How to Cope with Being Housebound – 8 Tips from a 14-monther

Update 23/3/20: For those looking for tips on coping with social distancing, self-isolation, lockdown and generally being indoors because of Coronvirus, please read my new and updated blog post here, written on the 23rd of March 2020. There are also lots of tips there that would be useful for those who are housebound due to anxiety as well as other mental or physical illnesses so do read that post in addition to this one as 6 years in, I’ve learnt a lot more since writing the original post below.

  1. Try to get a routine

I can’t emphasise this point enough and it’s the only thing that keeps me even vaguely on track. I don’t timetable every little thing, that’s too restrictive for me but I have a basic list of things to do each day. One of the main things is get up at and go to bed at the same time each day. Try and eat at set times and maybe set yourself a tv schedule or activities at certain times so that you don’t become disorientated about time of day.

  1. Get up

This is a hugely important point for anyone that doesn’t have to get dressed each day. Do it anyway! You may not think it makes much difference but you’ll be amazed how quickly your motivation disappears and your standards slip if you don’t get up properly each day. You don’t have to get dressed up, plaster yourself in make-up and curl your hair but do the basics of showering and dressing each morning (not in the evening before your partner returns from work) because at least then you’re starting your day right. When you’re out of work/sick/housebound it’s all too easy to stop caring, to stop bothering and to make your situation worse. These small things are so important to keep you functioning as much as possible so that you don’t fall into the depression pit.

  1. Eat properly and regularly

This sounds obvious but despite having a lot of time on our hands, many of us really struggle at getting our eating under control. For the first 6 months of being ill, thanks to the medication I was on and sheer boredom I would just graze throughout the day. I was never properly hungry for meals because I kept snacking and I just ended up eating junk food because I felt sorry for myself and wanted to cheer myself up. This is a huge reason why Western society is becoming so fat, because we reward ourselves and cheer ourselves up with food. Food is not a reward, it’s fuel. Once it starts becoming a reward you end up on the slippery slope towards obesity. The meds I was on gave me super strong cravings for food that were so intense they’d stop me sleeping. In 6 months I managed to gain almost 22lbs. This then leads to major problems because when you’re housebound exercising is really challenging so losing the weight becomes very difficult. Trying to stay out of the fridge when you’re inside all the time requires an immense amount of willpower but take it from someone who knows, you will feel so much better if you stay a stable, healthy weight. I’ve now managed to lose 30lbs and still need to lose over a stone before I’ll be back to being a healthy weight. All of that is having to be done through food restriction because I can’t do enough exercise in my flat to be able to burn off the calories. It’s really really hard but I’m steadily losing the weight. Don’t use being out of work or being ill as an excuse to gain weight because it truly does make everything worse and it’s hard to fight the condition and boredom and weight loss on top!

  1. Keep busy and learn new things

It’s all too easy to settle into a routine of waking up at noon, mooching about in your dressing gown, watching trashy daytime tv, snacking and not bothering to do anything but this is a sure fire way of maintaining and worsening your situation and state of mind. None of those things are good for your mind or soul and they’re a great way of becoming disillusioned, bored and unmotivated. Use the time you have to do something productive. Learn something new, contact friends and family, be creative – just do something! Since becoming housebound last year I’ve taught myself to crochet using youtube videos, I set up a Facebook page to sell my crocheted items and take regular commissioned orders, I started doing adult colouring, I set up this blog and very recently set up a second so that I can review adult colouring books for publishers, I regularly contact friends and family and try to arrange visits with them, I’ve been interviewed on the radio and I’ve learnt to bake lots of new things. There are days when I’m too ill to do anything and I just lie curled up on the sofa, watching tv, barely even able to make myself food or drinks, but on the majority of days when I don’t feel like that I make sure that I’m doing something useful and productive. It’s not the same as going to work or being the perfect housewife but at the end of each day I try to have something that I can show that I’ve done, something that I’ve achieved, something that I can tell my boyfriend about when he gets home from work so that I don’t feel completely useless and hopeless. My self-esteem plummeted when I had to stop work and I find it really hard to maintain my self-worth because I do just feel useless and worthless most of the time, however, being productive means that I can show myself that I’ve done something and that I’ve not wasted the day in bed. I’m not able to change lives at the moment like I hope to do in my future mental health career, but I will at least have things to put on my CV to show future employers that despite life being really tough, I still did my best to keep going.

