Know your limitations

 Two weeks ago I handed in my notice………. ( I work at a bank - in Nigeria)

It's taken me a while for me to get to this point but it's something I had to do. For most of us we usually have the following reasons why we move on from our jobs 

•    Lack of motivation or direction

•    Frustration

•    Career progression

•    That most sacred increase in pay

•    or simply put you just can’t stand your boss

I won't lie and say that these weren't some of the reasons why I decided to move on but the reason that tipped the scales was the conversation I had with my GP over the summer.  As I have mentioned in a previous post Finding that Balance, I had been struggling with the work, life, and Grinch balance.  That was over a year ago, and while I had successfully manoeuvred work, the Grinch was kicking my arse and fucking with my brain.  

Back to my sit-down with my GP.  I hadn’t met her before…… we’d moved house so we had changed our GP practice.  So it was an introductory conversation, so she looked at my blood work, asked her questions and looked at me dead in the eye and said

“Given your type of Sickle cell, you should not be having these many crisis”

“Really? Well I know I’ve been working hard lately and I’ve been able to figure out how to bounce back……..”

“Its not about bounce back, you shouldn’t be having this many episodes at all.  You may not feel the effects of it now but every time you have a crisis it affects your bone and internal organs……. many of which you might not see the effects till you are much older.  Maybe you should make some life changes?”

She did give me the a whole load of medical mumbo jumbo but at that point I had stopped listening.  I had started my own conversation inside my head…….

Its hard when you know you are at disadvantage amongst your peers.  Given my experience one of two things usually to happens.

1.    You over-compensate. 

2.    You simply give up and use your disadvantage as the perfect excuse.

“As a woman working in a male dominated field, you need to make sure you are on top of your game to remain relevant” 

“We are sending you abroad to school, and we’re working really hard to pay your school fees - remember you are African and that you can not fail!!”

“Yes you fall ill from time to time, but you can’t use that as an excuse - your mates will leave you behind”  

These are typical scenarios where people feel the need to compensate.  The fear of failure is usually the driving force for why we push against the odds.  For me the fear of failure is raw and real this applies to both work and relationships - we’ll keep that for another post. 

Now before going into my appointment, I knew that work was the main reason for my more frequent crisis but like I had said before I had figured out a really good system for bouncing back.  I knew it wasn’t a solution to the problem but I was duking it out at work with the best of them and only a precious few at work knew what I was putting myself through to keep my head above water.  “Survival of the fittest…… never let them see you weak”  

Here is the kicker - I wasn’t happy.  Over the years I have become an expert when it comes to burying my feelings, always approachable, laughing and smiling.  The reality is this…… if you are breaking your back to sustain one aspect of your life, the other parts will suffer.  I was tired all the time, partly because of the mental exhaustion of me constantly pushing and partly because I was on pain medication…… constantly.  Inevitably anyone who made demands of me at work got a whole load of resentment their way - not always communicated but definitely their way.  It was becoming toxic.  So when my GP told me to make a change I thought - ‘Yup, its a wrap’.

Everyone at some point in their lives has had to deal with having to quit at something.  Some see it as failure, while some see it as change.  I choose to see this as a means of change, my evolution - me adapting to survive.  I tried at my ‘old’ job was actually quite successful at it, and it still didn’t work out.  I didn’t give up, I simply let go and now I’m open to a whole load of possibilities.  Being just open is not enough, no you need to evolve - learn what works best for, learn your limitations - accept your limitations but don’t let them limit you. 

To be fair, this doesn't sole apply to sicklers.  It applies to anyone who faces some form of adversity in their lives.  One of my favourite poems by our dearly departed Maya Angelou does help to motivate and sustain me.

You may write me down in history

With your bitter, twisted lies,

You may tread me in the very dirt

But still, like dust, I’ll rise.

Does my sassiness upset you?

Why are you beset with gloom?

‘Cause I walk like I’ve got oil wells

Pumping in my living room.

