“Pain.Pause.Live.” - a journey from migraine to myself!

Svenja reports on what happened when taking part in the Pain.Pause.Live.-program.

I have been living with migraines for over 40 years, an incurable neurological disease that has been chronic for 13 years. Doctors said I was a pain patient. I carried it around with me like a stigma for years. Doctors also said I had to live with it, but they didn't tell me how to do it.

And the pain has always been nasty.

It hurt like crazy, isolated me, made me sensitive to everything and everyone. I constantly felt misunderstood and treated unfairly. It was so unfair. I constantly had to cancel activities and fun with friends and explain myself. I was constantly sitting in waiting rooms with new doctors, physiotherapists, alternative practitioners, faith healers and that took its toll on me.

At school, at university and later at work, I couldn't always perform as well as I wanted. Everything was extremely exhausting. Dealing with all the tips and advice from family members, friends, acquaintances and work colleagues, what they had heard or read somewhere, somehow, meant a lot of pressure. I knew they meant well, but I also got the impression that I wasn't functioning as I should. And if I had wanted to try everything that was advised, I probably wouldn't have finished today.

And then I also had to deal with my pain when it wasn't there. Keeping a pain diary means making precise notes about when, why, how long, how severe, where exactly, what side effects, etc. my pain occurred. What medication I took and when, and how it worked. I had to think about what I should have done or not done, and then torment myself with my guilty conscience because I hadn't been disciplined enough or just not good enough overall. I always felt like I HAD to do something.

The fight: I wanted to get rid of the migraines, absolutely

Sometimes I tried to ignore them, I cursed them and myself too, and I fought like crazy. For years. Against the pain and against myself. The medical profession encouraged my fight by treating it with ever new means. A few years ago I was able to fill an entire A4 page with closely written information about the medication I had taken up to that point. The countless attempts at alternative therapy emptied first my parents' pockets and later mine. I had to work 20 hours a week in addition to my 40-hour work week to fight the migraines.

I also developed a few habits that helped me in the short term but were not particularly beneficial in the long term. I endured the migraines, tried to ignore them and struggled through many appointments just to be reasonably healthy and productive. When I went to appointments, I tended to not say yes at all or to be vague in my statements in the expectation that I would have to cancel anyway. Or I would leave parties, events, birthday parties, etc. earlier than I actually wanted to, even though I am basically more of a night owl than an early bird, out of fear of the next migraine attack.

After an attack, which usually put me out of action for three days, I started working even harder, getting involved, exercising, doing housework, etc. to somehow make up for the lost time. I didn't allow myself the regular rest breaks I needed to get my work done. The next attack was inevitable, but I didn't have the tools to change anything. Most of the time I wasn't even aware of the processes.

It wasn't until I had a moderate depressive episode due to an 8-week status migraenosus (i.e. a persistent migraine attack with uninterrupted pain of a 6 on the pain scale of 0-10) that I received any psychotherapy. But here too, the focus was on what I could do to relieve the pain, fight it or avoid it. Helplessness, frustration, fear, anger, resignation - all feelings that dominated me at the time.

Before I met Gideon and the Pain.Pause.Live.-program, I was always busy with my illness, identifying the causes of the pain, the pain symptoms, pain treatment, etc. Everything revolved around the pain. But had that helped me enough? The bitter realization was: The bottom line is not.

Pain had only gotten worse and I was less and less able to deal with it.

Knowledge is the basis for every successful strategy, I completely agree with that. Does everything have to revolve around the pain, i.e. the problem? No, it doesn't have to! I was looking for an alternative for a long time. I wanted more life.

With Pain.Pause.Live. Gideon showed me how to do it

Today I can say: "More life? Look around, listen, feel inside yourself - you are in the middle of it and you have it in your hands!".

I am not pain-free and the pain is still nasty. I also have more days of pain per month than I would like, but my focus has changed. I am happy (most of the time) and I am convinced that everyone can learn the ability to be happy, regardless of their life circumstances.

My most important realization is:

We don't have to wait to live until we are no longer in pain. Quite the opposite!

Today I can focus more on what I enjoy, where my body says: Yes, that's exactly right, that's how I like it. I have become more capable of taking action. I no longer constantly struggle with my fate, I have accepted that migraines are part of me.

