Neglect in the time of Corona

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.

Pharmacy (Yesterday)

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.

A Quarter of a Century Young

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.

Here’s to another quarter of century of life!

Dealing with the heat when you have sensory differences

As stereotypical Brits we all hate the heat (then again we also hate the rain), however, when you have autism (ASD) and consequently sensory differences, a little bit of sun can be almost impossible to cope with.

As I will always emphasise, ASD effects each and every person differently, that’s part of the reason we call it a spectrum. I can only write based on my own personal experiences so what I say may not help everyone but I hope it can least help somebody.

As my sense touch is heightened one of my biggest issues is finding clothes that are comfortable yet cool enough to wear in intense heat. Admittedly finding any clothes that suit my sensory needs whilst remaining fashionable and flattering is a challenge, but that’s a whole other blog! Personally I can’t bear feeling any of my skin touching other bits of skin. This becomes even more uncomfortable if I’m sweaty so even a vest top can become irritating after a while as I begin to feel my armpits rubbing together. Shorts are an even bigger issue as to avoid my inner thighs rubbing they have to be tight around the crotch whilst also reasonably long. When sitting for a long period of time I often drape a thin blanket across my lap and dip it in between my legs. I also don’t like feeling my hair on the back of my neck so the neckline of my tops also needs to be quite high, I’ve found that collared shirts work really well for this and their often very thin too.

A second problem I have is that if one part of my body is more exposed and colder than the rest the whole of me feels cold. If I’m wearing shorts and a t-shirt but then put a jumper on when the sun goes in I may begin to shiver even if it’s still 20° or more outside. If I’m in a car and someone opens a window or puts on the AC I feel it far more significantly than other people, especially if it’s only coming from one direction or isn’t equal on both sides. So over the years I’ve found that I’m much more comfortable being too hot than even a little bit cold.

The one part of my body I cannot bear being hot is my feet but I struggle walking around bare foot as I feel every little crumb on the soles of feet. To put this in context, last night my extremely diligent mum thoroughly vacuumed and mopped the entire house, yet I still found myself walking around on tiptoes and wanting to flick small bits of dust off of my feet. I literally feel everything so I either wear sports socks which absorb sweat or walk around in my slides.

All my life my main stim has been fiddling with a blanket or a rag in my fingers, I particularly like it cold but this is hard to maintain when your palms are clamming up and holding anything just makes your hands hotter. An additional add-on to this problem is that I get very dry hands and have eczema due to me not liking the texture of towels and not drying them well, so when I’m constantly feeling sticky it’s not a great idea for me to frequently wash my hands as one normally would as this makes my eczema flare up and can cause pain and discomfort.

Over the years as I’ve matured and learnt to understand my condition better my tolerance has improved and I’ve found ways of coping but it’s not just touch that is an issue.

Bright sunlight can be very difficult to deal with for anyone who, like myself, has an increased sense of sight. As a kid I was obsessed with sunglasses and my parents would often tell me it was rude to wear them when having a conversation. It’s only now that I understand wearing them was a need not a want.

On a slightly different note, when the sun comes out the societal expectation is that one should socialise. Family barbecues and summer parties are a big thing but for anyone that has social difficulties and/or anxiety this can be very stressful, especially when trying to cope with sensory overload.

So here are my top 5 tips for dealing with heat:

  1. Find clothes that you find comfortable, ignore the fashion of the season, shop for you!
  2. Always make sure you have a pair of sunglasses or a hat with you.
  3. Wear multiple layers and/or take spare clothes, that way you can regulate how hot or cold you are no matter what situation you are in.
  4. Know your limits! Just because it’s hot you don’t have to go outside! 
  5. Stay hydrated and don’t forget to eat. It sounds obvious but when dealing with multiple discomforts one can often forget the basics and sometimes that may be all you need.

I hope this has been insightful and potentially helpful, if you have any questions feel free to leave a comment. And if you want to know more about sensory differences visit the National Autistic Society’s info page here.

Autism Awareness via Letters and Notes

Going through some old files recently I found some letters and notes written by child Susanna. Letters and notes that are distressing and need to be seen as they highlight the full effect that Autism has on a child. Today is World Autism Awareness Day, so I figured what better time to share them than now….

This is the earliest, I believe I was about seven or eight at the time I wrote it as I wasn’t yet using pen and that was when I first became interested in films (something I mentioned wanting to get involved in on the opposite side):

As a child I never intended to misbehave. As this note so clearly states I was simply unable to vocalise the frustrations I was feeling which meant the anger just continued to build inside of me and the only way I had to release it was to lash out at others.

Despite me being aware that this wasn’t in my control, from the moment I entered formal education I was labelled as naughty. I spent more time standing outside the Headteacher’s office, on display to the school, than I did in actual classes and as you can see this had a profound effect on my mental wellbeing. No child should even be aware that killing one’s self is a thing let alone feel like they want to do it.

In these hard times I am struggling and with the whole family locked up in one house tensions are running high at the moment. Even today, every single time I lose my cool I’m filled with these same emotions. I just want to be good but when things get too much, ‘my mind sort of stops’ and I just can’t control what I feel or do.

The next two letters are written directly to my mum. Over the years I’ve written many apologies and explanations to my mum. I’ve always struggled (as mentioned above) to discuss my feelings so I write instead, that’s why I begun blogging, as a coping mechanism. These letters come as a pair but deliver two very different messages:

I find this first letter rather humorous. I mean what kind of 10 year old can use the word ‘privileges’ in the correct context? But as innocent as the message seems there’s more to it. I didn’t receive my own room for another eight years and even now I still crave that sense of ‘space’. Because of my autism I have heightened hearing so even when in my own room it’s hard to totally separate myself from stressful situations.

