So as you know I have epilepsy (frontal and temporal lobe) it is the bane of my bloody life and I HATE it with a passion at the moment rrrrrrrrrrraaaaaaaarrrrrrgggggghhhhhhh to epilepsy.
I was put on one medication for it, had the dose increased then had a side effect to it. I basically woke up one morning feeling like I had gone 10 rounds with Frank Bruno (old ex English boxer for you non poms) had done a really full on work out and all my muscles where stiff and aching and I was walking around like a demented cowboy or should I say cowgirl.
I am being weaned off of it, and go and see the neurologist on friday to change to a new drug.
Anyway, last night I had a pretty freaky nights sleep. I would be holding something in my dream (like a spoon) and I could actually physically feel it. I would then sit bolt upright and try and put it in my mouth and be all confused as to why the spoon wasn't there and where it had gone. It happened lots throughout the night with various objects.
So I woke up this morning, curious as to whether this was some freaky form of a fit, or whether I may be hallucinating still. I googled both FLE and TLE and was reading happily about all the things that occur with them couldn't find anything that fit my freaky dream though.
Anyway the point of all of this is I got to the list of drugs that treat both forms of epilepsy and saw the drug I am being changed to, so I did what any normal person would do, I clicked on it.
I read away and was really excited it really does sound like the drug that will fix not only my epilepsy but also help a hell of a lot with my psychiatric condition.
THEN...then came the side effects...all the usual kinds at first, nothing too concerning, nothing I haven't experienced before. All very reassuring.
AND THEN and then came the pictures...the scary, scary pictures and the words "BLACK BOX LABEL WARNINGS"
This stuff CAN cause 3 freaky different kinds of flesh removing conditions. It is very, very, very, very extremely rare but it can happen.
I worry. I worry about these things because I am the girl that got a pulmonary embolism after having abdominal surgery (appendix removal)
My son got stuck when I got induced and was born by emergency c-section, blue and not breathing.
I had a monumental breakdown at the beginning of this year, and then found out I also have epilepsy.
Whilst I was in the psychiatric hospital I had a full on head to toe allergic reaction to something that we never really found out what the cause was.
I seem to be the person that gets the rare one in a squillion risk thing happen to me. However that is very "Glass is half empty" thinking.
A wise and wonderful woman taught me recently that firstly "the glass is half full" always. and have no expectations. I am trying to follow this wisdom and on the whole it is working well for me...but with this, it just doesn't quite work.
In summary I am a paranoid freak who is going to spend the next week worrying pointlessly about something that does not become an issue until friday next week and is such a rare thing I shouldn't blow it up into this huge big thing.
I am catastophising, I am fortune telling, I am black and white thinking, I am doing every basic thinking error in the psychological books and I don't know how to stop it. Tonight I am battling my daemons by the power of knitting. That'll get em.
Thank you for reading xx
Friday 5 August 2011
Sunday 31 July 2011
Epilepsy and its impact on my so called life.
It has been just under a month since I have blogged. I have been in a very scary, very dark place thoughts too unsafe to share in a blog, words to dangerous to even write down on paper.
However, look at me for the most part of that month and you would not realise that ticking away in my little brain hiding behind the well placed, well used well rehearsed mask were some pretty dark self-destruct ideations and notions. But those are not to share, those are to stay locked away in the nice little containment area I created for them.
I am sitting here with the flu, hacking my guts up and struggling to breathe. I know I need to go to a doctors and get some antibiotics, but I don't want to go to the new one here and have to go through my now very complicated past and my weird and freaky allergic reaction which may or may not have been due to antibiotics. So I will have to try and coordinate a visit to my normal GP between their availability and Jamies.
I have also had a freaky side effect to the anti epileptics. I was slightly aware of it when I was on the smaller dose, but blamed it on Jamie and his disco legs. My muscles shaking very gently, but shaking all the same. When I went up to the next dose, I could feel it all the time and could barely walk, it felt like I had just gone and done a hard-core workout and all my muscles hurt (walkin' like a cowboy!). so I am being withdrawn from the current stuff, and will be restarted on some new stuff on the 12th August. My 3 months of no driving does not even BEGIN until the epilepsy is under control :o( so I have to hope my body handles the next drug better than the first.
I think I have just got to the point where I am so tired of it all. I had just got to a point where I was going to be picking up the kids from kindy early and spending more time with them and that has been taken away from me.
