Dear Psychiatrist – July 2018

Earlier this year, I was sent a letter by my psychiatrist stating that it had been 2 years since our last contact and asking me to update him about how I’m doing and whether they can provide any help. I struggled with this. 2 years is a long time, especially when you hadn’t realised it had been that long and trying to put down in words how I’m doing, how I’ve changed in 24 months, has been really difficult and something that actually made me quite anxious. This might surprise many of you because I blog and vlog about it (albeit not very regularly) but those are done on my terms, they’re about topics that are important to me, at a time that suits me, when it feels right. And often, I take months or even years to hone posts and finally share them with the world. I had originally planned to write the letter the same week I had received his but somehow weeks went by and after writing two thirds of it I just drew a blank. Much as I’m always open and honest, I don’t think on a day-to-day basis about how I am. It’s a running joke with my Nana and close friends that I really have to think properly when they ask me how I am because I’m so used to either saying I’m fine or people not even asking. Seeing how I am in black and white, in polarised terms about improvement and deterioration isn’t easy and having to face the fact that I expected to be back at work and well by now, or at least well on my way there, has been really hard. I had no intention of showing this letter to anyone other than my psychiatrist, and Joe, who I got to proof read it and check it was accurate. It was Joe who suggested I should share it here. I’ve been quite reluctant and despite getting him to take it in to my psychiatrist a few days ago, I’ve just had the Word document sat open on my laptop, not quite ready to post and not quite ready to close it and file it away. It’s nearly 1am and for whatever reason, I’ve finally decided to bite the bullet, to listen and trust in Joe’s wisdom and share this here now. In some ways I think it makes me sound worse than I am but Joe thinks the opposite, that depending on what people focus on in my words, it may well give a less accurate picture and sound like I’m better than I am so hopefully you’ll read it just as it is, the good and the bad, without giving one more weight than the other. I often think that I’m so used to this now, so used to being ill, that I can no longer give an accurate picture, no longer compare to “normal”, or life before these conditions because the memory of that is so faded and distant. Hopefully it’ll give you a bit of a picture of how I am now though and another snapshot into my life.

 

Dear Psychiatrist,

Thank you for your recent letter. Sadly, there isn’t a lot to report in terms of progress or improvement. When I wrote to you 2 years ago, I fully expected to be well on my way to recovery by now but that hasn’t been the case. Having now been ill with these conditions for over 4 years, I’m starting to notice patterns of improvement and deterioration though I seem to have little to no control over these. Certain times of year are worse for me due to increased external demands and I struggle greatly when under pressure or when demands are placed on me. Having said that, I’m doing well at maintaining a mostly positive mood and keeping my depression at bay. I do my best to keep busy and keep my mind occupied with productive tasks so I get a sense of achievement and satisfaction. I do a lot of creative activities including baking, crochet and adult colouring. I am also doing what I can to help others suffering from mental illness and run two blogs and more recently a YouTube channel where I am constantly pushing my boundaries in order to create content to raise awareness, increase understanding and decrease stigma. I remain motivated and hopeful of recovery.

I am also a carer for my Grandad who has Alzheimer’s and go as regularly as I can to my grandparents’ house nearby to look after him. Despite them living in their house for my whole life and me visiting on a weekly basis, my anxiety about doing this has not lessened. For periods it seems to ease up and then comes back with a vengeance and I can identify no reasons for either the positive or negative changes. Currently, I’m feeling more capable and confident whilst at their house and am worrying for less time beforehand and it’s not as severe which is a welcome improvement. I don’t know why this has changed and sadly in the past this has always been temporary but I’m enjoying it while it lasts and trying to maintain and improve my abilities as much as possible whilst not getting my hopes up too high that this will last this time. My IBS has been exacerbated by the anxiety and fairly regularly leaves me unable to leave the flat even when I feel mentally capable of doing so. Last January, I bought a new camera and took up photography. This has been a great tool for helping me stay outside and remaining calm for longer because it provides a great focus and distraction and also requires concentration to get good shots. There are times when I can go out for hours taking photographs with Joe or my mum but it doesn’t get easier and has no consistency; almost every time feels like the first time when I’m trying to get out of my front door. I know the research says that practice makes perfect, that systematic desensitisation will work but that really isn’t my experience though I do still persevere and fight as hard as I can to do as much as possible as often as I can.

The focus of my anxiety seems to periodically shift with one aspect easing up while another gets worse so as soon as I seem to learn a strategy to reduce one lot of anxieties, another lot pops up. For the last year, I have struggled less with being outside in people-free areas thanks to doing photography but I’ve become increasingly anxious about health, getting ill and getting food poisoning. My eating habits have changed, I’m much more cautious about what I eat and have a huge fear of being around anyone exhibiting any symptoms of illness, even a cold. It’s exhausting trying to keep up with the constant changes and having to explain these to others while not even understanding them myself.

In terms of help, if there’s anything I can be offered either in my home or remotely then I’d really like to know. I stopped the therapy I was having via Skype over 18 months ago as it really wasn’t helping and I was making no progress so I’m now dealing with this pretty much alone apart from the support from a dwindling number of relatives and friends. I’m doing a very good job of getting through each day, albeit with a huge amount of difficulty and discomfort but I’m not improving, just changing and trying to adapt to each change. My Support Worker still visits occasionally and I really appreciate those visits and very much look forward to them, I really hope they can continue. Although I’m not improving, having a professional to talk to and check in with and also have a link back into psychiatric services when I’m well enough again to attend appointments is really important to me. If you have any suggestions of things I could be doing to help myself improve then I would appreciate them, I am nowhere near well enough to attend group therapy or any kind of appointments, as I mentioned before, I still struggle every time to visit my grandparents at set times and any kind of deadline or time pressure causes me overwhelming anxiety and increased IBS symptoms and attacks, but if there are any self-help tips or resources I should be made aware of then I would really like to know.

Just to make you aware, my GP has now left my surgery and I don’t know who I’m under the care of now, I’ve not met any of the doctors currently practising there. I do not want to be discharged back to their care and wish to remain under yours so that I don’t have to go through the lengthy waiting list process again when I’m eventually well enough to attend appointments and engage with services. I know you’ve not suggested discharging me, I just wanted to make it very clear that my wishes are to remain within your services.

