De Ja Who| Years and Years TV Review

Within the first few minutes of watching Russell T Davies’ (RTD) new drama I felt as though I was experiencing de ja vu.

If I wasn’t an obsessive fan of the RTD Doctor Who era I probably would’ve been very impressed. The show is super well written and brilliantly directed, it displays a horrifically realistic representation of our current and future society but it doesn’t feel very new. In fact, I feel as though this is just RTD recycling previous ideas. The overall premise of the show, the style of the editing and the use of dramatic music significantly mirrors the 11th Episode of Series 4 Turn Left!

I honestly don’t why I was so shocked when I saw Murray Gold’s name in the credits, I mean I full blown exploded. That one name is the reason the whole show felt so familiar. Looking at his resumé it’s clear to see that he has worked with RTD a lot but he’s a phenomenal composer so it could have all sounded a lot different. The brief he received for this was clearly, ‘do what you did in 2009’.

Having both Russel Tovey and Jessica Hynes in the main cast adds to this also, as both played some of the arguably most liked minor characters from the RTD Doctor Who era. In fact they’re the only two non-companions whom the tenth Doctor revisited during his longwinded goodbye, a scene clearly written not only to pay homage to the tenth Doctor himself but also RTD’s time at the show. I honestly wouldn’t be surprised to see David Tennant in the cast list further on in the series.

I understand that writers and directors have a style they like to stick to and a team they like to work with. Overall it is a good show even if it is a bit intense I just feel as though RTD could have done it a bit differently. I will probably continue to watch the show and just notice more and more crossovers as it goes along.

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VNS Update!

At 9.50AM on Tuesday I finally had my appointment with a neurosurgeon to discuss the possibility of Vagnus Nerve Stimulation (VNS). Although hospital appointments are probably one my most familiar situations, in which I normally feel worryingly comfortable, for the past week or so this specific meeting has been making me excessively anxious. One thing about my epilepsy that has always been reasonably certain, is that due to the lack of physical anomalies within my brain, surgery is a non-viable option.

VNS, however, works differently. I made sure not to Google anything about it before the appointment in order to avoid any over-thinking, but from what I generally know, I came to the conclusion that it is basically a seizure-pacemaker. The surgeon agreed that this is a pretty good description. Essentially, a battery is placed in the chest attached to a wire that is wrapped around the Vagnus Nerve in your neck, this nerve is basically the Fedex between your brain and your body. If the device picks up on a sudden increase in your heart-rate, it sends a small electric shock helping to calm down the irregular electrical activity within the brain, consequently reducing the severity of seizures. It can also be triggered by caregivers using a magnet.

Although there is no guarantee that this will work for me, based on the simplicity of the procedure itself in comparison the severity of my current seizures, my parents and I have decided to go ahead and put me on the waiting list.

Since coming to this conclusion, it has become even more evident that we made the right choice. Other than forgetting medication the only other seizure trigger I’ve managed to identify is a significant reduction in stress. I always use my second year at uni as an example, after handing in my final essay for the year, I woke up on the bedroom floor completely unable to speak or move. So it only makes sense that the morning after going to the appointment that’s been stressing me out I have a massive seizure. It’s been a nasty cluster of about ten, during one of which I bit my mouth so hard I’ve actually burst a blood vessel on the inside of my left cheek!

Mentally I’ve recovered quite quickly, I want to get on track with projects I have at the moment but physically I’m still totally drained. I’m hoping that giving myself a few ‘days off’ will mean this is a quick recovery and by the end of this year it will become a much less frequent experience.

 

Morbid Metaphors

My life is definitely moving forward but at an embarrassingly slow pace. It’s a bit like when you stand still on a travelator, only I just don’t  have the motivation to start walking and consequently speed things up. I know roughly where I want to go but it seems I don’t want to get there. It may be a contradictory statement but it’s what I feel.