I was feeling ready to be more social and get out and about with my old friends and I feel like that has gone too.
I feel like I am under house arrest and I feel like a child and I can not move away from those feelings. I am trapped in a really messy house and I CBF'd to do anything about it because none else gives a damn, and I am starting to lose my art mojo...if that goes....I will be broken.
Robbie has been done before but it is how I is feelin today so here we go again!!
So unimpressed, but so in awe
Such a saint, but such a whore
So self-aware, so full of shit
So indecisive, so adamant
I'm contemplating, thinkin' about thinkin'
It's overrated, just get another drink and
Watch me come undone
However, look at me for the most part of that month and you would not realise that ticking away in my little brain hiding behind the well placed, well used well rehearsed mask were some pretty dark self-destruct ideations and notions. But those are not to share, those are to stay locked away in the nice little containment area I created for them.
I am sitting here with the flu, hacking my guts up and struggling to breathe. I know I need to go to a doctors and get some antibiotics, but I don't want to go to the new one here and have to go through my now very complicated past and my weird and freaky allergic reaction which may or may not have been due to antibiotics. So I will have to try and coordinate a visit to my normal GP between their availability and Jamies.
I have also had a freaky side effect to the anti epileptics. I was slightly aware of it when I was on the smaller dose, but blamed it on Jamie and his disco legs. My muscles shaking very gently, but shaking all the same. When I went up to the next dose, I could feel it all the time and could barely walk, it felt like I had just gone and done a hard-core workout and all my muscles hurt (walkin' like a cowboy!). so I am being withdrawn from the current stuff, and will be restarted on some new stuff on the 12th August. My 3 months of no driving does not even BEGIN until the epilepsy is under control :o( so I have to hope my body handles the next drug better than the first.
I think I have just got to the point where I am so tired of it all. I had just got to a point where I was going to be picking up the kids from kindy early and spending more time with them and that has been taken away from me.
I was feeling ready to be more social and get out and about with my old friends and I feel like that has gone too.
I feel like I am under house arrest and I feel like a child and I can not move away from those feelings. I am trapped in a really messy house and I CBF'd to do anything about it because none else gives a damn, and I am starting to lose my art mojo...if that goes....I will be broken.
Robbie has been done before but it is how I is feelin today so here we go again!!
So unimpressed, but so in awe
Such a saint, but such a whore
So self-aware, so full of shit
So indecisive, so adamant
I'm contemplating, thinkin' about thinkin'
It's overrated, just get another drink and
Watch me come undone
Tuesday 5 July 2011
Pity party.
Welcome to my Pity Party, Everybody is welcome. There are chips and dips, chocololate and lemonade, jelly cups and party pies.
I also have streamers, party hats and a piniata.
Prize goes to the person who comes up with the best self-depreciating statement.
You will obviously all go home with party packs.
That is all.
(ps. L...could not link my video no matter how hard i tried)
I also have streamers, party hats and a piniata.
Prize goes to the person who comes up with the best self-depreciating statement.
You will obviously all go home with party packs.
That is all.
(ps. L...could not link my video no matter how hard i tried)
Monday 4 July 2011
Riding the emotion roller coaster
What did I do today? I mostly slept.
What do I do most days? sleep and watch mind rotting TV.
Am I likely to be going anywhere this afternoon/ on wednesday/ friday?....ooops, of course you wont.
The highlight of my week? getting out of the boundaries of the 4 walls that is my house to go to a bloody psychiatric hospital.
I breathe in and out, exchanging carbon dioxide for oxygen.
I have a pulse, it proves that my blood is circulating around my body.
My heart is beating, I am alive.
My brain is thinking, more evidence I am alive.
My nerves are sending impulses to my fingers and toes, making them tingle, so I am not completely numb.
I have little purpose, I feel once more like I am going through the motions, only this time a little bit more pathetic than before because now I am so completely dependant on my husband for getting around. I feel caged, I ask myself what is the point of staying here? What is the point with carrying on with the DBT
Then there's the pills. Sitting in a metal safe (unlocked). 5 different pills. Antidepressants, mood stabilisers, anti anxiety pills, epilepsy medication, special night time antidepressants. I am really starting to resent that little metal box. It is a chore going there 3 times a day to get my pills that rattle around inside me. It is such a bloody effort and I really hate it. It is such a silly feeling to hate and resent a box full of things that are helping you; but I do and it is building to the point where I want to get a bloody great sledge hammer and pulverize the metal box (pills included) until it is a warped, twisted tiny ball of nothingness.
