Tuesday, 11 March 2014

The dangers of antibiotic overuse.

Soooo. I've just been in hospital with something that was totally preventable.

Let me lay out some context. 

Since March 2013, I've been struggling with recurrent UTIs (urinary tract infections). I've had some infections that have been further up as well, i.e. in the bladder - these infections are known as cystitis. The treatment for confirmed UTIs and cystitis is antibiotics. I've had about 18 suspected bouts of UTIs/ cystitis in the last year, which means I've been prescribed a fuck ton of antibiotics. However, not all of these were tested and confirmed, meaning I might have been treated with antibiotics inappropriately when the symptoms could have just been due to an irritable bladder as a result of previous infections. Certainly the urologists I saw prescribed me some low-dose antibiotics as a preventative measure (despite the many courses of antibiotics I'd taken previously). This was in spite of my protestations that I didn't want to take any more antibiotics and despite my suggestions of other options based on my own research. They insisted that the antibiotics were the only way forward. It was the most recent low-dose prophylactic course of Cefalexin that seems to have caused the issue that led to me being hospitalised. That issue being a Clostridium Difficile infection.

Clostridium Difficile, or C. Diff as it's widely known, is a bacteria which can infect the gut and cause some truly nasty symptoms. Those that are deemed susceptible are elderly people, those with weak immune systems, and those who have been on antibiotics. I'll describe my experience of it. 

Last week, I woke up one night in the most horrific pain I've ever been in. On a scale of 1-10, it was an 11. The pain consisted of the most crippling stomach cramps I've ever had. I've had bad stomach cramps before, but they've usually gone in 10 minutes and as soon as I've had an episode of diarrhoea (TMI I know, sorry!). In those situations it was like something I ate didn't agree with me. However, this time those stomach cramps lasted 3 agonizing hours and I was trembling, vomiting, and had about 7-8 episodes of diarrhoea with blood in. I was in so much pain I wanted to get an ambulance out because I was terrified something had ruptured and because I was desperate for some pain relief, but I live on my own and had no way of getting to a phone because I was so incapacitated. In the morning I was tempted to phone my GP surgery but I figured they'd probably fob it off as IBS since they seem to do that with most things bowel-related, in my experience! Also the episode had passed so there wasn't really a lot they could do. I still felt really unwell in myself, but I had an appointment at hospital that morning (heart-related) and didn't want to miss it as I'd have to wait months for another, so went to that. A bit later in the day I had another episode of diarrhoea but this time the only thing that came out was blood which was when I knew something was definitely very wrong.

I couldn't get through to my GP surgery so phoned 111 and asked what I should do. Based on my symptoms, they said I needed to go to A&E immediately and sent out an ambulance which was pretty mortifying because I really didn't feel like I needed it. I've been to A&E three times in the last three months and quite a few more times in the last few years and every time I've been treated like crap by doctors because my symptoms (usually heart-related) are invisible and they presume I'm just over-reacting. I always get sent home, told to take some pain relief and get over it.

An ECG was done in the ambulance (I think to rule out my stomach pain etc being caused by an aortic aneurysm) and they marvelled at my arrhythmia (yes, I have a heart arrhythmia too. The brokenness of this body is extensive!) and we also talked about my EDS as they hadn't heard of it before and wanted to understand it.

When I got to A&E I was actually given a bed straight away rather than made to wait in the waiting room - that's when you know that shit's going down. They initially suspected that I had a bowel bleed related to my EDS. They stuck in a cannula, took some blood, started me on some IV fluids and gave me some pain relief. 


I also had a doctor's finger stuck up my arse to make sure the bleeding had stopped which was obviously a lovely experience (my face when he did this resembled Munch's Scream.) My boyfriend was kind enough to come in and keep me company for most of the evening while I was stuck in bed attached to a drip and while they waited for my blood results (although I should add that I made him leave the room when arse-gate was under way). By about 11pm they'd decided I'd need to be admitted to the Surgical and Trauma Assessment Unit ward for observation and further tests. They didn't have a bed, though, so I had to sleep on an A&E trolley with the inevitable chaos of an emergency department surrounding me. That and being woken up every hour for obs was not particularly conducive to meaningful rest, but there you go. I was woken up again at 5.30am to be moved to the ward - and can I just say, so much love for the proper bed I was greeted by! Although not so much for the incredibly ugly 70s-style hospital decor.


Later that morning I was visited by about 10 medical professionals who all crowded into my room and stared at me in bemusement. I was told that my bloods were fine, but that I had ++++ ketones in my urine (I hadn't eaten at all since Wednesday and this was Friday morning, so that's unsurprising). They said I needed to produce a stool sample for further testing. I ate breakfast and that set off the bloody diarrhoea again, but on the plus side it meant I could give them a sample. For the rest of the day I was given more IV fluids and pain relief. They also gave me some IV Tramadol which was the biggest mistake ever. I've taken Tramadol orally before and it's done nothing (probably due to my absorption problems related to gastroparesis) - but IV? Holy fucking shit. I was tripping balls, man. Literally within about 30 seconds of me being hooked up to it I was off my tits. I moved an inch and everything would be spinning and I felt excruciatingly dizzy, not to mention nauseous. It was awful. During this time I phoned my boyfriend about him going home and getting me some stuff from my flat, but I don't think I made much sense... I barely remember the conversation! Luckily the nurse realised Tramadol and me don't mix so stopped my IV and let me sleep off the effects and I felt better later on. Generally though I still felt uber unwell and looked like shit; my complexion was kind of grey. Luckily by the evening they had the results of my stool sample and diagnosed me with C. Diff. I was relieved that at least there wasn't a rupture and that this was easily treated. The nurse told me that given my medical history and the amount of antibiotics I'd been taking, especially the Cefalexin, it's likely that was why I got the infection. Ironically, the treatment for C. Diff is a course of heavy-duty antibiotics! 