  1. Write a list of your achievements no matter how small

I always used to hate posts like this because they were full of either common sense stuff that was really obvious, or ridiculously positive bullshit (sorry Nana) that just made me want to vomit. I’m not an optimist and I’m certainly not one to look for the silver linings of the clouds that seem intent on constantly raining on me. However, I also know that I’m incredibly good at ignoring all of the good bits about myself and all of the things I achieve. Throughout being ill I’ve thought about the things I can’t do, the things that others can and are doing, the burden I have become and how useless I feel now I can’t work but this all means that I overlook all of the ways in which I’m trying, the ways in which I’ve not given up and things I do to fight this condition each day. On one of my particularly good days I managed to go to my local charity shop and found a lovely cupcake shaped cookie jar (I collect all things cupcakey) and that jar now has bits of paper in with all of my achievements on. These include managing to go to the shops, taking the bins out, standing up to people, visiting relatives, all of the things that a week after the event I’ve forgotten about and discounted because I’m still not cured and able to be useful yet. It’s not changed my life and I doubt it’ll change yours but it does make me focus a little more on each small success I have and I now have a record of all the things I’ve achieved that I can read through if I’m having a rubbish day (providing I remember the jar exists).

  1. Be outside as much as possible

This sounds a little odd coming from someone whose biggest anxieties are focused on being outside and around lots of people but I’m also best placed to advise you that if you can go out then you should because being cooped up inside is unbelievably claustrophobic. If you can’t go outside, like I’ve often not been able to, then move rooms so you’re seeing and experiencing a different environment and if you can, open a door or window so that you can get some fresh air. I’m lucky enough to have a balcony so often when I can’t face going outside and being around people I’ll go and sit out there or even just sit inside next to the open door. These things really do help you feel less imprisoned which is a huge problem for those of us who are housebound.

  1. Keep in touch with people and make contact

This is really important because, in my experience, when you’re out of sight, you’re often, sadly, out of mind too. When you’re newly housebound people will get in touch to see how you’re doing and offer advice or support but as the weeks and then months go by, many of these people drop off your mailing list and get back on with their own lives. It’s vital to make the effort and keep in touch with the people you care most about so that you don’t lose all contact with the outside world. It can be really hard to make contact because when you’re housebound you can’t talk about your job, or what happened last week on your commute, or that new restaurant you tried out and you may often feel that you have nothing to talk about and nothing of value to say – I certainly feel like this very regularly. Keeping in touch with others keeps you rooted in the real world though and means you can stay up to date with what’s going on in your local area, what’s happening at work in your absence and on the latest gossip about that girl you went to school with. These conversations help keep you in the loop and stop you from being totally isolated. Unfortunately, many people don’t understand what it’s like to be housebound and don’t know how to help and so they withdraw for fear that they may upset you or be rubbing your nose in it by talking about what they’re doing that you can’t. I can only speak for myself here, but I can’t think of any time in the 14 months I’ve been housebound that I’ve been anything other than grateful and interested to hear about someone else’s life. The mundane things to you are so much more interesting to us now our world has shrunk and I’m more than happy to hear about how dreadful the commute has been, how work’s been grinding you down or about the latest argument with your partner because it means that I get to share in the normal things, the everyday things, the things that make up our lives that I often no longer experience. This contact may also lead to people offering to visit and while this can be very challenging, particularly for those of us who are housebound because of anxiety, it’s always worth trying to fight the demons and have people over because in my experience it lifts my mood for hours if not days afterwards. Human contact, both physical and psychological is vital for us to thrive and when you’re housebound this contact is drastically reduced. As an extrovert, I love to be around people and can talk to them for hours each day and it’s something that has always made me thrive. Now I’m housebound, I regularly go for days where the only contact I’ll get is a 10 minute chat with my boyfriend between him getting home from work and then having to go to bed or a quick facebook message to someone. Keep in touch with as many people as you can so that you don’t become too isolated or forgotten.

