Over the last six months or so I have faced a perfect storm of stressful situations and knock backs that have had a pretty disastrous impact on both my mental and physical health. I have fought to stay in full time work for several months despite the protestations of friends, family, my GP and my mental health team. But if you know me you will know I am someone that will go out of my way to do what they’ve been told they probably can’t. It’s not something I wanted, to have to walk away, especially from something like Buddy which is such an incredible social business but I am grateful that the decision was finally taken out of my hands.
I am really sorry that over the last few months I have withdrawn a lot from the people that care about me. I still can’t talk about the nature of the stresses that have led to this relapse for various reasons, mostly that it’s not my story to tell. But needless to say the last 6 months have been incredibly stressful. If you have seen me in person you will know that I am very unwell as a consequence of what has been going on – If you haven’t seen me you may have picked up this from the few pictures of me I’ve posted (I desperately don’t want to trigger any of you and even I can see I look like a walking bag of bones right now).
I am lucky to have an incredible family, partner, friends and mental health team and GP. My family have banned me from seeking paid employment until the new year at the earliest and will support me in the meantime and my GP and team are closely monitoring my physical and mental health (3.5 hours of therapy a week, monthly GP and blood tests which may come to fortnightly blood tests if my health declines any further.
I will be doing some sessional work and blogging in the meantime as doing nothing is detrimental to my health too but I will be taking the next few months to try and rebuild my shattered body and mind, take up yoga and see my friends and family more – basically practising what I preach and doing some self care.
So essentially I am actually not completely devastated to be unemployed which is what I expected. Last night I slept for 12 straight hours which is the longest I have managed in months. I no longer have the stress of the job and after 6 years I am finally going to have a break longer than 2 weeks (yes the last time I had an actual relaxing break was 2009).
I am just sorry I couldn’t tell you all sooner, I’ve hated lying to you or dodging the truth hence withdrawing.
Particular and undying gratitude to my partner Ryan for his seemingly endless patience and love, to my brother James for getting angry with and for me, Amy-Louise Murray for trying to talk some sense into me when my brain has been less than rational and Kat Pugh and Kenny Johnston of CLASP for never giving up on me.
So there we have it. I’m free for sporadic bits of work like blogs and sessional work but otherwise I will be taking it a lot easier, which I’m sure a lot of you are pretty relieved about.
This weekend marks seven years since I was involved in a particularly traumatic incident. I won’t say what happened, the cause of the trauma is irrelevant to this post, but it was something that went on to change me irrevocably.
Anniversaries of traumatic events are often painful years after any bruises or scars have faded. I must admit to being wildly optimistic and naive for the first few years, expecting it to get exponentially easier each time the date inevitably swings around again. However to my dismay I have learned it doesn’t work like that.
The first year was undoubtedly the worst. I had no point of reference, I had never experienced something so traumatic and had no idea what the anniversary of the date would hold or how I would react, I also had the date burned into my brain so I knew there was no way to trick myself and forget which I thought was an option as so many people told me to “leave the past where it belongs” and not to “be morbid and mark it” because they perceived that as unhealthy and wallowing. So I expected the worst case scenario, quite typical for someone with PTSD, and to be fair I wasn’t far off. I used the day itself to go back through some old diaries and mementoes from that time hoping to find some news clues or perhaps even some closure. This proved to be a mistake, I didn’t find doing this particular activity at all healing until several years later. But that’s me, always trying to run before I can walk. Hell I never expected to develop PTSD in the first place and somehow believed I could just “get over it”, that is wasn’t a “big deal” and move on unaffected.
As the years pass my trauma symptoms diminish but never truly go away. What was initially like an all consuming fire inside me lessened. In the immediate aftermath I was a wreck, I was convinced that my trauma was burned onto my forehead so that everyone could see, just by looking to me, what had happened. Thankfully the flashbacks waned until they were once every couple of months at most, not multiple times day and night. In fact there have been periods of whole months where I have not thought once about that day.
In more recent years I have at times completely forgotten that date, the one I thought would be forever etched in my memory, burned into my grey matter.
