NHS

One Year On – One Year of Fear

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

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

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

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

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

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

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

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

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

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

Taking 5 minutes to talk to BBC Radio Sussex

My Radio Interview – 52 mins in.

Today was Time To Talk Day run by the charity Time To Change. I spent the day talking to people online, posting statuses on Facebook about mental illness and how to start up conversations about it, and speaking live on air to my local radio station. The link above is to my radio interview on BBC Radio Sussex and my section can be found 52 minutes in. I really had to challenge my anxiety to speak on the radio but it was something that I really wanted to do because I feel very strongly about speaking out about mental illness so that we can stop the stigma that surrounds it. It all went by in a bit of a blur but if it reaches one person and changes their mind about mental illness or encourages someone to talk about their experiences then it was totally worth it. I’ll be back to writing regular posts soon but just wanted to share this interview with you for the time being. If you haven’t already, please take 5 minutes to talk about mental illness, it’s so important and means people like me know that we have support around us.

Medication Withdrawal

For a few months I’ve been considering coming off my medication (Pregabalin) because I’m experiencing so many side effects and few, if any, positive effects. I’ve given it a good go having been on it since the 21st of June. I’ve increased to a level where I should definitely be feeling calmer and less anxious but I’m not and instead I’m experiencing a heap of physical side effects including, but not exhaustively: dizziness, sedation, nausea, agitation, inability to get to sleep, inability to stay asleep, visual hallucinations, slurring, poor concentration, poor memory, tiredness, disturbed vision, disorientation, weight gain, feeling drunk, increased appetite, anxiety and low mood.

After speaking to a pharmacist friend, my mum, boyfriend, and two best friends, I decided to come off the Pregabalin. Normally I would do this under the care and supervision of a doctor but this is not currently possible because: 1. My GP barely knows me and refused to put me on Pregabalin when I requested it; 2. I’ve not been seen by a psychiatrist since the 3rd of September and haven’t had any contact with him since the 29th of October; and 3. My psychiatrist has now left and I’m still yet to be allocated a new one. Consequently, I’m doctor-free and feel like I need to take matters into my own hands.

So, that brings us up to the 28th of December when I decided enough was enough and I needed to bite the bullet and start reducing. I was on 225mg a day and I will reduce by 25mg per week as long as I don’t feel too horrendous. Today is day 10 and as of Sunday (4th) I’m down to 175mg a day. I don’t feel horrendous but I’m certainly not feeling well. I feel sick for hours after my evening meal and am often close to vomiting, I’ve got terrible tummy ache and have had a constant headache for 5 days. I feel dizzy and am suffering from visual hallucinations in the form of objects moving and seeing insects/spiders running across the floor in my peripheral vision. I’m also now feeling more anxious, paranoid and on edge, particularly at night, which is preventing me from sleeping and when I do sleep I’m having weird dreams and nightmares. I get feverish throughout the day and often feel boiling or freezing or each half of my body will be doing different things. It’s not a lot of fun.

On top of all of that, I’m trying to keep myself busy and occupied but it’s proving increasingly challenging because my concentration and memory are really poor and I often struggle to plan or make decisions. Today was a good day and I was able to go to my grandparents’ and help them with some things. I really enjoyed it and was amazed at how well I coped with it all when yesterday I had to have help ordering a Tesco food delivery because I couldn’t work out what food we needed or concentrate for long enough to do the order on my own (I’ve since updated it at least 6 times with things I’d previously forgotten to order). I find it really hard to be this useless and unable to do so many tasks that I would have found so easy when well. I used to do all of our food shopping and meal planning and we never ran out of anything because I would always stock up. Now I need help with all of that and my boyfriend has to help me plan meals and write down what I’ll eat and remind me to defrost stuff because I just forget or can’t work out what to make. I’m not like this every day but I’m affected like this more than 50% of the time and it’s not the withdrawal that’s causing it, it seems to be the anxiety disorder itself because I’ve been like this now for months. I need so much help from people, so much guidance, advice and support. I don’t feel like me, not the real me. I have to have help with planning things, prioritising, organising my day, starting tasks, continuing tasks, working out how to tidy things, even what to wear some days. All of these things that I can’t do or need help with just make me feel useless and worthless. I can’t work but I should at least be able to be one amazing housewife with a spotless flat and wonderful home-cooked meals. As it stands, I don’t even know where to start with cleaning and most days I simply don’t have the energy thanks to the medication and now the withdrawal.

