What is the impact of an epilepsy diagnosis?

For most people with epilepsy the most over-reaching and problematic epilepsy based issue that they have may not be their seizures. For some, I include myself in this it is the thing that comes with it. The epilepsy package. The package that often leads to further, almost cyclic misconception and stigma and quite often this is not deliberate.

So I would argue that these that are almost afterthoughts for most people and are the very things that we need to talk about.

My epilepsy package

If you can, put the seizures aside for one moment and think about the very impact of the diagnosis on a person with epilepsy’s life. It is this that often becomes a sticking point for people without epilepsy. Mainly because this is not as simple as tiredness and being grumpy. And the way I see it, it can be separated into two sections.

1. Things that are in your control or put crudely are our problem. For example medication and prevention of our own seizures (as much as this is possible). It is also really hard to just let this go and not take the process of having to take pills as an extra knock. We shouldn’t. Simple as that, we just don’t deserve it.

Secondly, things that are beyond our control, i.e. people’s reaction’s to the condition and measures which need to be taken in order to maintain a functional life. Such as, avoiding public transport if you are feeling a bit shaking or taking that extra half day off work to sleep. Or having to take public transport because you can’t drive. These are things that people just need to be educated about so they can differentiate between it can so easily lead to misconceptions.

AEDs

Medication can often have side effects which have a direct impact on our lives, we all trade between seizure control and how sloshy headed we want to be or how much weight we are prepared to put on or even how inadvertently angry we get. Some of us have to make some really tough life choices that can have a serious impact on your lives.

Let’s not forget good old fatigue and the NEED FOR SLEEP and the non negotiable routine. All these things are hard enough for us to come to terms with; friends and family manage pretty well, but employers can struggle to get past (disabilities) that they can not see. I can think of other invisible things that people seem to have no problem believing in. But these are simply people with epilepsy trying their best to manage their condition and live a full life. The last thing that is needed is a person delving into this space by undermining this sacred space and questioning the person’s ability to do so. Surely this can only exacerbate the situation? Take your control back, if you haven’t got it.

Just saying…

Periods of long term (epilepsy) illness can be… No they are knackering. But after all of that is done, to be honest I don’t fancy standing on a bus stop or waiting for a train. In fact the outside seems like quite a daunting prospect, as the period of seizures has sapped a bit of confidence. So it is a case of hopping back on the bike. However I tend to do so gingerly. This is often hard to explain to people. I haven’t had to do this for while but it is an embarrassing experience having to do so, as things that were predictable became for a short period not so. I know that this aspect is overlooked by people who lack knowledge about epilepsy. I can’t seem to understand why visibility is proof of existence and validation.

The pressure to return to “normal” is a heavy load to bear. Speaking from experience, I have ended up in a cycle of illness that after a while became non epilepsy related due to the anxiety of being away from work. Which in turn made my seizures worse. So around the cycle went. I have always been fortunate enough to have good support from my family and employer.

People with epilepsy are vulnerable to many things such as unemployment and poverty. But one striking observation is the link between epilepsy and mental health issues. For example; people with epilepsy are five times more likely to commit suicide. I can only deduce that this is not medication related but could be a risk of what I have grown to call the epilepsy package.  Like I said before, the seizures I have a say in. My mental health would be something that I would need a wee bit more help with and also carries a stigma if not more so that epilepsy.

However all this starts from some very old misconceptions as a result of a bit of an unfair start (putting it mildly). Even now on this planet in this year, there are still people that still consider people with epilepsy possessed or having a demon. If I had a daemon at least it would be slightly more interesting.

The only way to deal with these sorts of ridiculous intricacies about epilepsy is to talk with all people about the condition. The tricky thing is when having come from a background in education, I can tell you that there is no compulsory & specific training for epilepsy is the classroom; be it first aid or social discussion, both are equally important and need to be done. What is the point in having an elephant in the room if you aren’t going to say “Oh, there’s an elephant in the room”! And knowing the classroom environment, it is the perfect place to whittle out misconceptions that have been embedded from the dark ages.

With epilepsy we only ever scratch the surface of the human experience of what life is actually like. The actual impact of the diagnosis. We look at the seizures and the obvious and important dangers but there is a spaghetti junction of complications that means it simply can not and never will be simplified.