Some years I felt I had an obligation to mark the date, some years I have been more than happy to let it slip by with little or no recognition, in fact one year I didn’t remember until several weeks after the date.
This tricked me into believing that all was well and I was putting my past behind me, laying my demons to rest. Unfortunately as I know objectively, but can often forget, trauma doesn’t work like that.
This will be the seventh anniversary and in recent weeks, by total coincidence something was brought up in my group skills class that hit a very painful and well buried nerve that I thought was beyond reach. It sparked the biggest resurgence of PTSD symptoms I have had in years; multiple vivid flashbacks through the day, nightmares, increased hyper-vigilance, trouble getting to and staying asleep and some very physical reactions. For example I unfortunately and accidentally caught a glimpse on television of something that for me is a particularly strong trigger and immediately I was running to the bathroom throwing up bile and shaking like a leaf for the next hour.
This year the anniversary falls on a Sunday so for me this is a real opportunity for me to live by my words and have a bit of #SelfCareSunday. I tend to find either total distraction or total relaxation is the only way to go on the anniversaries and this year I have opted for the latter. My partner, who has stood by my side for the last five anniversaries is well versed in what not to say and how to support me.
So this is how I intend to spend the day:
We’re planning on having a lazy day, not setting our alarms but letting my SAD light wake us up, staying in bed to read comics before watching films. I won’t want to leave the house which he understands so we will stay in and cook together. I have got a Moogle to make me smile, Dreamtime tea for the evening to keep me calm, my Buddy Box, a heatable Bagpuss , lots of loveliness from Lush and my ongoing game of Final Fantasy XII which Ryan and I have been playing. The day, I hope, will pass without incident.
So there we have my take on surviving traumatic holidays from a personal point of view, what I would recommend, if you are unlucky enough to be in a similar situation is this:
- Let people know – it doesn’t have to be a public blog like this but I always think it’s important that someone close to you knows that there is a day approaching that may be difficult for you, that way if you do need any support it can be planned in advance, that way if you need it, it’s there.
- Go with your gut instinct – sometimes it’s totally okay to absolutely ignore the anniversary and sometimes you will feel like doing nothing more than hiding under the duvet with your phone switched off. Reacting to trauma is entirely unique to the individual and we often at a gut level know what we need even if we may struggle to express it verbally due to high levels of distress. If it’s a week day you may feel being at work or university and being distracted is better or you may want to take the day off to reflect or because you’re struggling in which case taking a day of annual leave is a good idea.
- Remember: This too shall pass. As I learnt it doesn’t get exponentially easier each year but it changes. Some years are better than others and there is no roadmap to healing from trauma or official “end date” as much as that would be helpful. All I know is that although this year has been bad I have had much better years in the past and I have faith there will be better days to come.
Well I had a lovely surprise earlier this week when a mysterious package appeared on my doorstep – it turned out to be a Buddy Box from The Blurt Foundation sent by my dear friend Amy-Louise (she also has an awesome mental health blog you should check out). I’ve been having a pretty rough time of things lately and the day it arrived was especially bad but getting this actually did a lot to turn my day around.
I’ve been a massive fan of The Blurt Foundation for a long time, they are a great organisation dedicated to breaking down the stigma around mental health issues and I definitely found a kindred spirit in their CEO Jayne Hardy who is a fierce and dedicated campaigner. They recently started to do these Buddy Boxes which I think are a great way to show friends that you care for them. They’re designed to promote self care and I couldn’t wait to get my hands on one.
So here’s a quick unboxing blog to show you what I got and hopefully encourage some of you to get involved too!
The box itself
The box itself is gorgeous (although the postman managed to bash mine a bit unforunately). I’ve noticed a lot of these box subscriptions lately (Nerd Block etc) and the boxes can be a bit bulky but this is shoebox sized and definitely something I’ll keep after using the contents.
Inside everything is beautifully wrapped and like I mentioned the box is the perfect size so the contents didn’t get knocked and it didn’t seem disappointedly empty like some sub boxes I’ve seen.
The important bit – the contents!
