I went through my last lot of tests today.
The Royal Eye and Ear Hospital for Inner Ear Testing – checking for Balance Disorders.
I know that other sufferers tend to say, “I went in with no expectations”.
You went in with a tiny fragment of hope.
It may have been as small as a single piece of glitter, but it was still something.
You don’t have to pretend to be strong to me, or anyone else.
Cry about it.
Scream about the unfairness.
Punch and kick until your heart is content.
Just don’t lie and tell me that you are completely content with coming out with no answers.
If you lose all hope, you lose yourself entirely.
I had hope that today’s tests would close the curtain on my living nightmare.
I, as usual, came out with no answers.
I cannot tell you how disappointed I felt.
My heart sunk, my soul sunk – worse than any of the times before.
The final tests after months of exhaustion.
The Lady was lovely, though. She sat me down and said, “there is something called Functional Disorders. Things we as Doctors cannot see. You may be apart of the rarity of people who suffer from them. Some Doctors don’t believe what cannot be seen. But don’t worry,” she told me. “I believe you“.
In my six months of appointments, she was the first person to say those words.
I didn’t cry until I got home.
It hit me all at once.
I was holding onto the sink, trying to wash the dishes one at a time and incredibly slowly. As I scrubbed each utensil, I felt my head spinning. My weight leant on the sink entirely. My legs felt like jelly and my eyes began to roll. I had to keep telling myself, “not many to go, not many to go”.
My body has deteriorated, and I have no control over it, nor know why it has recently given up on me.
I cannot describe the dizziness in any other way than, my entire world spins when I am standing and my legs literally turn to jelly. I feel like I am falling. I am constantly nauseous too, and my stomach is refusing to digest properly. I am a mess.
Every test result has been negative.
Every Specialist I have seen sees nothing, therefore there isn’t a problem and the Nothing “cannot be managed”.
I can’t even stand on my own anymore.
Just fucking toughen up! I screamed at my inner self. Just show me where the problem is!
The tears welled and the small lump in my throat turned into a melon.
The life I had pictured for myself and the one I am currently living are very different.
Disability Pension fast approaching at twenty-two, no job, no career prospect, no savings, no partner, no travel experience, minimal friends, stuck inside these four walls, missing out on living, stuck in concrete with no answers.
The nightmare that never ends, and I can’t help but ask myself, why me?
If not me, it would have been somebody else.
I wouldn’t want anyone to suffer with this unknown disease inside of their body. I wouldn’t want them to watch all they had worked hard for, crumble beneath their fingertips.
I am exhausted and emotional.
I don’t want to hear that I am strong.
I find it insulting.
I’ve noticed that everyone likes strong people because they don’t ask for anything.
That doesn’t mean that they don’t need anything.
I need to be able to manage this.
I don’t know the point of this post tonight. I apologise for any grammatical errors as I am writing amidst tears. I am terrified of what happens tomorrow onwards. I am terrified.
I don’t know where to go from here.
The light at the end of the tunnel is now dim.
I just want you to know that if you are suffering from something similar, something invisible…
I believe you.