I used to think of Chronic Illness as a burden.
It was a big life change, and not the breezy skip down the yellow brick road, or the ‘I found a Prince Charming’ ending.
I used to see Chronic Illness as a thief; one that stole more from me than your average burglar.
It stole things from me that could not be easily replaced – my independence, my yearn for life, my happiness, my feelings, my body and health.
Everything was suddenly different.
To sum it up, Chronic Illness is shitty.
It is the shittiest thing that someone can have happen to them, and yes, it’s lifechanging and downright devastating. If this were a ‘choose your own adventure story’ I would not be choosing the Chronic Illness path by choice. I mean, who WANTS to feel this sick every single day?
As I approach my one year of illness, and since being diagnosed with Gastroparesis, I can’t help but reflect. SO much has happened in the past year, and it seems like just yesterday that my world turned upside down. I can tell you that I did not think I’d live to see this day. A year of hardship; medications, unemployment, Depression, trials and appointments.
This is only one year of me being sick, so I find it hard to imagine how other sufferers of decades feel.
I could speak about the shitty stuff endlessly, but today I want to chat about something different;
what good has come from being ill?
What have I learnt?
I have grown a greater appreciation for sufferers and for their families.
My blog has opened me up, and early, to sufferers worldwide. I became overwhelmed; thankful that I was not alone, but equally sad and afraid for these people. I didn’t even know these people, yet I wanted to save all of them; fix all of them.
I knew exactly what it was like as an individual and for families.
I felt the disheartened stare from parents and loved ones; the stare that was made up of partial disappointment, loss and uncertainty. The person they had raised or grown up with, was not able to be easily fixed.
A piece of my heart lies with each of you. I know how tough it is, but we (the sufferers) thank the heavens each day that we have you in our lives.
I am thankful to have YOU in MY life.
To which I have learnt how to love greater than I ever have before.
My heart literally tripled in size.
I love everyone, and I want everyone to be loved.
If I could hand out hearts and spoons all over the world, I would.
I have found myself being more emotional as a result of being sick; crying over romantic movies, and when someone else is harmed. I would give my last dollar to help someone else if they desperately needed it, knowing it might set me back a few appointments of my own.
I am incredibly appreciative of my health.
You grow very, very of being sick every single day, and you actually find yourself longing for the simple common flu or stomach bug. I would happily take four nights of Gastro over the neverending spell of nausea and digestion trouble.
I think back to the simple days and smile.
To think that I actually whinged about having a nose clogged with mucus and water eyes from sneezing… how ridiculous does that sound?! I had a very weak tolerance to illness, and that is okay. In the beginning, I wanted to die because I felt I was not strong enough to go on another day.
I hate my illness now, but I have grown more accustomed to the symptoms.
I am stronger.
I know that if I get a ‘better’ day now, it is nothing like my past days. I try and pack it with as many exciting things my body will allow me to do, but I’ll most likely never see a ‘100% better’ day ever again.
I think I could be a Receptionist.
This is not an intended joke, but I hope you laugh.
I am, though, serious.
I have called SO many offices of Specialists and Doctors, in which I have picked up numerous tips along the way and kept them in my memory bank.
I have received the most awful, rude, uncaring receptionists in person and over the phone.
If someone is calling you to book an appointment, it is most likely because they are sick.
They don’t want to be sitting in a waiting room with blaring music from your radio, or bright lights that make you squint. They certainly don’t want to be spoken to like an idiot, and if they request something it is most likely because they are struggling and NOT trying to annoy you or make your job any harder.
I have now obtained the qualities to be a pretty perfect, understanding receptionist.
‘Use time wisely’ is a statement my future self will live and breathe by.
Back in the days, I would cancel on friends as I made the choice to work extra hours or study. There is only so much time in one’s life.
Who honestly wants to spend it doing overtime, or studying excessively? I regret being spontaneous. I regret coming home super early when I had enough energy to stay out late. I regret turning down my loved ones, to spend time inside these four walls. I’ve been stuck behind these four walls for over a year! I would be more than happy to leave!
I now have all of the time in the world, literally, but I do not have the health that I used to, to get up and about. What are weekends? I have weekends all week. No, they aren’t as fun as you think.