People wonder why mentally ill people don’t like taking medication or come off it as soon as they’re well despite knowing it’s the medication that’s keeping them that way but it’s almost always because of the side effects. Most mood stabilisers cause weight gain which is no good for your self-esteem or your physical health. Many anti-psychotics cause slurring, dribbling, slowing of movement and thoughts and other very noticeable side effects. Anti-depressants often make you feel worse before they make you better and even increase suicidal thoughts and tendencies. Is it any wonder that we’re so resistant to taking medication when the drugs that are meant to make us better often leave us with debilitating side effects?! When I first started to feel anxious and realised that I wasn’t coping I went to my GP and begged for drugs because I had no idea how to stay calm. I went on medication 3 days after I first phoned in sick at work and have been on medication for the last 9.5 months for all but 10 days since then. All three medications have made me really really unwell and never touched my anxiety. By March I will be drug-free and attempting to overcome this anxiety disorder on my own and on my own terms without having to deal with medication side effects. However, I no longer have the hope to hold onto that there is a drug out there that will help me and increase my functioning.  My psychiatrist was very clear that this would be the last drug he’d put me on and that if this didn’t work then I’d have to be medication-free. That’s the biggest reason I’ve stayed on it for so long because I just kept hoping that one day I’d wake up and it would be making me calmer. That day hasn’t come. I already have physical health problems that mean I often don’t feel “well” each day but these drugs have made me feel terrible and so the only way forward is to come off them.  The withdrawal is likely to get worse as my body craves the substance more with each week that I’m reducing it but I’m determined to be off it so that I can just battle the anxiety disorder rather than the list of physical side effects on top of it. I’ll keep you all posted on how it goes but suffice to say that medication withdrawal is a bitch!

Dear Psychiatrist

I’ve adapted and added to this letter which I originally gave to my psychiatrist at the end of October. It’s now more up to date, strongly worded and passionate than the original and thus more in keeping with my thoughts and feelings about my treatment and care.

Dear Psychiatrist,

I would like to clarify a few things. I had marginally improved before our last appointment but not even enough to be able to leave my home more than once a week. I have not improved at all since then. At no point during this period of illness have I improved enough to even consider a month to go back to work let alone implying (as you stated in our last phone call) I’d thought of a start date to return to my position as a Healthcare Assistant on an acute psychiatric ward. When I recover enough to consider working, I will only do so part-time and I will be looking for less stressful positions in retail or offices until I get back to functioning fully. Given that it is still a major struggle for me to leave my home to attend appointments, I don’t think that returning to work will even be a consideration for a number of months.

In future, if I am deemed unsuitable for services that I have been told I will be referred to I would like to be informed of this immediately rather than waiting until the next appointment which could be some weeks or even months away. If treating me is an issue because I am an employee of the NHS Trust then I would like this to be discussed with me. I deserve to have all of the treatment options that any other patient would be offered and if these may cause problems for my future employment then I would like to discuss this rather than not even being informed and having critical decisions about my treatment made without me even knowing.

I would like to be treated with some urgency rather than taking little steps and seeing what happens. As you will have read in my notes and I have said in our appointments, medication does not work well for me. The Pregabalin is reducing some of the intense panic that I often experience and I feel calmer at home but I’m still not able to leave the flat when I would like and am feeling increasingly trapped by this. I am also suffering a huge number of side effects that do not wear off after each dose increase and this is also majorly impacting upon my functioning. I am trying privately funded psychotherapy however, this does not waive my right to therapy on the NHS which I requested in September. 8.5 months is a very long time to be feeling this unwell and money worries due to my inability to work are becoming increasingly severe. I am no longer able to “live life to the full” I’m merely surviving and getting through each day in the hope that I will get better. However, this hope is fast running out as medication options seem to have been exhausted and the only therapy I’ve been offered is group CBT which I can’t possibly attend. I’ve been told by every psychiatrist and psychologist that I’ve seen that I’m not a “typical” patient so surely I need to be given different treatment from typical patients.

Angry doesn’t even cover how I’m currently feeling. I hardly even know how to express what’s going through my mind. I feel so let down and hurt and knowing that the service that’s meant to help me no longer seems to think that’s possible, is very difficult to handle. I keep trying to hold on, to keep hoping and believing that I’ll get better but that’s fast running out. I want to make it very clear that how my life is at the moment is not ok and I’m doing everything in my power to get well but it’s not working. I have little to look forward to and am lonely and unhappy which along with not being able to do all the normal things I was used to is exacerbating my depression which I would like to remind you is not treatable with medication and so I have to take a huge amount of care to keep it under control. I really need proper therapy that will deal with the issues underlying my depression and now anxiety. I am very aware of what a lot of these issues are but I need a trained therapist to teach me how to deal with them because working through them on my own has proved unsuccessful.

