An Epilepsy Dry Spell

This is a bit of an odd post to write. I normally write blog posts about how something quirky and uniquely epileptic has happened. Or someone has outraged me beyond belief etc. The thing is that this time it isn’t the case. I have a pretty mundane 9 months epilepsy wise. Which is why I have chosen to update my blog and start again. But for me it poses one question. Why have I had a such a good (but not seizure free)period of epilepsy?

I did an investigation into the whos, the whats and the whys- strangely they are similar to epilepsy prevention methods, funny that.

I hold a regular 9-5 job in a business which fully understands epilepsy. They make themselves better by finding out more.

I take my medication regularly, sticking to a 12 hour cycle. I have no idea if this makes a difference for me, but I feel better about it.

I do drink, but not too much. I can share a bottle of wine with my other half and feel as normal as the next person. I supposed that is what it is about. Being and feeling normal and enjoying it.

I don’t get stressed anymore. I only worry about the things that I can control and so do the people around me and my loved ones. In addition to this my life is safe and secure and moving forward happily, so aside from the concerns of life in general, I have one less trigger to worry about.

I also lost weight, and went bald. These made no difference to my epilepsy but I lost a serious amount of hair!! ;)

I still have partial seizures but I manage them one at time. They don’t weigh down on me like they used to. A lot of this has to do with having someone that helps me to pick myself up and move on, this comes in the form of my fiancee Jo. She sees me, and not the seizure.

I consider myself very lucky to have all of these things, and I certainly am not going to count my chickens before they are hatched. As I will never be seizure free, just that managing them seems to be getting a lot easier.

 

Many Thanks,

Anthony

 

Triggers are blindingly obvious… once removed.

I don’t know what it is like for anyone else so I won’t even hazard a guess when it comes to seizures triggers. I can only now speak with some vague confidence about what my own triggers are. However this confidence appears to be short lived as the more I think about it, the more I second guess myself so I better get this typed up pretty sharpish.

I have just come off the back of a three month, yes THREE MONTH seizure free period. I literally forgot that, a) I have epilepsy and b) I am waiting for epilepsy surgery. My short term memory revolves around the Wunderlist app and funnily enough seizures and surgery aren’t on their.

I have never gone this long, seizure free, in my life. Just to give you an idea of how long that is for me, here is a list of things that fit into this period of time.

1) You can give notice on commercial waste removal via a local authority, I know this isn’t the best example but for me its topical and right at the front of my mind.

2) When I worked as a teacher, I could have gone the whole first MARATHON term seizure free, although this is unlikely :S

3)Mercury would be able to complete one whole orbit of the sun.

4) You can make 1/3 of a human baby, at least one stilton and a whole puppy (isn’t that cute).

So after this unusually long epilepsy holiday, I think I can narrow down my triggers. There isn’t anything special in there or weird. It is simply fatigue, stress and of course a tumour.

The odd thing is that, within this three month break is I have managed to move home and completely uproot myself. It has been a stress riddled and tiresome time like no other. Yet this has been interpreted by my brain as far less stressful than anticipated. I have taken this as a win on my part. As a result of this I am holding out for the seizures to come as fall out. If they do, no problem, these problems few months have been pretty good. If they don’t, its a bonus.

The odd thing is that I have experienced considerably less stress and had seizures as a result. There are clearly more factors at work that I just can’t understand and don’t have my head around.

Thanks for reading. Please email me with any questions, I will get back to you :)

Anthony

I failed an appointment but all is not that it seems.

I am a strong advocate if the National Health Service (mainly because it has kept me alive this long), however last weekend my patience was tested to the limit. It was not a one off either. This is the second time something like this has happened.

Wales played Australia on Saturday in what I have come to believe is now just a ceremonial display of the same game of rugby replaying itself over and over again, and we actually pay money to endure this misery. As I walked through the front door, I was greeted with the ever familiar postmark of my local health board. I was actually quite excited as I was waiting for an MRI scan date as part of brain surgery investigations, exciting stuff. So I opened the letter. But all was not was not as it first appeared. Not so exciting stuff.

