Awareness

Mental Health Awareness Week – Awareness is No Longer Enough

It’s Mental Health Awareness Week again and this year the tone appears to be changing. Not the tone of the government or most of the charities, but from campaigners and sufferers of mental illness there’s a distinct change occurring, a tiredness, a frustration and a building anger. This year’s theme is Nature which seems innocuous enough but honestly, who is it helping? For years, we’ve known that nature and being in green spaces helps improve mood etc etc. And yet, we are increasingly building on green spaces, packing people in like sardines so they’ve got no views, no parks, no wildlife around them and then during awareness weeks we tell them to go and seek out the nature that’s been so cruelly stripped away from their neighbourhood. How? Where? With what funds?

One of the biggest problems I have with this week is that it’s not designated to a proper cause. It’s called Mental Health Awareness Week but mostly it’s Mental Illness Awareness Week. Really, there need to be two. But much more than that, people need educating on the difference. We all have mental health, like we all have physical health, we all need to take care of our mental health just like we need to look after our bodies but mental illness is illness like any other. It’s when something’s gone wrong, off kilter, and we need access to diagnosis, treatment and support in order to regain wellness again. Nature is not a substitute for support, nor is it a treatment for mental illness. It’s a good tool to help keep mentally healthy and performing at your best but if you’re mentally ill, a walk or a roll around in some grass isn’t going to cut it where medication or therapy are needed.

Nature isn’t accessible to everyone. For so many reasons and in so many ways. Not just because it can be difficult to find when you live in particularly urban areas but also for those with limited time or resources and most notably for me, because I’m agoraphobic. My condition means that I don’t cope well with being outside so nature is pretty inaccessible to me. Lack of access to nature isn’t what’s keeping me ill, it’s not the cure for my conditions and yet all I’m really seeing on social media and the news this week is about how nature can help alleviate symptoms and while this is true in mild cases, it’s really not effective for those of us with severe symptoms. Most days I’m not well enough to even go out of my front door, let alone go into nature for a walk or a picnic. I live in a flat so I don’t have a garden I can go to. I’m very lucky to have a lovely view and can see a local park and the South Downs in the distance, I see squirrels and seagulls and foxes and people walking their dogs but it’s all through panes of glass. I’ve tried to follow tips and bring the outside inside and have an orchid and I’m growing some tomato and chilli plants. Surprisingly enough, despite all of this, my anxiety isn’t better and my agoraphobia still isn’t cured.

What I need is therapy. I don’t need awareness so much as I need access to support. I need to stop being threatened with discharge from my mental health team. I need support and treatment to exist in accessible ways that don’t require me to leave my home, the thing I need therapy in order to do! I need options that aren’t just CBT which I’ve exhausted over the years and which doesn’t work for people like me. I need waiting lists to be shorter. I need to not be waiting 3 years or more for an assessment that may still not lead to any new treatment options. I need doctors, MPs, and society as a whole to fight for funding so that instead of churning out the same “It’s OK Not To Be OK” and “Be Kind”, and “Reach Out For Help If You’re Struggling” slogans year on year, change actually occurs and people like me can finally access treatment and support without having to wait until these conditions possibly kill us. Fighting my own mental illness is hideously hard but fighting society at large as well is impossible. I’ve been blogging for 6.5 years and nothing has changed. Services in my area have been cut, doctors are retiring or leaving, appointments get shorter and spaced further apart and the threat of discharge gets bandied about more regularly. I’m still just as ill as when I first went to the doctors. I’ve still not received any therapy on the NHS. I can’t be medicated because all of the medications made me worse. I’ve just been left. The support I’m offered is an up to 30 minute call once every 6 months with my psychiatrist. He doesn’t know my Grandad who I was a carer for for 4 years has died, he doesn’t know that I’ve had physical health problems that have majorly affected my sleep for almost 3 months, he doesn’t know I’ve suffered from intermittent suicidal ideation, or that the waiting list for the assessment he’s sent me for has been extended by another year. Why? Because my next appointment isn’t until June and I last spoke to him before Christmas.

Nature’s great but it’s not a substitute for treatment. Awareness Weeks have had their day. What we really and truly need is Action Weeks. And then actual action. I no longer care about whether people accept that I have an anxiety disorder or realise that it’s not my fault or that I shouldn’t be ashamed of it. I know that awareness has its place for all of the people who are coming up behind me who are starting to suffer symptoms that they don’t understand or who are having experiences they’ve never had before. I know we need to make people aware but the whole point of awareness always used to be so that you sought help early enough because it’s been well-documented for a long time that the earlier you intervene in mental illness, the better the outcome and the less intervention is usually needed. But support is so sparse now that awareness is almost useless. It’s all well and good suspecting you have a mental illness and going to speak to your GP about it but then what? Almost all of the doors that used to open are firmly nailed shut thanks to funding cuts. We keep hearing about a pandemic of mental illness, but there’s no vaccine coming for this and social distancing will surely worsen the effects. Knowing what’s wrong with you is the first step but without a second you’re still stranded. Alone. Frightened. Unable to get better. And sorry to be a cynic, but walks or visiting gardens is going to be of little use to people suffering from psychosis or eating disorders or just about any mental illness that’s actually at a diagnosable level of severity.

I’ve been in two minds about whether to even post about this because I really don’t like posting negative or angry things, especially about public events or things that are aiming to help but this is falling so short. It’s like the Clap for Carers. It’s all well and good clapping but it’s not paying people’s bills, it’s not actually making a meaningful difference and it changes nothing in the grand scheme of things. Awareness weeks have had their day and could still be useful now if they were followed up with action but all the time we’re focusing on airy-fairy topics like nature and deeming that to improve everyone’s mental illnesses, we’re falling dangerously short and without radical change this pandemic is going to last a lot longer than the Covid-19 one will. We don’t need Awareness Weeks. We need action!

Applying for Benefits – My Experience

I don’t even know how to express how soul destroying it is to apply for disability benefits in the UK. I know about the system because when I was a child, my mum claimed Disability Living Allowance for me because I suffered from pretty severe ME. It was no fun filling out the 40-page form of all the things I couldn’t do and the help I needed but thankfully for me, my mum did most of it and she got help from an organisation and it was pretty smooth sailing.

Fast forward to February 2020 and my partner finally persuaded me, 6 years after becoming severely ill with 3 anxiety disorders, that I really was entitled to some financial help and that I should be applying. I’ve known for years I should be getting it but I just couldn’t face doing it because I knew how it would go because I’ve known a lot of people go through this system. Despite knowing exactly what would ensue, it somehow didn’t ease the effect it had on me. Had I known how much it would affect me, I’m sure I’d have never agreed at all. It’s made me so ill and it just seems to keep getting worse as each time they assess me, I’m disbelieved, doubted and misconstrued. It just eats away at you.