Kind regards,

Lucy

Radio Interview about Anxiety with BBC Radio 5 Live

Today I was woken up by a phonecall that I very nearly didn’t answer because I assumed it was a spam call. Luckily, my curiosity got the better of me and I picked up and was asked if I’d like to interviewed as part of a discussion about anxiety on BBC Radio 5 Live. I always jump at the chance to talk about mental health and raise awareness of these conditions so I agreed and you can hear my interview below. It’s available for 29 days.

Skip to 07.33 for the start of the discussion and 15.01 for my part.

Do let me know what you think!

https://www.bbc.co.uk/programmes/b0b48l2m

Two Years On – Two Years of Trying

You all know by now that I’m one for anniversaries. It’s not deliberate, I just have a really good memory for dates, plus this one is etched onto my brain because I’ve had to fill out so many forms declaring how long I’ve been ill and off work for that I’m not sure this date will ever leave my head. March the 24^th 2014, the day I stopped coping with life. Dramatic isn’t it?! But that’s pretty much what it is. I don’t want to focus on that today though. My way of dealing with things, my way of looking at this condition, at my life, at the challenges and adversity I face each day has really changed, I can’t pinpoint when, why, or even particularly how, but it has changed and I’m going to take this post in a different direction from the one I’d have expected last year. I re-read my post One Year On – One Year of Fear, a few days ago and it was fairly depressing. Not what I wrote, though it certainly wasn’t cheery content, but it was depressing to read how I was then and what I hoped would be the case for today, one more year on. It was disheartening to realise that I’m actually worse than I was then in many ways. I can do even less, I go out even less, my social circle is even less. I thought I’d have improved by now, I thought I’d be getting my life back on track and for a while I did make some small improvements, I was able to go out a lot more regularly, I was pushing myself so hard to do more and more things that scared me, it wasn’t difficult to find things, almost everything scares me. Then I deteriorated in October after being put under too much pressure and my condition decided to fight back hard and I was the most housebound I’ve been, completely unable to take the rubbish downstairs, fearing anyone buzzing our door, having panic attacks before phonecalls and only being able to visit my grandparents once a fortnight (a place I’ve known my whole life with people who were at my birth) and suffering severe anxiety ahead of time. I was utterly trapped, not only physically by my condition and within the walls of my flat, but now almost entirely mentally too because for months I’ve had nightmares that include anxiety, I worry about anything and everything and even get anxiety for no reason where I’ll just feel anxious and have anxious thoughts about nothing.

Despite all of that though, despite all of the trapped-ness, the pain, the worry, the wondering, I’ve been doing something that has challenged me, that has forced me to face my anxiety head on and that has scared, overwhelmed and taken over my life more than I thought it ever would. Blogging was never something I wanted to do, I never thought I had something to offer or even write about, for those of you that don’t know, the only reason I started was to satisfy some particularly persistent and vocal (in a good way) relatives and friends who weren’t taking no, or my lack of assurance in the idea as an answer. So I eventually gave in. I will never be able to thank them enough for pushing me in this direction. The course of my illness, the course of my recovery has changed all because of them believing in me and believing I had something to say. Blogging has been an absolute lifeline for me. I have very little going on in my life in the real world, I don’t have an awful lot to look forward to, my progress in terms of recovery is almost non-existent, but online all of these possibilities have opened up. I can help make a difference, I can have a voice, I have a cause, I can do what I was put on this earth to do and help people, all with the aid of my laptop and an internet connection. It’s given me a purpose, a reason to get up in the morning and probably best of all after the opportunity to help people, it’s given me more friends. I’ve met so many amazing people who follow my blog, who share their colouring with me, share their stories with me, who comment on posts when I’m feeling rough or post pictures to cheer me up, I have a whole community of people who want to help each other and it’s wonderful to be part of that. I’ve also made 3 amazing friends who I hope to be able to call friends for life now. Two of them are reviewers and though we’ve never met, we have so much in common and their support, conversation, humour and friendship have been absolute lifesavers through the countless times I’ve considered giving up blogging and throwing the towel in. They’re probably sick of me thanking them and it’s probably lost all meaning but I truly can’t thank them enough for everything they’ve done for me, they won’t even realise the extent they’ve helped but my family and friends do and we all thank you. I’ve also made friends with a fellow colourer who sends me a photo almost every day, we’ve never met but when I’m better we’re going to colour together, go button shopping and eat ice cream. Those sound like simple things but to me those things are the world because they’re currently so far out of my reach. Blogging has helped me connect with people who understand, who help pull me through and who give me things to look forward to in the future.

Two years on, two years of being predominantly indoors and I’m pretty used to it. It doesn’t upset me every day, I don’t pine for the life I had so much anymore because it now feels so far away, so distant, that I no longer remember what it felt like. I’m so used to being housebound, to being anxious and scared that I can no longer imagine living a ‘normal’ life because I have no idea how I did that in the first place. Despite living through it, I don’t know how I got from that functioning girl who was going to change the world, who grinned from ear to ear walking across the stage at her graduation, who worked in a high-stress job that most people wouldn’t even attempt doing, to this. This anxious creature whose first thought is to worry and wonder ‘what if?’, who fears almost everything and who can only just cope with everyday tasks and still can’t manage basic things like planning meals or working to a schedule.

Despite all of those things, all of those difficulties (most of which I’ve never even mentioned because I’m too embarrassed to admit them), I try to push through, to keep myself motivated, working towards something and being useful in some way. In the last year I’ve learnt so many things, talked to so many lovely people and realised just how widespread mental illness is. Despite having very little self-belief, I’m gradually starting to realise that I do have the ability to write and that this is something I can offer whilst I can do little else of use indoors. I’m starting to feel like I’m not wasting my time and I’m incredibly determined to have something to show for myself at the end of this period of extremely limited functioning, however long it may be. I will not become another unemployed statistic who can’t get a job because they were too ill to work for a time, I will not fit the hugely stigmatising stereotype people have of the mentally ill that we’re lazy and work-shy and don’t try hard enough to ‘snap ourselves out of it’, I try all day, every day and some days the amount of effort and determination it takes me to go for a walk or visit my family on rare occasions is the same amount of effort I have to muster to get myself out of bed and not just cry or contemplate suicide. None of this is easy. It doesn’t get easier over time. In some ways I’m used to this, I’ve adapted to it, but it’s still painful every day. Every day I have to fight with my own mind to not label myself as a failure, to not give up even though I’m running out of answers to the incessant question in my head “What’s the point?”. I make myself have a goal, I try to help people in whatever way I can and every time I get an email or a comment from someone saying they enjoyed my review, or the book they bought on my recommendation is their new favourite, I feel that little bit more hopeful and it becomes a little easier to get out of bed that day, to keep going, to keep doing, to keep living this groundhog day of repetitive worry and anxiety and lack of progress because if nothing else, at least I’ve made a difference in someone else’s life.

