Sometimes It’s One of Those Times

Sometimes, life just vomits in your lap. One thing after another goes wrong, and you feel like you’re juggling roaring chainsaws while pedaling a unicycle.

Or maybe that’s just me.

2013 has been challenging, to say the least. I’m fully aware that things could be much much worse, but it has been a struggle to keep my spirits (and those chainsaws) up. ME/CFS advocacy has been a whirlwind this year, from Public Citizen to the FDA meeting to becoming an FDA patient representative to monitoring the CFS Advisory Committee to researching what’s happening at NIH. All of those efforts have required time, focus and energy. And then there’s writing this blog. My goal has always been to post twice a week. I have a loooong list of posts I want to write, and I even mapped out a schedule through the end of July. On top of all that, two people in my family have faced potentially life-threatening health problems this year.

I’m not sure how much longer I can keep my balance on the unicycle with the chainsaws.

I guess everyone faces times like this, where life has gotten so crazy that you have to come up with a new approach. The threshold is lower with ME/CFS though, because stress is so toxic to our bodies and because our limitations are so severe. I simply cannot write as much as I would like, or take care of my family the way I would like. I have to keep reminding myself that I am, in fact, disabled and I can’t keep imposing full-strength expectations on myself. The best way to lower your stress is to lower your expectations.

I need to give myself a break, and catch my breath. I need to reorient. I need to rest. This blog is a high priority, but I may not manage two posts a week. I have many more requests for my time and energy than I can fulfill, so that means saying no to someone. And I have to design a sustainable way to move forward. I still haven’t learned to be patient with my limitations, and I hate confronting that part of my reality.

I guess this is just a long-winded way of saying that this is one of those times. Everybody has them. It’s tough. We get through it.

 

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13 Responses to Sometimes It’s One of Those Times

  1. Tom Kindlon says:

    Sorry things are rough for you, Jennie. I’ll be interested in your articles whatever their frequency.

  2. Sally says:

    Jennie – You have done so much for the ME community world wide. If you need to pass the baton on then do so with a clear conscience…. or even if you just need to let some one else carry it for a while, then everyone will understand. Hope you get some good rest now and that the chainsaws can be safely left to one side for a moment…. Oh and maybe get a recumbent trike instead of the unicycle… πŸ˜‰ Best wishes. πŸ™‚

  3. Sasha says:

    Take a break, Jennie! You’ve earned it. And you’ll get more done in the long run if you pace yourself!

  4. Amy S says:

    The cruel irony is that what helps motivate and drive you also depletes you. An impossible edge (ledge?) to balance on. We’re not going anywhere, so you do what you need to do for yourself, when you need to do it. And let us help if we can.

  5. I really value your blogging, but you are valuable even without it! I’m not sure if this will help but I don’t always read all your blogs because its just too much information to take in! Less regular blogs might be more appropriate for some of your cognitively challenged readers!

    I hope you can rest up for a while and look after yourself. lots of Love x

  6. Melissa says:

    Jennie, I’ve always been a bit perplexed at how much you manage to accomplish given your limitations. I would love to see you take a break…….you’ve earned it!

  7. Milo Paradiso says:

    Definitely, Jennie- expectations, especially your own can be killer especially when you cannot keep up and when life happens.
    The readers, they will adapt with what you can provide. A lot of us are sick and we get it.

    Thank you for being here and to write. I expect nothing, I will read you when the posts happen.

  8. Anne says:

    Jennie, you work is amazing – so important and so appreciated, but of course balancing health and loved ones comes first!

    I agree with the others, we will read your posts and be grateful for them whenever they happen, and we appreciate your unmatched advocacy at whatever frequency.

    Thank you for all that you do!

  9. Sue says:

    Jenny, I love your stuff, but you have to take care of yourself first.

    And you’re not alone, I am juggling those same chainsaws and ducking the vomit at the same time πŸ™‚

    We’ll both get through it!

  10. I think the message is loud and clear from all of us who treasure you Jennie. We are so grateful for all you’ve done to advocate for us but we all want you to make your own health your first priority right now. Having blog myself, I understand the pressure and I don’t even aim to post twice a week. It’s a source of stress for me — worry that I’ll run out of things to write about and worry that I’ll be too sick to write it even if I think of something. And then, when I get an article done, I feel so good.

    It’s that dilemma we all seem to face: the things we love to do the most are often the things that exacerbate our symptoms. So, I hope you can find a middle path — maybe for now post once a week or (as I do) every 10 days or so. I’d rather you feel better than push yourself to keep up the blog at this point. I can tell by everyone else’s comments that they feel the same way.

    • Jennie Spotila says:

      It’s hard to be despondent in the face of the encouragement, support and love that you and the other commenters have offered so freely. THIS is why I push myself so hard: because all you wonderful people deserve so much better than this disease delivers. Thank you, from the very core of my soul, for allowing me to share the journey with you.

  11. Janelle Wiley says:

    take care, Jennie. really appreciate all you do and I hope you get some rest. no need to feel badly about that.

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