In order to get through my life day to day, I mostly ignore that I’m ill. I don’t focus on what I can’t do, I don’t think about myself as an ill or disabled person, despite knowingly and willingly identifying with those labels/descriptions, I just get on with what I can do and adapt as much as possible so I’m able to function the best that I can. But when you’re applying for disability benefits, obviously the focus is all on the negative and that would be fine if you only had to jump through those hideous hoops once. But you don’t. I’m now on my fourth attempt at getting them to believe the severity of my symptoms, my limitations and the amount of help that I need. I’ve already filled out their 40 page form, I’ve already spoken to a stranger for an hour on the phone where I tried my very best to answer their questions and give as much information about my situation as I could which all then got twisted. I then had to ask them to reconsider their decision after they scored me just 2 points and wrote completely inaccurate and dismissive statements that genuinely made us wonder if they’d mixed up my case with someone else’s because it was so wrong. After another inaccurate and assumptive judgement from them, I’m now having to appeal. All of this whilst navigating a global pandemic and the deterioration and death of my mother-in-law from terminal cancer just 5 days after the last decision letter came through.

Regular readers of my blog will know that despite not feeling it, I’m a very strong person who’s gone through a lot and continues to get up time and time again to keep on fighting through but honestly, fighting to get the government to believe that I’m ill enough that I deserve some money, and not a huge amount at that, is feeling like it’s too much to bear. I have to keep going into more and more detail about what I can’t do, the ways in which I fail, the ways in which I’m defective, the things my partner has to do to care for me and keep me as well as possible. I just don’t want to keep doing it. But I deserve this money, I’m entitled to this money and I should’ve had it for the last 6 years and because of their ludicrous system, I couldn’t bear to put myself through this to try and get it and so I’ve missed out. I’m trying to make a stand, to say “no more”, but every day I feel like throwing in the towel and just disappearing back into my own little world where I don’t have to perform like a circus animal to prove that I’m suffering and worthy of help.

On top of all of that, I discovered that they haven’t even used all of the evidence I sent them when I originally applied. Most notably, they haven’t used my diagnostic letter where my psychiatrist, who by chance has known me since I was 18, diagnosed me with the 3 anxiety disorders, I still suffer from, in 2015. Instead, they’ve used the 2 letters from before that in 2014 and an update letter from him in 2019 that literally says they’ll keep me on their system and doesn’t mention my conditions at all. I’m desperately hoping that this can only serve to strengthen my case at appeal but I just can’t understand why I’m at the point where I’m having to appeal, I should’ve just been awarded the money in the first place. I know this happens to thousands of people in all sorts of worse off, more obviously denying situations but that doesn’t make this any more ok that I’m one in a long line of people who’ve been unfairly rejected. I know all too well the stigma that goes along with claiming these benefits and that many lay people want the system to be stringent to weed out the benefit frauds but honestly, I don’t know how anyone who’s fraudulent would have the time, energy or persistence to get through this and actually win and the fact that 75% of decisions for this type of benefit get overturned at appeal screams absolute volumes that this system isn’t just overly harsh, it’s damn well corrupt. If 75% of any company or individual’s work had to routinely be checked, changed or overturned, you’d be hauled up before your manager or MD before you knew what hit you and you’d be sacked or taken to court for misconduct but somehow, because it’s the government and government-contracted companies, it’s all ok. But there’s no accounting for the human cost in this. I’ve noticeably deteriorated and coped worse with the other shit in my life thanks to this. I’ve seriously considered suicide on multiple occasions, not because I want to die but because I want this to stop and I want to stop feeling like a burden. That’s what depths this system takes you to. Anyone around me will tell you that despite not being an optimist and being a very realistic person, I’m bloody brilliant at making the best of things and being inventive about how to live the best life I can and yet applying for benefits to get money to help me live my life more comfortably and independently has got me to the point where I’ve seriously considered ending it because it feels and seems so unbearable.

I don’t even know how to end this post because I’ve been meaning to write about the process throughout so that you could go on the journey with me but I just couldn’t face it. In fact, the only reason I wrote this was to get my thoughts and feelings out in the hopes that it would make it easier to write my appeal objectively rather than emotionally and in the hopes that I might get enough of it out of my brain that I might sleep properly for just one night. I can’t even remember the last time I did that. The process is shocking from beginning to end from the assessment forms that are so heavily skewed towards physical disabilities with a couple of mental health questions thrown in that they can’t possibly capture what living with these conditions is like to the phone assessment with a nurse who spent almost the entire call emphasising the wrong condition and symptoms no matter how many times I tried to clearly explain what I was claiming for and why, to the decision letters that are filled with grammatical and spelling errors that are clearly created from copied and pasted statements that don’t remotely fit your case and make you wonder if they’re even assessing you, to the pages and pages of written information that you receive that you haven’t got a hope in hell of being able to take in and process and yet you still have to in order to basically beg for some money. And finally, the assumptions they make that because you’re bright and you have a degree that you’re capable of those things now, that you’re making up the disabling effects these conditions have on your life and that although you might “prefer to go outside accompanied” that there’s no evidence that doing so would cause you to suffer overwhelming psychological distress despite being diagnosed with agoraphobia that literally has that as one of the essential diagnostic criteria. I won’t be committing suicide, I’m not letting them off the hook, but this system needs calling out and exposing for the vile, corrupt, hoop-jumping exercise that it is and I’m going to fight in every way that I can to get what I deserve.

Day-to-Day Life With Anxiety

Today I thought I’d give you some specific insight into what it’s like to live with severe anxiety. I often talk in sweeping statements and generalisations and I think people don’t realise what the nitty-gritty, day-to-day life is like because it’s not always rolling from one panic attack to another, it’s much more subtle, specific and random than that. I’m currently going through yet another very bad period of anxiety. I’m never really sure when I’m not going through one of these and the only way of describing the last 6.5 years is bad and worse. I don’t often notice the times when it’s bad until it gets worse and then I can recognise that what preceded was indeed “just” bad but it’s not better and worse. Like pain if you’re still feeling it will always hurt, it’s more and less, but not better. So I’m anxious and more anxious through periods of weeks and months.

As I said, currently I’m going through a particularly anxious period but it doesn’t necessarily look like you’d expect. It does include the typical worrying for hours on end about everything my brain can possibly imagine. It also includes having panic attacks about justifiable things, as well as not. But the things that you’re probably not aware of are what I want to talk about here.

