It's been a while since I've been here.
A lot of reasons why...been busy, family's around, not been inspired & truthfully just been lazy. But today I was listening to the song Human by The Killers and the line - 'sometimes I get nervous when I see an open door' - struck a chord within.
I hate change, I always have. I get a sick feeling in my stomach when I start anything new - school, work, friendship, relationship etc. I may not like where I am at but for me it's better the devil you know. I hate stress, I like being comfortable and if I'm nervous I'm far from comfortable.
I am also sadly a control freak. I like things just so and if they aren't just so, it feels like my world is off kilter and I hate that. As you can imagine when it's something new it's not just so, it takes a while for you to get your bearings and figure things out. I don't like that, I like being comfortable all the damn time!!!
So how do you live in a world that's in a constant state of change. According to The Killers you 'close your eyes, clear your heart, cut the cord'...me, I prefer thinking worst case scenario and then doing what needs to be done. If worst case scenario doesn't occur, then it's all good and at some point I find my bearings and institute control over my new state of affairs.
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Saturday, 23 July 2011
Sunday, 19 June 2011
My So Called Sickle Cell Disordered life
Today, June 19, is World Sickle Cell day. A day that's meant to be used to raise awareness of the disease. So this is me, a sickler (a person who has sickle cell disorder), doing my bit for SC day.
I am not going to go into the medical definition of SCD, I'm going to assume that if you are savvy enough to get onto this blog then you are savvy enough to google SCD. What I am going to do is give an insight into how SCD has impacted my life or rather what it's like living with SCD.
It's not something I'm used to talking about unless asked so here's hoping this post makes sense.
The main symptom of SCD for me has been pain, from mild aches to excruciating 'kill me now please' pain. And it can strike anywhere, I've experienced joint pain (all joints), back pain, chest pain, head pain, tail-bone (the absolute worst hands down), pelvic (gives tail bone a good run for its money) and collarbone (right up there with pelvic and tail bone in terms of discomfort and intensity).
I'm going to pause here and go a bit medical, the reason for the pain is that my red blood cells have gone into a sickle shape as opposed to the normal disc shape red blood cells usually are. Why do they go into a sickle shape? Google.
So the red blood cells go sickle shape and this causes an episode of pain which in the SCD world is referred to as a 'crisis'. Now most medical personnel I have come across in my thirtysomething odd years tend to term all episodes of pain as crisis. I don't do that, and I don't think many sicklers do. For me a crisis is when the pain is more than a mild ache and over the counter drugs (paracetamol, ibuprofen etc) don't do shit.
Please note, a crisis does not always mean I will be hospitalised. I have dealt with plenty of crisis's at home, as long as I had prescription only pain killers, some form of heat compress, lots of drinking water, and most importantly my Mama.
However, for me and I'm guessing most sicklers, there's a point of no return, when you realise that you are only going to get relief if you get to a hospital asap. A good hospital I should state here, unfortunately with SCD, only experience will teach you which hospitals to avoid like the plague, *coughqe2cough*.
Now friends, families & well-wishers who are around when the sickler has reached the point of no return...there's one simple rule you need to obey....do not ask how the pain is, infact I personally would prefer it if you don't speak at all. If I voluntarily ask to go to the hospital (usually at about 4 or 5am for some unfathomable reason) common sense ought to tell you the pain is effing bad. Also medical personnel at A&E, why do you persist in asking me what number the pain is on a scale of 1-10, if I'm in A&E at 4 or 5am, the pain is a flippin 15...off the damn scale so just give me the morphine, hook up the fluids, get me a bed and shut up.
P.S - I would prefer you also hook up a PCA (patient-controlled analgesia) so I don't have to look for a nurse who'll have to look for the registrar on night duty who is usually far far away somewhere before I can get another shot of the good stuff.
Now the reason I would prefer that people not speak to me when I'm having a crisis especially a 'kill me now please' crisis is simple. The pain is bad, really bad. It hurts to speak, it hurts to think. I am in a bubble of pain and all I want is to get out of it, I will even settle for just taking the edge off the pain, which is what that first shot of morphine in A&E usually does... if you're lucky (unfortunately I have been unlucky many times...once KK joked that the morphine in one hospital must have been fake because they gave me a lot of shots and that bubble stayed intact... *coughqe2cough*).