The reason antibiotics can cause infections like C. Diff. is because they basically kill off both bad AND good bacteria, which means that the gut flora (the bacteria that occur naturally in the gut to help you digest and assimilate food and nutrients etc) are knocked out of whack. This creates an environment where bad bacteria such as C. Diff. can thrive. Some people have small amounts of C. Diff. in their guts naturally (about 3% of people, I remember reading) and don't have any problems since there's enough good bacteria to outweigh it, but in those who have been on lots of antibiotics and ingested C. Diff. bacteria there isn't enough good bacteria to fight it off (especially in my case considering I've been on a LOT of antibiotics for the past year). The toxins and poisons released by the C. Diff. bacteria are what results in the symptoms you get with it. Left untreated for too long, it can lead to severe complications or death. As far as I'm aware, I probably had it for a couple of weeks before it really kicked off. I had been feeling a bit more unwell than usual for a while. This also seems to explain why, two days before I started getting awful symptoms, I went to the pub and got completely *wasted* on only 1 and 3/4 pints of relatively weak beer. I mean I'm a lightweight usually, but this was in a whole new league! There are mild and moderate cases of C. Diff. which cause fever, diarrhoea and stomach pain. Sometimes these cases can be treated by taking the patients off the antibiotics which caused them to be susceptible to the infection in the first place. In my case it was severe and the C. Diff. had caused colitis hence the blood, so it was imperative I started on the heavy-duty antibiotics (Metronidazole).

Mmmm C. Diff. bacteria. Lovely.

Once I'd been diagnosed with C. Diff. (and before actually, as a precaution in case I did have an infection) I wasn't allowed to leave my hospital room apart from to get some fresh air occasionally. I wasn't allowed to other areas of the hospital in case I spread the infection to patients who were vulnerable and susceptible to infection. It made me feel a bit like I was in prison, but I'd rather that than risk spreading it. 

I started on the Metronidazole on Friday 7th and was discharged on Sunday 9th. It's now the 11th and I'm feeling quite a bit better, but still a bit gross probably as a result of a combination of the remainder of the infection and the antibiotics I'm on. I'm making sure to take some VERY strong probiotics alongside my antibiotics to try and replenish the good gut flora I'm obviously so desperately lacking. I'm going to try and make strong probiotics a daily thing because I don't want to be in this position again - especially since now I've had it, I'm 20% more susceptible to catching C. Diff. again. 

It is very contagious so I'm having to stay away from places with lots of people, especially vulnerable people with weak immune systems. It's making me feel like a bit of a leper to be honest, but hopefully once I've finished this course of antibiotics the infection will have kindly fucked off.

I'm sharing this story because I think patients should be aware of the risk factors antibiotic overuse. ONLY take them if you REALLY need them. If you don't feel comfortable with being prescribed antibiotics, talk to your doctor about it and ask if there are any alternatives. If you do need to take a course of them, please try and get hold of some probiotics to take alongside them to avoid obliterating too much of the good bacteria in your body (especially if it's a long course or the antibiotics are broad-spectrum, targeting your entire body rather than one specific area). Probiotic drinks such as Actimel can be helpful, as can capsules and sachets. I'm currently taking Bioglan which have 20 billion bacteria of 8 varieties per capsule. I'm also waiting on a delivery of the most concentrated probiotics there are which have 450 billion bacteria per sachet! (I only plan on taking those ones short-term).

Before I go, I should also say this: despite the fact that it was the poor choices of some medical staff that likely resulted in my infection, all the staff I came into contact with in my resultant hospital stay were utterly lovely. The nurses, doctors and even the people who came in to give me my meals were just wonderful. I could not have asked for better care and I was treated with respect at all times. This is why I'm so grateful for the NHS despite its occasional shortfalls. (The food also wasn't as bad as is often reported! Or maybe I'm just really unfussy...)

Thursday, 2 January 2014

Gastroscopy and results

Today I had a gastroscopy, a kind of endoscopy - they put a camera (on the end of a tube) down into your stomach to have a look around.

I had it done because for years and years (ever since I was a child, actually) I've had problems with my stomach and digestion. The earliest symptom was feeling sick all the time and struggling to finish my meals. Thinking about it, I'm pretty amazed it's taken until the age of 25 to have sufficient investigation into this problem, but I digress. Since the age of about 21 I've suffered with quite bad bloating. I've only discovered recently some of the things that set it off, one of which is fibre. Crazy right? Fibre is meant to be so good for you. It bulks out in your stomach and makes you feel full. This is a good thing for some people because it means they can stay fuller for longer, and it helps you maintain regularity with regards to bowel movements. It's a conventional wisdom that you should have a decent amount of fibre in your diet. However, for me, fibre just bulks out in my stomach and sits there, and then bloats me enormously. My stomach basically just seems to stretch to compensate for whatever's in there, rather than pushing it through my digestive system. So you can imagine how a substance that "bulks" in your stomach is not a good thing. Let me show you an example of what happens when I eat high fibre food such as fruit/ veg:



Nope, not 6 months pregnant. Just bloated. Draw a line from the top of my stomach to the bottom and that is my stomach before bloating, i.e. flat. So you can see how enormous this swelling is in comparison.

This can also happen for no apparent reason. I haven't worked out all of the triggers yet. Another problem is that after I've eaten, things often feel like they're coming back up or repeating on me and I have to frantically swallow to avoid throwing up in my mouth. Tea is a particularly bad culprit for that, for some reason (although I still drink it, and normally it's accompanied by biscuits, and it ends in me almost puking every time but god damn it I'm stubborn). I've always struggled to drink enough water because it just feels like it's weighing my stomach down and I'm going to drown in it. There are many more symptoms but I won't list them all (partly because this post is already going to be long enough, and partly because I want to retain some modicum of dignity. Pffft).

I'm going to describe the procedure I went through today and then explain what was found.

Just a few things to take note of before I continue: I had a really bad experience with my gastroscopy. Please don't panic, it doesn't mean that if you have one it will be the same for you. Everyone seems to have different experiences and many find that it's absolutely fine and a relatively easy medical procedure to endure. I'm sharing my experience, though, because it can be like this for some and I'm sharing the worst case scenario.
Something else I must say before I start: the medical professionals involved were nothing but competent and lovely to me the entire way through, and it was not horrible because of anything they did wrong.