I’m not going to put myself through thinking about the year ahead, it’s too difficult to focus on the all-too-real prospect that I may get to year 3 and still be blogging about lack of progress. I’m also learning from my mistakes and I’m not going to put down hopes either, even small ones like I thought I’d done last year because even those I haven’t actually managed to achieve and that just sets me up for failure. I’ll leave you with my plan instead because I only make plans that I think I can realistically achieve. I plan to continue blogging, to continue trying to learn new skills so that I have a whole new section to add to my CV when I can eventually, hopefully, start applying for jobs again. My biggest plan is to continue trying to help people, to reach out to other people like me, who are struggling with their lot in life, and often with their very existence, and let them know that they’re not alone, that there are countless other people out there who are struggling too and that together we can help each other through until the days are a little brighter. I don’t know what the year ahead will involve, or what it will bring, the idea of another year, even another day of feeling like this scares me to the pit of my stomach, but one thing I can assure you of is that I will be trying. Trying all day, every day, striving forwards, pushing to succeed and taking each day, hour and even minute as it comes in order to get through to the next one in the best shape I can. Two Years On – Two Years of Trying.

If you’d like to keep up with my blog posts then click follow at the top or bottom of the page to receive an email each time I post. You can also follow this blog on Facebook here, or my Colouring blog on Facebook here. If you’d like to read more about how I got into blogging, what I’ve learned and how it’s helped me, you can read my post here. If you’d like to read more about my experience with mental health problems and my thoughts and feelings on the matter, all of my posts are arranged into date order here.

Relieved …. I Think!

Today I’m relieved … I think. To be honest, I’m actually numb, but I should be relieved and I think I will be when everything sinks in. I’m truly exhausted after under 6 hours’ sleep a night for the last week due to anxiety about today and only getting 3.5 hours last night and then being done in with drilling and hammering in our stairwell almost all day. To my friends and family who I haven’t told/reminded that I had a psychiatrist appointment today, I’m sorry, I only reminded my boyfriend, it’s nothing personal, I also didn’t phone any of you and I’m sorry about that too, I’m just burnt out and couldn’t deal with phoning anyone or answering questions, or anything really.

I didn’t attend my appointment today. I’ve been asking them since July to stop making me attend appointments that have been making me so unwell, I’ve written letters, had my Support Worker tell them, told them in appointments and until now, they’ve not got the message and keep telling me I have to attend one more to discuss it. I’m not allowed phone appointments, they don’t offer the treatment I’ve been requesting (previous posts explain this in detail but long story short I was lied to about it being offered, then categorically told it wasn’t, and then finally found out it is offered but not in our area and I can’t travel so it’s not currently suitable) which ironically I’m now way too ill to even contemplate, and the only treatment option they offered was going to groups, not group therapy, just groups of other mentally ill people talking about coping strategies we each have and doing arts and crafts – clearly ideal for a virtually housebound agoraphobic who suffers from panic, severe social anxiety and Generalised Anxiety Disorder. I digress…. essentially they’ve continually offered the same unsuitable treatment for 18 months that I cannot attend, I’ve been practically pleading with them to stop making me go to appointments and threatening me with discharge if I can’t attend 3 (I’ve now missed 4 and postponed 3 – I’ve always given as much notice as I can, I’ve never just not turned up) back to a GP who told me to “try harder” on the meds she incorrectly put me on.

Today was a meeting between my psychiatrist, my Support Worker and the therapist I’m yet to be assessed by because I was too ill to attend the appointment in December or January. I was invited too but since deteriorating in October, after the last appointment with them, I’ve only been able to go out on a handful of occasions to places that I’m very familiar with so there was no way I could attend. I was fully expecting to be discharged today after being told so many times that I would be but I finally got some good news. They’re actually doing what I’ve asked and allowing me to be in charge of the care I receive and they’re going to leave me alone until I’m well enough to engage with the services they can offer. I’m still waiting for confirmation of this by letter so I’m not getting my hopes up too high until I have it in writing and have all of the ins and outs explained but it looks like I’m going to still be part of their patient list and everything they’ve offered is on the table for me to reinitiate when I’m well enough and I can contact them to do this when I’m ready. This will hopefully mean no more dates, no more appointments, no more pressure or stress from them to be well enough to attend and then not believed about how ill I am, and I can finally get back to focusing on what I’ve been meant to be focusing on – getting better.

Dates are horrid for me (more on this later in the week) because I can’t forget them because I have such a good memory so even when appointment dates are two months in advance like this one was, I still worry about it and obsess over it for that whole period of time. I’m also asked each time how I’m doing since last time and have to try and keep a mental diary of what I can and can’t do, in comparison to various different dates and periods of time to be able to relay back at any given moment. This is soul-destroying for someone who’s so achievement focused. I try so hard every day to do something useful, to achieve something, to improve, to get better, and the constant reminder that I’m essentially failing has been one of the things that I feel has kept me worse and definitely the thing that triggered my deterioration almost 6 months ago. I’m not getting my hopes up that this decision will suddenly cause some miraculous spontaneous recovery, but I am hopeful that without time pressures from doctors who barely know me, and left to finally listen to my own body and mind and do what I think is right instead of constantly being told that’s wrong, will at least give me the best chance of getting better.

I can’t think of anything else to say, I hope I’ve explained everything clearly and updated all those of you who wanted to know what’s going on and especially those of you who I should have phoned – sorry for the lack of contact. I’m spending the rest of my evening colouring, watching easy tv and hoping to maybe actually sleep through the night tonight, I’m exhausted and desperately need some sleep soon because I’ve been a shaking, nervous-wreck this past week. I’m not relieved yet, but I will be, I hope!