  • It’s being tired all the time but so wired and highly strung that you can’t sleep.
  • It’s being exhausted and unable to keep your eyes open during the day and then your mind racing at 100mph at night and almost being too frightened to go to bed because it’s so severe.
  • It’s feeling sick and a feeling of dread in the pit of your stomach but with no reason or cause.
  • It’s your brain constantly scanning for whatever the threat is and then it picking something at random and fixating on that until it scans again and finds something new.
  • It’s not being able to remember things or take in new information.
  • It’s reading the same paragraph over and over again and knowing you’ve read those words and willing yourself to concentrate and take it in this time and still having no idea what it says.
  • It’s feeling full of completely useless energy and almost buzzing but your brain feeling like a frantic fly that just constantly throws itself at a pane of glass despite being next to an open window.
  • It’s forgetting your medication, day after day, and never managing to put two and two together and realise that you’ve forgotten it and that’s why you’re feeling extra wired and your heart is beating out of your chest.
  •  It’s being hungry and having so many choices for what to eat but spending hours not deciding because none of those things make sense in your head anymore.
  • It’s not being able to multi-task and having to mute the TV or turn it off because it’s too distracting while you’re reading a text or realising that you’ve missed 10 minutes of your programme because you’ve gone temporarily deaf whilst scrolling through Facebook.
  • It’s having so many hobbies or projects that you could continue or start and not being able to pick one.
  • It’s watching stuff you don’t even like on TV rather than stuff you’d love on catch-up or DVD because you can’t commit or decide on those and spending hours watching mind-numbing stuff just because it’s on.
  • It’s aimlessly walking from room to room in the hopes that inspiration will strike and it never doing so.
  • It’s looking out the window and watching the world go by, everyone having a purpose and you just wasting day upon day like this.
  • It’s flicking through recipe books desperately wanting to make something knowing full-well you can’t decide and aren’t capable of making anything much more complicated than toast.
  • It’s having responsibilities or ambitions and watching them fade away.
  • It’s having dreams and goals and watching them fade too.
  • It’s going without meals or eating snacks instead because you just can’t decide what to make and you can’t work out how to do it anymore.
  • It’s wishing that you could have certain meals and knowing that you can’t because there’s no one there to make it for you and you’re not able to do it yourself.
  • It’s losing even the most basic routines that you’ve built up and forgetting to make enough drinks over the day.
  • It’s running out of crockery because you didn’t time the washing-up well enough.
  • It’s remembering and forgetting multiple times a day to do the same chore or send that email or message and realising at 11pm that yet again you’ve not done it.
  • It’s writing lists of tasks to do in your diary each week and writing over 50% of that list again the following week and the week after because you’ve still not done the tasks.
  • It’s forgetting to look at the lists and feeling like screaming because this is so basic and you still can’t do it.
  • It’s checking and re-checking things because you can’t remember the answer and you stop trusting yourself.
  • It’s your tinnitus ramping up to deafening volumes.
  • It’s hearing your neighbours going about their daily lives through the walls and floors and feeling so alone and lonely.
  • It’s wondering how you ever functioned normally and how you ever got a degree when you can’t make a roast dinner or read a book anymore.
  • It’s not being able to write a shopping list.
  • It’s feeling sick at the thought of a timetable because you know that’ll just increase your feelings of failure when you inevitably don’t stick to it.
  • It’s wanting to scream and shout and cry and just sitting in numbness.
  • It’s wishing that you’d die and then instantly panicking and taking it back because you feel selfish and unworthy and you don’t want to cause others pain but wishing that this pain that you’re living with would end.
  • It’s wondering about suicide and realising that you don’t actually want to die you just don’t want to have to live like this anymore and you can’t see a way through or a way out.
  • It’s wondering how you can possibly make someone understand what this is like and then worrying that you will because you know how much it’ll scare them.
  • It’s being paralysed by fear.
  • It’s being mentally stopped from even starting anything because you’re so worried about failing even though you know that not even attempting things is a type of failing.
  • It’s wondering if this is it and if it’ll ever get better.
  • It’s wondering what you did to deserve this.
  • It’s wearing the same outfit days in a row because you don’t know how to choose a new one. It’s not being able to make decisions of any kind.
  • It’s not being able to concentrate.
  • It’s scrolling through Instagram and seeing so many craft projects that you’d love to try and never even trying to start one.
  • It’s being unable to work and having no responsibilities and still feeling like you have no time to do anything and never really ever getting anything done.
  • It’s wishing you could be someone else.
  • It’s feeling guilty all the time.
  • It’s feeling insignificant and over-noticeable all at once.
  • It’s feeling like a burden and wishing you could disappear.
  • It’s being desperate to make a difference, to help people and knowing that even with your limitations you could do it and never quite working out how or where to start.
  • It’s promising yourself over and over again that you’ll change and do things differently and it never happening.

So there you have it, a snapshot into the day-to-day difficulties of life with an anxiety disorder. That list is why it’s so difficult to explain succinctly what it’s like to live with. I don’t have particularly specific sources of anxiety, there are groups of situations I experience huge anxiety about including anything social and anywhere that I could get trapped but those are so huge, wide-ranging and general that it’s hard to give an accurate or detailed picture of what life each day is like and why I’m so unable to do things like sort out my own meals on a regular basis or fill my day productively, the list above hopefully gives more insight into why those things and so much more are so difficult.

Update – September 2020

It’s been an absolute age since I last wrote a proper update. As time passes, I feel like I have less and less to say and yet, so often, I’m desperate to write, to say something, to try to make a difference but I remain silent. I can’t even tell you how many half-written blog posts I’ve started and abandoned. They’re all saved, they all start off with promise, with a point or a purpose and before I know it my confidence dies again and the words dry up and I post nothing. It means that every time I do attempt to post I feel the need to explain, justify, and apologise because I never intended to be so sporadic about posting. I planned to show up regularly, for this to be my space that I’d carved out to inform, educate and share my experiences with the world. But somehow I always talk myself out of it.

However, today I’m here and hoping it’ll be different and that this won’t be left unfinished and saved and never seeing the light of day again. There are so many things going on in my life that it’s hard to even know where to start but the thing that made me open the document and start typing was that I’m getting worse again. I’m sure it won’t last like this, it happens regularly, almost always when there’s way too much difficult stuff going on in my personal life for me to handle, but it never feels temporary at the time. It’s always a shock when I get worse because my daily life is challenging at best and I live with some level of symptoms every day. But when I deteriorate everything is ramped up. Today for example, I’ve had 3 panic attacks and cried twice. Today’s not a special or challenging day, nothing was planned, nothing happened, but I’ve spent the whole day just feeling completely unable to cope. For weeks now I’ve felt like I’m drowning. Most of my waking moments I feel like I can’t get enough air and my sleep is worse again. I feel stressed and on edge the whole time and I’m so irritable and at times I’m becoming aggressive because I’ve just had enough of everything.

One of the biggest contributors to this deterioration is that I finally applied for disability benefits. I’ve put it off for 6 years because I’m so aware of how awful the process is but I was finally persuaded into applying in February. It’s been a long and arduous process. A 40-page form to fill out where I had to detail all the things I can’t do, the things I need help with and the ways in which I fail to function. 4 months later I had an assessment on the phone which was terrifying but I thought it had gone well. 2 weeks after that I got my decision letter through saying not only was I not entitled to anything but a whole load of lies, assumptions and errors which just felt like a personal attack. While I know the system isn’t personal, having it implied that you’re making up the severity of your condition when you’ve been disbelieved about your suffering for two thirds of your life is immensely damaging. It absolutely floored me and sent me into a tailspin. I’ll be completely honest, it made me seriously consider suicide. Thankfully I was able to talk myself round and my determination to fight has returned and so I’m going to do my damndest to get what I know I’m entitled to but my god has it made me ill just trying to keep my head above water. On top of multiple other horrible circumstances I’m living through right now, this was the last thing we needed.

