It’s due to nights like tonight that writing is such an important tool for me. As I sit on my bed, still fully clothed at 00:53, I have no intention of going to bed and falling asleep. There’s too much on my mind. Too much weighing me down that I just don’t want to have to face again tomorrow or even in my dreams. So I’m writing it out instead, arguably in a slightly cryptic manner.
You see right now I’m low again. I’m pretty sure this’ll be a reasonably short battle but the issues that have triggered it have existed for over 12 years. In two out of my last three blogs I’ve discussed the leaps and bounds I’ve made recently. How much everything has improved and how far I’ve come. But there are some things that have never changed, never improved, never got better. They have done for a short time but then time moved on and I just didn’t.
This time last year I was expecting to collapse, I knew I’d be questioning my progress and feeling alone. A few weeks ago I honestly didn’t expect to feel the same thing this year. I know that right now, more than ever before, the entire world is lonely. I understand I am by no means alone in this. But not everyone has felt it for 25 years and most know that once this is all over and they return to normality, those feelings will fade. If I’m basing my opinions on experience, I’m pretty sure I’ll always feel this way.
Lockdown really didn’t take much of a toll on me (though my family may disagree) because the situation just mimicked my normal life. I spent so much of 2019 just sitting on the couch with the cat watching quiz shows, I thought 2020 would be different. But as soon as I was able to press the play button again, the rest of the world paused.
Lying here and just typing out all my feelings with zero structure makes me feel like I’ve taken a u-turn. This is what I did when I was stuck in school being traumatised without support. I actually found the link to my first ever blog site a few days ago, so I took break from typing and decided to look at it. It does bring me some solace. I’m not in the same position I was in nine years ago, but a new one that’s just as hard to deal with. And all that was holding me back then still exists in my life to some extent.
I still have epilepsy and seizures. I always will. I’m still autistic and have very few friends. I still feel like an outsider in every single situation. I still can’t empathise or type without having to correct every other word. I’m still me.
Right now I’m just fed up. I’ve had enough of waiting for opportunities to come along. Enough of wondering when things will change. I’m bored of relying on meds and consequently spending half-an-hour on sorting them out each week. I’m fed up with relying on others, not having full control over my life and not feeling like I’m meeting expectations and making my family proud. I’ve had enough of feeling stuck. I just wish someone could come and tap my shoulder in order to get me out of the mud.
I really don’t want to feel this way when I know I’m in a better position than so many others. I know I need to put myself out there, ask for opportunities in order to get them. But the anxiety I feel just asking my few friends if they want to meet up is enough to deter from ever leaving this house. Why should I put myself out there and set myself up for rejection when I can be at home watching quiz shows with the cat?
Quoting punk-pop band Free Throw again:
A part of me knows that there’s no fight left In the shell of a person I became this year
If you look at my current catalogue of posts, you’ll notice there is a five week gap between 28th July and 3rd September of 2019 when I didn’t write at all. So much happened in those five weeks, so much I wonder if I’ve ever fully processed. That summer was both the best and the worst of my life. In fact the whole of 2019 hit me so hard and so fast that I still have a giant, metaphorical dent in my side. I’m not sure if I’ll ever fully recover from it.
I’m not who I was 24 months ago. In some ways I’m a far better version of me. But in others I’m seriously damaged. Over analysing and typing out thoughts just can’t fix all of me. So instead 66 minutes after I started typing, I’m going to go to bed. I won’t sleep well because I never do. But hopefully, as Captain Tom always says, ‘tomorrow will be a better day’.
EDIT: Well, 12 hours on from when I first finished writing this post, I can confirm that. despite not going to sleep until almost 4:30 am, I have woken up in a much better headspace. Whether typing this all out last night contributed to that or not I’ll never really know but I am definitely ready to face this next day.
These past six months have been undoubtedly difficult for everyone, we are facing unprecedented times after all. And I honestly feel that during this time I have been somewhat neglected. I’ve felt forgotten and invisible. To put these feelings into context, here’s a rundown of what I’ve been dealing with the past few months…
The consultant (Some time at the end of July)
Because of COVID-19 face-to-face appointments have become a thing of fantasy. And although I had a phone appointment with my consultant at the end of July, I’ve been left with a lot of anxiety and a lack of closure. I fully understand the reasons behind the notions currently in place but not being able to sit down with my consultant, look her in the eye and discuss my concerns and issues is hard. A lot has changed with my epilepsy these past few months. My VNS device is becoming more and more efficient. I finally have control over my seizures, so why am I on multiple anti-epileptic drugs? How can I sort out my sleep? Is my stupidly low blood-pressure something we should look further into? Is it really ok to be on intoxicating medication?
