Monday, October 20, 2014

Hope is not lost... Relapsing

One of the hardest aspects of TSW is having your life hang in the balance.  No planning, not knowing how you'll feel tomorrow.  Not knowing what your face will look like when you wake up-  assuming you actually get sleep- and the devastating blows of an unexpected setback.  Having all you've worked for gone overnight.  

In the early months of TSW life is overwhelming and debilitating.  A Groundhog Day of hellish symptoms emotionally, mentally, and physically kicking your ass and spirit every waking moment.  Relentlessly and mercilessly beating the strength and dignity out of you.  Deteriorating health and repulsive, excruciating, and alien symptoms become your normal and, if you are the majority, they become your identity.   "What hell will I endure today?  How much more disgusting can I be?"  It is awful!  Painful!  Disgusting!  Unending!  Your life is misery.  Just as you accept this will never end for the millionth time, an almost unnoticeable sliver of light melts into the edge of your darkness.  The thrashing winds calm to a breeze.  The waves sway and stop crashing.   And huddling in the new light, clinging for dear life, is the Hope you thought was gone for good.  Small improvements are welcomed with relief.  SLOWLY.  Very very small improvements are made.  While the horrible declines come swift and strong, every ounce of improvement is delivered a drop at a time to be savored, sipped, and cherished like a drop of rain to a desert plant.  NO healing comes quickly or easily.  No healing is to be taken for granted.  

After the physical healing starts, the emotional wreckage becomes clear.  Your bruised and battered soul now needs attention.  The trauma of what you endured wreaked emotional havock and the next mountain to climb is getting back into the world without crushing anxiety and agoraphobia.  And trust me, this is hard, too...  Very hard.

As that lost confidence and energy become SLOWLY replenished, a day will slip in where you feel OK.  The itch not so bad.  The burning not so intense. The oozing dried up.  And then another day... And another!  Calmer skin.  More sleep.    Ever so slowly rebuilding what was lost.  The broken pieces of your body, mind, and soul start to find their ways back together.  Piece by piece.   It gets easier to go out.  Less preparation  is needed to take on life.  Trips to the grocery store become just that, not a test of mental strength and deep breathing exercises.   What you see in the mirror becomes more predictable and more...YOU... and planning life resumes!   "Sure!  Let's plan that for 2 weeks from now". You start to feel like you're getting your life back.... You feel moments of "normal."   Life is good again.  Life feels like life. 

Now, a common mantra or theme of TSW is "expect a flare just around the corner."  We all anticipate, think, and worry about the possibility.  We hear fellow comrades temper our happy days with warnings of possible storms ahead and we wisely say, "oh, I know!  A flare is inevitable and just around the corner."  You believe this to the core of your being and feel like you're prepared... until it actually happens.  Like a Louisville slugger to the gut, another flare.  The flare could be mild and last a day, but in that flaring moment you just don't know! All you know is how horrible you feel and, like a war veteran, the anger, sadness, and grief take over because you're brought back to that awful place of uncertainty. The groundhog hell.  Ground zero.

The weight of the emotional devastation and fear of just how bad it may be thrusts itself to the forefront of you mind and blocks all other thoughts and emotions.  Fear of losing what you've worked so hard to gain strips all reason and calmness.  Remaining optimistic proves nearly impossible because, during a flare, ALL you know is the hell.  The loss.  The sadness.  The only clarity is the uncertainty of what you're about to face and that is SCARY AND HARD AND YIU HAVE NOTHING LEFT.  You break down.  You rack your brain for what may have caused it and then you eventually accept the hell  that is your normal again.  Back in the pits.  The cycle begins again.

The current state of my skin is deteriorating and I'm experiencing things I haven't experienced in MONTHS.  Hell is becoming my new normal again and after being devastated and emotional for the last several days, I'm now putting that behind me and canceling plans I had and letting people know I can no longer be relied on...and I HATE being unreliable.  I am back on ground zero.  My husband is back to missing work and being my nurse.  My family is back to taking shifts watching my children.  I'm back to being bed bound.  For how long?  Who knows.  It hasn't reached the intensity of my first 3 month flare, and I'm hoping it won't, but hope is just hope.  Something to cling to through the raging storms of hell.  I'm back to ooze, crust, and immobility of my neck.  With that comes headaches from stiffly holding my head so my skin doesn't tear when I move it too much.  My ears are hot.  My skin is hot.  My scalp is hot.  Hell.  But my war torn and shaken friend Hope is not lost.  He's still fragile and a bit unreliable, but not lost.  I would spend my next few paragraphs talking about the guilt I feel for not wanting to be around my kids and the shame I feel for bringing this difficulty onto my family, but that's another day, another blog.  For now, it's acceptance and hope.

If you are going through this, you are not alone.  And I have one recommendation! Get on the and TSW Facebook forums and reach out!!  These people have saved my life.  They know and understand my pain like only we can.  They are living, have lived, or will live their own versions of this nasty, brutal and unrelenting hell and their words of encouragement and wisdom are the ONLY reason I haven't relapsed and used steroids again.  Or slipped into a dark and powerful depression.  You know who you are and I love you.  Always.

If you have questions or would like to talk please email me:

"If you're going through hell, keep going"
Winston Churchill 


  1. Thank you sooo much for your heartfelt post Jen. Love it and you so much because you speak the words that many of us feel with such strength, honesty and beauty, Not that TSW is beautiful but - that you can go to that place inside of yourself and transform an all encompassing grief, anger and despair into acceptance of what is for the moment ( enduring or fleeting) is a miracle in itself, and a massive inspiration for me. I know 'hope' feels fickle sometimes but I truly do hope with all my heart that this whammo flare is short lived. Loveya xx

  2. I have another mantra: healing is just round the corner. I remember wise advice at the beginning of my TSW to take one day at a time as the skin can turn around so quickly. I never realised the value of taking one day at a time until then, I would struggle through the day and hope that tomorrow would be better. Sometimes it was, but even if it wasn't, I would battle on until I felt better.

    I love the calm that comes after the flare. It helped me to view flares as necessary "medicine" that would leave me with better and better skin each time.

    Jen, you will have bad days and good days, but we are here to support you and help you through it because we understand how it feels.

    Keep positive and keep looking forward. X

  3. That was a brave brave post to write, Jen. This is an insidious condition, made worse by its complete and utter unpredictability. But we will get better. I'm finally (fingers crossed!) coming out of a hellish two year anniversary flare and have had white skin all week (minor rashes but ah well). I was in the depths of misery (and some serious "let's end this life" kinda moments in there) for most of the past few months but it IS turning around again. One foot in front of the other. Keep fighting!