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Now You See ME

This week is ME Awareness Week and today is ME Awareness Day so I’m here to raise awareness of the condition that I’ve suffered from for 15 years, since I was 9 years old. ME is hugely misunderstood, judged and stigmatised and so much more research needs to be done so that people like me can hopefully one day be cured. You can read more about my personal journey here.

ME is often dismissed, discounted, diminished and ignored. People pass it off as a non-serious condition that is preferable to many other diagnoses but recently it has come to light that many people who have other, arguably more serious conditions, would rather have those than ME because of the lack of understanding and treatment. When you’re diagnosed with MS people believe you, they have sympathy for you and don’t tell you try harder. With arthritis they’re aware that they may not be able to see the pain, but nevertheless if you say things hurt, there’s no need to question it. If you’re diabetic and you say you feel faint because your blood glucose levels have changed, people will do what they can to help. With ME you’re regularly questioned, tested, pushed, encouraged and often bullied. You constantly feel like you have to prove yourself and prove that you are as ill as you’re saying you are. Many people think we’re lazy, or just need to try harder but actually ME mostly affects people with a Type A personality who are extremely motivated and determined and it often takes us years to adapt to the condition and finally learn to pace ourselves so that we don’t constantly relapse.

Many people think that we’re making it up but I can promise you that we’re not. No one in their right mind would make up a condition like this and stick with the lie year on year while their life and opportunities pass them by. Anyone that knows me will tell you that I’m one of the most motivated and determined people they’ve ever met. They’re shocked that despite all of the excuses I could’ve made because of my condition that I still attended school, college and university as much as I could and got as many qualifications as possible, against the guidance of doctors and teachers. I’ve never used my condition as an excuse to perform at a lower level than I’d have expected of myself if I was well and everyone I’ve ever met with ME is the same.

This condition robs people of their lives. It takes away years and often decades and many of us never fully recover. People diminish it and suggest that we’re “just a bit tired” and that “everyone feels like that” and often then go on to joke that “maybe I’ve got ME”. We’re often dismissed when saying how bad we feel and are told “well no one ever died of ME” but that’s now known to be untrue. People have and are dying of it. It’s very rare but in the most severe cases people are dying of ME and having it listed as their sole cause of death on their death certificates. In those cases, their spinal cords are inflamed, their organs are failing and their bodies deteriorate with every new stimulus. So little is known about this condition and while promising studies are published every year suggesting a newly found cause, treatment or cure, nothing ever seems to come to fruition and help the masses. We still don’t know the cause or even if everyone with a diagnosis of ME has the same condition. In my view, it’s almost certainly a cluster of similar conditions that vary in severity and symptom-type and probably vary in cause and therefore treatment too. There are no treatments that help the majority and there is currently no known cure. There is no accurate prognosis because the condition varies so much from affecting some mildly for a couple of years and them making a full lifelong recovery, to those who are bed bound and hospitalised who eventually die, and everything in between. There is no blood test that can be used to confirm ME and diagnosis is still made through a process of elimination meaning there is a high likelihood that ME is indeed a cluster of conditions all of which have currently unknown causes.

Our condition is invisible to all but those closest to us. If you met me in the street you wouldn’t know that I have ME, you wouldn’t see the pain in my joints or the insomnia that keeps me awake til the early hours. You wouldn’t see the nausea, the headaches, the constant aching, the brain fog. No, unless you live with me, you’ll never see my condition. Even when I was wheelchair-bound I was accused of faking it because I could still walk short distances or I “didn’t look that sick”. Those closest to me can see the subtle changes and know all too well the white-grey colour my skin goes when the fatigue hits, the yellowish tinge I get when I’ve overdone it, the dark grey circles under my eyes that last for months at a time thanks to not remembering the last time I got a decent night’s sleep. Unless you look closely you won’t notice the tremor I’ve had in my hands since I was 15, or the fact that my legs feel like lead if I stand up for too long without moving, or my eyes glazing over when my brain is simply too tired to comprehend anything anymore. You can’t see my condition, but it doesn’t mean it’s not there and it doesn’t mean it’s not real.

Invisible illnesses are everywhere you look and often those of us with them are hidden away because we’re too ill to function outside our homes but when you see us on a good day and managing to smile, enjoy ourselves and have a rare day out, please don’t question us or assume that we’re making it up. You don’t know what it’s taken for us to be able to go out that day, the time we’ve spent resting, the help we had to have beforehand, the days afterwards that we may spend in bed because we’re so burnt out. The nature of ME means that we often pay the price for overdoing it a couple of days later so we’re forever doing too much without realising because our bodies don’t react immediately. This means we can do far far too much and then pay for it for days, weeks or even months afterwards. You may think we’re faking being sick but what we’re actually really good at is faking being well. We’re pro’s at putting on a happy face and ignoring the pain and fatigue and fighting our way through it so that we can attend important events, write that last essay or just be reminded of what doing normal things feels like. But you won’t see us when we relapse, when our legs give up and we have to crawl because they simply won’t hold our weight, when we have to be helped to bathe because our arms aren’t strong enough to wash or brush our hair, or the fatigue is so bad that we no longer have the energy to cry. You don’t see us when we need help getting dressed, or have to sleep in the lounge because we can’t climb the stairs, or those who are sickest who are hospitalised for months at a time and tube fed in blacked out rooms because all stimuli causes them physical pain. ME is not “just feeling tired”, it’s a cruel condition that is utterly debilitating and it needs so much more research to be done so that a cure can finally be found.

You may not be able to see my condition but I hope that Now You See ME.

A Day in the Life – 10th May

Just to give you all a bit of background about this post – The charity Rethink Mental Illness recently advertised for people in the UK with a mental illness to participate in a nationwide project that they are running called A Day in the Life. They chose 4 dates over a year, 1 in each season, for all of us who’ve signed up to blog up to 700 words about our day. We were asked to say what we did that day, what went well and went badly, and what helped our mental health and what made it worse, so here’s mine for the third day, the 10th of May. Here you can find day one and two.

Today I woke up late. Only by an hour but it always throws me off kilter as I like to keep to my routine. I got up and weighed myself which I do every morning as I’m on a diet. I’d put on weight, only a little but still, my heart sank. I showered, dressed and made myself a cup of tea. I’m on the 5:2 diet, though in my case it keeps turning into the 4:3 diet because I struggle to lose weight when I’m so sedentary due to being virtually housebound. Every time I gain weight I get anxious and feel like I’ve failed. This is the instant reaction thanks to the leftovers of an eating disorder that I had when I was 18. I try really hard to not obsess about my weight and food because I know that’s my passport back to anorexia but it’s hard to keep those thoughts at bay, particularly when I don’t have much else going on in my life to distract me. I’d already decided that today would be one of my low calorie days this week so I drank lots of water and tea throughout the day and waited til dinner to eat. I kept myself busy enough and tried to ignore the fact it’s a weekend which means my boyfriend is working and there’s nothing decent to watch on tv. Weekends are so boring when you’re home alone all the time.