I was told that I should stop taking Omeprazole for the two weeks before the procedure, if at all possible (Omeprazole is a Proton Pump Inhibitor - which essentially means it stops the stomach being so acidic and therefore, in theory, helps to prevent acid reflux). I was also told that I must be nil by mouth for 6 hours before the procedure (food and all fluids, including water). This is so you don't vomit during it. I really struggle with long periods of not eating, though (I get weak and shaky), so I made sure that I got an early morning appointment so that my "nil by mouth" period was when I was asleep anyway!

To begin, I was called in by the nurse to have my blood pressure checked and to go through some forms and questions. The nurse explained the procedure thoroughly to me and I was asked if I would like sedation. STUPIDLY, I said no because it would involve sleeping it off afterwards which I couldn't be bothered with. It was a really bad idea to turn the sedation down, though - more on that later. I was given a numbing local anaesthetic spray in my nostrils, because I was having the endoscope put in through my nose rather than through my throat, which is apparently an approach which results in less gagging than when you have the endoscope administered through your mouth. The spray runs down the back of your nasal cavity and into your throat, numbing your throat at the same time which results in a really odd sensation - when you swallow afterwards it feels like there's a lump there even though there's not. It's not painful, just a bit strange.

I was sent through to an adjacent room to wait for the procedure for about 5-10 minutes. When I was called in I had what was going to happen briefly explained to me again, and I was given another numbing spray up my nose. This was when shit started getting bad. That spray burned like FUCK. Seriously, stingy central. Not fun. It burned up my nose and down my throat, it actually felt like it was all on fire. A few minutes later I had to have some MORE of that spray (at this point I was like... yeah. I'm not enjoying this). To be honest, I don't seem to respond to local anaesthetic of any kind very well - it just doesn't work well on me. So I think I felt more than I was supposed to during the procedure, but anyway, onwards...

I was introduced to the nurses who would be looking after me while the doctor was doing the endoscopy. They attached a peg to my finger to monitor my heart rate throughout. One nurse was by my head and the other one was by my side. At this point I was thinking err... why do I need two nurses to look after me? I thought this procedure wasn't meant to be bad? Let's just say that as soon as the procedure started I understood why they were there.

The doctor tried to put the endoscope (which is a bit thinner than a pencil) up my left nostril but I have a tiny nose and it wouldn't fit through. So he tried my right nostril which was slightly bigger but he still had to really force the endoscope through. That resulted in an enormous feeling of pressure in my nasal cavity, and it gave me a nosebleed (unsurprisingly). It felt like it took a bloody lifetime to get the endoscope through my nasal cavity and down my throat and by this time I had started to cry and was panicking a bit. Having something in your nose (which still felt like it was on fire) is bad enough as it feels like you can't breathe through it, but then having it go down your throat is even worse because then it doesn't feel like you can breathe through your mouth either. It was a really really suffocating feeling. Also, because I don't think the numbing spray worked very well on me, the endoscope was really hurting as it was going down my throat and it felt like I had something stuck down there. I distinctly remember when I was about 12, and I accidentally swallowed a sliced circle of carrot whole. It lodged in my throat and almost completely blocked it so I could barely breathe, and it really really hurt my oesophagus. That's the feeling I got when I was asked to swallow the endoscope. The nurses didn't seem to understand why I was so upset (by now, crying my eyes out, shaking and hyperventilating). I'll tell you why: my nose and throat felt raw and on fire, I had a nosebleed, I was dribbling, I could barely breathe through my nose or mouth, and I felt like - well, like I was having a big old tube rammed down my throat, which I was. I don't think they realised how little effect the numbing spray was having. One nurse was holding my hand and the other was stroking my hair and they were reassuring me, telling me how well I was doing but that was little consolation. I could hear my heart rate going crazy on the monitor and just couldn't get over how fucking horrible this felt.

The next thing I knew, the doctor had apparently finished looking around (it felt like he'd only just got down there! Not complaining that he finished so quickly though...). He slowly pulled the endoscope back up, which made me retch. I was told he was sucking out the air at one point as well (eww). I was taken through to the recovery room with a cold compress on my nose and holding tissues to it which were covered in blood. The whole thing had taken about 10 minutes but it felt like a lifetime because it was so unpleasant/ traumatising.

After this the doctor came in and discussed my results with me (more on this in a minute).

After about 10 minutes of recovery I was told I could go. I had make up smudged all over my face from crying it off and was still shaking. My nose was running like crazy because of the lubrication they used in my nose and on the endoscope. Looking like a sexy beast I went back to my boyfriend's car and probably looked like I'd been through something far more traumatising than you'd expect a medical examination to be!

As for the after effects, I've had a blocked up and runny nose all day (like when you have a bad cold). I've also had epic pain from the numbing spray - my nose and throat were still on fire for a couple of hours afterwards, it felt like there were millions of pins being poked into the roof of my mouth and the back of my nose/ throat. I feel fine now (apart from my nose feeling a bit raw inside), but yeah, the after effects were not pleasant.

The main piece of wisdom I feel the need to share with you about this procedure: FOR THE LOVE OF GOD, GET SEDATED. Don't do what I did and just brave it. Honestly, maybe others' experiences won't be anywhere near as bad as mine and sedation wouldn't necessarily be required, but it's better to have it and not have needed it than not have it and find it ridiculously traumatising, painful and hard to endure.

As for the results: the doctor said that he found no abnormalities structurally in my stomach - no cancer, no polyps, no ulcers etc. However, he did notice that there was no peristalsis whatsoever - my stomach was just "sitting there doing nothing".

Peristalsis is the squeezing motion that the stomach walls enact in waves to help you digest food. I was surprised when the doctor sounded surprised that there was no peristalsis in my stomach - I assumed that that only happened during and after you'd had food or drink, and I had been nil by mouth since the following evening. But no - apparently your stomach should always be in some state of peristalsis, it shouldn't just be constantly still. But mine was doing absolutely nothing, the lazy bastard.