As ever, it just feels like it’s one thing after another. It’s relentless. The anxiety is so ramped up that I’m regularly having panic attacks because of ridiculous things making me jump. Examples just in the last fortnight have included Joe getting too close to me, a seed blowing across the floor, Joe’s shadow, my own hair, the window cleaner, a fly, Joe speaking unexpectedly, and the remote control getting knocked. I spend most of the time, nearly every day at the moment feeling like I can’t cope and wishing I could just sleep. I’m so exhausted and utterly burnt out but I’m lucky if I get 7 hours of broken sleep a night at the moment. My concentration is absolutely shot and I can focus on almost nothing. It’s got so bad that I tune out during conversations or TV programmes that I’m watching because I just forget to listen. My attention span is a few minutes at best so I can do almost nothing. I’ve not done any colouring for weeks. I’ve had embroidery threads out for a project for 2 weeks and I still haven’t even cut the fabric or transferred the design. My brain feels like it’s running at a hundred miles an hour, constantly seeking out new sources of anxiety and fear but never able to settle into anything useful. I long to do one of my hobbies, to be able to do something other than mindlessly scrolling through social media, taking nothing in and just intensifying my loneliness. For weeks I’ve thought multiple times every day about taking diazepam to take the edge off and try to get through a little better because this is just unbearable. It gets so bad that it feels like it’s killing me from the inside out. I know this must sound dramatic but honestly, this doesn’t even capture the true severity of how intolerable and unending this feels. I guess it’s little wonder that in the midst of all of this, receiving an assessment saying that I’m basically fine was the final straw to me being able to fight this latest relapse.

I’ve not really worked out what point I’m trying to make in this post. I always try to have a purpose for them, a specific thing to say or message to impart but right now, I can’t think of one and I’m not sure I started with one in the first place. I guess I just wanted to share what this is like, to explain that 6 years on, it’s often still like the first time, that I still go through periods of my panic attacks ramping up to multiple times a day with no specific triggers or reasons and the little functioning I’ve built up gets torn down again. I always try to give a full and honest picture here of what it’s like to live with these conditions and this is part of that. I can’t go into detail about most of the reasons why things are so hard right now, perhaps I’ll be able to in the future but we’re in for a very rough ride and I’m already really wishing I could get off. I’m sick to death of the existential dread that seems to just shroud me at the moment. I want to breathe normally and freely again and not keep feeling like my heart is about to stop or the oxygen is running out. I know I’ll get through this, I always do but I wish the process got easier and quicker.

Written on August the 27th.

Let Down in Lockdown

Yesterday I got an unexpected phonecall. It was a private number. That always fills me with dread. What I really wasn’t expecting was that during a global pandemic, while my country is on lockdown, my mental health service would phone to discharge me. A lot of what ensued is a blur. I was on my back foot from the start and was just completely stunned that a stranger was calling me and trying to discharge me back to my GP. I’ve not been checked up on during this crisis so when this woman introduced herself and where she was calling from, I was immediately really pleased and impressed that they were phoning to see how I was. They weren’t. In fact, I don’t think I got asked any questions about how I am, how or if I’m coping or if I’m getting enough support. She went straight in for the kill and said they were planning on discharging me. I then spent nearly 20 minutes trying to find out why, what that would mean, how I can stay on their books, what criteria I have to meet, all the while trying not to burst into tears and have a panic attack.

More and more unexpected information came out during this phonecall including the fact that my psychiatrist retired in September or October which I’d not been told. I apparently should have been written to by him but even she couldn’t find a record of that letter on their system. He had, seemingly wrongly, promised to keep me on their books until I was well enough to attend treatment in the future. He’d apparently promised this to a lot of patients, all of whom I’m assuming are getting the same out-of-the-blue phonecall passing them back to their GP with no warning or support. It means that I’ll no longer be allowed to have visits from my support worker, the only professional involved directly in my care who actually sees me and knows what I’m going through and how damned hard I’ve worked despite the lack of visible progress or improvement and who continues to support and boost my confidence and self-esteem and treat me like a valuable human being. She has to work under a clinical lead and I’m not allowed one of those because I don’t fit the criteria and so she won’t be allowed to work with me either.

I know that mental health teams are increasingly underfunded. Before all of this, I worked in one. I know all too painfully the limitations of the services, the understaffing and the squeezing from all angles. I’ve tried to make myself as little of a burden as possible on the NHS and specifically on my local mental health team. I’ve not agreed to appointments unless I really believed I’d be well enough to attend. I stopped booking them when it was making me worse and I was becoming unreliable at attending because I didn’t want to waste appointments that could be given to other people. I didn’t agree to have therapy that I’ve previously had that I knew wouldn’t help me and that again, I wasn’t well enough to attend. All I asked was to see my support worker for an hour every couple of months and to be kept on their books, under a named psychiatrist, so that I didn’t have to wait weeks to be re-referred in the future by a GP surgery where I’ve met none of the doctors and the last doctor I was under kept me on a medication that my psychiatrist described as basically poisoning me with horrendous side effects.

Oddly, this phonecall came the day after I had a completely unexpected letter from the same team telling me that an appointment had been booked for me to have a telephone consultation with a new psychiatrist. I have no idea who booked this or why and the lady on the phone yesterday wasn’t aware until I highlighted it and she checked my records and even she didn’t actually know why it had been booked. I was already stressed and anxious because of this random appointment but it also really upset me and made me pretty angry because I begged to have telephone appointments 5 years ago so that I could still engage with support but not make myself really ill trying to go to appointments. I was always flat-out refused this and told that it was completely impossible. I know that we’re living through “unprecedented times” right now and that people are having to change and adapt their work in order to maintain services during this pandemic but I cannot for the life of me work out how it’s possible, doable, and acceptable to have telephone appointments with a psychiatrist now, when a few years ago it was completely impossible even though that meant that I had to stop having any support from a trained professional because I was too ill to do it in the way that they offered.

All I kept being told yesterday was that their service only offers time-limited, goal-specific help, none of which I’ve ever been well to engage with because the offerings are so limited and are all aimed at people who are much less ill than I am. All I’ve ever been offered (apart from medication which we’ve all agreed I can’t and shouldn’t take again) is 6 sessions of CBT and group art therapy run by a support worker, the same job role I had when I was working. Yesterday, I asked what people like me are meant to do, those of us who are too ill to engage with what they offer and she said there were community treatments, all of which she acknowledged required you to be well enough to physically attend. I’m severely agoraphobic. I can’t go out. So the upshot seemed to be that there’s nothing for me, no service, no treatment, no one to keep an eye on me or make sure I’m not spiralling. No one unrelated to me who I can talk to about how this is actually all making me feel or what it’s like to live like this which actually leaves me with no one to talk to about that because I just can’t bear putting that on people around me. My social network has reduced and reduced over the years of my illness and each time I’m struggling, there are fewer people to talk to and I feel further and further away from them and from normality. I’m good at getting through the day-to-day stuff, I’m great at ignoring my limitations and working within them to the point where I sometimes forget that I’m ill and often forget what I’m not capable of until I’m rudely reminded by circumstance and it all comes flooding back. I don’t have people to talk to about how frightened I am, about how much my belief and hope are fading as each month passes. It’s not because I don’t have people close to me, it’s because I can see how painful it is for them when I talk about these things and I know that what often keeps them going is my grit and determination and continuing belief that I’ll get better. I don’t have the heart to tell them that I don’t know if I believe that anymore and that although I mostly do think that I’ll be better, albeit not cured, one day, that image is increasingly vague and I’ve got no idea of how to get from here to there, what to do to make it happen or when it may occur. Never in my wildest dreams did I think I’d be 6 months from turning 30 and still severely agoraphobic and unemployed. I know I achieve a lot and this isn’t meant to be a pity-party but it’s very hard to keep yourself going, day after day, year after year, when you have to fight for even the basics of medical support and then have that randomly threatened with being removed.