Anyway, I did what I could to keep myself busy. I’ve set up a new blog which I published today which I’m using to post reviews of adult colouring books. I’ve found them to be one of the few things that really helps keep me calm and my mind occupied and when the craze exploded a couple of months ago I was really pleased to see that so many other like-minded people were popping up online. It’s hard for me to choose which books I want to buy because I can’t leave the house and flick through them in bookshops and so I searched online for some reviews but couldn’t find anything detailed enough to be able to commit to buying them (money’s tight so the last thing I want to do is waste it on a book I don’t like). I’m reliant on the “look inside” feature on Amazon but many books don’t have that and it’s just not the same as going and looking at it yourself. So, I came up with the idea to contact publishers and ask if I could be sent copies of their books to review so that I can give an accurate portrayal to all of my mentally ill readers on my blog, particularly those who might be housebound and so far, a couple of them have agreed. I spent a lot of today colouring in one of my new books and then writing and posting the review which can be found here if you’re interested https://colouringinthemidstofmadness.wordpress.com/2015/05/10/the-cant-sleep-colouring-book-a-review/

I spent the evening having a lovely chat with my mum on the phone, putting the world to rights and having a really good catch up which really cheered me up and then had a delicious dinner and spent the evening watching tv with my boyfriend. I was very distracted and found it hard to focus on things because I’ve got a lot going on at the moment that I need to keep on top of with contacting publishers as well as lots of crafty projects and doctor’s appointments and other things I’ve probably forgotten. I felt quite wired in the evening but did manage to settle once I’d sent some emails, blogged and done some more colouring so I’m hoping I’ll get to sleep at a decent time tonight.

Colouring, blogging, my mum and boyfriend helped my mental health today. Boredom, as usual, was my nemesis as well as memory problems and general anxiety but I did ok and I kept on top of it all. The battle begins again tomorrow.

Physical Illness vs. Mental Illness – Why You Should be Outraged

Today I’m feeling anxious, I have been feeling increasingly so for the last couple of weeks because tomorrow I have an assessment with a psychologist. I was originally meant to have the assessment in December but wasn’t well enough to attend and moved it to the end of January hoping that I’d have improved by then. Sadly, it got cancelled with 3 days’ notice by the psychologist because she was striking that day. It got postponed again until after I’d finished withdrawing from my medication and hopefully improved. It’s now tomorrow. In some ways I have improved – I cope better when I have to travel in cars, I can go to the shops a little more often and stay out a little bit longer before the panic sets in, occasionally I even go out and don’t feel panicky at all. However, I feel incredibly anxious about tomorrow.

I’ve been fighting for this assessment since September and was originally deemed “unsuitable” but was never told why. I fought and explained why I should be assessed for therapy and stated that as medication clearly doesn’t work, psychological therapy was my only hope other than spontaneous recovery which we can hardly rely on happening. Eventually my psychiatrist gave in, seemingly because he could no longer justify saying no and I was sent an appointment.

They keep refusing to do my assessments by phone even though I’ve already missed one face-to-face appointment because I got so anxious that I couldn’t move and they keep telling me to “just try” and “keep pushing yourself”. I push myself every day. I have almost no support from the health services now and was really unwell for months due to withdrawal from my medication which wasn’t monitored because I still don’t have a new psychiatrist. I’ve now not been seen by a doctor since the 3rd of September and am still yet to be allocated one – it’s been 7 months.

When you’re suspected of being diabetic doctors don’t just make you eat sugar in front of them and then pump you full of insulin when it’s clear that your body isn’t processing it and is rapidly killing itself. Why then must I keep “pushing myself” to go to appointments so that they can see “just how anxious I am”. Why am I essentially being tested? Most of what I say and do currently seems to be skewed by doctors and psychologists who just use it in whatever way they like to back up their own point. I’ve attended 3 appointments so I was well enough to get to those, why not the latest appointment? I explain that I’m so anxious about these appointments that I stop being able to sleep for a week beforehand and my IBS flares up. These appointments are making me more ill but I’m expected to attend them in order to get treatment. I have to go to assessment after assessment with healthcare professionals with different job roles and titles and so far all I’ve been offered is Group CBT sessions. I regularly go weeks at a time without being able to set foot outside my front door so how is it feasible to expect me to do this? Asking me to “just go outside” is like asking someone with a broken leg to walk on it with no plaster cast. They can want it as much as they like but as soon as they try to put weight on it the pain will be unimaginable and their leg will buckle potentially causing more damage. Wanting your bones to fuse together doesn’t mean that it happens and it’s exactly the same with my anxiety. I hope, wish and even pray every day that I will be able to go out and do all of the normal things that I took for granted but that doesn’t make me any more able to do them than walking on a broken leg.

Patients having a lump investigated are told what the possible outcomes and diagnoses may be and in time are told what treatments may be available to them. They are given a diagnosis as quickly as possible and then told about treatments, prognosis and available support. They are not kept in the dark about these things and are allowed to make decisions about what they feel would help them best and how they want to proceed. I’m afforded none of these luxuries as a mental health patient. Over a year in I’m still yet to be diagnosed, I’m still having to go to assessments and have still not received any psychological treatment. I’ve taken myself off the medication that was making me worse because I have no doctor to discuss it with or to advise my withdrawal so I did it alone. I have been in and out of the mental health system since I was 16, I have a psychology degree and until a year ago I worked in a psychiatric inpatient unit. I know my stuff when it comes to what therapies are available and whether or not they’re likely to help me. I’ve had so much CBT that I could almost certainly deliver low-level therapy with no need for further qualifications and while it’s a great therapy, it hasn’t worked for me and there’s no reason to think that would be any different for this anxiety disorder.

In 2011 I received Cognitive Analytic Therapy which really helped me at the time and is the therapy that I believe in most to be able to treat my current difficulties. I have been asking my psychiatrist since September to refer me for CAT and have been categorically told that it IS offered by my local NHS Trust and within my area so I fought for it for 5 months. I’ve asked more than one health professional on numerous occasions whether it’s offered here and whether the therapy assessments I’m going to are assessing me for CAT or just CBT and have always been told that they are. That was until January when I phoned the day hospital and the person I spoke to immediately said that the Trust DO NOT offer CAT. I was shocked at this and nearly burst into tears. I told her that both my psychiatrist and psychologist had assured me that it was and that I was being assessed for it so she said she’d check. The psychologist then called and finally admitted that CAT is offered by the Trust but that there are no NHS funded therapists in our area and due to my condition preventing me from travelling, I would not be being assessed for it.

I’m now in a very difficult position where I’ve been lied to by the very people that I’m meant to trust. I have to open up to these people about my deepest darkest fears and tell them about all aspects of my personal life. I’m meant to trust in them to tell me the truth and to work for my best interests and to advocate for me when discussing my treatment in meetings. But they’ve lied. They’ve lied over and over again, when I’ve asked them direct questions about whether or not I’m being assessed for this therapy. It feels like I’m being conned. How am I meant to persuade myself to go to an assessment that I’m terrified of attending when it looks increasingly likely that I’m just going to be offered Group CBT or sent back to my GP. I keep asking what provisions there are for people who are housebound and I’m still yet to get an answer. I have explicitly stated that I do not want to be discharged back to my GP, the same GP who put me on medication that I should never have been given in the first place due to previous bad reactions to it and who told me to “just stick with it” and more worryingly to “try harder” and “think more positively” while I deteriorated thanks to the horrendous side effects. If I can’t attend tomorrow though I may well be discharged back to their “care” meaning I won’t get any treatment.