This is a similar sensation to when I get creative block only it’s not just ideas I’ve run out of. To me it is pretty evident that this sudden drop in drive is due to all the bumps in the road I’ve faced over the last few months and the fact that I’m pretty certain there are many many more ahead. This kind of problem cannot be fixed by roadworks. When I look at this situation logically I can persuade myself it’s a matter of caution and I’m not just totally giving up. But knowing this doesn’t stop it from dragging me down.

The last few weeks there are lot of doors I’ve put my foot in, but also a lot that I’ve walked into (hence the countless scratches and bruises all over my body). The simple fact that I’m writing this entire blog in similes and metaphors is evidence that I’ve still not quite come to terms with just how bad my health has got.

Luckily since writing the first part of this blog I have seen both my Neurologist and Life Coach and am feeling better about my general prognosis. Changes have been made to both my pills and overall perspective yet I still feel a strong sense of ambivalence. I’ve always felt at least partially in control of my condition, despite the opposite being the main symptom, but I now feel completely ignorant. I have no idea where it will go next or how it may affect my future.

Switching medication, particularly after such a short period of time, is always an uncertain process. It is more than likely that things will get worse before they potentially get better. The medication I am now on is one I’ve never heard of before, it is old-fashioned and comes with a lot of warnings. Going through so many changes in such a short period of time is hard for me to grasp and merged with all the other uncertainties my family is currently facing, it makes me very uneasy.

I’d like to say I’m going to try and focus on the positives and keep pushing forward but I’m not sure how true that statement would be. This hasn’t been a great start to the year but we still have two thirds of it to go.

 

 

 

 

Things have to get worse before they get better

The past few months have been excessively tough. I’ve held back from writing because part of me still doesn’t want to admit just how bad things have got.

Over the 17th and 18th of February I had 30 seizures in just as many hours. It hit me hard (as you’d imagine) both physically and mentally. It’s only now, nearly seven weeks on, that I’m finally starting to feel that my life is back on track. I had to put absolutely everything on hold, something I would have resisted a few years ago. However, after having seizures pretty much my whole life I’c learnt that the only way to recover is to simply let yourself do so.

I am now in the process of increasing my new medication and although it finally seems to be doing its job, I’m also experiencing negative side-effects. My general energy levels have drastically reduced and my balance and coordination is completely off. The latter is rather debilitating particularly when you consider my complete lack of spacial awareness. I have a habit of walking into people and walls anyway, being unable to lean to one side without nearly falling over simply makes the prospect of injuring myself far more likely. Being wobbly is by all means better than seizures but I’m still having to adapt. Things as simple as putting on my slippers have become harder and having a cat who like to walk directly under feet is also rather scary (I think I’d kicked in the face at least three times this week).

I still feel that I am in a generally good place but after facing this trauma I’m concerned about my future. I’ve known for about a year that I’ll probably never reach my full potential, particularly in relation to careers. But I’m now concerned about whether I’ll ever have any form of independence. With my health so unstable, living alone just doesn’t sound safe which significantly affects my aim of beginning a pHd, I have to make sure I’m at a university that is easily accessible for both me and my parents/carers.

What I’m feeling the most at the moment is raw frustration, I have so many ideas and so much passion yet I feel as though I’m not really getting anywhere. I know I’m making small steps towards where I want to be but there certainly not big leaps. One massive achievement I’ve made (no idea how) is fixing my body clock after 24 years of not much good sleep. I’m currently getting up around about nine most days of the week.

Hopefully having more hours in my day will speed up my journey to success. I will always argue that it the struggles that give me the determination to continue. Everything I ever achieve will be in order to prove society wrong. I’m slowly getting and super proud!

Well This Sucks!

On the surface my life is really great at the moment. I’ve just got back from a holiday in Amsterdam, next week I’m off to Southampton to visit a post-grad fair and my creativity appears to be at an all time high. Yet below the skin, there’s a massive elephant suffocating me. Now, before you panic about boring repetition I will clarify I am not referring to PIP. Instead I’m talking about my epilepsy.

