Literally Losing My Brain

April 3rd, 2011 by Jules Leave a reply »

I’m going to preface this blog by letting you all know that I’m scared and worried right now. Today, I was slapped, yet again, with some Lupus reality. And now I fear I am going truly senile instead of just the normal lupus brain fog and cognitive issues which were compounded when I had my stroke.

I’m on antibiotics right now. I’m extremely careful when reading medication labels. Misreading medication labels is a huge cause of a word that is escaping me at the moment. Even medications I’ve been taking for nearly a decade now, I read the label each and every time I take them. I suppose it is one of my OCD things.

Today, I was cursing the antibiotics because the cure is worse than the disease at this point. I can’t eat because they make me nauseated yet you are suppose to take them with food. There are… let’s just say… bowel issues as well. The antibiotics they put me on are extremely powerful. So I picked up my bottle of antibiotics while attempting to contemplate the current feeling icky thing. And that is when, for the first time, my brain actually registered what the label said.

“Hello senility! Nice to see that you interfered to such a degree that I forgot how to read and comprehend written words for nearly four days. You caused me to seriously overdose. “

What my brain was seeing: take 2 tablets twice a day until finished.

What the label actually says: take 2 tablets once a day until finished.

No wonder I am feeling extra crumby. I’ve been taking 2 grams of this killer antibiotic instead of one. And now here are the ramifications of losing the ability to comprehend type: 1) I’ve completely wiped out any immune system that the once a week chemo hasn’t already wiped out; 2) I’ll be short 3 days of treatment. That is not good as failure to finish a course of antibiotics can the original infections to come back with even greater ferocity. 3) Increased risk of new infections on top of the 4 my body is currently trying to combat.

Now, that is scary enough in itself. But the thing that has me the most afraid is that I was senile and the results are dangerous. If you’ve listened to the podcast I did last year re: lupus, you’ll know that my brain and intelligence is of the most importance to me. It is my best asset. I use to be beyond brilliant. I’ve moments of being dull, but this is a new low. Going senile and losing my ability to be intelligent is my biggest fear. I need my brain. I need to figure stuff out. I need my almost eidetic memory. I need to think. I need to rationalise.

And I’m losing it.  Death does not scare me. Perhaps losing my ability to walk, yet again, does not scare me. Organ failure does not scare me. Well they do, but not the level of being petrified and terrified. For me, if I lose my brain, I do not want to be living any more. I do not want to be one of these people who no longer recognise their loved ones and needs 24 hour care. There is no point in being alive any more as you’ve lost your ability to truly experience. And I wish Canada had laws like Holland does that supports some one if they want to be euthanised. I already have it in my living will that no extraordinary measures are to be taken to safe my life. I do not want to be hooked up to machines. I want to die with dignity.

Well this is depressing isn’t it. I think it is safe to say that I am once again in a state of grieving. That is one of the sucky things about lupus, you are always in some state of grief and it doesn’t get resolved, unlike with the death of a loved one. I miss my brilliance.

And I think that is all I care about this right now. Only sharing it because the lovely Denise Hudson (@RangerDenni), who has been one of my greatest supports during this last fight, said I should.



  1. Denise Huson says:

    I am going to email you now. :)

  2. Hi Jules

    After reading this I wish I could help in some way other than just by offering you my thoughts and wishes but I don’t suppose that’s possible.

    So you’re stuck with those instead.

    I totally agree with your Living Will conditions – I have the same.

    Thinx of you as usual


    • Jules says:

      Thanks, Ian. The emotional support is doing loads. It is nice to know that people are behind me in yet another fight with Lupus. Feeling alone when you are surrounded by people sucks. Regardless of the cow dung, feeling that I’m not alone helps me to find my will-power and inner strength. Sometimes, I forget it is there. It is nice that others will remind me of it.