Table of contents
Did you first think: Not much has changed?
Me too
Did Florence Nightingale know what lockdown was like?
12th May is Fibromyalgia Awareness Day worldwide. This year, in times of Corona, we also commemorated the 200th birthday of Florence Nightingale on that day. Who was she?
Florence Nightingale lived in Victorian Britain and belonged to the upper class. She was interested in the fates of the poor and sick. Her family wasn't too happy about that. She wanted to make a difference, so she trained as a nurse and made a great impact on this profession. It is said that she founded the nursing institution we know today.
During the Corona Pandemic, many of us, if not before, have become aware of what an amazing job people in the nursing professions do. I very much hope that this recognition will translate into actions that will improve the lives of people in the care professions permanently. Clapping is ok but it doesn´t put butter on your bread.
I will describe Florence Nightingale in detail in another post. Some doctors assume that she suffered from either fibromyalgia or ME (Myalgic encephalomyelitis) also known as Chronic Fatigue Syndrome. Or both. In the later years of her life, she was confined to her bed a lot. In this respect, as a previously very energetic and courageous woman, you could say she knew what lockdown was like.
I don't think she would be very happy about the way things are in the nursing professions today. She would probably have assumed that there would be better help and treatment options for diseases like ME or fibromyalgia by today.
Nursing is not a holiday job. It is an art and, if it is to become art, it demands as much dedication, as much preparation, as the work of a painter or sculptor.
For many people with fibromyalgia, "lockdown" is a situation where there is no prospect of loosening up
In the video, Jennifer Brea talks about her disease "myalgic encephalomyelitis" CFS. Some fibromyalgia sufferers also suffer from this disease. The effects on daily life are partly similar.
Lockdown - Tell us about it
Much of what came with the lockdown: uncertainty, restrictions, hardly any social contact, is not at all new for us and doesn't come with a time limit. This is our life. We know what it's like not to be able to do the things you used to. And we know the feeling of losing control only too well.
Social distancing?
As far as I was concerned, it was not at all clear to me how little contact I had with other people and how isolated I had been living for the most part until this became a general state of affairs, which was regretted on all sides and personal contact was greatly missed. It suddenly became clear to me how many friendships had not endured my illness. And how much I had withdrawn from daily life.
Receving treatment - on the phone?
Some doctor's appointments took place by telephone or computer. I did not have to make all the usual preparations for the trip to the doctor. In the beginning, I was just thankful that the appointments were not simply cancelled. In time though I noticed clearly that there is a difference between talking to a therapist in person and on the phone. Trust is much harder to build on the phone. On the other hand, it would be very helpful if there were both options in the future.
Everything but Corona is unimportant?
I was reprimanded the other day for postponing a mammography appointment for so long. I thought everything but Corona wasn't being treated. I was alone with my fear and my concerns.
Am I normal now?
In time I felt "normal" in a way because everyone had to stay at home. Then, like everyone else, I tried to tackle projects that had been left behind. Group dynamics were probably involved here. For me it was like trying to walk backwards up a mountain. I obviously don't belong to this group. There were no long bicycle tours, was no newly designed garden, no baking orgies (yeast?) I have frozen yeast in quantities now. I tried out origami. I wasn't so successful with it, but distracted. I, like most people had many conflicting emotions during this time.
Study from Great Britain
A recent study conducted in the UK examined the effects of lockdown conditions on chronic pain patients compared to relatively healthy people. The patients who were interviewed reported an increase in pain levels, were more anxious and depressed. The results of the completed questionnaires completed, however, did not show a big difference compared to before the lockdown. Consequently, the worsening of symptoms was more subjective. In addition, the lack of exercise and social contact certainly contributed to these feelings. From this, it was concluded that it would be helpful to offer more care for pain patients online and thus help to overcome the negatively perceived effects of the lockdown. I think that anyone who had too little or no social contact hardly had the chance to do much exercise, felt somewhat abandoned, would definitely feel emotionally and physically worse than before the lockdown.
Lockdown 2
In parts of the north of Great Britain, lockdown conditions have been in effect again since midnight 30.07. In other parts of Europe, like Belgium, a new lockdown is on the cards. In the USA conditions are particularly bad.
Here in Germany, the support groups provide a lot of information and some are now familiar with online meetings. See links on the "What is fibromyalgia?" page. Links to the self-help groups/associations
Take care of yourself!
Corona Depression
What might normally be a winter depression is a Corona depression this year. In spring we were able to move some activities outside. Now it is difficult to do so. Many who were still confident in spring are now anxious or even angry. No one has patent solutions with a guarantee of success for combating the pandemic. What to do?
- communicate (talk about feelings, or negative effects on the disease) Some support groups now meet online.
- Don't get lost in the mire. Name the fears (job loss, loneliness) that you have and also the anger. Only then will you be able to come up with solutions.
- Listen to your gut too. Your body knows what it needs.
- One approach that sometimes helps me and doesn't make sense at first is: do the opposite! I.e. if you think you are exhausted and want to lie on the couch, try going for a walk or doing some exercise that you can do. Exercise Maybe you will feel better after all. I got this suggestion from the blog What I know is real. The post is in English.
Updates 30.07.2020, 14.01.2021
Sources:
Florence Nightingale. (o. J.). Retrieved June 16, 2020, from https://whoswho.de/bio/florence-nightingale.html
Lost Voices Foundation, help for people with ME/CFS. (o. J.). Retrieved June 16, 2020, from https://www.lost-voices-stiftung.org/was-ist-me/geschichte/
Fallon, N. F., Brown, C. B., Twiddy, H. T., Brian, E. B., Frank, B. F., Nurmikko, T. N. & Stancak, A. S. (2020, June 5). Adverse effects of COVID-19 related lockdown on pain, physical activity and psychological wellbeing in people with chronic pain. MedRiXV. https://www.medrxiv.org/content/10.1101/2020.06.04.20122564v1
Picture: "Corona, Viru" by krishna arts, on Freedigitalfotos.net