I was immediately glad that he had found this because it supports the theory that I've had for a long time about my stomach issues: that I have gastroparesis. Gastro = stomach; paresis = paralysed. Essentially, a lack of peristalsis meaning that food doesn't get digested properly and stomach emptying is delayed. For a lot of people, gastroparesis gets to the point where they can't keep anything down and just vomit violently every time they try and eat or drink. I am very lucky in that I rarely vomit, I mainly just feel nauseous and feel things coming back up but can normally swallow it back down, so maybe my case is relatively mild. The doctor and I had discussed the possibility of gastroparesis in our previous consultation and the results of this examination completely supported everything he knew about what gastroparesis would look like. He admitted that although he's a GP who specialises in gastroenterology, he doesn't know as much about gastroparesis as consultants who work in that area but he's sure that's what I have and he's referring me to a specialist. I imagine the next step will be a stomach emptying examination to see how long it takes to digest food and to try and work out what will help me manage my condition. Gastroparesis makes so much sense in the context of my Ehlers-Danlos syndrome. EDS is a collagen disorder which causes your tissues to be weak and dysfunctional, so it's not surprising that my stomach muscles are not strong enough to contract and digest things enough. I know a lot of people with EDS who also have gastroparesis.

I did have a bit of a cry after my chat with the doctor - partly because I was still in pain, and partly because I was relieved/ happy that I had had my suspicions validated and confirmed (it's so good not to be fobbed off with "it's just Irritable Bowel Syndrome, drink some peppermint tea"). But also partly because I was just really sad. The thought of my stomach just sitting there lifeless is quite a tragic image. This isn't something that is ever going to go away. There is no cure. I can manage it as best I can but I have to face the fact that it is entirely possible that it will get worse and get to the point where I can't eat properly or at all. That terrifies me because... well... food, man. I enjoy it (when I'm not feeling too sick to). It's a basic human instinct and is hugely important socially, too. Having it taken away would be very upsetting and isolating. I'm trying not to think too much about that at this point, though, and just focus on managing it as best I can.

In terms of management, I find domperidone relatively helpful (it speeds up stomach emptying). I tend to try and have a dose of it before my evening meal which often helps. Omeprazole helps my reflux a bit, and I often take a cyclizine for good measure too (cyclizine works on the part of the brain responsible for feeling sick). The other main management technique for gastroparesis is eating little and often - so essentially snacking through the day rather than having three big meals. That is still something I'm working on getting used to, but I'm sure I'll get there eventually.

Something I'm really struggling with is the situation with fibrous foods. I've always been very health-conscious and try to maintain a healthy diet - and since wholegrains, fruit and vegetables are considered an enormous part of having a healthy diet, I've always tried to include them as much as possible. I *enjoy* eating healthily. So knowing that they aren't good for my tummy is really annoying and contrary to how I instinctively want to eat. Once you take those elements out of your diet, I feel that it's lacking quite significantly in vitamins and nutrition. I don't want to have to live on pasta and rice and refined shit forever. Since I've suspected gastroparesis for a while I've experimented with lowering my fibre intake and it really has helped the bloating situation. But I just don't FEEL healthy when I'm eating that sort of shit. It's a moral dilemma. Do I eat fruit and vegetables and wholegrains and endure mega bloating because I know that they do contain some really important vitamins and minerals, or do I eat refined and processed foods that I know are bad for me but ease my bloating and stop a lot of the gastroparesis-related issues being as severe? It's a real dilemma. I'm trying to aim for somewhere in between the two but it's really hard to find a balance.

Anyway, I shall keep you updated with regards to my gastroparesis journey. I hope this has been helpful if you're curious about either gastroparesis or endoscopies.

Tuesday, 19 November 2013

The history of my mental.

If anyone reading this is familiar with my blog, you will notice I have deleted all my old posts and started again. I just felt like I needed a clean break and I also feel like I've changed a lot as a person over the past couple of years and that previous posts didn't reflect who I am now.

Anyway.

My first post of my refreshed blog is, perhaps ironically, about the history of my mental health, because I think it's important to talk about. I've talked about it in little tidbits all over the internet at some point or other. I've written blog posts about it before, made a couple of YouTube videos about it, and generally have been very open about it (especially in writing). I never feel like I've got the whole thing down though, that I've ever expressed my story properly.

I've seen so many documentaries about mental health recently and each time I watch one it reminds me how shitty the mental health provision in this country is, and of all the awful experiences I've been through trying to get "help". Bedlam has been particularly fascinating - I think that's more often than not an example of GOOD mental health provision, but occasionally highlights the difficulties people face in getting the help they need. I think the mental health episode of 999: What's Your Emergency? was a more accurate representation of mental health care around the country - people waiting for hours by themselves in A&E before they get seen, after which they get sent straight home again having not been taken seriously at all. If we haven't suffered from some kind of mental illness personally, I'm sure most of us know someone who has. This is why the lack of resources devoted to it amazes me so much. The users of mental health services know there need to be improvements, the professionals in the field know there need to be improvements, the family and friends of those who suffer from mental illness know there need to be improvements, and yet it's just going backwards. It seems that this is because 1) politicians and those high up enough to actually be able to implement change are the ones ignorant of the problems 2) some medical professionals are still unsure of how to deal with mental health patients 3) general societal prejudice.

I'm often pondering the stigma element. People seem scared of those with diagnosed mental health issues, as though they are somehow contagious, unpredictable, untrustworthy, dangerous, unreliable, neurotic, morally corrupt, violent, lazy, inferior, attention-seeking, self-pitying - you get the idea. People also often treat you with a kind of repugnant pity. "Oh, she's depressed." One of my family members was always convinced that if I just bothered to leave the house more and socialise, I'd be fine. There's some very very deep-seated reason that society is so terrified of those who have difficulties with their mental health and I haven't worked out what it is yet. Maybe it's a combination of what I've just mentioned but even that doesn't seem to justify our massive paranoia about it. We seem to need to label others with problems, in order to feel comparatively sane ourselves - yet no one seems to understand that we're all on a sliding scale of "mental". We all have issues - some just impact our lives more than others. No one has a clean slate and no one is free of baggage. We are afraid to talk about mental health, as though it's inherently a dirty concept. Well, fuck that shit. Here's my experience.

(Disclaimers: firstly, some of this stuff may be perceived by some people as triggering. I apologise if that's the case. Secondly, if I mention any specific people in this post in an unflattering way, it's not my intention to discredit them in any way or upset them, I'm just being matter-of-fact. If I have included someone's role in something it's because it wouldn't have made sense to leave it out. None of this is to make anyone feel guilty.)

Background.

I have always been a proper weird'un.

