I have gone over this in my head so many times now and debated whether I should ever even post this because the idea of putting myself and such personal things out there is pretty daunting. I’ve had a go at blogging before and I did enjoy it but I don’t think i’ve ever spoken about something so personal before and it scares me how vulnerable it makes me feel. I am however trying to face my demons and be fearless as a result of whats been going on with me recently, and if by sharing my story and experience I can inspire just one single person then I will be proud that I did this and have no regrets about posting this.
Some of you may already have a bit of an idea that I’ve been quite poorly recently. Before this all started, I was absolutely fine. My life was in fact in the best place it had ever been. I had just got a new job that I was absolutely loving, I had moved into a new home with my boyfriend, I was a social butterfly, whizzing around in my little car and loving life, doing what every other 19 year old does. I was happy and I was healthy. I actually have some pictures that were taken at my nieces christening just days before all of this started and I just look so happy and carefree. It makes me quite sad to look at them because you can just see that I had absolutely no idea that my whole world was about to explode, and I think that is so scary. It just proves how quickly everything can change. Things happen and you can’t prepare for them and I hate that more than anything.
For about three weeks prior to the christening, I started to suffer severe sickness. This went on for about a month. At first, I was being sick just a couple of times a day. I didn’t mention it to anyone because I didn’t want a fuss. I felt fine and I didn’t think anything of it. In my head, it was just a little phase that my body was going through, however, right after the christening, the sickness got a lot worse. I was being sick up to twenty times a day and I couldn’t hide it anymore. I ended up going to the out of hours GP at the hospital. He was going to prescribe me some anti-sickness tablets, but I vomited about 4 times just in the hour we were at the hospital so it was obvious I wouldn’t be able to keep any tablets down. Instead, I was given an anti-sickness injection. Immediately after, I started to feel very unwell. I remember saying to my boyfriends mum that I felt like I was on drugs and that I felt very ‘spaced out’, but we got in the car and drove home thinking nothing of it. I decided to sleep it off and spent the rest of the day napping, but when I woke up, I was still being sick. The injection obviously hadn’t worked and had just made me feel worse. I decided to have a bath to make myself feel a bit better (little did I know that this would be the last bit of privacy and relaxing bubble bath I would have!) I got out of the bath and started to get ready for bed as usual and then everything just went blank. I had my first faint, which would be the beginning of many many unconscious spells.
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| Being poorly is not glamorous haha - my first EEG! |
The next day, I tried to take it easy, but I was still being sick and after 2 more faints and falling unconscious for nearly 15 minutes, the paramedics were called. That would be the first of many paramedic visits to the house. I was kept in hospital for a few days where I was monitored. I continued to have faints whilst I was there and it was eventually suggested that I might have a condition called Postural Tachycardia Syndrome (PoTS). Whilst I don’t officially have a diagnosis yet and I am still awaiting the tests to confirm this diagnosis, there is evidence to suggest that this is part of my problem. It basically means that in people with the condition, the blood vessels do not work like they should to supply the right amount of blood to where it needs to go during certain positions, thus causing a significant rise in heart rate and blood pressure and eventually resulting in a faint. It also comes with symptoms of breathlessness, dizziness, heart palpitations, chest pain and a general feeling of being unwell. For example, in regular people, the blood vessels will dilate upon standing and push the blood back up to your brain, however, in potsies, that doesn’t happen so they get a feeling of ‘head rush’ and their heart and blood pressure over compensate to try and get the blood to the head as quickly as possible. The first time anyone found any evidence to suggest me having PoTS were the paramedics and it was literally just like a lightbulb moment. They were baffled. They did a standing/sitting blood pressure and heart rate check and found that my heart rate shot up from 60 to around 140 upon standing, resulting in a faint. They did the test about 6 times in a row to prove it, and the same thing happened every time. I’m not officially diagnosed from that, but hopefully, the tilt table test (TTT) that I am due to have this month will confirm the diagnosis and I can finally start treatment!
