that my mind was also ultra active and the only way to switch it off was to take the sleeping tablet and go to sleep
.
DAY 24. I was not so tired when waking. Alison (new physio) came, and took me down the passage to walk - I was now a bit more confident. She took me through some exercises, then put me in the wheelchair to go out in the garden. Dr B was now confident that I was on the road to improvement and began to talk about the next step - maybe I could go to a Rehabilitation centre to strengthen further, or, if I had the support system at home, I could even go home. I was feeling much stronger and began to think about going home in a day or two. I needed to know that my support system was in place, though. My husband has never been very domesticated and is not normally a person who has been able to care for others, so I was uneasy about this. I had a bad pain session around 4 pm, and thought it might have something to do with constipation, so I asked for laxative. This was the first time in my life that I have been constipated, which shows that the GBS affects even the bowel muscles. After an hour I had even more pain, a really bad one this time, pains in tummy, back and also little stabbing pains all over. Eventually a pain killer took effect and I went to the "Car Wash" to shower. Back in bed, I tried to relax, watched the Dakar on TV, then took a sleeping pill to sleep. I began to think that will power is all that kept me going - I kept telling myself that I would improve, but there seemed very little evidence of that at the time.
DAY 25. Alison came again, took me walking a little further down the passage. I did some more exercises, she was also using a pressure technique on my hands that she said may help the nerves to remember what they have to do. Because I was having a huge amount of sensitivity in my fingertips, maybe this meant the feeling was coming back. The laxative finally worked and I felt much better. I seem to be getting stronger more quickly now. My family were busy getting things ready at home for me to come back. It was strange to have them running around organising, as I had always been the one in the family to do that kind of thing. Being helpless really turns things around in your life and those close to you!!! I had a bad pain attack at 3 pm, but not so prolonged. I was really feeling stronger, still wobbly, but coming right. When I was "up" I reckoned I might even walk out of there on Sunday. My fingers were terribly painful, I really battled to type, and even the feeling of the sheets against my hands was a nightmare.
DAY 26. My hands seemed more tender than ever, but I told myself this was because the feeling was coming back. I was visited by yet another physio - being a Saturday, I suppose Ann could not find any of her juniors to send!!! Anyway, this one did some new exercises for my trunk area and also put pressure on my hands. I was feeling stronger and more confident about coping at home, my husband was adamant that he could look after me, but I was worried about the strain on him. I had a last minute panic attack about this and my poor daughter rushed over to reassure me. In the hospital you have a security blanket as you know that the facilities are geared up for invalids, high beds, chairs, special toilets and shower facilities. Now you have to face trying to cope at home, which is not always invalid friendly.
DAY 27. The BIG DAY - going home!!! I had to wait until Dr B did his rounds - he asked if I still felt O.K. about going home and did I think I was still getting stronger. I gave him a shaky "yes" to both questions. Got home around 1pm - I was really uncomfortable sitting in the car upright - felt as if my body was collapsing on itself - I suppose the trunk muscles were still very weak. But I really enjoyed the sensation of movement, as the car sped along the highway. I could not get up the step into the house without help, but was managing to get about a little in the walker. My daughter had arranged a raised toilet seat, but she had not yet brought it to the house. After two hours at home, I really needed the loo and I had no option but to get down on the ordinary seat, with my husband's help. But when it came time for me to get up, even with my husband's help, we could not do it. I sat there thinking, well so be it, here I sit for the rest of my life!!!. But we improvised by putting a chair next to the toilet and I levered myself up using this and the toilet roll holder to lean on. I managed to unpack my suitcase, but this was very uncomfortable as my body did not want to hold me up. I had a small pain attack around 7 pm, so lay down - I could not sit for long, even in the Lazy Boy recliner. When I got up we had to figure out how to wash - my husband brought a basin of warm water and put it next to me on the chair while I sat on the toilet - (the raised seat had arrived). Then I could wash, wipe off, dry and dress myself. Having to sleep with my husband in the same bed for the first time in nearly four weeks, and with the pain I was experiencing was a bit of a challenge. Every time he moved, I was in agony, and he does tend to be a restless sleeper. But he was very good and tried his best to keep to his side of the bed. If it was really a problem, I would get up with the walker and hobble to the recliner and try to sleep there for a while. I was still having regular pain attacks which were sometimes so painful I could not help moaning, which again disturbed him.