I wholeheartedly believe that that is largely in my genes. I did also have a difficult childhood which no doubt massively contributed to my "mentals", but I still feel I'm just genetically predisposed to it.

So as you may have guessed with the whole "depression" diagnosis, I've always suffered from these incredibly intense bouts of sadness. It can happen any time, anywhere, for any length of time. The only thing that seems to help get me out of that phase is time. There's nothing that anyone can do or say to make it go away, I just need to wait. But while I'm in that mood it's like I'm in an abyss that I can't escape from. My perspective is completely skewed and everything is completely out of proportion. I can't respond to anything properly. Sometimes it means I can't find the energy or motivation to get out of bed and often in the back of my mind the overarching feeling is "what's the point?" It's all encompassing, and entirely debilitating. I know it can be hard to understand depression if you've not experienced it personally, and I don't think I'm the best person to explain it. I came across this a little while ago, though, which is the best thing I've ever found in describing what it's like. Seriously everything she said in parts 1 and 2 of her explanation of depression is *spot on*.

from Hyperbole and a Half, mentioned above

I've always been this way, to be honest. I even had suicidal ideations as a young child (I'm talking aged 5). I have never liked myself or had much confidence. At school (even infant school) I would isolate myself because I couldn't comprehend that anyone could possibly want to play with me - and I wasn't interested in what they were doing anyway, because I mentally felt so much older than everyone else. I would rather be sitting in the library than outside in the playground with other kids.


This just continued, and I remember in primary school I actually started to dissociate (without realising that's what it was at the time). I specifically remember one incident where I was looking in the mirror in the toilets at school and thinking, "I wonder how other people see you and whether they like you", and from then on I have always sort of seen myself in third person, experienced everything from outside of my own body, ended up watching things happen to me as though I am watching a movie of myself and whatever situation I'm in. In the back of my mind I'm constantly wondering what someone is thinking about me, and what I can do to change the fact that they "clearly" don't like me (or so my brain tells me). I seem to automatically change depending on who I am around and try and mold myself to the personality I think they would enjoy being around. I don't remember one time in my life when I've thought, "being completely authentic and doing/ being whatever comes naturally to me is okay." Of course, if a friend came to me with the same problem I'm explaining I have, that would be my advice to them. Be authentic! Just be who you naturally are, stop thinking about it, stop doubting and questioning yourself. But when it comes to me? It just feels impossible. I've been this way for so long I don't know how to be anything else. I feel the need to please other people, that's the only thing I've ever been concerned about. "Is the other person in this situation happy? Are am I sufficiently good company for them? Should I be a bit more lively? Should I be a bit less quiet? Oh god, am I coming across as rude because I'm too quiet? Am I boring them? Oh shit, I'm boring them. They hate me."

It's understandable how I got to that point.

I was bullied at secondary school and had a horrible time at home, and I was pretty much made to feel as though no element of me was acceptable. Literally everyone seemed to have a problem with me, so clearly 'me' was the problem, no?

Secondary school was utterly horrendous. I think because I was so unconfident and vulnerable, I was a natural target for bullies. They just seemed to confirm everything I already felt about myself. I was constantly verbally abused, laughed at, had things thrown at me, made to feel like a complete idiot, called a 'boffin' for contributing too much in class and enjoying learning, had rumours spread about me, excluded from a lot of things, etc. P.E. was a particularly bad lesson for me in terms of being picked on and I often used to just sit in the toilets and cry or cut myself instead. At one point when I was about 13 or 14, I actually just stopped talking altogether. Nothing that came out my mouth seemed to be acceptable to anyone, so why bother? I refused to even answer my name on the register as I didn't want to acknowledge my own existence and I didn't want people to make smarmy remarks about me after I'd said "yes" to my name. I even remember in year 11 (so I was 16 I think), someone asked if I had a boyfriend (being sarcastic) and another boy chipped in, "EWWW. Who would ever want to be with that?"

On top of this, I have always had a problem with general anxiety. I'd be terrified that a family member was just going to die suddenly and as a result I'd be terrified to let them leave my side. I was scared of doing things in case something bad would happen to me. I've always had a worry about going into a situation and not being able to get out of it when I wanted (sort of a fear of being trapped), so avoiding that situation entirely. I'd often cancel on plans with friends because it was just easier to stay at home and not have to worry.

I have also always imagined horrific things occurring in environments that are meant to be safe for me - for example, walking into the bathroom and finding someone hanging in there, or something equally gory and traumatising. I still get that to this day. Sometimes I'll come home, be opening the front door and be worried that there'll be someone inside my flat waiting to kill me, or there'll be a dead body inside. It's completely irrational stuff and it's not like I even watched many horror movies growing up (because I already had horror stories inside my head!). Another recurrent image I have is if I'm leaning over the sink cleaning my teeth or washing my face, that I'll look up and see someone behind me in the mirror, holding a gun to my head or a knife to my throat. In general I often sense that there is someone behind me and it takes a while to convince myself there's no one there.

My anxiety has manifested in other ways too: I used to be afraid of eating in front of people at school. I'm not sure why. But I would go through entire school days without eating, only ever eating when I was on my way home and no one I knew could see me (wtf, right?). I went through a phase of only feeling able to drink out of plastic bottles, only eating with one particular knife and one particular fork, and deep-cleaning my room every single day and removing everything in there that might have been indicative of my personality. I also worried sometimes that unless I did a particular thing like cross the street at a particular kerb, someone would die and it would be my fault or generally something awful would happen. I HAD TO DO IT. Luckily I seemed to figure out a way of controlling that/ I grew out of it, I'm not sure which. I'm still prone to going a bit OTT with cleaning - once I start it's hard to stop. But mostly those OCD-type behaviours seem to have dissipated (thank god).

Other than that, I have always suffered with these feelings that often come on suddenly - like I've been punched in the stomach. It's like a gut feeling that something isn't quite right and I'm not where I'm supposed to be and something awful is going to happen. Like a deep dread, I suppose. I have also struggled with my eating at various points (i.e. limiting myself, and believing I needed to starve myself).

I managed to pull myself out of a lot of these patterns before they got serious, but I can really empathise with people that do develop such problems because of how close I was to doing so myself.