My faints continued to be a problem back at home, with me suffering several a day. I could no longer drive and had to go on sick leave from work. I tried lots of different things to try and make the faints stop, but they only got worse. They gradually progressed into a more serious problem, starting with them occurring more regularly. Then they began to be accompanied by subtle convulsive movements, where my chest and my arms would twitch until they eventually became full-blown tonic clonic seizures. This is what most people would imagine when they think of a seizure: violent shaking all over the body, frothing from the mouth, tongue biting, incontenance and eyes rolling to the back of the head. Those things are all now a regular occurrence for me and I am now suffering with these episodes up to 15 times every single day.
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| The seizures are so violent now that I am constantly covered in bruises. |
Obviously, it is now unsafe for me to do pretty much anything on my own, let alone with people helping me. I have lost every little bit of independence I had, which has been very difficult to accept as I’ve always been the type of person who thinks ‘if you want something doing then do it yourself’. I can’t shower on my own, I can’t leave the house, I can’t use the stairs alone, I can’t even walk from one room to another without having someone help me. The reality is, every simple little thing is now a danger to me. Every time I do or touch something, I have to consider the risk it has of putting me in danger. Even holding a cup of tea is risky now, as we found out the other night after I threw it over myself during a seizure. They can happen at any time and it is very rare that I will get any warning signs, although other people sometimes know before me that I am about to have one as I tend to go ‘distant’ and stare without responding to anyone. Myself and everyone around me has to constantly be on the ball. I’ve learned certain triggers, such as showering, using the toilet, eating and getting too hot. Even laughing too much can set me off which is so sad because I love laughing! My boyfriends brother is particularly good at setting those ones off as he is almost guaranteed to have me in hysterics about something stupid every time he visits! Although I do recognise some triggers, its still so difficult to predict exactly when they’re going to happen so I’m still constantly putting myself in danger. I’ve fallen down the stairs several times, almost drowned in the shower after I was found having a seizure face down in about 6 inches of water, had black eyes and my chin glued after falling flat on my face and I’ve even found that simply going to sleep is dangerous after having a seizure and vomiting whilst simply trying to get a good nights sleep, all resulting in many visits from the paramedics and lots of admissions into hospital!
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I was left with a nice scab on my forehead after falling down the stairs! |
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| I've had to have my chin glued back together - another admission to hospital! |
My condition has completely changed my life. I obviously can no longer drive, and that has been a massive thing in trying to accept. My car was an escape route for me when things got tough and I used to love nothing more than jumping in it, blasting some music and going on a long, pointless drive after a stressful day to help me relax, and it would always cheer me up! Its ironic that the time I need that more than ever is the time that its literally impossible for me to do so! Losing my ability to drive has also snatched me of a lot of my independence and it now means that I have to rely on people for literally everything. I can’t just nip to the shops anymore when I need something and I hate that. I remember when I first got ill, I broke my razor after dropping it in the shower and I didn’t have any spares so I genuinely was hysterical because I couldn’t just go and buy a new one! It sounds ridiculous but the smallest of things are now such a big deal to me! I’ve also unfortunately lost my job since becoming poorly, and I think thats been the hardest thing to accept. I’ve worked ever since I was 14 and I loved the sense of security and routine it gave me. I always worked so hard and I finally felt like I had got to the place where I wanted to be in my life and so it is horrible to have lost that and feel like you’ve worked so hard for nothing but its the reality of being unwell. Some things just can’t be how they used to be. It would be ridiculous to expect me to hold down a job whilst I’m like this, and as much as I like to think i’m invincible, i quite simple am not super woman!