So how about we get on with it eh? :)

Thanks for reading

Ant

 

Stigma that comes from unlikely places

Growing up in a large family as I did. With family around who went out of their way to understand the then even more mysterious and dangerous world of neurological conditions; I consider myself lucky to be in the situation I am in now. Even as an adult I have had many people in my life who have just accepted me as I am. Many people are not so lucky

Even if you take my parent’s acknowledgement of my seizures, and their persistent chasing of what they considered to be a thorough examination by a neurologist. Simply getting to see one was a battle.

This is in stark contrast to something that I heard of recently.

I have become aware of a families who know that their children are having seizures but they do not want to take the children to the doctor due to a cross generational fear of what the community will think of their children. In my opinion, I have stronger thoughts about the families rather than weather I think the children may have a demon! In this day and age is it simply not good enough to sit and observe the epilepsy happening un-monitored or treated. This makes my blood boil. It is the opposite of what I had.

All this aside. The seizures are a barrier for these people and treatment could improve quality of life. Everyone deserves a chance at this. I missed out on education and social things simply because my epilepsy was unpredictable.

So let’s compare, a before and after study of my life (as I can only really speak for myself) based on prior to my medication and after the introduction on medication. My life has really not been this simple…

Before

Seizures a plenty, of most varieties. We didn’t know the cause. The stress caused more. Couldn’t stay in school. Teacher thought I was faking (teacher was delightful). I wasn’t allowed to eat peanuts… because you know… epilepsy, this was mostly driven by fear and what ifs. Everyone was scared. I was generally nursing some sort of injury. On a sad note, I knew no different.

 

After

I went to university, and could live on my own. I could join my friends for social things. I could play rugby. I got a girlfriend. I went on holidays. I could give myself space for the first time. I still have seizures but life is a compromise but it is a life. What I missed out on in school I picked up on later mainly because I wasn’t having a seizure in class.

 

If the families I mentioned earlier knew about the downsides vs ups  and applied them to making moves that could change the life of a child forever. Yes, there could be some discomfort however the freedom and long term gains could out weigh this? I know some people go through some terrible times when trying to medicate effectively but why give up before you start? I also know first hand that side effects are crappy, but we weigh this up too. We put these on our own scales and risk assess ourselves constantly. We might not like it but at least we had the chance.

 

There has been much reported lately on @epilepsyu about the lack of availability of treatment for epilepsy in the sub-continent and China. This also angers me, however the more I think about this the more I become disheartened by the idea that people in the UK, who have good access to neurology departments, are shying away from treatment. I understand what there is to lose as an adult (that is a different topic all together). Treatment is available in the UK for all, IT’S FREE!

Forget being scared about what the doctor will tell you, it is frighting.

Things will change. However hopefully they will get better.

Generational fear of epilepsy comes from the very thing that we don’t do to people with epilepsy and what is associated with it.

We don’t put people in institutions anymore!

As for the unknown, guess what, we know a lot more now.

Please don’t just observe it happening. Do something about it.

Thanks for reading, please leave a comment.

Ant

 

 

Holiday Insurance Debacle

It was just about time that I book some leave and go away on holiday. I didn’t go on holiday at all last year, and to be honest I could do with a break or even an enforced stop. So I went online and booked myself a 10 day holiday away somewhere hot.

So with the flights and hotel booked there was one more import and thing that I had to do before I could go away. I had to arrange some holiday insurance. Now I’ve done this before and in the past it hasn’t been a problem so why should it be one this time? In fact I would go as far as to say that it was a doddle. An absolute doddle! So easy, that I don’t even remember who I insured with. So I had no starting point, but hey, why am I worried? Its a doddle.

For the record my epilepsy is well controlled, I do not lose consciousness and it is caused by a DNET tumour which was removed only partially as not to damage vital functions in my brain. Functions such as, spacial awareness and co-ordination of movement. I consider all this a reasonable trade off. Also I have not been hospitalised since I was seven years old. I am 31 now. So I began my insurance search.

