I've not blogged for a few weeks as I have been attempting a personal recovery revolution. Turns out mental health services are so ridiculously stretched that unless I am trying to end my life, the wait for help is 2 years. I threw a minor tantrum at my mental health service, the first of my entire secondary care career, which has resulted in a few sessions of schema work/domain work being offered (To help challenge blueprint behaviours entrenched from early life) and an agreement that I should go on the waiting list for psychotherapy.
I discussed this with my GP, who, after also throwing a minor tantrum about the NHS and mental heath care himself, signed me off work for another 3 months to pursue self-help courses at recovery college. These will be anxiety management, the role of comedy in recovery and somantics. I'll be less stressed telling jokes about suicide in a flexible muscle stance!
I have also had the joy of my ESA being suspended this week. They won't pay you if your sick note doesn't arrive either in advance of the end of your last one, or the day after. You cannot get a sick note from a GP in advance. Also, post to the DWP takes 3 weeks to get to the right department. I ended up cashing in Ian's 2p jar to pay for parking, driving on fumes to Leicester, sat in the jobcentre plus office for 90 minutes, and got is scanned and sent via email encryption. They grilled me about my identity, why my kids weren't on the system, am I a single parent and why am I not receiving any other benefits, why didn't I get my note in on time and no I cannot tell you why your capability assessment information hasn't yet been processed... since August. I will take a plastic bag to sit on next time. The place is filthy. I then had to come home and wait for a phone call to clarify my identity again, and discuss whether or not to "Unsuspend" my claim and pay me. They decided YES, but it could take 24 hours. The mind boggles. They have shame and degradation down to a fine art.
I also got a tax bill. Apparently at some point, I earned a fraction over the limit of the basic earnings, therefor, I needed to be taxed on any other income, in this instance, ESA. Yes, taxed on my benefits. So I have to pay £328 in April.
I'm sorry your brain is experiencing technical problems. Please allow us to shaft you in as many ways as possible to help you reach the suicidal rock bottom required for treatment, at which point we might assist you.
So here are my achievements for the month of November and early December :
Not killing anyone in a government office or health profession
Cleaning the fridge
Washing the car by hand and cleaning out the inside
Perfecting cookie making
Not using the C word half as much as I would really like to
Being really pushy with services - so not me!
Attending recovery college and planning new courses
Surviving an argument with Ian - think it's about the 3rd one we've had in 17 years!
Still parenting with compassion when the kids are like Regan from the exorcist
Attempting to live the spiritual life in pretty challenging scenarios
It's not strictly rock 'n' roll but it's a damn site better than being bullied by the Vicar from hell or feeling that I cannot carry on living. Actually, I'm a very lucky girl.
Wednesday, 7 December 2016
Thursday, 10 November 2016
Revelations at recovery college
So we have a recovery college in Leicester. It has a few full time mental health staff and runs courses that might help improve mental health recovery, build confidence and get you to meet other folk in your situation. It's been running for about 3 years. My friend has been and my GP suggested it. I called them and signed up and have done a few short courses, 2 hours long, just to get my toes wet. I did creative writing and poetry, and also did a stint of mindfullness.
However yesterday I started the "Living with bipolar" course. Its a few hours one afternoon a week, over 5 weeks, and covers basic diagnosis, pharmacology, living strategies and relapse prevention. It was great to sit with other "polar bears" as one lady called them and listen to some of their experience, symptoms and hope. But the thing that really grabbed me was a single slide entitled, "NICE guidance for bipolar disorder". Although I am reasonably bright, I can also be pretty dumb and trustworthy when it comes to services. I fall into the trap of thinking that they have my best interests at heart and are doing everything in their power to help me get well. I am naive I know. Sorry.
So it shows briefly on the magic slide, the recommended treatment for people like me. Now don't get me wrong I have had some intervention but what I feel I actually need, I have not had. I did a CBT course in understanding depression 6 years ago. I did self esteem CBT 6 years ago. I asked to go on the bipolar course 6 years ago. Nothing ever transpired. I asked if I could have psychotherapy. "You are currently too unstable and the waiting list is 2 years." They wouldn't even put me on the waiting list. I wanted to to get some help for my anxiety. Your anxiety isn't debilitating enough to warrant treatment, and even if you did, the waiting list is 2 years. I'm meant to be linked into support groups. I was told not to go as the local bipolar group wouldn't be helpful for me. I am blessed with family intervention, but this is about symptom management and helping my husband not to have a freak out super meltdown when things go wrong. It's not about me getting some permanent recovery.
So yesterday I came home and read the guidance in full. It also says I should have a lead care co-ordinator overseeing my care and reviewing my case regularly. I should have an up to date care plan and I should have an up to date risk assessment that is inclusive of my families input. I should have an emergency pre-planning document so that if I am so unwell I cannot decide on my care, the plan is already agreed and signed.