I’ve worked in mental health and I know all too well about the pressures staff are under and the effect that governmental cuts are having. However, I’m ill and I deserve treatment, not to be fobbed off with appointments being eked out by spacing them further and further apart and assessments being delayed because I’m deemed “unsuitable” with no explanation of how or why I’ve been given that label. Why do I never get consulted, informed or even explained to about the decisions that are being made about my care? Why is it not discussed with me? Why do so many meetings get held about me where a group of strangers make crucial decisions about my care having never met me, based on the opinions of one man who seems incapable of advocating my best interests? Why do I not feel listened to or heard but rather pacified, silenced and ignored?

I truly hope that this letter will get across to you the severity of my condition and its effect on my life and that following this I’ll be consulted more about my care and offered suitable treatment so that I can finally get my life back and go back to helping others like me. I’ve wanted to work in Mental Healthcare for the last 7 years and desperately want to make a difference but at the moment I can barely leave the house so how can I do that? Please give me the treatment I need so that I can become a success story and not another in a long line of people let down or denied treatment by the NHS. You can help change my life.

From Lucy.

What Do You Do When The NHS Gives Up On You?

I’ve had ME for 14.5 years, depression for 8 years and an anxiety disorder for nearly 8 months. The NHS are currently in the process of giving up on treating me for the third time. I’d love to say this is a one off. That I’m the only person this has happened to. But, alas, I cannot because that would be a great big fat lie! The more I talk to people with the same or similar conditions to me, the more stories I hear of professionals just giving up on them and no longer offering treatment. Here’s my story of how they’ve given up on me.

The first time I was given up on started when I was 9 when I came down with a terrible cold that was verging on flu in its severity. I never fully recovered from it. I was ill and off school for a couple of months with no energy, headaches, tummy aches and lack of concentration. I went to the doctors but no one knew what was wrong. I had blood tests for coeliac disease and glandular fever, my thyroid was tested, my iron levels were checked, but all of my tests came back clear. I went back to school and functioned normally again and a few months later I was left with no energy, unable to attend school or do much at all. I was a keen ballet dancer but after an hour’s class I was left barely able to move for the next few days and no one had a clue why. I was sent to a paediatrician who sent me for a psychiatric evaluation to see if I was making it up or had a somatic disorder but after an hour of questioning I was deemed to be telling the truth and having physical symptoms that no one could explain. This all went on for a year until I was finally sent to a specialist in London. He diagnosed me with ME/CFS and that was that. We were informed that there was no cure, no reliable treatment, and nothing really that they could advise other than pace myself or I’d continue to relapse and could relapse to the point of being bedridden or even hospitalised. After that I was sent home and told to get in touch with a couple of ME/CFS charities and basically to hope for the best.

Periodically over the years since then I’ve been back to the doctors about various symptoms caused by the ME and every now and again I got sent to a paediatrician or an occupational therapist or a psychologist (to be assessed again because they thought my low attendance at school was because I was school phobic) but I’ve never had any actual treatment and was just told to do my best to manage the condition. The NHS recommends Cognitive Behavioural Therapy (CBT) and Graded Exercise Therapy (GET), though these are highly controversial within the ME/CFS community, but I was never offered these and the closest I ever got was my paediatrician spending 10 minutes drawing a diagram of a staircase and explaining that I needed to become completely able to do the set level of exercise on one step before I made a very small increase to the next and so on or I’d relapse. After the age of 13 I was just left to get on with it, I was practically wheelchair-bound for three years but only got seen by doctors when I needed medical letters as evidence for exam arrangements at school, college and uni. They never even attempted to treat me or any of my symptoms after that.

The second time was years later. I got depression two and a half weeks before my 16th birthday. After a battle with my GP I was referred to CAMHS and put straight on antidepressants with no offer of therapy. I spent the next year deteriorating whilst seeing a specialist nurse weekly or fortnightly and told that I was getting better each week despite getting worse. The medication didn’t help so they put me on a new one and just left me on it for 4 weeks with no check-up or warning that it might make me worse or even suicidal. Those 4 weeks were terrible and made me significantly worse and intensely suicidal. I stopped taking the drugs and got in a lot of trouble with family and my nurse and doctor because I hadn’t done as I was told but I honestly don’t know that I’d still be here if I had continued taking them. They completely altered my mind!