Try 1. Confused.com’s pre-existing condition insurance search (I have to admit, the title was nearly so long that I got bored and clicked on something else). The questions covered the basics, what was the nature of my pre-existing condition? As well as the details of it. But despite answering honestly, smiling at the computer and being polite at it they still threw out quotes ranging between £1200.00 and £1600.00. This was, incidentally, noticeably more than the cost of the holiday. Couldn’t they see I was being honest and smiling? Needless to say, I did not walk through door number one.

Try 2. Insure n go do offer a discount to Epilepsy Action members with this company however epilepsy action make it very clear that members are subject to InG’s policies, and that the two companies are very much separate entities.

I found, after a bit of probing that InG would not cover me for travel insurance. I went through all their questions as I did with try 1. Answering honestly (and smiling), because I can’t afford not to. When they sent me their quote, I noticed that something wasn’t quite right in my questions answers. But nonetheless I had a quote for £256.00.

The question that I was concerned about was, “was all of you tumour removed”. They only had the choice yes or no. So I answered, no, as much was removed as could have been in a safe manner”.

The person on the end of the phone marked this as a yes. The last time that I checked never in the history of insurance quotes has no meant yes or vise versa. This was an important detail for me because I wanted cover for the brain tumour, it is the symptom that causes my epilepsy. No tumour, no cover.

It then got interesting. On speaking to them, they told me that if I answered no to having all my tumour removed, then they would not be able to cover epilepsy. To which I replied “You won’t be coving a lot of people then I thought , also you would have been quite happy to send me off on holiday with what is effectively a void, meaningless and expensive piece of paper, that says nice things but I would have a nasty surprise from if I tried to use it. Also I would have been left responsible for the person on the end of the phone’s inaccurate (I’m being kind) questionnaire marking. How often has that happened before?

To his credit and some persistence they sent it off to the underwriters. No doubt they would come back with an astronomical quote for a low risk person. The message that they will be trying to tell me through this quote will be, go away! So I saved them the bother. My search continued, but I was was not down heartened yet.

Try 3. AllClear travel – Full Cover £247.00 :) No fuss. Seriously it was that easy for me to arrange. I filled in the form online and I arranged realistic and comprehensive cover for me. I was impressed.

From my experience in finding travel insurance I am genuinely concerned about the amount of time it takes to find appropriate and affordable travel insurance for people with existing conditions. Also the possibility of people being sold inappropriate coverage simply because a salesperson needs to hit their target. This is too important a matter to mingle in with targets or even get slightly wrong.

Always read your insurance documentation through properly. Make sure that the questions are as  you answered them. If there is an admin charge, I honestly think it is worth it. If I hadn’t have done this I wouldn’t have spotted “Sneaky Joe’s mistake”.

Also the git from one of the companies said to me “it’s your choice to take the policy”. Now I thought about this as I was on the phone to him, I shared with him the conclusion that I came to. I told him quite directly that it wasn’t a choice if the company’s policy is to cover all or nothing. So by looking at the definition of choice we do not have much of one. I told him, that he can not politely tell people to take it or leave it and expect them to be happy about it and say thanks afterwards. Oddly he didn’t have any answer. Maybe computer said no.

 

Thanks for reading, please leave a comment

 

Purple Day- SEDEP: How much do you want to know?

Its only Wednesday and already I feel like someone owes me a day. Mum and I are sat here ready to submit to the week, on the condition that we can watch Holby City and scoff this quite frankly blissful birthday cake. I have to say that that is hardly a compromise.

With Epilepsy Awareness Day being so close I wanted to share with you something that really made me think. I normally try and get my head down live my life but this really made me stop and think.

It was a conversation that I had with some medical professionals and I was waiting for a time to share it.  Now is as good as any. So here are my thought on it.

Last week I sat freely discussing a topic that I had never openly discussed with ANYONE before. Despite being peppered with literature and efforts to raise awareness in hospitals and on social media. I have got to the 31st year of my life without the conversation about SUDEP, this was the first. It was like the first thing that we did was address the elephant in the room. In fact we didn’t address it, it sat down had a coffee and lead the bloody conversation as normal and as plain as day. It was a breath of fresh air.

