Marga Heims, 57, looks suspiciously at the weather forecast for the next week. As an MS patient, she cannot stand the high temperatures. Heat intolerance is common in people with multiple sclerosis. It is relatively unknown to the general public. “It’s a disaster that can’t be mitigated, the next few days can’t come soon enough for me.”
At home in Pavel, Marga now stays indoors as much as possible. “I’m really afraid of the heat. I can’t work and I don’t burn forward. I have trouble with my eyes, difficulty raising my arms and remembering things. Sometimes I do some shopping at eight in the morning, but I don’t go out for the rest of the day. You feel isolated because of that.”
There are about 30,000 people with MS in the Netherlands. Because of this chronic disease of the central nervous system, patients have difficulty moving, seeing, or speaking, among other things. These symptoms temporarily increase when the thermometer goes off.
Not everyone has the same symptoms
According to Jeroen Musters, the good news is from MS Brabant West Association That additional symptoms such as fatigue, numbness of the extremities, blurred vision, and problems concentrating disappear when the temperature drops: “Not everyone has the same complaints. There are patients who do not even have heat intolerance.”
Marga was diagnosed with MS 28 years ago, shortly after the birth of her youngest daughter. “My world collapsed until I was selected to participate in the trial of my first inhibitor. This saved me. A few years ago, I had a serious relapse (relapse, ed.). But now the situation is stable and I have found my way again.”
Iced shower with water from beer cooler
In fact, just like everyone else, MS patients are also advised to drink a lot, calm down and eat ice cream more often in the coming days. In the past, Marja decided to take another step forward. I took an ice shower with water from a beer cooler.
That was an alternative method. The tap water wasn’t cold enough so we had to come up with something. We managed to buy an old beer cooler in the cafe. My helpful husband connected this thing to the faucet in the bathroom. After spraying myself with extra coolant water, I felt reborn. I was able to move forward a few hours because unfortunately it was only a temporary effect.”
Benefit from understanding
In addition to physical means such as taking a cold shower or wearing a cooling jacket, MS sufferers particularly benefit from understanding, according to Marja. “MS, unlike a broken leg, is often invisible. So I advise patients to draw attention to their condition. I mention it, for example, at a business meeting with colleagues. You simply get tired faster, but this certainly does not make you pathetic. “.
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