DAY 28. I woke up feeling exhausted after the bad night, but was feeling a little stronger by 9 am. My husband had to attend to a few things at work, before he took some time off to help me, so my teenage grand daughter came to spend the day with me. Luckily it was school holidays. I unpacked some clothes into the wardrobe, trunk feeling a little stronger. Back to the recliner for a while, then had to get horizontal again. Being upright for any length of time, caused me a lot of pain in my trunk area. There seemed to be a little progress when I did my exercises. Some feeling seemed to be coming back into my palms, but I had unbelievable pain in my fingers now - I was typing my journal with much difficulty, using my thumbnails sideways as the fingertips were too sore to use. I was beginning to be so frustrated at home, everywhere I looked, something needed doing and I couldn't do it. To my standards, the house was filthy, the waste bin in the kitchen was full of maggots, I could not see what food stock there was in the cupboards or freezers. My ultra sensitive senses told me that the sheets on bed smelt and needed changing, the shower was dirty and the garden needed weeding. All these things I had always done without help from anyone, and now they all lay undone, and I could do nothing. I had to keep asking my husband to do things and also how to do them, and I hated it. He was doing his best but had also been thrown into the deep end.
DAY 29. I had a fairly good night, waking to a Pain attack at 7 am. This day my teenage grandson came to help. At 1 pm I started feeling shaky, not a pain attack as such, but a lot of tingling and stabbing pains in the hands. I was so sensitive all over that I could actually feel the blood pulsing down the vein from the jugular - not a pulse but I could feel the blood moving through the vein. Sounds unreal but that is how it was. I was still typing with my thumbnails - my hands were proving to be a real handicap for me - the lameness I could work on with exercises. But I supposed this burning sensation and more feeling in the palms was a good sign. Felt a bit disheartened today, but managed to save this journal onto a stiffy and then save onto my PC. So now I could return the borrowed laptop, and the mouse was easier to handle than tapping the pad with my agonising fingers. Sitting at the PC though, was hard, my trunk was still so weak, I kept feeling I was falling over and keeping upright was tiring and painful. I managed to prop myself up with pillows and supported myself with my elbows on the desk.
DAY 30. I woke at 4 am couldn't sleep further, went to sit at the PC and leaning the chair back, managed to update my journal and check e mails. Then I managed to make my own cereal and yoghurt for breakfast. Walking was better. My daughter found a Physio for me who would came to the house for my treatments and she arrived at 4 pm. Took me through an assessment, then gave me exercises that would strengthen the muscles I needed to become more functional - said at least if I can help myself to the loo, do a bit in the kitchen, and maybe even shower, that gets me going and we could progress to the other muscles later. I was exhausted by the exercises, then after supper had another episode of the rushing feeling to my hands and feet, then all over, felt quite faint and thought I was having a heart attack or something. Now I think it is just part of the healing and a panic attack combined
DAY 31. I woke at 1 am with my tummy needing to go, at least it seems to be working without laxatives again, then managed to sleep on and off until 6.30 am. I felt very weak until 8 am, then got up made breakfast and started to perk up. At 10 am I managed to wash my hair at the sink, then blow dry. Felt much better. Did some exercises. I managed to get onto the bathroom scale and discovered that I had lost 5 kgs in three weeks. One bonus of this illness!! Went to the PC at 2.30 pm, put on some music then lay on the bed there. Seeing as I had not allowed visitors or phone calls at the hospital, I felt I needed to let all my friends know how I was, and felt much more able to communicate with them now that I had some positive news to give them, so I sent an e mail to everyone giving them a progress report. I did ask them though, not to flood me with e mails, as I still found it very tiring to sit at the PC.
DAY 32. I only slept until 2 am - not much afterwards and felt very weak until about 9 am. When I got up and shuffled to the kitchen with my walker, without thinking I lifted the walker to get over the rug and saw that I could take a few steps without the walker. What elation!! A friend came to keep me company while my husband went to the shops, they were still very afraid of leaving me on my own. The shopping was also a new experience for my husband, luckily I had a good stock of most things before I took ill, and he had not had to do much shopping until now, but now we were starting to run short and he just had to do it. Quite nerve wracking for him, but he managed!!! I faithfully did my exercises and, now that I knew I could do it, walked up and down a lot. My whole family with babies and all came to visit, which was nice, but I felt stressed that I could not pick the little ones up. And the noise and commotion got to me after a while, I had been used to such peace and quiet at the hospital. When they left at eight I had a bad headache and was feeling very jumpy. But I washed, took painkillers and sleeping tablet and went to bed.
