Those Spoonie Blues

July 12, 2018

You know what it's like.  Your treatment is working, life is going by, you're feeling like (maybe) you're getting somewhere....then BOOM! 

 

It's back, a flare...or is it?  Did my treatment stop working, is it "just" a garden variety flare?  Is it going to get worse?  WHAT IS GOING ON????  And down the rabbit we go.

 

I once had a 6 month remission from psoriasis and PsA.  For 6 glorious months, I didn't worry about losing my hair, scales falling out of my nose or being able to put my pants on.  It was delicious.  It was incredible.  It was the only complete remission I had ever had to that point (or since) in over 22 years.  But, man, it was 6 short months.  And then it all came crashing back, with a couple of add on conditions just for fun.  And that was 3 years ago.  

 

Honestly, I am thrilled at the serious Badass I've become in the quest for care, treatment and in research for the cure for psoriatic disease. I so enjoy spreading awareness, for the NPF, the Breakthrough Crew, the Arthritis Foundation and 50 State Network.  I love mentoring, I live for Capitol Hill Days, and I am totally in love with fundraising for the NPF.  I am disabled, and my life's goal is making the psoriatic experience a little bit less traumatic for others than it was for me.  I take as much as I can in stride while making jokes about whatever is ailing me most.  But man, the last 8 months have been rough.  I was in the hospital, I got diagnosed with Transverse Myelitis (or early MS, depending on which doctor you talk to) and chronic migraine, as well as Optic Neuritis and NMO, which have wrecked havoc on my eyesight.  

 

Those of us with chronic illness are many times more likely to suffer from depression and anxiety.  Seriously, our bodies are attacking us, right?  What do you do when your own body hates you?  How do you explain that to someone?  At least with my Psoriasis, people can SEE that something's wrong.  But the rest?  I can't even get my doctors to agree on what's wrong, how can I explain it to anyone?  I sound like a hypochondriac nut job.   And now, of course, the dreaded flare.  My bald head, the pain, my joints, my nerves, my fatigue, my frustration?  It's invisible, but it is everything.  And it is bad, bad bad for my mental health.  

 

Depression is insidious.  It starts with that flare, and the next thing you know, you have moved away from the things that give you pleasure.  For me, that is volunteering, advocating, being a mentor and Pretty Flakey.  And when it's awful just to try and get out of bed, your head is pounding and your scared to death of what is going on, and what's going to happen next, it wears ya down.  But I stayed down.  For over 6 months.  I didn't "feel" like I was depressed, what I felt was desperate.  Desperate to stop my pain, to get some good rest, to get rid of the stinking fatigue and get on with my life.  And every dead end and dismissive specialist just wore on me a little more.  I forgot the first thing I tell every new mentee:  "It won't be this bad forever."  So it's time to take my own advice and buck up.  :).  Because I can live with pain, but not without purpose.  I can't be sad every day.  I can't stop interacting with my friends and doing the things I love.  

 

Because depression just sucks your will right out of you, and you never even see it.  I had no idea I had put so much on hold, and just because my mind is getting better, it doesn't mean my body is going to follow.  So I'll do what I can.  There is a happy medium somewhere between my body and my mind, and what each will let me do.  One thing I know I'm doing is the best I can to kick the Spoonie Blues.  I don't say this for sympathy.  I say it because we all struggle at one time or another.  And I want to thank everyone that has stuck by me and shown me the love.  Because it woke me up.  And I love you back, you Pretty Fabulous Flakes!!!!

 

Have you-or do you- suffer from anxiety and/or depression and want to chat about it?  I am always happy to have a conversation, I am here.  For you.  Because we all need a friend from time to time.  And mental health is NO JOKE!!!  Our minds need to be and stay healthy, because we are Spoonie Ninja Rockstars!!!  And the most important thing to remember: 

                            YOU ARE ENOUGH!!!!

 

 

 

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