For me 2020 is a crazy year. Not because of the corona crisis, but because of the autoimmune disease Guillain-Barré syndrome (GBS), which was diagnosed in March this year. This blog article is (exceptionally) not about technology, but I would like to report about a personal disease course and how it feels to be bedridden for two months. At the same time I would like to encourage those affected and their relatives who are confronted with a GBS diagnosis themselves or within their loved ones.
Tingling sensations, unfortunately not in the stomach.
March 2020: The corona pandemic begins and I am right in the middle of it. Avoiding contact with other people, doing home office, staying at home, the real dream of every tech nerd (I’m just kidding) should finally come true. Despite the pandemic, I continued my evening running sessions. One evening after running I realized that something was wrong with my feet. I have a strange tingling sensation on tiptoe that won’t go away even in the evening on the sofa. As an amateur medical doctor I google the symptoms of course, knowing that in the end cancer will come out anyway. No matter. It can’t be that bad, I think. The best thing is to sleep on it for a night, then it will definitely get better.
The next day, this strange feeling is still there, and even worse, it stretches along the soles of the feet and up the legs. Still the tingling, now numbness is added. In the evening I notice that this strange tingling spreads all the way to the ankle. The fingers are also affected, first the little one, then the ring finger, then the palms. “Very well”, I think to myself, “sleep on it, maybe it will get better the next morning”. When lying down, the tingling sensation becomes so uncomfortable that I can hardly feel the blanket on my toes. I can hardly close my eyes and feel that I am slowly losing control over my body.
The morning after, I contact my family doctor and get an appointment the same day. I drive 20 minutes to Hamburg Langenhorn, climb the small steps at the entrance door to the practice and am a little out of breath. At the doctor’s appointment she examines me, I report my symptoms, she examines me and comes to the conclusion that it might be an acute neurological emergency. “You’d better go to hospital,” she advises me and prepares the referral. I am both happy and worried, on the one hand because the matter is being investigated and on the other hand because of the seriousness of the situation, which I do not know. I follow the advice of my doctor and drive to the Asklepios Klinik Nord in Langenhorn, Hamburg, but before that I go home and pack my things for the next few days.
At home I stuff everything necessary into my backpack, ready for a weekend stay in hospital. On the way there I realize that after a short distance on foot I feel exhausted and tired. A 26 year old, heavy legs, wobbly on his knees, out of breath after a few hundred meters.
In a search for the reasons.
Admitted to the hospital, the first diagnoses quickly follow. Blood withdrawal. ECG. An electronic examination of the nerve fiber conductivity. This is followed by a lumbar puncture in which nerve fluid is taken from the back at the level of the loin. Reflex examinations and MRI. I am very grateful to the doctors, because they are working hard to find a cause for my symptoms. After a short time there is a first diagnosis. Everything is pointing to the “Guillain Barré syndrome”, the doctors attest. “That doesn’t sound so bad at first”, I think to myself and am glad that the whole thing can finally be called by name.
The syndrome, named after two French doctors who first wrote down the symptoms in 1916, is a neurological disease based on the demyelination of nerve fibers, I am told. The nerve cells lose their insulating layer, comparable to a power cable, which causes the nerve cell to lose its function to transmit information. This loss is manifested by muscle weakness in the hands and feet, which then rises. The cause has not been clarified, but a peak of the disease is recognizable around the age of 25 and 60. An autoimmune reaction and neuroallergic reactions to previous infections are suspected, but there is no clear evidence.
In Germany, about 1500 people a year suffer from this rare nervous disease. There are different forms of the disease, ranging from slight weakness to complete paralysis, although those affected are still fully conscious. The neck and chest muscles can also fail, which can affect the ability to breathe and swallow.
I would have preferred to win the lottery. “The prognosis for your illness is good, but you must be prepared for a longer stay. The symptoms may worsen and recovery may take weeks, months or even years,” the doctors explain to me. A diagnosis I had not expected.
My body is attacking itself.
Shortly after the diagnosis I receive so-called immunoglobulins for five days, antibodies that are supposed to prevent my misdirected immune system from continuing to attack my own nerve system. Nevertheless I notice how I feel weaker every day. On the first day of the treatment I notice that I find it difficult to walk out of my bed and into the bathroom. When I take a shower, I hardly get my arms raised. After a few meters I am exhausted like after a jogging session. The next day I can hardly walk freely through the room and have to hold on to the walls to avoid falling down. I feel my strength dwindling and am hardly able to hold my spoon and fork during dinner. In the morning I can no longer manage to eat breakfast on my own, I can’t even lift a sandwich. Within a very short time I can no longer get out of bed, I can’t even sit on the edge of the bed under my own power. My eyes no longer close, my lips become stiff and I lose my sense of taste. My fingers collapse and I lack the strength to turn myself in bed and move the blanket or pillow even a centimeter.