What I have realised today is that I am a patient in the void. I am not in crisis and am deemed "Well enough" not to be on the CPA, therefore, I don't have a CPN. I am too ill to be in primary care or supported psychologically through primary care agencies. I am not well enough to work. If I work my level of stress and fatigue rocket at such a rate I get ill with a matter of weeks. I also struggle with psychological issues of intrusive thoughts and as I haven't dealt with certain issues in my life, I also end up emotionally shredded when bullied or in conflict or unsupported. However, I'm pretty sure when ESA actually get back to me about my work capability test, they'll say I'm fit enough to do a 40 hour week (Probably cleaning where the intrusive mind of mine will want to constantly make me drink bleach). No offence cleaners, its the chemicals that are my issue!
So I called my team and said, "I want a review. Who is my care co-ordinator?". After some minutes, it was decided the new locum psychiatrist would probably be the guilty party. Well that's a bit pants as he's crap, so I tell you what, these are my issues, this is what I want sorted and I want someone to help me get a solution and a plan. "OK, we'll see if we can get a review organised for you as soon as possible. Someone will call you back."
In the mean time, I will continue to flail about in the void, trying my damnedest not to drown or relapse, and I will push on with my recovery, doing most of the work myself in the hope that if nothing else transpires at least I am trying to do something to make me better.
However yesterday I started the "Living with bipolar" course. Its a few hours one afternoon a week, over 5 weeks, and covers basic diagnosis, pharmacology, living strategies and relapse prevention. It was great to sit with other "polar bears" as one lady called them and listen to some of their experience, symptoms and hope. But the thing that really grabbed me was a single slide entitled, "NICE guidance for bipolar disorder". Although I am reasonably bright, I can also be pretty dumb and trustworthy when it comes to services. I fall into the trap of thinking that they have my best interests at heart and are doing everything in their power to help me get well. I am naive I know. Sorry.
So it shows briefly on the magic slide, the recommended treatment for people like me. Now don't get me wrong I have had some intervention but what I feel I actually need, I have not had. I did a CBT course in understanding depression 6 years ago. I did self esteem CBT 6 years ago. I asked to go on the bipolar course 6 years ago. Nothing ever transpired. I asked if I could have psychotherapy. "You are currently too unstable and the waiting list is 2 years." They wouldn't even put me on the waiting list. I wanted to to get some help for my anxiety. Your anxiety isn't debilitating enough to warrant treatment, and even if you did, the waiting list is 2 years. I'm meant to be linked into support groups. I was told not to go as the local bipolar group wouldn't be helpful for me. I am blessed with family intervention, but this is about symptom management and helping my husband not to have a freak out super meltdown when things go wrong. It's not about me getting some permanent recovery.
So yesterday I came home and read the guidance in full. It also says I should have a lead care co-ordinator overseeing my care and reviewing my case regularly. I should have an up to date care plan and I should have an up to date risk assessment that is inclusive of my families input. I should have an emergency pre-planning document so that if I am so unwell I cannot decide on my care, the plan is already agreed and signed.
What I have realised today is that I am a patient in the void. I am not in crisis and am deemed "Well enough" not to be on the CPA, therefore, I don't have a CPN. I am too ill to be in primary care or supported psychologically through primary care agencies. I am not well enough to work. If I work my level of stress and fatigue rocket at such a rate I get ill with a matter of weeks. I also struggle with psychological issues of intrusive thoughts and as I haven't dealt with certain issues in my life, I also end up emotionally shredded when bullied or in conflict or unsupported. However, I'm pretty sure when ESA actually get back to me about my work capability test, they'll say I'm fit enough to do a 40 hour week (Probably cleaning where the intrusive mind of mine will want to constantly make me drink bleach). No offence cleaners, its the chemicals that are my issue!
So I called my team and said, "I want a review. Who is my care co-ordinator?". After some minutes, it was decided the new locum psychiatrist would probably be the guilty party. Well that's a bit pants as he's crap, so I tell you what, these are my issues, this is what I want sorted and I want someone to help me get a solution and a plan. "OK, we'll see if we can get a review organised for you as soon as possible. Someone will call you back."
In the mean time, I will continue to flail about in the void, trying my damnedest not to drown or relapse, and I will push on with my recovery, doing most of the work myself in the hope that if nothing else transpires at least I am trying to do something to make me better.
Friday, 4 November 2016
Remembering the past and echoes in the present (Hard reading - trigger warning DV)
David Stokes of Hinkley, a town 7 miles from me, killed his sons Mathew and Adam and himself yesterday. He also tried to kill his wife Sally who survived with serious head injuries. He'd barricaded them in the house for 5 hours before it came to a tragic conclusion. The married couple had separated but were living together for the sake of the children, but she had asked for a divorce. Comments about how lovely they seemed, how normal they were and "you never know what goes on behind closed doors" were rife.
I cannot imagine the terror that they all experienced in those 5 hours. I cried for the children who would never know a full life and for a woman who will never be able to live a normal life ever again. But what is more concerning for me is that this happened at all. I don't claim to be a specialist in domestic violence or emotional abuse but do these things just happen as a one-off extraordinary event, or is there behaviour and history leading up to it? I think the later may be true. And it is hidden.
