…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 this water retention, cool the inflammation in my knees down. When I pressed my finger lightly on oedema, the impression would remain visible for minutes.
Stretching and bending became more and more arduous and painful for me. I started wearing wide clothes that had to be easy to put on. My skin became dry and brittle; my gums were bleeding almost daily.
But as long as I moved, the physical restrictions stayed within certain boundaries. I replaced speed and agility with planning, effective work, longer working hours and lots of creativity. Although I always preferred to do everything myself, I began to delegate more work to others and became more frugal in my demands on external appearances. Only this way, I was able to balance both household and business.
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. I was then only able to move very badly: Only with difficulty could I get up from sitting, only do slow, tapping little steps, a rolling of the soles of the feet was impossible and not to even think about taking on a staircase. To get out of this slow motion, I needed five to ten minutes of movement.
I took my rheumatism as a case for the doctor and medicine. I felt helpless and trusted that the rheumatologist would do his best. Surely my illness would be unbearable without the medication he prescribed for me. With silent shock and desperation, I ran 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 marginalized, I decided that I better didn’t talk about my disease. Only my parents and my grandmother wouldn’t avoid the topic. They consoled me with their sympathy and kept fetching me from my loneliness. The loving touch of a cool, gentle hand on my hot, thick joints did me very well.
During sleep, 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, I felt moderate pain in my arms and legs and inflammatory attacks accompanied by even more intense pain. As long as I was in motion, I mostly felt pain on overload, e.g., when carrying too heavy things.
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 a delicate touch on my skin and therefore drove along on things with more intensity than necessary.
Later, the rheumatologist referred me to X-rays for my hands and feet. At that time, my fingers were already bowl-shaped and bent inwards. I was supposed to put them on the pad but couldn’t force them down onto the black plate.
The rheumatologist was my haven where I could “escape “when inflammatory pain and discomfort would get overwhelming. It was comforting to hear that the doctor already seemed to know what I described and what medication was required. “At last, “I thought, “someone else than my closest family members understands my distress.” Because I had rheumatism, I received a specific recognition, which seemed to value me as a human being and at first enjoyed this subjective gain of the disease.
But I soon realized that this wasn’t the right way to achieve respect. “This is wrong “, I thought. I am important, not the disease with which I am struggling. 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 valorize myself by having a disease. I didn’t want to be a brave patient whose job it was to endure her suffering bravely. After all, healing RA was my goal – not the recognition by a rheumatologist and his team.
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 and bottles and glasses, thus converting the 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 wasn’t able to strengthen my grip any longer. 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 went by, I had to become more and more apt to handle things differently than I used to. For instance, to pick up and carry a bottle, I had to tilt it slightly, put one hand underneath it, and then press it against me before I could lift it. As a precaution, I attached the end of the dog 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 than usual.
It felt like a thick dough stuck on my knees as I walked, and I suffered from a sharp pain beneath my kneecaps. To “climb” the stairs, I needed both my hands and arms to get hold of the railing and swung 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 was often afraid to fall 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 in the knee, going downstairs was just as tricky. At the same time, I was always afraid to tip 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.
Whatever fell remained to lie on the floor until someone else picked it 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 have 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 a chair or something 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 poorly moving legs into the car one after another. After all, I managed to drive because my joints, fortunately, worked so far to operate the steering wheel and the pedals.
Since I took the medication my doctor prescribed, nausea, dizziness, and circulatory problems became habitual companions. 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 over eighty years 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, rarer two different body parts at the same time.
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 attacks 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 realized, that I could’ve exercised with my HeilÜben exercises during any conservative treatment and therapy.
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