Sorry if this picture is a bit small but essentially here’s what came inside the September Buddy Box:
- Postcards – The first thing you can see when you open the box is a couple of very sweet postcards from Blurt themselves which I thought was a really nice touch
- A notebook – I don’t know if it’s an anxious person thing but I’ve noticed a LOT of us have a bit of a stationary obsession so this is perfect – as much as I’m glued to my phone and technology in general I don’t think I’ll ever be able to give up paper diaries and notebooks and always have one on me. This one is definitely going to be going in my bag.
- A pen – Not just that but a very cool pen which I’m definitely going to double up as a bookmark. Also as it’s flat I think it may actually be easier for me to use when winter and my Raynaud’s really kick in.
- Soap – mmmmm not just any boring soap but gorgeous smelly stuff from Gone Crabbing who are a family run organisation which is nice as I try my best to buy as much as I can from independent companies.
- Socks! I don’t know how they knew but my sock collection is fast depleting so these were very welcome – also they are probably the softest pair I own and very warm which is great for people like me who are secretly cold blooded lizards and therefore ALWAYS cold.
- My favourite bit: craft stuffm – as some of you know I am massively into crafting, having found it a very therapeutic and rewarding activity. Cross stitching obscenities got me through 18 months of a job from hell and I also find that it’s a great distraction for me when I’m feeling anxious (and likely to pick my skin or hair) or feel strong self harm urges. This little craft kit is gorgeous and when I actually have the energy will be a little cactus to match the notebook.
So there you have it! Having received a box I will definitely be paying it forward🙂
I recently had the pleasure of being interviewed by Phil Robinson for a piece in The Times around mental health apps and my own experience of working for and using Buddy in my own treatment. Here is a short extract from the piece – you can find the full article linked to at the bottom of the post.
I was staying at a five-star hotel in Greece when I broke down. I couldn’t move or speak; I wept for no reason. So I was flown home, diagnosed with depression and sent to a private psychiatric hospital, where therapists began rebuilding my mind.
For weeks, with groups of almost broken, funny, and desperate humans, I attempted to learn the tenets of cognitive behavioural therapy (CBT). I didn’t want to be stuck in a room with a bunch of people who had, like me, flunked life, but it saved me. Beyond anything that was said in that room, I was sure that I wasn’t alone.
For people suffering from depression today, access to therapy is no longer a foregone conclusion. But whatever your problem — paranoia, body dysmorphia, BPD, OCD, PTSD — there’s probably an app for it. And this month, the health and life sciences minister George Freeman launched a £650,000 innovation prize to promote the creation of a new generation of mental health software.
So far there are 26 apps (11 are free) recommended by the NHS as part of a drive to automate healthcare, relieve waiting lists for talking therapies and reduce the £100 billion that it spends on treating mental health patients every year.
One, called Buddy, has been used by 12 NHS trusts and has been used by more than 17,000 people. An SMS and browser-based diary and communication tool, it’s designed to be used in conjunction with seeing a therapist, says Kat Cormack, who is Client Director of Buddy but also uses it “in my own treatment”.
I get a daily text from Buddy,” she says. “‘Hi Kat, Buddy here, how are you doing? Rate your day from 1 to 5 and tell us how you feel!’” As well as rating her state of mind, she can add notes. “It’s connected to my clinician, so I can tell her things that I might not be able to say looking her in the eye. I can confess my darkest secrets.
By analysing the data, a clinician can monitor a patient’s progress or use it to aid diagnosis. She cites a woman whose long-term depression was revealed to be hormonal after her Buddy data was found to correlate with information from another app tracking her menstrual cycle. “She changed her medication and is now free of depression for the first time in decades.”
When I was being treated for depression in the Nineties, I saw my therapist once a week, my psychiatrist once a month. I can see that apps present an opportunity to collect evidence to hasten recovery, yet the ability of most apps to deliver a quality service to vulnerable people remains questionable.
Away from the NHS’s recommended apps page, there are thousands of apps dealing with every condition. In most cases their publishers are as obscure as the evidence of their clinical efficacy. At one end of the spectrum you have apps such as MoodKit, the product of the experience of two respected doctors; at the other you have apps such as Fukitol, which is named after a Robin Williams joke.
