Kijk In Corona-tijd fietsen we weliswaar nog niet, maar het staat nog wel gepland voor volgend jaar: klimmen tegen MS. De T-shirts zijn er al. Dit weekend (waarin we eigenlijk naar Frankrijk zouden vertrekken) gaat TeamTandem wel, in vol ornaat fietsen. Maar ik heb inmiddels wel online de minfulness-based cognitieve training (MBCT) getest. Het stemt […]
It’s only two and a half months ago when the neurologist gave me the diagnosis of secundary-progressive MS. When he told us (my husband and me) we were not surprised. This message made us understand the things that happened to me in (at least) the last 13 years. So, in the beginning I was nearly ‘happy’ with the message of having MS. Now, after a while, I start to think of being in one of the 5 stages of mourning as Dr. Elisabeth Kübler-Ross described them. I don’t know in which stage I am, but I am convinced of the fact that a serious illness like MS (and knowing to have it, of course) can lead to serious mourning. And this comes apart from the suffering of being ill.
Stages of mourning [Read more…]
I was depressive during the last five years and I am dizzy. These are things even a doctor not immediately connects to Multiple Sclerosis (MS). But a scan showed that I have MS, secondary progressive MS. That’s what can happen when patients have had schubs without recognising them (neither the patient nor the doctor) and not have had medications for them. Now I don’t have schubs anymore. After all I had a few since let’s say 13 years ago. Now it is getting worse all the time. Who to blame? I don’t know. It’s like it is.
Stress-/pain reduction, here and now
Now I know that I have MS and now people around me know it, stress occurs. For example my mother who lives nearby. She is nearly 67 years old, very vital and she is very touched by what’s going on. She always tries to help me / us. I am very thankful for it. There’s one problem: the more she is moved by my illness, the more stress it gives her. At least I think that her physical complaints are result of her stress about my illness. To be clear: she doesn’t want to learn mindfulness. She thinks she is too old to change, so… But I tried to find out how stress and emotion work on our brain and on our physical well being. This is what experts taught me about stress and emotion.
Why mindfulness is helpful for everything and to everyone
Mindfulness has its roots in (zen-)buddhism, from the eastern part of the western world. It’s about the attention to being here and now. That seems a logical thing. Doesn’t it?
Past, future, plans and policy
But how does attention to being here and now, comply with things like planning and policies? PLanning and policies are important, aren’t they? The western world became dominant by making and realizing plans and policies. We always talk about the future and about opportunities. We always worry about what the future could bring. What westerners forget, is that beside the good plans that are made, there are always worries, group-wise and individual. We worry all the time, about what could happen to us in the future, about things that could happen to our loved ones.
Is it wrong? [Read more…]
For now, I switched from Dutch to English. The title is better in English and there are patients with MS all over the world. I try to find information about it everywhere. Most of the information is in English. Most of the people in my homeland speak and understand English.
A patient wrote on http://www.patientslikeme.com: ‘MS sucks’. I think he is right. But I also tried to find more positive information. That is difficult, I know. There was a time in which I was curing from depression. I am using medication against it . Now I know that it is one of the symptoms of MS. But a lot of people around me didn’t like the word ‘ depression’. Much too complicated and spooky. I also have problems with keeping my balance. It was easy to understand that someone depressive has problems with keeping her balance. Dizziness is a symptom of MS too. It shows me that only people who have MS know what it is, how it feels. And perhaps some doctors too.