my-epilepsy

staying sane with day to day life…having epilepsy

Happy New Year

Yep, I think September was my last post. Tut tut tut. So, what has happened since then. Lots I’d say.

Firstly, I have decided to go back to uni. UNI??!! OMG!! What was I thinking? But the closer it gets to start date, the more excited I get. Masters in Social Work at CSU by distance. Two years full time. Starting March 4th. I feel pretty ready, I even bought a new computer – a MAC!! And I love it, so hopefully that’ll help me enjoy the course. I have enrolled in two prep courses also- one on how to study online and one to freshen up on writing for university (cos it’s only been like, er, 20 years, aahhh!!). So I will be starting those next week. 

I turned the big 40. In Fiji with Stephen and Lilly. And that was an awesome birthday. Very relaxing and fun. And I don’t care about my age. Big deal. But ask me again in ten years 🙂

Lilly is now in pre-school, her last year before big school – another AAAAHHHHH!! She’s growing up. Christmas was lovely up in Queensland – I loved being around mum, and I think she appreciated it. Stress free Xmas day.

Seizures? Very regular at the moment – at least one a week. I’m fully back on Frisium so I don’t know if it’s that drug, or just the seizure type, but I often seem to be overly tired again after the seizure, especially if it’s the second or third one. Lots of sleeping. But other times I am straight back into the swing of things. These are the type I hope I have when i am studying. 

Last time I went to my neuro he had no suggestions for me. I think I am a lost cause in his mind. Until a new super drug comes out I will just have to deal with things the way the are. That sounds depressing but it’s OK. As i always say, it could be so much worse, I should be happy with my current situation. 🙂

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Is this our cat?

So I had a chat with the other neurologist, but she knew nothing about me, just asked lots of questions then suggested I take the does up one level. I wasn’t very happy with that idea because the higher frequency started more than a week ago. But I thought hey I’ll just do as I’m told and if it remains the same, I’m going to take myself up another dose.

Well unfortunately I think that’s what I’ll have to do. Three days passed (Friday, Saturday and Sunday) and today what do you know!! Another seizure this morning. This time walking home from dropping Lilly off at child care. In fact once again I know what I was doing. Creepy! There is a shop called ‘Fiji Market’ on South King Street and it is well known for having a tabby cat hanging out in the front doorway. I always say hi and sometimes pat it because it reminds me of our old cat Charlie.

But today I obviously had a seizure and stood there at the front of the shop, grabbed one of Lilly’s snack bars and started feeding it to the cat. And then I tried to get him to come home with me. I then called Stephen and asked him if we still had a cat. He said no and then no doubt told me that I had a seizure. I couldn’t believe it at first. I remember being so sure it was Charlie (sniff, he was run over three years ago).

What an idiot! Again, I have no idea if there was any interaction with anybody else (who knows, the owners of the shop were probably telling me to bugger off and leave the poor cat alone). But it’s weird that I have again got such a clear idea of the thoughts in my head during or just post seizure. This time I went straight to my friend’s cafe and took a whole Frisium like I’m supposed to, and touch wood, no more seizures yet and I don’t feel as tired. Stephen has suggested I take a break from personal training also, because every day that I train I have a seizure. Also have had them on other days so hopefully it won’t be an end to training, I have been doing it for 6 or 7 years with the same trainer. But it’s just another experiment to see if that is playing a part.

*Sigh* Who knows if we will solve this one. Personally I’d just like to go back to the old dose of Frisium and have a seizure every week or two weeks. Much easier to handle…

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I’m off the team – yay!

Soooo….I guess in my last post I wasn’t really midway through being weened off the Frisium. Maybe it was week  2 out of the six weeks it takes. Anyway now I am towards the end, ie taking hardly any of the drug anymore and it’s not good. At all. I’ve been having seizures much more frequently – let’s see, since the last post (Mon 27th August) it’s been the most seizures in that period of time that I’ve had in a long time. Put it this way, I had the one that afternoon, one the next day, three days off, then one on Saturday, Sunday, then another three days off then two yesterday. Am I going to have another one today, or was yesterday my two seizures and today my first of three days off? Or will my body adjust and it’ll be another two week break? Aaaaahhhhh!!!!!!! Very frustrating!

Plus I am back to taking a longer time to recover from the seizures. Maybe worse when two in a row, for example yesterday afternoon when I got Lilly home I lay down on the couch and pretty much slept until bedtime when I then went and well, slept! I guess it’s because Frisium used to be the drug I’d take only after I had a seizure, to help recover. And of course I keep forgetting to do that don’t I. Because my neuro said to keep doing it. But I actually don’t think I carry one around with me.  Might stop me from having two in a row and from thinking bizarre things either during or after the seizure like I did yesterday which I don’t normally remember, but for once I do and it’s kind of funny so I thought I’d share it. Because remember, there’s no point feeling sorry for yourself all the time; won’t help things…

So yesterday afternoon I was walking down Missenden Rd on the way to pick up Lilly and I can remember thinking that I was part of a football (or some sport) team and we were all walking down behind the coach. And I wanted to run away because I didn’t want to be on the team anymore. I didn’t like the coach or something, not really sure why. There was one other member in front of me (I even remember that it was an elderly man possibly with a cane) and he overtook me, so this was my chance. I ducked down a side street and oh the joy! I was hidden! I’m off the team!