I know that I’m one of the unlucky ones for whom medication is not the answer, or even part of the answer. I know that I’m a nightmare patient because my conditions are treatment-resistant and complex but I wish they’d been straight with me and not lied. If CAT isn’t offered in my area and I’m not well enough to travel out of area for it then that’s fine. I don’t like it but it’s not unreasonable and I understand that particularly in this economic climate there are limitations on healthcare provision. I’ve directly asked over and over again and been assured that I was being assessed for it. I’m left wondering what would have happened if I’d been well enough to attend the original assessment? Would I have been told I was “unsuitable” for CAT despite being suitable for it when I was assessed in 2011 by a different NHS Trust? Would they have just tried to palm me off with Group CBT and then said that I was “refusing treatment” when I declined due to not being well enough to attend? Would they have ‘fessed up and said that actually they’d got me there under false pretences and that CAT isn’t offered? I’ll never know.

I am not alone in being treated in a sneaky, underhanded way. Countless patients with mental health problems are treated like this every day. It simply wouldn’t be allowed if I had a physical condition. I wouldn’t get put on medication without a diagnosis. I wouldn’t have to prove myself, my tests results would speak for themselves. You may be thinking that you can’t test for mental illness and biologically that’s currently true. I can’t have a blood test and be diagnosed with an anxiety disorder but there are countless psychometric tests that measure anxiety levels, depression scores and every other psychological condition under the sun and my score on the anxiety tests is through the roof. There is no mistaking or denying that I’m severely affected and that my quality of life is hugely diminished by this condition and the test results show that. And yet, I’m still expected to prove it by attending the appointments and for some reason, unknown to me, not being able to attend an appointment because I’m so anxious that I’m not able to move, doesn’t prove that I’m even more ill than they thought and therefore in need of urgent treatment. No, my inability to attend appointments just seems to elicit threats of being discharged back to my GP and receiving comments about not trying hard enough or putting in enough effort. This would be a disgrace if I were physically ill but it’s widely accepted when mentally ill – You Should be Outraged!

N.B I’ll post soon about whether I manage to attend tomorrow and what the outcome is.

A Bad Week to Have Depression

Well, what a week it’s been for mental health, particularly depression, in the media. It’s been a very challenging time to be depressed when the condition has been so firmly under the microscope for all the wrong reasons.

We started off with the terrible news that a Co-Pilot for Germanwings had deliberately crashed a plane killing all passengers and crew. Within 48 hours there were revelations about his mental health and dramatic headlines including “Suicide pilot had a long history with depression. Why on Earth was he allowed to fly?” and “Madman in cockpit”. This was all well before any investigations had been carried out and the news stories were written with a huge amount of guesswork and lots of assumptions being made. Numerous articles have since sprung up suggesting that anyone with a mental illness shouldn’t be allowed responsibility “just in case”. Good luck filling jobs when 1 in 10 of us have the condition. This article written by Piers Morgan just epitomises how damaging taking the actions of one person with a mental illness can be with a ridiculously dramatic headline to boot Depressed pilots on medication for mental illness should not be flying passenger planes. That’s not insensitive – it’s protecting lives.

Following this, there was a huge backlash against the way the media had reported Andreas Lubitz’ history of depression. This backlash came from bloggers, sufferers and mental health charities, all condemning the way it had been reported. Mind issued a statement to the media, found here, in which they asked the media to report mental illness more sensitively and not be quite so simplistic or assumptive while facts are still emerging.

We then had the delight of reading Katie Hopkins’ very public views and opinions on depression which spread like wildfire through the Twittersphere. Her comments included – calling suicidal people “Attention seeking b*stards”, that “There is no stigma around depression. There are only realists and people pissed off because their train is delayed.” and this particularly archaic view “To be diagnosed as depressed is the holy grail of illness for many. The ultimate passport to self-obsession. Get a grip people.” If you can stomach it, more can be read here. I think we’re all well aware now that this woman is a professional troll who loves nothing more than to identify a minority/vulnerable group and then make sweeping generalisations and wild and outrageous claims about them just to get a reaction from the public. However, when you attack the depressed, you’re doing a very dangerous thing, particularly in the aftermath of us being dubbed by the media as unable to work, unstable and dangerous. I’m sure the majority of the depressed community were left reeling following the media headlines and stories after the Germanwings crash but jumping on that bandwagon and attacking us while we’re down is spineless and vile. Katie Hopkins has clearly never experienced depression, so why she thinks she should have an opinion on the condition I don’t know! She states herself that she suffers from epilepsy, I do not have epilepsy and therefore wouldn’t go around publicly posting tweets about something I not only don’t have to live with, but also know nothing about. Depression is characterised by low self-esteem and low self-worth and also suicidal tendencies. Attacking depressed people and suggesting such untrue and offensive things is not only damaging and hurtful (I spent part of Sunday crying at what she’d written), but also very dangerous when the media has already suggested that we should not be trusted or given any responsibility or power which feeds right into many of our own (incorrect) beliefs about ourselves.This is far more likely to increase suicide rates than elicit spontaneous recovery!

With 1 in 4 of us experiencing mental health problems at any one time and a lifetime prevalence of 1 in 3, people who currently aren’t mentally ill but are sticking the knife in and spreading stigmatising stories and information need to be very careful. If it’s not you that gets ill, then it probably will be your mother or father, or one of your two children, or one of your two best friends. We now live in a society where mental illness is so common that we all live within its glass house and should therefore be very careful about throwing stones. It only takes a few negative events in close succession to take down the strongest of people who never “seemed like the type” to get depression. Because, much as many health people hate to admit, depression isn’t about weakness, it’s not about a “type” and it’s not even about your circumstances. Depression is the most common mental illness and spans all ages, genders, races, economic backgrounds, education levels and careers. There are variances in prevalence within these groups with people suffering more hardship being more likely to get depression, but the rich and highly educated are by no means immune. So wake up, smell the coffee, and thank your lucky stars if you’re not currently one of the 1 in 4 people like me who have to struggle every day but still manage to function as human beings. We’re perfectly capable of holding down jobs, of having responsibility, of doing just about anything that a person without a mental illness can do. Sometimes, we might need extra support, or a break, or some treatment but we’re just as capable of being teachers, nurses, pilots, mental health workers, parents, friends and politicians as you are. We’re not dangerous, we’re ill, there are a few mentally ill people who do evil things like crashing planes, just like there are a few “healthy” people who do the same. Nothing to do with health!