  1. Don’t give up – write a list of all the things you’re looking forward to

This can be a bit of a depressing activity because you’re reminded of all the things you currently can’t do and are desperate to. However, it can also be really exciting because we end up in a very special place where lots of mundane tasks that everyone else takes for granted become something we look forward to, work towards and cherish. Having your life taken away from you and being forced to live it within the confines of a few walls is really awful – it’s why we imprison criminals, it’s used as punishment and it often feels like you’re being punished or tortured when you’re housebound. But, you end up with a completely different perspective and I personally have an ever-growing list of things to work towards being well enough to do. Most people dread going food shopping each week but it’s something I’ve always quite liked doing, I can’t even express how much I’m looking forward to being able to take over the role of chief food shopper in my relationship again. I can’t wait to be able to browse in shops and take my time choosing fresh bread and comparing prices of tinned tomatoes to get the best deal. I can’t wait to be able to talk to shop assistants and train conductors, to be able to just jump on a train and visit friends and family. I daydream about spending the day at the beach, buying an ice cream, attempting to learn to run. I want to join a pilates class and go to a crochet group so I no longer have to crochet alone. Keeping all those things in sight keeps me pushing forwards and trying to improve and I’d really advise writing your own list so that you have things to look forward to and eventually, things to write down and put in your cupcake jar that you’ve managed to achieve.

Being housebound is one of the worst things that has ever happened to me and I wouldn’t wish it on anyone, but doing the things listed above gives you the best chance of staying as sane as possible and coping as best you can. These things will help you get through each day and hopefully keep you going long enough to get out the other side and released back into the outside world. I don’t have any quick fixes, no magic cures, no advice about how to stop being housebound and be able to no longer be anxious outside the house, I’m still fighting those demons and the majority of days they still win but these tips will help you retain a sense of self, a sense of achievement and stop you going stir crazy so give them a try – I’d love to know how you get on and whether you found any of them helpful.

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

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.

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!

Depression – Living a Life in Darkness

Trigger warning: The following is a very honest, descriptive account of what depression feels like and what it’s like to live with. There is also mention of suicidal feelings and thought processes. If you feel that this may trigger you in any way then please do not read on.

Having depression is like having a rock in your chest. The rock weighs you down all day, every day. It’s there when you’re happy, when you’re sad, it drags down the good days and makes the bad ones even worse. It physically hurts. It’s so hard to imagine how it feels until you’re unlucky enough to do so but imagine lying down on the floor with someone’s foot on your chest, every time you try to move or reach up, they push down a bit harder. Depression often feels like this. It’s why we get tired more easily and why it’s so hard to escape once it’s got a grip on you. It also makes us lose motivation and concentration because everything is so much more effort than usual.

One of the worst parts of depression, particularly for me as an extrovert, is being in a room full of people or with a group of friends and just feeling empty and detached. You desperately want to immerse yourself in the conversation, laugh, make others laugh, join in in some way, but you feel separated and like a spectator rather than a participant. You feel so empty and hollow that you daren’t open your mouth for fear of sucking the life out of the conversation or worse still, people realising just how bad you’re feeling and having to explain or cover it up. You often feel completely numb and during the time you’re numb you dream of feeling, feeling anything, to remind you you’re alive, human, a conscious being. When you’re no longer numb you feel things very intensely but it’s only the bad things that feel intense and everything else seems to pale into insignificance. Being numb is horrible because you just feel nothing but feeling such intense sadness is just as bad! We often spend hours or even days fighting back tears or not managing this and bursting into tears in public. People can’t even help us stop crying because there usually isn’t a reason, we’re just so overwhelmed by how bad we’re feeling that we can’t hold it in anymore. You may be thinking that this sounds very similar to grief and bereavement and in a lot of ways it is, that’s why you can’t get a diagnosis of depression within 6 months of a loved one dying because they are so similar and you are probably still grieving rather than having depression. The biggest difference is that depression continues, often doesn’t have a trigger and isn’t about one thing, it consumes your whole life and doesn’t improve even through the passage of time or through your life circumstances improving. Depression just is – regardless of other events.