The Truth, the Whole Truth and Nothing But the Truth

This is an update on where I’m at, where I’ve been and where I hope I’m headed and an apology for the lack of mental health posts. Firstly, I’m sorry for the lack of posts about mental health. It’s not deliberate and it’s not what I’ve wanted but I’ve just not had anything to say on the topic. When you eat, sleep and breathe a subject, as well as suffering from it, you become pretty overwhelmed and saturated by it and while I’m hugely passionate about it still and am desperate to do anything in my power to reduce stigma and increase understanding, I’m having to learn to not do that at the cost of my own health and to stop before I burn out. I keep thinking up posts to write and getting half way through writing them and then struggling to find the words or be able to focus long enough to make it coherent enough for someone else to read. I’m also struggling because much as I’m a very open person and I pride myself on being honest, that’s not always total. I will never lie, I will never make anything up but sometimes I go quiet so that I don’t have to tell the whole truth. I find it very hard to let people in to the very depths of my thoughts and feelings and most of the time I don’t even let myself go there for fear of getting stuck or lost and not finding a way of returning and regaining control. But this means that I feel I’ve lost my way a bit with my blog. I set it up to tell you all the truth about mental illness. And not just the truth I wanted you to hear or the bits I wanted to vent about or challenge or address. My aim was to tell the whole truth. To tell you all the good bits, the bad bits, the achievements and the deteriorations, the ugly days, the real, hard, gritty bits that almost no one ever tells anyone because it’s just too embarrassing or difficult or upsetting. My aim was always to blog about those things so that you could see inside my world, see that depression isn’t always controllable and also isn’t always crying in bed all day; to see that anxiety controls every fibre of your being but that some days you manage to tame it and overcome it and do something you never thought possible and then the next day return to not functioning again.

I haven’t felt able to be totally honest recently because to me, I’ve failed. I deteriorated a couple of months ago thanks, largely, to the extreme pressure I’ve been put under by my psychiatrist to attend treatment that I cannot possibly attend. I’ve been hoping and pushing and trying to work towards it, all the while fighting and ignoring the anxiety that has now taken over completely that was telling me it was too threatening to do. Consequently, most of the progress I had made over the previous months has been lost. It’s not lost forever, I know that, but at the moment it’s out of my reach and back to being incomprehensible and inconceivable again. This has been utterly soul-destroying for me. I’m a very vocal person and I’ve talked to the people around me and my blog readers about every step of this journey through the world of anxiety and mental health treatment but the last few months I’ve got quieter and quieter about it because I simply don’t know what to say. So I’m here, being as open and honest as I can cope with to try and restore order and balance and to get back to doing what I feel I should be doing and want to be doing on my blog. I’ve written about what my conditions are like to live with, I’ve described my diagnoses, disappointment after disappointment with treatment (or lack thereof) and have previously been very honest about my levels of functioning. I kept pretty quiet about most of my achievements and I hope you’ll all forgive this. I wasn’t trying to pretend I was worse than I was, I’ve never ever lied, I simply didn’t want people using the dreaded “I” word (improvement) prematurely, and then being ‘disappointed’ if I was no longer able to do those things. I have achieved things over the past year and was going outside more often, though without any regularity, and was struggling a little less with it. I was managing to do more things on medication and pushed myself really hard to do a few things that I was desperate to do but none of these things were able to be repeated again. Each time I do something and then can’t again it feels a little bit like I’ve failed. I’m my own worst critic, I know, but I try not to get others’ hopes up prematurely because when I’ve done that in the past I’ve been berated for not trying hard enough or choosing to stay ill if I then can’t do those things again. I now describe good things as achievements rather than improvements because doing something on one day doesn’t mean I can do it again, as I keep realising throughout this period of illness. I was managing to go out more often and more easily and I was definitely making progress and heading in the right direction and now, since October, I’ve deteriorated in my ability to go outside and have only left my flat once alone in over 2 months.

So why haven’t I told you this on the blog? Why hasn’t there been a post about my deterioration, my frustration, my lack of functioning? Here I go with the honesty again – because I’m embarrassed. I didn’t want to have to face the fact that I’d deteriorated, I kept ignoring it and hoping I’d be able to go out alone tomorrow, but tomorrow hasn’t come. I kept thinking that if I just tried harder, it would happen. Ridiculous I know! I, of all people, should know by now that trying hard is not the route out of mental illness, that you can’t just will it away or hope your way out of it and yet that’s what I’ve been trying, very unsuccessfully, to do for the last 2 months. I didn’t want people to be disappointed in me for letting my functioning slide, even though it’s not in my control and hasn’t been a choice and that it slipped overnight thanks to the appointment where I was put under so much pressure. I thought people would be annoyed, or judgemental or unsympathetic because that’s the experience I’ve had in the past when I’ve been in similar circumstances and so I’ve kept quiet and not really told anyone. I’ve tried to deal with it alone and not mention how much I’m struggling and how I feel unable to do almost anything on my own. I’m still fighting, I still keep pushing through and try to ignore how insecure I feel and how incompetent I believe I am at even the simplest of tasks but it’s all there if you just scratch beneath the surface. Yesterday, for example, I made biscuits with my boyfriend and even that was difficult for me. They only contain 5 ingredients and are beyond basic to make but I still had to check every step with him, double check the measurements every time and get his advice on when they looked ready to come out of the oven. I can’t bake on my own because I get so anxious and any little problems turn into catastrophic failures in my head so I have to be babysat for tasks like this. It’s so embarrassing to me – I have a degree, I lived away from home and looked after myself for 3 years and now I’m totally reliant on the people around me to help me with basic tasks because they’re so overwhelming. In terms of going out, there’s very little to speak of. I’m still pushing myself to go to my grandparents’ and my dad’s whenever I can but these visits are more anxiety-provoking again which is so upsetting because I’d really combatted that since the summer. As for going out alone – I can’t. I try, every day but I end up physically rooted to the spot and can’t even open my front door because I’m so paralysed by fear. I do occasionally go out with someone but even that is now back to being very challenging and infrequent. It’s such a huge step backwards and I’m back to feeling imprisoned. Part of why I’ve not written about it is because I try to keep myself busy all day, every day in order to ignore how trapped I feel and how upset I am about this deterioration. I try to keep pushing through, to do at least something useful with my time and to achieve something, no matter how small. But I do feel crushed inside, so disappointed and I try to drown out the failing feeling as much as I possibly can.

