Sharing Pain

I’d never wish what I’ve been going through the past six and a half years on anyone, but one of the worst things about it was feeling really alone quite often. Without my family and blogging friends, I could never have survived. Yet there was still an element missing – I had no one to talk to who had gone through the same experience. Slowly over time, I’d receive an e-mail message about once a year, thanks to this blog or other things written on the topic or through mutual friends. Then I finally decided to go hunting for a pelvic pain e-mail group and I found one, the ‘happypelvis‘ list.

Slowly over the past couple of months, I’ve become acquainted with some of the people on the list and now I finally feel like I have one place I can always go where people know what it’s like to be in this kind of pain, day in, day out, for many years. While it’s sad that others share in this kind of pain, it’s really a relief to know without a doubt that I’m not really alone. I have also received more e-mail recently from people who have found this blog, and each person I’ve connected with and helped has made it worth the time I’ve put into writing on the topic, putting myself out there.

Now today I updated my website, gave it a fresh new look, adding a new logo, and I have updated my blogroll. I draw particular attention to this because many of my new friends have blogs also sharing their stories and I believe it is incredibly important to showcase those blogs so that anyone who visits mine can find as much additional information as possible. I also have other resources in my blogroll and other blogs by women going through rough times from other health and personal issues, but the bloggers who share in this journey of pelvic pain deserve special notice. It’s awful we all have to go through this, and most of us do not live near each other, but at least we can support one another online.

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2 responses to “Sharing Pain

  1. Thank you for adding me to your blog list and for listing some great resources for people suffering with pelvic pain. I was wondering if you might share more either via email or as a post how you got your pudendal neuralgia under better control. I know several months ago you were able to travel internationally. I lived overseas and would love to travel again, but that seems like a distant dream right now. I know so many of us need encouragement to see practically how life might one day get better.

  2. I’m happy to add that here and expand via e-mail if you have more specific questions. Essentially it’s been a long, slow journey with small incremental improvements and a LOT of experimentation. I started out traveling short trips – an hour flight here, 3 hours there, with a lot of rest in-between. I learned a lot of tricks for traveling with pain in addition to my regular pain management. Cushions, the right kinds of clothes to wear, extra meds since if I’m flying, I’m not driving (one plus), that sort of thing.

    But mostly the daily improvements are what has mattered – physical therapy, regular motrin, very slowly increasing exercise (and I mean on a microscopic scale of speed here), watching my nutrition, making sure getting enough sleep is a HUGE priority, getting regular massages. Managing what I do each day to reduce the pain. My doctors have said that keeping the pain down as much as possible is the big focus due to the need to reprogram the nervous system, so that’s the general idea on a regular basis that allows me to have what I consider intentional flares – any kind of outing that I know in advance will cause the pain to increase significantly. It’s a trade-off.

    Then when I actually got around to traveling, I’d always plan a buffer day when I get there to rest, and then when I get home, I expect that I’ll be in extra pain for 1-2 weeks depending on the length and distance of travel. Conferences are the hardest because they require sitting on the plane and then sitting in conference settings as well, plus dinners and such. Jet lag is harder since lack of sleep makes pain worse. I definitely employed caffeine there as a helper. There’s also just a mindset of an expectation of dealing with the increased pain in a trade-off for the sanity gained from traveling and getting away from home.

    One more thing worth noting – there are benefits of travel that are really worth the extra pain – some you might not think about if you haven’t done it. Seeing friends, walking around in airports, new environments, being out of the hum-drum home environment, seeing new places… all of that was always fun in the past, but now it has a greater meaning for me. The trips I take are like traveling back in time in a way, remembering the person I used to be, feeling like an adventurer, a professional, feeling more normal. Of course it all hurts during the process, but knowing it’s just for a short amount of time somehow makes it more bearable than the pain that comes from being at home. Does this make sense?

    I hope you can find a way to do more traveling soon! I’m not planning any overseas trips again for a while because of this new foot injury, but I sure do have the bug to try as soon as things calm down again.

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