At the end of last year I visited my Neurologist. My parents and I entered the appointment with a lot we wanted to discuss. The last year or so my seizures have been getting excessively worse, I’d like to say they’re rare but severe, however, at the end of last year I couldn’t even say that. The seizures themself have got much more intense with it taking over half-an-hour for me to fully come around and being unconscious throughout, they’ve also been far less nocturnal. I will say, without being triggered by forgetting or accidentally dropping meds, the first of each cluster still tends to occur whilst I’m asleep (normally around 8am), only the clusters have also worsened meaning they continue throughout the day. Back in November I was having them roughly every two weeks with between three and seven each time.

On a slight side-note, since officially returning home I’ve also had several visits to the GP. It was not an easy transition which I will elaborate on at some point, but it has been confirmed that I have damaged my legs due to repetitive seizure activity. Considering how much this has been affecting my life in the past six months, it’s quite a depressing fact, but I have now been referred to a physio so hopefully I’ll be in better shape soon.

So, back to the original topic. After discussing how I felt about my current meds and other potential options, I left the consultation with a new plan and several new prescriptions. As of today I have officially switched from Tegretol to Lacosamide whilst also having increased the Dizzy Pill. Tegretol was the first Anti-Epileptic Drug I was ever on, so it holds a weird form of sentimentality for me, but like all the other pills I’ve been on, after five-ish years it has stopped working. I was also referred to a Neurosurgeon to discuss Vagus Nerve Stimulation or VNS, I shall explain more about this once I actually have the information.

Since being on this new medication I’ve only had one cluster of seizures. Admittedly it was the worst I’ve had in nearly two years, experiencing nine in less than 24 hours, but only one in eight weeks is still pretty good. The change that I feel has had the biggest impact (mentally) on me is that, for the first time in my life, I was prescribed emergency medication. I now have a repeat prescription of Buccolam which is a controlled drug. Although taking it makes me feel like the cat after we’ve squirted his daily lemon-flavoured meds into his mouth (very angry and full of yucky stuff) it has certainly done its job. It may just be the taste that brings me round but the initial recovery period has drastically shortened with me being able to talk within a few minutes rather than being semi-conscious and only able to wail for over half-an-hour.

Despite this, however, the simple concept of being prescribed emergency meds has hit me hard. When my mum insisted on bringing them along with her on our four day trip to Amsterdam this week I was very upset. It makes me feel ill. It also makes me question the current severity of my condition and just how limiting and dangerous it truly is. Just as I feel I’ve gained control of my life, a massive boulder comes rolling down the road and knocks down all my plans. As much as this has been chipping away at my confidence and self-belief for the past few weeks I’m still in a reasonably positive state. It may have been the trip away that has brought me back down to Earth or even just the power of time. Whatever it was I feel much better than I did a few days ago.

Health wise, I’m not in a good place but it’s not really particularly bad either. Epilepsy comes with a lot of uncertainty and that’s something I don’t cope well with. All I can do is take care of myself and hope that things get better soon.

My Cooking Journey

January last year I went for dinner at my grandfather’s, he asked if I’d ever cooked Aubergine and gave me some tips on recipes he likes to use. In order to later tell him, ‘yes I did cook an aubergine’, after returning to university a week or so later I made my first bolognese. Of course he’d totally forgotten about the discussion by the time I next spoke to him but it lead to one of the best life decisions I think I’ve ever made. From then onwards I cooked myself a pound of mince every Monday night always with Aubergine (one of my now favourite vegetables) and whatever else I’d bought that week. Not only did it add a sense of routine to my life (Monday was cooking day, Wednesday was DocSoc day etc.) but it also triggered my interest in cooking.

When I returned home permanently back in September I wanted to retain some of the stability that this routine had given me whilst also furthering my knowledge, skills and basic understanding of cooking. So every Tuesday night I cook the family dinner.

I started off with recipes I picked up at Weight Watchers or in Waitrose and then moved on to using the Jamie Oliver 5 Ingredients cook book. After making about five meals, some successful and some not so much so, I begun to feel really frustrated. It is described as containing ‘Quick and Easy Food’ yet a lot of the recipes require very specific tools (a shallow casserole dish that goes both on the hob and in the oven) and ingredients (a shoulder of beef with the bone still attached). On top of this he doesn’t consider oil, salt or pepper as one of the five ingredients which constantly annoyed the pedantic side of me.