Getting help.

My first experience with "help" came at the age of 13 as a result of my mother discovering a carving knife hidden under my pillow. Since then I've been in and out of therapy (seeing counsellors, psychologists, mental health nurses, psychotherapists...) and pretty much none of it was useful up until I started paying to see a psychotherapist when I was 23. I did also have a lovely counsellor when I was at uni, but she was more of a mentor than anything.

But before that, all I had had was bad experiences. I remember seeing a psychologist via CAMHS at the age of 13 and everything I told her was fed back to my mother (not helpful when most of my problems at the time were exacerbated by the situation at home). It just propagated the vicious cycle and I was encouraged to withdraw into myself even more. In the end I sort of "faked" a recovery in order to get out of having to see that psychologist any more. Suffice to say that fell apart after a while. Later on I saw a mental health nurse (also through CAMHS). I remember that before the first appointment I had with her, I was sitting in the waiting room waiting for her to call me in and feeling utterly depressed. I had a lump in my throat and was doing everything in my power not to cry. When she called me into her office and I sat down, her first question (despite having my file right there in front of her with all my information in it) was "so what is it you want me to do for you?". I didn't know! All I knew was that I was entirely miserable and just wanted it to stop. I couldn't bring myself to speak because I was choking on that lump in my throat, so she shouted at me. "WHAT AM I SUPPOSED TO DO TO HELP IF YOU AREN'T GOING TO TALK TO ME!?!" Wow. My psychotherapist at the age of 18 (again - CAMHS were responsible for this gem) completely misunderstood me and brought in my mother and head of sixth form to tell them that I was simply attention seeking. By this time I had had all possible support removed from me and was on my own. The only thing that kept me going was the thought that once I had finished my A levels and moved to uni, things could only improve (the fact that they didn't is something I'll elaborate on later).

Mental health professionals weren't the only ones who failed me.  When I was 13 and I was "found out" for cutting myself, I was told by family members who were meant to be there to support me that I was a "miserable bitch" and that by being depressed, I was being selfish. These people should have known better, and have unfortunately contributed to many of the issues I have nowadays with accepting times when I'm feeling low. I end up hating myself because of it. Incidentally, I really wasn't being selfish. The exact opposite, in fact. The reason I resorted to self-harm is because I'm inherently a very introspective, introverted person and it's not in my nature to lash out at others or dump my anger on them. I took the anger out on myself because I had nowhere else to put it and no way of dealing with my painful feelings. It's not like anyone else was making an effort to understand, be compassionate or help in any way. I was just made to feel shame for feeling so sad. I remember when I was 15 and feeling really depressed one day, my form tutor noticed and actually shouted at me, telling me to "stop feeling sorry for yourself".

When I was 18 and in sixth form and my self-harm reached its worst, I was literally covered in cuts and there was barely any normal skin left on my arms. My head of sixth form noticed and was horrified, said I should admit myself to a psychiatric ward, excluded me from school for several days and phoned my mother and told her, leaving me to deal with her anger at home with nowhere else to go. The fact that I was constantly faced with anger, disappointment, frustration and disbelief at my illness was utterly unhelpful and the worst thing you can do for someone in that situation.

Back when I was 16 and pursuing help from the NHS for the first time alone, I went to my GP and declared how miserable I was. She asked about my situation at home which I explained to her, and she concluded that because my home-life wasn't ideal, my feelings of depression were situational and therefore untreatable and would get better by themselves. She gave me a leaflet which was quite frankly appalling in its understanding of depression - it said that there were two different types of depression, situational and chemical. Situational depression wasn't actual "real" depression, you were just feeling a bit down about your circumstances. Chemical depression was the only "real" one and the only one worth treating. I was made to feel as though what I was feeling wasn't real and that it was unjustified. There was no understanding of the neuroplasticity of the brain and how long-term situational depression can actually be chemical depression because your brain chemistry has changed. When aforementioned doctor handed me that leaflet, she dismissed me with "so yeah, I can't actually do anything for you. Bet that feels rubbish doesn't it?" - well yeah, funnily enough. I went into completely despondent mode following that appointment. Still, I persevered with seeing other GPs in the surgery and eventually after being turned away by quite a few, I saw one who believed me/ would treat me. However, she just nonchalantly printed off a prescription for Prozac - she made no effort to actually make a treatment plan for me. Medication should always be prescribed alongside talking therapy. You should not just be given some pills and left to get on with it by yourself, that's not what they're for. They're there to give you a bit of a boost and to assist you as you learn to help yourself get better with talking therapy. Essentially medication is like a band-aid - it masks the unpleasant feelings and is aimed at helping you remember what it's like to feel a bit more normal mentally, so that your brain can get into the habit of doing so by itself again. Medication should not be prescribed as a treatment in itself without trying other alternatives, or on a long-term basis with the patient subsequently abandoned. But that's what happened to me. Admittedly I did have an appointment every few weeks with that GP to check how things were going but we didn't really cover much in those appointments. It was "how are you?" - "feeling a bit down, still" - "okay, let's try a different medication" and I would be switched to a different pill. Just like that. And in the mean time I was just left to get on with it.

The worst medication I experienced was Paroxetine (common brand name Paxil). It made me feel completely and utterly empty and sadder than I had ever felt before. I got *extra* suicidal on that. So I went back to the GP and she told me to come off it cold turkey. COLD TURKEY. Anyone who knows what it's like to take anti-depressants long-term will know that it is COMPLETELY unsafe to just stop taking medication like that. Some people don't suffer horrifically, but others do, and I did. I suffered from severe discontinuation syndrome and was basically curled up in a ball in bed crying for a week. I barely moved, ate, anything. I was a shell. In the end I was taken back to the doctors and put back on Prozac - and so it goes.  Nine years later I'm still on anti-depressant medication and have been unable to come off it without mentally crashing. That is how addictive it can be for your brain and why it should be incredibly closely monitored by doctors. They don't know nearly enough about it and most of my medication control has been done by me and through my own research.

