Epilepsy and jobs??

I’m in a bit of a predicament.

Having been teaching for around ten years, I recently decided to leave this career. There is one main reason I’ve left teaching. Epilepsy.

Teaching involves many enjoyable opportunities but it has become more of a box ticking role and the focus unfortunately has moved away from the pupils themselves and more about organising files and ensuring things look in place for when inspectors arrive.  Something, I’m not willing to continue with.

Above this, my health isn’t quite in sync with teaching. Teaching requires more a ‘performance’ role. I have found standing in front of a set of pupils 6 times a day isn’t actually appropriate for someone who, at times, experiences frequent absences or petit mals.

So, this is my situation. I’m shortly out of a form of income. Going to the benefits department isn’t an option I’m willing to take.

Perhaps, it is now time to ask other people with epilepsy – what jobs do you do?

This would help me greatly in considering which career path I’m willing to consider next time I apply for a job.  Message me if you could?

Thanks peop’s.

Peace Out, NP.

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Square peg in a round hole – medical professionals.

If you have epilepsy, can I ask you how many of us (epileptics) end up in this situation?

  1. You start a new medication
  2. The medication works well
  3. The medication side effects begin
  4. Your talk to your specialist, they advise you to see your local doctor
  5. You talk to your doctor, they advise you to see your neurologist.

If effect you’re playing a ping pong match with medical professionals.  The outcome during this is:

  • Zero help with the side effects
  • Zero medical assistance
  • No one to provide quality advice with my situation

I’ve been in this situation for 4 month.

Thanks,

NP

Effects of epilepsy on the body – a visual representation.

Sometimes we look at the world from a very personal perspective, we are only human after all.  I’ve experience 10 years of epilepsy, naturally my concentration has tended to remain about the effects it has on my body and how I can move forward with my life.  Following a Tonic Clonic seizure I tend to feel confused and my heart rate is incredibly high, however after looking at this website on health line (http://www.healthline.com/health/epilepsy/effects-on-body) I started to remember how some of these symptoms from previous seizures, the website made me appreciate how different individuals with epilepsy are.

This is a website for individuals who require help with understanding how epilepsy may effect the human body.  It covers up to 14 different effects through an interactive visual display.

I would advise you to take a look at this and share it with people who wish to learn more about how epilepsy works.

http://www.healthline.com/health/epilepsy/effects-on-body

Peace out, NP.

What we understand during seizures.

When driving along a road my girlfriend saw three people standing around a man having a seizure on the floor.  She parked close and immediately noticed that the same three people were still staring at someone who clearly required some medical help.  Someone within the building had called an Ambulance, however most people were still looking and not assisting.

She immediately helped this man by talking to him calmly and ensuring his head was safe with a soft coat, it was pouring down with rain at the time.  She’d noticed that people around him were talking loudly discussing about him, then she asked them to “talk directly to him, telling him what’s happening, because he can hear what we’re saying”.  When the man stopped convulsing he made two attempts to stand up and walk away, my girlfriend kept him calm by talking him out of walking away.  Unfortunately he was unaware that he had some external bleeding from his head.  Again, following 5 minutes more of talking from my girlfriend he settled and became relaxed, she was making calm comments like “my partner has epilepsy too, I can help you” and “help is on the way”.

When back at home she told me she’d made one very important observation:

  • The man had actually heard what people were saying around him, even during times when his seizure was occurring.

This happens with my own seizures too.  It’s very easy to assume someone who has an apparent lack of consciousness can’t understand what’s happening.  But, in fact some epileptic’s are aware and conscious in different ways, so in a nutshell they do understand.

During a seizure it’s safer to make the assumption the person knows what is happening, we understand plenty:During a fit

Peace out, NP

Travel and epilepsy.

I remember, about ten years back, I used to have a huge amount of friends.  I’d hop in the car and travel over to my mates house and have some beers, a good old laugh about silly old boy stuff, sleep over and then drive back in the morning after some breakfast.

Now, travel gets in the way.  Because I can’t drive or drink alcohol. So, I call up, text or leave a message with friends and I’m put off as the thought of ‘travelling’ gets in the way.  My epilepsy has settled very well at the moment, but if I go on a train anywhere or travel by car about one to two days later epilepsy comes knocking at the door.  However, if I stay at home and remain settled, no epilepsy.

My friends.  Many have their old young children now and aren’t able to travel long distances, some would just prefer me to travel to London to say hello.  Either way, those words of ‘would you mind coming here by train though??’ tend to arrive in conversation very regularly.  But, if I were to mention ‘please travel this way’ it’s a little too far.  This has resulted in losing many friends over the years.