I have absolutely no idea if I interacted with anyone about this, in this character – please please no is all I can think. But I amazed that I remember this thought process. And I didn’t remember it until later. Long story as to how it all came back but anyway, I liken it to remembering a dream – maybe something triggered it.

So there you go. Now I am just waiting to hear from a neurologist about whether I should continue going off Frisium or not. Unfortunately it’s not my neuro, he’s O/S for about 6 weeks and it’s really something that I feel should be discussed now.  To get back on that Frisium or not?

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Changes…

Woops it has been nearly a month since my last post. That’s terrible! I’d like to say it’s because I haven’t had a seizure for a month but noooo, that’s not the case.

So let’s see, I was going to see my neuro because I was having a seizure every 5 days so I felt the new drugs just working. So what happens? It was two weeks until my appointment and did I have another seizure in that time? NO! Which is great of course but kind of negated the whole point of my going to see him. Maybe the drugs were starting to work? Part of me thought briefly, maybe I’ll just lie and tell him they are still happening frequently, but I just can’t do that. Bad karma! So I told him the whole situation and he decides that next time I have a seizure he will ween me off another of the three drugs that I take. Frisium. I am quite happy about that because that is the drug that makes me sooo tired. He looked over my history and decided it has never really provided many benefits (always nice to hear that you have wasted $100s of dollars on medication).

So that “next seizure” happened to be that afternoon! Once again another case of me jumping into a taxi for no apparent reason when on my way somewhere (I think this has happened about three times in the last few months). So I’m now midway through coming off my Frisium. Good news, it hasn’t had any bad effects. I had a seizure this morning, exactly two weeks since last one! Quite pleased if this pattern remains. One a fortnight is much better than two a week.

And this one was a nice normal one at home with Stephen, no taxis or sandpits or any other humans involved. Did I tell you about the child care sandpit one? That was one of the every five-day ones, and I only found out the details a week or two later when I met up with the man, another parent, involved again. It all sounds so dodgy, and sometimes it feels dodgy, like it was one of those times (when we were younger of course, never anymore) when we had one of those nights out drinking and we got so drunk that we know something or other happened – just can’t quite remember. Or, another analogy is when you wake up and you had a dream that you know was interesting in some way or another but you just can’t remember it!

But back to the seizure – when I saw the dad again at childcare  I asked him about the seizure and yes, in my opinion I had totally embarrassed myself. He said he looked over and there I was lying in the sandpit out in the playground. He didn’t think much of it at first (maybe playing a game with Lilly or something), but then realising I wasn’t and I was just staring into space, thought yes perhaps I was having a seizure (luckily his wife knew I had epilepsy so must have told him) so came over and asked me what I was doing. Apparently I said “needed to go down” (take that anyway you like – I nearly died when he told me that). Upon further investigation, I explained that I needed to get down to the level below to pick up something. And the poor guy tried very hard to explain that there were no lower levels, no escalators, lifts, nothing. This was the ground floor, the bottom floor. He continued, he said, until I finally understood and therefore I guess I must have come out of the seizure and wondered what on earth I was doing sprawled across the sandpit. But I didn’t remember any of this so why I was very keen to find the dad. He was very nice about it and told me there was nothing to be embarrassed about (but let’s swap places and see how he feels if that had been him having the seizure!!)

So there you go. Pretty funny in the end.  OK I’m tired, going to have a lie down. Will try to start writing more regularly again x

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It’s just not working

I’ve known that for quite some time now but after only five days between my last two seizures, I decided to call my neuro and finally say- “I want out”. There is just no point to these drugs. So I have an appointment in a couple of weeks to arrange a ween off this drug and a discussion of whether to replace it with anything.

So I’m happy about that. Also, happy I have got some work coming up. Some contract work. A nice way to get started back into the world of employment!

I’m sitting here watching the Australian Female Gymnasts. Bloody hell, they are amazing. I know it’s not a hugely highly regarded Olympic sport (or is it, I don’t really know) but they are so talented I can’t get over it.

That’s all really. Just crossing all my fingers that whatever decision is made next will work 🙂

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Been a while

I haven’t posted for more than a couple of weeks now. So what’s been happening? Quite a bit for me I guess. Actually I did write a post last week but I lost it when I tried to publish it – not sure about this wordpress business. And I got the shits and couldn’t be bothered to re-write it all over again.

