Going Through It
It's been a while since I’ve been able to write. I tried several times and think I convinced myself I had writer's block. I didn’t though. The truth is, I was going through it.
The psychological effects of sickle cell
People think that once you are not in the hospital or not in a lot of pain, you are automatically better, but that’s just half of the process. In reality, it takes a lot to get through what we go through with sickle cell, especially the psychological elements of it.
To make things even more difficult, no one from the medical field actually seems to care about the psychological effects of what we have experienced; they send you home with pain meds and leave you to fend for yourself.
Going through it
I found myself in a headspace that just revolved around feeling and being unwell. I was taking so much medication that I didn’t feel or even look like myself. For a while, I began to think that this was my new normal.
My days revolved around spacing my medication evenly throughout the day and forcing myself to eat and drink. Every time I had a hospital appointment and hoped for some improvement, I would end up leaving with something else to take or a higher dose of what I was already taking. I just felt like I was getting worse and worse. I hated this life.
It all changed in a split second.
Stopping sickle cell treatment
I woke up one morning and decided that I’d actually had enough. If that was going to be my life then there was no part of it I wanted to savor. In that moment, I just decided that I was going to live how I wanted to live for as long as I could. I no longer wanted to be in the sick, deteriorating state I was living in.
For me, that decision was no more medication and no more hospital appointments. I just wanted to be happy and I just wanted to feel free. And so I was.
Three things took me from going through it to getting through it.
1. I believed there was another option.
I have always been a positive and somewhat logical thinker. Logic told me that if I was taking all this medication and nothing was helping, then surely there was no point in taking it. In that moment on that morning, I felt as if I had allowed doctors and healthcare professionals to take control of my heath for pretty much my entire life. Whatever they said or suggested, I did no matter what the consequences; which were sometimes serious.
I had got to a stage where I started to think of other people who survive with sickle cell without any access to healthcare. I thought to myself there has to be another option than taking medication that makes me feel terrible several times a day and causes side effects worse than the issue I was taking them for in the first place.
2. I needed things to be on my terms.
At this point, I was so fed up with everyone else having control over my health. I was also sick and tired of no one taking any accountability for things not working or going wrong. I had lost trust in the National Health Service (NHS) but I trusted myself and my whole life experience of living with this condition more than I ever had before. If anything else was going to go wrong, I wanted it to be my decision. At least then It would be on my own terms.
3. I wanted to be happy.
I thought of the place where I am always at my happiest. That was where I needed to be. I was in such a state that I needed to remind myself of what being happy felt like. My memory of happiness wasn't enough. I needed to feel it. If it was the last thing I did, it would be worth it for me.
In the end, these three steps were the best three things I have ever done for myself. They saved my life.
Not everyone agreed with the decisions I made but I had to remind myself that I am not living for everyone. I am living for me.
Have you had a special caregiver in your life?