It should be noted that episodes of crisis is not the only impact SCD can have on your life. It can also cause many other complications. One of which for me, has been AVN (avascular necrosis)....google it. I'm not going to go into this suffice to say I've had to have a hip replacement and I'm probably looking at a shoulder replacement. On the plus side though I've saved a LOT of money on handbags as I prefer not to put weight on my shoulder so I rarely carry them.
You would think that crisis and avn are the worst things for me when it comes to SCD. But they are not, the absolute worst is the mental effect it has had. SCD has the ability to destroy plans and disrupt your life and because of this you live in a state of fear. For example, a crisis can strike at anytime without any warning, so you are constantly on edge, aware of any and every twinge that occurs in your body...it's exhausting. If you pay attention as a sickler, you discover your triggers (what is likely to bring on a crisis), for me it's - stress, sudden change of weather (hot to cold, cold to hot, anything), menstrual pain, and infection. So I am on the constant watch out, unfortunately the damn thing could still strike anyway no matter how careful I've been.
So over the years you deal with...missed school, missed work (or powering through the pain because you don't want to miss an exam or the first day of work, Aelex); missed aeroplane flights therefore missed holidays (or you take the flight anyway because the pain struck on the day you are flying so you cry and pray your way through the flight); missed weddings and parties (or attending the wedding anyway because you are the Chief Bridesmaid, luckily Ookc was a star and didn't mind having a completely useless CB); missed being part of the carnival in primary 2, missed playing with the abacus in nursery 1 (and they wonder why I'm bad at maths???).
**Please note exceptions above can only happen when the pain is less than 'kill me now please', at that stage you can barely function, just breathing is an achievement!!!
But it hasn't been all bad. I've been lucky with my family, friends & well-wishers who are an amazing bunch. Especially Big V & Mama who never ever let me feel like I was less than anyone else, anything KK could do I was allowed to do....well except rough play. I remember missing most of Form 5 in secondary school and Big V being told by the school that I would have to repeat the form, he assured them (without consulting me) that I would keep up, that they either put me in Form 6 or I would be leaving the school, repeating was not an option. I kept up.
This post is now getting too damn long and though there are loads more issues I should mention (e.g being constantly tired because sicklers have low haemoglobin levels), I am getting tired talking SCD.
So I'm going to end by saying that my life as a sickler has been pretty damn good despite the crisis and the avn and other stuff. I wouldn't change it at all.
Also last year I decided to go on this wonderful drug called Hydroxyurea which is meant to reduce the intensity and number of crisis episodes... today is 361 days crisis free :)
P.S- Every sickler is different therefore every sickler's experience with SCD is different, as such though I'm reacting positively to Hydroxyurea it doesn't work for everyone. Also I still get achey but no crisis so I'm a happy camper.
I am not going to go into the medical definition of SCD, I'm going to assume that if you are savvy enough to get onto this blog then you are savvy enough to google SCD. What I am going to do is give an insight into how SCD has impacted my life or rather what it's like living with SCD.
It's not something I'm used to talking about unless asked so here's hoping this post makes sense.
The main symptom of SCD for me has been pain, from mild aches to excruciating 'kill me now please' pain. And it can strike anywhere, I've experienced joint pain (all joints), back pain, chest pain, head pain, tail-bone (the absolute worst hands down), pelvic (gives tail bone a good run for its money) and collarbone (right up there with pelvic and tail bone in terms of discomfort and intensity).
I'm going to pause here and go a bit medical, the reason for the pain is that my red blood cells have gone into a sickle shape as opposed to the normal disc shape red blood cells usually are. Why do they go into a sickle shape? Google.
So the red blood cells go sickle shape and this causes an episode of pain which in the SCD world is referred to as a 'crisis'. Now most medical personnel I have come across in my thirtysomething odd years tend to term all episodes of pain as crisis. I don't do that, and I don't think many sicklers do. For me a crisis is when the pain is more than a mild ache and over the counter drugs (paracetamol, ibuprofen etc) don't do shit.
