For September..........

Following my last post [My relationship with pain], a dear friend noticing my 'crappy' mood of late wrote this......

Pile on the love, pile on the awkwardness,
I’ll see what I want, feel what I choose.
Be human, be your freaking self,
Be beautiful, be limber, get loose.

Breathe, there’s enough air to go round,
Fly, let those inhibitions go (far away),
Plummet, it’s okay to be earthbound,
Look crashing in the face and scream, “Not today!”

Believe the hype, yes, you rock,
The ones telling you differently are blind.
Quote me (in your own defence), I know you well,
Your lovely eyes, your soft hands and your beautiful mind.

It’s hard right now, but it gets better,
I swear it gets better, the sun’s just hiding.
So those damned clouds? Pay them no attention,
To hell with the shadows, your glory will be blinding.

To Ore Fakorede thank you for your words...... they put a humongous smile on my face this morning.  Hope you don't mind but I thought your words were so beautiful I needed to share for those that need that much needed pick-me-up. 

This September is Sickle Cell Awareness month so I'm opening up my blog for anyone who has been affected by this disease to put their thoughts to paper and I will showcase your content.  Please send your entries to foxycleo@gmail.com.   For those on Instagram join in the #boldlipsforsicklecell campaign (yes men and women) on Instagram and let's get people talking!!  

Feeling the love, 

Toodles!!!

My relationship with pain

Pain is an interesting sensation. Pain can bring out a number of reactions; Shock, Fear, Frustration, Pleasure, Anger......    Whatever the reaction, they are instant and intense.

Over the centuries, pain has been used as a training tool. From a slave master whipping their slaves, to a toddler who sticks their finger in the hot water tap of a water dispenser, to a parent who smacks their child, to a person's first heart break.  The age old logic is 'if it hurts, learn from it and don't do it again'. 

So what's my relationship with pain? It's like any relationship you have with a wild animal. You can tame it, or in my case it tames you, but drop your guard or not play by the rules, it will cause all manner of damage. 

Pain is a wonderful training tool. I've been trained to get things done and avoid procrastination (sometimes though it is hard to do.....go figure, I'm human!). I've learned to be determined, work through the pain...... Take no prisoners. I'm fiercely logical, so my problem solving skills are off the chain.  All these acquired skills...... Sometimes it's hard to decipher  whether they have been taught to me or they are part of my personality. 

All these skills helped me get where I am today. I have a PhD........ In computer systems engineering (I won't lie, that shit was difficult). The thing about a doctorate is this, it has fuck all to do with how 'intelligent' you are. It's all about whether you have the balls to start and better yet, whether you can achieve the goals you set. It's not for everyone and to be frank if I was given a chance to do it again I not sure I would do it again.

Growing up I went to a catholic summer school (call it a symptom of very easy-going parents, cos we ain't catholic).  When the proprietor found out I was a sickler, she took me aside and counselled me on how the pain could be put as an offering to Jesus, because he did the same when he died for our sins.  I think she thought it would be an avenue to help me deal.  Here's the thing about drawing on metaphors, if you don't make them exact you run the risk of making yourself sound like you're selling pointless insurance especially when you haven't a clue who you're trying to sell it to.  When you think about pain, you think about the light at the end of the tunnel, when you get to the other side, when it stops hurting...... that does not happen with Sickle Cell.  Sure the pain stops after a crisis, but there is no telling when the Grinch will come back.  No one tells you how to deal with that uncertainty, no one tells you sometimes no matter how much you play by the rules "shit just happens".  But hey "That's life".........DEAL.

I know I'm not painting a pretty picture, and frankly my intent is not to, but these are the thoughts that can go through a Sicklers head from time to time.  I would have loads of sessions with my psychologist friend (I miss her loads!!) where I would just off load and she would help me see that even if I couldn't see the end of the tunnel there were those things that offset the bad - Family, Friends, Love, my achievements despite my shortcomings, and the hope that as I moved through the different phases in my life - MY Definition would have less and less of the Grinch forefront.

