Building Myself Up Yet Again After Another Sickle Cell Crisis
At the start of the year, I challenged myself to have zero sickle cell crises. I knew this goal was ambitious and something I’d never done as an adult, but I wanted to try. Putting it out there in the universe was my way of holding myself accountable. The column kept me grounded when making decisions that could potentially lead to a crisis.
Unfortunately, right at the halfway point of this year, I had my first crisis. It wasn’t one particular choice that caused it, but most likely a culmination of all of life’s events leading up to it. I had traveled, was about to start a new job, and had significant life stresses. In hindsight, these life events were a recipe for a crisis, but you can’t account for everything in life.
Before the crisis, I was working on my body by exercising, eating well, and keeping up with my vitamins. I’m guessing this was one reason I physically recovered so quickly after the crisis. I went from being unable to walk to struggling to get into a wheelchair to walking at a slow pace in two days. By the fifth day, I could walk around again and slowly find my rhythm.
Unfortunately, my mental recovery wasn’t as fast. The familiar feelings of defeat and sadness about having sickle cell were recurring themes in my mind. I was battling these thoughts internally while outwardly I was telling myself it was OK to have a crisis. These vocalizations were supposed to convince me that I was fine, but I wasn’t; I was a prisoner in my mind.
As much as I tried to escape this prison of hopelessness, the shackles seemed to bind more tightly. I withdrew from those around me and found it challenging to communicate. My speech was less audible, which meant I was constantly repeating myself. The unhappiness continued as I realized the crisis had sucked all my energy to communicate and act like my usual self.
The rapid physical recovery turned bittersweet as my mind couldn’t keep up with the demands of everyday life. It took two weeks after my crisis to gain some semblance of contentment. Then, finally, I began to believe and have hope again in myself and my situation.
This crisis was a painful reminder that I still have more work to do mentally to cope with the strain of a crisis and the stress of life. In hindsight, I wasn’t coping well mentally with everything that was going on in my life, and it all took its toll. Post-crisis, I should’ve given myself the time I needed to heal physically and mentally.
I was stoked at how quickly I recovered physically by day five and felt I should’ve completely healed. However, when my mental state didn’t meet my expectations, it caused even further mental sabotage. Now I’m preparing to get back to a routine of physical exercise, good nutrition, and therapy to build myself back again. This crisis reminds me that I still have plenty of work to continue to self-acceptance.
Although I haven’t been able to avoid having a crisis this year, I’ve learned a lot about the process of recovery. I’ll start again now with renewed hope that I’ll be stronger and more capable of managing my condition than ever before.
Note: Sickle Cell Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sickle Cell Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to sickle cell disease.
Comments
John
Thank you for this personal inside look at what a crisis can feel like. My son has SS & is struggling mightily with himself. He is depressed & hopeless, at times. It always helps us to hear others describe their personal journey & challenges.
Dunstan Nicol-Wilson
Hi John, thanks for your response. It can be difficult for both parent and child, I hope you are able to work together and overcome the challenges in your personal journies. Have hope!
Metin Teski
Dunstan thanks a lot to encourage Sc patients to do right things like going to a doctor for mental health. Ege, a 9 years old relative of mine, has SC and at least he has to stay in hospital because of his pains 2-3 times a year. He can not go to school. He is usually depressed. Everybody is trying to help him at home but not professionally. From today I will try to have his parents to have professional help. Thank you again!
Dunstan Nicol-Wilson
Hi Metin, thanks for your response. I'm sorry to hear about your relative, I hope you and the family can support him through his journey!