I did recognise the letter as it is a format that I come across in work. It was a failure to attend letter. This is where I started to smell a rat, mainly because in order to warrant receipt of a letter such as this. I would have needed to have received and appointment on the first place, which I didn’t. I had been waiting for the letter for MONTHS and MONTHS so as you can imagine my surprise when I saw the you are no longer invited to my party, letter it came as quite a shock.

Following my steaming hell rage, I read the letter in its entirety and established that, there was no accountability being taken for the letter. As it wanted me to go back to the Dr that referred me in order to correct their mistake. I thought on this for a moment, and was somewhat unsatisfied. I then thought, maybe I can improve on their procedures… If I made a mess in your house (lets say at a party), how would you feel if I said, yes, in order to fix this you need to get the guy in charge of organising the entertainment to clean it up. As you can imagine, he would not be happy with this, and the home owner would be somewhat bemused by the arrangement.

So I called the Radiography department. Not my Dr (it’s not’s their mess to clean up).

Firstly, I found out that the phone number on the top of the letter was for the WRONG department…. Brilliant, smoke and mirrors. Luckily a helpful person gave me a bundle of numbers to call if I didn’t have any luck. I still have these numbers :).

When I got through to them, they were very helpful. However, something screamed MANAGEMENT FAILURE. The lady I spoke to told me a number of letters had gone missing. These were not acted on, however they did send out the failure to attend letters for those appointments, and push the people who had been waiting months to the bottom of the queue as well as make their figures look swell. This an incredibly cynical statement and may be wildly inaccurate when applied to waiting lists (please excuse my imagination making ideal world statistics, if this is the case). But it is accurate in representing how I felt at the time. The fact remains that the the letters were never sent, and that then becomes the patients worry. As if we haven’t got enough to worry about.

Incidentally, I wanted an appointment so I did’t say any of these things. My appointment was very quickly remade, however I do not like how administrative decisions could drastically impact clinical decisions and timing.

The moral of the story, go route 1. Go back to the place who wrote to you. Try not to let them move you on or back, especially if they made the mistake.

I had my scan last night. Which like always was handled with military precision and world class care. It’s as if the NHS functions despite the horrendously flabby layers that have been put upon it. Well done NHS. :) You still nailed it, but just send letters properly.

Holiday insurance… debacle

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

So with the flights and the hotel booked there is one important thing that I had to remember to do before I could go away. That was to book holiday insurance.

Now I’ve done this before and in the pass this hasn’t been a problem; so why would there be this time?

In fact I would go as far as to say as it was a doddle. An absolute doddle!

For the record my epilepsy is well controlled, I do not lose consciousness, it is caused by a DNET tumour which was removed partially in order not to damage my vital brain function (you know, little things like spacial awareness, moving, looking in the right direction this will turn out to be a crucial detail). I have not been hospitalised since I was 7 years old. I am 31 now.

So I began my search.

Try 1. Confused.com’s pre existing condition insurance search (I have to admit, it is a bit of a mouthful).

The questions covered the basics, what was the nature of my pre existing condition and the details of it. The quotes ranged £1200.00 £1600.00.

This is 10% more than the cost of my holiday. Needless to say I did not walk through door number 1.

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

I found that (after a bit of probing) Insure n Go would not cover me for travel insurance. I went through all their questions. Answering honestly, because I can’t afford not to. When they sent me their quote they had not marked an answer to a question as I had stated. So I called them back. After receiving a quote of £256.00

The question was. Was all of your tumour removed. They only had the choice of yes or no. So in my case I answered; “no, as much was removed as could have been done in a safe manner”. They marked it yes. The last time that I checked, yes was the opposite of no. This was an important detail for me because I wanted cover for a brain tumour.

On speaking to them they told be that if I answered no, then they would not be able to cover epilepsy. To which I replied, “you won’t be covering a lot of people with epilepsy then”. The scary thing was we both knew that this insurance salesman would have been quite happy to send me off on holiday with what was effectively a void policy and meaningless piece of paper. But hey, he would have got his commission and I would have been left responsible for the inaccurate (I am being kind here) questionnaire marking.

To his credit and my persistence they sent it off to the underwriters. No doubt for them to come back with an astronomical quote for a low risk person. The message that they will be trying to tell me with the quote will be, go away! So my search continued.