DAY 33. I slept well, got up and felt strong - helped my husband clean the house - even vacuumed the bedroom myself. My fingers were terribly tingly, but the trunk area seemed to be feeling stronger - now that I had discovered that I could walk by myself, I tried longer and longer distance, with the walker always at hand. I had a fairly good day, but went to rest at 5 pm so I would be strong when my daughter and her man came over for a Braai (BBQ), but then I had one of those "over stimulation" episodes. There was a fly buzzing round the room which sounded like a helicopter, I swear I could hear the neighbour at the back whistling and kids playing in the playground across the canal - really bizarre, couldn't even take the sound of the TV through the closed door. Later I felt better and got up to eat washed and went to bed - sleeping tablet again.
DAY 34. I woke feeling very lethargic, took until about 10 am before I had energy. Being Sunday, I had a lot of visitors, the neighbours and friends all arrived. The neighbour had a friend from France visiting them whose brother had this syndrome last year, badly it seems, he was found totally paralysed on his bathroom floor, and he also had a lung problem, so was on a ventilator. He spent one month in hospital then another two months at a re-hab - now better. So I am indeed lucky, although any form of this disease is terrible to endure. I was rather tired after all the visitors, so spent the afternoon in bed. At 5 pm, my husband put a plastic garden chair in the shower cubicle, helped me in and out, so - wonderful, I had a shower again. I found I could lift my legs higher, although my trunk area felt really tired by the end of the day. I decided to try and reduce the sleeping tablets, so I only took a half tablet. But I ended up not asleep by 11 pm, so I took other half.
DAY 35. I woke feeling strong - walked all over by myself, made breakfast etc. I was so keen to show the Physio when she came that I could walk on my own, but she didn't seem impressed, told me I was waddling from side to side, not doing the heel toe type of walking!!! She gave me some other exercises, I was pouring with sweat when finished. I was thrilled with what I could do, but the Physio doesn't seem impressed, I got quite discouraged after her visit, as I realised how much I could not yet do. Realising what you cannot do is disheartening, but you need to focus on how much you can do, or how much you have improved. I felt I really needed to get out of the house, I had been indoors basically for a month, so my husband took me to the beach for a ride and ice cream. After the icecream, did not feel like food, but decided to make my own salad. My hands gave me hell. I just got fed up with everything and went to lie down at 7 pm, had a terrible tingly attack in my hands and feet - I eventually had to ask my husband to give them a rub. The skin on my scalp was now feeling tender, my head was sore from all the lying down, or sitting back. Maybe the skin on my scalp had also been a bit dead and was now coming alive. I hoped so, I kept looking for signs of improvement, it is the only hope that kept me going and bearing this pain when I felt I could not take it much longer.
DAY 36. I felt a bit tired this morning, but decided to walk up and down 20 times on the hour every hour to build up my stamina. I also did exercises, concentrating on doing marching actions lifting my knees up high when I walked, this was good for strengthening my truck muscles. And I changed the loose covers on the recliners although it was hell for the hands. I was finding I could do more and more of the household chores, although I got tired quickly and had to rest often. My husband was planning to go back to work the next week, so it was a good thing I was starting to cope at home again. I could even prepare myself a small meal without too much pain.
DAY 37. My back and middle were very sore today, maybe I was tired from trying to walk upright - I had been walking stooped over, as my truck area was still very weak. I still did the walking every hour and spent quite a while at the PC updating my current accounts and payments. My hands still torturous, but I made myself fold clothes and wash up two dishcloths - the physio said this might help--- but nothing did, I'm afraid. The physio had also said I must try and play with children's Play Dough to get my hands working and de-sensitised, so my daughter brought me some. It was really painful to push and pull, but I resolved to try everyday. I was now able to get into the shower cubicle by myself with the support of the plastic chair, and only needed assistance stepping out over the step. I was now getting a lot of stabbing pains in the hands and feet and also tummy, I tried to sit it out, but my husband insisted I took pain tablets before they got worse. I really wanted to try and eliminate the sleeping and pain pills, but I supposed there was no need to suffer unnecessarily at this stage. The only time I had respite from the pain and discomfort was when I was sleeping, so was still taking a sleeping pill each night, something which I had never done in my life.