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| I never know when i'll end up back in hospital. |
So what is the reality of my life now? I wake up after sleeping for 12+ hours, still exhausted. Any sleep I did manage to have couldn’t even escape my biggest problems as peaceful dreams are soon turned to nightmares with my seizures following me there. The worst ones are when i’m trying to run away from danger (usually some sort of horror movie style mass murderer…nice) but I can’t because the seizures won’t stop. I eventually manage to drag myself out of bed and try to prepare myself for what problems I might face today. The first obstacle is the shower, which I try to do as quickly as possible to avoid having an episode whilst showering and potentially risking drowning (…again). Then comes the first seizure of the day. When I finally regain consciousness, i am simply terrified. My heart is pounding (it went up to 270 bpm during one seizure!) and I feel like I can’t breathe as my body tries to catch its breath. I can hear my loved ones talking to me trying to wake me up, but I can’t respond no matter how desperately hard I try. I worry that I won’t ever be able to open my eyes. I try not to panic but its so hard not to think that the worst is going to happen. When I finally regain control, I open my eyes and its as if they’ve been glued shut. The light blinds me as I try to focus. I feel sick, and my head hurts. My mind feels foggy and my whole body aches as if i’ve run a marathon. If my body has decided to give me a particular punishing, I’ll sit up to find myself soaked in my own piss, and sometimes even vomit…glamorous right! Then I pull myself together, despite feeling absolutely exhausted, and prepare myself for the next challenge.
Despite how rubbish I feel, and how pointless it sometimes seems, I make sure that every single day, I get up and I do my hair and make-up as if I normally would if I wasn’t unwell. Its the only thing that makes me feel like I have some sort of purpose to my day and keeps me feeling normal, and although it’ll only be done to sit around the house, it somehow makes me feel like the old me again. It very rarely stays nice for long as yet another seizure results in false eyelashes hanging off, mascara running down my face and hair extensions matted between each other, but for at least a tiny part of my day, I finally feel good.
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| I still try and make myself feel nice (even when i've had a massive great shiner!) |
The rest of the day is spent binge watching rubbish on tv, scrolling through the same old posts on social media, napping and playing with the dogs. I honestly think if it wasn’t for the dogs, I probably would have driven myself insane by now. Nothing lifts my mood more than having 2 little fur balls jump all over me and give me kisses and just make me feel like i’m not on my own. Its so hard not to feel isolated when you’re in a situation like this, even if you’re surrounded by people, but the dogs are just as restricted as me so I feel like we can relate to some extent. Plus, they’re just adorable so how could they possibly not cheer me up!
I know that eating triggers my seizures, so I try to get through most of the day without eating anything. I’ve never really been a breakfast/lunch kind of person (bad I know but I just don’t get hungry) so I know my body can cope with that. I snack if I need to but I avoid large, aggravating meals as much as possible. Then comes dinner time and i’m absolutely starving so I eat as much as I can as quickly as I can which then always leads to yet another seizure. Its got to the point now where I can no longer eat at the dinner table because its just not safe as I end up flying off the chair onto a stone floor. I used to love sitting round the table and listening about everyones day but its just another thing I can’t do anymore, but i’m learning to just accept it for what it is now.
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| Just one of the many times i've face-planted my dinner haha! |
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| I couldn't go out for my birthday so my friends and family threw me a party at home! |
The day will pass with many more seizures so I often find myself in bed by about 9pm because i’m basically a grandma and tiredness only aggravates my symptoms. For most of the week, this is okay but I really struggle with it at the weekends. Saturday nights are the worst for me because I see everyone else getting ready to go on a night out and social media is full of everyone having fun and living their lives…and then theres me, twenty years old, lying in bed on-top of a piss proof sheet with a cup of tea instead of a vodka and coke. How on earth am I ever supposed to be okay with that? All of the events and nights out I’ve missed out on because of something thats completely out of my control. I’ve missed celebrations for halloween, christmas, mine and my boyfriends first anniversary and even my birthday. It just seems so unfair. I don’t like feeling sorry for myself or other people pitting me but I just will never be able to accept that this is what my life has become out of nowhere. Im finding things a bit easier now that the pressures of having to do something to keep up with everyone else for all of those events is gone as the dates have passed, but I still want to be out there having fun just like everyone else. As silly as it seems, I would risk going out just to make myself happy and be like everyone else. I tried it once before Christmas and it did result in a seizure in the middle of the dance floor (sorry to everyone whose night I interrupted!) but it was worth it! I was no more injured than I am when I fall at home and I actually had fun! I just know that now they’re more violent and aggressive, it’s not nice for other people to see (and also quite embarrassing if my bladder decides it doesn’t want to work again!) and it’s a big responsibility for my friends to take on if they take me out.