The only reason I’m not now discharged is because of this mysterious appointment that’s been arranged for me. She eventually agreed that I could speak to the new psychiatrist and see what he says and that we’d “discuss it”. So now, I get to spend the next month, waiting and trying to work out how or even if I should try and persuade them to keep me on their books. Because even if I manage to stay this time, how long will it last? It will always be hanging over me. They offer me next to no support and no treatment anyway so in many ways I won’t be any worse off without them. But it feels like I’ll be even more alone, even more adrift and cut off from reality, normality, and help. It makes me sad and angry that people like me are just abandoned. That we’re so ill we can’t function and are essentially punished for that by having accessible treatment denied. So many people have the opposite problem of needing help but not being so ill that it’s deemed necessary and having to wait until they deteriorate before anyone will treat them. Increasingly it seems that there’s a right way of being mentally ill and more and more of us are failing to do it that way and then get denied treatment. I can’t make my illness fit in with the criteria they set, I can’t get myself well enough to attend the treatment that they say will get me better and so rather than bring any of it to me or even keep it paused until a miracle happens and I can get myself there, they decide that I look bad on their books and need to go. I wonder how many people out there exist as I do? I don’t think we’re even counted. They know how many people have a diagnosis, how many people went through therapy, how many people had a psychiatrist. But once I’m discharged, I won’t exist anywhere as a statistic. I won’t be counted as one of the people they failed, I won’t be listed somewhere as one of the people who was so severely ill that they couldn’t be treated. I’ll just disappear. Even statistics for houseboundness don’t seem to exist. I’ve looked and looked over the years and never found anything that even attempts to give numbers to how many people are physically or mentally ill enough that they’re confined to the house. I know there are many of us. The sheer number of people who, well-before lockdown or Coronavirus, were arriving at my blog because they wanted advice or help to cope with being housebound, is huge and I’m just one blogger with a small following and a pretty small reach. There must be thousands of us. But we’re all hidden away and mostly we’re forgotten about and just left. Lockdown has shown just how hard living your life indoors is to the masses. People are going stir crazy. They can’t work out how to entertain themselves, how to stop eating every 30 minutes, how to work, how to get medical help. This has been my life for 6 years and I’ll tell you for nothing, there’s never been a better time to be housebound because of the sheer number of free resources that have been released. So many things have adapted and been made accessible so that life can continue despite us all being indoors and still it’s unbearable for many people. Spare a thought for those of us for whom this is our life permanently, who don’t get to do PE with Joe or have church services via Zoom or watch Andrew Lloyd Webber musicals in our lounge the rest of the time. The majority of the time, these things are completely inaccessible to people like me and now even mental health treatment, in the midst of a pandemic, is being withdrawn because I don’t fit into the box neatly enough. As yet, I’m undecided about what to ask for in this appointment and whether I’ll put the energy into trying to fight or just give in this time because as seasoned readers of my blog will know, absolutely every step of the way, I’ve had to fight to get any treatment or support and I’m so unbelievably tired of doing that and being let down. I always thought that I’d get through this on my own, in my own time and I have no idea if that’s true but it looks like that’s the only option I’m left with and I’ll just have to hope that one day, the solution will reveal itself and I’ll somehow get from here to “better”.

6 Years’ Agoraphobic – Coping with Social Distancing, Self-Isolation and being Housebound: Advice for COVID-19, Anxiety and Beyond

For 6 years, I’ve been virtually housebound suffering from severe Agoraphobia, Generalised Anxiety Disorder and Social Anxiety. It means I’m in a fairly unique and experienced position to advise about the dos and don’ts of being indoors for a prolonged period of time. Below is a long list of suggestions that have helped me and that I hope will help you to cope and keep occupied.

Do remember that this will have an end point. Much as it’s not clear when that end point will be, there will indeed be one and it’s important to focus on that and not get too bogged down or pessimistic. For those who don’t know me, I’ll point out here that I’m not an optimist, nor am I a fan of most self-help stuff because I find it patronising and overly simplistic. I’m not involving myself in the medical side of things because there are plenty of articles already available on this and I’m not a medical expert, but I am an expert in how not to go stir-crazy when cooped up indoors for an indefinite period of time, for reasons beyond your control.

1. Create and Keep a Routine – Getting up and having a routine are absolutely key to keeping focused, motivated and having any sense of what time of day it is. You’d be amazed how quickly those things fade if you don’t stick to at least a few basic plans each day. The absolute musts are getting up, going to bed and eating at set times as those all help to regulate your body clock. Getting dressed and having activities planned for the day are also great for helping you be ready to tackle things and motivate you to get stuff done rather than lounging in front of the TV all day. Writing out a timetable can be really helpful, as well as a list of suggestions for activities and tasks to do if you get bored or can’t think of something to do at a specific time.

2. Limit Accessing of News Updates – It can be really tempting in times of crisis and uncertainty to want to be as informed as humanly possible, all the time. Stop. It’s SO bad for your mental health, won’t lead to you being more informed and is likely to just make you panic and feel sick. Choose your news sources wisely! Don’t take notice of the umpteen viral social media posts written by so-called experts that are constantly contradicting each other and spreading misinformation and worry. Pick one or even a few specific times a day where you will check on these reliable sources and then avoid the rest of the time. If you find this too much, then keep reducing down until you reach a happy medium of informed and calm-ish. If it’s all too much and you want to hunker down, then feel free to avoid all news and stay in your happy place. Do whatever it takes to stay sane and coping!

3. Be Prepared but Don’t Panic Buy! – We’re all well aware of how ludicrous the situation is in the shops right now (at least in the UK) and it’s important to be prepared and to have in the things you need for if lock-down happens or you have to self-isolate. Having enough food and supplies in is really useful but please, please don’t panic buy because it’s stopping everyone from being able to be prepared and causing widespread anxiety. If you’re able to get food in, then a great idea is to batch cook some meals to freeze so that if you become sick, you can eat nutritious food, won’t need to go shopping for a while and can just defrost and reheat instead of cooking when you really won’t feel like it. You do not need 1500 toilet rolls, they don’t taste nice or help your lungs! Make sure you eat healthily and regularly and stock up on some treats too – try to avoid eating all of them on the first day of quarantine!

4. Finances – Money is becoming a huge worry for many. Try to avoid burying your head in the sand and work out exactly where your family stand and look into what help is available to you. Making a spreadsheet of current expenditure and income can help you identify areas to cut back on, as well as showing you your budget. This puts you in the best position to act quickly and pre-emptively if things are going to worsen for you and could help you avert a crisis. The finance situation is different for everyone and changing daily so keep researching and applying for all of the support available to you and remember that even small changes can build up to make a big difference.

5. Social Contact – While we’re all having to avoid physical contact with people outside our household (and inside for those self-isolating), we don’t have to be isolated from all contact. Phone calls, emails, video calls and group chats are just some of the ways in which we can continue to socialise. Talk to people about how you and they are feeling, give each other tips of how to pass the time and talk about anything other than the virus when you can! Check in with others who you think might be struggling and rekindle friendships that fizzled out due to lack of time – there’s an abundance of that right now. Setting up cyber groups is another way of doing joint activities whilst being socially distant, things like film nights, book groups, cocktail evenings, lunch dates, debates and more can all be done via video chats or cyber groups to keep you involved and connected with each other, sharing activities and combatting boredom.

