My name is vera (a.k.a veerla) and I have been diagnosed with erythermalgy (primary variation of erythromlelagy). It takes me a lot of courage to write this discussion, because I have only talked about this with my closest friends/family members.
I wanted to talk to you about the following: I have been sick for 6 years now and I have transformed from being able to work full-time to being supported by disability benefits. I cannot work any longer and I am now 30 years old. With the help of friends/family and my therapist I have come a long way. Now I acknowledge the difference between having pain 24-7 and suffering. The former refers to my body and the latter to my state of mind. I do believe in enabling ‘mind over matter’, however, I am very very scared for my future.
My EM progressed so rapidly in six years, that I am scared I am not able to live another 40-50 years. This, because I am afraid that the suffering will dominate the pain, and that I am not strong enough to physically endure this much pain. I do have a awful lot of pain every second and every minute, and I think when I say this many of you can relate (which is not that common to me, most people just don’t know how strong this pain can be).
I keep making concession regarding my joys of life and keep adjusting my daily activities to my bodily pain. Which are getting less and less…(some days I am in bed for weeks in a row, being able to do nothing but watch TV/series.)
I still have therapy to give me perspective, I use mindfulness trainings and I keep being honest to my partner and parents about the pain versus suffering ratio. However, the last time I was in the hospital it first looked like that the ketamine didn’t work and that my new pain level would be through the roof for the rest of my life. Then I realised that ‘what if you do reach this level of pain on a 24-7 basis?’ The ketamine helped a bit, I still experience a high pain increase compared to 3 months ago, which is now my new daily pain level. I am doing okay now, but I am still unable to actually comprehend how I can keep dealing with so much pain for the next decades.
Therefore, I hope to write with people who endure EM for many years and hope to have a honest and open discussion about pain versus suffering. Just any advice, any experiences or whatever to give me some insights on how to handle the situation when pain becomes suffering. My bodily pain never stops…it is always there. I have nothing what brings me any relief, only to try to stay calm and mentally ‘own’ the pain. Is there anybody in the same position as me, who has endured progressive EM for many years.
Hope to hear from you soon, and thanks in advance.
Ps: Most times I am a happy person and I am able to get perspective, so no worries that I will do some irresponsible and impulsive stuff. And yes, I know that in our position the ‘what if-game’ is not productive AT ALL. I just want to talk about your experiences which can hopefully help me stay strong and be positive about my future.