Accepting living with non-stop pain and NPDH.
It’s just over 5 years now since I had a pain-free day. It’s that long ago. I have no idea what it feels to be pain free anymore. It’s been a journey of ups and downs, more downs than ups in fairness and it’s taken me quite some time to accept that my life will be one filled with pain 24 hours a day 7 days a week.
When people ask me what it’s like, I just say it’s my life, its plain and simple. Pain all the time and it’s sitting there lurking ready to pounce to knock me off my feet. I would not wish for anyone else to have to go through what I do each waking moment of life.
What is accepting that my life is non-stop pain, to be honest, I don't know. Perhaps it’s the realization that it’s a constant in my life like the sun and the moon are in the sky. Yes, it sucks. Yes, I wish I didn't have it but I do and I have to get on with life. I always say that there are people in this world in far worst positions than me. I am forever grateful that I have my wife who has been my rock through this, always looking out for me even when I don't want to listen as I am a stubborn person who wants to do what I want and not realizing the knock-on effects it can have when I push myself a bit further than I should.
So yes, life is full of pain, but you have to make the most of what we can, maybe one day there will be a cure and maybe one day I'll get a pain-free moment but accepting that is likely that there won't has had a positive effect on me and that life is life and I am thankful for what I have.
Mick, I understand exactly what you are saying. I also live with NDPH right along with chronic migraine. I have not had a pain-free waking moment since 2012. Sleep is my only respite, and even that has been terribly impacted by these attacks. I'm sorry you have to live that life as well. You are not alone. Our wives are our greatest advocates! I get being stubborn because I find myself in those moments frequently, lol. The main issue with NDPH is that it is so hard to treat. In my case nothing has ever made any impact on the constant pain. I will say the pain of my severe migraine attacks makes the pain from NDPH pale by comparison. Has your doctor tried trigger point injections or Botox to see if that might help? I've gone that route with no lasting effects. Ice is still my best treatment plan when I'm down. Let me know how I can support you. We can lean on each other! We have some articles that speak about NDPH.
https://migraine.com/search?s=NDPH
Wishing you migraine-free days, Tom migraine community team.
HI
Thank you for sharing your painful journey with us. Tom has given you wonderful information. I'm going to add one more. There is a fairly new non profit NDPHAware.org that has some interesting information I'd like to share with you; https://ndphaware.org/.
Hoping you have a low pain day, Nancy Harris Bonk, Patient Leader/Moderator (team member)
- thanks for posting. Having both migraines and NDPH is a tough road to go down. I do it as well. What I want to tell you is that your pain and plight are seen, and you are being heard. Do know that your pain is valid and that your suffering is acknowledged by many here in the community. Having 24/7 pain is exhausting - boy do we get it.
Having acceptance through the discomfort of daily affairs is key. It is the difference between daily living and living life. It's a mindset that focuses on the journey to and through the hard days with a genuine sense of positivity by choice. It is not invalidating the pain felt or refuting the struggle, but a preference toward feeling the joy and peace in life as you travel this tough road. Thanks for reminding me of this ... your words couldn't have come at a better time. You are appreciated! Rebecca (team member)
