All the things people with chronic and terminal illness wish you knew

Hello lovelies!

 

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Soon, all of this weight you are carrying will fall gently away. Soon you will find peace, soon you will heal, soon you will find your joy and light again. | Writing by Nikki Banas - Walk the Earth | Inspiring Quotes & Poetry about Hope, Healing, Recovering, Moving Forward, Change, & Faith.

 

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A bit of real talk- being Chronically ill is a hard pill to swallow. I developed empathy when I met my partner, who struggles with a terminal illness. I only gained understanding once my health started to decline. That’s what I realised- some things require going through and only then does it all make sense. Then again, it’s all relative, isn’t it? If you’ve been here a while you might know that my partner has a lung condition that affects only 1 in 100,000 individuals. That’s a 0.001 chance. As he so put it to me, he’s well and truly won the genetic lottery. Hell, he’s out of breath walking to the mailbox. Being with him has made me kinder and more aware of so much.. our relationship has always been incredible strong because we truly hear each other. Some days it feels like we are each other’s life support.

Up until the last year and a half, I only experienced mental health issues. The very worst of it, it felt like, but that’s what it was. To struggle physically was new to me and really confronting, because I’m supposed to be in the prime of my life. I don’t want to feel constant, bone deep exhaustion. I don’t want to worry about falling off my chair out of sheer fatigue. It’s the worst feeling.. trying desperately to keep your eyes open when all you want is to succumb to a deep sleep. Not a refreshing one, mind you. I can’t remember the last time I woke up feeling like I’d slept more than a few minutes.

Nobody knows how to react to sickness until that’s them. It’s like having a sore throat. When you’re in it, you remember just how terrible it is. How acute your senses are. How you feel yourself swallowing.. every.. single.. time. Then, when you feel better, you forget. Imagine living with constant pain. I get mixed reactions when I tell people or have them find out about my gastroenteritis- yes, it was meant to be short term, self resolving withins days or weeks. No, it did not do that. It is not like the common cold, where you get better and better over a period of time. There is nothing linear about it and that’s what I can’t wrap my head around. Having such an unpredictable illness, where I can be vomiting and unable to get out of bed one morning, fine a few hours afterwards and then sick again days later, makes it impossible to make plans. It’s almost gotten to the point where I don’t feel like I can make commitments without running the risk of breaking them.

Social events are draining beyond measure. The noise, what seems like crowds of people. The facade of being a functioning person. That mask is so worn it’s falling apart. I tend to refrain from eating in front of others because I genuinely can’t predict how I’ll feel minutes or even moments after!

It genuinely breaks my heart not being able to follow through with the things I want to. I feel terrible when my missing something impacts somebody else. I hate it when people ask me how my attendance is, knowing full well that the 30% of the time I’m not in classes, I’m hardly off having fun. It gets old being told that I’m self sabotaging or need to make more of an effort when some days it’s beyond my capability. I wish I was understood when I explain that I’m doing all I can and in many ways, actually going above and beyond. When a new doctor asks for my medical history, I feel like handing over a book titled “The neverending story!”

Brain fog, a very common symptom of chronic illness, means that I can’t always remember people’s names, despite knowing them for a while. This even happens with my best friends. It’s like in one ear, out the other, but so much more frustrating. Plus, you get really funny looks when you admit you don’t even know who you just talked to. I just hope one day the haze will be lifted. Sometimes I can’t remember what day it is or what I was about to say. Other times I could sit and stare off into space for twenty minutes, completely and utterly lost in myself and the internal dialogue I’ve got going on. Sometimes I’ll think I’ve lost something, like my phone or keys, then realise they’re in my pocket.

The ultimate invisible illness. I don’t always know who I am and being sick makes me feel like my path is shrouded in darkness. I always need to find a source of illumination. I don’t want to think about how my illness will inevitably get worse with age. Fear of pushing myself too hard and making my symptoms worse is something I think about a lot. When most of your commitments are non negotiables though, it’s a bit different. Some days I’m stuck in the limbo of sick and healthy.. the ever present fluctuation.

Ultimately, I’ve realised that I’m resilient.. much more so than I thought. Beyond measure, in many ways. Certain things that used to strike me as challenges don’t even make the list anymore.

maryam-e1555487221288

6 thoughts on “All the things people with chronic and terminal illness wish you knew

  1. Thank you for sharing this, Maryam. It was heart-breaking to read, and I was completely unaware that you suffered from a chronic illness. It just goes to show that it truly is invisible to the eyes. I hope you are well. Maybe the lack of social events these days can bring a comfort to you. Or maybe not, but we’ve all got to see the best in things. At this difficult time, it is so easy for me to be selfish but there are people out there suffering much greater than me. Please stay safe, Maryam, and I hope you are well 💕

    Liked by 2 people

    1. Thank you Erin for taking the time to read and comment! Much appreciated ❤️

      It’s true.. it’s really the nature of things. Lots goes unseen, unheard, not thought of. That’s why it’s so important to always be kind and uplifting! Simple life motto x

      Liked by 2 people

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