Within a few days I am a prisoner in my own body. I have lost control of the most important muscles. All that remains for me to move is my head, which I can move back and forth a little and my arms, which I can lift a few centimeters from the bed sheet. Things that were previously taken for granted are now a thing of the impossible. My head works, I get a little panic. Panic, because I did not expect this development. The nurses take loving care of me. Physiotherapists move my limbs, stretch my feet and hands. They fight my neck and back pain caused by lying down for so long.
Because the treatment is not working, I am transferred to the stroke unit in Hamburg, Barmbek for further therapy. I receive a so-called plasmapheresis or blood washing over 14 days with 6 sessions. This is an attempt to filter out the harmful antibodies from my blood. The doctors come daily and ask about my condition.
Time passes very slowly. Especially on weekends and holidays when no treatments and rounds are performed. During the Corona crisis, patient visits to the hospital are prohibited, so my family and friends cannot visit me. There is no television in the room. I am learning to appreciate the little things in life and am happy every time someone enters the room and talks to me, even if only for a few minutes. I’m too weak to hold a book and read, I can’t even use my cell phone because I can’t move my fingers.
I start to think and worry. What will happen to my work? Will I be able to get my degree? How will I manage my daily routine in the future if residual symptoms remain? Hours and hours go by.
The most beautiful distraction is the telephone. The difficult part is that I cannot take or make any calls myself. I ask the nurses to dial a number and they put the phone next to my head on the pillow. I talk on the phone a lot with friends and daily with my family. Every conversation gives me courage and hope, which I noticeably need every day. They tell me what is happening “outside”. I don’t notice anything about the Corona crisis in the hospital. Every day physiotherapists and occupational therapists come to me to give my severely degraded muscles a few impulses. Once a day I am put on the edge of the bed, which feels like a balancing act because of the shortening of my muscles due to the many times I lie down in pain. Supported by two therapists, I am placed on my legs. I only last a few seconds until the sweat runs off my forehead from the pain and strain.
After the first plasmapheresis sessions I notice a slight improvement. I can open my fingers slightly and put my arm on my thigh. I can also adjust my legs a few centimeters in bed. However, shortly afterwards I notice how the weakness creeps up my legs. “This is an unusual course with you”, the doctors attest me. A statement that does not necessarily encourage me. I breathe shallower and in the evening I notice that I can hardly lift my head from the pillow. My lips feel numb and speaking is hardly possible. At dinner I need an hour to chew a sandwich. The doctors examine my lung volume, which is only about 30% of that of a healthy person. To be on the safe side, I am transferred to the intensive care unit for the next few days, as the paralysis can spread to vital organs such as the heart and lungs. I sleep very badly because the noise of medical equipment, cables and tubes on my body does not necessarily contribute to the comfort factor. My hope that everything will go back to the way it was disappears with every hour. However, my family on the phone and the local nursing staff give me much needed strength.
Because my course of disease is unusual and the progression of the paralysis must be stopped, I receive further plasmapheresis sessions and a cortisone shot therapy. After a few days my condition improves again. I can move my lips again and lift my head off the pillow. I also get my arms placed on my thigh. I can open all five fingers of my left and right hand, but it is not enough to lift or operate things. I can also put my legs back on, but it is not enough to turn around in bed by my own strength. The nurses still have to do this every three hours. I am still reluctant to be happy about the improvement, because the last few times have shown that the illness may not yet be over.
In bed I daily train my little recovered movement strength. I alternately knead a rolled-up bandage in my hand and get a bed bicycle with which I train my leg muscles, which after weeks of lying down are made up of nothing but bone. Together with the therapists I still practice sitting at the edge of the bed and standing on my own legs. “I would estimate that you will need at least six months to be able to walk normally again after your bedriddenness,” my physiotherapist predicts. What sounds demotivating at first spurs me on. I want everything to go back to the way it was before, without any restrictions. Every day I stretch in bed in the morning, at noon and in the evening and try to extend the training times. I notice how every day a little bit of my strength comes back. Even if only in ant’s steps. But even these small steps motivate me to keep going and give me courage. The positive feedback from the therapists also motivates me to keep working on myself.