And for someone who thought that they knew about epilepsy, I’m ashamed to say that I knew very little really about SEDEP. I knew what it stood for but this was a 90 min conversation and I used that up pretty quickly.

Now the question I was asking myself on the walk back was. Why had I never discussed it? I’d had information. But who reads every leaflet (sorry if you do)? Who really wants to know about this topic… Really? I never did in the past.

But I do now. I want to know as much as they will tell me. This is because prevention has served me well so far.

But what will they tell me?

So this was what we discussed. What did I know about SUDEP and did I want to know? There was more but I don’t want to be inaccurate, that’s it in a nutshell.

I’ve already told you the first question. What did I know…? Well, what it stood for. I am ashamed to say that I figured out what SUDEP was, from its name. However I had never in my 23 years of epilepsy ventured beyond that. Even worse I see articles every day if not hour on twitter that could tell me more. But I have never clicked on them.  In my defence I am now well informed. 

Now these might sound like easy questions that were posed to me,  however there are so many variables that make sharing information more complicated. But this doesn’t change MY opinion whatsoever. A high risk patient is a high risk patient, and there are preventions that people can take.

What variables? Well, what if you have a person with epilepsy who has uncontrolled seizures and also lives and manages depression and anxiety. Is it right that your life balance that you carefully navigate, be tested by being told that you are at risk of SUDEP? But with the shoe of the other hoof. Is it right and fair that this information be withheld ‘just in case’?

What do you think?

Variable number 2: You have a child with uncontrolled epilepsy whose parents chose not to tell their child the risk of SUDEP. This child moves into adulthood, does the Dr tell the young adult of their risk?

What do you think?

I strongly feel that all people with epilepsy should be aware of and discuss the risks of SUDEP, however my opinion is obviously just that, my opinion. I say all people because our levels of control can and do change with no warning. Then before we know it our quality of life has changed and people who were of low risk are now no longer of low risk. What we thought and hoped was irrelevant to us is now very relevant to us. Therefore the information that we were given ‘just in case’ now becomes a formative measure for our daily epilepsy routine.

As I mentioned earlier, SUDEP is a particularly traumatic topic to discuss for many. It directly links epilepsy and death; and that it happens to otherwise healthy people. We all find it hard to talk about, and to negotiate the link that we have with it. In the twitter community we support each other with a great deal of sympathy and empathy. We all talk freely and openly and quite frankly excellently about AEDs, seizures, side effects, injuries this list goes on. To some extent, we all have experience of these, we all have something to add. I wish we could have a more open dialogue about SUDEP. We do everything else so well.

The risk factors for SUDEP are here , you’ll notice that routine is the key. I’m sure many of us can relate to that anyway. I find that hard sometimes especially when you think it isn’t working. 

Thanks for reading my post, I will happily reply to any comments. That is unless you are spamming me with some sort of attempt to sell sports wear or contact lenses. 

 

 

The last chance (or a chance) of full control?

For many, me included being seizure free is and has been the pot of gold on the end of the rainbow. We all keep looking for it and with each new adjustment or medication we get a top up of vigour and motivation to achieve this goal. For me it has ended with that, “well maybe the next one” resolution. I have carried on this way since I can remember. To be perfectly honest, until recently I still believed that AED’s were the way that I would achieve this. But we all have our limits and lets be honest I still have a tumour in my head.

I have been waiting for a surgical consultation for the past few months, which is possibly why I have written nothing. I tend to have a policy of don’t say anything if you have nothing useful to add. Anyway my appointment date came. This one was different. The doctor and I were not going through the motions which we would normally do. This is how it normally goes: I would go in, tell him about my seizures, he would listen and then we would decide on one of the following options, depending on my health. My AEDs would be adjusted up, down, or a newbie would be added. Oh not forgetting the last one. Everything staying the same. This is probably a very familiar tale.

As I said, this time was different. I was being assessed for possible suitability for surgery as an option to stop my seizures.

Now a bit of time has passed since then so I have been able to stew on this a bit. But in that room, you can’t exactly say that I was thinking with the most clarity and to really help things I could feel an aura starting. Splendid.

In a nut shell. I am seeing a surgeon, getting new scans etc. What it could mean is, that I could be seizure free. I could also mean a lot of other things like not being being seizure free and having other things to worry about too.

