Chantelle is a 23 year old woman who lives with sickle cell in Bradford and London. She is writing a series of blogs for the Sickle Cell Society to make her invisible life more visible.
I’ve been meaning to update you since way before Christmas but every time I got around to writing something, another thing happened, whether it was being admitted to hospital once again, celebrating Christmas, or the New Year.
First up, I’d like to know your thoughts on the name change. Do you prefer Diary Of A Sickler? Or My Invisible Life: Sickle Cell? I understand some sufferers don’t like the term ‘sickler’, however I personally don’t have any negative feelings toward it. To me, it’s just another term for the condition, the same way a diabetes patient is called a diabetic. I’m interested to know what you think so leave me your opinions in the comments please 😊
Now, my new years ‘resolution’ was to become selfish. Not selfish in that I’m not going to share my chocolate bar or give up a seat on the bus, but selfish in that I will put myself first when it comes to my health. Unfortunately, we’re only 3 weeks in and I’ve already failed!
I had a constant ‘minor’ crisis in my chest, shoulder and cheek/jaw for almost 2 weeks. I didn’t go to a hospital day unit because, as always, I didn’t want to put my life on hold. I know I should be sensible and get checked out to prevent it turning into something more serious, and I would strongly advise anybody having a sickle cell crisis to do so to prevent complications. A part of me wishes I would take my own advice because (1) it would put my mind at rest and (2), I’d get more effective treatment than my prescribed painkillers – tests would be carried out to find out any underlying symptoms.
The other part of me knows that if I took myself to hospital, even though I felt I was managing my symptoms well enough at home, I still would have been admitted as an inpatient. In my experience, it would be for anything from 3 to 10 days and as always for me, it would mean more time off work, and falling behind on the college course I’ve recently started. Putting my life on hold is not something I enjoy doing and stupidly, when the pain isn’t crippling, I battle on as best I can.
To the Sicklers – put your health first. If you already do, good for you and please make sure you continue to do that. Don’t do what I tend to do and wait until the pain is unbearable before seeking medical advice. It’s not worth it, it just prolongs your suffering and could lead to further problems. I encourage you to get checked out at the first sign of an unusual, persistent or extremely painful crisis.
I’m going to set myself the same promise (again) and commit to making my health my priority.