Please note, a crisis does not always mean I will be hospitalised. I have dealt with plenty of crisis's at home, as long as I had prescription only pain killers, some form of heat compress, lots of drinking water, and most importantly my Mama.
However, for me and I'm guessing most sicklers, there's a point of no return, when you realise that you are only going to get relief if you get to a hospital asap. A good hospital I should state here, unfortunately with SCD, only experience will teach you which hospitals to avoid like the plague, *coughqe2cough*.
Now friends, families & well-wishers who are around when the sickler has reached the point of no return...there's one simple rule you need to obey....do not ask how the pain is, infact I personally would prefer it if you don't speak at all. If I voluntarily ask to go to the hospital (usually at about 4 or 5am for some unfathomable reason) common sense ought to tell you the pain is effing bad. Also medical personnel at A&E, why do you persist in asking me what number the pain is on a scale of 1-10, if I'm in A&E at 4 or 5am, the pain is a flippin 15...off the damn scale so just give me the morphine, hook up the fluids, get me a bed and shut up.
P.S - I would prefer you also hook up a PCA (patient-controlled analgesia) so I don't have to look for a nurse who'll have to look for the registrar on night duty who is usually far far away somewhere before I can get another shot of the good stuff.
Now the reason I would prefer that people not speak to me when I'm having a crisis especially a 'kill me now please' crisis is simple. The pain is bad, really bad. It hurts to speak, it hurts to think. I am in a bubble of pain and all I want is to get out of it, I will even settle for just taking the edge off the pain, which is what that first shot of morphine in A&E usually does... if you're lucky (unfortunately I have been unlucky many times...once KK joked that the morphine in one hospital must have been fake because they gave me a lot of shots and that bubble stayed intact... *coughqe2cough*).
It should be noted that episodes of crisis is not the only impact SCD can have on your life. It can also cause many other complications. One of which for me, has been AVN (avascular necrosis)....google it. I'm not going to go into this suffice to say I've had to have a hip replacement and I'm probably looking at a shoulder replacement. On the plus side though I've saved a LOT of money on handbags as I prefer not to put weight on my shoulder so I rarely carry them.
You would think that crisis and avn are the worst things for me when it comes to SCD. But they are not, the absolute worst is the mental effect it has had. SCD has the ability to destroy plans and disrupt your life and because of this you live in a state of fear. For example, a crisis can strike at anytime without any warning, so you are constantly on edge, aware of any and every twinge that occurs in your body...it's exhausting. If you pay attention as a sickler, you discover your triggers (what is likely to bring on a crisis), for me it's - stress, sudden change of weather (hot to cold, cold to hot, anything), menstrual pain, and infection. So I am on the constant watch out, unfortunately the damn thing could still strike anyway no matter how careful I've been.
So over the years you deal with...missed school, missed work (or powering through the pain because you don't want to miss an exam or the first day of work, Aelex); missed aeroplane flights therefore missed holidays (or you take the flight anyway because the pain struck on the day you are flying so you cry and pray your way through the flight); missed weddings and parties (or attending the wedding anyway because you are the Chief Bridesmaid, luckily Ookc was a star and didn't mind having a completely useless CB); missed being part of the carnival in primary 2, missed playing with the abacus in nursery 1 (and they wonder why I'm bad at maths???).
**Please note exceptions above can only happen when the pain is less than 'kill me now please', at that stage you can barely function, just breathing is an achievement!!!
But it hasn't been all bad. I've been lucky with my family, friends & well-wishers who are an amazing bunch. Especially Big V & Mama who never ever let me feel like I was less than anyone else, anything KK could do I was allowed to do....well except rough play. I remember missing most of Form 5 in secondary school and Big V being told by the school that I would have to repeat the form, he assured them (without consulting me) that I would keep up, that they either put me in Form 6 or I would be leaving the school, repeating was not an option. I kept up.
This post is now getting too damn long and though there are loads more issues I should mention (e.g being constantly tired because sicklers have low haemoglobin levels), I am getting tired talking SCD.
So I'm going to end by saying that my life as a sickler has been pretty damn good despite the crisis and the avn and other stuff. I wouldn't change it at all.