When I talk to people about stigma and say that I campaign against it and tell my story so that others can gain understanding of what it’s like, I’m often greeted by responses about how stigma has reduced and that now is the least stigmatised time to be mentally ill and people even suggest that stigma about mental illness has ended. This week in the media has shown just how far we still have to go and just what a huge step backwards we can take when one man’s actions are attributed to a misunderstood condition. Andreas Lubitz committed a terrible crime whilst having the condition, not because of it. People who think that stigma is no longer a problem have hopefully had a wake up call this week and have seen that it is still rife and that while public perceptions are changing slowly over time, the media drag us all backwards by inappropriately reporting mental illness stories time and time again. For my dissertation for my Psychology Degree I investigated the effects of media reports on mental illness and came across some astounding statistics. Only 1 in 4 stories about mental illness in the media portray positive views and these stories are on average half the length of the negative stories. They also offer no disclaimers when reporting crimes committed by people with mental illnesses leading a huge amount of society to believe that mental illness causes violence. True crime statistics show that mentally ill people are less likely to commit crime than healthy individuals and that they are more likely to be the victim of crime than the perpetrator. I also discovered that reading positive information and facts about mental illness before or after reading a negative and stigmatising article only has a very very small effect on reducing stigmatic beliefs. This means that just reading positive things and hearing from people like me, who despite being depressed for 8 years, has managed not to harm anyone or commit any crimes in the process, is not enough to reduce stigma and that we therefore need to reduce it at source and stop printing such inflammatory and dramatic information that is not true or representative of a widespread set of conditions that affect up to one third of our population.

I’ll leave you with this – Mental illness does not make you dangerous, violent or any more likely to commit a crime. Do not believe what you read in the media and instead read the mental health charity websites where you can find out statistics about prevalence, crime, prognosis etc. The only people that depressed people are a risk to is themselves. No one I’ve ever met with depression has even considered harming anyone else, let alone crashing a plane. This has been A Bad Week to Have Depression but slowly but surely enough people like me will shout loud enough and the media will have to stop being so stigmatic in their approach to reporting news.

One Year On – One Year of Fear

This time 371 days ago I was interviewing for a job that I’d been trying to get for 9 months. It was a permanent role on the ward that I loved working on and meant that I would finally have job security, guaranteed hours, proper support and training.

370 days ago I was on top of the world after being offered the job. I was in work that day and the patients and staff were all thrilled for me and very excited that I was officially joining the team. I was filled with pride and excitement that I’d finally got to where I wanted to be and was one step closer to my dream career of Clinical Psychologist.

369 days ago and things weren’t as rosy. I felt strange all day. I was worrying a lot and felt a lot less confident in my ability to do my job and keep my patients safe. I started to doubt myself a lot and felt very insecure. In the evening I went out for a meal with my boyfriend to celebrate my new job and I deteriorated over the course of the meal. I couldn’t stop worrying and felt really on edge. I didn’t want to walk anywhere, even to the loo, because I felt like I was going to collapse and like everyone was watching me. On our journey home I was clinging to him and when a drunk sat opposite us on the train I could barely hold it together. I just couldn’t deal with it all. I burst into tears the minute we got through our front door and struggled to sleep that night because of all the worries going through my head.

The next day, 368 days ago, I got up for work and just felt paralysed by fear. I tried to work through it and make myself go in knowing that I’m obviously good at my job if I’d just been offered a permanent role but the fear took over and I had the first panic attack of what would soon be many and had to phone in sick.

Over the weekend I deteriorated further. I needed to do a food shop and simply couldn’t face doing it on the Saturday. I don’t remember the exact thought processes but I just felt unable to cope and unable to deal with that many people and pressures and how busy the supermarket would be. On Sunday I felt that if I didn’t go that day then I’d end up stuck indoors and frightened to leave. I don’t know why I thought that but it was a very strong feeling and I knew I had to try. It was awful, the train ride there despite only being 6 minutes felt like a lifetime and the shop was really busy. I got the bare minimum that we needed and more than once I almost abandoned my basket because I felt so anxious. The only thing that stopped me was the worry of what people would think if I just left it. I cried the whole way home and got stared at a lot by other passengers on the train who couldn’t understand why I was sobbing surrounded by shopping bags.

365 days ago I went to the doctors. It’s a 2 minute walk around the corner from where I live and I had to force myself to go because being outside was now terrifying. The noise, the brightness, the people. Everything was just overwhelming. I cried as soon as I started talking and was immediately prescribed medication and signed off sick for 2 weeks while I waited for the worst of the side effects to wear off and for the drugs to kick in. I haven’t returned to work since. The drugs didn’t work, the side effects never wore off. Neither did the following two medications.

I’ve been medication-free for just over a month and am still no closer to returning to work and my level of functioning has barely changed. I’m less physically ill now I’m finally drug-free but the anxiety is not shifting. I now realise that a huge amount of why I was feeling so bad was because of the side effects of the medications I was on rather than the condition itself. This has been very difficult to come to terms with – to know that for 11 of the last 12 months I’ve been made worse by the very thing that was supposed to be making me better. I still don’t have a diagnosis, I haven’t had a new psychiatrist allocated since mine left in October and I’m still not receiving any psychological therapy on the NHS. I’ve just been left to deal with this condition that has no name on my own.

Now my reality is that everyday mundane tasks are completely terrifying. I think back over things I’ve done in the past, things that were huge achievements like my degree, getting the job, moving into university miles away from home and it feels like a completely different person did those things. I think back to all of the small things I used to think nothing of doing like popping to the shops, going on the train to Brighton for the day, visiting my mum on the Isle of Wight, taking the bins out. Now, just thinking about those things makes me feel sick and tense. I can’t fathom how I was able to do them when I’m so frightened of everything now.

My existence is almost solely contained within the walls of my flat and my world has shrunk to be unimaginably small. The person I once was is (I hope) hiding, but it feels like she’s gone. All of the things I’ve done in the past, the small things right up to the huge things don’t seem to count towards my confidence because I can no longer associate with them because they no longer feel like something I did. I’m now the girl who’s scared of her own thoughts, who’s surrounded by wool and spends her days watching tv, crocheting and cleaning. I don’t even recognise the girl with the psychology degree who was going to change the world.

So here I am, one year on. One year and a week ago the world was my oyster and I felt excited about the future, my career, the lives I would try to help change. Now my world mostly consists of fear and distraction from fear. I’m not excited about the future, I’m fearful of it, I don’t know what my future will hold and it’s currently unknown whether I’ll get better, stay like this, or get worse. The biggest thing I have going for me though is that I’m determined, more determined than most and I fight, despite feeling weaker than I thought it possible to feel. I don’t give up and I carry on hoping. I try not to set time-limited goals because I fear failing and feeling even worse, so instead, I hope and I aim for things without setting a time limit. My hope is that my future will be normal, quite uneventful and that I’ll be able to recover, not relapse, and be able to help others because I truly believe that’s what I was put on this planet for. My aim is to get better and to stay well, to decrease stigma, to increase awareness and understanding of mental illness and most of all, to no longer be afraid to go outside and do normal things. Here’s hoping that one year on from now this will all just feel like a bad dream and I’ll be well, working and helping people, if that’s not doable then I just hope that I’ll be better than I am now and I’ll be able to look back and see the improvement. One whole year of fear has been exhausting and this has been one of the longest years of my life. I’m not sure I can face another year like this but at least I’m facing it medication-free and with a few really supportive people around me who cheer me on no matter how small the victory and cheer me up when the condition gets the better of me. Maybe this coming year can be One Year of a Little Less Fear!