So last week I bought myself two new cookbooks. The first being Ella Risbridger’s Midnight Chicken: & Other Recipes Worth Living For. I haven’t et used it but it does contain beautiful illustrations and really sweet anecdotes and stories about all the food. The second is Skye McAlpine’s A Table in Venice: Recipes from my home, after searching through Amazon for about an hour, this was the only book I came across with no fewer than three star reviews. It is another stunning book, perfect for placing on a coffee table and again contains some lovely sentimentality. Of course being Venetian food a lot of the main meals are seafood based, which living in a Jewish household is a bit restrictive. On my first flick through, however, I came across a fish recipe which immediately caught my eye and I cooked it tonight along with one of the vegetable dishes from the book. 

Normally I go and buy the ingredients myself, but today I sent a list to my dad. I’m very particular when it comes to measurements etc. but my parents not so much so, despite me stating exactly how much I needed of everything he bought far too little spinach and not realising it had all gone off so I threw it out last week, absolutely no garlic at all. He also had to get a different breed of fish as there wasn’t any sole in the supermarket. None of this really mattered though. What mattered was my clumsiness.

Despite cooking almost weekly for over a year now today I had my first big ‘mess’ up in the kitchen when my frying pan lost balance and half the sauce splashed out across the entire hob. This lead to some panic and I consequently forgot about the chips in the oven and the fish under the foil next to me. I ended up serving an albeit tasty but cold meal with multiple texture flaws and proportion errors. In hindsight this sounds much less of a big deal than it felt at the time, I’ve definitely learnt from the experience and will certainly be trying the recipes and similar ones again soon. For me it’s these kind of mistakes that tend to hit me quite hard and often knock my confidence.

Coming from a Jewish, Italian family cooking is an essential part of the culture I’ve grown up in. Whether it’s a traditional Friday night dinner or just a simple risotto I want to be able to deliver to my family what mine have given to me. I’m so far enjoying my journey into the world of making food and hope to continue learning and improving every week.

No-deal, No Pills!

Two topics I’ve been wanting to write about for a while are my epilepsy and Brexit. However, I didn’t think I’d be writing about them in the same blog.


 

Today The Guardian published a letter that has been signed by epilepsy specialists, researchers and fundraisers. The headline reads:

No-deal Brexit poses a potentially fatal risk to those with epilepsy.

You see a large amount of medication prescribed in the UK is actually manufactured elsewhere within the EU, and even those that are created within our own country are at risk, as a large proportion of the active ingredients needed to produce these life-saving drugs are imported from as far away as India and the Far East. This means free movement across the EU and into the UK is essential when it comes to sustaining the supply of medications needed to keep people alive.

I’m currently going through a medication transition, in less than four weeks I will be being kept alive solely by a drug manufactured in Belgium! What concerns me even more about these tablets in particular, is that they are not commonly used and neither is my other main Anti-Epileptic Drug (AED). I have tried pretty much every popular AED out there and am now relying on two medications that are hard to get even before Brexit has happened, very few pharmacies actually stock either of them so they always need to be ordered in. Surely the government would prioritise commonly used medicines over ones like mine. Meaning if there isn’t a deal in place on 29th March, I may lose access to my medication and as depressing as it is to write, without it I’d probably be dead within 24 hours.

The government has put plans in place in case of a No-deal Brexit, however, those that have signed this letter are still concerned about the situation and fear the government’s amendments could increase the risk of avoidable deaths of people with epilepsy. There are already 21 epilepsy-related deaths each week, many in the young and many avoidable, we need to do everything we can to prevent the number from rising any quicker than it already is.

I am concentrating on AEDs and Epilepsy as that is where my concern lies, but many other ongoing conditions will be effected equally, even antibiotics may be hit. This is just one problem in an ocean of Brexit related concerns but it needs to be fixed soon!

To read the full letter click here.