Miraculously recover or die. That’s the extent of our cultural bandwidth for chronic illness.

Dear friends and other interesting creatures,

The above quote is from S. Kelley Harwell.

Btw, when you read this, remember that everything good I have done, I did with these issues alongside me, just as everything crappy I have done. I’m still just me.

Living with chronic pain, fatigue (mentally, emotionally and physically) striving to be a loving, supportive wife, involved, caring mother and blossoming DIVA with many roles attached, is a challenging task. Sometimes I drop the ball all together.

For those late to the party, I was diagnosed as having Bipolar Disorder when I was 14 as well as Generalised Anxiety Disorder. At 28 I was diagnosed with Ankolysing Spondylitis which most woman in my family has (including my 16-year-old daughter). At 37 years of age, Fibromyalgia joined the party. The following year I stopped working in a corporate setting. Social Media found me and we have been in love ever since.

Sitting for hours is impossible for me. It feel as if someone used me as target practice. I have a blade stuck between my shoulder blades. I can’t dislodge the stupid thing.

A combination of meds is in place to make life as productive and dull ache instead of stabbing pain as possible. The bipolar part is very much stable with medication, anxiety remains an issue but living a life of not overstepping my physical limitations are much more difficult.

I am HUGELY thankful for my husband who does his best to provide me with medical care, cooking a roast dinner and rubbing my back like he did yesterday. I don’t think it is easy to live with anyone who chronically is in pain, or has an illness that always needs consideration.

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My lower back makes itself known if I am in one position too long. Bending forward, carrying grocery packets, all simple tasks that equal pain.

My body pains. My legs, arms and hips just hurt. Nothing happened to them. They have an illness onto themselves.

One of the most annoying, irritating and completely insane things, is the pain and lack of grip in my hands. There are days I cannot grip a pen, open a water bottle or pour from a jug. Holding a phone, a book or even typing on a keyboard can become impossible. I hate that!

The entire combination of symptoms leaves me with no point of escape. It is completely without warning for the most part. Ta da! I have great intentions but my body does not necessarily agree.

Then, there are times I am just dandy. The pain becomes dull and doesn’t consume me. Medication controls, and I am awesome. My mental state is without any issues, my body is playing nicely and in those moments…. hours, days, weeks, or months… I get a huge amount done. I’m running around and living it!

Unfortunately, the entire process is very unforgiving. For an awesome few days where I run flat out, it may take two weeks to recover and return to dull ache status.

Best part, I look fabulous to everyone most of the time. Oh yes, I’m the great pretender. #wink

I wish you enough,
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Me and Godfrey and the friend who died.

Dear friends and other interesting creatures,

My very first internet friend I made was almost two decades ago, Belinda Norman. She lived in Cape Town and we bonded immediately.  For years to come we would e-mail our excitement and heartaches through life events,  our laughter and our tears. We met up in person a number of times.

Initially we did the Bar-Bee & Wenchy show on ###SouthAfrica on Internet Relay Chat. Our humour was one and we fed off each other.  I can honestly say that our times together was always filled with laughter,  even during sad times.

Over a year ago,  Bee died. I remember the initial tests and her saying it’s probably nothing. Bee was a year or two older than me and we are too young to die…  Tra-la-la! I hate cancer.

Over the months that followed we have all continued to post on Belinda’s Facebook wall.  I saw Godfrey Johnson had left a message too.  I had seen him with my friend Wilhelm at a show with Pieter-Dirk Uys,  “Bambi” and wondered how he knew Bee. I sent him a message and it turns out Belinda and Godfrey are related.

A couple months ago,  we literally bumped into each other in the local Mall. Turns out Godfrey had relocated to Johannesburg and lived across the road from me.

Being in the arts, we had interests and people in common…. besides sometimes Godfrey’s facial expressions would so remind me of my friend. So reassuring. It felt like I could close my bubble around Bee because Godfrey knew her too and understood.  I felt relieved, I didn’t hurt alone.

For the past couple of months we have met in the mall numerous times,  later changing it to “quick” visits at my home which is never quick. 🙂 

I’ve been able to introduce Godfrey to some people and places he didn’t already know, and he in turn introduced me to his fiancé and bits of theatre knowledge I lacked. He connected with my kids and my husband. Together, we just work.

I am very grateful.

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My dearest Godfrey,

So superbly talented you are.  Last night at @LALT_JHB I could feel the audience rise and fall with your interpretation and arrangement of music. Your pause and your humour.

I listened to the soft voices singing along around me and again was astounded by how a performer connects and draws an audience into the world created for them. 

You were so,  so,  so very beautiful to me.  Thank you for your friendship,  love,  humour and the platform to be real and never judging.

It has been a treat having you nearby and getting to know you and darling Nicholas. 

…. my Love to the fish!

I wish you enough,
Wenchy

I know why the caged bird sings.

Dear friends and other interesting creatures,

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Behind this Wenchy who rose again are an army of kids who sometimes literally picked her off the floor…

… a close group of friends and family who supported, loved, laughed, cried and faithfully promised to bury those who trespass against her in an apple orchard.