Just like moons and like suns,

With the certainty of tides,

Just like hopes springing high,

Still I’ll rise.

Did you want to see me broken?

Bowed head and lowered eyes?

Shoulders falling down like teardrops.

Weakened by my soulful cries.

Does my haughtiness offend you?

Don’t you take it awful hard

‘Cause I laugh like I’ve got gold mines

Diggin’ in my own back yard.

You may shoot me with your words,

You may cut me with your eyes,

You may kill me with your hatefulness,

But still, like air, I’ll rise.

Does my sexiness upset you?

Does it come as a surprise

That I dance like I’ve got diamonds

At the meeting of my thighs?

Out of the huts of history’s shame

I rise

Up from a past that’s rooted in pain

I rise

I’m a black ocean, leaping and wide,

Welling and swelling I bear in the tide.

Leaving behind nights of terror and fear

I rise

Into a daybreak that’s wondrously clear

I rise

Bringing the gifts that my ancestors gave,

I am the dream and the hope of the slave.

I rise, I rise………

I rise.

[Guest Post] I Can Be Anything

Hello all!!  Over the last couple of weeks I have asked Sicklers and Non-sicklers to contribute their thoughts, experiences and opinions.  This entry is from Aramide Abe, a fellow Queen's College Old Girl  (QCOG). Enjoy!!!

Right from when we were younger, I have always had a perception of people with sickle cell as ones who were limited when it came to physical activity, career, family life and even choices of partners in marriage.

This changed when I heard the most amazing story of a lady I know with sickle cell, who bore healthy twins. 

Typically, pregnancy is known to be challenging for sicklers, however the lady willed to give birth to children naturally given all the risks and odds. She had a conviction and believed that she would bear healthy children, opposing any 'projected' medical diagnoses that would discredit this belief. 

She gave birth to these twins (hale and hearty) in the states and I remember the whole of Lagos rejoicing over this news. Not only from the joy of two new additions to the family but also from zero indebtedness. Due to the circumstances, this delivery had racked up a $400,000 medical bill but by some miracle, the family only needed to pay a tiny percentage of it and the rest was taken care of.

This lady came out of the whole experience, healthy, whole and as a mother of twins - the person she wanted to be.

I look at people around me and marvel at their accomplishments - some of whom include sicklers - with kids, phds, good careers, healthy families, happy lives and this just tells me that you can be whatever and whoever you want to be - sickle cell or not - you just need to have the will and the faith.

I do not deny the fact that having sickle cell entails care and certain crisis preventive measures and I am thankful for medical science and continuous research that allows for us to better understand sickle cell and the care needed.

I do hope this blesses someone and firmly believe that if you have a conviction and will, then the world is your oyster and beyond the skies are your limit. 

Thanks Toyin for creating such a platform to encourage others.

Inspired? Wish to share your experiences, or your thoughts? Please send your entries into foxycleo@gmail.com. Let's breaks the silence and get the conversation going!!!!

Toodles!!!!!!

Marijuana, the Grinch and Pain Management

On to a more controversial subject......... Yes I'm going there.

Lately there has been a lot of activity online about the benefits of "Mary Jane" for sickle cell. The University of Minnesota is presently conducting research on the benefits of Marijuana on Sickle Cell pain management.  This got me thinking........... is Mary Jane a good alternative to typical Opioid pain management regimes?

If I were to absolutely believe the literature out there in cyberspace then I would say a resounding YES!!  However one needs to step back from what I like to call 'the noise' and really break it down.  

Everyone has a personal preference and the reality is right now there isn't a right answer to the question.  First things first, the use of Mary Jane is strictly for pain management, it is not a cure for Sickle Cell and it will not elevate the frequency of crisis's.  