Violence against women and girls is a hot topic, but abuse is still common and concealed. There are criminal and civil laws protecting victims, including men, people in same sex relationships, honour based violence etc. but silence, fear and shame still play a huge part in speaking out and getting help.
And for me how mental health plays into this is massive. Not only can a victim become mentally ill as a result of abuse, but if you were already unwell, the results can be catastrophic. Self esteem is shattered, anxiety is increased, stress and fear are your constant companions, and experiencing mind games and manipulation makes you question your sanity. You may also be denied access to medication and specialist support. Also the internal dialogue of "Maybe it isn't as bad as I think", or "it's just a phase", or "He's not like it with anyone else and they all think he's a great bloke" bounce around like accusatory tennis balls telling you you are making a big deal about it. There is also the bare faced lies you tell because if you do tell the truth you might get your face punched in.
My own experience thankfully didn't result in the loss of life but did result in me trying to top myself twice, the second time very nearly successfully. I was 18 and it lasted nearly 3 years. I didn't have insight into my mental health at the time but I knew things were not right. Also domestic violence wasn't illegal at that point. Even now very few people know the extent of my experience and what I endured. Some of the friends who were around at that time knew he was bad news. A few warned me (Who I dismissed as I din't want to listen or believe at the time), some saw things but I played it down, but eventually I made a break for it. I was homeless, penniless, owned only enough clothes to fit in a kit bag and was broken mentally and emotionally. He was skilled at his craft and I was at a complete loss to cope with what happened. I have a pretty unshakeable belief that people are essentially good. I want to believe that all people are capable of love and compassion. In this situation it was my undoing.
The timeline of behaviours went like this:
Drip fed criticism and undermining of self esteem
Financial exploitation
Manipulation of the truth and lying
Constantly comparing me to others and saying I came up short
Questioning my mental and emotional health when I challenged
Explosive outbursts and shouting
Smashing things up around me and throwing things around or at me
Trying to separate me from friends and family
Pushing and shoving and threatening
Telling lies about me to others
Physical assault, usually punching in arms, kicking in stomach, restraining. Very rarely face as it shows. Usually behind closed doors. By the way when you get punched you do see stars.
Sexual assault/rape and drugging me
Smashing my head against a wall in public outside a busy restaurant
Threatening to kill me whilst pinned with a large hunting knife at my throat
My behaviour throughout this time was not fabulous, but looking on this list now, if a bloke even went to the first sentence I'd be kicking off. Writing this is actually very hard. It was 25 years ago but never leaves me. I lost myself and it has taken many years to reclaim me. I pray that Sally of Hinkley can get help and be supported into some kind of recovery. Normality will not be something that comes easily and this will never be OK for her. Also, if any of you read that list, identify with it from your past or present, do something about it. There is help available for both your mental health and domestic abuse issues. Be empowered, be a survivor, do not let your past define you now. Despite the historical chaos and terror, rise in love and still believe in the goodness of humankind.
I cannot imagine the terror that they all experienced in those 5 hours. I cried for the children who would never know a full life and for a woman who will never be able to live a normal life ever again. But what is more concerning for me is that this happened at all. I don't claim to be a specialist in domestic violence or emotional abuse but do these things just happen as a one-off extraordinary event, or is there behaviour and history leading up to it? I think the later may be true. And it is hidden.
Violence against women and girls is a hot topic, but abuse is still common and concealed. There are criminal and civil laws protecting victims, including men, people in same sex relationships, honour based violence etc. but silence, fear and shame still play a huge part in speaking out and getting help.
And for me how mental health plays into this is massive. Not only can a victim become mentally ill as a result of abuse, but if you were already unwell, the results can be catastrophic. Self esteem is shattered, anxiety is increased, stress and fear are your constant companions, and experiencing mind games and manipulation makes you question your sanity. You may also be denied access to medication and specialist support. Also the internal dialogue of "Maybe it isn't as bad as I think", or "it's just a phase", or "He's not like it with anyone else and they all think he's a great bloke" bounce around like accusatory tennis balls telling you you are making a big deal about it. There is also the bare faced lies you tell because if you do tell the truth you might get your face punched in.
My own experience thankfully didn't result in the loss of life but did result in me trying to top myself twice, the second time very nearly successfully. I was 18 and it lasted nearly 3 years. I didn't have insight into my mental health at the time but I knew things were not right. Also domestic violence wasn't illegal at that point. Even now very few people know the extent of my experience and what I endured. Some of the friends who were around at that time knew he was bad news. A few warned me (Who I dismissed as I din't want to listen or believe at the time), some saw things but I played it down, but eventually I made a break for it. I was homeless, penniless, owned only enough clothes to fit in a kit bag and was broken mentally and emotionally. He was skilled at his craft and I was at a complete loss to cope with what happened. I have a pretty unshakeable belief that people are essentially good. I want to believe that all people are capable of love and compassion. In this situation it was my undoing.
