How do You Survive the Holidays Intact?

Nov 26, 2019

There is one sweater in my collection that I knit (and unknit) three times.  Part of the downfall of knitting sweaters is that until they are fully knitted and washed, you aren’t able to try them on and see whether you like the style on you the way you thought you would and whether the one you made fits you well.  In truth, much of the reason the sweater didn’t fit is that I was using a different size yarn, didn’t do the calculations correctly, and the yarn...

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How do You Practice Self-Care?

Nov 19, 2019

Getting sick and never getting well again is like crucible, burning up any extra bit of energy, allowing the pace and demands of life to come into sharp enough focus that we might come to understand the critical importance of self-care.  Perhaps, you were raised as I was, with the belief that self-care was selfish.  Unlearning this belief has been key to my wellness, to my staying as healthy as I’m able – both physically and mentally, knowing that in order to provide any...

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Why am I Tired All the Time but Still Don’t Sleep Well?

Nov 12, 2019

This seems like one of the classic ironies of chronic illness.  Chronic fatigue, it seems, does not lead to being a champion sleeper.  There are many factors – known and unknown, that contribute to our sleep.  While some of the things that are not under my control have to do with my constellation of illnesses and autonomic dysregulation, there are things I have control over, namely my sleep hygiene and I work to sway those factors in my favor.  Are you familiar with...

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What about Sex and Chronic Illness? Part 2

Oct 29, 2019

So, if sex (as referenced in the Part 1 post on this subject), is the elephant in my living room.  I can either eat it, ride it, or keep it for a pet.  Either way I’ve got to get to know it intimately and not avoid it.  Okay, okay, my metaphor is breaking down on me.  But here’s what I mean: our sex lives, no matter how much they may be troubling or confounding us, are never going to improve without us getting up close and personal with as many of the issues,...

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What About Sex and Chronic Illness?

Oct 22, 2019

In the lineup of things in my life that are diminished by chronic illness – sex is in my top three.  I have waited so long to write about it because, honestly, it feels like the elephant in my room.  It’s taking up all the space, but I don’t know how to shift it.  It would be great if I were writing this with some expert tips and were going to “blow your mind” with ideas you were leaving off the table about how to improve your sex life with chronic...

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How do I Maintain a Healthy LTR with Chronic Illness?

Oct 15, 2019

I am one of the luckiest of the chronically ill card holders, in my opinion; because throughout my time dealing with chronic illness, I haven’t faced it on my own.  Prior to getting sick and for the whole time since I have had the amazing fortune of being in a loving partnership.  For almost 24 years now I have had the same, steadfast, and supportive woman by my side.  She has loved and cared for me as a person with and without disabling conditions and I could spend the...

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How do I Accept my Chronic Illness?

Oct 01, 2019

Chronic illness shows up and robs us of our plans.  It reroutes the itinerary we had for our life.  It steals the future we imagined.  It diminishes our capacities and transforms our circumstances.  It kicks our ass and demonstrates with absolute clarity (in ways that many of us are not accustomed to being shown) that we are absolutely NOT in the kind of control we had thought.  What do you mean accept, lady?!  Why would I want to accept the thing you’ve...

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How do You Cultivate a Rich Inner Life?

Sep 24, 2019

In Gabor Maté’s book When the Body Says, “No,” he talks about the onset of some illnesses like cancer and autoimmune diseases as having a traceable connection to the propensity of “stuffing” negative emotions like fear and anger and the compounding toll that takes on the body.  In it, he discusses Stephen Hawking’s experience with ALS.  Hawking, a remarkable human in so many respects; in particular, Maté is looking at Hawking’s...

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How do You Deal with the Isolation of Chronic Illness?

Sep 17, 2019

 Prior to getting sick, I was an extrovert’s extrovert.  I was a people person who got my needs met by being around people.  When my energy was flagging, I was typically recharged by (you guessed it) being around people.  I have basically zero amount of social anxiety.  In fact, if there is such a thing as solitude anxiety, I have that.  As a child, I shared a room with my sister.  When faced with tasks to do by myself, or afternoons when she was gone...

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How did You Get Diagnosed with Chronic Fatigue Syndrome?

Sep 10, 2019

Chronic fatigue, it sounds like something we’re all suffering from, right?  It seems like everyone is functioning on too little sleep, getting by on fumes, hitting the weekend too tired, stressed, and worn out.  Fatigue seems to be an epidemic.  And yet, when I talk about chronic fatigue syndrome, I’m talking about a whole different animal.  It’s hard to clarify for those who haven’t experienced it the difference between the fatigue that most adults...

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