My relationship with opioids is a love-hate one.  I love them when I need them because they take away the pain, and I absolutely hate them when I'm coming off them.  Confused? Well lets just say that the side effects of opioids - in my case - Morphine are as follows;

• itchiness - to the point where I'm literally scratching my skin off
• constipation
• nausea
• lethargy
• Mood swings - more towards the dark, depressed side of the spectrum

Sometimes the recovery from the opioids can take longer than the sickle cell crisis itself, so an alternative means of managing my pain without these hang-ups would be fabulous!!  Now thats not to say that Mary Jane doesn't have its negative side effects like paranoia, increase risk of lung cancer.

Over the years Marijuana has had a bad rap, demonised by America as a drug for low-lifes and degenerates.  Within the same country medical Marijuana has been found to have properties which help cancer patients with pain and nausea.  So when you think about it, why shouldn't it be considered as a pain alternative?  

One of the champions for the use of Marijuana for pain management was Sister Somayah Kambui - she passed away from suspected lung cancer.  She had several run-ins with the law about her pain management regime.  If you want to read more about her struggle view the video down below.

The phrase ‘self medication’ comes to mind.  At some point in our lives we have self-medicated, from taking flu medicine for the snuffles, to antibiotics for feeling run down, to Malaria pills for a fever.  The issue with self-medication is that nothing is measured, nothing is proven…… it can all go very wrong…. like Gregory House MD wrong.  Now thats not to say that the doctors who prescribe opioids don't get it wrong - I can't tell you the number of times I've had to send back medication because I felt it was way too much.

The other issues are quality and delivery, because of its ‘illegal’ nature, its not controlled so its sold with impurities in addition to being more commonly smoked.  This will have an adverse effect on your lungs, which can’t possibly be healthy.  Sicklers are already at a disposition for chest infections.  The effects of sweet MaryJane are short acting, so it will involve you smoking a copious amounts daily to even out the pain. 

Now I’m not one to judge and frankly every Sickler has their way of managing their pain, but I will say this……. there is a huge jump from using Mary Jane as a recreational habit to a pain management drug.  Until there is a form of Marijuana that is controlled and can be delivered in a form that is safe for Sicklers, I wouldn't advise its use for pain management.  

Would I recommend it as a recreational habit?  No Comment :) The risks are the same, and everyone is entitled to take risks to their health so long as they are willing to deal with the consequences.  So whats your take the subject? Feel free to leave your comments.

And on that note, till next time - Toodles!!!  

Traveling with the Grinch

So for my vacation I find myself in good old Blighty - the United Kingdom - for my baby sister's wedding (I don't care how old she is, she will always be my baby sister). I love Blighty, I grew up here, became who I am here, she's my second home. Blighty is where I learnt to take care of myself - on my own without parental assistance (best believe financially they were holding me down). Here is where I learnt that possibilities are endless so long as you're willing to take that first step. Blighty is where I learnt that no one is responsible for your welfare - you are.

I've never been one to take risks. The Grinch is a perfect excuse. 

"Lets go on holiday to Ibiza" 

"Man, I can't afford it" - the reality was always - hmmmm what if I have a crisis?

And sometimes the excuses creep into other scenarios.

"I can't be an investment banker, that job is too stressful"

"I can't take that course, what if I fall ill because of the stress?"

"I can't work out, I'm sure I will get sick"

"I can't go out, its too cold"

A Sickler's world can feel like its full of obstacles, obstacles that prevent you from being spontaneous or adventurous.  Family (bless 'em) in a bid to protect you can also reinforce those obstacles.  The reality is this, an obstacle is only an obstacle if you let it.

In my second year of university, I caught a bad case of 'itchy pants' syndrome and decided I didn't want to spend my third year in the UK.  So I applied to go on an exchange program to the University of Madison Wisconsin....... it was just a 'lets apply and see what happens kinda thing'.  I got it, in addition to a nice tidy scholarship - there was NO WAY the Grinch could mind fuck me to letting go of this opportunity. 

So off I went to Wisconsin, the 'America's Dairyland' - home to the cheeseheads, the Green Bay Packers, Garbage (The Band..... luv 'em) and the Wisconsin Badgers.  I was chasing my dreams, doing me, and then one night it almost came crashing down...... Hold on to that thought we'll get back to that shortly. 

