My time with the chronic inflammation of my joints

During the fall of 1994, my knees and legs started swelling and felt feverishly warm. The rheumatologist explained to me, that – as a response to the inflammatory heat in the knee joints – my body would form edema to, through this water retention, cool the inflammation in my knees down. If I pressed my finger lightly on an edema, the impression would remain visible for minutes afterward. Stretching and bending became more and more arduous and painful.

I started to wear wide clothes that needed to be easy to put on. My skin became dry and brittle; my gums were bleeding almost daily.

But as long as I was on the move, the physical obstacles contained. I replaced speed and agility by planning, effective work, longer working hours and lots of creativity. Out of all people, I, who always liked to do everything on my own, had to rely on the help of others and became more frugal in my demands for externalities. Only this way I was able to balance both household and business.

Rheumatoid arthritis also continued to progress during the winter of 1994/95.

After resting, e.g., after prolonged sitting, I felt like a rusty old robot and 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 a silent shudder and desperation, I ran through my life. I saw and felt my sick body and didn‘t have a plan why all of this happened to me.

So I took care of the areas that I was used to and where I still felt competent.

At first, I tried to talk to family, friends, and acquaintances about my rheumatism. But functionality was an absolute essential to the attractiveness of the people they would want to deal with. Obvious injuries such as broken legs were easy to classify and to understand.

But rheumatism, that appeared to them in the form of swelling; 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 it was better for me not to talk about my rheumatism.

Only my parents and my grandmother didn‘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, pain usually arose alternately in the 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, as well as inflammatory attacks accompanied by even more intense pain. As long as I was in motion, I mostly felt pain on overload, e.g., when I was carrying too heavy things.

Also, 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 on the matter – 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 completely rubbed off, because I no longer felt a fine touch on my skin and therefore drove along on things with more intensity than necessary.

Later, the rheumatologist referred me to 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 the pad but wasn‘t even able to force them down onto the black plate.

The rheumatologist was my safe haven where I could „escape“ to 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 certain 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. „It‘s wrong.“ I thought. I am important, not 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 valorize myself by having a disease. I didn‘t want to be the brave patient whose job it was to bravely endure his suffering. After all, healing was my goal and not the recognition by a rheumatologist and his team.

Increasingly, I had to cope with more restricted movements. It was hardly possible for me to turn or to screw anything. To turn knobs on doors and bottles/glasses, I used special tools. Thus, the rotation was converted into a lever movement which I could handle.

My hands I increasingly experienced as weak and powerless. Often things slipped through my fingers because I wasn‘t any longer able to strengthen my grip (a bottle for instance). I couldn‘t hold the dog’s leash if it suddenly jerked, while the dog had the size of a normal domestic cat.

As time went by, I had to become more and more apt to handle things differently than I used to. To pick up and carry a bottle, for instance, I had to tilt it slightly, put one hand underneath it, and then press it against me before I could lift it up. As a precaution, I attached the end of the dog leash to my belt. Even the handling of cutlery, scissors, keys, etc. was difficult and painful if not impossible. Some things still went with good ideas somehow but took several times the usual time.

As I walked, it felt like my knees were stuck in some thick dough, and I suffered from a sharp pain beneath my kneecaps. To “climb” stairs I needed both my hands and arms to get hold of the railing and swung out of 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. The four stairs to the house, each with seven stair treads, lasted quite a while. With legs that could barely bend in the knee, going down stairs was just as difficult. At the same time, I was always afraid to tip over, because the stairs were usually a bit faster than I wanted. I couldn‘t absorb the pressure of my steps on the lower stair tread. My feet and legs ached with every step.

After I woke up, it took me fifteen minutes to get – on hands and knees – from the bed- to the bathroom. About an hour I needed to be at least able to move my hands, feet, and knees again.

Whatever fell down remained lying on the floor until someone else picked it up.

The lifting of things and my little child I could no more do with my crooked and powerless fingers or aching hands and wrists. I had to wrap my arms around it 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 lift myself up.

Overall, there were only a few painless times. Most of my days were stuffed with the disease and its management.

Driving a car was a must for the daily commute. But getting in and out was tedious. I dropped backward into the seat, and then one after another pulled my poorly moving legs into the car. After all, I managed to drive because my joints, fortunately, worked so far that I could operate the steering wheel and pedals.

Ever since I took the medication prescribed by the rheumatologist, nausea, dizziness and circulatory problems became habitual companions. Even with the new painkillers, the pain couldn‘t be controlled.

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 at the cost of many and sometimes very severe side effects. Even with temporary freedom from symptoms due to the drug use, life expectancy often shortens, I read.

So my life continued with limitations, finger curvatures and partial numbness of the skin, pain and the fear of the next night and the pain of the next push.

Even my by that time over eighty-year-old grandmother was more mobile than me. She never made it clear that she was aware of that, but gave me courage, 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 felt, she just knew about it naturally and bore the heaviness of my life just as we rejoiced at the beautiful. Thanks to her, I – at least inside – stayed mobile, thankful and happy.

And then all of a sudden there was a rheumatic nodule on my left foot, just under the buckle of my shoe, as if it had always been there. I was glad that at least, even if it bothered, didn‘t hurt.

My days were still a 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 strong. 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, caressing and supporting the aching region, constantly ran 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 never, surrender to rheumatism. It doesn‘t belong to me; I will defend it.”

One to two attacks of pain attacks per night which woke me up were common at that time. The pain I experienced by that pain pushed my understanding of what pain was to a new level.

If I then quickly put my body in the vertical, the pain subsided within two hours. Lying and sleeping on during the pain attacks was by no means to be considered.

As the day (June 1996) came on witch I was too drugged and exhausted, too tired to even 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 view, my reaction to stop the treatment was naive and I strongly advise against risking discontinuation of treatment.

Rheumatoid arthritis should be slowed down with all available means as soon as possible despite possible drug side effects and interactions.

The HeilÜben can be done at any time during any conservative treatment and therapy.

Read here part one of The way out of the stress-related RA

All the best for you

Laureen

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