Coronavirus and Multiple Sclerosis: “I Especially Want to Stay Relapse-free Now”

Coronavirus: The MS blogger community shares how they deal with isolation, how to protect themselves against the virus, and what they now want from their fellow human beings

Philippa
Philippa
April 2, 2020
title image for coronavirus & MS bloggers: woman looking out of a window overlooking a city

“Coronavirus is everywhere. It is in the media, in conversations at home, it is the dominant topic of the articles I am working on – and it is in my head. The first thing I wanted clarifying was: ‘Do I belong to the risk group because of multiple sclerosis?’, writes freelance journalist and MS blogger, Gina. According to the MS Society, there is currently no reason to believe that people with MS have a higher risk of contracting COVID-19, or a higher risk of experiencing severe symptoms. However, drugs such as alemtuzumab or cladribine, as well as HSCT treatment, can make you vulnerable. Additionally, MS can increase the risk of infection and a severe course can occur if one’s lungs are less well ventilated (for example, in those who are wheelchair dependent or bedridden). We reached out to MS bloggers to learn how they are dealing with the coronavirus crisis and what is going through their minds at this difficult time. Here is what they had to say.

Please be aware that the bloggers quoted in this article write in German, the language in which the communications were conducted.

1. How do you protect yourself against a coronavirus infection?

As we all know by now, staying at home as much as possible is vitally important. The problem for many, though, is what to do about shopping for the essentials. Some MS bloggers have called on loved ones with a lower risk for support. Caro (Female Power Despite MS) has been at home for two weeks; her son takes care of the shopping. Jule (FITNESS • FOOD & MS) receives a supply of healthy, fresh ingredients from the farmer every week, while Heike and Gina also avoid the supermarkets.

“Fortunately, I have a strong social network and I am completely supplied with purchases and so on! So, I don't have to line up in long lines ...”

“When shopping, I feel extremely uncomfortable given the many hands that have previously touched the products. So either my husband goes shopping or I put on rubber gloves.”

While working from home is not a new experience for some (such as Jule (FITNESS • FOOD & MS), for those like Birgit (Almost normal! My life with Multiple Sclerosis), coronavirus has meant needing to adapt to a different way of working. It is one of the ways people are restricting human interaction to the bare minimum to help reduce the risk of infection.

“I have really reduced my social contacts to the minimum – and I have done so since the beginning of March, when the first cases were reported here in Germany. I am working from home; with 3 children at home I have no other choice.”

Thorough hand washing is a given for many MS bloggers. Children, though, may not be so enthusiastic about the idea; Gina has to ensure her children wash their hands regularly and thoroughly, even if she is met with protestations. Social distancing also presents challenges when it comes to exercise, which is important for many people living with MS. Many of the bloggers we contacted continue to go outdoors to get exercise, even if only in the garden.

“I keep the prescribed contact distance. I stay in the home, just go to the garden.”

“Once a day I go for a walk around the former State Garden Show site, near where I live. I always make sure that I am at least 2 meters away from other people, although you see very few people anyway.”

Some of the bloggers we spoke to are simply following the guidelines issues for the general population, not seeing a need to take extra precautions because of MS. Claudia (Care - About Your Life) says she does not believe there is a need for her to take additional measures, a sentiment Gina agrees with.

“Since I don't really belong to the ‘at risk’ group, I'm probably no more careful than everyone else.”

2. What helps you with your physical and mental well-being?

For most of the bloggers we spoke to, the number one item on the list of wellbeing tips for the coronavirus crisis was maintaining a routine.

“I think it is important to maintain an everyday routine, even in these times. Getting up early, getting ready as if to go to work, exercising at home or alone in the fresh air... all of these things help me avoid becoming an absolute couch potato these days. They are also good for the soul.”

“You now have a lot more free time, that you can use for everything that is usually left behind! 😉 I think it is important that you don't just suddenly start living in the day or stay in your pajamas all day, but that you create a structure of your own.”

