Give me my damned meds!

One of the many side effects of sickle cell is opioid tolerance. This basically means that over time and use, the body builds up a tolerance to opiates used for pain control.

Gone are my younger days when a dose of less than 5 milligrams of Morphine got me over the initial crisis attack.  Now I have the pleasure of 10mg of Morphine every 4 hours (in the UK A&E, 3 doses and you're admitted.......locked in against your will).

In Nigeria, the drug combination strategy is preferred.  This usually involves Morphine and........wait for it..... 100mg worth of Diclofenac Sodium Suppositories!!  It’s a surreal experience when you actually look forward to a nurse shoving her finger up you arsehole.

I've never understood drug addicts. Taking opiates for a casual high seems like such a waste. I mean from the lethargy, to the hallucinations, the constant itching, and the constipation, why on earth would you sign up for that?  

Anyways I digress.  Opioid tolerance is the main reason why I ABSOLUTELY HATE hospitals.  There are other reasons but we'll get to them later.........

Pain is a sensation that the human body puts out because there is something wrong, that usually comes with a visual i.e. you break your leg - you feel the pain and you see a mangled leg.  The clusterfuckery of Sickle Cell is that there are no visuals.  The other issue with the pain is that it doesn't freaking stay in one place!  It would start in your left leg and then an hour later its moved up to your back.

As a casual bystander, take that visual - or lack thereof - switch and visualise yourself as the doctor administering narcotics.   Now add to the scenario the fact that you have already administered the max dosage and your patient is still screaming stating that the pain has moved to another body part.  Shady innit?

This is the scenario I am faced with EVERY time I have to go to a hospital without sickle cell protocols, and overly suspicious doctors. 

Which leads me to another reason why I hate hospitals.......... Shear bloody ignorance.

While I understand that the medical professionals have to deal with actual addicts looking for their next fix, it is - pardon the pun - a pain.

The phrase "But you look really healthy" is one of the most infuriating statements one can hear while they are doubled up in pain begging for pain relief.

Because of these perceptions I made some stupid decisions as a young buck. First, I'd wait at least 6 hours before I would call an ambulance to take me to hospital. Second, I would allow a doctor to ration my meds on the argument that they don't want me to become an addict. Both actions made me miserable because I'd be out of commission for more than a week, with another week to get 'back to normal'. 

This was my mode of operation until a sickle cell specialist nurse broke it down to me. Simple fact - the longer a sickler is in pain, the longer the recovery time.  Remember those muscles tensed up because of the pain? The longer those muscles are tense, the longer it will take for you to recover post-crisis. So while a doctor is pontificating on whether a sickler in pain is a drug addict looking for their next fix, their recovery time is being extended. 

At that point I became empowered. I started to ask questions about my treatment.  So for those of you out there still trying to figure out you own protocol, here is mine

1.    Identify what kind of crisis you're dealing with;

o   The Creeper: these ones you can manage at the start, but when they start to crescendo with pain meds......... go to the hospital

o   The Woosh: these ones catch you off-guard in the MOST awkward of situations.... don't worry we shall talk about that later.  They come fast and hard (yes that does sound dodgy) and they can literally take your breath away. Immediately you identify a Woosh, do not stop at Go, take a pill or try to manage that mutherfucker  - make a beeline to the hospital.

2.   Pain Meds: Demand them IMMEDIATELY.  You are allowed to bargain with your doctor regarding dosage.  This is however dependent on your relationship with your doctor.  I would recommend that you see your Consultant Haematologist at least once every 6 months even when you aren't ill.  Where there are records of your self-management there is less suspicion of you being a junkie.

3.   Fluids: get ready Wizz like a Mofo.  During a crisis your vessels are literally clogged up with ill-fitting blood cells.  The fluids help flush out the clog and keeps the blood moving. Failing that you run the real risk of having a stroke.  Fluid delivery can happen one of two ways;

1.   By Mouth: this is my preferred option, however dependent on the pain it can be a tug-of-war with the nurses on the efficiency of this method

2.   By Drip: the doctor's preference.  Its more efficient and they can infuse antibiotics, and other medication without having to stab the patient further. Reason why I hate it? You need to get stuck in the vein with a needle. 

Hypodermic needles are colour coded by size:

·      Brown – Big Man dem type veins

·      Green – Normal size veins

·      Pink – Little girlie type veins

·      Blue – Baby type veins 

Inexperienced doctors will turn you into a pincushion.  I warn doctors coming near me to only use the blue needles and because after 33 years of sickle cell experience I have the veins of a junkie.  So know your needle size and let the doctors know!!!

4.    Oxygen: Get that mask on and be prepared to Breathe In, Breathe Out.  Why?  Your body at the time of crisis is starved of oxygen.  As I stated before, pain is a sign that there is something wrong – so more oxygen, less pain.  Ironically, the lack of oxygen can also trigger a crisis so it’s always good to do some breathing exercises when feeling low.

So the next time you have to go to the hospital (I hope it’ll be not in the too near future, but don't be fooled – it will happen) be equip and take control.   Be demanding, ask questions and let the doctors know that while you are a patient, you are also an expert in your field – YOU.

Toodles!