THEN I will get in the car, drive to the nearest bottle-o get shit loads of alcohol and go wild and crazy on the streets of Coomera (or maybe I should drive to Surfers and go wild and go crazy, it would have more street cred)
I feel such a huge disconnect with the real world right now, it is impossible for me to see myself ever fitting back into it. I feel that every effort I am making to make some money is just a joke and a waste of time, money and effort. I am an emotional, financial and whatever else sponge and it is my poor husband that takes the weight.
What do I do most days? sleep and watch mind rotting TV.
Am I likely to be going anywhere this afternoon/ on wednesday/ friday?....ooops, of course you wont.
The highlight of my week? getting out of the boundaries of the 4 walls that is my house to go to a bloody psychiatric hospital.
I breathe in and out, exchanging carbon dioxide for oxygen.
I have a pulse, it proves that my blood is circulating around my body.
My heart is beating, I am alive.
My brain is thinking, more evidence I am alive.
My nerves are sending impulses to my fingers and toes, making them tingle, so I am not completely numb.
I have little purpose, I feel once more like I am going through the motions, only this time a little bit more pathetic than before because now I am so completely dependant on my husband for getting around. I feel caged, I ask myself what is the point of staying here? What is the point with carrying on with the DBT
Then there's the pills. Sitting in a metal safe (unlocked). 5 different pills. Antidepressants, mood stabilisers, anti anxiety pills, epilepsy medication, special night time antidepressants. I am really starting to resent that little metal box. It is a chore going there 3 times a day to get my pills that rattle around inside me. It is such a bloody effort and I really hate it. It is such a silly feeling to hate and resent a box full of things that are helping you; but I do and it is building to the point where I want to get a bloody great sledge hammer and pulverize the metal box (pills included) until it is a warped, twisted tiny ball of nothingness.
THEN I will get in the car, drive to the nearest bottle-o get shit loads of alcohol and go wild and crazy on the streets of Coomera (or maybe I should drive to Surfers and go wild and go crazy, it would have more street cred)
I feel such a huge disconnect with the real world right now, it is impossible for me to see myself ever fitting back into it. I feel that every effort I am making to make some money is just a joke and a waste of time, money and effort. I am an emotional, financial and whatever else sponge and it is my poor husband that takes the weight.
Thursday 30 June 2011
F off FOF
1) ANNOYING INTERFERING PEOPLE.
I think I have experienced my first out-and out judgement on me and my mental illness. By a basic stranger (friend of a friend), but someone i've never been anything other than nice to. It feels strange because I do project judgement onto myself, but when you know it is real and there in flesh and blood it makes me ANGRY.
I am only a risk to myself. I am a mother of 2 children and am sensible enough to know that if I become a danger to anyone other than myself I will phone up my doctor and get sent to hospital. I go to Belmont rather than Currumbin because my husband works in Brisbane and is therefore a more convenient choice for us. No other sinister reason than that.
I would never be around anyone when I am feeling unsafe, apart from people who know and I trust and people I know understand. I would not do anything to anyone else, especially not anyone else's child.
I would also not be around other children if I thought I was a threat to anyone else than myself and I have DRs, psychologists and so on all telling me the only person I am a menace to is myself. And I am also only a menace to my ownself on my own property/ hospital.
If you happen to be said friend of friend, then feel free to get my phone number and call and we can have a conversation about this because most of the time I am good, this blog is about me setting free emotions that would otherwise build up and make me not safe. You have made me feel angry by not directly asking friend the questions you so desperately want to ask.
Now on to my actual topic of blogging.
This epilepsy business.
I hate it.
Can someone direct me to the point in my life where I took the wrong path made the wrong decisions to do the wrong things. To try so hard to be the person I was not supposed to be. Show me where I should have gone and who I should have been to avoid all this messed up shit that goes on in my head.
Is it because I have tried so hard all my life to fit in with people I had no right fitting in with? is it because I was always a try hard? is it because I didn't make a stand when people bullied my friends, or that I could not fight back when I was being bullied. Was I trying too hard to be someone I wasn't, was it I wasn't trying hard enough to be what I was?