In hindsight I sort of wish that that appointment had that going through the motions feel to it. I took comfort from that in the past. I made me feel that, despite nothing changing that I was still okay and that I was going to be. However maybe that was me just wanting to be pacified. Now the future has new choices and uncertainties which I am not used to as I am sure others aren’t.  But I don’t think that I can shy away from this one. Either way its my choice.

I wrote earlier about clarity, there is still a lack of clarity but I think that will come with more information and time. Thankfully both of which I will get and have, many people in a situation like mine aren’t so fortunate.

Thanks for reading, I’ll do my best to answer your comments. Unless you are spamming me about sunglasses or shoes, you know who you are.

Ant :)

Is Ignorance Bliss?

Lets imagine for a minute that instead of living my life knowing about and finding out about epilepsy (because its part of it), I ignored it and denied its existence and the effect that it was having on my life. As you can imagine for most people this would be quite a difficult prospect.

In my humble opinion the range of difficulty that we are looking at would be on a par with hiding a fully grown African Elephant in your front room. It is ridiculous

But if you are going to do it, it requires serious thought and planning! This is what makes it a sad and lonely choice.

But not the only one.

Now, don’t get me wrong I’m sure that this may be a doable situation as you can see the elephant is basically invisible to the untrained eye, untrained being someone who was shopping for an elephant lamp…

Right. Back to the original point for a bit. There may situations where people, instead of seeking treatment try to manage epilepsy without any help. Please note that I am using the term manage loosely. By definition that word would imply that there was some sort of organisation or intervention involved .. What if there wasn’t?

What would that make those people? By denying their own condition, are those people denying an aspect of themselves too?

I hold the opinion that watching a person with epilepsy live and not granting that person treatment (if there is treatment available) is tantamount to neglect. It is not good enough to say that a person is worried about stigmatising the person, If this is the reason to withhold treatment then this is still neglect. Do you any less have the condition because you decline the treatment?

In addition to this, the person who decides that the person should or should not seek treatment is, actually doing this for selfish reasons not with a caring heart. And wanting that person to achieve all in life that they are capable of. If I have not had medical  intervention though out my life I would not be able to function as adult. This decision was taken by my Mum and Dad without so much as a hesitation. Even the most dangerous of surgeries. Being denied these, would have denied me the opportunity of a career and a life. Yes I live with the knowledge of people’s misconceptions of epilepsy but as a wise man or woman once said. ” Fuck em”.

Ignoring the elephant in the room and supervising the non-treatment of conditions such as epilepsy must be, and probably is, a selfish, act of neglect. I am thankful that treatment options always outweighed possible unknown effects of peoples’ ignorance. But in my experience, people are more understanding and willing to learn than we give them credit for.

It is not good enough anymore to turn the other way to treatment or the condition because of stigmatisation. The regrets if it went wrong would far outweigh whatever people fear.

Having said all this, maybe I’m looking at this from the wrong way around. I feel that all people with epilepsy should have every opportunity without hesitation to gain control of a condition that we know can sometimes take a long time to do so. So the sooner treatment starts the better. But this is different to my point. I’ve been talking about seeing the problem, and doing nothing. There are some people who have a genuine fear, a fear that goes back generations. A fear that makes them mouth the word instead of saying it. Now its these people that I worry about. It is these people who need the support.

Thanks for reading.

Ant :)

To be taken orally… Really?

This has absolutely nothing to do with my blog, but I am writing this at the same time watching a film about mankind harnessing the power of “dark energy” only to underestimate its power. They only have until the end of the… film basically to save the world from destruction. I imagine it all works out fine, but I’ll keep you posted as we go along, if the film is shocking then I’m going to sack it off.

Millions if not billions has been spent on epilepsy medication development since year dot. Many of us have benefited from some spectacular choices and combinations of medications that mean we can chugg along quite nicely. We make a hit or miss decision of “pick and mix” pills, its either the best thing to happen, the worst thing to happen or even worse… nothing happens.

Pic-n-Mix1

I have noticed that millions if not billions has been spent on many other types of medication, and as the years have gone on the choices have expanded. This is an excellent thing. We can’t always access these drugs and this is another issue but thanfully the research has been done in the first place.