The timeline of behaviours went like this:
Drip fed criticism and undermining of self esteem
Financial exploitation
Manipulation of the truth and lying
Constantly comparing me to others and saying I came up short
Questioning my mental and emotional health when I challenged
Explosive outbursts and shouting
Smashing things up around me and throwing things around or at me
Trying to separate me from friends and family
Pushing and shoving and threatening
Telling lies about me to others
Physical assault, usually punching in arms, kicking in stomach, restraining. Very rarely face as it shows. Usually behind closed doors. By the way when you get punched you do see stars.
Sexual assault/rape and drugging me
Smashing my head against a wall in public outside a busy restaurant
Threatening to kill me whilst pinned with a large hunting knife at my throat
My behaviour throughout this time was not fabulous, but looking on this list now, if a bloke even went to the first sentence I'd be kicking off. Writing this is actually very hard. It was 25 years ago but never leaves me. I lost myself and it has taken many years to reclaim me. I pray that Sally of Hinkley can get help and be supported into some kind of recovery. Normality will not be something that comes easily and this will never be OK for her. Also, if any of you read that list, identify with it from your past or present, do something about it. There is help available for both your mental health and domestic abuse issues. Be empowered, be a survivor, do not let your past define you now. Despite the historical chaos and terror, rise in love and still believe in the goodness of humankind.
Wednesday, 26 October 2016
I went to the psychiatrist
So I went for my visit. I don't see my psychiatrist that often, maybe every 4-6 months unless I'm in crisis. Then, I see the crisis team and other psychiatrists for a short period of assessment and care until the crisis has passed. We then return to normal format of very little. So When I do go I try and be focused, direct and not ramble. There isn't time. I am fully aware that services are financially stretched, staff rotate, leave or move sideways, and things in mental health are particularly tough. So today I knew my established psychiatrist had left and a locum was in post. I had to be understanding and flexible.
A huge part of my illness and lack of initial engagement with treatment was about trust. Before getting help, I trusted absolutely noone, told noone what was in my head or my heart, was pathologically hostile to institutions and people of "Control" and was a self contained moon unit floating about in society. Over time, I have learned to open up and to practice trust in all areas of my life. Sometimes that bites you in the backside, but generally, it has been fruitful. So when I got to an institution, to talk to a stranger, exposing my inner most being, I feel quite anxious and try really hard to manage my expectations. I have to build myself up to it and walk myself through it. My underlying motivation is wellness and recovery.
So I spend the next 40 minutes feeling totally conflicted. The whole episode is an effort. Psychiatrist X I will name them, is running on time I am told. Good. I get in their office and spend 15 minutes sitting there whilst psychiatrist X talks on the phone to an IT engineer as they cannot log on the system and read my notes. Finally the system boots up and psychiatrist X reads from a letter from my paper file about my last visit. Verbatim. Finally I am asked how I am. I'm on the clock so I keep it brief but direct.
Not manic or suicidal
Intrusive thoughts quite noisy
Mood erratic and motivation sporadic
Anxiety high
Doing anything out of my basic routine throws me totally and my mood vibrates wildly
Lithium side effects are quite annoying
Not sleeping well
Other than that I function quite well but I would really like to feel better.
What do you mean about "Noisy intrusive thoughts"? I assumed psychiatrist X understood intrusive thinking but maybe it needs explaining for them to judge my wellness. But are you actually harming yourself? Er no, but intrusive thoughts aren't about me hurting myself it's about raised anxiety and distress affected by mood. Are you suicidal. Er no I said I wasn't. Excuse me, please can you tell me if the IAPT service contacted you about anxiety therapy after they rejected my application due to me being in secondary care? No. Well can you help? I don't know. I can talk to MDT and see what they say. Come back in 3 months and I suggest you just do less and see what happens. Oh and don't work.
Chocolate tea pot springs to mind. The local postman could have told me that. So I waited four and a half months to get some help and input and received zilch. I suppose what bothers me the most is that I am expected to spill my guts to a complete stranger, make myself totally vulnerable and "Engage" with services, only to be told that actually there wasn't much point in you coming. Basically, as you are not at the point of hanging yourself or hurting someone else, I'm not in a position to offer you constructive input. Not set up for that. Probably too expensive, and not available for 2 years even if it was. I actually want to be well. The government bang on about the cost of mental ill health both to employers and the welfare state, but they have cut budgets by £600 million in real terms over the last 5 years. (http://www.nhsconfed.org/-/media/Confederation/Files/Publications/Documents/)
If you can't get treated, you can't get well, you cannot work and pay back in to the system for other poorly folk. Fucktards. It's not rocket science! Sorry. I'm feeling angry. Now I'm crying with frustration.
I wish sometimes that I could be on the other side and understand why things are structured the way they are, why it is I cannot access help without jumping through ridiculous hoops, why it is that I'm in secondary care and ill, but not ill enough to warrant some kind of regular support. I am not privy to the club rules.
