The Inconsistency of My Illness Causes Me Fear
When it comes to chronic illness, no two days are the same. The inconsistency and unpredictability that come with a chronic illness is what gets me the most. One day I could be out and about, running errands, meeting friends, working out and the next day I'm bed bound, or visa-versa.
An example of this is last week I had a great week, I had high(ish) energy levels and my pain was there, but bearable. Then, out of nowhere, I wake up unable to move my right hip and right leg. I was limping and in pain all day. I had to use a crutch. I had plans to meet two of my friends. I was going to cancel as I felt embarrassed that I had to use a crutch. I decided I needed to do this, or I never would. I want to stop this illness from controlling my life, and rather I control this illness. Using a crutch, in public, is one of my ways of controlling my illness.
Like it never happened
The next morning, I wake up like none of that had happened. I don’t understand! I’ve stopped trying to understand the causes of my symptoms. Instead, now I just take the symptoms as they come. I track everything in my journal, hoping to find some patterns, so far, I have not.
I don’t know about you, but for me, this takes a toll on my mental health. I love to plan. I find since I can't rely on my body, I can’t make plans. Often, when I do make plans, I end up having to cancel. This disappoints them, but it disappoints me a lot more.
My mind and body are not in sync
In my mind, I want to do these things, I am able to do these things. I’m a 23-year-old woman, I want to be out living my life but no, I have to listen to my body or there will be severe consequences. I’m watching my friends and other people my age live their lives without these consequences. This upsets me. I then realize that there's no point in dwelling on things I cannot control, but instead I need to help myself.
Since starting Cosentyx over 6 months ago, I'm getting better and better each month. So, I think, in another 6 months maybe I will be able to do more. Maybe I will be able to do the same things as my friends, just with adjustments like resting, stretching, etc.
I would love it if my illness was consistent. I would love it if I was consistently well but that’s not going to happen. The inconsistency of my illness brings me a fear of the future. I think, what if I go do this and I feel sick, how will I handle this? Or for example, I have been invited to two weddings next year and while I shop online for dresses all I can think about is what if I’m feeling sick on the day, or what if I’m in too much pain or too fatigued to go.
I have many worries about the future, that I will go into more detail about another day. All of these worries are caused by the unpredictability and inconsistency of my illness. Can you relate to this inconsistency and fear?
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