The industry is still in its infancy and evidence from clinical evaluation trials is scarce. However, in 2013, a study of Viary, a Swedish app for depression, found that 73.5 per cent of patients who used the app were no longer considered depressed after eight weeks and needed half as many therapy sessions as those who engaged in therapy without it.
The result offers a glimpse of why these apps have been seized on as the holy grail of mental healthcare: promoted as a form of triage, they enable health services to push users to take responsibility for themselves and to cut face-to-face therapy.
Cormack is aware that digital tools such as hers are used by people who are frantic for NHS counselling but have not received it.
The waiting list for an assessment can be up to a year. That’s why people are using apps — they are either a stopgap when you are on a waiting list, or if the NHS has told you that you don’t meet their criteria. People get desperate. We are losing lots of low-cost counselling services because they can’t survive in this financial landscape
When I was at my lowest, between 1998 and 2002, it was always possible to see a counsellor at my local surgery. In 2015, a GP refers people like me to IAPT, an acronym for the suspiciously titled “Improving Access to Psychological Therapies”. It’s a stepped care program that begins with an assessment by phone from a “psychological wellbeing therapist”. Those assessed to have a condition that is interfering moderately with their lives are given a computerised CBT course to complete at home.
If this magic bullet fails, they are given self-help options, or signed up to a 100-person psychoeducation class (like speed awareness courses for people with depression). If you still stubbornly fail to regain your mojo, you can join a year-long waiting list for talking therapies, during which time you can use one of the many apps. The hope throughout this process is that patients simply disappear from the waiting lists as cured, or over the worst of it.
Therapy via healthcare app might seem like treatment purgatory, but anecdotal evidence from practitioners suggests that apps for depression and anxiety work particularly well with certain sectors of the population, such as the military and teenagers, who are notoriously reluctant to talk about emotions.
This is just an extract, the full piece on The Times website (subscription service).
We are lucky to live in a world where most conditions are treatable, and as many slogans go “beatable”. For many of us our experiences of illnesses have been followed by effective treatment leading to remission. If I have a cold or flu I know there are tablets I can take that will make it go away. If I break a bone I know a cast will help knit the bones back together and leave me, hopefully, with full function in that limb again. This is a model that certainly in the UK the NHS and ministers understand.
What then if your condition has a murkier prognosis? What if there is no cure or a high chance of repeated relapse? It’s not only then a struggle often for the treatment and management needed but also a huge philosophical concept to bend one’s head around. It’s also, I’ve found, a difficult one for friends and family because they can’t “fix” it and that hurts.
Many of you will be aware of the “spoonie movement” which was originally created for those with chronic physical health conditions, hence when I was always restrained in my use of the word and felt uncomfortable labelling myself as part of that community.
However my mind is changing on that front.
I have been ill for 20 of my 26 years on this planet, I have approximately 7 conditions and have had more treatment than most and yet here I am, still chronically ill.
My issues are around my mental health, although some conditions are now in remission I still struggle with Major Depressive Disorder, Anorexia Nervosa, Generalised Anxiety Disorder and Obsessive Compulsive Disorder.
Right now it’s Anorexia and Anxiety that are majorly kicking my ass (to use non medical parlance), I am currently in my third full round of treatment and admittedly it is much more intensive than I have experienced elsewhere (thanks postcode lottery) but so far it’s barely scratching the surface. I have been ill so long I don’t have a “before” to remember and strive for. In fact research suggests that if an Eating Disorder is present for seven years your prognosis is not good – so with 13 years under my belt I’m not feeling hopeful.
I spoke to an Eating Disorder consultant recently who reintroduced me to the term “SEED” or Severe and Enduring Eating Disorder. One of her patients was offended by this – “I don’t want to be a seed, I want to be a flower”. I think this is very powerful and says a lot about our chronic patients – we often feel like a burden and hopeless – something I myself experienced when my CAMHS team aged 17 told me they had “run out of options”. As chronic patients we are fully aware we are difficult and complex but please don’t throw up your hands and give up on us. And please, we’ve been living these conditions for a very long time so take us seriously.