DAY 38. By now I was waking up with much more energy and was doing more and more housework, walking and exercising. I started going down the two steps into the garden, with support of the walker, and then walking round and round on the lawn. The physio said it would help my co-ordination if I could walk on an uneven surface. For the first time since I got home, I felt I did not want to go to bed early, I even sat up late and watched a movie.
DAY 39. I was now walking all over without the walker and generally being much more physically active for longer periods. The hands were still a problem, I would wake each morning and hope they would be better, only to feel that awful sensation as I pulled at the sheets. My usual night time routine of putting on deodorant after showering, putting cream on my face, was a torture, as my hands felt so terrible while I was doing it. I did not have pain killers all day and slept with half sleeping tablet.
DAY 40. I woke quite energetic, walking back and forth now without walker and trying steps - with walker - much better. We had friends who were coming to sleep over, so I just did one set of exercises as I knew would be tired out by their visit. I went to lie down about 8.30 pm as my middle was very tired and sore. Took pain killers. Slept at about 10.30pm with half sleeping tablet.
DAY 41. February already, I felt I had lost January. I was now walking regularly outside round and round the lawn, this was better than walking in the house, as it was important to keep up the motion and not stop to turn around after only a few steps. Fingers and toes were still dreadful, didn't know when they would ever normalise. The physio is concentrating on my recovery skills, when you lose your balance, it is your trunk muscles which pull you upright, and also with GBS there may be a measure of lack of co-ordination. So she "knocked me about" Like a wobbly toy, which you knock over and it rocks back to it's upright position. When she pushed me I had to recover. And she did the pushing randomly, so I never knew if she was going to push me backwards, forwards or sideways. At first she pushed me while sitting, then kneeling, then standing and eventually walking. Quite scary. I could now help myself in and out of shower, and could manage steps up - down a steep one was still dicey.
DAY 42. Every day I was a bit stronger, but wished it would hurry up though.
DAY 43. This day I decided to go with my husband to the supermarket. So we packed in the walker and set off. It was funny being able to use the Invalid parking, but decided that we qualified!!! I managed to walk fairly easily and quickly, but was constantly aware of people coming too close in case they bumped me. People were very kind when they saw us coming down the row, they inevitably stopped and gave us a good space to get past. Back home, I even managed to help unpack the groceries into the cupboard, then went to rest. Later I did my exercises and felt so energised, that I decided I would cook the evening meal. I still found myself very weak in the trunk area, I could hold my body upright for a fair amount of time, but picking up any extra weight, like a pot or the kettle, was a bit of a strain. The hands and feet seemed to be having areas that were more alive, but the sensitive parts were still a nightmare. I managed to sleep fairly well with one third sleeping tablet. No pain pills.
DAY 44. The next morning I felt a bit tired and was very sore in my waist area, maybe I had done too much the day before, or picked up something a bit heavy?? My husband went back to work, so this was my first day alone at home. I managed to vacuum the bedroom and scrub some dirty marks off the carpet, although getting down on my hands and knees and up again was really a struggle. I was trying to do a bit, then rest for half an hour, then maybe the middle part of me wouldn't get so sore. In the evening my grandson came home with some badges that needed sewing onto his school jacket, but my fingers were just not up to it. I was quite upset by this, as I had always done these things for him. By the end of the day I was feeling exhausted. I had reduced my sleeping tablets to one third and seemed to be managing with this.
DAY 45. I had now progressed to the stage where I was walking everywhere without the walker, but kept it close at hand when using steps. I now found that I could manage the steps down into the garden without the walker and I could also get into and out of the shower cubicle without help. The hands and feet were still driving me mad - now coming back to life, they were really painful and tingly to use. It seemed that more areas in the hands were getting feeling back, but the areas remaining were terribly painful.