I am pointing out the obvious.

There is just one comparison I would like to make.

If we compare developments in technologies to developments in AEDs there is one massive disparity. Size.

Phones, computers, bits inside computers and all other technology stuff are all getting smaller yet better. However my newer, more modern and better tablets seem to be getting bigger and more plentiful. I.e. more to swallow in one go. Its colourful gravel.

When I say bigger, I’m not just being fussy. I have had no problems swallowing these things in the past. Nowadays these things are huge! You can honestly question which end you put them in. If I didn’t know any better, or could read, I would be cautiously looking south :-S.

Film update: male protagonist is in therapy, he doesn’t get on with his daughter. He is highly likely to go through an ordeal which will save the world and bring him closer to his daughter. Just a thought. 

Have you ever looked at a phone or a computer or thought, wait, this is far too sleek and stylish? They should make these things bigger and more clumpy. No.

So why am I looking at AEDs and thinking that we have moved on to suppositories or a job lot of suppository packaging? It is basically like eating shoes, bad shoes, not even good shoes, ugly clumpy, not even sleek and easy to swallow shoes..?

I am going to add into my daily calorie count (I have NEVER counted my calories). I am going to add a pack of butter with which to lube up my AED shoe size tablet torpedoes. They will just glide down and breakfast and lunch with be covered all at once.

Film update:The world hasn’t started to end yet… But it looks like this guy needs therapy too. Must be all that dark energy flying around. 

Despite my tablets coming with a “not for beginners” label on them. We have been getting on rather well. I am secure in the knowledge that these tablets will not make my eyes and finger nails blue. Or as by good friend described it “basically becoming an actual avatar” or a filly paid up member of the blue man group. I am almost certain that becoming an avatar would not have been on the cards but with my old pills blue nails and eyes were, hence the MASSIVE new ones. But it did get me thinking.

Imagine if they didn’t stop me from taking the tablets, what if they said “well if they work, its up to you”… Good job they weren’t that blasé. Were some side effects worth the risks if the meds were that good?

I turned the film off, it took to long for the world to harvest dark energy. This was mainly because of was a series. I didn’t think that I was ready for that kind of commitment ;).

Despite all the progressions in what medications for people with epilepsy can do. I think there is some kind of double dare to us/me saying “I dare you to add this monster bad boy to your cocktail of goodies”. It at least makes me smile. If only apple made and samsung made AEDs.

Thanks for reading, please leave a comment. Ant :)

Mushy peas and mushy head… Just Mush

I wrote this blog over two time periods. The first, when my brain is getting used to new meds and I was fighting to keep my eyes open. The second was when I was used to the meds and noticed that I failed to click publish when semi sedated on multi-meds. It is FAR from a literary experiment. Have Fun!

I’m really not used to not used to being unable to predict when seizures would happen. So these last few weeks have been a learning curve. I feel like someone who is being overwhelmed by something, despite its familiarity. Its as if I am a life long musician who is learning a new instrument.  The knowledge is there however the second nature like familiarity is far from present. Like a trumpet player taking up the piano after 20 years or parping and rarting and really making a hash of it (I really could have just said that in the first place)…

Everything takes thought now. It lacks the intuition that was there before. Which in real terms has made things like walking down steps problematic but not impossible.

nacho-guacamole

My head is an odd place to be at the moment, it feels like I’ve borrowed it My head being in an odd place isn’t even me trying to say I’m feeling down, I actually think my brain has vacated the space between my ears and left me with tapioca pudding as my primary decision maker. At times my “pudding” is as clear and quick (I use that term loosely) as it has always been. But then at other times, it is thick and claggy like old guacamole. Any ideas or thoughts that try to trudge through this turgid mess break off half done, as if they were cheap nachos in dip. From there I am almost forced to give up. I am almost certain that thinking clearly is an important process but without it I a am only good at two things. 1. Netflix and 2. Eating. If you are lucky I can combine the two. This would be a good day. High five…

I wrote those paragraphs a while ago but did not publish, this is possibly because I was waiting to see what happened or I just forgot. Both are likely, however I would be more inclined to go with the latter.

