I’m having a rough month.
It could go well into two or three months.
I have tried everything, everything.
I feel like I’m back to square one with the symptoms that haunted me at the beginning.
I visited my Gastroenterologist, after his month vacation, and told him that I’ve lost the five kilograms I put on, am in excruciating stomach pain, have constant nausea and am not responding to any medication.
I am tired.
I am tired of going backwards.
I am tired of telling him that I’ve gone backwards.
I am tired of explaining to people why I am “still sick”.
I am tired of being the guinea pig for a range of medications that are not making me feel any better.
I am tired of being told that I have this stomach disease, but am unable to manage it.
I am tired of my body being so fragile.
I am tired of paying Specialists money, and walking out feeling the same.
I am tired of wondering if something has been missed.
I didn’t mean to take it all out on him.
It kind of came out like projectile vomit.
But, he apologised.
I thought he’d then wipe his hands clean of my case, but he rewrote our action plan. New medication, one more test to make sure we haven’t missed anything, bloodwork and even a possible reference for a Neurological Gastroenterologist somewhere in the inner city.
The medication isn’t helping, and I still feel absolutely crappy, but I dragged myself out of there and said “thank you for helping”.
There is no manual to tell you how to handle a Chronic Invisible Illness. (Note to self – write an Invisible Illness Manual).
It’s all about trial and error, and taking chances/trusting complete strangers with your body. What is wrong? What is right?
I wish I knew.
It would have saved me many nights of excruciating pain and trips to the ER and Doctors.
You see every Specialist you are recommended to, you take every test, you try every medication and you even resort to trying out those people who “worked miracles” on your friends and family, in hope that they’ll be your knight in shining armour.
But, I keep coming up with blanks, and I’m sick of it.
When do I put my foot down and say, “I refuse to do this”?
No more appointments, no more referrals, no more medications, no more “have you tried this/seeing this person?”, and no more tests.
How can I manage something that currently cannot be managed? (And not by choice – my body is unresponsive to everything we have tried).
Do I keep pushing myself/spending money to see Specialists in hope that someone will find something different?
Will I ever find management or am I running in circles? Am I making myself more unwell by obsessing over the unknown? Over management that seems to be nonexistent?
When do I find peace?
I am surrounded by the darkness of this illness.
My life is my illness.
I cannot enjoy the company of friends or my loved ones, graduation, a career, driving, walking… without feeling these incredibly debilitating symptoms.
And, the sad truth is that nobody really cares.
Your Specialists take your money and send you away.
Your Doctors pump you with medication, painkillers, antidepressants.
The Government just want you back at work.
The ill just want to play a game of who is suffering the most.
Your friends aren’t interested in your sob story because they have bigger things to worry about than you being ill.
The bloggers like your post within two seconds of posting it, (almost never reading) but your stories are never really HEARD.
Your family have had enough, and just want you to be the person you were… “Normal” again.
Your partner is under immense pressure because they have become your fulltime carer/financial aid/transport/nurse, instead of lover.
Wouldn’t it be more simple if I just disappeared?
When is enough, really enough?