So, that’s where I’m at and where I’ve been recently, with as much openness and honesty as I can cope with. As it’s New Year’s Eve and the socially acceptable (practically enforced) time of the year to look forward and prophesise about where we’ll be in future years, I’ll simply say this – I’m working my socks off, every day, to fight this condition, to one day be able to beat it. There are good days and bad days and better periods and worse periods and I’m currently struggling to see how I can get back to the level of functioning I was at 3 months ago, let alone the level of functioning I was at before being struck down by these hideous conditions. But, rest assured, I’ve done it before, and despite not having a clue how to right now and being scared senseless, I WILL do it again! I didn’t want to admit to deteriorating because I like to come across as strong. I’m regularly told I’m strong and I try to be that, to stay strong despite going through adversity, being dealt a shitty hand (sorry Nana), and not being where I want to be in life currently, but I feel weak and defeated currently and that’s the one thing that I don’t let people see or hear, but it’s the one thing that also stops me asking for help, that stops me from expressing stuff and that stops me from showing how scared I am that this will beat me. People around me seem to ‘know’ that I’ll be ok, that I’m strong enough to fight this and logically, I can see that and I know it too but deep down I don’t feel it. Deep down I’m terrified that that’s just a ridiculous, naïve hope and that this is as good as it’ll get for me. I refuse to accept that and I refuse to give up but sometimes those thoughts and worries take over and my strength gets up and leaves. That’s happened for the last 2 months and it’s why I’ve not told you all because I felt weak and admitting that felt like admitting my conditions have won.

So, there you go: mental illness – warts and all. This is an ugly post about the hideous depths mental illness takes you to, the warped thought processes it creates and the shame that often ensues. But I’m hoping it’s also got me back on track to be more open, be more honest and to really, truly tell you all The Truth, The WHOLE Truth and Nothing But The Truth about my life with mental illness. Happy New Year to all of you and thank you so much to each and every one of you for your continued support, for reading, sharing, commenting, emailing, anything you’ve done to interact with me and my blog. Having this outlet has made me feel so much less alone and has given me a platform to be able to help people which is my sole aim and purpose in life. Thank you all and see you in 2016, let’s hope there will be more posts about achievements and eventually even a post with the currently banned “I” word in the title but in the meantime I hope you’ll continue with me on my journey, the good bits, the bad bits, the ugly bits and eventually, I hope, the improvement!

Dignity and Respect – Being Treated Like a Human Being (World Mental Health Day)

October the 10th was World Mental Health Day and this year’s theme was dignity. I originally thought this didn’t apply to my situation because I am, mostly, dignified whilst being ill and treated with dignity, or so I thought. I started this post by looking up the definition which I found to be as follows:
Dignity – The state or quality of being worthy of honour or respect.
As soon as I read that, I realised that I was wrong – while I may behave in a dignified manner, I’ve certainly not always been treated in a dignified way and have often not felt worthy of honour or respect because of the way I’ve been behaved towards.

Dignity is something that is often overlooked when treating people with mental health problems and we are often not given the respect we deserve. Sadly, this behaviour is often directed towards us by the very people who we have sought help from, who are trained to deal with our conditions and who we are reliant upon to offer or refer us for treatment. Is it any wonder then that it takes most people such a long time to even go to their GP when they suspect they may be mentally ill? Stigma is still rife within our society and while it is improving and openly stigmatic behaviour is starting to reduce, there is still a really long way to go and unfortunately, nowhere is this more necessary than within the medical community.

My experience of seeking treatment has been very varied and it’s often a very lengthy process. Even when I’ve gone to my GP about physical problems, I’m often disbelieved or it’s assumed that my symptoms are psychosomatic or even made up – all because I have a mental illness. I’m regularly talked down to, patronised and treated with condescension and this has very much put me off doctors and seeking help unless I really have to because I simply don’t have the energy to fight for someone, who should be understanding and sympathetic, to even believe me. Couple with this, the responses I’ve had from doctors when attempting to get a diagnosis or treatment for my mental illnesses and we’ve got one hell of a problem.

A month before I turned 16, circumstances in my life led to me feeling incredibly sad and low and unable to cope anymore, pretty much over night. Mental illness was not something that had featured in my life up until that point – none of my relatives or friends were ill to my knowledge and my only experience was that of over-hyped and dramatized portrayals in the media of violent offenders and people muttering to themselves and rocking whilst strapped into straight-jackets in padded cells. So when I started feeling low and it didn’t go away, I didn’t know what to do. I thought people would think I was silly and that I should just be able to cheer myself up because nothing terrible had happened, no one had died, I hadn’t been attacked, things were just going wrong at home. Eventually, after 2 months of never feeling better, I finally plucked up the courage to go to the doctors. I thought I was going to get sectioned or medicated but I didn’t know what else to do and the thoughts I was having were starting to scare me. I explained to my GP what was wrong and that this wasn’t normal for me. After 10 minutes she told me that it was “January Blues” and “every teenager in the country is feeling like this at the moment”. I said to her at the time that there would be a lot of suicides if that were the case but I was sent home and she did nothing. Two months later I went back, I’d started self-harming and was feeling suicidal every day, she took one look at me and referred me to the Child and Adolescent Mental Health Service because I was very ill and needed help. The first doctor I met there was great, he treated me like a person and was very respectful and understanding about how bad I was feeling and that something needed to be done about it. I wasn’t so lucky with any of the other staff I met there. I was allocated a nurse who I saw once a week who spoke to me like a child and contradicted me every time I said I was feeling worse. I was put on medication more than once and never monitored properly and then told off and admonished when I took myself off it because it was making me suicidal and I felt unsafe. I felt like a naughty child, not a 16-year-old who clearly knew their own mind and felt in danger.

Fast forward to 18 months ago and dignity was thrown out the window by my new GP who decided that telling me to “try harder” whilst dealing with crippling side effects from medications that were later described by a psychiatrist as “virtually poisoning you”, was the best way forward. I practically had to beg her to even refer me to a psychiatrist despite having a history of medication-resistant depression because she felt that I didn’t need one and she was doing a “perfectly good job of treating me herself”. Eventually she conceded and I was able to see a psychiatrist. This has been a good and bad experience. I’ve been lied to, fobbed off, ignored, disbelieved and dismissed. At points I’ve been spoken to like the knowledgeable, well-educated adult that I am who is well aware of the limitations of the NHS and who has studied, worked in and experienced as a patient, the mental health services in this country. But that has been rare. Instead of treating me with dignity and respect, most decisions about my treatment are made without me, often without my knowledge and my very character is often questioned when it’s assumed that my conditions simply can’t be as bad as I’m describing. I highly doubt cancer patients are treated like this when vomiting because of chemo or dealing with hair loss – are they told by doctors to just “try harder” or “stop focusing on the negative thoughts”? I think not! So why am I? Why am I dismissed and treated with so little respect?