In the darkest depths of depression it feels almost like your soul has been sucked out, like your personality is crushed and all of the light, goodness and happiness in the world has been squeezed out and you’re left alone in darkness. There is no light at the end of the tunnel, no hope, no point. All you feel is numbness or sadness, so intense that it hurts. You feel crushed and broken but most of the time people can’t see this. They can’t see the pain you’re in, the darkness, the desperation. If you haven’t had depression then I can guarantee that you can’t fully appreciate what this is like but try to just imagine feeling like this every day for weeks and weeks with no let up, no break. It’s exhausting and just so painful! It’s this absolute darkness that leads people to consider suicide. Most people who haven’t experienced depression won’t be able to understand why a person would consider taking their own life, particularly not when from the outside, it seems like that person has many reasons to live. It’s not that we don’t see those things, it’s not that we aren’t grateful but the pain, the sadness and all-consuming darkness are just so intense and long-lasting that it seems like there is no way out. We have to live for ourselves, not for others, living solely for others actually leads to a very miserable existence because your happiness is based on theirs, your purpose is them, you can’t be you in your own right. When you feel so low and unhappy that you can’t bear to look in a mirror and can’t think of even one tiny little thing that you like about yourself and your self-esteem and self-worth are just non-existent, there is no point, no reason to carry on because you believe that you’re just taking from the world and whole-heartedly believe that it would be a better place without you. I’ve heard so many people over the years say that suicide is an easy option, that it’s selfish, that it’s cowardly but until you’ve experienced the utter depths of despair I’d ask you to keep your opinions to yourself. You cannot possibly say how you’d feel or react until you’re there. I never thought I’d ever get depression, let alone feel suicidal, I myself thought it was an easy way out to escape whatever you were finding difficult at the time. I was so wrong!

For 3 years – from the age of 16-19 I thought about suicide every day. And I mean EVERY day. I thought about methods, reasons, ways of hurting the people around me the least, ways to affect as few people as possible who might find me. I wrote letters to the people around me trying to explain why I was doing it, saying sorry and telling them what they meant to me so that they wouldn’t blame themselves or think they could have done something to stop me. I hated the idea of upsetting my family and friends and them blaming themselves when it wasn’t their fault but I hated the idea of living even more. It was unbearable getting through each day, trying to be normal and not fall apart, trying to get through my GCSE’s and A levels when I felt like my life was collapsing around me. I have no words of advice for any of my readers who are feeling suicidal currently because I don’t know why or how or even when I stopped feeling that way but at some point I did. My life didn’t suddenly get better, I didn’t have some religious epiphany, I didn’t have a failed suicide attempt that scared me into wanting to live. The thoughts just seemed to gradually fade and instead of them being all day every day they got to a couple of times a week and now I only think about it when I’m having a really bad day or a lot is going on in my life. There is hope, but you’re also not weak or selfish for thinking that there isn’t. I’ve been there and I know how dark and miserable life can be and if suicide were easy then I definitely wouldn’t be here today. It is a way out, but it’s certainly not an easy one. All I can suggest is talk to people and when you’re at your absolute worst just get through the next hour – that’s certainly what helped get me through!