During this ‘appointment’ with my consultant we agreed to make some changes to my meds. Despite my blood-pressure being low, I’m on beta-blockers to help control my migraines. It was agreed that the medication I’m on has run its course and I should switch to a different but similar drug. She also suggested I split the dose of what I call my ‘dizzy pill’ in order to no longer get so dizzy when I take it.
It’s taken six weeks and a hellish amount of stress for me to even get those prescriptions…
The GP (First week of August)
As I discussed in my birthday blog, at the start of last month I was really down. Like full blown severely depressed. And it took six separate phone calls before I spoke to a doctor.
When a patient with known depression, who hasn’t been seen in six months, phones a medical practice saying they are extremely low, they should be given an appointment immediately. Instead I was instructed to fill out an online e-consultation form. And five questions into the mental health questionnaire, a bright red banner appeared instructing me to call 111.
111 sent a message through to my surgery and suggested I call first thing in the morning to make sure I got an appointment. The following day I made FOUR more phone calls before eventually speaking to an actual doctor.
He increased my anti-depressants and I filed an official complaint based on how the overall situation was handled. The surgery since has admitted they made an error but the fact is the systems currently in place do not serve all needs. I’m autistic, it says so on my file. As soon as I made that initial call to my practice I should have been given an appointment. Instead, I was turned away.
The GP II (Last Week)
So, August hits and I begin to feel much better. The med increase has clearly helped and all is good. Until I need to order more of my new, smaller anti-depressant. For context I went from taking 10mg to 15mg, so now take one 10mg tablet and one 5mg tablet. However, the prescription for the 5mg tablets that I was given after my eventual phone appointment wasn’t on repeat, meaning yet another call to directly request the pills.
I was then told by the on-call doctor that I was due a medication review and advised not to order any of my pills until after this. We arranged it for the day before I ran out of meds to make sure I didn’t run out of anything. During this chat it was also confirmed the med changes agreed between my consultant and me (remember the start of this long story back in July) had not been passed on to the GP at all.
Seeing as I wanted an appointment with the nurse anyway, the doctor decided to just book me in with her and let her do the review. So I sent a nag via email to my consultant, asking that she send the med changes through to the GP asap and waited to receive my call.
The GP III (Yesterday)
So appointment day came along. I had two doses of my main AED (Phenytoin) left. The nurse then announced she couldn’t do my review as she doesn’t know about all of my meds and I haven’t had my Phenytoin blood-test recently enough. The last time I asked the surgery to refer me for said blood-test I was rudely told this wasn’t possible. How am I meant to keep track of when I need to get it done when there’s so much inconsistency and my memory has been destroyed by 22 years of medication?
We arranged a face-to-face appointment to discuss some things and get the blood test done next week and I explained I had no meds. She said she’d talk to the on-call GP after lunch and get her to text me about my meds.
I waited. I got anxious. I listened to BoJo babbling on about COVID. I panicked.
I knew I needed to talk to someone who actually knew what they were talking about soon or I was going to totally lose it. So, accompanied by my dad, I got in the car and headed up the road to the surgery, emotions blazing and self-control fading. I called them on the way and the initial issue of me running out of meds was sorted but I still needed more. I needed proof that someone was aware of my med changes and something was going to happen soon before COVID becomes more intense again. So we headed inside.
Despite there being a protective barrier around the entire front desk, the receptionist insisted on speaking through a dodgy coms system. She confirmed the ‘letter’ had been received and the doctor would look over it tomorrow. When I asked if I would get a call after, she asked ‘why?’.
I mean isn’t it obvious. I want confirmation. I need reassurance.
Anyway, we got home and sure enough I got a call saying the doctor had already looked over it and sent the prescriptions through to the pharmacy. All sorted, or at least you’d think it was.
At about 5:30pm I walked up the road to the pharmacy to collect all my meds. As the prescription had only just come in there was a wait. Fair enough. But when I returned from my detour visit to Waitrose, I was greeted with the news that they didn’t have Phenytoin in stock. I only had two doses left.
The pharmacist did what he could, getting me as many pills as possible and made sure to write a note in regards for what they still owe me (multiple pills were not in stock). He said he was surprised as I normally give them plenty of time. And I do. I had a such a hard time getting pills last summer (a story I’ve never actually fully written up) that I always make sure to order 2-3 weeks in advance. But I was advised against this by the GP last week. I was given false information and consequently an extreme amount of stress.