For my learned friends I'm sure they are chomping at the bit to say these thoughts and feelings are that dreaded word........... Depression.  Now most sicklers I know like to think that they only have to deal with the sickle cell - I'm one of those people but there are side effects to the disease that do affect our quality of life.  A year ago my GP in the UK made me fill a questionnaire and she told me that I was moderately depressed.   I totally ignored her but given these last couple of months I'm now inclined to take her a little more seriously.  I'm currently trying doing my research and I will have a post talking about Sickle Cell and Depression but in the meantime know that you (my fellow sicklers) are not going crazy and you are not alone...........

Toodles!!

To my friend...........Edmund Oteh

It was a just a normal day at work. It was raining outside and EVERYONE was complaining about how cold it was in the office.  I mean really – it’s cold outside so why do we need to have the central cooling system on full blast. Me? I was totally fine. Not only did I always have my trusty cardigan I also had my blanket.  Yes you read right, my blanket.  My wonderful mum, based on my previous complaints had taken it upon herself to purchase a 100% lamb wool blanket from the abroad to protect her daughter from the cold.

Anyone who knows me knows I have no shame.  In my corporate environment you will see me with my trust blanket wrapped around me like a ‘wrapper’ as and when needed.  J 

Then I got the phone call… it was from O.

O: Hello?

Me: How nawh? How’s u?

O ignores my question and goes… Are you sitting down?

Now O and I have a history to taking the piss out of each other on the regular, so I reply ‘Yes’ – I was lying.

O: He’s gone your son has gone….

Me: Huh?

At this point I was confused for two reasons:

1. I was waiting for the punch line, O never started a phone conversation in such a serious tone and
2. Given that I have never been preggers I was wondering where the hell I got a son from

O: Eddy he’s gone….

As the penny dropped I wish I hadn’t lied because my legs gave way and I fell into my chair. 

Me: What the hell happened?!

O: He had a very bad crisis… I have to go, will call u back

Trust O to drop a bombshell and leave!!

My emotions flew from confused, to sad, to that of white-hot anger!!  I’ll explain why.  Eddy was a colleague from my last job.  Eddy was a Sickler.  He was a quirky, intelligent, funny, larger than life character who was drifting through life.  Dude had potential that would take him far, but due to his condition (and social constraints) he did take the easy route with a lot of things.

We became fast friends and yes I did end up ‘Mummying’ the lad.  We could relate on things that so many non-Sicklers can only fathom.  I always knew when he was ill and pretending (EVERY Sickler has done this).   With him he usually did it for 2 reasons:

1. He didn’t want to go home (the commute did take it out of him cos he lived in the sticks)
2. He had forgotten his painkillers

I can’t count the number of times I would give him pain meds (being a female who caries a handbag helps a sister be prepared).  I also found myself acting like my mum, checking to see if he had had drunk enough water.

I would always ensure that he was empowered at work, and he was happier for it, taking on more responsibility and making changes in his life.  I remember having a heart to heart with him where I told him that his mum (bless her) would not be there to take care of him forever.

Eddy died on the 2^nd of April 2014 from complications from a badly managed crisis.  I won’t go into the details but I will say this… it was totally unnecessary!!  Today, the 19^th of June 2014 is Global Sickle Cell Awareness day.  If you have read my previous post you will know that I feel that there is too much emphasis on prevention and not enough attention on living with the disease.

Awareness should also extend to Sicklers.  Sicklers are experts in their condition – every Sickler is different and every crisis is different.  While Doctors are trained in the medical field, their jobs are easier when you the Sickler can put in your own input.  Know your pain levels, take care of yourself and NEVER be afraid to question their treatment.  The moment a doctor doesn’t listen to you, insist on getting another physician. 

It’s taken me almost 3 months to summon up the courage to write this post because;

1. I knew I would have to write about Eddy in the past tense,
2. Writing about this will also make me think about the reality of my own mortality and how I would hate to pass away due to Sickle cell

On that sobering note, I’m out.....

Toodles!!

CRIMSON

I'm always on the lookout for Nigerian talent.  It brings me great joy when you find people who you have people who reek of creativity and showcase their talent.  Case in point is Blue Graffiti Films who have brought us the Crimson series.