Whatever it is, whatever it was I have made it on to someones shit list, and I am now a slave to 7 different medications which make me feel like the living dead, a huge burden on my husband who has to carry the weight of my illness on his shoulders and now also has to be my transport, my financial support my cheer leader. He is my donkey my "irritating talking beast of burden" to quote shrek!!
I am doing everything possible to make myself come good, to make myself a better person, and then just when I think everything's going so well, I get kicked down to the ground and I have to pick myself up again. Well this time it is not so easy and I feel like I am clawing my way across the floor.
I feel like I am a let down to my family for being so honest
I feel like I am a let down to my family for being so far away
I feel like I am a let down for not being a functional wife
I feel like I am a let down for not being a functional mum
I feel like a let down for not being a functional person
I feel like a let down for being a slave to pills
I feel like a let down for letting a stranger make me feel so bloody angry
I feel like a let down for letting this stranger question every last thing about me
I feel Angry about leting this stranger question whether I should even continue to blog
I feel angry, numb, empty, failed, malfunctioned, stupid.
I think I have experienced my first out-and out judgement on me and my mental illness. By a basic stranger (friend of a friend), but someone i've never been anything other than nice to. It feels strange because I do project judgement onto myself, but when you know it is real and there in flesh and blood it makes me ANGRY.
I am only a risk to myself. I am a mother of 2 children and am sensible enough to know that if I become a danger to anyone other than myself I will phone up my doctor and get sent to hospital. I go to Belmont rather than Currumbin because my husband works in Brisbane and is therefore a more convenient choice for us. No other sinister reason than that.
I would never be around anyone when I am feeling unsafe, apart from people who know and I trust and people I know understand. I would not do anything to anyone else, especially not anyone else's child.
I would also not be around other children if I thought I was a threat to anyone else than myself and I have DRs, psychologists and so on all telling me the only person I am a menace to is myself. And I am also only a menace to my ownself on my own property/ hospital.
If you happen to be said friend of friend, then feel free to get my phone number and call and we can have a conversation about this because most of the time I am good, this blog is about me setting free emotions that would otherwise build up and make me not safe. You have made me feel angry by not directly asking friend the questions you so desperately want to ask.
Now on to my actual topic of blogging.
This epilepsy business.
I hate it.
Can someone direct me to the point in my life where I took the wrong path made the wrong decisions to do the wrong things. To try so hard to be the person I was not supposed to be. Show me where I should have gone and who I should have been to avoid all this messed up shit that goes on in my head.
Is it because I have tried so hard all my life to fit in with people I had no right fitting in with? is it because I was always a try hard? is it because I didn't make a stand when people bullied my friends, or that I could not fight back when I was being bullied. Was I trying too hard to be someone I wasn't, was it I wasn't trying hard enough to be what I was?
Whatever it is, whatever it was I have made it on to someones shit list, and I am now a slave to 7 different medications which make me feel like the living dead, a huge burden on my husband who has to carry the weight of my illness on his shoulders and now also has to be my transport, my financial support my cheer leader. He is my donkey my "irritating talking beast of burden" to quote shrek!!
I am doing everything possible to make myself come good, to make myself a better person, and then just when I think everything's going so well, I get kicked down to the ground and I have to pick myself up again. Well this time it is not so easy and I feel like I am clawing my way across the floor.
I feel like I am a let down to my family for being so honest
I feel like I am a let down to my family for being so far away
I feel like I am a let down for not being a functional wife
I feel like I am a let down for not being a functional mum
I feel like a let down for not being a functional person
I feel like a let down for being a slave to pills
I feel like a let down for letting a stranger make me feel so bloody angry
I feel like a let down for letting this stranger question every last thing about me
I feel Angry about leting this stranger question whether I should even continue to blog
I feel angry, numb, empty, failed, malfunctioned, stupid.
Tuesday 28 June 2011
Epilepsy and applying DBT skills.
So I have epilepsy. No ideas as to how or why I have it, it is just there in my brain doing its thing whenever it feels like it. The solution is more medication on top of all the psychiatric drugs I take...you will hear me rattle long before you see me!!!
Oh and I can't drive. At all. But as my husband (who has swallowed my DBT manual) stated: one of my goals is to lose weight and get fit. If I want to go anywhere it will now be by push-bike which will aid me in my weight loss and my need to do some exercise, so there is some slightly warped good coming out of something. I'm not really relishing the prospect of cycling all the way down the road which is really uppy-downy but am looking forward to the enormous sense of achievement and hot bath after it is done.