So what’s my current situation. I’m sitting here on the couch at 9:30am Sunday morning with Lilly fast asleep next to me and Stephen reading one of his million work books on the other side of Lilly. No wait, he’s playing a game on his iPhone. Poor old Lill, she’s sick. There has been no other Sunday this time I can think of since she was a tiny baby that she’s been asleep. She’s been up since 5:30 throwing up; threw up last night too. I guess some sort of bug. I really don’t want her to pass it on!!!! Poor thing, but, it’s just so lovely and quiet when they’re asleep.

Mum was here, went home on Monday, it was sad to see her go, but Ali and I will be back up there in a few weeks so not long ’til I see her again. We had a lovely few days together. She witnessed a seizure, a very small one, but what she said was nice was that Lilly stayed with me the whole time, stroking my cheek and saying, ‘are you ok mummy?’. I love that, makes me so happy and proud of her. I had gone ten days between seizures so that was impressive.

Unfortunately then there was only six days ’til the next one, a couple of days ago. This is a kind of funny one that I can laugh at. Lilly had gone to bed, which I’m glad of, cos she would just think her mother was a weirdo. We were watching TV and I evidently started singing and dancing while still sitting (Stephen does a great impression, we both wish he’d recorded it). Then, as he’d realised I was having a seizure, Stephen paused the show we were watching. This apparently confused me greatly and I stood up and tried to figure out how to get the lady on the show moving again. To quote Stephen I was waving my hands across the TV saying “how do I make her move?”. Quite funny to watch I imagine. Once again, wish I’d seen it!

So there’s the epilepsy situation. No different. New topic – I’ve got some work coming up, just some sub-contracting work doing research, so that’s made me happy. Not sure when that starts but soon. That makes me happy. Still researching the occupations of the world to come to a full decision about what I want as my new career.

Oooh Lilly has sat up. Better go. I won’t leave it so long next time.

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Flight of the Conchords

Last night we went to see these two brilliant hilarious musicians and I loved 99% of the night. But there’s one song they do that I just can’t enjoy. I kept trying to stop being so sensitive, it’s just a joke, but their song ‘Epileptic Dogs’ I can’t find funny. I feel so dumb. I’m sure if it was a joke about some other disorder I would laugh but I just can’t see the humour! Here are the words:

Think about the epileptic dogs / Not all the puppies are born so lucky / Somewhere there’s a golden retriever, who’s having a seizure / Somewhere there’s a pup seizin’ up / And theres a labrador who’s shakin on the floor

Think about the epileptic dogs / Send lots of money, to stop these dogs from actin’ funny / Send a check in the letter to make a setter feel better / Come on and make a donation and save a shaky dalmatian

This is the remix / Epilep lep lep, Epileptic / Epilep lep lep lep Epileptic / Ep Ep Epilep lep lep, Epileptic / Ep Ep Epilep lep lep, Epileptic / Ep Ep Epileptic

I’m sure I’m overreacting right? What does everyone think?

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To be expected…

Exactly one week later, another seizure. With Lilly alone apparently. I was getting her changed into her PJ’s, and Stephen suddenly heard her saying “mummy – answer me!” several times. But what Stephen is happy about is that she stayed in there with me, which is what he is teaching her to do. Stay with mummy when she is having a seizure.

I can’t say one only yet, as it’s probably only 12 hours since the last one and more could happen today but I am trying to feel positive! Why complain when I have my lovely learning daughter and supportive husband right??

Cooking

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PS

Happy Birthday to my wonderful husband Stephen. Enjoy your Kindle!!!!!! Love you xxx

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Annoying!!

This post is called ‘annoying!!’ because this is the second time I am writing it. I ‘published’ it but it didn’t work so this time I will save as a draft often before I publish it and see if it works this time 😦

So it’s taken about a week to finally describe the seizure I had. It got me down for quite a while but now I think  I can laugh it off. I was on my way to a, well not a job interview but a “chat” with someone about my current status and what sort of work I was looking for. I didn’t exactly know where his office was so I decided to head into the city early. Found it easy peasy and then decided to go for a walk up the street to see what was around. Then next thing I know I was in a taxi on Mitchell Road Alexandria heading back in the direction of home. So I guess I’d had a seizure and in that time had decided I had no idea where I was and got into a cab and said take me to St Peters.

So I ask the taxi driver to pull over and check my phone. It’s five minutes before the meeting was about the begin aaaahhhhhhhh, and then I checked my recent calls and messages. I had called him and who knows what I had said / sang / yelled at him during my seizure so I took a deep breath and called him again. He said yes he saw that I had called (cringe) but hadn’t checked the message (phew). So my not quite functioning properly brain said I’d be there asap and would explain everything.

Lucky taxi driver, I asked him could he turn around and take me back to a particular street in the city, I recall him saying “but I just picked you up from there”. I am a bit vague but I have a feeling we had a long conversation about epilepsy.

As was the first ten minutes of the meeting back in the city spent discussing my epilepsy which i really didn’t want to do, but oh well. He was pretty cool about it. I had a real job interview yesterday, I was terrified I was going to have one, but yay I didn’t. Today is a week. Let’s see if we can go over a week.

Cross all those fingers and toes for me!

 

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