Sunday, September 18, 2011

Just Keep Swimming...

Patients For A Moment (PFAM) is a patient-centered blog carnival to build connections within the community of people who blog about illness, disease, and disability. Brittney, at The Road I'm On, is hosting the next edition of the PFAM blog carnival:  "What do you do when something you thought you conquered comes back? How do you deal with the change, accept that what you thought was gone for good isn't, and get back to the positive side of life?"

This topic couldn't have come at a better time because I'm currently dealing with this in my life.

I know that I'm going to struggle, at least to some extent, with my illness for the rest of my life (I'm not sure I've fully accepted and embraced this, but I know it). I'm hoping to be able to get things under as much control as possible, so that I can live as close to a 'normal' life as possible.

Now, I can't say that my life was in any way 'normal.' But, I felt like I was on the right track. My husband and I had moved back to Texas (near our families... and doctors). I was starting to be able to do a little bit more around the apartment, and spend a bit more time with my family (though still definitely much less than 'normal'). And, then, everything tumbled down...

Things have been really rough for me over the last few weeks. It's been a pretty big set-back, but I'm really trying to just remember that things will get better. I've kinda gotten used to the 'one step forward, two steps backward' process that tends to be prevalent in chronic illness. It's difficult, but I have to be very deliberate in my thinking, in order to remind myself that things will get better.

I think that part of the challenge is that a false sense of stability forms, when someone that is chronically ill experiences even a short amount of time functioning at a higher level (even if it's only minimally higher). Having even the smallest taste of 'normal' can trick your mind into thinking that things have changed permanently. But, having a chronic illness doesn't work like that. There will continually be ups and downs. You just have to learn to cherish and savor the ups, and trudge through and survive the downs. Much easier said than done... but it's an important thing to work towards. So, when life gets you down...  just keep swimming...
by midnightheartache

NHF Regional Conference - Part I

"The National Headache Foundation (NHF) exists to enhance the healthcare of headache sufferers. It is a source of help to sufferers' families, physicians who treat headache sufferers, allied healthcare professionals and to the public. The NHF accomplishes its mission by providing educational and informational resources, supporting headache research and advocating for the understanding of headache as a legitimate neurobiological disease" (NHF Mission Statement)

"The National Headache Foundation will be the premier educational and informational resource for headache sufferers, their families, physicians, allied healthcare professionals and health policy decision makers. The NHF will advocate for the headache sufferers. The organization will employ the most effective means to disseminate information and knowledge to headache sufferers and non-sufferers" (NHF Vision Statement)

My husband and I attended the NHF Regional Conference, Bridging the Gap Between Patient & Clinician, yesterday in Dallas, TX. So, I'd like to pass along some of the things we learned at the conference.

Serene Branson was the keynote speaker. She shared about her on-air migraine attack that happened in February. She has partnered with the NHF to help educate others about migraine.

There were several doctors there that spoke about related topics. Please join me over the next few days, as I share some of what each of them covered (it may not be new information, but it's always good to refresh and return to the basics).
Disclaimer: Nothing on this blog is intended as medical or legal advice.

What I write on this site is my own, and if it is someone else's, I take special care to attribute it to the original author. So, please don't use any of my material without proper attribution or permission. Thanks.