Fighting for Small Victories

Yesterday was a really good day and showed me just how strong I can be sometimes. Despite living just 3 minutes’ walk away from my local shops, I’ve only been able to go into one 5 times in the last 6 months. I can only go in when I’m having a particularly good day and really managing to keep a lid on my anxiety and even then I really struggle and have always left without being able to buy anything. It’s hard to explain to someone that doesn’t have an anxiety disorder what it feels like but to me, leaving my flat feels like I imagine being forced to skydive would feel – completely life-threateningly terrifying. I’m not just a bit scared or nervous, I’m full-on terrified and so most days I simply can’t step outside my front door. On the days that I do manage to cross the threshold I usually have to have a task like taking the rubbish out so that I’m occupied for the first part of being outside.

Once I’m outside, things don’t get easier like many people assume they will. I don’t suddenly realise that I’m outside and I’m coping and can therefore go on coping, I have to take control and keep it so that I don’t get overtaken by a panic attack and this takes all of my focus. If a panic attack starts coming on then I usually feel like I’m going to collapse and my vision goes very blurred which then makes me more anxious because I don’t feel like I can safely get home and people often stare at me because I’m hyperventilating and crying. This is the point at which I’ll try to phone someone to calm me down, which is great if they answer, but I don’t have that many people I can call and they all work so often I just have to rush home as fast as possible and deal with it alone. Sometimes I get too far into the panic attack to be able to do that and then I have to sit on the pavement and wait til the panic attack goes. This majorly increases my anxiety each time it happens because I can’t bear making a scene and people looking at me.

The few times I’ve managed to be brave enough to go into a shop the anxiety has ramped up a notch. I feel trapped really quickly and feel like everyone is staring at me. My anxiety is centred around people having expectations of me and the possibility of me letting them down or failing in some way so the more people I encounter, the worse my anxiety gets. I often get paranoid and feel like I can hear their thoughts even though I know they’re almost certainly focusing on what loaf of bread they want rather than judging me but those thoughts are enough to make me want to disappear and escape. The further into the shop I go the more trapped I feel and I stop being able to focus and start to panic about how I can get out when there are people blocking the way. This is what has always stopped me buying something – I simply can’t face standing in a queue and not being able to just leave because I’ve got to get rid of the items I’ve picked up first.

This brings us to yesterday which I originally described as a small victory but the more I’m thinking about it the more huge I’m realising it was. Yesterday, I was itching to get outside having not been out at all for 15 days. The last time I went out was not a success because I managed to get into Co-op and then felt really trapped and had to leave and was so panicky that I had to be calmed down by my mum on the phone so that I could continue getting home without having a pavement incident. I took some rubbish downstairs and felt quite in control of the anxiety so started walking towards the shops. I decided not to go to Co-op because I find it so overwhelming so instead I walked straight ahead to the charity shop that I know sells wool. Luckily, it was empty and just had the two members of staff in so I went in to the back of the shop and started looking at the wool. I tried to really focus on the colours and picked up the two that I needed more of and then looked at the other colours just to keep myself occupied and not let the anxiety drag me out of the shop instantly. I picked up some other colours and took the wool to the counter and the shop assistant commented on how much I was buying and asked what I do with it so I decided to be brave and tell her that I make crocheted animals. She was really interested and instead of listening to the anxiety which was telling me to escape I focused on being normal and friendly and told her about it all and answered her questions. I left the shop and could feel my breathing getting faster and my vision started to blur but I put all of my focus into getting home safely and not having a panic attack – I wasn’t going to be that brave and push that many boundaries and then have it ruined by a panic attack. I went into Co-op and decided to not buy anything but have a look around just so that I could have a good experience. It was really challenging but I was able to walk around half of the shop before I decided to leave and not push it too far. I managed to get home without a panic attack and just couldn’t stop smiling at what I’d achieved. It’s such a small thing to normal people but for me it’s something that’s been impossible for 6 months.

The other small victory which again, seems larger the more I think of it, was telling people. In the past when I’ve told people that I’ve achieved something that I wasn’t able to do before they’ve often jumped on it and assumed that I’ve done it once and can therefore do it again and that it’ll be easy. I wish this was the case but alas it’s not. I’ve not suddenly improved and won’t be able to do this every time I run out of milk or need more wool. But I do hope that I’ll be able to do it more often and build it up to being able to buy things when I need to! I often keep these things quiet so that people don’t think I’ve improved when I actually haven’t because to me that’s a huge amount of pressure to keep performing and my anxiety is really triggered by pressure and perceived pressure from others. Whenever I feel like I have to do something, it’s much harder for me to do than if it were just up to me because I often feel like I’ll let people down or disappoint them. This means that usually I just tell them months later when that thing is no longer an issue and has become second nature to me again but that means that I miss out on the encouragement and support.

So yesterday, still feeling brave after venturing into the shop, I decided to post about it on my Facebook profile and was completely overwhelmed by how many people liked and commented and to my surprise, not one of them mentioned improvement and all of them were just happy for me and excited that I’d managed to do it. Getting that encouragement and support and hearing how proud of me and excited for me they all were was such a huge thing for me. I often feel very alone because I spend so much of my time trapped in my flat on my own but knowing that I’ve got a whole heap of people cheering me on and being brought to tears by this tiny thing I’ve done is just wonderful and I know it’ll spur me on to keep fighting for the small victories on the days when I’m feeling particularly brave and able. I promise to let you all know the first time I’m able to buy milk when I need it instead of going without tea because that will be a day to have a party (a small one that’s indoors and quiet, with no pressure, but nevertheless a party)! To those of you who have supported me in whatever way, thank you, you’ll never know how much it helps me to Fight for Small Victories!

15 Years of Trying to be Me with M.E

Today marks 15 years of having the condition M.E/CFS. My life as an ill person started when I was just 9 years old with a common cold. I never fully recovered. On February the 16th 2000 I got a terrible cold and was really unwell with it for 3 days. I was off school because I had no energy and a constant headache. This continued, long after the cold had gone and I was left feeling ill, tired, achy and confused for weeks. After 3 months I returned to school and everyone thought I was fine. I’ll discuss the ins and outs of what happened between then and now in far more detail at a later point but for now I want to focus on what it’s been like to grow up being unwell. To grow up being different. It’s very difficult to look back on my life of 24 years and realise that almost two thirds of it has been spent at least partially under the thumb of a relentless condition that even now, many doctors still don’t believe exists.