Most importantly, a life filled with people who humbly recognise their own humility, forgave her as they hope to be forgiven for the silly things they do,  keeping no record of wrongs, and provided comfort to her …. eventually a man came who gave her hope again… on a mountain top where you could see forever.

…. and a God who holds it all in the palm of his hand.

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I wish I could say I don’t depend on anyone,  but that not true and not who I am.

I depend on dozens for countless many different things, on so many levels and in layers. Emotionally, practically, physically,  mentally,  financially and psychologically.

I’ll never walk alone, which means you will never walk alone.

I wish you enough,
Wenchy

Tonight our hearts drown the distant drums

Dear friends and other interesting creatures,

I listen to the things my many children, husband and friends speak about, the way they see the world and experience the people beside them….and I reflect on my own long and cobbled stone road.

The universal pull is that people want to be loved, wanted, appreciated, listened to and acknowledged. We want to matter. We want to fit in, yet be our own person and march to our inner pan flute. Stuff that, I hate pan flutes…. the sound of a lone saxophone. That’s what I choose to be….. and we have music all right.

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Lonely. I have seldom felt more lonely than within a group of people. Sometimes they are pan flutes, some even play the triangle. They are lost to the sound of the saxophone. I don’t mind being alone. On my own. I’m really smashing company. Especially at 3am.

After I did my Radio Today interview, I felt utterly naked on a foreign stage to be judged. Bare. I’m not sure how I expected to feel, because nothing I said was different to what I would write or speak about. You can listen to the podcast:  HERE

Oh and do people love a small public lynching amongst themselves!

I totally forgot the topic as my mind ….. wonders around interesting spaces all the time. How great others would have done, never been in a studio before… “here is a microphone love, knock yourself out“. Well, I admit, while I truly enjoyed it and I would do it again in a heartbeat, I have learned a number of things during my 22 minutes on air. There are things I would do  very differently. Some technical, some behavioural, breathing would be good and not mention nymphomania in the first five minutes may be a stretch… but at the end of it, I always want to be unashamed me….and that I was. True to me.

Why do we all want to fit in so badly? We want to be ourselves. Okay forget the pan flutes you can all be drums if you like, but … “Please… oh do like me and and add me or send me an invitation to the A list of bloggers / school lunch break cool group / geek group / social outcast group / social media supreme luncheon / media drops / influencers / interesting creatures list. Just don’t leave me out here… with my nose pressed against the window looking in.” Love me. Care about me. Don’t exclude me. That is what we ALL want. Even the bad asses. We want to fit with someone or something…somewhere.

Did you know… there is no medal at death for being part of a herd? None. Well, none that any near death experiences documented that I have read, spoke about. Bright light and peaceful I’ve heard… even harps (right up there with pan flutes – save me!) but no medals. No reward. Not a pat on the back.

“Oh you were a fantastic herd person. Just stand in this line… no, oops ….sorry, wrong line, you were not an interesting person .. frankly we do believe you died while you were still alive. You were a mere flute… Our mistake… off you go.” tra-la-la (Bee I hear you now!)

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We really need to stop apologising for who we are and embrace ourselves. Nobody can be a better you, than you can be! Nobody is the world knows you better! Okay… maybe God and the Devil. I do believe they make it their business to know. Well, the Devil does. God already knows your details before you were born,… it is not God’s fault if you wanted to be a flute.

If you must, … rather play the triangle. At least we remember the triangle! …. but there is NOTHING like a lone Saxophone.

a cry that tells us love goes on and on
played on a solo saxophone
it’s telling me
to hold you tight
and dance like it’s the last night of the world
– Miss Saigon

I wish you enough,

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Jokes about menstrual cycles are not funny. Period.

Dear friends and other interesting creatures,

Seriously.  When can this period thing end now? I’m really toooo old for this crap.

My lovely gynaecologist replied that I could easily have four more kids. Did he forget he already delivered a fair amount of children from my womb?  Or that I am 42 and the meaning of life hasn’t arrived? (I may have resentment issues about that) Awesome “in shape reproductive system” I have…. besides that so far, while my kids are loved more than they will ever understand, I’ve happen to have passed on some really awesome genetic illnesses. Besides that I do not want to raise a baby all over again. I have zero patience. If the baby could stay a baby baby size for a very long time… that would be super cool! Love tiny babies.

Telling you, my forefathers were kick ass Portuguese pirates who ate delicate French cuisine until a great,  great,  great grandfather Kruger found the coloured help enticing (our family tree branch – a lot!). The Bible does speak about “the sins of the fathers to the 3rd and 4th generations…“… I am sure these sins were diverse and they probably thought they were having a great time. We love Ankylosing Spondylitis and the depression / anxiety combo is a great treat guys.

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Please take my writing with a pinch of salt,  I’m well aware of repentance … yet I hope one day God will explain to me why some believers suffer so greatly.

Also, my friends will know this post does not make light of infertility at all. That is a different kind of hell all together. One I was obviously not strong enough to handle. There is a special heaven in my heart for moms who have difficulty with conception, or give up their babies for adoption and adoptive parents.

I wish you enough,

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