Slowly the grey clouds of the last weeks start to disappear and I become more confident every day. Meanwhile it is May, almost summer. I am transferred again from the intensive care unit to the observation ward on the first floor of the hospital building. Through the window pane of my hospital room I notice that the trees now have juicy green leaves. I only noticed March and April from my bed. After weeks I see my parents again. Unfortunately, they cannot go to the hospital, but the fact that they can come to my room window several times a week and we exchange a few words is the greatest happiness in the world for me. Just to see them waving and laughing makes me happy. I also get pizza delivered to the hospital by friends. I had already forgotten how good such a pizza can taste! With my fingers I can slowly operate the touch display of my smartphone again. Reading articles again, surfing the internet, seeing what happened at university, every little bit of regained freedom feels great.
Things are going uphill!
In mid-May I will be transferred back to the Heidberg Hospital in Hamburg, Langenhorn, to the neurological early rehabilitation center. A total of eight weeks have passed since I arrived at the hospital with tingling sensations in my feet. Eight weeks in which I have not been able to get out of bed. I have lost a total of 18kg, most of it muscle mass.
In millimeter steps, things are moving forward. Several times a day I have training therapies. I feel like a child who has to learn everything anew. “Will everything go back to the way it used to be?”, I ask the doctors with every visit. Again and again the answer: “Yes, but you need patience, very, very much patience”. “Imagine how limp you feel after a week of cold in bed and start exercising again”, I am told, “You were in bed for eight weeks, that takes time! Patience I don’t have but I have to learn. I continue to receive cortisone and immunosuppressive drugs, which accompany me until today. The worst is over.
The therapists and nurses do their best and motivate me daily during the unforgivingly exhausting sports sessions. In the next five weeks I conquer my life back in small steps. I learn how to sit on the edge of the bed without help. I learn how to grasp, hold cutlery, brush my teeth, wash myself in the morning and evening and dress myself. For healthy people seemingly small things that have been impossible for me the last weeks. I train my fine motor skills with kneading exercises and sorting tasks and write a diary about the course of my illness. Shakily I hold the pencil and scribble illegible words on the first few pages of paper. But every day it gets better.
The next big challenge I take is to move myself from the edge of the bed into the wheelchair, which I previously only got into with the help of nurses. The next highlight is not long in coming. The first excursion into the summer sun. I have completely forgotten how the warm sunrays and the light breeze feel on the skin. I enjoy every second that I sit outside and hear the rustling of the leaves in the wind. In the meantime, visits to the hospital are allowed again, even under certain conditions. After weeks I see friends and family again. Not only through the glass pane of the room window, but as a real hospital visit. Inspired by the freedom I regained, I push myself along the hospital corridor in a wheelchair every day. Every day a little bit further. With dumbbells I do weight exercises in my room and still do my stretching exercises ironically. I have never been limber, which doesn’t make it any easier.
I am learning to walk. Supported by therapists, I first learn on high bar, manage 5 meters back and forth before I sink back into the wheelchair from exhaustion. Every day I am getting better. This is followed by letting go of my hands, which nevertheless hover over the supporting beam. I walk along the corridor on the rollator. One day there. The other way there and back. The therapists say I am making great progress. Several times a day I practice getting up from the wheelchair on the railing in the hospital corridor.
The wheelchair is taken away from me. Now it means only at the Rollator go. Every step is still heavy like lead. The many meters in the wheelchair, which I could move before, I must now recapture. But the legs are getting lighter every day, even if very slowly. I am learning to climb stairs. A few centimeters high beam in the treatment room is initially like climbing Mount Everest. Every day we practice, every day it gets better and after a short time we practice on real stairs. With one hand on the banister and the other on my therapist’s, I can’t get the grin off my face when, after many days of training, I independently climb the second floor staircase of the clinic.
Every evening I take a short walk on the rollator through the inner courtyard of the hospital grounds. Every walk, no matter how small, contributes to my ability to walk a few more meters the next day. My legs are beginning to look like legs again, and every day I notice that my walk is getting safer. It is still shuffling and slow and the heaviness in my legs still hangs on me like a burdock, but at least they carry me from one place to another again after such a long time. In the room I practice walking freely without any aids. I try to walk a few meters from the window to my bed, over and over again, to regain my balance. On long stretches I still hang unsteadily along the wall, but every day I regain more confidence in my body.