It’s clear that many doctors have never been mentally ill, and they’re very lucky. But for those of us that are, it’s hard enough trying to deal with the conditions we have and the things that go hand-in-hand with that like low self-esteem and self-worth without having to deal with doctors judging us, accusing us of faking it, exaggerating, or causing it ourselves. It’s so hard to pluck up the courage to even go to the GP and admit that there’s a problem that you can no longer cope with or hide, without fearing how they might react to you. In an ideal world, we would all be treated as human beings, with dignity and respect, regardless of what symptoms or conditions we have. But currently, this isn’t the case. Something has got to change. Medical professionals, especially those that don’t work in frontline mental health services, are vastly ill-equipped and under-trained to deal with mental illness and instead of seeing people like me as people who are ill, they just seem to see us as walking labels. They still seem to have hugely stigmatic beliefs about us being in control of our conditions and able to just “snap out of it” or “pull ourselves together” and we’re treated accordingly, with disdain, coldness and even aggression sometimes.

First and foremost I’m a human being. After that, I’m many many things – I’m Lucy, I’m female, I’m 24 years old, I’m kind and caring, I’m creative, I’m a great friend. I’m also mentally ill but I’m not those conditions. I’m not anxiety, I’m not depression – I have those, but I’m not them. I am a human being and that entitles me to be treated with dignity and respect, regardless of what conditions I might have. The sooner I’m viewed as a person rather than a list of symptoms, the sooner I’ll be viewed as someone who is suffering and should be treated with dignity rather than a problem that needs to fixed or made to “see sense”. I might be mentally ill but I’m not mad, I don’t lie, I don’t make things up, I’m completely rational. If I say I’m ill, if I say I’m suffering then I’m not trying to gain another label or diagnosis for fun – I don’t get points for it, they certainly don’t convert to prizes. The only reason I seek diagnosis is in the vain hope that it might lead to treatment. Being spoken to in such a dismissive way has stopped me seeking help for most of my conditions and has had a major impact on my self-esteem because it makes me feel less of a person to have a doctor questioning me and treating me with so little respect.

Finally, while I’ve focused on the medical profession within this post, they are certainly not the only people that have not treated me with the dignity and respect I deserve. As you’ll have read in previous blog posts, I’ve been treated disrespectfully by a whole host of people throughout my time as an ill person and this has got to change. You can be that change. Next time you’re talking to someone who’s mentally ill, really listen to what they’re saying, don’t try to fix it, dismiss it, or make them see the positive – just listen. Then think about how you would want someone to respond if you’d just said all of that and were feeling that way. Chances are, you’d just want to be acknowledged, to be accepted and to feel heard. Most of all, you’d want to be treated with Dignity and Respect – you’d want to be Treated Like a Human Being. Be that change today!

N.B – A huge thanks goes to Steve “Squidoodle” Turner for his amazing Breast Cancer Awareness Ribbon Colouring Page which I coloured in green for Mental Health Awareness. If you’d like to get a copy to colour yourself, he’s generously offered it as a free download on his Facebook Page which can be found here. Enjoy and help raise awareness!

Crisis – Drowning and Trying Not to Sink Any Lower

Trigger Warning: This is not a cheery post and talks about feelings of hopelessness and worthlessness. Please don’t read on if you feel that this may upset you or cause you any form of mental distress. This blog is here to raise awareness, improve understanding and communicate difficult themes of mental illness that I experience, it is not here to cause any distress so please read with caution and look after yourself!

Crises are things that many of us go through at some point in our lives. Whether it be a mid-life crisis, a confidence crisis, a devastating loss, a sudden change in circumstance, they can all be crises to us that threaten to overwhelm, take control and force us to submit to the idea that we cannot and will not cope with whatever it is that we’ve just been dealt. I am very much going through this right now.

Despite being virtually housebound for 16 long months, I have mostly been able to keep plodding on, to keep my head just above water and to keep hoping and believing that I can and will get through this and get better. Sadly, this is a very fragile state for me and involves a lot of hard work and effort to keep the negative thoughts at bay and to keep moving forwards as best I can. I have to work at it every single day otherwise the drowning feeling quickly seeps in and takes over and I have to fish myself out again, always a little more damaged by the darkness that’s snuck into my head. Each time it gets a little harder for me to find the light, to find hope again, to believe that this may be temporary and I may be lucky enough to get my life back again.

So what sparked this crisis off? I’ve been waiting for the last month to hear from the support worker I’m supposed to have been allocated after my last psychiatrist appointment where I was finally diagnosed. I have been incredibly anxious about this phonecall and every time my phone has rung my heart has skipped a beat and my breath has caught in my chest while I check the caller ID and see if it could be them. But I haven’t heard anything. I’ve been feeling increasingly apprehensive about whether I’ll like the person, whether we’ll get on, whether the treatment will be set at my pace or whether I’ll be forced to do things I feel unable to do and pushed too hard or not be believed if I say that I cannot do what they’re requesting. I’ve worried about whether it will make me worse by pushing me too far too fast, whether it will indeed help and if it doesn’t, what, if anything, might help instead. All of these thoughts have been racing through my head every day for the last month and it’s exhausting. My head feels full, like it’s wedged full with cotton wool which makes concentrating on even the most basic of tasks increasingly difficult. It’s why my reviews are so sporadic, because some days I’m completely unable to get ideas down on paper or even pick a colour or a page to colour. Other reviewers complete around 5 reviews a week, I’m lucky if I manage half that despite not working, not having children and being a total disaster of a housewife because I find the task monumental and every single step takes longer than it should or would if I were well. I try to ignore this and just keep plodding on at my own pace but it’s hard not to compare myself to others and wonder how I’ll ever cope with a real job again if I’m struggling so much with doing this. Don’t get me wrong, I love reviewing and I’m unbelievably grateful that I’m being given the opportunity to write them for publishers who kindly donate copies of their books, but I find it very hard to keep on top of it and to not get overwhelmed. But, I refuse to give up – I refuse to surrender another part of my life to my condition. I have to challenge myself, to keep pushing my boundaries and to keep standing up to the anxiety or it will take over every part of my life and my personality. So I keep going, I keep fighting the demons, I keep telling myself that I can do it, that I am achieving something, that I am, in a small way, helping others with my reviews and that I’m not totally useless like I regularly slip into thinking.

