I made it to 9 seizure free months! And as happy as I am about it, the past months have also been challenging for me. Why it has been a challenge? Let me fill you in.
When I had a my last seizure 9 months ago, I did not seem to recover as fast as I would normally do (within a week and a half). My body hurt in a different way than before. Normally after a seizure I feel my muscles because they are so tense but this time I was pretty sure that after a week and a half it weren’t my muscles that were hurting me. A reason for me to go to the doctors and check it out. Unfortunately, this turned out in disappointment once again. The doctor did not listen to me and send me away with the worst painkillers (anti-epileptic drugs) I had ever tried. After one stoned afternoon on the couch because of the medication, I decided I needed to see a specialist.
The waiting list was quite long and as Fall came, my pain worsened. As soon as the weather changed I experienced a lot of pain. So much I was beginning to get worried. When I went to see the specialist they ran the normal tests and everything turned out to be fine. A relief but at the same time a major flashback to 6 years earlier during the diagnosis of my seizures. The final diagnosis was Fibromyalgia, also called Chronic Pain. Basically, this is yet another condition that doctors have not been able to trace in the body. Which means that as with the seizures, I will have to find a way to live with it.
As happy as I was that it was nothing bad, at the same time I was wondering how to deal with this new information. Currently I am still trying to figure this out. I do not want to take strong painkillers for the pain because I have the feeling I suppress the symptoms and not really deal with the condition itself.
As I heard a lot of good stories about the effects of nutrition on Fibromyalgia, I decided to watch my diet and I can say that I indeed feel better and the pain is less. Daily yoga also really helps me. However, there are moments that I still have quite some pain and it frustrates me that despite my efforts to minimise the pain as much as possible, it is still there. Especially when the weather is changing!
As I am still trying to figure out on how to live my life with this, I will keep you updated on my journey. Currently, I am on a waiting list for a revalidation programme for Fibromyalgia and I hope to hear from them soon, so that I can get to know more about how to handle this new challenge. In the mean time, I will do everything in my power to prevent a seizure because I know the recovery will be longer and more painful now. Academic literature suggests that there is a relationship between PNES and Fibromyalgia and I have heard that more people suffer from both.
Maybe I should just move to a warm and sunny country? I am sure that would help! 😉