Anyway, tomorrows another day. I will continue to plod and reach out for wellness regardless of you lot and the rules. I'm going to nurture my inner child with an ice pop and a Disney film. Cheerio!
A huge part of my illness and lack of initial engagement with treatment was about trust. Before getting help, I trusted absolutely noone, told noone what was in my head or my heart, was pathologically hostile to institutions and people of "Control" and was a self contained moon unit floating about in society. Over time, I have learned to open up and to practice trust in all areas of my life. Sometimes that bites you in the backside, but generally, it has been fruitful. So when I got to an institution, to talk to a stranger, exposing my inner most being, I feel quite anxious and try really hard to manage my expectations. I have to build myself up to it and walk myself through it. My underlying motivation is wellness and recovery.
So I spend the next 40 minutes feeling totally conflicted. The whole episode is an effort. Psychiatrist X I will name them, is running on time I am told. Good. I get in their office and spend 15 minutes sitting there whilst psychiatrist X talks on the phone to an IT engineer as they cannot log on the system and read my notes. Finally the system boots up and psychiatrist X reads from a letter from my paper file about my last visit. Verbatim. Finally I am asked how I am. I'm on the clock so I keep it brief but direct.
Not manic or suicidal
Intrusive thoughts quite noisy
Mood erratic and motivation sporadic
Anxiety high
Doing anything out of my basic routine throws me totally and my mood vibrates wildly
Lithium side effects are quite annoying
Not sleeping well
Other than that I function quite well but I would really like to feel better.
What do you mean about "Noisy intrusive thoughts"? I assumed psychiatrist X understood intrusive thinking but maybe it needs explaining for them to judge my wellness. But are you actually harming yourself? Er no, but intrusive thoughts aren't about me hurting myself it's about raised anxiety and distress affected by mood. Are you suicidal. Er no I said I wasn't. Excuse me, please can you tell me if the IAPT service contacted you about anxiety therapy after they rejected my application due to me being in secondary care? No. Well can you help? I don't know. I can talk to MDT and see what they say. Come back in 3 months and I suggest you just do less and see what happens. Oh and don't work.
Chocolate tea pot springs to mind. The local postman could have told me that. So I waited four and a half months to get some help and input and received zilch. I suppose what bothers me the most is that I am expected to spill my guts to a complete stranger, make myself totally vulnerable and "Engage" with services, only to be told that actually there wasn't much point in you coming. Basically, as you are not at the point of hanging yourself or hurting someone else, I'm not in a position to offer you constructive input. Not set up for that. Probably too expensive, and not available for 2 years even if it was. I actually want to be well. The government bang on about the cost of mental ill health both to employers and the welfare state, but they have cut budgets by £600 million in real terms over the last 5 years. (http://www.nhsconfed.org/-/media/Confederation/Files/Publications/Documents/)
If you can't get treated, you can't get well, you cannot work and pay back in to the system for other poorly folk. Fucktards. It's not rocket science! Sorry. I'm feeling angry. Now I'm crying with frustration.
I wish sometimes that I could be on the other side and understand why things are structured the way they are, why it is I cannot access help without jumping through ridiculous hoops, why it is that I'm in secondary care and ill, but not ill enough to warrant some kind of regular support. I am not privy to the club rules.
Anyway, tomorrows another day. I will continue to plod and reach out for wellness regardless of you lot and the rules. I'm going to nurture my inner child with an ice pop and a Disney film. Cheerio!
Sunday, 23 October 2016
Employing strategies
I have recently been on holiday for a week, and it reminds me that any change in environment triggers unmanageability in my brain. I have to employ strategies to keep myself on an even keel, and recognise what is needed at any given time to balance me out. Triggers for me are things like lack of sleep and/or change in sleep patterns, therefore, chronic tiredness, stress, physical illness, fear, raised anxiety, forgetting to take my medication at the right time, new chemicals/glass/sharp objects/cliffs etc. that trigger intrusive thoughts, and being given free shots after a meal out (AVOID).
I take my metaphorical strategy tool box with me wherever I go. It's filled with all sorts of quirky stuff that actually really helps if you deploy it when needed. Sometimes you have to find a quiet toilet in order to get to your toolbox, but essentially you can use it on the go. Let me share some of my toolbox with you.
1) Recognising unhelpful thinking styles
CBT techniques get you to challenge your thought processes such as black and white thinking, catastrophising, inappropriate mental filtering, over generalising, negative labelling and emotional reasoning. Yes I do all of these. Basically you have to practise listing reality and redirecting your brain to that. It stops you speculating and getting lost in the forest of your own ridiculous thoughts.
2) Sleep hygiene
Sleeping properly. At the same time each night, with no stimulation like TV or mobile phones, no reading, no caffeine, appropriate wind down like meditation and a nice warm bath, cool room, darkness and not getting overheated. If I don't sleep properly, my mood nose dives. Chronic fatigue is also a mania trigger. Insomnia for me is very bad news.
