Joanna: “I trekked in the desert with Lyme disease”

On the finish line of the Rose Trip trek in Senegal, there is this 27-year-old young woman named Joanna. Like many runners in this solidarity sporting adventure, she came here with a story to defend, a fight to fight. Joanna was a competitive sportswoman, she was a horse rider. But at 23, he was discovered the Lyme disease. Since then, she has lived with many consequences, both from the installation of the pathology (detected late) and from the aggressive treatments she has undergone.

Until a few years ago, Joanna had difficulty getting around. Today, she completes several days of walking, 20 kilometers daily under the crushing heat of the Sine Saloum desert in Senegal. She climbed dunes and faced her fear of seeing this body betray her again. She recounts her fight and this adventure, lived with Lyme disease.

Exhaustion, muscle aches… precede the diagnosis of Lyme disease

At 21, Joanna represents her region at the French riding championships. She has an intense rhythm, “a life at 200 an hour”, in her words. In fact, she is often very tired. Studies and high-level sport are surely to blame, believes her doctor when she consults him, especially since her blood test is back to normal, everything is fine. “You overwork yourself”, we simply answer him. But his condition deteriorates, fatigue increases, turns into exhaustion. Muscle pain appears as soon as she gets up in the morning, followed by pain in the joints, knees, hips, pelviswhich ends up alerting the doctor.

After 6 months of painstaking medical research, a test came back positive: that of Lyme disease. The latter had been rejected at the start, on the pretext that she could not be found in the region where Joanna lives. But upon reflection, his horse was infected with piroplasmosis, transmitted by tick bite, it is therefore likely that she was contaminated at the same time, say the doctors, or for several years. Other examinations confirm the theory of this infection.

In addition to the pain, Joanna suffers from a loss of sensitivity at the extremities and large memory lapses. She knows from Lyme that it is a “highly variable” disease and that she has a chronic form. “I had difficulty walking, it was not a life, so I took the very heavy treatment I was offered, antibiotic therapy, despite the uncertainty of its effectiveness, because it does not work. not in all patients. She is receptive to it, regains mobility, regains memory, but lives with nausea, extreme fatigue, “the impression of being 70 years old”, she summarizes. When she stops treatment after 6 months, she relapses, then she resumes, then relapses. A year and a half later, his condition stabilizes, but the antibiotics have led to immunosuppression which makes her very vulnerable. She has also suffered from asthma, liver disease that blocks iron uptake and irritable bowel syndrome, as side effects of this treatment, she explains.

500 meters, 1km, 5km and a trek

Despite the illness, Joanna is determined to gradually resume physical activity. She dreams of running, but she is told that it is better not to count on it. Out of a spirit of contradiction, Joanna embarks on this conquest, she does a year of rehabilitation in the gym, then starts running, first 500 meters, then 1 kilometer, 5 kilometers… Each time she faces the lung pain, muscle pain. She participated in several 5 kilometer races and enrolled in an athletics club. She is looking for her next challenge when she discovers the Desertours organization’s Rose Trip trek. She is registering for the first edition in Senegal, in April 2022.

She leaves filled with hopes and apprehensions: the fear of getting sick, of seeing your body unable to keep up mingle with the desire to succeed in completing and “finish well, in good conditions”, as if the disease did not exist and she was like any other runner. On the spot, she notices a first inconvenience, her lack of sensitivity at her fingertips transforms the lacing of her trekking shoes (which must be very tight) into a real mission, but this is only a detail that she underlines in passing by, with a smile on his face. The two years of work “to rebuild my muscular capacity in the legs” paid, she did not suffer at that level. In general, Joanna adheres to a strict lifestyle to protect herself from hazards. Before leaving and when returning to the bivouac each day, she did stretches which allow her to protect herself from aches.

Her immunosuppression makes her vulnerable and the conditions on site are not always ideal: the diet changes, the water is not drinkable, the toilets are shared… As we know, abroad it is easy to contract a tourista, that she would risk living very badly. Joanna has three fragile organs, her intestines, her kidneys and her lungs, which she wants to protect in order to experience the trek without incident. “So I was very careful with everything, I controlled what I ate, avoiding meat at all costs for example, which makes me vulnerable in the event of inflammation, I contented myself with certain fruits which are body, like banana, I only ate neutral things, like rice”and too bad for culinary discoveries.

His bone fragility at the hips was not easy, despite shoes with the best possible cushioning. “In the dunes, you had to climb diagonally, my hips weren’t at the same height and it was very complicated. Every day it was a little more painful”, she observes. The only way to calm the pain and avoid limping is to stop walking. “But it was not an option for me, so we grit our teeth and continue,” she smiles after this effort. When her back pulls too much, due in particular to the weight of the bag, which weighs around 5 kilos, she finds a simple solution: “I change position, I put it on my stomach and I alternate every hour to relieve myself”, motivated by the prospect of the finish line.

A message of hope to patients in his situation

The other obstacle was fatigue, the main symptom of this disease. “I’m like a battery that is discharging, I leave in the morning with all my capacity, but at 4 p.m., it’s over, I’m off”, she illustrates. If it is usually enough for her to go to bed, she makes sure to hold on a little longer each day. But to face the next day, she needs to sleep early, it’s not negotiable.

The trek is for her the opportunity to go further in the rediscovery of her physical abilities. But also the ideal event to reconcile with his condition. Despite all her damage, she is able to live this intense adventure. “I fought against this disease, when something was wrong, I wanted to go against it, when I was tired, I happened to refuse it and to force”, she remembers. “Now, I no longer fight against my body, I make a pair with my disease, I relearn to know myself”.

In terms of food, medication (she had planned everything in case of a problem), psychological, physical, the trek allows her to realize that she knows the warning signs and that she knows how to respond to them, that she is no longer invaded by the disease but that she lives with. By testifying, she would like her awareness to be a message of hope sent to patients whose bodies have let them down. She would like to tell them that we can sometimes make predictions lie and get back on track.

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