…During the fall of 1994, my knees and legs started to swell and felt feverishly warm. The rheumatologist explained to me that – as a response to the inflammatory heat in my knee joints – my body would form oedema to, through water retention, cool down the inflammation in my knees. When I lightly pressed my finger on oedema, the impression would remain visible for minutes after.
Stretching and bending became increasingly arduous and painful for me. I had to start wearing loose-fitting clothes that were easy to put on. My skin became dry and brittle; my gums were bleeding almost daily.
But as long as I kept moving, the physical restrictions stayed within limits. I replaced speed and agility with planning, more efficient work, longer working hours and lots of creativity. Although I always preferred to do everything myself, I began to delegate more tasks to others and became more frugal in my demands on external appearances. Only this way was I able to balance both household and business.
My rheumatoid arthritis continued to progress during the winter of 1994/95.
After resting, e.g., after prolonged sitting, I felt like a rusty old robot and had difficulties getting moving again: Only with difficulty could I get up from sitting, only do slow, tapping little steps, rolling the soles of my feet while walking was impossible, and I could not even think about taking on stairs. It took me five to ten minutes of moving to shake the rustiness and be able to move at my normal speed.
To me, my rheumatism was for my doctor and medicine in general to deal with. I felt helpless, but I trusted that the rheumatologist would do their best. Surely my illness would be unbearable without the medication he prescribed for me. Accompanied by a numb feeling of shock and desperation, I hurried on through my life.
I saw and felt my sick body and had no idea why all of this was happening to me.
So I took care of the areas I was used to and where I still felt competent.
At first, I tried to talk to family and friends about my rheumatism. But when it came to the people they wanted to deal with, functionality was essential. Visible injuries, such as a broken leg, were easy to classify and understand. But rheumatism, which appeared to them in the form of swellings, distortions, awkward movements or a tired, grim face, was neither as clear as a fractured bone nor as commonly understood as the flu. Rheumatism made them feel helpless. So in order not to be marginalised, I decided that I would better not talk about my disease. Only my parents and my grandmother wouldn’t avoid the topic. They comforted me with their empathy and helped me escape my loneliness. The loving touch of a cool, gentle hand on my hot, thick joints did me a great deal of good.
By then, while I slept, the pain usually arose alternately in my fingers, hands, wrists, forearms, elbows, shoulders, legs, knees, feet, and toes.
During the day, after the morning stiffness of my joints, I experienced moderate pain in my arms and legs, accompanied by inflammatory attacks that intensified the pain. As long as I was in motion, I mostly felt pain on overload, e.g., when carrying things that were too heavy for me.
Besides, I got a “moon face” – bloated and therefore plump – caused by taking cortisone.
My fingers continued to curve towards the palm of my hand. For the first eight weeks of my illness, I was, with growing effort, still able to stretch them or to make a fist. But now, even that didn’t work anymore. Over time, the fine hairs on my fingers and the back of my hands started to break. Soon, they were thoroughly rubbed off because I no longer felt delicate touch on my skin, and therefore touched or ran my hands over things with more intensity than necessary.
Later, the rheumatologist referred me for X-rays of my hands and feet. At that time, my fingers were already bowl-shaped and bent inwards. I was supposed to put them on a pad, but couldn’t force them down onto the black plate.
The rheumatologist was my haven, where I could “escape ” to when my condition and the inflammatory pain would get overwhelming. It was comforting to hear that the doctor already seemed to know the things I described and the medication they required. “At last, “I thought, “someone other than my closest family members understands my distress.” Because I had rheumatism, I received a specific recognition, which seemed to me to be a valuation of me as a human being. It was the only thing I had gained from my disease, and at first I enjoyed it.
But I soon realised that this wasn’t the right kind of validation. “This is wrong “, I thought. I am important for the person I am, not for the disease I am struggling with. And if life holds any appreciation for me, then it should be for me as a person and my achievements. I didn’t want to valorise myself or be valorised by others for suffering from a disease. I didn’t want to be the brave patient whose job it was to endure her suffering. After all, healing RA was my goal – not the recognition by a rheumatologist and his team for how well I was doing with it.
Increasingly, I had to cope with more and more restricted movements. It was hardly possible for me to turn or to screw anything. I used special tools to turn knobs on doors, bottles, and glasses, thus converting the needed rotation into a more manageable lever movement. My hands felt increasingly weak and powerless.
Often things (a bottle, for instance) slipped through my fingers because I couldn’t close them properly around what I was holding. I couldn’t hold on to the dog’s leash if it suddenly jerked. And the dog was the size of an average indoor cat.
