Updated: Nov 11, 2019
You know them ones when you haven’t been ill for a while and you forget what it feels like? Well that was me and as I was approaching my 7th month without a crisis the cold weather handed me a rude reminder of what it’s like to be in pain.
I woke up with a sharp pain in my left leg. Describing a sickle cell crisis is something that I’ve always found difficult but I’ve watched YouTube videos where fellow sickle cell warriors would describe the pain as “worse than giving birth/a constant “hammering”, “stabbing”, “throbbing” feeling/worst than getting shot”…
I personally cannot describe the pain in those ways because I’ve never actually had those experiences before. But I can say that the pain is terrible. It’s disabling. Simple tasks that I could have easily done without a second thought, I can no longer do. I remember that day; a simple 10 second walk to the bathroom took me a good 5 minutes.
When I fell ill I was in complete shock, and I kinda forgot about how I’d normally react to it. The initial plan was to wait it out until the pain ends…I was lying in bed for around an hour without doing anything then I realised I’m actively not doing anything to improve my situation, which could potentially put my health in a worse state. So in an attempt to better my health I did a few things, which usually help speed up my recovery.
(Those of you who don’t have sickle cell please keep these points in mind so if you ever come across someone in a sickle cell crisis you’ll have a few things to suggest).
Tell Somebody - When in pain there are so many things that you may no longer be able to do for yourself so its best you tell somebody about how you’re feeling so they can help you out, be specific with what you’d like them to help you with. I find that when I’m ill, I’ll usually need someone to prompt me to eat/use medicine on time because if left to my own devices I’d probably doze off and forget. Sometimes I’ll just need help with making things more accessible, I’d ask for all the things I’m gonna need to aid my recovery to be brought to one room so that I don’t have to walk around in pain looking for everything. You also need somebody to just check up on you regularly, to see if you’re feeling any better or to see if you may need official medical attention.
Painkillers - Because I hadn’t been ill for a while, I decided not to go straight into using the strongest painkillers I have, so I took a couple of paracetamols and waited for them to kick in, if I felt no difference I would have used something a bit stronger like codeine and if that didn’t work I’d use
Hot Water Bottle - My hot water bottle is my best friend, especially in these colder months. Whenever I’m ill I reach for my hot water bottle ASAP. Placing the bottle over the area that’s in pain is very relieving. The onset of a sickle cell crisis is due to the sticky sickled shaped blood cells getting stuck in the blood vessels which restricts blood flow and deprives the tissues of oxygen, a hot water bottle could aid in reducing the pain as the heat causes the blood vessels to dilate which helps with increasing the blood flow. The warm sensation is also a small distraction from the pain.
Distractions - One thing to do when in pain is to not focus on the pain, distract yourself!!! Do things that make you feel good. When I’m ill, I’d either call a friend, watch something that makes me laugh, listen to music or sleep…literally anything to get my mind off the pain.
Eat - I love food and on a good day you wouldn’t have to tell me twice to eat something, but when I’m ill my appetite vanishes and is nowhere to be found for the duration of my crisis. This is problematic as your body needs the nutrients and it’s likely that the medicines you’re using to aid your recovery require you to use after a meal.
Stay Hydrated - As someone with sickle cell, staying hydrated should always be a priority, and when in a crisis it should be even more important. In addition to warmth, staying hydrated also helps with increasing blood flow.
Rest Up - It does not help to put your body through extraneous activities while experiencing a crisis. The body is already in a weaker state and doing too much can cause the crisis to worsen, all you should focus on is recovering. I say if possible postpone all your plans and just relax, get your strength back and try not to put your body at further risk.
Positive Thinking - Experiencing a crisis after being pain free for a while made me feel very upset and frustrated. Old and familiar thoughts resurfaced, I started thinking “Why me?” and I started comparing the difficulties of my life to the seemingly stress free life of those without sickle cell…safe to say that that train of thought did nothing to improve the state I was in. It was only when I consciously changed the way I was thinking that I was able to look after myself with more enthusiasm, I was more optimistic, thinking “Yeah this medicine/hot water bottle/rest is gonna work for me and I’ll be back to my usual self in no time”. I honestly believe that by simply having a more positive outlook on life, irrespective of what may be going on, will help you get through it.
So to all my sickle cell warriors, keep your heads up!
Written by: Tito Oye