Today was Eid, my friend came over and we had some fun browsing youtube then went out for a walk, had some bubbletea and did some shopping, on my way home around 9pm my phone vibrated, reminding me that it was time for me to take my medication – Keppra. I was just about to enter the corner shop to buy some milk then it hit me like an 18-wheeler, I hadn’t taken my morning dose. *mind rewind* We had left the house to go to Eid prayer just before 7, I had forgotten to take my tablet with me, we had gotten home and I had been exhausted, I’m pretty sure I hadn’t taken the morning dose. I checked my phone app, the little square next to the medicine name was red – surely that meant I was overdue. I was over 24hrs of no keppra, the last time I did that I had a seizure, I raced from the corner store to my house, up the stairs and to the kitchen table, grabbed my medicine bag and started getting my medication, telling my family I hadn’t taken my morning dose, after a slight panic they told me “yes you did! You woke up, came down, took your med and complained about how you could have taken it upstairs, hovered the living room and then went back to bed!” My heart was still racing, I just quickly swallowed my pills, ticked my phone app while my mum droned on about how I should always take my medicine in front of someone and settled down.

Then I remembered, I told myself I wanted to start the new medication after Ramadan was over, the change would take a long while and I didn’t want to go through another winter having not done anything about my life situation, I didn’t want my life to turn to turmoil again, I managed to land a job I really liked and I was happy, I want this to go on.

My parents had told me to hold back on the new medication, they weren’t keen on it, understandably as the last time I tried changing medication I nearly died (Steven Johnson Syndrome) and dropped out of uni and was basically offline for a good few months. Still I had slowly but surely tried to convince them to let me, the neurologist had given the green light but when I held the new medicines in my hands I got slightly scared, and my mum really wasn’t keen. She had looked after me through the illness and I couldn’t do this to her. So we made a deal, I would gain some weight, and become more responsible, and then we’ll try it. Today was a good day, I haven’t reached the target weight (months later) but I’m going to get there, just got to believe it right? So I was due to start this new medication in February or so, it’s now July and today I took my first dose.

The dose is very tiny, 25mg, and I’m still on my keppra full dose, nothing should go wrong, I just have to keep an eye out (or in) on my body’s reaction and see if its happy or not with the new med, if its not happy, then we’ve got to stop, hopefully before we go into a full body shut down and liver failure.

As I sat there, reading the list of side effects, the list of “contact your doctor immediately if”’s, I feel scared, I know I have to take it a day at a time, but the way the last med change went… My life could go up in smoke. I don’t want it to. So why am I taking the medication you wonder? Because im currently living a “meh-good” life. Keppra controls my seizures but gives me memory loss problems (maybe Zonisamide wont have that affect on me?), I have to take it twice (Z only in the evening), gets me really low in the winter (hopefully that’ll go too). It’s understandable to get low in the winter, I was prone to it even before I started keppra, but it was manageable, I could function, but two winters ago I couldn’t, I dipped and instead of pulling up at the turn of the new year, I crashed into the terrain, a smoky, fiery lifeplane crash, university work was a struggle and then I got SJS and had to drop out.

I could take precautions to deal with the winter months better, that’s what I kinda tried to do last winter, but still, it was…hardly passable, I hadn’t taken off yet so there wasn’t an amazing crash but I didn’t soar either. Now I am “soaring” and I don’t want to sit back and wait for the crash. Help yourself and God will help you right? (That might be a French saying that I’ve roughly translated to English..but I’m sure you can understand the overall meaning yes? And yes, I’m a theist) I’m not supposed to not do anything and “have faith” things will go differently. That’ll be kinda stupid. Another (Arabic this time) saying is “tie your camel and put your trust in God” aka, don’t leave your camel untied and trust that it’ll still be there when you come back, don’t be an idiot.

So what’s my point again…

Why we want to stop keppra:

  • Memory loss
  • Depression
  • Twice a day
  • Other urgh side effects

Why we don’t want to change:

  • Change is scary
  • Things could go as bad as the last time we tried changing
  • (Undesirable side effects might remain/might be cause by brain damage and not the medicine at all)

Why we should change:

  • Theres’s more than 20 medicines for epilepsy, why should I limit myself to “passable” and live a limited life?
  • Am I coward? no I am not.
  • Why not?

Let me tell you something, As I read the list of side effects of this new medication, I feel terrified and throw the list aside, that list is nonsensical, one side effect is “seizures” THE MEDICINE IS SUPPOSED TO STOP SEIZURES! Another is increased heartbeat… my heart is beating fast! But that’s not a side effect, that’s a mix of fear and apprehension (the above should give you an idea of why), the next few weeks are going to be like this, picking apart what is just me and what could be my body telling it doesn’t like this new drug…


Being unwell – Part 2

I’m continuing my story… In August, me and my family went on a one month holiday back to our home country. I was ok, my skin wasn’t constantly itching. I wasn’t using liquid paraffin anymore but emollients that were a bit more…life friendly since about July. The flight was bearable, we had wing seats though but there are some nice pictures if one can look past the huge metal wings… This trip was booked months ago, in March or so and I hadn’t been unwell – I was looking forward to working hard, making it through my 3 months nursing placement and then relaxing for a whole month on a tropical island. Read more

The past year – being unwell (part 1)

From April 2015 till now (December 2015) a lot has happened. I’d like to say what I’m writing isn’t complaining. But I’m not sure. I don’t want to make anybody sad while reading this. I just want to give an insight. These illnesses were strange. I’d rather you be inspired or fascinated by the following few posts, I’m well now, and this is life, this is what happens. I can only learn from it all, grow from it, gain from it. I will hopefully internalize these experiences and learn many things, grow and strengthen my character, gain empathy, understanding, a feeling of peace with the world; not anger at things I can’t help. I will look beyond what happened, at what I CAN LEARN here. Otherwise, this would just be a wasted experience. Read more