DAY 46. I found that some days I had energy and some days not. This was a "not" day. Perhaps because it was a really hot day. But I managed to do a bit of one Line Dance called Enchantment!! Slow one, but managed. The Physio was still visiting me every third day now and challenged me every time by giving me new and extended exercises to do, when all I wanted to do was show her the old ones so she could see how well I was doing!!! I also seemed to be coping with the cut back in sleeping pill - no problems sleeping.
DAY 47. Very Very hot this day - I couldn't raise the energy to do much - swept a bit, but it was very hot and muggy - we had a bit of a thunderstorm at about 6.30 pm. When my grandson came over in the afternoon, I decided to try and do a walk around the block - with him close by on his bicycle. I managed fine, but I felt quite wobbly and felt that if I were to catch my foot on uneven ground, I would certainly go crashing down and then I definitely wouldn't be able to get up again!!! But all went well. My trunk and hands were still very sore.
DAY 48. I felt that this improvement process seemed endless and realised that I had been thinking that my life would go on normally as soon as all my symptoms were gone. But I decided that I don't want to wait for that, my life must go back to normal in spite of the symptoms I still had. I had to get on with life - if I was to have sore hands and middle forever, I would have to adjust and carry on, must try and cope around that pain. So I went for another walk around the block, then helped my husband to do some weeding in the front garden.
DAY 49. I slept well, felt somewhat stronger, but still had to rest it if I was doing anything like sweeping, mopping etc. Work for 10 minutes, rest for 5 mins, but get it all done eventually. Fingers seeming to be less sensitive in area, if not intensity. Think I overdid it a bit lifting the vacuum cleaner, as my back and middle were very sore at the end of the day and I had a bad episode of burning hands and feet.
DAY 50. Now that walking round the block was becoming a part of the daily routine, I decided to walk further, and went around the next block. My neighbour saw me coming home and was so thrilled to see me on my feet that he hugged me and lifted me clean off my feet!!! I found that I could sit for longer periods upright, so set myself down in front of the PC and started writing another article for insertion into our 4 X 4 Club magazine. I had been writing a series of articles about our various trips into Africa, and fortunately, had done quite a few in advance before I got ill, but it was now time to make up for lost time, so to speak. Later I stayed up longer than usual to watch my favourite TV program, but felt really frustrated with the constant pain and discomfort - when would it ever end? But every day was still a little better than the day before, it just seemed to have lasted forever.
DAY 51. This day, on the way back from the shops, I asked my husband to pull over and let me try driving. I felt that my limbs were strong enough, but the Physio had been reluctant to let me drive, as she said my co-ordination may still be not right and I may not react in time to potential problems. But all went well, although I only drove about 5 blocks. I was finding that I was fine during the day, but by 7 pm. I was bored with watching TV, tired of the constant pain and just generally feeling fed up. Sleeping was the only relief I got from the discomfort, but I didn't want to go to bed too early, as I then woke up in the early hours and couldn't go back to sleep.
DAY 52. I had asked my husband to go to my Gym with my membership card to explain what had happened and to ask if they would extend my contract to make up for the time I had been unable to use the Gym. They were very happy to do this and therefore had suspended my card until the end of the month - 2 weeks away. This day was very hot - 33 degrees and I had managed to bake a batch of cheese straws - it was very nice and I did not get too tired. After a bit of a rest, I decided I really would like to go to the Gym and try having a swim in the indoor pool. Again, my physio had been reluctant a couple of weeks back when I said I thought swimming would be good therapy for me, she was afraid I might drown!!! But I drove myself to the Gym and managed well. I had been afraid of negotiating the steps, but found that I could manage gripping tight onto the rails for support, particularly getting out, when the weight of my body rose above water level. I did all sorts of movements that I thought would help strengthen the stomach and back area. I found that the sensation of the water over my hands and feet was uncomfortable, not painful as such, but very unpleasant.
DAY 53. A milestone - today we took the walker back to the hospital. I felt so proud walking in there and giving it back, but of course, nobody knew me and what state I had been when I left, so the only ones to appreciate the moment was us!!!! Then we went to my son's house to visit. It was sad not to be able to play with my little granddaughter, she was so used to her Granny taking her to the swings, getting down on the floor to play with toys, making sand castles in the sand pit. And holding the 5 month old baby was difficult with my stupid sensitive hands and weak trunk muscles, but I realised that it was only for now, it was bound to improve. I had a bad pain episode in the evening, didn't want even to shower as my hands were too sore.