6. Plan for the Future – During scary times, it can feel all-consuming and never-ending but this will pass and there will be light at the end of the tunnel. In order to keep focused on that and to keep you getting through all of the difficulties and things you currently can’t do, rather than focusing on what you’re missing, put all of those things and the things you’re looking forward to doing once this is all over, into a list. Keep adding to it each time you think of something new and it’ll give you all sorts of ideas for how to fill your time once this period of isolation and restriction comes to an end. It’s highly likely to increase your enjoyment and gratitude for the ability to do those things once you’re finally able to again. I never get over the novelty of feeling the wind on my face having spent the majority of the last 6 years indoors.

7. Use this as an Opportunity – You’re likely to suddenly have a lot of time on your hands and while that might seem like a dream come true, the novelty quickly wears off. Rather than letting the boredom set in, use this as an opportunity to get tasks done that you’ve been putting off, to learn new things, to start something that you’ve always wanted to and even to re-evaluate your priorities and make changes to your life. It’s easy to get caught up in the day-to-day busyness of life and forget that we can change things we don’t like and put more time into the things we do and now is a perfect opportunity to start making that happen.

8. Look After your Mental Health – This is crucial! A lot of us who have mental illnesses, have strategies and coping mechanisms to keep our symptoms at bay and enforced time at home may be restricting your ability to do some of those things. Even those who don’t have mental illness may well have things they do that keep them calm, focused and able to cope well with daily life and being indoors for prolonged periods of time is likely to have quite a profound effect on your mental wellbeing. My key suggestions would be to talk to others and tell them how you’re feeling, share tips on coping and activities to pass the time and set goals together that you can help each other achieve. Being at home can be extremely lonely and isolating but you don’t have to be mentally alone, there are a lot of us out there all in this together so head to your contact list or social media to find others to connect with and you’ll realise you’re not alone in finding this hard and that might just make it a bit easier. If things get really bad then reach out for professional help, it’s still accessible especially over the phone and online, so don’t suffer in silence!

9. Help Others – If you’re feeling bored or have any skills, services or supplies that you could share with others in order to help them then do it! Helping others is a great pastime as well as building community spirit and connectedness. In times like these, even small gestures can make such a huge difference and they help us see the wider picture of us all being in this together. Obviously, maintain social distancing whilst doing this.

10. Be Creative – As you’re likely to soon find out, there truly are only so many hours of daytime TV and trips to the kitchen to check the fridge for snacks, that one can take before wanting to climb the walls. Therefore, creating, rather than consuming, is a great way of getting out of that cycle and making your day better. It doesn’t have to be drawing or painting, it can be literally anything from writing a poem to building a shed, taking photographs to making up a dance. Anything that involves you making something or changing it and using your hands and your brain to produce something, will do just fine and it’s great for giving you a sense of achievement too because you can see the result of your efforts at the end.

11. Keep Fit – You might have to get a bit inventive here and try not to annoy your neighbours (especially those of us in flats/apartments) but getting your heart rate up and your blood pumping is a sure-fire way to help clear your head and get rid of excess energy and anxiety. If you have home exercise equipment then use that, if you’ve got a garden then get out there and run, play with a ball or even skip. For those of us who only have indoor space we’re a little more limited but thanks to the wonders of the internet you can find free workouts, yoga and Pilates tutorials, dance classes and more. You could do strength training if you’ve got weights and if not, get out some of those stock-piled tins of beans and use them instead. If motivation is tricky, then get your friends involved and hold each other to account or even video chat whilst you all do the same workout and cheer each other on!

12. Avoid Substances and Bad Habits – It’s a really tough time for everyone and it can be all too tempting to look for ways of escaping difficult feelings but leaning on substances or bad habits will only harm you more in the long-run. Try to avoid alcohol, comfort eating and any other self-destructive behaviours and talk to others if you’re struggling to manage. Keeping busy is the key to getting through as unscathed as possible.

13. Free Activities and Resources – Companies and individuals are offering free services, resources and activities, with new ones popping up daily for kids and adults worldwide. There’s everything from fitness routines to tours of zoos and museums, education and language-learning resources for all ages and abilities, colouring pages, recipes, courses and qualifications and so much more. Now is the time to start looking into all of the things you always wanted to do and never quite made the time for, be it learning sign-language, pasta-making, or crochet, there are guides to almost everything, if you look.

14. Change your Environment – If your country allows and you feel it’s safe to do so, then go outside to an open area, staying 2 metres apart. If you’re lucky enough to have a garden or a balcony then use that regularly. If, like me, you don’t have outdoor space then you have to be more creative. Watching nature programmes and documentaries is a great way of seeing outdoors without actually being out there and opening windows as often as possible to get fresh air in is really beneficial. Even just changing rooms or sitting down the other end of the sofa is better than staying in the same spot for days on end. You could redecorate or rearrange some of your living space to freshen it up and make it feel different and new. Keeping your curtains and blinds open and making sure you get enough daylight will help your mood, sense of time and your sleep pattern and although you may not notice the benefits, you’ll certainly notice the deterioration in all of those things if you keep the light out. Another great way of getting the outdoors indoors is to grow something. It’s very therapeutic to have a plant to look after, it’s good for air quality, and it can even be useful if you grow something edible – my personal favourite is chilli plants which grow pretty quickly and easily and can then be added to my cooking or saved up and made into chilli jam.

15. Working From Home – For those of you who are unexpectedly working from home, try to keep a distance between work and home. If possible, keep your work to one area of your home, keep it to specific times and outside of those don’t be tempted to check emails or do extra unless you absolutely have to. Psychologically, it can be hard to keep a mental distance when there’s little to no physical distance but our brains are really good at picking up on cues so setting routines and times that are similar to your regular work schedule and even changing clothes, eyewear or hairstyle so that you have ‘work’ and ‘home’ versions could make the difference between feeling like your work is never finished and being able to fully enjoy your free time. It requires discipline and it’s not easy but having separation really helps you to focus on the task at hand and then let it go when the time for that is over.

16. Tune Out – Although most of the things I’ve suggested involve ‘doing’ stuff to keep your mind and body occupied, you sometimes need to just ‘be’ and that’s just as important. Write a list of things that help you relax, calm down, and zone out, and plan those in so that you’re not exhausted from too much ‘doing’. Anxiety, stress and worry are exhausting, trust me, I live this every day and it’s really tiring and you’re likely to get a lot less done than you’re planning or hoping. Try to be ok with that. Plan in regular time to just ‘be’ and you might find that the rest of your time is more productive because of the breaks you’ve taken. Similarly, if you’re religious, spiritual, or have regular practices like mindfulness, meditation, or relaxation, then ensure that you’re still building that into your life, even if it means using alternative methods to access it. You’ll need periods of escapism too and reading, audiobooks, gaming and passive TV can all provide this and give your brain a much-needed break.

These are frightening and uncertain times but hopefully by following some of my suggestions, you’ll keep as calm, occupied and content as possible, until freedom is restored.