Also last year I decided to go on this wonderful drug called Hydroxyurea which is meant to reduce the intensity and number of crisis episodes... today is 361 days crisis free :)
P.S- Every sickler is different therefore every sickler's experience with SCD is different, as such though I'm reacting positively to Hydroxyurea it doesn't work for everyone. Also I still get achey but no crisis so I'm a happy camper.
Thursday, 9 June 2011
Outside I'm masquerading...
They see the smile on my face,
They assume there's strength within.
'It's not strength' I want to tell them, 'It's surviving',
The world didn't give me a choice but to survive.
I'm screaming within, weeping, crying out,
Hear me, See me, Feel me, HELP ME!!!
But they see the smile on my face,
They assume there's strength within.
Title - The Tracks Of My Tears by Smokey Robinson
They assume there's strength within.
'It's not strength' I want to tell them, 'It's surviving',
The world didn't give me a choice but to survive.
I'm screaming within, weeping, crying out,
Hear me, See me, Feel me, HELP ME!!!
But they see the smile on my face,
They assume there's strength within.
Title - The Tracks Of My Tears by Smokey Robinson
He who has begun has half done...
I don't write poetry, I don't want to write poetry, I don't think I can write poetry and I'm most especially not a big fan of conventional poetry. I had enough of that in school.
Over the last few days I've read a couple of books that have dealt with the themes of hope, struggle, and the general purpose of life especially a life beset by struggles...(if anyone has an answer to life's purpose I'd be happy to hear it).
Anyway these books awakened a little bit of creativity in me (probably because I identify with the themes) and I started writing dialogue which I hope will be incorporated into a story I've been mulling on, but I thought in the meantime I'd post it here. I've pretty much shortened the dialogue into a form of prose...I hesitate to say poetry because like I said, I don't write poetry.
Title - I'm taking a step away from music with this one, title's from a quote by Horace.
Sunday, 5 June 2011
That's right, I'm on my own, I'll call my own shots, thank you...
I haven't said one word to anyone today, not one word. For the first time since last year I'm on my own...Big V's left, Aunt J's left, Mama, Lil V and lastly Cuz B, all gone back to Gidi. So I'm on my own...and I'm loving it.
I'm loving being in control of my environment, and just to ensure I'm in complete control, I've blitzed the house. Gone from room to room cleaning with a frenzy, stripped beds, made beds (hate bare mattresses), swept...yes swept with good old fashioned Naija igbale, dusted, mopped, washed and tidied, all on a cloudy rainy sunday when most sane people are in bed.
I clearly accept that there may be a slight touch of insanity going on with me especially as now my shoulders are on fire, my chest aches and I am tired....but hey I'm happy. I walk into each room and look around and I'm happy...yes Dr Lil & Cuz S I agree that I am most likely stupid and irresponsible for embarking on such a mission as recently I've been complaining about being tired. I fully expect your phone calls or bbm's insulting me.
It was worth it though because it's nice knowing everything is in place where I left it. Control freak much? Most def and it seems it's only getting worse as I get older.
Anyway I'm off to get ready for evening service...apparently its going to be a Celtic style service, sounds interesting :)
Title - Control by Janet Jackson.
I'm loving being in control of my environment, and just to ensure I'm in complete control, I've blitzed the house. Gone from room to room cleaning with a frenzy, stripped beds, made beds (hate bare mattresses), swept...yes swept with good old fashioned Naija igbale, dusted, mopped, washed and tidied, all on a cloudy rainy sunday when most sane people are in bed.
I clearly accept that there may be a slight touch of insanity going on with me especially as now my shoulders are on fire, my chest aches and I am tired....but hey I'm happy. I walk into each room and look around and I'm happy...yes Dr Lil & Cuz S I agree that I am most likely stupid and irresponsible for embarking on such a mission as recently I've been complaining about being tired. I fully expect your phone calls or bbm's insulting me.
It was worth it though because it's nice knowing everything is in place where I left it. Control freak much? Most def and it seems it's only getting worse as I get older.
Anyway I'm off to get ready for evening service...apparently its going to be a Celtic style service, sounds interesting :)
Title - Control by Janet Jackson.