The way we diagnose and categorise M.E has changed significantly since I was originally diagnosed when I was 10 by an M.E specialist in London. When I was diagnosed it was classed as a mental illness, huge amounts of stigma were attached to the condition and I was regularly accused of faking it and making it up by children and adults around me. I was told I was lazy, school phobic, skiving, attention-seeking, fabricating symptoms and imagining or willing myself to not be able to do things. These sound like things that children would say in the playground, and they were, but much more damagingly they were said to me by adults too. Adults who I respected and looked up to, who’d often known me my whole life, who now thought I was capable of imagining a condition and lying about it just to skip school. M.E is now widely recognised as a neurological condition and research is increasingly showing that there are significant biological changes in people like me who have the condition. As yet, there is no known cause, treatment plan or cure. We’re diagnosed by process of elimination and have to undergo months of testing to have everything else ruled out – everything treatable, everything that goes away within a few months, everything curable. Until you’re left with one diagnosis – M.E.

There isn’t even a consensus on what my condition should be called. I was diagnosed with M.E by an M.E specialist but what the M and the E stand for has changed since then. The M is Myalgic meaning muscle pain. The E used to be Encephalomyelitis meaning brain, spinal cord inflammation and is now Encephalopathy meaning disorder/disease of the brain. Many doctors prefer to use the term CFS – Chronic Fatigue Syndrome. I personally hate this label and I know many other M.E sufferers do too. While fatigue is the symptom that binds all of us sufferers together, it’s by no means the only symptom. If you tell someone that you have CFS it almost always elicits the response “Oh I’m tired all the time” or “I’m chronically fatigued” followed by “maybe I’ve got CFS too” and then usually laughter. Over the last two weeks there has been a proposal by the US Institute of Medicine that the name should be changed again to try to encompass the fact that the condition does exist and causes patients real, severe and very long-lasting symptoms. The proposed name is SEID – Systemic Exertion Intolerance Disease. I think it’s great that health departments are finally trying to give credibility to this misunderstood and hugely judged illness but I can just imagine the comments now: “Oh maybe I’ve got that, I hate going to the gym”, “What a great excuse to not have to do P.E or do exercise, maybe I’ll say I’ve got that” or other such hilarious trivialisations. 15 years of my life has been affected by this condition but people still feel it’s appropriate to joke about it so they can skip the gym without feeling guilty.

When I was 13 my condition got so bad that I spent 3 years using a wheelchair without which I was a prisoner in my own home. I had to choose between walking around or going to school and sitting in a lesson learning something because I didn’t have the energy to do both. I was bullied for months by so many people at my school for using a wheelchair. They all knew I was physically able to walk and not paralysed which to many of them meant I was “faking it” which I was regularly told to my face and behind my back and even had a Christmas carol made up about me by a group of girls. There were two of us at my school who used wheelchairs, I was known as “the one that can walk”. People I’d made friends with stopped speaking to me when I came back to school in a wheelchair, one particularly cruel girl who had visited me during one of my sickest weeks went back to school and told my whole class that I’d admitted I was faking it and said that we’d spent hours playing football in my garden and that everyone should stay away from me because M.E was contagious. The week she had visited I’d been physically unable to walk because my legs would not bear my own weight. I couldn’t shower and could only bathe once or twice a week with my mum having to help me in and out of the bath and washing my hair for me. I was 13 years old and completely reliant on my mum when I should have been gaining independence and going out shopping with my mates and meeting my first boyfriend. That girl’s lies caused me to be ostracised by almost everyone in my teaching group and it wasn’t until months later that I found out what she’d said or I’d have put them right.

Despite being intelligent and near the top of my class when I was at primary school, nothing came easily to me once I got M.E. One of the most devastating symptoms, even more debilitating than the physical pain, aching and fatigue is brain fog. It’s also the one symptom that never leaves me even when I’m at 95% functioning. Brain fog feels like your mind is wading through treacle. Everything is more effort – thinking, listening, talking, answering a question, telling a story, thinking of words, concentrating, remembering, recalling, even recognising. Brain fog means that despite being able to read the local newspaper by the time I started school, I often go for months at a time being unable to read a book because I can’t concentrate hard enough, focus enough on the words on the page, comprehend what I’m reading, or remember names or plot lines. When I’m stressed the brain fog gets worse and is noticeable in conversations people have with me particularly if I’m put on the spot. My mind goes blank, I’m unable to comprehend the question or I lose the ability to construct an argument. This has meant that school exams and job interviews have been really hard for me because I lose the ability to express myself properly. I can’t keep enough information in my head at once to be able to proof read an essay from beginning to end and know that it makes sense so almost everything I wrote for my degree and have written since has to be proof read by someone else because I simply don’t have the skills to do it unless I’m having a really good day.

Despite all of these things, I’ve never given up fighting to get to where I wanted to get to. I’m one of the most determined and motivated people that you’ll ever meet and with good reason, I’ve had to be! When I was told that I would have to repeat my final year of secondary school in order to gain enough GCSE’s to get into college I made sure that no matter how ill it might make me, I’d get my 5 A*-C grades in 1 year just like my friends would and I did. I even got a 6th for good measure. At college my health really deteriorated after the first term and I spent 6 weeks pretty much in bed. I was advised in my second year that I’d have to drop one of my three subjects because I had under 50% attendance and was badly failing. I refused to drop it and told them to give me a chance and I pushed myself really hard and by the end of the year had got my attendance up to 73% and managed to get an E (not a good grade but I passed despite being assured I would fail). Going to university had always been something I’d wanted to do growing up but it never seemed like a feasible option when I badly relapsed every year for the first 8 years of having M.E. I applied to universities close to home so I could commute and not have to deal with moving out as well as making friends and coping with the workload. I was rejected by all of the universities within an hour’s train ride from me so I braved it and looked further afield. I moved to Cambridge following my gap year and enrolled at Anglia Ruskin University to study Psychology. I don’t think I ever believed that I’d get through it but I had to try because I couldn’t get my career in mental health without having at least a 2:1 in a psychology degree. I somehow managed to get myself through it and didn’t just scrape a 2:1, I was just 0.25% away from getting a First! I was in complete disbelief when I found out my results and I can still feel the pride and aching in my cheeks from grinning ear to ear all day when I graduated. I even went back to dancing after 3 years of using a wheelchair and took my Grade 7 and Grade 8 ballet exams achieving Distinction in both.

Many of the mental health issues I have now are because I was so doubted and misunderstood when I most needed to be supported and believed. We’re so quick to judge or advise or make suggestions about how another person could handle things differently or “better” but in doing so we often isolate that person and make them feel that they are failing in some way and should be coping better. I certainly felt that I was failing while I was growing up. I was regularly told I should be grateful that I wasn’t terminally ill or paralysed and told to just smile and “think positively”. What people didn’t seem to see was that I felt like I was drowning and I gave up most of my childhood to the M.E and I wasn’t great at just grinning and bearing it! I now surround myself with people who trust me and know that I’m doing what I think is right and what I think is best for me to make the quickest and best recovery possible. They’re just there for me, offering encouragement when I need it, support and understanding and cheer me up whenever I need a good laugh.

15 years is a long time to share your life with a condition that is still so widely ignored, misunderstood and stigmatised. After too many years of being expected to listen to others’ opinions of me, I’m trying to stand up for myself and through this blog I have a voice. I’m not being ignored anymore and 15 years on from when I started this journey I’m now going to be me with M.E (and a whole heap of other conditions), at least until I can be just me.