In regards to the privileges I requested, it was round about this time that, maybe because of this letter, maybe not, I was allowed to stay up one hour later than my sister once a week to watch Bleak House with my mum and ever since then period drama has kind of been our thing.

This second letter is actually the one that I find (out of all of them) registers deepest with me:

As some of this is written in yellow which is hard to read I’ll translate:

I have realized that I’m useless at everything. I’ll never ever get my level five or be good at netball or ever grade in karate.

When I found these two letters I was feeling low and ‘useless’. It was hard to accept the idea that I’d been feeling the exact same stuff for over 14 years and nothing had changed. But then I read that list, the list of things 10 year old Susanna would never do and I realised I’ve done them all.

The most significant was ‘my level five’ which refers to my Year 6 Maths SATs exam. I was only predicted a Level 4 and was being privately tutored by the school Maths teacher in order to improve my chances. However, both her and my class teacher were pretty certain that Level 5 was out of the picture.

But on results day as the teacher, rather insensitively, read all the results out to the class she took a little gasp before announcing that I had in fact got the passmark for Level 5. My mum was helping my sister’s class with an event so I ecstatically asked if I could go and tell her. As I pelted down the corridor filled with pride and joy I ran into my tutor before bursting through the doors to the main hall and leaping into my mum’s arms.

I’ve been trying to cling on to that feeling of achievement recently, reminding myself that I may be on an extended hiatus but I’ve achieved a lot. I may not match up to societal expectations but despite everything I’ve got a bloody Masters!!!

The date of this final letter is a guess made by my dad and it’s only now that I’ve realised just what it may be about…

If my dad’s prediction is correct, I believe this was written shortly after I started secondary school, potentially when I got suspended for 24 hours for losing control and lashing out.

I found it really hard transitioning from primary school to secondary school. I went from a familiar environment with people I’d known forever to a place where I knew no one. I was an outsider and struggled to make friends, I also couldn’t cope with the increase in workload and need for organisation. I was bullied from the moment I stepped foot in that school until the moment I left and for six whole years received barely any support. I was simply punished, made to feel like everything I did was wrong even when it wasn’t in my control.

The sense of guilt and responsibility mentioned in this letter still runs through my blood and dictates so much of how I feel about myself.

The reason I’ve chosen to share these personal letters is to emphasise that, none of the negative emotions mentioned in these letters have ever left me. Autism doesn’t just go away. Yes I’ve learnt to understand myself better, I’ve taught myself ways of coping and I’ve overcome specific issues but my brain will always be wired differently to that of a Neurotypical person.

I genuinely believe that if I’d been diagnosed earlier, received support throughout my education and generally just been better understood, my life would be different. I could show you many more files that prove just how much I was let down by the education system but that’s not the point of this blog.

To summarise it all here is one last picture, one last note written by child Susanna. It says it all and I think the only thing that’s really changed is that about 14 years on from writing this I now know the answer to number four, the answer is Autism:

Just Stop Asking

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.

Stop Banging on About Dogs

Remember, remember the fifth of November,
Gunpowder, treason and absolute hell for anyone with audio sensitivity.

This is a slightly edited version of a blog I posted this time last year. You see, in the week leading up to Guy Fawke’s night lots of people complain about how traumatic it is for their four legged friends. This year the conversation appeared to be triggered slightly earlier when Sainsbury’s made the bold move to stop selling Fireworks and the RSPCA released a new report on the effect it has on dogs. Yet not a single news organisation has discussed the effect that fireworks can have on humans.

One of the main symptoms of Autism (ASD) is sensory differences, meaning one’s senses are either increased or decreased in intensity. Many people, like myself, have increased audio recognition, meaning loud sounds are very loud. There are around 700,000 people in UK with ASD, and many more who are undiagnosed, so why are we being ignored?

The only report I could find on this was from CBBC’s Newsround (It’s quite a good report which you can see here), yet as the National Autistic Society rightly states on their facts page, autistic children grow up. For 24 years I have suffered through and endured fireworks night, the sound alone is almost impossible to process but when you add in the social aspects of parties and the issue of excessive touch stimulation as the result of being in a crowd on a cold November night, it very quickly becomes impossible to cope with.

What makes this situation worse is the fact that it isn’t just one night. Guy Fawke’s night coincides with the Hindu Festival of Diwali and as much as I respect religious tradition this means more often than not fireworks are being blown-up for over a week simply lengthening the pain that people with ASD have to go through. On top of this, just like Halloween, Christmas and New Year’s Eve this is another annual event that in recent years has drastically expanded in capacity due to commercialism. Half the people celebrating Guy Fawke’s demise probably don’t even know what the event is all about, they’re just joining in and using it as an excuse to have a party. I mean, it essentially commemorates the survival of the British government but who wants to currently celebrate that anyway? (A joke included in last year’s post and is even more relevant now!)

By no means do I feel that firework shows should be banned, they do look beautiful after all, I just feel there must be a quieter way of doing it. Perhaps coming up with a system that means only organisations can purchase them for communal events, rather than individuals, would limit the sporadic nature of the situation giving people with ASD a chance to actually prepare rather than spending two whole weeks locked up inside with headphones on. This sort of system wouldn’t block the use of fireworks as a means of celebrating light or a bloke who tried to destroy parliament, it would simply make it more manageable as a whole, consequently reducing accidents as well.

Last year I ended this blog in a more general manner, looking at the overall social climax that takes place during these last few months of the year. That in itself could be an entire thesis let alone just a blog. But I want to end this one by re-emphasising the initial point. Fireworks don’t just distress dogs, they make life absolute hell for humans too. So stop moping over your howling four legged friend and share this information, none of the newspapers want to after all!