3) Exposure therapy techniques
This helps me to challenge hideous intrusive thoughts, helps me to move through any avoidance and desensitises me to the trigger. With an intrusive thought your head tells you it's really going to happen or you are really going to do it. So for example, the kids are walking along the path near a cliff that has a wall about 2 feet high. The drop on the other side is steep and rocky. They want to jump on and off it, push each other around and generally be a little unsafe. Intrusive thought head sees dead children, broken and covered in blood at the bottom of the cliff, which in my whole body sensation feels real. I start to hyperventilate, heart races, clammy hands, major panic sensations and mild hysteria. This can result in screeching, dragging children away from the edge physically, really over reacting and children feeling slightly confused about mental parent. Exposure response is to go with children, lay across the wall on our chests, look over the edge and experience weird tingly bum sensation of vertigo, discuss general safety and walk away. Let them do some jumping. I will breathe through it. I have also had to do the whole knives in the sink with wine glasses, drinking tea next to a bottle of bleach, flirting with the fabric softener and sharing with my husband that my head just told me to poo in a plastic bag and leave it in the glove compartment of the hire car. It is random and totally unhinged. Thankfully I don't act out on it! I know I'm bonkers.
4) Mindfulness
This helps to slow down and refocus the "Head traffic" that I get on a regular basis. It gives me a place to detach from the noise and keep it simple. I can step back, observe the thoughts and allow them to pass without engaging with them.
5) Doing something physical and/or challenging demotivation
When things are off balance, I can feel very demotivated. I have to force myself to do something, or try to do something, even if it's very simple. Walk, swim, do the washing up, cook, say yes when really you want to say no. This makes your endorphin's start swishing around a bit and makes you feel more uplifted and positive.
6) 12 step program
I could write about this for the rest of my life. Very simply, I cannot drink/use like other people. I accept this and on a 24 hour basis I do not use mind altering substances, I work on my behaviour, I am compassionate to myself and others, I trust that my higher power will guide me spiritually, I help others out when I can and I make a concerted effort to not be an arsehole.
7) Singing very loudly
Do I really need to explain this? I do this usually on my own in the kitchen when cooking and cleaning, or, in my car. This means I am alone and can pretend I am amazing at singing when quite clearly I am not! Really helps to channel my emotions.
8) Asking for a cuddle
Sometimes gentle physical contact and affection can make all the difference. It warms you, helps you to feel loved as well as held physically and emotionally.
9) Body scanning and mood/thought monitoring
This is really important for me in managing anxiety. Anxiety for me is a whole mind and body experience, and when I am in it, I need to anchor myself to a practical framework to help me scale myself down. So I check through what my body is doing as well as what my mind is trying to sell me at a particular time. Slow down the breathing, move to a quieter place to sit down, touch something tangible and mindfully feel it, reality check myself to reduce fear, what is real and what is fiction.
10) Humour
Humour is a God send and a life saver. My illness is life threatening and very serious. If I get too caught up in all of that I might as well give up. I cannot take myself too seriously and humourising my situation can make it feel more acceptable to me and others. And it is laughable some of the stuff that goes on in my head.
You know I have a choice as to how I live with my illness and I think from very early on I knew that I would have to work at being well. And I do most of the time. Sometimes things are too difficult and I seem unable to use anything to help me. I'm just in it and have to ride it out. Other times I am like SAS recovery bitch and I am slapping the illness down and batting away symptoms like flies. Mostly though I am somewhere in the middle, flailing around a bit and getting through every day. And that is good enough. I give myself the chance every day of having some enjoyment, being emotionally available for those who need me and not giving in.
Now where is that toolbox......
I take my metaphorical strategy tool box with me wherever I go. It's filled with all sorts of quirky stuff that actually really helps if you deploy it when needed. Sometimes you have to find a quiet toilet in order to get to your toolbox, but essentially you can use it on the go. Let me share some of my toolbox with you.
1) Recognising unhelpful thinking styles
CBT techniques get you to challenge your thought processes such as black and white thinking, catastrophising, inappropriate mental filtering, over generalising, negative labelling and emotional reasoning. Yes I do all of these. Basically you have to practise listing reality and redirecting your brain to that. It stops you speculating and getting lost in the forest of your own ridiculous thoughts.
2) Sleep hygiene
Sleeping properly. At the same time each night, with no stimulation like TV or mobile phones, no reading, no caffeine, appropriate wind down like meditation and a nice warm bath, cool room, darkness and not getting overheated. If I don't sleep properly, my mood nose dives. Chronic fatigue is also a mania trigger. Insomnia for me is very bad news.