Anyway, on top of all of these daily thoughts and worries about the support worker which are already added to my general every day worries and anxieties, I received a letter on Friday which was what triggered this crisis. I’ve been asked to attend yet another assessment, with another member of staff I’ve never met (this time a nurse) at a day centre I’ve not attended since I was 18. I don’t know what this assessment is for, or why I’ve been asked to attend. I’ve been sent a standardised letter which totally panicked me because the wording states that they’re assessing me “to determine the best course of treatment for you at this time” and that it will last an hour to “enable you to discuss your current difficulties and whether we can help you at this time”. I’ve already been given a treatment plan and was under the impression that the next step was a support worker being allocated to me and contacting me to arrange a home visit. None of this has happened and I have no idea what this assessment is for. I’ve phoned this week to ask my psychiatrist what’s going on and what it’s for but I’m yet to receive a response so I’ve now spent 6 days (and counting) feeling incredibly anxious to the point where my insomnia has worsened and I’m now unable to sleep before 4am instead of my usual 2am and yesterday I didn’t sleep until almost 5.30am. This then means that I’m even less able to deal with the anxiety and I’ve already had at least 4 panic attacks this week because of it.

Not only has my anxiety worsened significantly, I’m now able to do even less than I usually can because my baseline anxiety level is so high that it takes very little to push me into levels where I can’t control it or cope and have a panic attack so I’m now leaving the flat even less than usual and I’m now even more trapped in my own home and my own head. This has really scared me because normally a letter would shake me up for that day, maybe the next as well but I’m now at nearly a week later and I’m still not calming down. It’s got me questioning major parts of my life (hence the crisis) and I’m now wondering if I’ll ever get better, what might help, will anything help, what do I do if I stay at this level of functioning for a number of years without improvement? I have goals and dreams and plans for my life. None of these are especially big or outlandish. I don’t want to travel the world, if I can never go on an aeroplane again then so be it. I don’t want to bungee jump, skydive or put on a concert for 1000s of people. All I want is to be able to leave the house when I want to. I want to be able to work. To socialise. To get married. Most of all? I want to stop feeling scared. I’m fearful of so many things, it has taken over my whole life and I now overthink everything. I want to be able to get dressed and not worry about what people will think of what I’m wearing. I want to be able to work without the fear that I will fail or let people down. I want to be able to say no to people without the fear that I will be rejected and end up alone. I want to feel confident in my own skin, to feel safe, and to know that the choices I make are ok and accepted and that I don’t need to worry all the time. I want to stop feeling afraid.

This week has caused me to feel totally lost. I feel like I’ve barely made any progress since getting ill 16 months ago. I try my hardest every day and I challenge myself regularly. I’ll achieve something one day and then not be able to do that thing again for another month or even 6. At this rate of progress I still won’t be able to work in a decade and that’s hard to stomach when you’re only 24 and you have your whole life ahead of you. I want to be able to fulfil my modest dreams, to achieve the things I hope for. I want to know that somehow, someday, I will get better. That I will get my life back and grab it with both hands so that I can change the lives of others with conditions like mine. I’m desperate to make a difference, a bigger difference than I can possibly make sat behind a computer screen and trapped inside my flat. I have no idea how to get better, or what will work. I was so convinced that medication would work and I’d be back at work within 2 weeks. I thought I’d be able to drag myself away from the irrational fears and force myself into no longer being scared but that has not been the case. I’m rapidly losing hope and I feel like I’m pretty much out of options. I’m not religious, I don’t have faith, I don’t have the comfort of believing in a higher being that has a plan for me that I just have to wait out until it improves. I don’t have anything to rely on or to comfort me in these dark hours to prove that I will get better and that it’s just a matter of time. So I have to keep working, all day, every day, on trying to keep my head above water and when I can’t do that, like I can’t currently, I have to just try to prevent myself from drowning and falling further down under the water. My hope is that this anxiety will calm down again over the next few days and I’ll be able to build myself back up with the help of those closest to me who I know still believe in my ability to improve and get myself better. One thing I have in spades is determination so if anyone can do it, then I can, but right now that feels so untrue and so impossible because I can no longer think of a solution or method to improve and without that it feels like all hope is gone because I have nothing left to hope with. I have heaps to hope for but that just feels like torture, like showing a hungry child photo upon photo of plates of delicious food without giving them any way of having it. The hunger is easier to deal with and ignore if you don’t think about the thing that you want most – food. So I’m trying to ignore all of the things I’m missing out on, the things I’m desperate to do, the simple things that everyone around me takes for granted but that would make my day if I could just do them without fear anymore. I’ll keep on colouring and reviewing and keeping myself busy in the hope that it will keep my mind occupied at least some of the time and keep me distracted from the constant stream of “what if?” and “how the hell?” questions running through my head. Hopefully this crisis will pass as quickly as it’s hit me but for the moment I’m drowning and trying desperately not to sink any lower.

You Wait 15 months for One Diagnosis and then Three and a Half Come Along at Once.

