Ehlers-Danlos mama trying not to twist things up *too* much!

Monday, January 10, 2011

Staying Well When Life Goes Wrong

People who know me in real life would probably laugh at the thought of me writing a feel-good blog post. I'm not a negative person, per se. I'm just, well...intense. Passionate.  A hell raiser. I'd like to think of myself as injustice intolerant.
Recently, it seems many people I know just haven't had a break--whether their troubles are their own health, that of a loved one, financial difficulties, grief and loss issues or some combination. Beyond that, there have been a number of devastating events reported on the local, national and international level. Here in New England, it's bitterly cold, which only seems to magnify the pain.
But while I could probably give a million reasons NOT to be happy, I'd actually like to change focus--not to the million reasons to be happy, but to the importance of taking care of yourself when nothing seems to go right.
I know, I know--you've heard it before. It sounds hokey. And the fact of the matter is, I'm no expert on the subject of self-care, self-soothing, etc. You could Google either of those terms and probably get lots more ideas than I will provide. But here's a reminder to do it! Do something nice for YOU. Do something that makes you feel better and be ok with that.
Want ideas from a twisted sister? Fine. These things help me:
·         curling up on the couch with my Snuggie and watching something completely mindless
·         taking a bath
·         playing around with photos on Picnik
·         drinking coffee, sometimes even flavored
·         looking through/organizing old photos
·         sleeping
·         reading the Onion, finding articles with stumbleupon
·         finding new blogs, feeds to read
·         buying new socks--especially patterned!

Again, find something for YOU. Find something that makes you feel better and schedule it into your day. Make yourself a priority, even if only for 15 minutes. And if you're able to get physical activity, I'd highly recommend it. I was a competitive swimmer for many years and being in the pool improved my mood like nothing else. And even after that, before my body really couldn’t hack it, I felt better after getting out of the house and running. Or walking. Or hobbling.

Also, for those of you with chronic pain or fatigue, I cannot express how important it is to maintain human contact. As hard as it can be, especially on a bad day, to pick up the phone and call a friend or a relative, it can make such a difference. I love spending time with my best friend because it helps me forget about everything else in life for a while and just feel normal. Even if you don't feel like calling anyone you know, make a point to go out in the world. Smile at a stranger. We're all in this mess together.

When people don't seem to understand us or our children or our situation, it hurts. Sometimes it's easier to avoid talking about the difficult topics than it is to confront the people in our lives who mean well but just don't get it. (This sort of gets into that whole, "But you don't look sick..." issue, which I’m also not the authority on.) It takes time. I was diagnosed with EDS 11 years ago and it's still a work in progress. I'd like to believe that people have the best intentions. I know that my own independence (and stubborness, and shame...) is often what forces people to keep their distance. I also know that when people are so upset by a situation (e.g. the death of a child or the illness of a once-strong adult), they react in ways that seem counterintuitive: by shying away rather than embracing, by remaining silent instead of comforting. Humans are odd, imperfect creatures.

So again...if you're struggling right now for any reason, please know that you're not alone. Take care of yourself, allow yourself to be cared for and if the burden is too much ASK FOR HELP. It's ok. It doesn’t make you weak to need someone. It makes you human.

I don’t know why I felt so compelled to write this instead of sleeping, but I really hope that someone reads it at the right time.

Hang in there and keep raising hell!! You’re all in my thoughts.

Cyber-hugs from the non-hugger,

After re-reading, I thought I should also note:
If you [or someone you know] are really at your end and feeling as though you may hurt yourself or someone else, get help NOW. A mental health emergency should be treated like any medical emergency. Call 911, emergency services or get to an ER or mental health emergency service location. Need to talk to someone first? In the US, the National Suicide Prevention Lifeline is 1-800-273-TALK (8255). I'd like to think that life's worth living, despite all the hard stuff, but sometimes it takes a little help to get there.


  1. Kudos on this great reminder! I have spent the last year trying to learn to pamper myself a bit, after coming to the realization that stress really contributes to my pain by causing muscle tension. I'm getting a bit better at it... but I'm still not so good at the "ask for help" part! Maybe I'll master that one this year!

  2. Awesome post, with some amazing tips =) Thanks for this!

  3. and as for new socks... ever been to BEST SOCK SITE EVER! I once sat down and figured out that I could EASILY spend $150+ on that site on socks and thigh highs I'll settle for buying a pair or two here and there with the free shipping instead hehe =)

  4. Chiming in late. . .Heh heh - I totally get the socks thing. Seems if your feet are relaxed, everything else is good. Thanks for these comments. I've been struggling (2 surgeries this year already) and am perplexed by family/friends' reactions. Seems they are afraid I am contagious or something. Glad to know I'm not the only one! Take care!

  5. @BendyClutz & StipeyGirl--Welcome! Glad to find I'm not alone in my sock love. Hang in there with your fabulous feet!

  6. i too am an injustice

  7. @Courtney: Fabulous! There should be more of us. But seriously, I think if more people saw injustice as intolerable and spoke out about it, change would happen.