The reality is ongoing conditions don’t pause or disappear just because there is a global pandemic, if anything they become more significant. And I just don’t understand why no-one’s been ‘keeping an eye one me’. Increased suicide rates have been (not proven) reported in regards to multiple age groups. The affects COVID may have on one’s mental health has been discussed continuously throughout this time. And yet I was left without any sign that anyone was willing to help me.
What happened to the 750,000 NHS Volunteer Responders? Why aren’t they contacting ‘vulnerable’ people in their areas? What happened to our National Health SERVICE?
Now I don’t want to disregard or disrespect the NHS in any way. It is an amazing system that I am beyond grateful to have access to. I understand things have been beyond difficult. The whole world has been at its limits and the NHS especially. But COVID rates begun dropping months ago. Where’s the follow up? I last saw my GP about my mental health in January, they’re meant to check up with you frequently!
Something needs to change. If it doesn’t hundreds of others like myself are going to start falling through the expanding cracks. We all know COVID is back on the rise. Appointments are just going to get tougher again. So alternative forms of support need to be in place. I need to know that if I feel low, or the new meds have a negative effect, I can get help.
It shouldn’t take six phone calls to get help!
I’ll repeat ongoing conditions don’t pause or disappear. So if you know anyone dealing with a long term health problem. Reach out to them. Ask how they are. This time is hard enough without having to deal with an ongoing condition alone.
I’m currently working on rebranding and updating my site. As part of this process I decided to finally categorise all the blogs currently on here. Of course some of them are over a year old, so I read over them to establish just which category/ies they best fit into. It really is mad looking back and realising just how much has genuinely changed.
I mean this time last year I thought I was mentally in a good place. Then I collapsed into an abyss of depression before coming out of it and finally knowing what ‘good’ actually feels like. This time last year I thought my seizures were well controlled. Then I got VNS, fiddled with my meds and the device settings and realised what control really is.
Right now I am just so grateful to be as well as I am. I won’t deny I’ve been feeling wobbly these past few days. Anxious about an array of little issues and not quite sure how to categorise them. When I can’t sieve through my stress, I can’t over analyse the situation in order to fix the problem. But I have enough going on right now to distract myself just enough to keep on pushing forward.
As autumn blooms into its full, it’s close to one year since I had my VNS surgery. And although I’ll discuss that in greater detail nearer the time, that device really is at the core of everything that’s improved during this past year. Just last week I woke up with a bitten lip and sore limbs. I checked my phone to see whether my watch had picked up on anything. Sure enough my heart rate had spiked at about 8am. My dad later confirmed that about that time he’d seen me coccooned in my duvet. For me those small things, added together, were enough to confirm a potentially ‘major’ seizure had occurred and my little buzzer had successfully prevented it from escalating. This device is working!
Even if I am petrified of COVID, dating, living with excruciating pain and not getting a job, knowing I genuinely have control over my seizures is enough to give me that little spark of hope that I need to keep on going. And it is through this blog, and soon this site, that I intend to truly push forward.
I am scared that this sense of uncertainty and anxiety I’m feeling will continue to increase. But as the awesome pop punk band Free Throw said,
I might feel fixed, but I still need maintenance
I can feel new and still need repairs
When I feel like shit, and I feel complacent
Can I be sure that it was really fixed?
I will always have. mental health issues, I will always have seizures. But as long as I continue with my personal maintenance, i can survive. As I mentioned in my previous post, I am excited fr this coming year. I’m confident that good things are still to come, even if I do need to repair myself along the way.
As of 23:02 tonight I will have officially been on this planet for 25 years! Becoming a quarter of a century old intimidates me, I’m overwhelmed and terrified and probably for the first time in my life I don’t really want to age up.
Turning 25 is scary for both practical and emotional reasons. It means I only have one more year to work as a Young Rep for Young Epilepsy, as once you hit 26 you’re no longer considered a YOUNG adult but rather just an adult. I don’t feel like I’m anywhere near there yet and I’m certainly not meeting any of the societal expectations that come with that title. The older I get the further I seem to be moving away from the standards I’ve set myself based on what our world says is correct. And it’s immensely tough, especially when I see my friends and family thriving in the ways I feel I should be.
However, if there’s one thing I’ve learnt as a 24 year old, it’s that life is not something to take for granted and birthdays just re-emphasise that. When I look back over this past year, so much yet so little has happened. The reality is I’ve spent most of it in and out of severe depression and on the surface I’ve made very little life progression. But as I write this in a slightly better head space, I’m feeling that perhaps 24 was just a foundation year, building up to 25.