 "Crimson is a series of short factitious thrillers loosely based on several mysteries within Nigeria's intriguing political space."

I absolutely love what I've seen so far!!!

Presently there are three episodes in the series

Amazing Grace

Your Cup of Tea

Ink, Blood and Piss

Written and Directed by Daniel Etim Effiong. Produced by Lala Akindoju. Photographed by Kagho Idhebor Crowther and edited by Mohammed Atta.

I'm not going big it up too much so I don't spoil it for you guys but I love the cinematography and the writing.   

Check it out and subscribe to their channel 

https://www.youtube.com/channel/UCrxmfkuOCk_vfPy3JkPOdJA?feature=watch  

Toodles!!

Hello my name is [insert name], would you like to be my friend?

This post is going to serve a guide (I'm struggling really hard to not write idiot's guide) to being a friend to a sickler.

Why do you need a guide?  You don't really but sometimes its nice to have some clarity on how to handle certain situations and reduce the number of douchebag moments.

I don't look like a Sickler. What does that mean? People assume that because one is a Sickler one must look sick......all the damned time!!  In the book that traumatized me - for a refresher read this, it indicated that Sicklers had the following physical characteristics

1.  Yellow skin and yellow eyes

2.  Buck teeth

3.  Predominate foreheads

4.  Inflamed joints. The list was endless. 

I like many others don't have these physical characteristics, so friends & family tend to forget.

Its a double edge sword.  While Sicklers don't want to be reminded of what they are, they need for their friends & family to remember.  Why?  Because in a bid to be 'normal' some Sicklers take risks to be in-with-the-crowd.  Everyone goes through this........ its part of growing up.  The only difference is for Sicklers or anyone with a pre-existing condition the repercussions tend to be predictable and more severe.  In my previous posts I've talked about the short term effects of sickle cell pain.  There are long term implications each time a Sickler has a crisis, one of which is Bone Sclerosis.

Bone Sclerosis otherwise known as the bruising of the bone.  Research has shown that there is a positive correlation between bone sclerosis and crisis episodes. In essence, just because you don't see anything on the outside, believe that there is some damage going on on the inside.  Side effects of bone sclerosis can range from the 'bowing' of the vertebrae and the slow corrosion of the head of the Femur. When you are a young spritely young buck you don't think of these things. When you get older...... TRUST the fear of growing shorter or getting your hips replaced is no joke!

Back to friends & family.  In my experience one of two situations can occur;

1. Friends/family tend to wrap Sicklers in cotton wool. While this comes from a good place it does get fucking annoying!
2. Friends/family forget and push Sicklers (unwittingly) into compromising situations.

I am the first to admit that in the latter situation the Sickler should take on the responsibility of just saying no, but it does get wary when one has to say NO all the time. And this leads perfectly into where being a young, stupid whippersnapper comes into play:

So what is a Sicklers Kryptonite? The concept of being 'normal' - to have cold showers, drink only when thirsty, get cheap travel insurance, run on a treadmill for more than 20 mins, survive on less than 6 hours sleep, drink their fellow drinking buddies under the table, step outside in the cold without a sweater/coat, go 6 months without having to see a hematologist, ophthalmologist or an orthopedic doctor.....  The worse thing you could do to a Sickler is to make them feel like they are not normal...... but the reality is they aren't.

Over the years I have perfected the art of my 'play by ear' system when it comes to social commitments, much to the annoyance of friends and family.  The reality is no two days are the same, one day I could wake up full of energy, and in a split second a crisis could start.  So I cancel on my friends last minute and am hesitant to commit, this usually leads to frustrating conversations where I come off as a mean-spirited stubborn cow.  Those conversations irritate the fuck out of me.  The easiest thing for me to do would be for me to state the reason why I can't come out is because of the Grinch.......... but that would mean that I'm not normal.  So as a family/friend, if I say, I can't come out....... accept and respect it.

So what do you do when you happen to be with a Sickler during a Crisis?