Heike also takes a lot of time for leisure, relaxation, and reflection. She recommends reflecting on rethinking life. Claudia also sees the coronavirus crisis as an opportunity to reflect on the big picture.

"Stop! Focus! Reflect! It is important to use these ‘times of crisis’ to reflect on his life again… What do I want? Where do I want to go? Is there anything else I really want to achieve?”

Reducing stress is of great importance to many bloggers, not least to keep symptoms at bay.

“It helps me physically and mentally right now to keep the stress level as low as possible. Because if it increases, I have mild symptoms that resemble Uhthoff’s. Unfortunately, this is currently the case. The combination of two bored or frustrated children, homeschooling tasks, and two parents working from home is quite demanding.”

Gina deliberately takes herself out of the stressful situation and goes for a walk in Hamburg. Luckily, the weather has been playing along. Playing the cello is another way for her to switch off and do something about the stress. Exercise and hobbies also help many other MS bloggers manage stress.

“My hobbies and the fact that my life has not changed drastically helps me. I was careful before and I am now. I like to be at home and can keep myself busy.”

“I go jogging on my own regularly (I can still do that well with MS). It's just good for me, especially for the psyche.”

Jule also tries to go outside for at least 30 minutes every day – sometimes in the garden, on the terrace, or for a short walk. She tries to stay upbeat and use her time positively, for example, to stay in contact with her family more regularly.

“I try to not think too much about the virus. I try to see the positive things that can come from the ban on contact and the extra time I have. For example, keeping in regular contact with my family – which can often fall by the wayside in everyday life – or being able to read more, work on my blog, or go into the garden, now that many appointments and commitments are no longer possible.”

Caro also has more time to read; she is already reading her sixth book in two weeks. Netflix also helps keep her entertained. For her mental wellbeing, contact with her friends is important.

“My psyche suffers a little because I feel locked up. But I have dear friends, I can talk to them over the phone at any time. I also cook and bake tasty things with my son, and have bought flowers or picked them myself in a field.”

Caro has also been able to continue physiotherapy with disposable gloves and a mask for the past week. Before you can enter the practice, you have to wash your hands and disinfect them. Gina also takes her physiotherapy appointments, which help keep her healthy.

When asked what helps her with her wellbeing, Katrin mentions the positive effects of her medications.

“My meds help. I’m glad that my treatment is working.”

3. Do you feel well informed about coronavirus related to your chronic illness?

There are different reactions from MS bloggers to this question. Heike and Katrin feel well informed from the news and the internet. Katrin and Birgit take care not to be overwhelmed by the flow of information, while Jule and Gina feel that they have access to enough information.

“I think the information on MS and coronavirus is sufficient. I know that I do not belong to the risk group per se, but that cortisone administration would be really unfavorable at the moment. That’s why I hope that I will stay relapse-free, especially now.”

“I think there is enough information about MS and the virus. I also talked to my neurologist about it. However, I think that with some medications it is unfortunately not possible to say how the immune system will react or how MS will react to an infection, so I follow all the measures and stay at home.”

Caro and Claudia also feel well informed and have found points of contact online where they could ask their questions, such as the Robert Koch Institute. JuSu also has to use a level of initiative to stay informed, as her clinic has not published any information for people with multiple sclerosis.

“Unfortunately, I had to look for all information about coronavirus & MS myself – nothing came from the MS clinic. But I think that the clinic is also hopelessly overrun. Since I'm still comparatively well with MS, that's fine with me – I think there are now patients who need the advice and expertise more urgently.”

Birgit (Almost normal! My life with Multiple Sclerosis) receives a lot of dubious information about the new coronavirus, partly through her job as a journalist. There is also misinformation from gurus and healers. She sticks to a few good sources, through which she is updated every day.

4. Have you already spoken to your doctor? Did he or she have tips?

Even if patients should avoid visiting the practice if possible, you can usually answer questions about COVID-19 by telephone. Claudia got information from her family doctor.