Yesterday, my boyfriend and I went to see my new psychiatrist after not being seen by one since September because mine left and I never got put onto anyone else’s books. We were told we were attending to finally discuss diagnosis and I went hoping that would happen and I’d finally get a straight answer about treatment. Luckily, this psychiatrist is very thorough and seems to actually care. I met him once when I was 18 and liked him then as he was honest enough to tell me that because I’ve tried the main effective medications for my conditions with very negative effects to my health, I have medication-resistant depression and there was little to no point in trying those types of meds again in the future (sadly this information didn’t get back to my GP so when I originally became anxious I had to try taking these types of meds again before she’d try me on any new groups). The appointment was incredibly challenging. As usual, we were seen late and it turned out that slot had been triple-booked (I despair at the organisational skills of these places sometimes). I spent the entire assessment on the edge of a panic attack and cried twice because it was so overwhelming despite having taken diazepam in order to even get out of my flat to attend. I managed to get my points across though and have a tentative set of diagnoses that will be confirmed by letter within a fortnight. As a psychology graduate, I already had a fair idea that I’d be diagnosed with Generalised Anxiety Disorder as I fit all of the diagnostic criteria and have just about every symptom listed in the DSM (Diagnostic and Statistical Manual – used for diagnosing psychiatric conditions). What I wasn’t expecting was to be diagnosed with Social Anxiety and Panic as well. I always thought Social Anxiety was extreme shyness and an inability to be around people or to socialise. It turns out, it’s not that simple and that actually I fit very neatly into that box thanks to my fear of judgement from others and excessive worry about failing to meet others’ expectations or letting them down in some way (more posts in the future about this I’m sure).

I also got a big shock when personality disorders were mentioned. I have, at times, wondered if I had a personality disorder because many people with as many stress-related conditions as I’m racking up do have one. I’ve looked at the diagnostic criteria and got friends from my degree course to look as well and none of us think I fit the criteria so I really started to panic when the psychiatrist started to mention it because sadly, a diagnosis of a personality disorder leads to a great deal of stigmatisation, particularly within the medical community. Having worked with 10’s if not 100’s of patients with them, I’ve heard countless stories from them saying their doctors simply don’t believe them when they state that their conditions have worsened, they put all symptoms down to the personality disorder instead of looking at whether they have a second, third, or fourth diagnosis that needs to be made and they’re often labelled as manipulative hypochondriacs. Luckily, my psychiatrist agreed that these diagnoses of personality disorders are often very unhelpful and that in my case this would be true and I don’t fit into the criteria to be diagnosed with one because essentially I’m not severe enough. I was very relieved about this. He said, instead, that I can be described as having Adult Sequelae (seemingly not a diagnosis but a description hence the half in the title of this post). I’ve never heard of this at work or at Uni and when googling it, there is very little information, particularly for lay-people, just journal articles investigating links into drug addiction and alcohol abuse. However, how the psychiatrist explained it and what I’ve gleaned from the few studies that described it, is that issues from a difficult childhood or a pre-existing condition cause a second (or more) condition to develop as a result of the first. Because I had issues growing up, my ability to deal with stress has not developed and has left me very vulnerable to any future stress or adversity. I then develop physical or psychological conditions because of this lack of ability to cope and when I then learn to manage each condition but still not the underlying stress, I then develop a new symptom or condition each time I’m under severe stress or pressure again. It’s essentially like turning on a garden hose that has a hole in it. The water is the stress and the hole is a symptom/condition. I keep patching up the holes but then the hose bursts somewhere else (a new symptom/condition). I never manage to learn to turn off the water or re-route it somewhere else so I spend my life patching up the holes and learning to manage new symptoms and conditions without ever learning how to deal with stress or the issues from my childhood. This isn’t as severe as a personality disorder because seemingly, all of the other aspects of my personality are fully developed but my ability to deal with the negative events of my childhood and negative events that happen in my life today is still not formed. The psychiatrist has explained that I need to deal with the current issues of the anxiety disorders so I can get back to functioning and then work on learning how to deal with stress generally and combat the problems I’ve had since childhood. This means I’m going to be having a lot more therapy over the next few years and he did point out that while there is no reason to suggest I won’t improve, recovery is a much harder battle and one I’ve not yet won with any of my conditions as all those I’ve been diagnosed with still affect me to varying degrees despite my management of them.

Leading on from all of that, I’ve also finally had my treatment plan outlined! I’m to be allocated a support worker who will visit me at home and work on practical things to get me going out more. If/when that improves I will then be enrolled onto a group CBT programme at the local day hospital which I will attend with the support worker. After that, I may well be enrolled to attend the local recovery college where I will be taught about the conditions I have, how they work and what can be done to manage them. I’m not sure how much use that part will be given that I already have a psychology degree where I extensively studied these conditions and have not only worked for a total of 11 months with patients with these conditions but have also heavily researched them since becoming unwell myself but if I get well enough to attend then I’m certainly willing to give it a go to see what it’s all about and whether there’s anything new and useful I can pick up. After all of that, my level of functioning is meant to be a lot higher and I will then be assessed by a psychotherapist who will advise me about what long-term therapy I need to have and I’ll hopefully be referred to a highly skilled therapist from there for treatment which is likely to need to last 12-18 months.

So, I now have three and a half shiny new diagnoses and I’m still in shock about it all. I was so worried that I was going to be fobbed off again without knowing what’s wrong with me and what’s caused my life to turn upside down for the last 15 months. I’m pleased I now know officially what’s wrong with me, that I’m being offered treatment and now have a plan of what’s going to be offered and what we’re trying to tackle first, but naturally, now the worry is setting in about the pressure I’m likely to be under to improve, to constantly be getting better without being able to get used to any slight increases in functioning (there will be a lot of these in between being virtually housebound now and having a normal life where I can work and socialise). I’m worried about how I’m going to cope with a support worker when that’s the job role I was in when I became too ill to work, whether I’m going to get on with them, whether my treatment will be done at my pace or a pace set for me that I don’t get to have input into and a whole heap of other worries. The nature of Generalised Anxiety Disorder is that you worry about everything, particularly the unknown, so this is all very scary. I now have some labels that roughly describe what’s wrong with me and what I’m going through but I currently have no idea how long it may take to improve my functioning or even if the treatment plan will help. It sounds like the psychiatrist expects it to help but then he kept saying “if” so I don’t actually know what the likelihood is or what time-scale we’re looking at. I’m trying to just stay calm and take each step as it comes but such is the nature of the beast that I’m fighting that this is nigh on impossible for me to do and I’m already worrying about what if all of that doesn’t work and I’m left housebound still with another treatment option crossed off the list as not having worked. I’ll certainly be giving it my best shot and anyone that knows me offline will know how motivated and determined I am when I set my mind to something but the worries are still ever present. At least I know what conditions it is I’m fighting and have an action plan to try. Beyond that I’m just having to hope, and wait and see! Updates will follow as and when there are any. I’m still shocked and stunned that I’ve waited 15 months for one diagnosis and then three and a half came all at once.

Now You See ME

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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