When It’s Not Cancer

(Images courtesy of @thedailymigraine, a personal comfort. https://www.facebook.com/thedailymigraine/?fref=ts)

I don’t know what I’m supposed to say here. Apparently I’m difficult to talk to about my disease; hard to ask questions. Sometimes I feel as though I’ve exhausted all my words. The English language fails me. It hurts. It’s murky. I am swimming in hell. And then I’m not. Because you’re right, it’s not cancer. This will not kill me, not unless I kill myself.

Sometimes I wish it were cancer—or at least something a little more cut and dry like that; something more urgent that could be treated. My neurological condition that is currently being played about with by neurologists who throw anti-epileptic drugs, beta blockers, anti-depressants, potentially botox injections—anything that isn’t a drug specific to my disease, leaves me in the position of a guinea pig. My GP refuses to believe my disease even exists. I can’t suffer from constant vertigo. I can’t have constant migraines. I cannot be in constant pain.

The last drugs have cost me my hair, my appetite, my weight, my sex drive, my vocabulary, my memory, my ability to finish a sentence, and now my sanity. I have had to come off them a little sooner than planned because they were causing me auditory hallucinations. I awoke last week to a voice in my head that was not my own. It was really mean. It yelled a lot.

Now I must go through severe drug withdrawal on top of chronic daily migraine with nothing for either, but more drugs which in excess could cause more addiction and later, a motor disorder. It consumes my every thought, because it consumes me. I have become this shivering, nauseous, sneezing wimp who can’t put her feet on the floor because the floor just isn’t there anymore. My disease has somehow become me in a way I never thought that it would; I have become this gasping ball of fear clinging to whatever future I could possibly have. I may never have my own children. I will have to declare this disease to every employer I apply to and will most likely suffer some discrimination for it. I am triggered by bright lights, flashing lights, loud noises, strong smells, amongst other things. Although I refuse to take sick days, there are times, like now, when I’m your regular neighborly recovering drug addict, that I’m having to take those sick days and I’m having to fight and admit to the stigma of being reliant upon a prescription drug that was supposed to help me but potentially made me worse.

I can’t decide if my self-awareness here is a good thing or a bad thing. Does it still count as psychosis if you understand that it’s happening to you? Is it still paranoia if you can point it out to yourself and say, “No, that’s the drugs talking?”

Then there’s the fear that if I take nothing, if I go cold turkey, I won’t be able to stand up. I spent two months last year on bed rest with the world spinning whilst I lay collapsed on the bathroom floor because even my mattress was too high for my vertigo to withstand. So perhaps I will be the recovering, reliant drug addict for the rest of my life. Because I want to stand up and I want to talk and I want to leave the house and go to work and socialise.

I miss going to a bar and having a drink. I miss gin. I miss being able to grow my hair long and it not falling out in clumps. I miss waking up in a morning and feeling well, or feeling confident enough to make long-term plans, but I’m trying to aim for attainable goals here. I worry that this makes me boring and miserable.  I worry that these are silly problems and that I’m just being pathetic. I worry about the burden I must be on my boyfriend, on my parents, on my friends. I worry about the plans I have to change/cancel, about the flexibility I require, about the standards of my own that I can’t always now live up to.

I think about the fact that I’m now registered as a Disabled Student and how I have to tick the “disability” box on any job applications, how scary that seems, how vulnerable and what/whose agendas I’m now tapping into. I wonder if someone, some day, will take away my driving license. I wonder where these drugs that they’re testing on me really will leave me, as they send my moods oscillating from one hemisphere to the next leaving me giddy with rage or glee; how long have I been out of my mind?

And then I think back to how I’m difficult to talk to about my disease, how the English language fails me, and how my drugs have taken my vocabulary and my ability to finish a sentence, not least my confidence in how it would be received. And I just wonder, how the hell would you explain how fucked up it all is in five minutes? And no, most days, I am grateful that it’s not cancer. I get to be the special kid, with the disease no one knows how to cure. It won’t kill me, but sometimes I will wish that it did. Other days, I just get on with it. As I will do again when this bloody withdrawal has passed. I will return to my semi-sarcastic, slightly-more happy-go-lucky take on this migrainous journey around the sun that I am on. Hopefully with less paranoia.

Moral of this story: Don’t do drugs kids. Even the ones the really smart doctors prescribe can bite you in the ass.



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