Two months in to 24 I became a cyborg and begun to regain control of my seizures, the one thing that had held me back throughout 23. I realised exactly where I wanted to go career wise and how hard it would be to get there. I started working as a Young Rep, something which has been a catalyst in helping me regain my confidence. I built up the courage to join my local gaming group, consequently finding an amazing outlet and group of friends. And I even quit smoking.
Each of these things are fundamental to my progression; mentally, physically, socially and everything in between. This past year has been pretty damn rubbish, there’s no polite way to put it. But just as I found a sense of clarity and relativity shortly after my last birthday, I’m entering this new year of life with a sense of positivity. I can honestly say that for the first time in over 18 months I am feeling good and not just ok. I’m still being cautious, every time I finally seem to be on top of things something seems to knock me completely off balance and it’s this that initially turned me into the pessimist I am today. But if Arsenal can turn it around and finish the season with a trophy then so can I.
Being so depressed these past few weeks has been tough, as I’m able to see just how far I’ve come, just how good things are but a chemical imbalance in my brain means I can’t feel that. It sucks even more when I bare in mind the fact that no matter how many times I come to terms with my condition and accept my situation, it’ll never change. I’ll always be autistic, I’ll always have epilepsy and every decision I ever make will be at least partially determined by that. The reality is, life is not an even playing field and I got dealt a really bad hand. But I really do plan on taking life’s lemons and turning them into the world’s best lemonade (even if I can’t drink it due to acid reflux).
I know things won’t stay sunny and life will continue to be hard but, putting my actual age aside, I’m looking forward to this next year. I like to believe in some form of fate, the idea that we each have set destinations to reach but the journey we take to get there is up to us and I really do feel as though my next stop is just around the corner.
I’ve now had my VNS implant for over nine months, that’s the same amount of time that it takes for a baby to grow in its mother’s womb. And as much I’d love to say VNS has created a whole new life for me, it’s not quite that simple.
The five months since I last wrote an update have been pretty crazy. At the end of April until the middle of May I went 4 weeks and 6 days without a single seizure. It’s the longest I have been seizure free in probably almost ten years and for the first time in my life the idea of not having seizures didn’t petrify me. During that time something seemed to click, I felt like I had come to terms with my condition and was ready to face whichever direction it took me in next. Unfortunately, a couple of weeks ago things begun to get worse again.
I had a cluster of three seizures and after the third experienced really bad Todd’s Paralysis, barely able to talk for over an hour. Due to the fact that we’d been experiencing stress in our family, on top of the pandemic that’s currently running havoc across the world, I assumed this was just a blip but my mum contacted my epilepsy nurse nonetheless.
I was supposed to see my nurse back in May but due to COVID the appointment was initially postponed until the end of August. Luckily we were able to get an appointment to see her last week. The thing with VNS is, it cannot be monitored or altered by anyone other than the epilepsy nurse (and her magic wand). For me, not being able to obtain any data reduces that sense of control that VNS should be giving me, so having to cancel that original appointment really stressed me out and left me feeling frustrated.
I explained the three different modes of VNS in my previous update, so if you’re not aware of what they are go check it out here before reading on.
At my previous appointment the auto-stim was triggering on an average of 20 times a day, one of the changes we made then was increasing it’s sensitivity during the day and it is now triggering on an average of 42 times a day. This is good as it means it’s doing a lot of work, unfortunately a lot of the time it’s picking up false negatives and I’ve been finding that the device goes a bit wild if I’m out walking and talking, causing my throat to dry up and making me feel like I can’t breathe.
The auto-stim activity generally seems to peak at about midday and 9pm. It makes sense that it’ll perk up in the early afternoon as that’s when I tend to do so too but I’m rarely doing anything other than sitting in bed on my laptop at 9pm. I also noticed that it seemed to almost go to sleep at 3am, the time when I most frequently begin to have seizures, so weighing up all the data we decided to increase the night-time settings from 12am-9am to 9pm-10am, as well as increasing the strength of normal mode during the night and equalling out the auto-stim sensitivity levels.
It took a few days for me to get used to these changes, any increase in power is always painful at first but I definitely seemed to tolerate it a lot quicker than the original increase at the start of the year.
Since then I have had one more nasty seizure, my parents are assuming it’s due to my body readjusting to the device as I experienced a small increase the last time we altered things too.
As my last seizure was only one and not a cluster I got up much quicker and could feel that the Todd’s Paralysis was also messing with my left leg, I couldn’t put any weight on it and actually ended up falling, making a very loud bang, in the evening. My left leg is already a bit dodgy, as due to hyper-mobility I have a slightly twisted hip, so this resurge in Todd’s Paralysis is concerning.