Saturday, 4 June 2011
Its only words, and words are all I have...
Music isn't my first love, heck for the longest time it wasn't even a love. So it's really weird, to me at least, that I seem to have this musical love affair going on in my life at the moment...perfect example, my post titles.
Title - Words by Bee Gees.
I'm a book person, always have been, hopefully always will be. I have been known to throw tantrums if I find myself without reading material. As a child I fought wars with KK over who got to read a book first. Once I even got my poor mama to phone around late at night looking for a book for me to read...she found me one because she knew no one was sleeping that night if she failed.
Then Steve Jobs came along with the damn Ipod and made it easy for me not only to access music but to carry it around with me. Also I could download a song without buying the whole album...damn him!!! So now I find myself cheating on books with music. And what's worse is that I'm listening to all kinds of music, I'm giving all and sundry a try. I never did that with books....Stephen King books...over my dead cold body will you catch me reading one, and never ever again will I pick up a Danielle Steele. As for James Patterson....hmmph he's on my ish list with his damn Alex Cross (seriously I refuse to believe that dude is black!!!!) and lets not even mention the one where Alex Cross goes to Nigeria.
But music...look at me buying Vivaldi's Four Season's (Spring rocks!) in one moment and then Artful Dodger in the next (re-e-wind, let the crowd say bo...lovely memories). So I'm definitely not a music snob though I stopped short at getting Whigfield's Saturday Night, even though I really wanted to.
However, the songs I like the best are the ones that like I've mentioned before 'speak to me'. Where the words in a line or a verse just strikes a chord within. I remember reading a quote somewhere once that said something like - a song will always outlive a sermon in your memory.
So I guess that's where my love for books and my love for music connect...words.
That's it. I'm in love with words.
What a post. Maybe Mr OD is right, I may not be sober tonight :)
Title - Words by Bee Gees.
Wednesday, 1 June 2011
Regrets and mistakes, they're memories made...
Title is from Adele's song Someone Like You. I've got her album 21 on constant replay at the moment, which is probably a huge mistake as a couple of songs on there are thought provoking...but I'm loving the album too much to stop.
Anyway this particular lyric struck a chord. 'Memories made' to me implies you can think of them with something akin to acceptance or resignment. I'd love to think of my regrets and mistakes like that instead of them being past moments/events which sometimes when remembered still cause deep distress....note slight exaggeration going on here, some of them when remembered just cause deep embarrassment and shall never be spoken of.
But then I'm a believer in fate, whatever things I did or didn't do/paths I took or didn't take, distressing/embarrassing, led me to the life I have now. It's not perfect by any means but it's pretty okay. So I'll be alright with my regrets and mistakes being memories made but being the person I am, I'm sure sometimes they'll still cause distress and most definitely embarrassment.
And to totally digress but inform....writer's block still very much ongoing unfortunately. I have the story ideas, it's stringing the words together coherently that eludes me, very frustrating.
And another digression but one related to original topic....Lady Antebellum's Need You Now just came on Ipod, that line...said I wouldn't call but I lost all control...bad bad seriously bad embarrassing memories!!!
Anyway this particular lyric struck a chord. 'Memories made' to me implies you can think of them with something akin to acceptance or resignment. I'd love to think of my regrets and mistakes like that instead of them being past moments/events which sometimes when remembered still cause deep distress....note slight exaggeration going on here, some of them when remembered just cause deep embarrassment and shall never be spoken of.
But then I'm a believer in fate, whatever things I did or didn't do/paths I took or didn't take, distressing/embarrassing, led me to the life I have now. It's not perfect by any means but it's pretty okay. So I'll be alright with my regrets and mistakes being memories made but being the person I am, I'm sure sometimes they'll still cause distress and most definitely embarrassment.
And to totally digress but inform....writer's block still very much ongoing unfortunately. I have the story ideas, it's stringing the words together coherently that eludes me, very frustrating.
And another digression but one related to original topic....Lady Antebellum's Need You Now just came on Ipod, that line...said I wouldn't call but I lost all control...bad bad seriously bad embarrassing memories!!!
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