Stubborn


StubbornOnce upon a time, many years ago, my grandmother declared that I was so stubborn that I would even defy death until I was good and ready to turn up my toes.

She was right, actually; there have been a few medical emergencies in which I refused to die – and that is why you’re sitting here reading my general meanderings. Possibly it’s drivel and possibly it’s not; either way, I am still here to write it.

I am very much like that tiny little fiery Welsh lady who called me stubborn all those years ago, and who declared it to be a good thing. Well, stubborness kept her going for almost 93 years, so she was obviously right.

My medication is not working, and yet I’ve been struggling to carry on as normal. I flat-out refuse to let it control me.

I get sick and I suffer from dreadful vertigo. I’m constantly tired, dizzy, disoriented, even more clumsy and uncoordinated than the clumsiest most uncoordinated thing ever, always falling over due to dizziness and have absolutely no libido.

Where are my balance and libido? I’m only 39 for crying out loud! I ought to be getting out there and having fun – not sequestering myself away in case of accident! I feel that my husband is missing out on an important part of our marriage that we both previously enjoyed until I was told to swallow this awful drug.

I asked about Vimpat in a forum, and recieved a response from a nice lady informing me that she suffered the same issues while she was taking it.

I won’t let this horrible drug beat me; it has to go. When tomorrow comes I shall be calling the number on my most recent hospital letter, and I shall refuse to get off the phone until somebody at least puts me through to my neurologist’s secretary.

The only problem is that my epilepsy nurse (who retired due to illness) would always call me back if I had to leave a message. He would book me in as soon as he could if he thought I needed to see him sooner rather than later. This neurologist does no such thing – and, even if he did, his Greek accent is so heavy that my partially deaf self relies on D for interpretation (I always feel dreadful when I have to ask him to repeat himself over and over – it’s not his fault that I can’t understand him).

But Doctor Z is busy – especially since he now has Nurse L’s clients on his hands until a new epilepsy nurse can be found. I cannot possibly expect him to fit me in due to my issues – somebody else might need to see him much more urgently than I do.

Epilepsy ActionAnd so I remain stubborn. I may never be free of seizures and I know that many of the medications I’ve tried have damaged my liver permanently. Am I sorry?

Actually, I’m really not. I’m not sorry because neurologists have tried to help me and – even though they’ve failed so far – I am alive to tell the tale. We will get the right medical mix eventually; of that I’m certain. It’s nobody’s fault that I experience such strong side effects and so we just have to keep plugging on until we find the answer.

In the meantime, I stick two fingers up at my epilepsy and the side effects of my medication. I accept every fall, every bruise, every mood swing and every damaged garment.

Because that is what my grandmother taught me to do. I am not just going to lay down and die – not until The Doctor comes to collect me in his TARDIS.

What was that saying in Galaxy Quest? “Never give up; never surrender”.

I am never going to take notice of the minor twitches that might go on for hours prior to a proper seizure – I have too much to do, such as gardening, pickling, sewing and loving my husband.

Dear epilepsy, you can bite me all you want – but I am never going to allow you to be the boss of me. You can try all you want to, but you’re not taking me.

About Missus Tribble

Media volunteer for Epilepsy Action (UK) and advocate for both epilepsy and autism awareness. Would like a Tardis when I grow up.
This entry was posted in "Mutants", 2013, Acceptance, Adapting, Always Look On The Bright Side Of Life, Attitudes, Born This Way, Disability, Epilepsy, Epilepsy Action, Epilepsy Awareness, Frank La Rocca, Health, Hope, Marriage, National Epilepsy Week, Neurological, Refusing To Be Beaten, Seizures, Viva La Rocca. Bookmark the permalink.

12 Responses to Stubborn

  1. Good for you! I’m glad you’re taking initiative and being more stubborn than the system. Don’t stop until someone listens.

  2. The Heretic says:

    There is also the Saxon song “Never Surrender”.

    Not sure if this will make you feel better, but while reading your post I couldn’t help thinking about a part from one of Eddie Izzard’s stand-up recordings where he talks about girls fighting on to live because they have the secret of hopscotch.

  3. WordsFallFromMyEyes says:

    Absolutely don’t stop until someone listens. I’m really happy for your determination. GO and GO and GO.

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