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.
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