One of the other things I missed out on due to COVID was my blood test that I’m meant to get done every three months. My main AED is called Phenytoin, it’s one of the oldest and most efficient anti-epileptic drugs out there but if the levels get too high in your blood in can cause severe toxicity and make you very ill, so I get a blood test frequently. My GP refused to give me a blood test form, due to the fact that there seems to be unofficial rule to only hire rude people as receptionists and also COVID, but my consultant booked me in for one at her hospital. The plan is that if my levels are not elevated, we can discuss increasing my phenytoin dose to battle the recent increase in seizures.
I do find this sudden increase frustrating as I was hoping to reduce and even wean myself off of my second AED by the end of the year, I hope that if we increase the phenytoin dose I’ll be able to get my seizures under control and at least partially combat the Todd’s Paralysis too. Right now that is my priority and I just hope my amazing consultant has some ideas (I’m due to see her at the start of next month).
I know that this has been a very long blog, discussing a lot that is on my mind right now but I’ve received several comments on my previous VNS updates so feel it is important to keep writing about everything, not just for myself but others as well. Despite all the ups and downs and the general chaos currently wreaking through the world, I’m still maintaining a reasonably positive outlook. The simple fact is that I going nearly five weeks without a seizure, outweighs the negativity of my recent increase, it seems what ever clicked back in April has remained in place.
As my conclusion I want to say that I feel part of that perspective change is down to Young Epilepsy. I’ve worked with multiple charities in the past but no other organisation has ever seemed so certain of what it is that they need to do. Joining the Young Reps group has given me a new focus, an outlet and a group of other young people riding in the same rocky boat as me, always there if I need some empathetic (and not just sympathetic) support. I really admire all the members of staff I have worked with so far and can’t wait to keep helping them move forward and up.
Last Wednesday morning, whilst staying at my grandma’s, I had two seizures. And although they left me feeling sore and frustrated for the first time in a long while they didn’t leave me feeling hopeless.
You see, four weeks ago I had my first follow up appointment with my Epilepsy Nurse since we switched on my VNS device 20 weeks ago today. She was excited and impressed by the difference it has already made to my life, especially considering that the benefits of VNS are accumulative, increasing over time. We discussed how the size of my clusters has reduced drastically and so too has my recovery time. However, my nurse concluded that improvements could still be made as my seizure pattern hadn’t changed (still occurring every two to three weeks). I was aware that VNS devices can be adapted before I had my surgery but even my very tech-savvy mind was completely and utterly blown by the extent to which it can be customised to suit each patient individually.
VNS has three modes:
Normal- When the device delivers the lowest level signal every five minutes for 30 seconds (this is constant).
Auto-Stim- When it recognises a rapid increase in heart rate so automatically sends a medium level signal for 30 seconds.
Magnet Mode- When I or someone else swipes a strong magnet (provided with the device) across my chest, triggering the strongest level signal for 60 seconds.
Like most humans I’m not aware of my own heart rate, so wasn’t sure if the Auto-Stim had been doing anything at all. But, via the magic wand, my nurse was able to show me that it has in fact been triggering an average of 20 times a day, potentially preventing just as many seizures. These stimulations peak just before I go to bed and just before I wake up, which isn’t surprising when you consider that most of my life my seizures have been mainly nocturnal. So after some deliberation, we decided that rather than increasing the overall power of the device, altering the way it works at night made the most sense for me. Between Midnight and 9am Normal Mode now switches on every three minutes instead of five and the Auto-Stim is 10% more sensitive.
Although it took a few days to get used to these changes, I felt a difference almost immediately. I know this is probably partially the placebo effect, but for the first time in my life I begun sleeping all the way through the night and the two seizures I had last Wednesday was the first cluster I’ve had in nearly five weeks!
I won’t deny that this past weekend I’ve been very low, probably the most depressed I’ve been in months. But every thick grey cloud I felt looming over my head had a thin, glimmering, silver-lining. Because I can still see the prospect of one day being seizure free (an idea that is terrifying). This time last year I was barely going a week without at least 10 seizures, now I’m going over a month and only having two! For the first time in years there is genuine hope and I feel confident enough to start taking steps forward with my life.
I will never be ‘cured’ of epilepsy. It’s a significantly large part of who I am and I am super proud to say that. But I now know there is chance it won’t forever hold me back. Life will never stop being tough, but thanks to a tiny piece of phenomenal medical technology it’s beginning to look a little bit easier and the future looks a whole lot brighter.