As time passed, I had to become increasingly adept at handling things differently than I used to. For instance, to pick up and carry a bottle, I had to tilt it slightly, place one hand underneath it, and then press it against my body before I could lift it. When walking the dog, I, as a precaution, attached the end of the leash to my belt. Even handling simple things like cutlery, scissors, or keys was difficult and painful, if not impossible. Some things were still somehow manageable with good ideas, but took at least twice the time as they used to.
It felt like a thick dough stuck on my knees as I walked, and I suffered from a sharp pain beneath my kneecaps. To literally climb the stairs, I needed both my hands and arms to grasp the railing and swing my hips forward, step by step. For this effort, I usually needed almost the entire width of the stair tread for myself alone. I was glad when no one came, and I was often afraid of falling over. To walk up the four stairs in the house, each with seven stair treads, I needed quite a while. With legs that could barely bend at the knee, going downstairs was just as tricky. At the same time, I was always afraid to trip over because my walk downstairs was usually a bit faster than I wanted, for I couldn’t absorb the pressure of my steps on the lower stair tread anymore. My feet and legs ached with every step.
After I woke up, it took me fifteen minutes to – on hands and knees – get from the bed – to the bathroom. I needed at least about an hour to be able to move my hands, feet, and knees again.
Whenever objects would fall, they’d remain lying on the floor until someone else picked them up.
I could neither lift things nor my small child with my crooked and powerless fingers or aching hands and wrists. Whatever I wanted to raise, I needed to wrap my arms around and pull it upwards.
I avoided kneeling. Not only did it hurt terribly, but I also could hardly get up without help. And pulling myself up at something like a chair was difficult because I couldn’t use my hands for it. I couldn’t quite grab anything anymore and needed objects around or on which I could lay my arms and then somehow pull myself up.
Overall, there were only a few painless times. The disease and its management stuffed most of my days.
Driving a car was a must for the daily commute. But getting in and out was tedious. I dropped back into the seat and then pulled my legs, which were moving poorly, into the car one after another. After all, I managed to drive because, fortunately, my joints allowed me to operate the steering wheel and the pedals.
Since I took the medication my doctor prescribed, nausea, dizziness, and circulatory problems became habitual companions. And even my new painkillers couldn’t control the pain.
Rheumatoid arthritis progressed rapidly and kept attacking both my body and the quality of my life.
Through the research I did in relevant medical and popular science literature, I concluded that the anti-rheumatic drugs I was taking only combated symptoms rather than the causes themselves. And this was at the cost of many and sometimes very severe side effects. Even with temporary freedom from the symptoms due to drug use, life expectancy often shortens, I read.
So my life continued with limitations, finger curvatures and partial numbness of my skin, pain, the fear of the next night and the next exacerbation.
By that time, even my eighty-plus-year-old grandmother was more mobile than I was. She never made it clear that she was aware of that, but encouraged me and cheered me up again and again. Without lamenting and complaining about my condition, she accepted me exactly as I was. She always had the gist in mind, never the shell. I was first and foremost her granddaughter; rheumatism did not change the person I was for her, despite the disease-related changes.
I didn’t have to say much about how anxious and desperate I was. Grandmother just knew and bore the heaviness of my life, just as we rejoiced at the beautiful. Thanks to her, I stayed flexible, thankful and happy.
And then, all of a sudden, there was a rheumatic nodule on my left foot. Right beneath the buckle of my shoe, as if it had always been there. I was glad that at least, even if it bothered me, it didn’t hurt.
My days were still steady rheumatism management to cope with a child, household and work, my nights quiet times full of pain and thoughts.
I usually slept sitting in bed, leaning against the corner of my room, hoping that my body would continue to produce its cortisol and that the nightly pain wouldn’t be quite as intense. In most cases, fingers, hands, wrists, or forearms were affected by the painful tearing, and in rare cases, two different body parts were affected simultaneously.
If the pain hit, I would, as I was caressing and supporting the aching region, constantly walk back and forth through the half-dark apartment, expressing comfort and courage in my own urgent and steady repetition. In tears, I said to myself again and again:
“I will not, not now nor ever, surrender to rheumatism. It doesn’t belong to me. I will defeat it.”
One to two attacks of pain per night that woke me were common at that time. The pain I experienced pushed my understanding of what pain can be to a whole new level.
If I then quickly put my body in an upright position, the pain subsided within two hours. To continue lying there and sleeping during the pain attacks was by no means to be considered.
As the day (June 1996) came on, I was too exhausted and tired even to drive; I stopped the medication shortly after the medical treatment. (Since then, I have not been in contact with rheumatoid drugs again.) At first, the exacerbation of rheumatoid arthritis continued to increase. But the side effects of the medication sounded away.
From today’s point of view, reacting by discontinuing my medical therapy was naive, and I strongly advise against risking the possible consequences.
It was not until afterwards that I realised that I could’ve exercised with my HeilÜben exercises during any conservative treatment and therapy.
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