Nocturnal Wenchy

Hello stalkers, since I may have no readers left I haven’t blogged in so long, 🙂

One thing that really annoys me about being ill (I have Ankylosing Spondylitis with a side order of bi-polar and anxiety just to keep things fun) over a long period of time is how you are perceived by others… even those close to you because you LOOK perfectly fine.

Because you are not well and you are on medication, some days is better days than others. So some days you may have better endurance than others.  Because you are ill does not mean you have become an illness, you remain your own flesh and blood individual who wants and needs everything you had before.

You don’t suddenly stop colouring your hair because you have an incurable illness. No. You don’t stop having sex because your bones are fusing. No. You don’t. Your kids don’t suddenly start driving themselves to school. Nope. Dinner doesn’t magically appear. You may need help with things you didn’t need help with before and it’s not every day either.

Unfortunately there are changes that you have to make to adapt to your new “lifestyle“…. (okay, look… some days you are in so much pain you feel you have no life and PJ’s are not stylish) for instance, I can’t open a bottle, my car door or the boot of my car because my right hand doesn’t function well. There has been moments where I couldn’t staple a document together, turn a tap, roll down my window (no electric window in my Jetta) or type minutes for work. (Btw, my left hand is in good shape lol)

Sometimes I need help to walk up and down the stairs (I look like a 90-year-old in the shade with really flashy hair) and other days the meds allow me to look perfectly wonderful….. It is all just so bloody unpredictable. I can drive my kids to school most days because I don’t have a choice. Noid is of the opinion that working is also a choice and you must just get cracking…. mmmm dropping the kids is an hour in one position. Then I need to lie down a bit, stretch on all fours when nobody is around as I look way unattractive. I watch TV in one position until usually either my neck (a stiff, sore neck that I couldn’t get comfortable for my five hours at work is the reason I looked for medical attention in the first place.) or my right leg starts hurting, then I need to realign again. I can do things for short amounts of time… standing or walking my lower back starts first and it moves its way up to between my shoulder blades where it feels an axe is stuck.

As I sit here, I’ve had to adjust my position twice in less than 15 minutes with my left leg just not settling in a non painful position.  It is bloody annoying.

Last night we all went to Greenstone as the kids were meeting friends and going to the arcade and have milkshake etc and Noid and I was there to meet a man about my anniversary gift. 🙂 (more to follow in a couple of days). It involved walking which wasn’t far or allot and yet, I was sweating in pain? I am shocked and frustrated at the short distance I am able to walk without wanting to please stretch out, lie down, take pills and beg for mercy. I HATE THIS. (Okay so I am still dealing with the accepting part of this)

As things would go, a couple who works with me (and who isn’t very fond of me), walked past. All I could imagine them saying was how I LOOK perfectly fine, WHY am I not at work! My hair is proper, my nails are done, I was wearing lipstick! In reality I was walking very slow, (which is a tad irritating to Noid) and I had taken pain pills just before leaving…. but all they would see was me – as I always am. Smiling and waving! I said to Noid’s mom over the weekend that sometimes you wish you could show people the pain, a missing leg, or a misplaced bladder you carrying in your hand perhaps?

If you go to the shop, it is said you could go to a shop but you not well enough to go to work. If you laugh, you look far to happy to be in pain, so why are you not at work? If you show any enjoyment at all, why are you not physically at your desk? It is a bit like when someone close to you die. You are expected to be in pain and cry and you may even feel guilty if you laugh, or enjoy something…. I mean, you’re so and so just died. Look the part dammit.

I realise I am just babbling on…. but you get my point. Would you choose what I am currently living when you have a job you actually rather fond off? I wouldn’t.

• Strange for me to be out of words and not blog for so long, but this too shall pass. (Some may be grateful for this.)
• Every new medication presented to me seems to have the added side effect printed on the pamphlet “weight gain” and “anxiety” This does not sit well with me. A fatter ass I can be anxious about? Oh yay!