Its funny..... I don't like having friends and family around me when I'm in 'full flow'.  Why?  Apart from it not being a fun time, I find myself comforting and re-assuring my friends/family.  It is exhausting.  I have been know to 'disappear' - what do I mean? There was a incident where I was staying over at a friend's house in Stratford.  The Grinch decided to make a house call and rather than alert my friends, I snuck out of the house, and drove.....in pain to Lewisham hospital. That is roughly a 10 mile drive.  Needless to say, my friend and her now husband were very upset with me.

So what do you do?  Just be supportive.  We've (Sicklers) have a lifetime's experience with this.  So don't panic, be strong, and LISTEN.  Tosin Coker states this eloquently, so have a gander.................

Toodles!!

Nigerian Talent - Introducing Sporedust

Nigeria has mad talent!!!

The first time I met Sporedust http://www.sporedust.com/ was at a TEDxVictoriaIsland event where they presented the a version of the video below.  Needless to say they brought the house down.  

- Enjoy

Finding that balance

This last month has been absolute hell.

From time to time the Grinch - sidebar, for the purposes of this post I am calling Sickle cell "the Grinch" because right now those are my feelings towards it - likes to remind me who's boss.

In 2009 I achieved my record number of hospital visits within 1 week.  My record is five, yes 5 times. Though one of those visits involved a hilarious episode (though I didn't think it at the time) where I had an allergic reaction to the seafood medley my long suffering twin sister cooked me.  I woke up at 4am with my face itching to high hell, and my lips felt like I had kissed the wrong end of a bubble bee.  I will never forget my irritation at the A&E receptionist when she unwittingly asked, in her cockney accent, "So why are you here today?".  My reaction was shove my face closer to the glass divider, point my finger towards my face and say "Can't you tell??".  Till this day I'm convinced that that allergic reaction due to the combination of the drugs and the seafood.

Besides that episode, that week was hell, no matter what I did, I kept on having to go back.....screaming for the drugs and being thankful that the episode was over so I could continue with my life.  Apart from the physical exhaustion, that shit does a number on your psychi.  At the time I didn't have the pressure of a full-time job.  I was writing my thesis, so my schedule was flexible and taking time-outs were okay.  So in between hospital sessions I would sit down and think about my existence.  Given the circumstances self pity usually creeps in.  Was this all I had to look forward to?  Why me?  What the fuck...... why is this happening again.....what did I do differently?

So now we come back to August 2013.  I've moved back to Nigeria, on my hustle, working full-time job at a bank (what was I thinking?!!!), single, and co-existing with the Grinch.  Work has been challenging (I may complain about it, but I love the challenge) with long working days (round about 12 hr days), and being single I do enjoy an active social life.  The Grinch don't like that.  See, the Grinch is a very jealous lover, so when you don't pay attention to him, he tends to kick back.  This time, the Grinch kicked back with a vengeance. 

For the last 4 weekends there has been an episode of varying proportions, the climax of which culminated in me maxing out on all my pain meds and learning that paracetamol....... yes paracetamol also comes in injection form.  One thing I will say, works a treat but its fucking painful when it goes in.  Even though its been more than a week since the last incident my arse feels like a pincushion - which does make sitting down on hard surfaces for long periods quite painful.  Obviously I'm not getting the balance right, but who does? 

In 2009, I had the time to contemplate and wallow in self pity. Today I realize that self pity gets you nowhere and there isn't the fucking time. There will always be someone more worse off than you and it's a dog eat dog out there. 

Here is my dilemma, and I'm sure many of you corporate buffs can relate, how do you find that balance?  No one is perfect and in the cut-throat corporate world your worth is only as good as your productivity. So if you are not upto scratch you get spit as fast as u can say "what the f....". So the objective is to keep pushing to meet your deliverables. Problem is, if you push too hard the Grinch will have something to say about it. And if you over-compensate by letting other aspects of your life slip you wake up at 60, alone with a load of cats to keep you company....... And I hate cats. 

So what's the answer? Damned if I know. All I know is I want to live my life to the fullest, and be financially independent. That's a hard thing to do for a normal person let alone dealing with the Grinch and no disability discrimination laws to protect you........ Remember this is Nigeria. 

So my question is this? How do you find that balance?  Can you have everything or does it always come down to a choice?  If you have the answers let me know...........

Toodles!