What’s in store for me?

I’m part of quite a few groups on Facebook that are for people with my particular chronic pain conditions/illnesses. They have been a huge source of comfort for me to know that I’m not alone in this. And is also a good source of information to find out about medications and things that have helped others. My favourite group is one for my main problem, New Daily Persistent Headache or NDPH. It’s a small group of under 200 compared to some of the other groups I’m in which have over 1,000 members.

Yesterday on the NDPH group someone posted that it was their headaches 7 year anniversary. Now I’m nearly at 3 years and 8 months. But there are people on this group that have had NDPH for 10 years +. What’s stopping me from becoming one of them. That in 5 years, 10 years time I will still be in pain. Is that all that’s in store for me?!

There is no cure for NDPH, and very little management and treatment for it. What if all my future has in store for me is to live like this forever, that I never get better. Because I’m not sure if I can handle that.

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3 thoughts on “What’s in store for me?

  1. I don’t have NDPH, however, I suffer from several other chronic illnesses that cause me a great deal of pain. None of my diseases are curable. First you have to find acceptance, which is not easy and I still struggle with this myself. You have to learn to live with it because we have no other choice, well I guess there are other choices, but they are not good choices. I’m learning to live one day at a time. Live in the moment. I think I’m doing better with this, but I still have relapses and days where I don’t know if I’ll be able to handle it. Therapy, lots of therapy is what’s helping me at this moment. Having a good support system is also very important. Once again, I’m sorry that you have to suffer. Remember that you’re not alone in this horrible club. Hang in there, as there are ways to learn how to cope. I hope you, at least, have some days that are better than others. I know it is ever so difficult because most people don’t understand our suffering. Good luck.

  2. Hi Sian,
    Good on you for reaching out and sharing your experiences for the benefit of others! I am interested to learn about your situation so that I may be able to help others. How many days of the week do you take pain relievers for your headaches?
    Kind regards,
    Phil Spyrou (B. Pharm)

    • Hi Phil,
      I take no medication for my pain because nothing that I am allowed to take has any effect. Over the counter medications do not have any effect and neither do Triptans, stronger medications like opiates I am not allowed due to being on a waiting list for surgery that requires you to have not been on opiates before.
      So in other words I just suffer through the pain as best I can.
      Sian

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