My meds are bedding in now, I think I am pretty much used to a gloopy head it has caught up to me or I have just acclimatised to it. Either way I am not being obstructed, which is good. Granted the pills are doing absolutely nothing for me, but I think that is to be expected when there is a fine specimen of a DNET tumour in my brain. So I am at the point of drawing a THICK line under all the different meds, and just saying no.

I’ll just see how I go with what I have. Nothing new please, just the status quo would be splendid. Then. Wait for the surgeon.

Spending time watching awake craniotomy vids on YouTube has been oddly therapeutic for me.

https://www.youtube.com/watch?v=16u4di_lKWI

My parents and siblings however are truly scarred as a result. Maybe for life, so in a way… Job done? On the other hand they are also truly scared for me. But, in for a penny in for a pound.

I do feel the need to look at the process of brain surgery. Mainly because I take comfort from the fact that others have done it before me. I have even done it before, but it was different then. There was less to lose. That I knew of, at least. So my thinking is that if you loos at something long enough, and its complications then you can only accept the whole package. As the outcome is worth it. If the outcome isn’t worth it. I’m not going to do it.

Oh shit, I just typed that, I should at least stick by that now… Now I have to think if the outcome is worth it. Crap! Oh, I give up, that’s for another day.

Anyway, have fun and cheers for reading. I was going to blog about the NHS so it could have been worse ;)

Please leave a comment if you want, I will reply x Ant x

 

 

 

Lots to think about, is it weighing down on my head?

Optimism is dangerous. It can lead you down a path yet you only find a dead end you are left with no option but to turn around and head back the way you came.

Maybe all the excitement about possible surgery has lead me to take my eye off the ball. I think, however I am not exactly sure if I had a different type of seizure today. It was really quite peculiar, and I am at the point where I am not exactly sure if it was a seizure at all. The only thing that makes me think that it was, was the neurone scrambling headache that followed.

Scrambled-eggs

It was over in an instant, I felt it, clear as day. A sudden push on and through my head down. So much so that I felt my knees buckle. How could the pseudo shove make my knees buckle?

I don’t like this change, if it is one at all. I know my seizures, how to manage them how long they last. So do the people around me who know me. When this happened I couldn’t present myself with the familiar confidence that comes from knowing what is happening and the knowledge that I will be safe. For the first time in a while, the people around me were concerned. Some people would tell me to summit to it, reduce my anxiety.

RKIN200.pvw

 

But old habits die hard. I need some semblance of control. It’s that that gives me the confidence that moves me forward.

Has the game changed?

I’ve been thinking a lot recently about the prospect of possibly having the opportunity to be seizure free. My natural indecision has kicked in with full force. The main issue is that I am indecisive. If I can’t decide about what shirt to wear to work then how will I make a life changing decision with conviction? Or is that prospect possible at  all, even if I was a decision legend or master? As opposed to decision (knight)mare!

I am seriously crap at making decisions. Although I do like to defend this part of my personality. It does make a person spontaneous and care free, however, I don’t think that will wash with a brain surgeon. I’ve been told that they are reasonably buy people ;).

As I write this now I am struggling with the idea of going downstairs and making myself some marmite on toast or maybe some fruit… This is ridiculous… Of course I’m going to get toast (there is never a bad time for toast… except in the rain or when swimming).

I help people to come to decisions every day. I give people exactly what I have been given. Options. When they are my options, It’s SO MUCH HARDER. I’m not talking about the toast ;).

What isn’t helping is that I watched the film Awake. If you haven’t seen it, its horrific. I won’t spoil the horrendous experience of watching it for you. Trust me it is truly a poor choice of movie for a person musing on the idea of surgery (shudder icon really should go here).

My mates have obviously showed me the lighter side of my alternating, coin toss, lets call it frantic method of working towards making decisions about the future. They have highlighted that I have indeed changed my mind each time the next pub visit comes along. Knowing them they will open a book on what decision I would make. At this point the odds are pretty good either way!

I would love to share with you how the lads have made light of ALL the possible outcomes of me having brain surgery. But, I really can’t bring myself to do that, mainly because it would (even on world free speech day in the free speech club) be at least frowned upon. :) You get the idea, they however, are absolute legends.

