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.
Right now one of my main triggers for social anxiety is having to constantly answer the question, ‘so what are you doing at the moment?’. My automatic response is normally ‘not much’ but it seems this is insufficient for the majority of inquisitors. Even neuro-typicals can’t grasp the hint that I’m responding briefly because I don’t want to discuss it, so they tend to follow up with something along the lines of, ‘so what are you planning on doing in the future?’.
I feel as though I’ve been asked these questions an awful lot in the past few weeks and it is becoming painstakingly frustrating having to constantly explain my PhD ideas to people, who don’t have any knowledge of my industry so don’t understand a word of what I’m saying. It’s even more frustrating to then having to explain why I’m not currently doing a doctorate and probably won’t be for quite a while.
You see, the long answer to the initial question would be that, after being forced into a year of hiatus due to ill health, I’m bit by bit trying to get my life back on track. Working out where I want to go and how best to get there without over-exerting myself physically or emotionally. I’m rebuilding the confidence I have not just in my health but in my abilities as well, persuading myself that responding to opportunities is better than ignoring them due to my overbearing fear of rejection. Each day I wake up, I get dressed and if I’m lucky I leave the house. If not I do a bit of drawing, animating or knitting and an awful lot of overthinking.
The truth of the matter is I’m doing a lot, but on paper it doesn’t seem that way. For people who aren’t aware of my medical history and the fact that I spent most of 2019 fearing for my life, it’s hard to understand why 18 months after graduating I still don’t have a job and I’m not actively looking for one.
Although most people ask the question because they’re either genuinely interested or just want to start a conversation, for me it is painful to answer. Every time I do I have to admit just how much my conditions are holding me back, re-accept my deficits and everything I’m consequently not achieving. All in all I am super proud of myself, despite battling seizures, anxiety, depression and discrimination my entire life, I still got myself a Masters! Yet I don’t meet the societal expectations and probably never will.
I know everyone travels at their own pace, towards their own destination. And I am confident, for the first time in a while, that I will eventually reach my full potential. It’s just difficult to discuss whilst I’m still travelling up a very steep, uphill road.
At the start of this Summer I was the lowest I’ve been in four years, yet as Autumn makes itself fully known I’m in the best mental state I’ve been in probably for a decade. I don’t know what it is that has triggered this drastic change in the way I think and consequently feel, perhaps 24 is just a magic age, but for the first time in forever I am reasonably ok with being me.
I am by no means fully at peace with any aspect of who I am. The restrictions I face on a daily basis due to my multiple conditions still fill me with a bucket load of frustration and self-disdain. Yet I seem to have developed an ability to view everything with an overriding sense of relativity.
My life as whole may not be moving forward, I still have no stability whatsoever. My seizures are not controlled and I’m no closer to knowing when my surgery will take place. I’m still feeling excessively lonely with both my sisters now permanently away (at least semi-permanently anyway). And one year on from finishing my Master’s degree I have no job or further academic position in place. Yet despite consistently fearing how upset I would feel when I reached this time of year I’m ok with it all.
I have realised that despite not moving forward at the same pace as my peers, I am doing my best. I’m consistently working on my art and animation improving day-by-day, I’m developing relationships with new people and retaining the ones I already have, I am getting up each morning, drinking coffee and getting dressed. That last one is, in itself, an achievement.
I don’t know what I will face next, but I know everything could be much worse than it is. Perhaps simply accepting the negatives of life has made me realise just how many positives I have. The simple fact is, when I count all the struggles I face day-by-day and weigh them out in comparison to things I am doing, I’m thriving and in weird way I don’t think I’d want my life to be any different to the way it is.