This is also why I’m seeing a strong backlash in the mental health community against the “recovery” movement and also the government’s seeming need to define “recovery” as “in work”. Recovery is fabulous and we should strive for the best for our patients but let’s not give false hope. Some of us, may never recover. We may take medication for the rest of our lives. We may have to surf the waves of our illnesses ad nauseum for decades.
12 sessions won’t fix us.
Living with a chronic illness is bloody difficult to say the least, I would offer a day in my shoes but you would know you could take those shoes off at the end of the day. I can’t. There is no real comparison.
There are points we cope well, we say “f*** you” to our bodies and fight for what WE want, even though this often ends up in a body backlash (case in point I slept 19 hours after a 2 day trip to Manchester recently”). There are points when either through medication or the boom/bust cycle many of us experience we can function like “normal” human beings. And we rarely “look sick”. When you see us and tell us how “well” we look it’s probably the first time in awhile we’ve been able to leave the house. For more on this check out the brilliant But You Don’t Look Sick.
However there are points, and I’m sorry to say I’m here now, when we get desperate, when something snaps.
I feel lost and hopeless right now. I have had 10 years on and off of almost every therapy NICE approves, I’m 31 weeks into an experimental non NICE approved group therapy, I stopped counting when I tried the 20th medication, I’ve tried everything over the counter and even tried Acupuncture. I’ve tried to sign up to experimental treatment studies including TMS, I’ve taken meds that I shouldn’t due to contraindications or legal issues because anything is better than how this feels. Which of course leads to risky behaviours.
Some doctors are sympathetic (thankfully my current one is) and if you find a good GP cling on for dear life. A conversation with a previous GP went like this:
Me: Well if you won’t prescribe me benzos, I’ve tried every other med under the sun that I can, what am I meant to do to deal with my crippling anxiety while also working full time, commuting and trying desperately to keep a roof over my head?
GP: Just cope.
Chronic illnesses are sneaky too. I thought I had come to terms with what I had done to myself some time ago – more around my scars. Now though, age 26 I am beginning to experience more of the physical side effects and it’s currently having a very detrimental effect on my work and relationships with friends and family because I am not strong or well enough to do basic tasks that were once a piece of cake.
Currently I am struggling massively with fatigue, constant aches and pains and raging anxiety which means headaches, uncontrollable shaking, brain fog and many more very physical symptoms – bolstering my argument that this mental/physical health divide is bogus.
Having a chronic condition means redefining your “normal” and managing your expectations. Maybe once upon a time running 10k was an option, maybe today you should applaud yourself for just getting out of bed. It’s tough. I know, I have tried but when you have low self esteem it can be hard to see boiling a kettle as an achievement.
I don’t know much admittedly but I would recommend above all:
- Find a sympathetic GP and work with them to build an understanding health team around you
- Talk to your friends, don’t withdraw or cover up what’s happening – from my experience you will be surprised how many understand and will support you. Some won’t, some may withdraw, that will hurt but ultimately show you who your true friends are.
- Find your “tribe”. I’ve been running support communities, mostly around mental health for the last 13 years and they have not only changed but saved my life. Find people who understand and won’t judge and lean on them when you need them.
This may be triggering for some but I think it’s worth watching. There are some people out there who strive for sickness, think being sectioned is a positive. This is the reality.
Last August I was sectioned under the Mental Health Act and spend two months in hospital. When I was discharged I decided that I wanted to do something with my life and turn a negative into a positive and so I began working with Fixers. Around the same time I noticed a lot of pro-ana and pro-mental illness posts appearing all over social networking and one comment that really stuck out to me was someone saying that they wanted to be sectioned so that they could have a hug whenever their sad. I was also shocked by the amount of comments about mental illness being fashionable and people likening the psychiatric ward to a big sleepover but that is not the reality.
I wrote a spoken word piece and used my photography along with Fixer’s filming and editing to create a piece to explain what being sectioned is like from…
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