Try 3. AllClear travel – Full cover £247.00 :) N0 fuss. Seriously it was that easy for me. I filled in the online form and I got a realistic cover for someone who has a brain tumour sat in their head. I was happy with that, very happy in fact.

From my experience of finding travel insurance I am genuinely concerned about the possible number of people who have existing conditions and taken the time to get appropriate cover. Yet they are sold inappropriate coverage simply because a yes or no answer is interpreted in favour of the salesman’s monthly quota. Also there could be a number of people who travel abroad not even knowing that their insurance is inappropriate.So my advice would be ALWAYS re read your quotation questions and how the questions have been answered, even if this means you have to pay a admin fee to get a copy. Without doing this I would not have spotted sneaky Joe’s “mistake”.

Also, the git from one company said “its your choice of you take the policy”. I thought about this as was I was on the phone to him and 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 a choice we certainly do not have one. Oddly the twerp did not have an answer for that. Maybe his computer said no.

On the Fence About Epilepsy

Over the past year I have been jostling back and forth with seemingly life changing epilepsy treatments. Having been offered surgery and new medication and being able to catch a glimpse of what life might have been like seizure free; I finally made a decision. It was easier than I thought it would be. I’m happy how I am. Medicated like a retired popstar, living and managing epilepsy in the way that I have all my life. Life changes and things move on, and sometimes decisions like surgery actually become a selfish choice especially if they are elective yet the risks remain the same, and this wasn’t good enough for me.

All this made me think about how I consider epilepsy as a condition, and dare I say a disability.

Whilst at university, I came across the two models of disability.

You have the social model, which views disability as a life situation which can be lived with, by having society making reasonable adjustments in order to make life less tricky. Because, if you look at it, a person who uses a wheel chair, that person is disabled by the environment that they are in. Simply because it was not build with every type of person’s need in mind.

The Equality Act in the UK was written viewing disability through the eyes of the social model.

Then we have the medical model of disability. Which sees disability as a situation that a person is in, and that it is a situation that aims to be “cured” through medical intervention. It does not define the person, and that person is not less of a person because of the disability. Note that the emphasis is on how medical intervention can change that persons condition. I ask, how long for and to what ends, and from what beginnings? Sometimes, things just aren’t this black and white, but when you need a surgeon this comes in handy.
I have a theory, and please comment on this if you have an opinion on this. I think epilepsy carefully straddles between both the medical model and social model of disability. The reason I think this is epilepsy is a disability as it falls into that category (it is in general, a long term condition), however if I look at myself I aim to use medical intervention to try and cure my various symptoms. By this I mean that I can live with partial seizures but having tonic clonic seizures in my life makes things more complicated. This is medical intervention to stop my seizures (well that has been the plan), however I do make use of societies reasonable adjustments, in my work, when getting around and when accessing the health service.
I feel quite bad about this because I bore people stupid chirping on about disability and equality, yet I aim to rid myself of epilepsy, yet I also use some of societies reasonable adjustments. It’s very much a love hate relationship.

This is the problem, I have a disability yet I am not happy to just turn around and say; stop! this is enough medication, I have enough control to manage the rest.  By this I mean that my seizures have little ill effects on the quality of my life. Apart from the expected palaver.  However I think that day is starting to get nearer. With every visit to the Neurologist I am beginning to think that it might just be time to stop and say about myself that some control is better than none.  I think that I am ( whether I know it or not) trying to get a bit of both worlds. I know that in reality that this is not possible. The longer I spend trying to get away from epilepsy, the closer I seem to get to it. There is no getting away from of it. So why try. Management is good enough for me.

Also, the more I load myself with epilepsy as a “problem”, the less society has to do way of having to deal with it or learning about it.

In conclusion, I genuinely think epilepsy is a disability with a grey area. Social understanding is a difficult thing to generate, but not impossible, with a condition such as epilepsy, in my opinion this is because we don’t really understand it ourselves. If we do not understand it, others who are not in my position defiantly don’t. Also the fact that it is not visible doesn’t really help. I won’t be carrying a sign any time soon though. ;)

Thanks for reading, please feel free to leave a comment I will do my best to get back to you ASAP. Thanks. Ant :)