“I can only speak of my MS and in my case, my doctor said: ‘Because you are not undergoing regular therapy or cortisone therapy, you are no more at risk than anyone else!’”

Gina has not yet contacted her neurologist but would do so earlier than usual if there were (supposed) signs of relapse. Jule happened to be at a doctor’s appointment in early March when the first coronavirus infections were reported in Germany, so she was able to get advice in a personal conversation.

“We talked about the fact that I should do home office if possible and, of course, obey the hygiene guidelines. But since everything is new, it is too early to be able to say much with certainty.”

As a member of patient committees, Birgit has access to reliable information and therefore gets along well without tips from doctors.

“The MSIF is a very good source at the moment. They are easy to understand, and the info is reliable. There is also Prof. Giovannoni, who runs a microsite on MS and coronavirus and provides great information on direct patient questions.”

5. What works particularly well for you right now? Do you have a tip for other people who belong to the ‘at risk’ group due to an illness?

Katrin and Caro recommend that people stay at home and accept help with shopping or use a delivery service. Heike advises those who have to go shopping to go to large supermarkets, where there is space to avoid other people in order to keep to the recommended distances.

Jule also finds it important to adhere to the guidelines regarding distance, hygiene, and personal contact. She is happy to be able to work from home. Working and concentrating is much easier in her familiar environment, which makes her feel more efficient and less stressed. Your tips:

“Take a short walk regularly or at least go outside and get some fresh air. I think that exercise and a healthy and balanced diet are important in keeping your immune system strong.”

Should Gina find herself at greater risk, in the event of a relapse and cortisone therapy, she would definitely stay at home and protect herself even more.

“If I still had to go out, I would definitely wear a face mask and rubber gloves when taking cortisone – and also disinfect a lot more. This is how I would behave if I belonged to a risk group – and therefore recommend it to everyone else who is already at greater risk.”

Claudia thinks it’s good to distract yourself a lot, to be there for friends, and to offer them an open ear. She tackles projects that she has been putting off for a long time. And she remains pragmatic.

“DO NOT make the mistake of making coronavirus the center of your existence. If you approach the matter with decency, respect, and a certain amount of confidence, you will find it much easier to get through the crisis.”

Heike advises that you take your time for calls or pen a “good old letter,” and revive contacts that may have fallen by the wayside. She also thinks it is important to distract and develop yourself through hobbies.

“You can continue to pursue hobbies or discover new ones for yourself – with tutorials you can also acquire new skills or deepen others. Fortunately, the possibilities online are limitless.”

Birgit finds rituals and an organized everyday life important. Her tip: Every now and then, have a digital coffee catch-up with friends. Contact with others is also important to Caro.

“Write cards again and get in touch with someone you haven't spoken to in a long time. Use the time to make new plans and set goals for the time afterward. What have you wanted to do for a long time? Maybe you can use the quarantine time for this. This difficult time will pass. It will do so earlier if we all abide by the rules imposed. Stay healthy and I wish you the best!”

6. What do you want from your fellow human beings now?

“#FlattenTheCurve! Follow the suggestions that give tips on how to do this! Contact ban!”

“DECENCY, RESPECT, COMPASSION (not pity!)”

“I want my fellow human beings to understand that there are risk groups that rely on you being considerate.

“That they stay at home, be considerate of their fellow human beings, don't hoard food and goods out of panic, and above all keep their distance, especially when shopping. We can only survive this crisis together if we stick together, show consideration, and develop a community spirit.”

“That they keep their distance and smile. Many have apparently forgotten how to smile. But coronavirus doesn’t mean that we can't laugh with each other or have fun. Yes, the situation is serious, but from time to time a little distraction, fooling around and celebrating an online party with each other certainly doesn’t hurt either. And in a positive sense, they are contagious.”


Thanks to everyone for the great contributions. Take care and stay healthy! 💙


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