Again, I have not received an official diagnosis for my seizures, however it is thought that I either have epilepsy (where the brain fires abnormal electrical signals) or non-epileptic attack disorder (basically epilepsy but without the abnormal electoral signals, and more to do with the nervous system - the best way to describe it is by comparing the body to a computer that has too many windows open and so it reboots itself), though there is also speculation that it might be a heart related problem. I am due to have lots of tests done this month to finally get a diagnosis (hopefully) and start treatment so an exciting, and potentially life changing month lies ahead!
So obviously, things have been pretty challenging recently and my life has changed in ways I never imagined it would. I think thats a big weakness in a lot of people, myself included. You can never quite predict when things are going to fall apart and so you can never prepare yourself. Thats what makes it difficult, because you’re exposed to this completely unfamiliar situation and just expected to deal with it as if you even have the slightest clue how to go about that. You might think that you’ll be able to handle it when life decides to take a complete U-turn, but the reality is, no one can possibly prepare themselves for their whole world to fall apart. As brutal as it is, you just have to take it as it comes. You have to accept that sometimes, things don’t work out the way you planned, and although its never easy to come to terms with that, there are certain things that you can do now, before that happens, to make it a little easier if things do ever decide to go belly up. I’ve had a lot of time to think lately, and that has unfortunately led to me regretting a lot of things. Thats why I want to share my story. I want to make sure that if anyone ever has to go through anything like I have, that they don’t sit there being miserable and regretting all of the things they didn’t do whilst they had the chance. I want to inspire people to go out there and make the most of each day and do everything that they want to do because I know just how quickly things can change and how awful it feels to sit there and regret taking the simplest of things for granted.
When you’re so young, and you’ve never had a reason to understand just how unpredictable life can be, you forget that having the ability to live your life rather than just exist is not a given right and you’re extremely lucky to be able to do any of the things that you take for granted. I know that so many of us, including myself, are so ignorant to the fact that we think we are just entitled to do what we want when we want to do it, and that things will just always continue to be that way because “nothing bad will ever happen to me”; but then the unexpected happens and you realise just how significant the smaller day to day things in life are, like what I would do just to be able to simply take the dogs for a walk again!
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| I miss simply being able to walk the dogs. |
I’m not sharing my story because I want sympathy or for people to feel sorry for me. I’m doing this because I think that not only will it let me finally release everything that i’ve been building up and perhaps even help me come to peace with what i’ve been going through, but it could help other people that might be going through something similar to know that they are not alone. I know all too well how lonely you can feel in situations like this, and how easy it is to feel like you’re the only one suffering as you watch everyone else getting on with their lives, not having the slightest idea of how much you are suffering. I know how it feels, and its okay to feel angry and resentful. Just don’t let it hold you back forever.
Sometimes it takes someone else’s troubles to flick a switch for you and make you realise and finally get your shit together! Whilst I am by no means comparing my condition to this, its like the ‘Jade Goodey Effect’. It literally took a young woman to die of cervical cancer in the spotlight to make people realise just how important smear tests are and finally start taking them seriously. My story isn’t necessarily going to save anyones life but it might make people want to start doing something to better their life and start actually living rather than just existing. It might push you to finally go to the gym rather than putting it off for yet another day. It might push you to finally arrange that night out with your friends that you’ve been talking about for weeks rather than spending another saturday night watching trash tv, It might make you finally take your dogs on that one beautiful walk that you’ve been meaning to do for a while rather than putting it off because you would rather have a lay in. It might make you take up that extra shift at work because having the opportunity to earn a bit of extra cash isn’t really that bad. Do it whilst you can because you are so lucky to be able to even have that choice!
