My experiences with the chronic inflammation of my joints

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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 afterwards. Stretching and bending became more and more arduous and painful. 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 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, now had to rely on the help of others. So I had to become more frugal in my demands on externalities. 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. Then 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 an absolute essential. Visible injuries such as broken legs were easy to classify and to understand. But rheumatism, that 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 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, 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.

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 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 wasn‘t 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. „This is 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 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. To turn knobs on doors and bottles/glasses, I used special tools. Thus, I converted the rotation into a lever movement that I could handle. My hands I increasingly experienced as weak and powerless.

Often things (a bottle, for instance) slipped through my fingers because I wasn’t any longer able to strengthen my grip. I couldn’t hold the dog’s leash if it suddenly jerked, while the dog had the size of an average 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. As a precaution, I attached the end of the dog leash to my belt. Even handling of 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.

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” the 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. 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. About an hour, I needed to be at least 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 wether lift things nor my little 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 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 the pedals.

Since I took the medication, my doctor prescribed, nausea, dizziness and circulatory problems became habitual companions. Even with my 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 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.

Even my by that time, over my eighty-year-old grandmother, was more mobile than me. She never made it clear that she was aware of that, but encouraged me, 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. She just knew 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. 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, 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 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, 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 in lying there and sleeping during the pain attacks was by no means to be considered.

As the day (June 1996) came on which 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 therapy.

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

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

Read here part one of: My way out of the stress-related RA begins

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All the best!

Laureen

HeilÜben founder, coach, and trainer

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featured images by Min An, Alex Martin, Luis Quintero, nappy and freestocks.org on pexels.com

2 thoughts on “My experiences with the chronic inflammation of my joints

  1. You are such an inspiration!

    Liked by 1 person

    1. Ubuntu – I am because we are. Thank you very much Diane:)

      Liked by 1 person

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