3) Exposure therapy techniques
This helps me to challenge hideous intrusive thoughts, helps me to move through any avoidance and desensitises me to the trigger. With an intrusive thought your head tells you it's really going to happen or you are really going to do it. So for example, the kids are walking along the path near a cliff that has a wall about 2 feet high. The drop on the other side is steep and rocky. They want to jump on and off it, push each other around and generally be a little unsafe. Intrusive thought head sees dead children, broken and covered in blood at the bottom of the cliff, which in my whole body sensation feels real. I start to hyperventilate, heart races, clammy hands, major panic sensations and mild hysteria. This can result in screeching, dragging children away from the edge physically, really over reacting and children feeling slightly confused about mental parent. Exposure response is to go with children, lay across the wall on our chests, look over the edge and experience weird tingly bum sensation of vertigo, discuss general safety and walk away. Let them do some jumping. I will breathe through it. I have also had to do the whole knives in the sink with wine glasses, drinking tea next to a bottle of bleach, flirting with the fabric softener and sharing with my husband that my head just told me to poo in a plastic bag and leave it in the glove compartment of the hire car. It is random and totally unhinged. Thankfully I don't act out on it! I know I'm bonkers.
4) Mindfulness
This helps to slow down and refocus the "Head traffic" that I get on a regular basis. It gives me a place to detach from the noise and keep it simple. I can step back, observe the thoughts and allow them to pass without engaging with them.
5) Doing something physical and/or challenging demotivation
When things are off balance, I can feel very demotivated. I have to force myself to do something, or try to do something, even if it's very simple. Walk, swim, do the washing up, cook, say yes when really you want to say no. This makes your endorphin's start swishing around a bit and makes you feel more uplifted and positive.
6) 12 step program
I could write about this for the rest of my life. Very simply, I cannot drink/use like other people. I accept this and on a 24 hour basis I do not use mind altering substances, I work on my behaviour, I am compassionate to myself and others, I trust that my higher power will guide me spiritually, I help others out when I can and I make a concerted effort to not be an arsehole.
7) Singing very loudly
Do I really need to explain this? I do this usually on my own in the kitchen when cooking and cleaning, or, in my car. This means I am alone and can pretend I am amazing at singing when quite clearly I am not! Really helps to channel my emotions.
8) Asking for a cuddle
Sometimes gentle physical contact and affection can make all the difference. It warms you, helps you to feel loved as well as held physically and emotionally.
9) Body scanning and mood/thought monitoring
This is really important for me in managing anxiety. Anxiety for me is a whole mind and body experience, and when I am in it, I need to anchor myself to a practical framework to help me scale myself down. So I check through what my body is doing as well as what my mind is trying to sell me at a particular time. Slow down the breathing, move to a quieter place to sit down, touch something tangible and mindfully feel it, reality check myself to reduce fear, what is real and what is fiction.
10) Humour
Humour is a God send and a life saver. My illness is life threatening and very serious. If I get too caught up in all of that I might as well give up. I cannot take myself too seriously and humourising my situation can make it feel more acceptable to me and others. And it is laughable some of the stuff that goes on in my head.
You know I have a choice as to how I live with my illness and I think from very early on I knew that I would have to work at being well. And I do most of the time. Sometimes things are too difficult and I seem unable to use anything to help me. I'm just in it and have to ride it out. Other times I am like SAS recovery bitch and I am slapping the illness down and batting away symptoms like flies. Mostly though I am somewhere in the middle, flailing around a bit and getting through every day. And that is good enough. I give myself the chance every day of having some enjoyment, being emotionally available for those who need me and not giving in.
Now where is that toolbox......
Wednesday, 12 October 2016
So where was I?
I was trying to return to work in a phased approach. I started this process at the end of January 2016 and had to take all of my owed annual leave, as well as planning how I would like to return to work; 25% one month then increasing this to 50%, 75% and then hopefully 100% of contracted hours. My psychiatrist warned me to take it slowly. Recovery in the early stages is precarious and you do feel delicate. Risk of relapse is high and being vigilant of symptoms, stress and fatigue is essential. Ideally you would like to be supported by someone who understands and cares about your well being. The trouble I had was that I was experiencing mixed messages from a variety of directions. My boss didn't speak to me for about 4 weeks. I think he'd been warned not to upset me, so in his wisdom, he avoided me like the plague. The verger wanted to know every detail of my life like a mother hen, and the Cathedral canon who was allocated to oversee me in a "Confidential support" role spoke to me on the phone infrequently but when I saw her face to face was a total God send.
To be honest, I don't think they had any idea of how to handle me. And I tried really hard to do everything right. Thing is you cannot legislate for other peoples unseen agendas, game playing and generally misogyny. I made the mistake of thinking that my fellow colleagues were all on the same page, both with me and each other. I was so far off the mark it's ridiculous. I am no good at living within chaos and under currents. It reminds me of living with my parents when I was 9. I know some people are really solid and can surf the waves and get their head above water. I am not that person and being mentally ill within all of that is a recipe for disaster.
I requested a meeting with my boss and some members of the parochial church council (PCC) to discuss my ideas and concerns about the job. I'd talked this through with wiser counsel, and they supported the idea. I called my boss to get some time slots arranged. This was the Thursday. The following Tuesday my boss told me he'd been to the arch deacon to discuss me and that they felt my meeting was a terrible idea, and that as I was "Failing" he felt that I should have a meeting with the PCC and my boss every week to discuss my work plan, outcomes, forward planning and issues. So me, 5 members of the Church, every Wednesday for 2 hours, had to meet. So there I am, working hard to get back to work slowly on medical recommendation, unsupported, and dealing with my fragile mental health and now I was to be subjected to weekly interrogations.