It is a bit of a joke really.  I would have preferred more mates during the toughest period of my life, instead I come face to face with more doctors and nurses instead.

I’m okay though, I’ve got a good girlfriend, but there are times when she’s confused by me and my medication, and I’m all too aware that my epilepsy isn’t the easiest thing to help with.

I hope you’re all okay with your travel situations, maybe next time I’ll live in London.

Peace out, NP.

Bring back the old fashioned doctors!

It’s been a long while since I have blogged.  But a few situations kind of give you a kick up the ass to get you blogging again.  Unfortunately, I’ve had a few nonsense quarrels with some doctors and neurologists which have provided me with the drive to get typing again.

In January I went to see my local doctor and ask them for some very specific help.  I broke my conversation with my doctor into precise parts so I was able to come out with some precise answers.

  • I eat very well, my gluten-free diet helps my epilepsy.
  • I have some new morning seizures, my face drops it’s muscle tone and I feel like it’s a stroke.
  • I would like to see a new neurologist, I’m not responding to any prescribed medications and their side-effects do have a terrible consequence should I change them or increase the dose.

In my view this was a fairly decent enough reason to arrange a quick appointment with a neurologist.  I was surprised to see that my doctor hadn’t been able to arrange an appointment until May.  So, in the meantime I arranged a private consultation with a neurologist to help with my continuing situation, again expressing my interest in more ‘holistic approaches’ and not another trip down the pharmaceutical route as medications do not work for me.

Following the private consultation I have received another letter in the post suggesting that perhaps I should try two other medications!  I do kind of remember telling this consultant that I had no interest in other medications, yet these were the two he’d suggested:

  • Fycompa
  • Zebinix

It does strike me a very disturbing, also incredibly patronising, that some doctors or neurologists simply refuse to listen to our individual requests.  It seems that being a neurologist and advising individuals with epilepsy is a fairly simple process.  It follows a very simple route of 1. See patient and work out their type of epilepsy 2. Give some medication and hope that’ll work 3. If it doesn’t work come back and try this type of medication 4. If that doesn’t work try this type of medication etc. etc.

So, back to Fycompa and Zebinix.  The side effects of both of these suggested medications are incredibly worrying.  I’ll leave the research to the reader should you wish to learn more about these two forms of AED, however it won’t take you long to find the words ‘SERIOUS PSYCHIATRIC AND BEHAVIORAL REACTIONS’ relating to one of them.  I’m just so grateful I have a girlfriend who’s able to sit by my side and consider what side effects these medications may have before I try these pills.

Why can’t some professionals take more time to consider a patient’s lifestyle?  I even heard from a recent doctor these exact words “Diet has nothing to do with epilepsy, changing it won’t help”….Come again!!? So following this sound advice I could go out into the world drink aspartame  or sugar loaded drinks and eat burgers chips and avoid all vegetables for the rest of my life and hope for the best?! It doesn’t take a neurologist or doctor to work out that this may cause some negative consequences to the average epileptic.  Worrying to think that this individual has no idea what an impact her words could have.

What I’d like to see again is the old fashioned doctor, the one’s that my mother and father talk of all the time.  They provide more time to listen and consider your actual lifestyle, time to consider why you don’t want to take medications, time to consider why you wish to follow the holistic route before anything else, time to talk and speak through your actual situation, not just sit opposite you and make judgements and throw a needle into the haystack when fixing a very delicate situation.

They do exist, by this I mean the ‘old fashioned doctors’ are out there.  I spoke with a few recently. During an unfortunate virus I’d contracted in March I spoke with a lovely German doctor who provided me with 30 minutes of her time.  I’ve also been visiting a Chinese herbalist, who has a very caring nature and great ear too.  This only suggests to me that the English doctors are under so much time pressure that they’re not able to provide honest requests.  The western approach to dealing with patients is very focused on individual body parts and ‘pill for a symptom’, if we were allowed more time with our doctors perhaps some discussions would also be allowed for life styles and how we could avoid getting ill in the first place.

Perhaps it would great to see a neurologist to act in this fashion too.  Then they would be able to have time to focus on my lifestyle and health in entirety.  Should this actually happen they may notice that a focus on stopping seizures isn’t the only consideration.  For a while now I have found it preferable to have epileptic seizures and function as normally as possible for the remainder of the day instead of having less seizures alongside incredibly negative zombie like side effects.

As epileptic patients we wish to be heard as people, being another statistic to support a pharmaceutical company’s progress isn’t in our best interest.