Depression is a truly horrible condition, it is all-consuming and seeps into every thought process, every waking minute and even your dreams. It feels like you’re being tortured day in and day out. You have bad days, months or even years and then you have better ones but it’s always there, trying to drag you down and I personally have to fight every day not to be dragged down into those depths again. Please don’t tell us to smile, think positively or say “cheer up it might never happen”. These things are so dismissive and make us feel even more alone. You may not be able to see it but we’re often fighting for survival every day and putting a smile on our faces and saying we’re fine when you ask how we are might just be too much. Give us a hug, tell us you’re there and keep in touch even if we struggle to reply. Those things do reach us and often remind us we’re not alone, we’re loved and we’re cared for. You never know what that could mean to a person and how much that could make their day. The following is a quote spoken by Albus Dumbledore in the film Harry Potter and the Prisoner of Askaban – “Happiness can be found even in the darkest of times, when one only remembers to turn on the light”. When you have depression you have no idea how to turn on the light but small gestures from you can turn the light on for us and help us find a way through the darkness. Help turn on some lights for those of us Living a Life in Darkness!

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.

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A Day in the Life – 10th Feb

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 have chosen 4 dates, 3 over the coming 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 second day, the 10th of February. My first post for the 7th of November can be found here.

Today has been a day of two halves. I woke up exhausted after a night of very broken sleep but I was excited too because today a friend who I lived with at Uni and haven’t seen for 18 months was coming to visit. I spent the morning cleaning my flat and trying to get as much tidied up as possible – my anxiety causes me to worry a lot about what people think of me and where I live so I always make a big effort to make everything look nice before someone visits. My friend arrived and it was so lovely to see him. We spent hours talking, laughing and reminiscing about our time together at Uni and we did lots of baking as you can see in the photo above. We made some coffee cupcakes with coffee buttercream which were really delicious and some chocolate and pecan blondies which looked and smelled amazing but tasted unbelievably sweet and sickly. We had a great time making them though and it was a great distraction for me as I’m currently withdrawing from the medication I’ve been on for 6 months that’s not helped my anxiety and has just made me worse. The time flew by and before we knew it it was time for him to go home.

I felt very flat after he left. I always do when I’ve had visitors. It’s so exciting seeing people and having company and not being on my own. I don’t get visitors that often and due to being mostly housebound I’m pretty much reliant on people coming to me rather than being able to visit them myself. I’m always really busy before they arrive making sure that things are tidy and clean and that I’ve made an effort with how I look and I try to be as fun and as well as possible when they’re here because I worry that I’m bad company because I’m ill and don’t have exciting things to talk about or stories to tell. When they leave again it’s very quiet. I usually turn the tv on so that there’s some noise but it’s just me left with my thoughts and remembering all the things we’ve done during their visit. I really do love seeing people, I’m a huge extrovert and one of the hardest things about being housebound is the lack of contact I have with people and that means it’s always difficult when they leave again and I’m back to being alone.

Thanks to all the sugar I’d consumed by eating too many cakes and licking too many bowls of icing, I was well into a sugar low when he left so I curled up on the sofa and eventually ended up falling asleep. The withdrawal kicked in with full force by the evening and I was in a lot of pain and very disorientated and sedate. It took me until 9pm to go and make myself some dinner and I was wrapped up in so many jumpers because I was freezing cold. I don’t really remember the rest of the evening because my tummy hurt so much and I felt sick and confused. I tried to distract myself watching tv but I have no idea what I even watched because I was exhausted and poorly. Thinking through the time with my friend made me smile though and a couple of other friends are visiting later in the month which I’m really looking forward to. Their visits mean so much to me and keep me going even when I’m feeling really rough. My bed is calling me as I ache all over and really need a good night’s sleep!

Today, seeing a good friend and having lots of fun and being normal for a while really helped my mental health. Withdrawal is horrible and after 7 weeks and counting of it, I’m really ready for it to be over but nonetheless, today has been one of the best days I’ve had in a long time and it just shows the benefit of good friends, laughter and cake!