In mid-June I will be transferred to the RehaCentrum at the University Clinic in Hamburg, Eppendorf. This is where the next training sessions begin. I receive daily endurance training on the treadmill and strength training on machines. In the first days everything feels shaky and I find it difficult to sit in the machines independently. But every day I notice that it gets better. Especially in the legs the strength comes back. A few weeks ago I could only move 5 kilos with both legs, but now I am able to lift 30 kilos again. Everything far from normal but a huge jump compared to the last weeks. I am motivated to continue and to train my muscles. Although I am not allowed to leave the hospital area, I go one kilometer further into the city center of Eppendorf to get my hair cut at the hairdresser after months. For this one kilometer I need a very long time and in the meantime I have to sit down four times and lean against a wall of a house to rest my legs. But it works: they carry me again. I still find the floor exercises on the mat difficult. I can hardly get back from the floor to my standing position, especially getting up from squatting is very difficult because I still have balance problems. I work with my therapist every day and she gives me tips on how to do the exercises correctly.
I can walk at normal speed again. Next to the rehabilitation center there is a large, spacious park which is often used for jogging. On sunny days I practice running here with my therapist. At the beginning I only manage a few meters, but every day my endurance comes back and the distance covered is longer.
I often go for walks in the park with friends who come to visit me. The visits are always the best part of the day. It is just wonderful to have a bit of normality again, to talk about everyday things and to have the feeling to be part of the daily life again. In Eppendorf I also go for an espresso every day, a little ritual I have learned.
On July 24th I will be released from rehab. After 122 days in hospital and subsequent rehabilitation I finally come home. The feeling to walk through my own front door again is indescribable after such a long time. Never before was I so happy to be home again. To sleep the first night in my own bed again and wake up in the morning without a nurse bringing breakfast to my room or a therapist calling for an appointment is beyond words.
I am writing this blog article at the end of September this year, just under two months after my release from rehabilitation. In the meantime, normality has largely returned. I have also started working again, for the time being only in my home office. I have resumed my studies and am thinking about a topic for my master’s thesis. I’m going back to the city by bus and train, I drive my car, dress alone and have no restrictions in my everyday life.
I still have to work on my endurance. For example, I still find jogging and climbing stairs a little difficult. At home, I regularly do mat exercises which help me a lot. A few residual symptoms such as discomfort in the soles of my feet and on tiptoe are still present, as well as a slight tremor in my hands, which, like a scar, is a reminder of the serious illness I had a few weeks ago. These are all long-term symptoms that I can live with and that do not restrict me.
A new life.
The question of what caused the nerve short circuit in me is still unclear. Sometimes I wonder if it was due to my lifestyle. I didn’t live unhealthy, did sports from time to time. I am a non-smoker, I have not drunk either. At the most I had a little too much coffee now and then. If I knew what it was about, I could change it. But the question of the cause will probably remain unanswered forever. Finding an answer to this question is no longer important for me. I am well again and I was lucky.
On August 23 this year I officially celebrated the first birthday of my new life. A new life that I lead much more consciously “thanks” to the illness.
Today I can say that I have defeated the disease. The doctors who made the diagnosis in March of this year, saying that the prognosis for GBS was good despite the severe course, were right.
It’s always easy to say, but GBS is one of the diseases for which it is important not to lose hope! The frightening thing about the disease is the long period of time over which it extends. I’ve had a lot of time to think about it and it’s impossible to avoid getting into brooding and losing sight of the light at the end of the tunnel. The telephone calls and visits from my family, my relatives and my friends were especially helpful and the weeks of work by the doctors, nurses and therapists who gave me a lot of strength and courage despite the stressful pandemic period in the hospital. I have learned to accept help, both mentally and physically and I am very lucky to have many dear people around me without whose help I would not have coped so well with the illness. There is actually something to the kitschy saying “Love can move mountains”. I can now confirm this.
One of my therapists said to me, “Don’t let it get you down, you are the boss over your body and not GBS! He’s right. Even if the disease throws you back at first, it is important to hold on to your goals and not lose sight of them or even give up. Maybe I need a little longer to reach them or I have to take one or the other detour. However, the most important thing for me is that I don’t let the illness get me down and continue with my life exactly where I last stopped a few months ago.
In the morning when I get up I sit down on the edge of the bed for a few seconds and see if my legs can carry me again that day. A little quirk left over from the long stay in hospital. I have learned to appreciate the little things in life more. Getting up in the morning and being able to walk by myself, making myself a cup of coffee, brushing my teeth, getting dressed and all the seemingly small things that were not possible for many weeks and that were taken for granted for years.
I would like to say thank you, to the many people who have helped me in the last months and at the end I will simply say briefly and concisely: “We can start again!”