I refuse to become a home-bound crazy lady and I will use this as much as I can to my benefit. I will have to make sure I remember this on days when everything seems so hard.
I have also demonstrated to myself how well I am doing in DBT because I can accept it for what it is, without any judgement and sit with it. I have also used my "decision box" and can see and accept that although it is important to me, it is out of my control, and there is no point in wasting time and energy worrying over it...I'll just make another scarf or 10 instead!!
It also isn't the miracle answer for why I went crazy in the first place, but that would be too much to expect/ wish for. I am a medical curiosity with my many quirks, but have a good team of doctors and psychologists looking after me and have faith that they will help me through this to recovery.
Oh and one last good thing about the epilepsy medication is that it suppresses the appetite, and therefore counteracts the seroquel munchies that are responsible for a shocking weight gain!!
Enough waffling, thanks for reading xxxx
Oh and I can't drive. At all. But as my husband (who has swallowed my DBT manual) stated: one of my goals is to lose weight and get fit. If I want to go anywhere it will now be by push-bike which will aid me in my weight loss and my need to do some exercise, so there is some slightly warped good coming out of something. I'm not really relishing the prospect of cycling all the way down the road which is really uppy-downy but am looking forward to the enormous sense of achievement and hot bath after it is done.
I refuse to become a home-bound crazy lady and I will use this as much as I can to my benefit. I will have to make sure I remember this on days when everything seems so hard.
I have also demonstrated to myself how well I am doing in DBT because I can accept it for what it is, without any judgement and sit with it. I have also used my "decision box" and can see and accept that although it is important to me, it is out of my control, and there is no point in wasting time and energy worrying over it...I'll just make another scarf or 10 instead!!
It also isn't the miracle answer for why I went crazy in the first place, but that would be too much to expect/ wish for. I am a medical curiosity with my many quirks, but have a good team of doctors and psychologists looking after me and have faith that they will help me through this to recovery.
Oh and one last good thing about the epilepsy medication is that it suppresses the appetite, and therefore counteracts the seroquel munchies that are responsible for a shocking weight gain!!
Enough waffling, thanks for reading xxxx
Sunday 26 June 2011
dissociation and amnesia.
This morning I am experiencing short term memory loss. It is frightening. I honestly can not remember basic things that I should know. Things like where I have put things, or putting things in completely the wrong place, have I taken my medication? and the list goes on...I find myself in a room going round in circles trying to remember what I was looking for or why I even came into that particular room. I hate my Brain.
Tomorrow I finally get to see my neurologist to find out what is causing the abnormal brain activity in my right frontal lobe, I hope I get some kind of answer and not just another long list of tests I have to have. At least I know it is not a brain tumour as I had an MRI a few weeks ago.
My arm is starting to hurt, which means my burns are getting infected so I am going to have to clean them out and dress them and start the healing process. I really wish I could give up smoking to remove that option as a method of self-punishment, however I can't it is my one "crutch" that helps me get through the day. And I do believe that my brain would devise another evil form of self punishment if that one was removed.
I feel partially dissociated most of the time. It is an odd feeling, it is kind of like in star trek when they get beamed up. As they are being beamed up they are all pixellated, and that is how it feels. That and spending hours of the day staring into space and not being in the present.
Oh the joys of being a mentalist.
Thanks for reading my rather uninspired post xx
Tomorrow I finally get to see my neurologist to find out what is causing the abnormal brain activity in my right frontal lobe, I hope I get some kind of answer and not just another long list of tests I have to have. At least I know it is not a brain tumour as I had an MRI a few weeks ago.
My arm is starting to hurt, which means my burns are getting infected so I am going to have to clean them out and dress them and start the healing process. I really wish I could give up smoking to remove that option as a method of self-punishment, however I can't it is my one "crutch" that helps me get through the day. And I do believe that my brain would devise another evil form of self punishment if that one was removed.
I feel partially dissociated most of the time. It is an odd feeling, it is kind of like in star trek when they get beamed up. As they are being beamed up they are all pixellated, and that is how it feels. That and spending hours of the day staring into space and not being in the present.
Oh the joys of being a mentalist.
Thanks for reading my rather uninspired post xx
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