For those Sicklers that are looking to go to university in the 'abroad' see this post as your idiots guide to survival health-wise. For those coming from a hot country, brace yourself because your body is going to have to adjust to your new environment. The change in temperature and humidity can be a clusterfuck. 

1.  Stay warm and more importantly stay dry. For the black females out there, you know that mantra about keeping your hair dry? Use that for the whole of your body. 

2.  The weather forecast is your best friend.  Nothing worse than stepping out of your house dressed for the summer and its autumn outside. 

3.  Drink loads of water, u might think you're not losing water because you aren't sweating. Big mistake, you are losing just as much water from central heating and the dry climate. 

4.  Get registered with a GP. If you can, dependent on your insurance options, get to see a hematologist. Based on your first meet, both of you can determine the frequency of your appointments. 

5.  Take your Penicillin. I do not deny that I am the most non-compliant patient so this tip is a tad hypocritical of me. In Nigeria the most common trigger of a crisis apart from stress is from infection - Malaria. Same could be said for the 'abroad' except it's chest infections. 

6.  Get your annual flu jab. The flu is no joke. Imagine having the flu, and then have a bad crisis aggravated by said flu AT THE SAME TIME? Not fun.........

Back to my anecdote.  Madison, Wisconsin is located in north-central USA, a mere 4 hrs drive from Chicago, Illinois.  Its a pretty quiet town with everything going for it........ except its fucking cold in the winter!!! So you guessed it, I fell ill...... constantly.  One particular night, the pain was excruciating and I couldn't breathe.  I had a flash back of annoyance  I remembered I didn't protest enough when the boyfriend at the time informed me he was going to Atlantic City with his Frat Brothers. (for those of you in the know, you can only imagine where and what he and his brothers were up to). Long story short, I woke up in ICU three days later. I have no conscious perception of what happened within those days.  What I do know is that I had had an acute chest crisis, which had required a blood transfusion. My parents freaked out!!  My mother - who I call my personal stalker - had located me in hospital (all the way in the abroad) and I spent the next two days trying to dissuade her from jumping on a plane to Madison Wisconsin.  

At that point, I could have left the U.S. with plausible reason and abandon my course. For me that was not an option. The thing is this - for whatever reason I was born with this condition but there was no way in hell it was going to run my life. Don't get me wrong I did run back home to my family........ It was a sorry sight. I had lost over a quarter of my weight, two dress sizes, and I had to use a crutch (I'll save that for another post) but when summer school started (despite my mum's pleas) I was back on a plane to Madison to make up my credits. 

So what's the moral here? 

God never gives you anything you can't handle. If he did, you would be dead. So don't use your 'hang-ups' as an excuse not to follow your dreams. That would be a total waste. Don't settle and kick arse. Apart from my mishap I had a fabulous time, an unforgettable experience and a sense of drive which keeps me going even now. It was from my time in the U.S.  I realized that getting a PhD was not impossible. 

So take risks (within reason) and live your life to the fullest!!!  Take precautions - you never know when it will save your life and just live. You have the right too. You're here aren't you?

So with that I'm gonna go enjoy the rest of my vacation. 

Toddles!!! 

SEX............. and the Grinch

SEX!!!  *giggle*

Now that is an exercise that everyone (especially in this part of the world) likes to pretend they don't do........ well those that aren't married...... and they be humping like rabbits.  Hypocrisy aside its an interesting exercise and tied in with the grinch it has lead to some interesting and compromising situations - I'm sure you're all gagging for my funny stories, maybe later....... over some dinner and a glass of wine.

First off, I'm about to vent right now, there are certain entities I would like to sue.  The first would be Walt Disney.  Fine as a kid sex is not the first thing on your mind when you watch the little mermaid or the princess and the frog, but hell……. that concept of happily ever after did not prepare me for the reality of sex and love - well that is another interesting topic for another post.

