Having sickle cell anaemia comes with a lot of trials and obstacles in life. Growing up I wasn’t able to play and do all the things kids did without fatigue setting in moments after; I’d be short of breath, tired, sore and sometimes this could lead to a crisis. I remember back in primary school when the school organized a fun sports day, I had the bright idea that I wanted to do the hurdles race. I had long legs and felt like it would be fun to do that race as I had never done anything like that before, and it was. I scaled over each bench that was put as an obstacle with ease, moving at the speed of light in my mind, I came 2nd to last in that race by the way. Either way it was very exciting and I had lots of fun in that moment celebrating with friends, 10 mins afterwards though I would find myself waking up in the nurse’s office. I had apparently passed out and I was sore when I came to (woke up). Thankfully a little rest did the trick this time and I didn’t have to spend a week in hospital bed, but stress and fatigue can definitely lead to a pain crisis for me.
Imagine your worst period pain if you’re a lady multiplied by 10 all over your body and concentrated in your joints. My brother once described it as having an open sore and having someone continuously poking it with a pin, I think that’s the closest and best description of the pain. My pain however has evolved throughout my lifetime. When I was much younger the pain was mostly concentrated in my stomach. I would have stomach crisis which was apparently the cause of splenic sequestration, which is a complication of sickle cell disease. There are a multitude of complications that accompany sickle cell which I would later experience in life.* As a teenager the crisis pain moved into my joints and would have my first and thankfully last aplastic crisis. This was the most critical form of anaemia where my blood haemoglobin dropped to 4.5 from a base regular of 6.7 which wasn’t that great to begin with because I was anemic. In college, I developed a leg ulcer, another complication of the disease. In addition with having multiple blood transfusion and the standard minimum of three crisis in a year, I was also told I had gallstones. My doctor dismissed it as not being a big deal and said I should be fine if I just drink lots of water.
Staying hydrated was and is always the cure for everything. Every time I ended up in the hospital I was told it was because I was dehydrated. Unfortunately however, water would not be able to cure the gallstones growing in my gallbladder. It wasn’t until I went to America for holiday that I would have one of the worst crisis of my life. My mum had gone on a trip with her brothers and I was with my sister and brother in law who had never seen firsthand what a crisis looks like, he took it well. I was rushed to the ER and was finally admitted and given pain meds. They ran tests and realized in one day I had an overload of gallstones in my gallbladder. I was immediately scheduled for surgery to take out the gallstones. I had a whole lot of emotions at once…panic, fear and anxiety set in, I’d never had surgery before. Luckily I had great doctors that reassured me everything would be fine and I wholly put my trust in God.
A few years later, I lost my brother to sickle cell. Words cant accurately describe how I felt when I heard, I was numb all through, a piece of my heart had died. A month after his passing I found myself in the ER again, this time I had had a silent stroke. A lot came with this stroke that would change my life and how I would manage my sickle cell from then. I would need a blood exchange every other month (6-8 weeks). The procedure takes out my blood to get the sickled cells and puts in healthy normal red blood cells back into my body at the same time. Due to the fact that I have tiny to invisible veins, I have something called a mediport to make this constant procedure easier. Another minute surgery but I was awake for this one.
It is important that I still live my life as normal as possible and not let sickle cell anemia define me. I have learned my limits even though I still push the boundaries sometimes because life. I try not to stress myself too much, rest as much as possible, take all my medications, avoid smoking and drinking on a regular basis and most importantly I’m trying to drink a boatload of fluids. Let’s be honest drinking only water all day everyday can get incredibly boring but mixing in a little juice or soda can help. (All the water is supposed to release the clumps being formed in the bloodstream). It is highly important that one must try to have a positive outlook in every situation. It can be very hard at times not to ask why me in certain situations that you might find yourself in due to the disorder, but it is important to stay positive and trust in God. I’m blessed and privileged to have a loving and caring family, but I’m not oblivious to the fact that other people around the world do not have as great a support system or as many opportunities that I have been blessed with. My heart breaks for people with sickle cell who neither have the education, medication or means to take care of themselves. I have been diagnosed with sickle cell but sickle cell does not have me.
My advice to other people with sickle cell apart from the obvious keep stress to a minimum and stay hydrated, is to also know what triggers your crisis. For instance, anxiety is a trigger for me. I would always find myself in the hospital during exam period, either a week before the exams started, or the day before the paper I dreaded writing and was the most anxious about. As soon as I realized that pattern, I made changes to help me cope better with it which has helped immensely. Know your body and your limits and do not fall prey to peer pressure. If your friends are encouraging you to go out and you know you’re not feeling up to it, please stay home and rest. If you need a personal day off work or school because your body is giving you warning signs, please take it. That month’s salary is not as important as your life. To the people who have this disorder and have no support systems in place to help you manage it, go into your community. I know the sickle cell foundation in Nigeria is a great place to start, they can provide you with the education and medications you need to help manage and better understand sickle cell. There are sickle cell organizations all around the world, all one has to do is research to find out where. You should surely have access to the internet if your reading this blog so educate yourself, post that you need help or that you don’t understand your symptoms; utilize social media to the best of your abilities.
To the friends of people with sickle cell anemia, please try your best to just be there for your friend at all times. Treat them as you would any other friend just being aware of their limits. Do not pressure them to do what they are not supposed to be doing, like drinking or smoking or anything you know will stress them out. Please do not alienate them when you find out they have sickle cell or you witness a crisis firsthand. Just try and support them when they are sick with laughs and smiles because laughter truly is the best medicine. For that moment you are there with them, make it your mission to help them forget they are in a hospital bed.
Thanks for letting me share my personal story and I hope to come back and guest post a bit more on my surgery experiences with you soon.