Since I was 16, care for those who are severely depressed seems to have improved a bit, but not enough.  When I was feeling suicidal a couple of years ago, I remember going to my GP numerous times about how low I was feeling. When I had literally got to my wit's end and I had an urgent appointment with her, she went through a lot of questions with me. I don't remember most of them now, but one of them was "do you have any desire to hurt anyone, particularly children?" as though being depressed somehow made me a horrible person, and also that was the only thing that could make me mental enough to need help. Apparently you need to be an arsehole to be taken seriously. Anyway. I was referred to some sort of care in the community team and sent to be assessed by a psychiatrist either the same day or the next day. I had to get myself to the assessment centre (which was a bit of an issue when I just wanted to run out in front of traffic - no care was taken to make sure I could get there safely by myself). I was assessed by a psychiatrist and some sort of trainee psychologist (both of whom were nice enough), asked how I was feeling and asked about my background. This was for them to see whether I needed to be admitted to a psych ward or not. (I was actually so sure I was going to be that I had packed a bag and everything.) After about an hour of talking and telling them about how I had been feeling this way since I was FIVE YEARS OLD and had never had any adequate help for it, that it always came back to the same thing of just existing and not living and wanting to die, they then just discharged me. That was it. No follow up help, not even a letter from that team to my GP. I had made it clear just how desperate my situation was, that I was living alone and had no friends or family around to support me and that I was suffering from chronic physical illness on top of chronic mental illness, but nope - apparently that's not enough reason to be given genuine help. I was incensed and the anger about the lack of help YET AGAIN just made me want to die all the more. All that happened is that I was put on Mirtazapine and told to come off the drug that I had been on before, Duloxetine.

Around the same time, I was struggling one night and close to doing something awful, and phoned the out of hours number I was given for mental health by my GP. I was spoken to by a nurse who was utterly useless - she just suggested either going to bed (as I'd "feel better in the morning") or having a nice cup of tea. She also reassured me that her daughter feels sad sometimes, too. ARE YOU FUCKING JOKING? Is that your idea of mental health support!? I was disgusted and left feeling even more upset and helpless by the phonecall but was not especially surprised, it was as useless as all the other support I'd been offered. It just seemed to confirm to me that I was never going to get help and that nothing was ever going to get better.

As with one of the patients whose case was shown on 999: What's Your Emergency? I have always been made to feel as though, even at crisis point when I feel like I'm completely losing control, I'm not quite mental enough to be institutionalised or considered for serious help. The times when I've felt suicidal, I've not made any particularly serious attempts on my life because I care too much about the people I would hurt if I was successful, not because I wanted to be alive enough to not go through with it. I've also never been violent or abusive to anyone, again because it's not in my nature (even at my worst the most I've ever been is irritable and short with people) - but it's hard to get people to take you seriously unless you lash out, which is worrying.

After that, the only help I was given was that I was referred for a group course of Cognitive Behavioural Therapy (not even 1:1!). Basically every week I had to go to a session where "mental wellness advisors" (or whatever they were called - something along those lines. It was hugely patronizing) gave us very common-sense based CBT tips. For example, it was stuff like "if you have a worry and there's nothing you can do about it right at this moment, then stop worrying about it" - "perhaps give yourself an allocated TIME to worry, and then outside of that time, just stop thinking about it." It was completely fucking useless and not even related to the issues I had. CBT works on the basis that you have concrete unhelpful thoughts and conscious anxieties that lead to the feelings that you end up with - but that's hardly ever how it's worked with me. Yeah, sometimes it does, but equally sometimes I just wake up feeling like I've been swallowed into a black hole for no apparent reason. I told my GP that CBT was useless for me but certainly in the Bristol area, that seems to be all you're offered. If the group CBT sessions failed, I was allowed to have 1:1 CBT sessions apparently. Ooooh, because that'll make all the difference (sense my sarcasm). Bearing in mind I'd had all sorts of therapy since the age of 13, including CBT, to no avail. (Just to clarify I don't think CBT is useless. It does help some people greatly, just not me. It's important to remember that different things work for different people.)

Following the pathetic attempts on the NHS's part to "help" me, I realised that the only person that could really make a difference was me.

I did research into what can help with depression and decided I would give psychotherapy a go, although clearly I wasn't going to be offered that on the NHS (I did ask). So I had a look around for the cheapest possible psychotherapist I could find and have now been seeing one since May 2012. At £100 a month it's not like I can really afford it considering I'm on benefits, but I decided that my mental health was something worth making financial sacrifices for. It's good to have someone to vent to, especially who is impartial and can give you their slightly healthier perspective on things, but ultimately it's not going to cure me. I don't think it's ever going to make me completely better to be honest. I think I am ALWAYS going to be prone to low moods because I've always been that way. I've also been brought up with many unhealthy attitudes to things which I can't just change - they're ingrained, and the only way I can change them is by experiencing new and healthy versions of the situations which have led to the unhealthy attitudes (if that makes sense). For example, I can try and override the neurological patterns that have occurred as a result of unhealthy relationships by experiencing healthy relationships and realising that a lot of my previous feelings and thoughts are redundant and not how the world works if you're actually surrounded by the people who are good for you. It takes a bloody long time to fix that shit, though.

I also decided to try coming off anti-depressants because I don't think it's helpful to have your emotions completely flattened. Yes, medication can help you avoid crippling lows but since medication also, at least for me, flattens everything else and makes me completely apathetic, it just didn't seem worth it. I'd rather feel some bad things than not feel anything at all. Medication made me feel as though I was existing and not living. I've also experienced a hell of a lot of functional and cognitive problems which have only got worse since the age of 17 or so - and considering I was put on anti-depressants at 16, I have to wonder about their potential responsibility for some of it.  I've been gradually reducing my medication for over a year now - I need to do it ridiculously slowly though because I seem to be very sensitive to dosage changes. Since they don't do Duloxetine in less than 20mg capsules, I've had to actually open up each capsule I take and count out the little beads inside O_O no word of a lie. I do that every single day. I started out with 290 little beads per caspule, and am now down to 40. The last part is the hardest as far as I'm concerned - I seem to be even more sensitive than ever to changes I make in the dosage at this point and last time I reduced too much at once, I had a bit of a blip and a lot of crying and misery was involved. Not pretty.

