The reality of being a high-functioning human with an intense chronic illness

**LONG POST AHEAD** - Sorry for the long post, I got typing and words just kept coming. This post is not meant as a "complaining" post, more of just a rant, to get some things off of my chest.

Today I received my letter of admission to my surgery. In two weeks, I will be going in for my operation, (as long as no emergencies come through before then). And it got me thinking.

Over the past couple of months, I have noticed an increase in my symptoms as well as becoming hyper-aware of how my body has been acting.

A few months before Christmas, I was on a very high dose of steroids to help keep me as healthy as possible until my surgery was closer. One of the most prominent side-effects of being on prednisolone is an extreme increase of appetite and weight retention. Whilst I was on about 50mg – 40mg I was so hungry that I was regularly eating 4 or 5 meals a day. I was constantly hungry and was always snacking. This caused me to gain ~20kgs in about 2 months. It’s a crazy feeling going from 55kgs to 72kgs. There was weight sitting in places that I’d never had it and my body had stretched so much that I now had stretch marks on the tummy, my legs, my butt and my boobs. Now, this is NOT me trying to body shame people with weight or stretch marks, I had some before now…. This is just me saying that so much change on MY body in such a short period of time was a shock to my system and greatly affected my mental health and all of the body positivity I had built up until now. It was hard to look in the mirror and see a body that I was not used to. It’s expensive gaining weight so fast! I had to buy new pants, new bras, and new shirts. Since then, I’ve weaned myself off of the pred and my appetite has returned to normal. I have lost about 5kgs but am still feeling very frumpy bumpy and am not happy with my body at all. I’m hoping that post surgery, I can work hard on returning my body to the condition it was in before.

On the left, is 2016. On the right is about a month ago. They don't look super different side-by-side, but I feel very very different body-wise.

Another symptom of being ill is extreme fatigue. I am tired all the time! No matter how much I sleep, whether I get up early or sleep in, I am mentally and physically exhausted. This is made worse by the fact that I find it hard to sleep. Whenever I go to bed, it always takes me ages to get to sleep, often tossing and turning for hours before finally dropping off. I also very rarely sleep through the night. I am either up a few times throughout the night going to the toilet or I am awake with muscle cramps or a busy mind…. Or a combination of all three. Broken sleep leads to never feeling fully rested and always hankering for an afternoon nap.

Now, being the stubborn person I am, I push myself to work hard at my waitressing job, my studies and/or my (limited) social life. I pull regularly on the Spoon Theory, and after putting on a brave face to go to work and be pleasant to multiple customers as well as being on my feet for 3 – 8 hours per shift, most of my spoons have gone. On my days off, I try my hardest to rest, but with all my spoons having been used up during my work days, I tend to use my days off for chores and errands, which in turn, uses up my spoons too.

Not only do I have physical fatigue, but also mental too. Throughout my sickness, I have developed depression and anxiety. Through talking to a professional as well as taking daily medication, I have my mental health relatively in control. But there are days when my brain has just had too much, and I find myself with a tightness in my chest, a shortness of breath, and the overwhelming need to cry. These episodes don’t seem to be triggered by anything, just by brain and my body being utterly exhausted. Most of the times, I can get myself calm again, but its still not a pleasant feeling to have happen. They are also often followed by a lapse into ‘sadness’ which will often take a few days to pass.

All of these plus the general aches and pains that happen every day to me are what is keeping me hanging on for this surgery. Here’s hoping that it does happen in two weeks… and here’s hoping that my body improves!