I start another new med next week, which is swell. So that means coming off another one. :S I’ll keep you informed.

Cheers for reading,

Please leave a comment, I will do my very best to get back to you (no excuse really as my phone rings when you do and I can’t turn it off) :)

Thanks Again,

Ant

 

 

 

 

No news isn’t always good news, but sometimes new news is.

Routine

For so long management of epilepsy has been routine. The same medication, the same seizures. No change, which for me is comforting. I have enjoyed the predictability and the control that I have gained and made use of over the years.

It has allowed me to work in a job with responsibilities and to feel valued. To be honest for me this a feeling that, despite the needs that I have ,I am still able to be a person that can contribute. The deal maker in my situation is that medication enables me to have a life at all.

But for some of us this may not always the case, a life without meds becomes an option. Where for most it is not.

Very recently I went to see my Neurologist; who gave me some surprising news. The news was thanks to developments is pathology, my tumour was re examined in the lab and was re-classified. For years I have been living with the fear that the low grade glioma that I thought was sitting in my head would wake up and change everything.

My meeting with my Doctor may have given me a choice that I have never had. The discovered that instead of having a low grade glioma, I do in fact that what is called a DNET. It stands for something long, there are too many syllables for me to spell it out. However, this DNET thing does change things, it may give me options. Options that I was getting used to not having.

I have also been given a new medication as one of the ones I am on can turn your retina blue. But the though that my tumour gave me options made that a secondary after thought. In fact I as actually quite curious about that side effect.

For the second time in my life surgery may be an option.

The first time, I was only 9 years old and I had no choice. This time obviously feels different. I am in control (am I in control?). I have a choice and my choices could change everything, or at least some things.

The prospect of surgery terrifies me. Especially a waking craniotomy (typing this makes me want to vomit, a lot, lost of vomit). The only image that I have, which I see over and over if Hannibal Lechter in Silence of the Lambs, with his victim’s head open… You know the rest. For me, it is basically that. But the possibility of being seizure free and med free is a tempting and almost hypnotic yet sicky prospect.

But it scares me, AED’s are my comfort, my key to an independent life. Can I live without my security blanket? 25 years is a long time (that isn’t an observation ;) ).

The feelings of optimism and the smell of possible success are very familiar to a person with epilepsy.  Optimism is liked directly to disappointment.  Every new med is attached with a hope that this one might just be the one. Every new suggestion of a new medication that had a new mechanism makes you sit up slightly. But it is the same as always. There are no certainties. But oddly even this is comforting in its consistency or inconsistency, however you want to look at it.

It is like going on a blind date or starting a shiny new relationship (to be fair this is an approximate comparison as I can’t say that I have had vast exposure to these types of situations). It is less than an ideal situation however it is an option. Which I suppose makes it a good comparison. Anyway. The first weeks of a new med are the like a period of small talk between two people who really do not know anything about each other, it’s awkward and you don’t want to sound like a stalker. Things could click however things may not. And if it fails, your level of disappointment comes from the amount of yourself that you have invested in it. So these days I don’t invest much, in the meds that is.

As things move on and the meds start to have a positive effect, I like to think of this of a honeymoon period. Everything is rosey!

Side effects start to be a burden after a while, you know, your nails fall off, can’t keep your eyes open for most of the day, you get angry any at ANYTHING.

This is like that time after the honeymoon period when you notice the little things that get under your skin and eventually become unbearable. At this point it may be time to call it a draw…

I am not even at the blind date stage with my new meds, they still have a mystery. I am just left with questions. What will they look like? Will they be so big that I can’t swallow them? Will they be so small that I will drop them over and over until I give up and get another one out of the pack? Will the side effects be more of the same? Will they work?

Oh the wonder. The excitement… yeah… wonder… excitement… meh

I am used to change now, any change I just take in my stride. All the changes have been made in an effort for positive change. I’ll always try a suggested med or treatment. This is due to the fact that I honestly believe that we should never worry in anticipation. Only deal with the things that are in front of you and the things that you can change.

Cheers for reading, please leave a comment. I will endeavour to replay ASAP.

Ant