I've realised that although I seem to have a natural pre-disposition to depressive phases, I'm also the way I am because a lot of bad experiences that have left their marks on my brain and affected how it processes things. The neuroplasticity of the brain means that experiences do literally influence the chemistry in the brain, and as a result shape your future thoughts, feelings and responses so it's important to "re-wire" it if it's faulty. So I feel like most of my journey to a more mentally healthy life has involved learning to realise that I am worth just as much as anyone else, that I owe it to myself to make decisions that benefit me, that I am the only one who can help myself. So I try and do positive things for myself all the time and aim to feel like I am on an onward trajectory with my life. Psychotherapy has benefited me in that it has helped me to see where negative thought patterns and behaviours have originated, why they're wrong/ unhelpful, and how I can change them in future. It's also caused me to look at other people's responsibility in how my life has been, which has been very hard. It's been difficult for relationships with people not to be affected because I look at people's past actions towards me in a different way now, and realise when they were wrong and how it affected me. That's something I just need to work through.

Nowadays I don't suffer with mental health issues anywhere near as much as I used to. Because of my desperation to get better and my efforts to be proactive and help myself, I am in a much better place in my life than a couple of years ago when I had my last major blip. Of course I struggle every now and again, sometimes feel like nothing is ever going to get better, that life is pointless, etc. That's always going to happen as far as I'm concerned. But it's important to focus on the good in between and how I can build upon that. I don't see my life in the context of one giant uphill struggle against depression any more. I rarely think about it unless I am actually having a bad day or am reminded of it by something I watch.

I guess these days our lives just seem like an inevitable chain of events - I know mine did. School, GCSEs, A levels, uni. I then always assumed I would get a good job and that would be that - life sorted. Never did I anticipate that physical illness would introduce itself into the mix and actually leave me incapable of working after uni and that I would have no life at all for a long time (and that would make my depression worse). I never thought that I would have to actively pursue an actual life, I had always assumed things would come to me and just sort of roll out in front of me. Lol at my naivety. When I finished uni in 2011, I decided to stay on in Bristol (I felt it was the best idea for my mental health to get away from the bad memories of where I grew up, which is a shithole with nothing to offer anyway). However, the few friends I had made at uni had moved away and my boyfriend at the time (now ex) was living up north so I didn't have him around either. For a very long time, I was extremely isolated and had no social life (most of my social interaction was just absorbing other people's social lives via me sitting and reading in a coffee shop, or saying hello and goodbye to checkout assistants). It was no life at all really. After a while I decided enough was enough and started to really consciously try and meet people. Now I actually have a life that I enjoy, and which I occasionally look at and think "shit man, I did that all myself. Go me!" - I guess one way of looking at it is that I used to be very passive and now I'm *bordering* on assertive (which doesn't sound like much progress, but believe me when I say it is).

Now I have a really lovely set of friends who I've chosen to have in my life (friends are the family you choose, etc); a wonderful and supportive boyfriend who brings a level of contentment into my life that I've not had before and makes me feel things I didn't think I was capable of; and I'm gradually trying to build up the confidence I need to get back into working (that's going to be a hella-long road, but hopefully worth it). I also have much more positive thought patterns than I have ever had before. They're not perfect, I'm still a cynical cow a lot of the time but much less so than previously. I'm much more willing to try new things and say "yes" instead of "no". I try and remove myself from negative influences and things I am aware cause me pain because what's the point in pursuing that stuff? There are lots of things I could list that have improved drastically.

Again, the genius of Hyperbole and a Half

One thing that epitomizes these improvements is that I even went to New York for almost 3 weeks on my own in March this year, just because I could. That was a pretty huge achievement and it was entirely for myself. I even went to Niagara Falls which I've wanted to see my entire life and just spent the day there moseying around at my leisure. That was one of the best days of my life purely because it was something I had always wanted to see, it was as amazing as I'd hoped, and I'd gone and done it completely by myself. I hadn't backed out through fear like I had with other things for most of my life.

A shameless selfie on the Empire State Building

 One of my pictures from Niagara Falls which I guess has become a disgustingly clich├ęd yet appropriate metaphor for my life significantly improving

Of course there are lots of problems that persist. I get angry at silly things for no apparent reason, and at the time those things seem to feel like the biggest, most annoying things in the whole world. Sometimes I really struggle to control how irritable I feel and am quite short with people. I still don't like myself that much and need to work on my confidence. My anxiety about being stuck in a situation and not being able to get out of it is still there. I am still a die-hard people-pleaser and don't know how to stand up for what I want as opposed to just going with what other people want. I struggle with my motivation (although I imagine this is fairly understandable, having not done anything in particular with my life for the past 2 years). I still watch myself in situations from outside myself and wonder what people are thinking of me. Sometimes I'm sad for no reason. I never feel like I really know who I am or who I want to be and am always looking at other people thinking "maybe I should be more like them". I feel like my opinions need to be validated by others before they are justifiable. I struggle to be interested in and enjoy things. Moreover, my physical health problems limit what I can do which is extremely frustrating and often is the trigger for me slipping into a depressive phase. You get the idea - I could go on forever about the things that I need to work on. My point is I have a hell of a long way to go. 

But anyway. I hope this (extremely long and verbose) post is demonstrative of the fact that no matter how bad things get, THEY CAN IMPROVE. And that if you're suffering from mental health problems you're not alone and there's nothing to be ashamed of (although I'm still struggling with that aspect myself). Help is available, but unfortunately you might have to pursue other routes than the NHS. You also have to rely on yourself much more than you might like (which I know when you hate yourself and don't really want to be alive is extremely difficult). Sometimes it won't feel like it's possible and like life is against you and is always going to be shit but you just have to remember that there ARE little rays of light that shine through all the bad and that you never know what is around the corner. Think of all the little things you've experienced that you wouldn't have if you had given up when you initially wanted to.

I remember writing in my diary when I was about 13, "I hope I don't make it to my 16th birthday. I hope I pluck up the courage to kill myself before then", and I think I went on to list all the people I would like at my funeral. Well, almost 10 years on from the age I didn't want to reach, I've grown as a person more than I could have ever imagined - I am quite proud of where I am and I just think of all the things I've experienced and achieved since that diary entry.  Turns out I'm pretty glad I found the courage to carry on rather than give up.

(TL;DR: I was sad once. I got a bit better.)