My brain works a little differently and needs a special care program to function well. In our fast-paced everyday lives, that's not always easy and I don't always have the hang of it. But I know which adjustments I can make. And I communicate a lot more with those around me about how I'm doing and what helps me. This means I get more understanding and support from that side, which is really good for me.

I first had to find out for myself what is really important to me and what I actually want. For so long, I had only dealt with what I couldn't do because of the pain, so it was completely unusual for me to look at what I could do.

Pain is not just physical. Our thoughts and feelings play an important role. These are all too often negatively colored and "naturally" always appear out of the blue at the most inconvenient times, whether I want them to or not.

And then there is the behavior. Many conscious actions as well as actions that run completely automatically. "Step into life" is what I call the autopilot.

What I learned in the course

I now know how to notice my thoughts and feelings in the first place, in order to then decide how I want to deal with them. And I have developed alternative courses of action for myself that make me feel better and that connect me with the feeling of "living" and not with the feeling of "functioning". This has significantly improved my quality of life. Above all, this ability has taken away a lot of the feeling of helplessness that I had often felt before.

I have become an expert on my chronic pain, have learned that it is an indicator from my body that something is wrong. And therefore it is not so easy to fight because my body wants to survive. There is something to be said for that and it is a nice thing. I have learned that too. And that was a big pill to swallow.

The program has reconciled me with many attempts at therapy, including those from conventional medicine. Nothing was or is free and can still be useful and necessary. Medication, physiotherapy, whatever, as long as I have a good feeling and don't have to bend myself to implement it.

It's my life! I'm in the middle of it, I don't have to achieve anything first to then give myself permission to live. And I'm the one who can contribute the most to improving my quality of life.

I don't have to do what others expect of me. I can listen to advice - including from doctors - and then make my own decisions. If I want to try a new medication, I don't do it because a doctor told me to, but because I've become convinced that it's the right thing to do. If I want to lie down, I don't do it because I feel at the mercy of the pain or because I want to avoid anything, but because it's good for me now.

And I have written down a sentence that I honestly don't always put into practice, but which I think is crucial: talk less, do more!

Pain.Pause.Live. brought me together with like-minded people

People who have to deal with pain are people who understand me better, can relate to my worries and fears or even share them because they have to deal with similar issues. Everyone has their own path to take, but in the group I received support, felt well looked after and strengthened.

The course is there i is structured in such a way that you are right in the middle of it from the start. It took courage and a bit of perseverance to deal with the things that determine my life and that prevent me from living the life I actually want to live. And it took a few AHA moments to admit to myself what I really want.

PPL definitely helped me. I learned a lot about myself. What I do, when and why, and why certain behaviors always lead me to the same result.

All of the exercises we did in the group meetings had concrete added value for me. Gideon, as an expert and a pain patient himself, was able to support all of the topics with his own experience, which was very helpful. He was part of our group.

At the end of the meetings there was always weekly homework. I still benefit from these worksheets with all of the valuable content today. It was always about developing tools for action for concrete everyday life, finding out which ones work best for me. These were then practiced in everyday life, stumbling blocks were identified and cleared away or ways around them were found. So today I can draw on some of them more or less automatically.

The mood in the group was open and positive, even though we all lead a painful life. We have PPL and Gideon’s instructions to thank for this. He always made it a point that everyone felt their pain was appropriately recognized, that they could verbalize it and all problems, and then look constructively: Where does it come from, where does it lead, what alternatives do I have and how do I want to deal with it in the future. Later we reflected on what had changed, can it stay or do I want to adapt it again.

Even today we still have loose contact in the group via a messenger.

I always felt welcome, valued and seen. My experiences, as well as those of each individual, were valuable to the group. Here we had the space to deal specifically with the issues that concern us all, but in a positive way. I still find that very valuable today.

Pain.Pause.Live. is great

At first I had a few problems with the name of the program. It somehow triggered me. Because on the one hand I wanted more life, but on the other hand it hurt to admit that I had actually felt so cut off from it. Today I am reconciled with the name.

I am still a pain patient, but first and foremost I am a person with a wonderful life.

Thank you so much