For specific, anxiety-related tips on how to cope with being housebound, you can find my post written 14 months in here.

Random Mood Drops

It doesn’t matter how many years go by of being mentally ill, there are some things that surprise me, no matter how many times they happen. One of those is the random drops in mood that occur for literally no reason. As I write this, I’m on the verge of tears and have that, oh so familiar, heavy, rock-like sensation dragging down in my chest as if my heart is made of stone. I can physically feel it. This has always been the most persistent and long-lasting symptom of my depression. Depression for me was never just sadness, or numbness, it was the weight in my chest that got heavier and lighter but that never went away. I’ve had it since I was 15, 12 and a half long years and there’s not been a day that I can remember when that weight in my chest has gone. My depression is now mild, it remains very stable and manageable thanks to a lot of work on my part to keep it at bay and not let it rise up or take hold of any more of my life than it already has its grip on. But every now and again, for no reason at all, the weight in my chest exponentially grows and it physically hurts. It makes me want to curl up into a ball, go to bed and sleep for days or burst into tears. I instantly want to self-harm again despite not having done so in years. It makes me feel sad and guilty and angry and overwhelmed about everything and nothing.

Despite dealing with this so many times and for such varying periods, it’s still a shock every time. I never get used to it. I still can’t ever find a reason why it happens. It just does. It just is. It takes my breath away with how fierce and strong it is. It’s like someone sitting on your chest, you can’t breathe, you can’t think or concentrate. Everything suddenly feels pointless and dark. Breaking out of this is hard, each and every time. There’s no reason so there’s no specific fix or problem to solve. It just is.

Today, I’ve had a good day. I spent time at my Nana’s helping her clear out her house and tidy up. We had a lovely time and some really nice conversation. I was tired when I got home and slept for a bit. I felt much brighter and perkier after that but quickly my mood just dropped. Nothing happened, nothing that I can identify caused it. My mood just dropped off a cliff and here I am, feeling sad, feeling weighed down and already struggling to remember feeling better or brighter even though I know I did just a few short hours ago.

Although it shocks me every time, I have at least learnt to stop being scared by it because I know the feeling will pass. I never quite know when or how and occasionally it lasts for a couple of days but usually sleep, distraction and care from my loved ones helps pull me back out of the pit and gets me back on the even keel that I’m used to. Hopefully the feeling will pass quickly this time and the mighty weight that’s currently in my chest will go back to being pebble-sized. I’m not sure if these random mood drops will ever stop, they seem to be very similar to the random attacks of anxiety about nothing that I also get. It’s so disconcerting not knowing why or how something has occurred or when it’ll go or when it’ll next come back. It’s horrible feeling so vulnerable and not having control. Hopefully tomorrow will be a better day.

Update – Caring for Relatives, Life Changes and More (1st May 2019) – Video Post

This video was recorded on the 1st of May, 2019. It provides an update on where I’ve been, how I’ve been and what I’ve been doing that’s kept me busy and away from recording or writing. I talk about being a carer for my Grandad and what life is like now I’m not one anymore and how lost I’m currently feeling.

Five Years On – Five Years Of…..

I never know where to even start these posts. You all know by now that I’m one for anniversaries but as more of them pass, I’m increasingly put off and seem to mentally avoid them. I haven’t even known what to title it because how on earth do you sum up five years of being ill? How do you title something detailing what it’s been like to be unwell for such a long period of time?

Whenever I write a blog post, I try to have a plan. I’m quite a spontaneous writer, I break all of the writing and blogging rules about having a word limit and a posting schedule. As you’ll have seen, I post as and when something comes to me and sometimes that’s multiple times a week and other times I go for months without having anything to share at all. But, I do usually have a reason to post and something specific I want to say and that’s why these anniversary posts are so difficult to write because usually the only reason to write them is the date and because I feel I ‘should’ have something to say rather than actually having anything to say.

For the most part, I try to ignore the time of year, ignore the dates and don’t let them mean anything. But five years feels like a hell of a milestone and feels like I really should be saying something even though I don’t actually know what that is. My life is currently in upheaval with a huge amount of change going on and even more on the way. My grandparents who are a huge part of my life and who I’ve spent increasing amounts of time with over the last few years are moving away, it’s not that far but for me it’s a world away. I’m currently at their house at least 4 days a week, for about 30 hours as I’m a carer for my Grandad and in the next few weeks they’ll be an hour’s drive away and I currently can’t get there. I may discuss all of that at a later point but those are the basics and it’s the reason why I’ve been so quiet on social media and my blogs and YouTube Channel because all of my mental capacity is taken up being there or processing everything that’s going on and changing. It’s a hell of a lot to take in.

In some ways, I’ve been really glad of the distraction because although I’ve noticed the date approaching of me being ill for five years, I’ve not really had a chance to focus on that or be sad or really feel anything about it. I’m quite grateful for that. Five years is such a long time, it’s over a sixth of my life and I still don’t know how or when I’ll get better. Being a carer and being needed has definitely helped me to push myself harder than I thought it possible to push and I’ve certainly been noticing the changes that that has caused in my confidence levels and belief in my ability. However, it’s a very specific set of circumstances that those changes have occurred within and I feel very worried and doubtful that I can translate those to any other situations. I’m not being negative, I’m going to do everything in my power to continue to go out and not go backwards when my grandparents move and I no longer ‘need’ to go out but even though I’m managing that, I still can’t just make myself go for a walk or set foot inside a shop. There is such a mental block in my brain and somehow ‘needing’ to do something overrides that a bit but as soon as the task is a choice, I can’t do it. Even artificially ‘needing’ to do something isn’t enough to make me go. There are so many things that I want to do but wanting it isn’t enough to get me out of my front door. The situation with being a carer for my Grandad seems to have special status in my brain and overrides all sorts of things that little else manages to do. Mostly I’m just grateful that it has, that I’ve been able to build up my confidence and start meeting new people (the other carers on the team) and for it not to be so obvious outwardly that I’m suffering so badly with anxiety.

I do worry a lot at the moment about how I’m going to cope once my grandparents leave though, everything in my own life has been on hold since before January because I just can’t concentrate on anything else and some time soon, they just won’t be here anymore and I’ll go from every waking hour, and many asleep hours too, spent thinking about them to this void where they’ll be gone and my brain will probably still be so full that I won’t be able to do anything to redirect or distract myself. I’m trying really hard to be kind to myself, to be forgiving and accepting and just let myself feel whatever comes up but oh my God, it’s exhausting! My emotions are all over the shop and I can’t keep up. I’ve always been quite emotionally stable, often not in a great way but still, I’ve always felt quite stable and so I never know what to do when these periods of turmoil come up and not only is everything in my life changing, I’m also all over the place with my feelings about it all too. I’m worried about the time immediately after they leave. I have so many things and activities and projects to work on but they all seem to require concentration and even the most basic levels of that are out of my reach at the moment. I keep wanting to record videos explaining what this is like to live through because I know I’m not alone in experiencing this but I never get as far as even setting up a tripod and always remember at ridiculous moments when it’s not appropriate to be filming. I also have no idea what would come out of my mouth which is the status quo for me but when my concentration is off, it’s even more of a surprise and I feel like a liability so I tend to just avoid all of that. At least when writing a blog, I can edit it and take chunks out if I really need to, though that is something I try to avoid as I don’t like filtering things.