• I have lost no more weight, but I gained nicely. If I was a pig being stuffed for a feast, right about now would be a great time to make the apple sauce. Have a lovely Shabbos.
• The illness, works mysteriously in its own ways.
• You can be in moderate pain (my doctor tells me this is my base line – I sound like a musical chorus) and have flare up once in a blue moon, once a week, once a month or once a year…
• I have done a fair amount of research and nobody seems to know what causes a flare up, so you have no signposts telling you to not eat this, or throw salt over your left shoulder, or only have sex balancing on your head or don’t walk under a ladder or anything. It can last for a full moon, a week, a month or until death we do part.
• My current flare up has been constant for approximately two months now and I hate it, but it sure loves me. I am sure even Shakespeare wrote about this kind of screwed up relationships – where one factor just can’t let go of the other.
• Work has been awesome in their support, understanding and encouragement and I am forever grateful. Some days I am able to do allot more from home than others and they have made a plan for a temporary person to do my in-house physical stuff. This makes me nervous – am I soon to be out of a job? I need to earn my salary. Imperative. Did I mention “anxiety“? Noid at least keeps telling me it will all be fine regardless…. don’t worry baby (can you hear the Beachboys….?)

• Random bits:
• “Rolling in the deep” by Adele is currently my favourite song. It makes me want to sing so bad. Her voice is gorgeous.
• I’m counting the days to my anniversary gift arrives.
• My hair is finally gaining length. Yay!
• I was truly blessed to fly to Cape Town last weekend to celebrate Noid’s Mom’s 60th birthday with his other siblings. I had a really good time and it is nice to finally feel like I have them figured out and they me. 🙂 (I’m easy – walk in the park! Not.)
• 
• We were only in Cape Town for the weekend and one of those days I spent in pain… and yay, got a middle ear infection. We found a lovely Jewish doctor on the Sunday morning who ignored me and only spoke to my husband who advised that I wait a day or two before I fly… gave me a letter…. we then went to possibly the slowest pharmacy on the planet (even for Cape Town) to get medication. I am convinced there is like a secret code out there that doctors may not give you a script for less than R400. Seriously. I should know. Buying shares would have been cheaper. I took all prescribed and flew home anyway (can’t leave my kids) and chew bubblegum (I hate people chewing bubblegum like cows) and kept equalising my ears. Thankfully we landed without my eardrum bursting. Winner Wenchy!
• I was privileged that I got to experience high tea at the Mount Nelson Hotel in Cape Town with Noid and all his family. It was everything I imagined and more – something that I have always wanted to do. Thank you husband.
• 
• Ink is important to me in expressing myself – and making me feel alive. Thankfully my awesome tattoo artist came to our home to decorate my body with more ink… and maintain tattoos I already have. Love Brent. I had three butterflies added to my arm representing my three (step) children. It is decorated in age order. 🙂 I also had the Hebrew word “L’chaim” tattooed on my right arm…. it means “to life“…. something very precious to me right now… and a word our friend Jason ended his speech with at our elopement. Noid and I also had an eternity tattoo with the word “love” added to the collection of “us” tattoos on my left arm. Noid also had the eternity tattoo done and on his other arm he had his kids names done in a scroll. Pictures on FaceBook.
• 
• I may be a bit slow but Elvis Blue is fantastic hey?
• I decided watching the New Zealand rugby team doing the haka equals porn. All those thighs, tattoos….. and testosterone all round. Gotta love it.
• Kids are all fine, I haven’t killed anyone.
• My husband must be exhausted working 13 hour days and doing all he can for me. Love you so lots.
• Only a month till our first wedding anniversary!
• I leave you with  bit of a blurred photo, cause that is how I feel.
• 

I wish you enough….. Mel I miss you…

Wenchy

Bantam hom so en flennie die snare
Ek is verlief op die kind
Die son slaan vuur uit die sweetvoshare
Ek is verlief op die kind
Hoor jy meisie met die sweetvoshare
verstaan jy die praat van die rankie snare
Ek is verlief op die kind
Lappa lei vir Bella koud, in Waboomskloof se geel bossies
Lappa maak vir Bella stout,
Met Hanepootse natrossies
Donkerrooi die wingerdblaar en warmrooi die mond van haar
My hart blom wit vir die voshaarnooi
Pluk heide van die rooiste rooi
Vir hierdie einste voshaarnooi
Bellabint my meisiekind, dis hartblom wit, die heiderooi
Bellabint my meisiekind, dis hartblom wit, die heiderooi
Vir jou my voshaar meisiekind
– Louis van Rensburg