I ‘stress less’ nowadays.
I used to be a fiery ball of lava – literally. I used to make myself worked up over the tiniest, unimportant things. I would be late by two minutes, and cry about it all day. I would be busy, busy, busy, which made me angry, angry, angry and I would stress to the point where I couldn’t sleep. If this sounds anything like you, THIS IS NOT HEALTHY, so do yourself a favour and stop it immediately. Sit back and relax.
If you are five minutes late, an hour late; apologise and move on.
Enjoy your healthy, stress-free mind whilst you have it and before the bigger things come in that you REALLY have to stress about.
I have learnt to let go of anger and petty past crap that I don’t even remember happening.
Do you know how much quality energy humans spend on being angry and feeling hate for others?
Do you know how much energy we could save if we didn’t relive awful, painful memories over and over in our head?
Humans are different. We were designed differently.
We will naturally disagree, argue, have ‘fallings out’ but please don’t let them ruin your happiness. Forgive and move on, or just move on and accept what happened.
Think Spoons, for a minute. Imagine how many Spoons you use holding onto that frustration you have had because you had an argument with your partner?
Holding onto bitterness is a very tough cycle to get out of, and whilst you are spinning, you are breaking yourself down to nothing.
Cancelling on others, or being cancelled on, does not mean that you/they love or care any less.
Since being ill, I have cancelled on people too many times to count because I am unable to judge how I will feel on the day, which means that I am unable to plan many things. Everything now must be spontaneous.
If I cancel, please don’t hold it against me, nor will I hold it against you if you cancel. I have all of the time in the world to see you, and entire days where I am sure I can spare thirty seconds to message you.
I am going to see you eventually.
I regained my passion for writing.
Prior to my blog, I didn’t write a piece for just over two years.
I know that many of you are the same.
I lost my spark, but my blog brought the feeling back and it is currently stronger than ever. It was the best decision I made, regardless of how many times I went to take it all down.
I didn’t think I was good at anything except Childcare, and that was the one thing my health would not allow me to do.
But I now think that writing is my calling, and it always has been.
I have learnt that the Government sucks.
Because most of us fall into the Uncategorised category, a lot of us aren’t eligible for benefits. You most likely cannot put ‘Chronic Fatigue’ on the Illness list, no matter how debilitating your symptoms are. I know that here in Australia, Gastroparesis does not count as being ‘sick enough’.
And that’s what most of us most likely are; ‘not sick enough’. This topic makes me angry, so here is a simple message for Government’s Worldwide:
Acknowledge that people CAN fall ill at random times, and that they CAN be undiagnosed, and STILL be ill enough that they NEED some kind of income support.
CREATE a new category for us, so we don’t have to GROVEL at your feet to try and convince you that we desperately NEED help.
I have learnt that a balance of both Western and Alternative Medicine is good for your body.
When your body is rejecting Western Medicine, you naturally turn to anything else you can find to help. Alternative Medicine was my building bridge to strengthening my body, to then be able to take the Western Medicine that I needed, and I am so thankful for it. I research everything before I take it, so I am prepared for side effects, and it’s also fun to obtain new knowledge!
It has taken me a year to finally be on a mixture of medications and supplements that my stomach can actually tolerate.
I am now a firm believer that when you are ill, it shouldn’t be a choice of one or the other. Have a balance of both, be educated in what you are taking and your body won’t hate you for it!
I have gained the utmost respect for everyone who has chosen to stick by me.
I am a bitch.
There, I said it and I apologise.
People don’t have to stick by you if you are sick. I naively thought, when I was first diagnosed, that Illness gives you a Hallpass for people to actually care about you. Wrong. If anything, it pushes them further away from you.
The people who stick around, should be treasured.
I have a war between my brain and my body. I get frustrated and annoyed with myself, which then is sometimes taken out on those who I love. I am sorry.
Thank you for not leaving me, even when I drove you absolutely crazy or looked like a walking corpse. Thank you for loving me unconditionally.
I just want you to know how much I value each of you.
I am turning the tables to my lovely followers.
We might have similar thoughts, or different, but I want to know;
what has your illness taught YOU?