For more information please visit the following links:

http://www.scientificamerican.com/article/chronic-fatigue-syndrome-gets-controversial-redefinition/

http://www.meassociation.org.uk/about/what-is-mecfs/

http://www.ayme.org.uk/symptoms

A New Year, A New Start? Not Bloody Likely!

For me, New Year embodies an awful lot of what is wrong with the world. For a start, everyone has the expectation that it has to be “The best New Year’s Eve EVER” and in reality, it’s a flop for almost all of us, almost every year. I’m of the opinion that in a lifetime you’ll have fewer than 10 decent NYE’s and my current count is 2 in 24 years. I can guarantee that today will not be increasing that number. NYE also seems to incentivise people to decide to make utterly unrealistic changes to themselves or their lives under the guise that everything will be different in the New Year. Why is this the case? Why would a date change affect this in any way? Last I heard, it wasn’t the fact that the date was 2014 that made you fat, it was your insistence on eating all of the chocolate biscuits and having takeaways three nights a week. 2015 will not make those things go away, nor will it decide that you “deserve” to be thin and therefore none of the extra calories you consume will count. New Year’s Resolutions are also a completely ridiculous idea because they add pressure but also give you a get-out clause because everyone knows that almost no one keeps to their resolution for more than a month. If you really want to change your life then start today, don’t wait for the first of January when you’re the fattest you’ve ever been after eating your own body weight in Christmas food, smoking like a chimney due to the added stress from family arguments or vulnerable to deals at your local gym that are only actually deals if you ever turn up to the classes that deep down you already know you have no intention of attending. Obviously, you may be reading this on the 1st of January and thinking that I’ve gone mad and am completely contradicting myself but I’m actually writing this on the 30th of December and really mean it for any other day of the year.

I certainly won’t be making any New Year’s Resolutions and will have no one to kiss at midnight because my boyfriend of 3 years will be at work. I will be quietly toasting in the New Year with some form of soft drink (no alcohol allowed whilst on meds) and feeling very flat about the non-event that I should apparently be celebrating. New Year seems to bring with it a time for contemplation of where we are now and where we’ve been in years gone by. I mentioned a lot of this in my last post but am still thinking about where my life has taken me and where I may still get to go. I’m very thankful that I don’t buy into the idea of New Year – New Start or that how your year starts will dictate the rest of it. Last year I toasted in the New Year with two ear infections and a perforated ear drum but I was pretty much the happiest I’ve ever been. I’d been living with my boyfriend for 4 months, work was going really well and I was loving it, I had interviews lined up for a permanent job there, my family life had settled down and I was able to do all of the things I wanted and had an active social life. Little did I know that 3 months later I’d be struck down with an anxiety disorder that has totally crippled my life and turned it upside down. My social circle has become extremely limited ; my life is pretty much restricted to my two bedroom flat and occasionally visiting my dad and my grandparents because their homes are very familiar places to me; and I’ve not worked in over 9 months. This year I will be starting 2015 with an anxiety disorder. But I will also be starting it with a few, very close and supportive members of my family and friends, a blog that had over 1000 hits in the first month and a successful small business that I set up selling items made with a skill I only taught myself in May (if you’re interested I sell crocheted items and greetings cards at Lucy Locket Crafts on Facebook). I simply intend to keep challenging the anxiety where I can and to learn as many new skills as possible while I’ve got the chance.

I will not be making any resolutions because in my opinion they just set you up to fail. I have no specific goals for the year and I have no idea what the future holds so instead I’ll share with you my life’s goal. If I do nothing else with my life but this then I’ll die happy. I want to make a difference to others. When I’m gone I want everyone to say that I made a difference, that I helped change a life, that I was there when no one else was. I want to help those who are like me, who suffer from mental illness, who aren’t listened to, treated, cared for, or understood. I want to get programs set up in school so that we can stop the next generation from developing as many conditions as we see now. I want to help teach children coping strategies so that they’re equipped to deal with stress and change instead of crumbling under pressure like I, and so many others around me do. I want to make people aware of mental illness, of the signs, the symptoms, the help and treatment available, the struggles and the shame. I want to make people understand what it’s like, how they make it worse and how they can help make it better. I want to reduce stigma so that in the future, those with mental illnesses only have to fight the symptoms, not society’s ignorance and judgement. I want to make life different for the mentally ill. That’s way too big to be a resolution, it’s far too important to fail at after a month and it can’t possibly be achieved within a year. In my opinion, the notion that the “slate” is wiped clean at the beginning and end of every year is just nonsensical and you don’t get to “turn over a new leaf” just because the year has changed. Make goals and work towards them, if you go wrong, get yourself back on the right path. Everything I do at the moment is working towards getting myself better so that I can finally go out and help others like me. I will not be miraculously cured as the clock strikes midnight tonight, I won’t suddenly have the motivation I need to shift the extra 3st of weight I’m carrying and I won’t have a personality transplant that stops me from swearing ever again. I will simply continue to work towards my goals, clambering over the obstacles in my path and making sure that I carry on doing everything I can to make a difference to others. A New Year, A New Start? Not Bloody Likely!!!!!

Christmas With Mental Illness

Christmas is a very difficult time of year for those of us with mental health problems. Particularly, those of us in the middle of a period where our condition actively affects a lot of aspects of our life. For me, this time of year is particularly difficult. Why? Because three days ago it was my birthday. I’ve just turned 24. I find, and always have found, that birthdays lead me to thinking about where I am in my life now and comparing that to previous years as well as thinking about how I compare to others my age. This is where I start to go wrong. As my boyfriend pointed out to me only last night, comparing myself to others is a very bad thing for me to do. I’m not very good at comparing myself on the good things or the positive aspects of my life or the things I do well when my life is going badly. I tend to focus on where I’m being outperformed by others, not achieving as much or areas in which I’m less talented than them.

At this particular time of year you’re surrounded by expectations – expectations to be happy, successful, coping, even a joy to be around. When you’re mentally ill these expectations are not necessarily something you can live up to every day and this can lead to you feeling very worried about any social encounters you might have with other, more successful and joyous people, or indeed anyone. On a day-to-day basis I try to ignore these thoughts and feelings and mostly, I do very well at just muddling along and keeping busy. Christmas really does compound the problem though because I normally love this time of year where you get to see people you’ve not seen since the previous year or travel home from Uni for the holidays filled with exciting stories of the fun you’ve been having there. Normally I get to enjoy the carol services, Christmas lights, food shopping, present shopping but this year all I’ve been able to join in with is decorating my Christmas tree (it is a stunner though).This can lead to you wanting to just isolate yourself and spend the whole festive season on your own but then you’re left feeling lonely knowing that so many others are all having a lovely time together. So you put on a brave face and try to ignore your own pain and suffering so that you don’t ruin Christmas for those you’re spending it with.