I know that there are so many things I regret not doing before I got ill. Most of them seemed silly at the time which is why I put them off but I am desperate to be able to do them now. For example, just before I got poorly, my cousin and I went for dinner and we debated taking a spontaneous trip to the seaside just because! We decided not to in the end because I had work in the morning and I didn’t want to get back too late and be tired the next day! How stupid do I feel now!? I put off what could have been such a fun experience for the sake of a couple of extra hours in bed! Its stupid because i’ve always been someone who feels tired whether they’ve had 10 hours sleep or 3 hours sleep! I would honestly slap myself if I could go back in time.
Likewise, I stopped driving about a week before I got seriously unwell because I didn’t want to risk being sick in my car. Now i’m thinking, ‘who gives a shit if i’m sick in my car?! It can be cleaned! I love driving my car! What is the worst that could have happened?!’ If I knew that the last time I drove would have been the last time, I would have put my best spotify playlist on and just driven wherever until I ran out of petrol. My car is instead sitting on the drive with a full tank of petrol, with its wheels slowly deflating and battery slowly dying…what a waste.
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| I can't wait to start driving again! |
I also wish that I could have taken more opportunities to do nice things for my loved ones and show them how much I appreciate them. Theres nothing more that I want to do now than just express how thankful I am to them for everything they have done for me over the past few months. They have kept me going when I wanted to quit and made me smile even on the darkest of days, and theres not really anything I can do to show them how grateful I am and it frustrates me because words are simply not enough. I’m very aware that this has been just as difficult for them as it has been for me. They live and breathe this every single day and have to constantly worry about whether i’m okay or not. They have to sit and watch as I’m pricked with needles and lying there terrified about whats going to happen to me. They have to sit and watch, wondering if i’m even going to wake up this time after yet another nasty fall. I hate that not only does it hurt me, but it hurts the people I care about the most too. They’ve never once complained and I honestly would be lost without them. I just wish I could do more to let them know how grateful I am. I wish I could say, take a break, i’ll make dinner tonight, or you’ve been working hard, let me treat you to some lunch. The reality is, I can’t even hoover one room without it making me have a seizure, but I know that as soon as I am better, I will never miss another opportunity to show them how amazing they really are.
Basically, what I am trying to say is that do not let yourself live to regret things. All of those simple little things can be snatched away at any time and its not until then that you realise just how massive they actually are. Its not always the most expensive 5 star get aways and lavish meals that you’ll appreciate when it matters. Its the simple things in life that you take for granted (like having a relaxing bubble bath! Oh my goodness what I would do to have a bath without having to worry about drowning!). They’re not a god given right and not everyone is able to do them, no matter how much they wish they could. You have to keep in mind that things could change at any minute and you need to make sure that you don’t sit there regretting everything you didn’t do like I have. All it does is make a hard time even worse. If I could be thankful for one thing the last few months have taught me however, its that life is so precious and you have to snatch every amazing moment that you can whilst you can. I know that as soon as i’m better, never again will I let myself ever have to regret not doing all of the things I wanted to. There will be no stopping me! I know that some things might be more difficult now, as i’m always going to be labeled with a condition, and that might put a few obstacles in my way but I will not let it define me, and I certainly won’t let it beat me!
My family have kept me going!
I might not be very good at catching all of the lemons that life is throwing at me at the moment, but as soon as I do, I’m taking them straight to the nearest bar and mixing them with a nice big glass of gin and tonic to mark the start of a new, fearless me!
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| Still smiling! |