The next one is Mills and Boons.  At no point do ANY of those books prepare you for the messiness that is sex.  All those bodily fluids, the heat....the sweat..... the noises.... is not the pretty picture those books make it out to be.  

Rant over back to the real topic at hand.  Religion and morals aside, sex is one of the rights of passage growing up as a young buck.  From the moment you enter your teens, you talk about it, fantasize about it and for most of us lie about our experiences with it.  There isn't a rule book that tells you what to do or how to go about it........ most of us just muddle through trying to achive that sacred orgasim.

For Sicklers all of this applies in addition to what I call the Russian Roulette syndrome, let me explain.  While sex is a powerful & enjoyable experience (just ask Henry VIII, dude started a new religion just so he could bone Anne Boleyn) its also quite strenuous and can cause a crisis.  The act in itself, if done too rigorously - I know, I know porn has a lot to answer for - can cause an attack during (this totally sucks balls - pardon the pun) and after (at least there is the pleasure before the pain).  So Sicklers have to 'prepare' for the act.....we'll get to this later but know that as with everything the Grinch - spontaneous little devil - can still make an appearance.

I can hear the young ones complaining already....... why does one need to prepare for sex?  This totally kills the spontaneity of the situation, why can't I be like normal people that just do it???!!  This is just another thing the Grinch uses to complicate my life.  I hear you, but you know what? Sex is a wonderful thing........suck it up and deal.  You not taking care of yourself does not only affect you.  Case in point was when I carelessly had sex with an individual who didn't know I was a sickler after a wild nite out clubbing.  EPIC FAIL!!  The night ended with an ambulance ride to A&E and the poor man running for the hills thinking that he had 'broken' me.

The other point is this...... if you are pursuing a serious relationship with someone and you have a crisis every time you have sex best believe, despite how good the other person is, it will put a strain on your relationship.  

So how do you - the Sickler - prepare for 'la petite mort'?  I did a quick scan on the internet and I was pleasantly surprised that in other parts of the world people do talk about it....... in depth.  The Sickle Cell Warriors site had an interesting article that stressed the following points;

1. Hydrate excessively.  Sex is a physical activity, and like all physical activities, you will perspire and lose bodily fluids. So drink water before, during, and after without shame.  Sure you might have to break to pee, but at least you won't be in pain after.
2. Premedicate. For some, taking painkillers before sex helped to stem the tide of a mini-crisis afterwards.
3. Talk to your partner.  Tell your partner that you might have some limitations around sex. Communication is essential and will help your partner be a vanguard of your safety. Tell him/her that you are excited about the boudoir session, but need to protect your health. 
4. Listen to your body.  You must remember that “Pain is your Body telling you that You Need to Take a Break.” So when you are having sex, if you feel pain, stop. Change positions frequently so that you don't lose blood flow in any areas. And remember, you don't have to be going hardcore every single minute. Sometimes, it’s the pauses between sex that elevate your intimacy.
5. Set the environment.  Your bedroom should not be too hot (you will sweat more and dehydrate faster), or too cold (you will vaso-constrict and sickle faster).  Choose a decent temperature, that is comfortable for nudity.  Men—remember that women have to be romanced in the mind first. Women—remember that men have to be seduced visually first.
6. Frolic with Foreplay.  For people with sickle cell, foreplay is your friend. Foreplay gets your partner hot and bothered, and yet, it doesn’t have you over exerting yourself.  Don't rush the foreplay—drag it out, take it slow, and leave your partner simmering and almost about to explode.
7. Be Safe.  Safety is key. Have fun, play hard, play safe, use condoms/birth control.  Make sure if you do plan to procreate, that your partner has been screened for SC trait. Better safe than sorry.

I hope this post has helped but I wonder if any of you have any tricks that you have found to help?  Don't hesitate to leave your comments and for those that are more sensitive my email is foxycleo@gmail.com.

Toodles!!!!

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!!