However, I know I am not great company. To put it bluntly, I feel I have nothing to offer currently. I don’t have a job to talk about, I can’t tell you about my children, how busy the shops have been or the latest deal at Tesco. I don’t have any events to look forward to or talk about, any gossip from the office Christmas party, or plans to excitedly make for New Year’s Eve. This is probably one of the reasons why I feel so anxious every time someone calls or visits me because I don’t know what to talk about. This year I’ll be spending Christmas at my dad’s with his partner, a couple of their friends and my brother. While I’m excited about it and looking forward to spending some of the festive season with my family, it’s also filling me with dread because I feel that I have so little to offer. What can I talk about? What can I tell them? No one wants to talk about an anxiety disorder or my latest medication side effects over Christmas dinner and beyond that there’s not an awful lot going on in my life. I watch a lot of films and TV but not the same things as they do so we can’t discuss the final of Strictly or The Apprentice or the latest episode of Holby City. So what do I have to offer to a conversation?

It feels like my life has been on pause since the day I had to stop work. That’s 9 months and counting of my life being on pause while everyone else’s are racing by. People I graduated with are now in amazing graduate jobs as Assistant Psychologists, Research Assistants, Psychology teachers or training to be Mental Health Nurses. The offer for the job I interviewed for in March was withdrawn in September because they needed to fill the space and I wasn’t well enough to work. People I went to school with are able to drive cars, have got married or are buying their first house while I’m living in a rented flat with my boyfriend having to financially support me because I’m not well enough to work. This is not how I envisaged my life to be and despite knowing that it isn’t my fault, I can’t help but feel like I’ve failed and let myself and everyone else around me down. Today, as you can probably tell, is not a good day and I’m feeling pretty hopeless, but I’m not like this every day and it’s certainly been exacerbated throughout December knowing that Christmas has been looming. I for one, am very much looking forward to the 1st of January and will be doing everything in my power to make sure that I’m not as ill, or restricted by next Christmas because this has been no fun at all. Worrying about what to say and how to behave when your life is almost solely consumed by an anxiety disorder leads to a very challenging Christmas With Mental Illness.

Afraid Of Everything – Life With An Anxiety Disorder

I’ve currently got an anxiety disorder and have been virtually housebound with it for the last 8 months. Most people aren’t sure what anxiety disorders are like and many think that they’re about something. Some anxiety disorders including phobias are about something but many, like mine, are not. This is my attempt to explain what generalised anxiety feels like and how it develops.

Anxiety feels like you’re drowning in a sea that no one else can see or help you out of. It feels like you’re being strangled and can’t get enough air into your lungs to breathe. You feel scared. More scared than you’ve ever felt. Most of the time you don’t even know why or what you’re scared of. And yet you are. And it eats you up inside.

Anxiety is like a creeper around a tree. It starts off slowly growing alongside it and before you know it it’s stifling it, preventing it from growing, moving and eventually stopping it from living. Anxiety slowly creeps into your life through worry about little things, and then bigger things. This worry then becomes obsessive and less controllable. It stops being about a specific area of your life and spreads throughout your life. It keeps growing and growing until it takes over your life. Then it starts squeezing out the spontaneity, the ability to adapt and cope with change. You end up unable to cope with strangers, unfamiliar places, or new situations. You struggle to make phone calls, leave the house, or remember things. You get anxious about making mistakes or regretting things which makes decision-making a nightmare. You can’t plan or think straight because all of your thoughts become plagued with worry and you spend days feeling anxious about an upcoming event that when well you’d have taken in your stride. Your life gets reduced down to very limited “safe” activities and situations and your thoughts are so anxious you no longer feel like yourself. You struggle to explain why or how you got this way because by this point the anxiety has taken over so much that you’ve almost forgotten what it felt like not to be anxious and you think back over events in your past and wonder how on earth you accomplished them. Your life revolves around fear and the life you once knew seems to be gone.

At some point the panic comes. Panic is like everything I’ve already described but ten times more intense. Panic feels like your life is being threatened right here, right now. It feels like the worst thing you could possibly imagine is imminently going to happen and you’re powerless to stop it. Occasionally you end up feeling so panicky that you lose control. Panic attacks are awful but when you lose control during one, it’s so much worse. You can barely speak or breathe because you’re hyperventilating so much. You can’t be reasoned with because you’re no longer rational due to being so frightened. You can’t keep still because then the “bad” thing might happen but there’s so much adrenaline coursing through your system that you can’t stand or walk or even sit. This has happened to me five times in my life and during most of those I had to be restrained by people because I was so out of control. I have little memory of these events other than how I felt and you truly couldn’t feel more frightened, it’s as if a gun is pointed at you. Afterwards, once your brain has decided to realise that the threat doesn’t exist, you feel totally exhausted and very embarrassed. You have to apologise to the witnesses who you’ve just traumatised who were on the verge of phoning an ambulance or the police. As soon as this has happened to you once you’re always aware that it could happen again and every anxiety-provoking situation becomes more so because you fear losing control again and perhaps being hospitalised. Fear feeds fear and the cycle continues.

Anxiety robs you of rationality. It steals your freedom, your courage. You feel incapable of doing anything new because it feels so intensely threatening. The rational part of you is still there fighting, knowing that no real threat exists and yet every day you’re thwarted by mundane tasks because they threaten your very existence. Living every day like this is completely exhausting. The anxiety even eats into your sleep, keeping you up for hours at night and then warping your dreams into worrying and fearful situations so that waking up is almost a relief until you realise that you have another anxiety-filled day ahead of you. Anxiety doesn’t let up. It doesn’t ease off when you’re having a particularly bad day. On those days it ramps up the intensity so that bad days are almost unbearable and you feel scared of just about everything. Anxious thoughts can’t be switched off and they’re often impossible to be distracted from and so you’re scared and worried and anxious until your brain forgets what it’s scared of and anxious about and maybe you’ll get some relief by focusing on something normal for a while. But sometimes your brain just keeps you feeling anxious, even though you no longer remember why and so you can’t rationalise it or even explain it to anyone else because it no longer makes sense and it just is. You’re no longer anxious about something, you’re just anxious. And so it goes on…. and on…. and on.

I truly hope that this conveys some of what those of us with anxiety disorders are going through. For those of you that may have underestimated what it’s like and think we just worry a bit more than usual, I hope that this has brought some clarity and will make you think again. Those of you that have suggested we “are not being rational”, “need to try harder”, “should be giving it a go” or “should just go outside more”, I hope you realise how unhelpful these comments are and that what you’re asking us to do is nigh on impossible when we’re feeling such intense fear and panic. Maybe if you walked a day in our shoes you’d see why the idea of going food shopping makes us cry, or why we have to work ourselves up to calling our GP, or why we’re tired all the time and can’t always string coherent sentences together when our minds are racing with anxiety and never letting up. Instead, why not offer to visit us and brighten our afternoon, send a card so we know we’re thought about or give us a call to see how we’re doing? We’re often out of sight because we’re being tortured by these thoughts but it’s such a shame that we’re so often out of your minds too. I hope this will have given you enough of a glimpse into our lives to see that we’re battling the anxiety every day and it’s not a fight we always win but we do always try.

So now you know, Life With An Anxiety Disorder can mean being Afraid Of Everything and often not even knowing why.