As you may have read in my previous blog post “Mental Illness – The Next Generation”, I then got treatment privately both as an inpatient for 9 weeks and then an outpatient for a few months. Funding ran out and I still needed treatment so I went back to the NHS and got sent to the Adult Services as I was now 18. I was assessed and told I could have Group CBT for 6 weeks. I gave that a go but as I was so much younger than all of the other group members it wasn’t suitable and the group leader said that it wouldn’t help me. I went back for assessment and was told I could have 6 sessions of individual CBT. Bearing in mind I’d spent 9 weeks having intensive group CBT 5 days a week for 9 weeks which hadn’t fixed the problem, this didn’t seem like a helpful option. I was then assessed by another psychiatrist for medication and he said that now I’d tried 5 different antidepressants and found none to be helpful and two that made me much worse, there was very little they could do as I had medication-resistant depression. I was then discharged and told to do my best to keep my negative thoughts at bay and eat well and exercise regularly (well-known cures for depression…. Wait, no they’re not!).

So that was the second time the NHS gave up on me which brings us up to now. Seemingly they’ve exhausted all of the options that they’re prepared to try and I’m now pretty much being left to it. I’ve been reliably informed by my psychiatrist that most patients with anxiety disorders “get themselves better eventually” however, I’ve been given no time frame and the only advice he left me with was to keep pushing and challenging myself. I’d like to point out here that I’ve been doing this for the last 7 months with very little effect.

I knew as soon as I started feeling anxious that I needed treatment and quickly. Something felt terribly wrong and I sensed that I wouldn’t be able to pull myself out of it so after having a terrible panic attack before work on Friday 21st March and struggling to function over that weekend I got an appointment with my GP on the Monday knowing full well that I needed medication. I worked as a nursing assistant at a local psychiatric inpatient unit and am also a psychology graduate so I’m well versed in the medications on offer and the treatments that do and don’t have an effect. My GP offered me Citalopram or Sertraline, both are SSRI anti-depressants, both are drugs I’ve been on before, both made me very ill when I was previously prescribed them. Citalopram made me physically unwell and side effects included stomach ache, vomiting and sedation. Sertraline massively increased my suicidal ideation so much so that I was no longer able to guarantee my own safety and I came off it. I stated these facts to my GP and asked to be prescribed a different drug that I’d not been on before given that I’d only been on 5 out of a list of over 60! I was told that those were my only two options because they’re first-line treatments and so I went with Citalopram. 6 weeks down the line and I was pretty much housebound and suffering terrible side effects that weren’t going away so I was switched to another drug which was even worse. I’ll do another blog post in the future that goes more in depth into the world of antidepressant medication.

Anyway, after begging my GP to refer me to a psychiatrist and her almost refusing because she didn’t think I needed one, I was finally sent to see one and I thought that I was going to get better. He was shocked that my GP had kept me on the medication I was on and said that the drug was “basically poisoning” me and started reducing it straight away and then put me on Pregabalin, an anti-anxiety drug. Since then not a lot has changed. I’m less physically unwell but am still having side effects that dramatically affect my daily functioning. I’ve asked and asked for therapy and was told that I’d finally be sent for an assessment but my psychiatrist has informed me that the therapy I need is very rarely offered because of funding issues and that they’ll almost certainly say no. There has been no mention of any change in medication because there’s nothing else they think will help and all I’m being offered is a 6-week course of Group CBT. I have to take diazepam (valium) in order to get to my psychiatry appointments because I’m so terrified of leaving my flat and last time I missed my appointment because I was having such a severe panic attack that I couldn’t walk or move let alone leave the flat. Going out and sitting on my own in a strange room with complete strangers and talking about anxiety is pretty much as anxiety-provoking as it gets for me at the moment and given that CBT hasn’t helped me in the past, it’s really not an appropriate option. I’ve explained this at every appointment and during every phone call with my psychiatrist because he suggests it every time he’s in contact with me and yet that’s the only option they’re giving me. I should be getting an appointment through for next month which I was told was to be assessed for individual therapy but I’ve now found out that the Group Treatment Programme Service are going to be there too so it’ll be their last–ditch attempt to persuade me to do Group CBT. Following this, they’ll almost certainly discharge me because they’ll spin it that I’m refusing treatment rather than the actual reason which is that they’re not offering me any treatment that I’m well enough to attend. I’m not deemed a good bet for giving therapy to because I’ve not been “cured” by it in the past and I was outright told that the allocation process is based on who is most likely to improve the quickest and that’s clearly not going to be me. I’ll keep you all posted on the outcome of the assessment in December that I’m desperately hoping medication will enable me to attend, but it’s not looking hopeful. Given just how many times my psychiatrist reiterated that most patients with anxiety disorders get themselves better, it’s clear that this is what he’s expecting will happen as he doesn’t think I’m going to be offered any further treatment.

All I’m left wondering is What Do You Do When The NHS Gives Up On You?!