DAY 54. I managed to persuade my husband to get a labourer to help cut down the trees in the garden, so I was quite active - back and forth helping and showing the guy what I wanted him to do, so my back muscles were quite sore by the end of the day. But, for the first time when I showered, when I lifted the towel over my shoulders to dry my back, I felt as if my trunk muscles were supporting me. Better than before, anyway.
DAY 55. I felt a bit sore and tired after yesterday, but I suppose that was to be expected. I felt a small improvement in trunk, hands and feet- but still got fed up by the end of the day. But joy oh joy, I managed to get into the bath - it was lovely to soak in the warm water and rest tired muscles. I first did a "dry run" - literally, put a chair next to the bath and got in with my clothes still on, and then out again, just to make sure I had the strength. I did not want to get in there and, with a wet, slippery body, not be able to get out again!!!! I reminded myself that only 4 weeks ago, I had to sit on the raised toilet seat and feebly wash myself with a cloth and bowl - progress had been made, although I was wishing it was quicker now - the hands in particular and the soreness in the middle were exhausting.
From this time on the days were pretty much the same with small improvements in strength and improvements in the sensations in my hands and feet. Highlights were my return to Line Dancing classes exactly three months after my first symptoms, as well as the return to my regular Pilates, Thai Chi and Aqua Aerobics classes. I had good days and bad days, one bad day was when my son celebrated his 40th birthday and also his son's christening on the same day - I was able to walk into the church and into his house and garden, but with the large crowd there, I found it difficult moving between people, I was still so wobbly and afraid that if someone made a sudden movement, I would go crashing to the floor!!. It also depressed me psychologically, as these kind of gatherings in the past had been when I moved around a lot greeting everybody, then taking the kids to push on the swings, or picking them up and playing etc. Now I had to sit like an old lady on a chair on the sidelines. So I had a little weeping session when I got home, cried myself out and was soon over my morbid thoughts!! We resumed some of our social life, going to friends, but I still found sitting upright for long periods painful and had to get "horizontal" after a couple of hours to rest, but this also gradually improved. As the numbness started to recede in my hands and feet, I began to experience a feeling as if red ants were biting me. Most unpleasant, but I took it as a sign that this was the nerves growing back again and making contact again. It was a joy to be able to use a pen to write again and I began again with my knitting and crocheting, albeit slowly and for short periods to begin with. In fact, it was joy to do anything that I previously had taken for granted. I realised that being "normal" was so fantastic, people who have GBS would give anything just to be normal again!!!! I am so thankful that I have recovered to this point, I still have a way to go, but realise that I am lucky to have come off fairly lightly. I think of other GBS sufferers who had it much worse than I, and can only say to them - keep going, do anything you can to strengthen yourself, and believe in your recovery. Most of us will recover to a normal, or near normal life, so persevere.
DAY 230
Once the healing process began, it seemed logical that the improvement would continue in a steady manner, but this does not seem to be the case. Every few weeks, I seem to have a “flare up” of the numbness in my hands and feet and a strange feeling in my waist area, as if I have eaten too much – a fullness. The feelings seem to spread and I worry that the GBS is making a comeback. Then the numbness recedes again, but only to the point where it was before – not better. Or, if it is better, so slightly that I can’t tell. Thank goodness, the motor nerves don’t seem to be affected, as I can still do all the things like dancing, Pilates etc. I may be a little wobbly and not as strong as I used to me, but only to a small degree. I suppose I may have to live with strange sensations for a long time to come, maybe the rest of my life, who knows.
Christmas 2010.12.24
Two years on and I am pretty much the same as the last paragraph above. So it seems that I will always have some degree of weakness and sensation problems in my hands and feet. “Flare ups” continue and I can’t link them up to any particular reason, they come and go as they will. There are still days when I have normal energy and days that I feel tired. There is still a feeling of worry deep down, when I have these flare ups, that the GBS will come back, but so far so good. A terrible disease, a horrible experience I wouldn’t wish on anyone. But I can live normally, for which I am eternally grateful, so I make sure I make the most of every minute of the “normal” life I have.
Marion is from Cape Town South Africa and a liaison for the International GBS foundation. If you would like to get in touch with her, feel free to message me at justinesgbsjourney@gmail.com