As you can probably tell, my brain, my thoughts and feelings are all over the place and my life circumstances are too, there is so much change coming up and I don’t know what’s happening from day to day, let alone from month to month. I have a lot of hopes about things I want to do and things I hope to achieve and I’m hoping that maybe once I have more time to myself and once my brain has finally cleared a little that I might be able to concentrate and focus and achieve some of those things. I’m hoping I might also be able to make some more significant and sustained improvements that aren’t so situation-specific. That’s a lot of hoping right there but that’s something I’ve learnt throughout being ill, I can’t plan, I can’t expect or demand but I can hope and I put all of my energy into that and then trying to make those hopes come true without placing expectations or time limits on it. It means that I’m always working and travelling in the right direction and not failing just because I’ve not achieved something yet.

Five years on, I’m not where I hoped or expected to be, but I’m still here, I’m still fighting and that’s enough for me.

Finding the Words

Finding the Words

I don’t even remember the last time I wrote a blog post. I keep meaning to. I keep trying to think of things to say, important messages to impart. Something. Anything! And I never even get as far as opening a Word document. Nothing comes in to my head and my mind stays blank.

So what’s changed? Here I am writing and you’re there reading. Well, I decided to take a different route and think about why I had nothing to say. After all, it’s so unlike me to not have something to say and not be full of ideas, I’m usually exploding with multiple projects and picking one is what I find hard. The reason I’m struggling so much is because my brain capacity is taken up elsewhere and I’m pretty rubbish at multi-tasking. As many of you know, I’m a carer for my Grandad and have been for a number of years but the time I put into this has drastically increased since Christmas. When I began, it started at 2 or 3 hours a fortnight and over time it gradually increased to being there up to 2 days a week for a few hours each time. By Christmas, I was there about 4 days a week and by January I was there 5 days a week including all day on one weekend day. As of this month, I’m due there 28 hours a week. There are so many changes, so many things to think about and work through and take in. I’m coping surprisingly well, I’m actually really proud of how much I’m taking it in my stride but it’s definitely come at the cost of me focusing on anything else. I can’t concentrate at all. My brain just feels like mush. I spend hours every day just staring into space and thinking about all of the things that I could and should be doing and yet never quite getting as far as starting any of them. Most of the time I don’t even know where to begin. It’s making it really hard to get on with stuff, to do anything particularly normal or anything that involves any sort of brain power.

I keep trying to think of things to say, topics to write about and ways in which I can help others by writing. But I just draw a blank the entire time. In fact, my brain only seems to think vaguely clearly when I’m actually at my Grandparents’ house and doing my job there, the rest of the time it’s like it’s on standby or something. I’m hoping that just by writing something, that this might help jump start my mind into thinking about things to write and not finding the whole task so overwhelming. I miss having a voice, I miss speaking about these issues and talking to people who are like me, who understand what it is to go through these conditions and these experiences. But I guess my mind’s way of coping with the difficult things I’m dealing with in my personal life is to shut down from everything else and just focus on the one issue. Nothing else manages to creep in. I have a lot of free time outside the time that I spend with them and yet I still don’t manage to keep on top of emails, remember to message friends back or keep on top of the washing up. I feel like a failure, like a burden because despite the fact that I’m working fewer hours than my partner and that this is by far the most hours I’ve worked during the 5 years I’ve been ill for, I still suck at being a housewife, I still can’t do even basic tasks and he still has to help or do so many things that just shouldn’t be his responsibility. It’s really hard to know where the line is between what I should and shouldn’t be doing and I know I have to be really careful not to push myself too hard because despite not coming out the other side yet of the breakdown I essentially had 5 years ago, I know I could have another one now and possibly get even more ill than I was when this began. I can’t afford to do that. I couldn’t cope with that. So I’m trying really hard to be kind to myself to do what I can and accept what I can’t and to ask for help with the multitude of tasks that evade my abilities. It doesn’t come easily.

On top of all of this, my memory has got way worse. This is a particularly cruel blow and makes everything so much harder. I’ve always had a fantastic memory and I miss it so much whenever it drops and it’s the worst it’s been for months at the moment. I have to write everything down and then have to try and leave the writing in obvious places so I actually remember to read and work through the to-do list. Even basic stuff that would usually be so obvious to me just isn’t and doesn’t get done unless I’m reminded by a list. I think old age is kicking in at 28! I jest. I know that this is one of the brain’s protective mechanisms and that it’s also a sign that although my body feels ok, my anxiety levels aren’t increasing and I don’t feel physically sick the whole time, I’m only really holding on by my hands now. I’m definitely not at fingertips point, I’ve got a fairly good grip of things at the moment but it wouldn’t take a lot for me to become distracted and my grip to loosen and the whole situation to become WAY more precarious. It’s a weird place to be. I would have expected to be feeling horrendous. I’m under a lot of pressure, there’s a lot resting on me and my family are currently reliant on me being able to do the shifts I’ve signed up for because none of the other care team members can do those at the moment. Normally, pressure is my absolute nemesis. So I’ve certainly been wondering if I’m finally getting better. In some ways I think I might be. I’m certainly coping better with this whole situation than I was and finding it easier and more comfortable to travel to my grandparents’ and to be there. I’m sure a huge part of that is that I’m finally now desensitised to it and that after the umpteenth time of going, it’s got easier. It’s also partly because I’m needed. I take a lot of responsibility for things and if I’m given a task then I’m not one to drop that or not do it properly, I always do things to the best of my ability and won’t let people down unless I absolutely have to. I’m needed at the moment and I can’t let them down. But it’s also very apparent to me that I’m still very ill. Even though I go out 4 or 5 times a week to my grandparents’, I still can’t go into a shop. I still can’t just go for a walk randomly and I still can’t take my bins out. It’s ridiculous and makes absolutely no sense to me but that’s something I’ve certainly learnt about these conditions, they don’t conform to a set of rules and there’s no guessing what will or won’t change at any given time or for any given reason. I’m better at being able to go out to my grandparents’ house, to spend time there and remain calm, even when difficult circumstances arise there, but the rest of my life and capacity seems to be on hold and so all of my resources are being used up there leaving me with nothing left for things at home. This is alright for the short term and we’re trying to put things in place to allow this to not become a long-term thing.

I often wonder how I’ll be when the need for me comes to an end and I’m back to having unlimited free time and nothing specific to fill it with. I don’t cope very well without a project. I really hope that the words and ideas will have returned to me by then so I can take time to readjust and express what this has been like and process the difficult parts. I hope I can continue to be a voice for the mentally ill and for myself and that inspiration will strike soon. I really miss writing, I miss expressing myself and I miss making a difference and I hope that I’ll be back to writing and recording videos again soon. I hope I’ll be able to get back to colouring and writing reviews and being more productive but right now, my brain is mush and getting any words out at all is more than I’ve managed in months so this jumbled stream of consciousness will do for now.

If you’ve got any suggestions or requests for ideas of things to write or video about then do get in touch because I’m absolutely open to ideas and seeking inspiration from anywhere I can find it!