Light bulb moments. Chrystal clarity. Emancipation. In that first meeting, and what transpires as the only meeting we had, everything made sense. I was allowed to speak first. There is a God. What followed was both shocking and a relief. Turns out my boss had been manipulating the information of the PCC and telling me half truths and lies, and ignoring diocesan policy on supervision practice. Bless the PCC representative that day. He looked genuinely appalled. People can be naive and this includes me. Just because a person is ordained doesn't mean he is compassionate or Honest. Turns out he was self serving, deceitful, power hungry, willing to sacrifice everyone else in order to get his way and a chauvinist. He was also very good at presenting the face of pious submission to those higher up the ladder. I remember thinking if Jesus were to turn up, I wonder what he's make of it all. Now as a caveat, this is only my experience of this person. He may be amazing with other people, but with me he was a class A shitbag.
I prayed. I spoke with wise people. They talked at me! I went to my GP who signed me back off work. I reflected. I resigned. I had spent 4 precious months embattled and pretty much degraded. Enough was enough. The feeling of joyous relief when I popped my resignation note and keys in the post was sublime.
I am fully aware that the world does not have to bend to my will and my illness. The world does not have to constantly pander to my whims and needs or suffer as a result of my inability to show up to work. However, just because I have a mental illness doesn't mean that I am not capable. It doesn't mean I am stupid. It doesn't mean you can treat me unspeakably poorly. I do not have to expose myself to the abuse of others. I have learned so much from this experience. Mostly that my mental health is more important than ever. I cannot be a parent, wife, friend, daughter or sister in Christ if I am permanently ill. Also, that there are lots of people in the world who do not understand mental ill health, or even want to understand mental ill health. This probably won't change, and when I am around that I need to be really selective about my approach. I have to protect myself. I also have to remind myself that I have something to offer the world. That I am acceptable. That I am enough.
To be honest, I don't think they had any idea of how to handle me. And I tried really hard to do everything right. Thing is you cannot legislate for other peoples unseen agendas, game playing and generally misogyny. I made the mistake of thinking that my fellow colleagues were all on the same page, both with me and each other. I was so far off the mark it's ridiculous. I am no good at living within chaos and under currents. It reminds me of living with my parents when I was 9. I know some people are really solid and can surf the waves and get their head above water. I am not that person and being mentally ill within all of that is a recipe for disaster.
I requested a meeting with my boss and some members of the parochial church council (PCC) to discuss my ideas and concerns about the job. I'd talked this through with wiser counsel, and they supported the idea. I called my boss to get some time slots arranged. This was the Thursday. The following Tuesday my boss told me he'd been to the arch deacon to discuss me and that they felt my meeting was a terrible idea, and that as I was "Failing" he felt that I should have a meeting with the PCC and my boss every week to discuss my work plan, outcomes, forward planning and issues. So me, 5 members of the Church, every Wednesday for 2 hours, had to meet. So there I am, working hard to get back to work slowly on medical recommendation, unsupported, and dealing with my fragile mental health and now I was to be subjected to weekly interrogations.
Light bulb moments. Chrystal clarity. Emancipation. In that first meeting, and what transpires as the only meeting we had, everything made sense. I was allowed to speak first. There is a God. What followed was both shocking and a relief. Turns out my boss had been manipulating the information of the PCC and telling me half truths and lies, and ignoring diocesan policy on supervision practice. Bless the PCC representative that day. He looked genuinely appalled. People can be naive and this includes me. Just because a person is ordained doesn't mean he is compassionate or Honest. Turns out he was self serving, deceitful, power hungry, willing to sacrifice everyone else in order to get his way and a chauvinist. He was also very good at presenting the face of pious submission to those higher up the ladder. I remember thinking if Jesus were to turn up, I wonder what he's make of it all. Now as a caveat, this is only my experience of this person. He may be amazing with other people, but with me he was a class A shitbag.
I prayed. I spoke with wise people. They talked at me! I went to my GP who signed me back off work. I reflected. I resigned. I had spent 4 precious months embattled and pretty much degraded. Enough was enough. The feeling of joyous relief when I popped my resignation note and keys in the post was sublime.
I am fully aware that the world does not have to bend to my will and my illness. The world does not have to constantly pander to my whims and needs or suffer as a result of my inability to show up to work. However, just because I have a mental illness doesn't mean that I am not capable. It doesn't mean I am stupid. It doesn't mean you can treat me unspeakably poorly. I do not have to expose myself to the abuse of others. I have learned so much from this experience. Mostly that my mental health is more important than ever. I cannot be a parent, wife, friend, daughter or sister in Christ if I am permanently ill. Also, that there are lots of people in the world who do not understand mental ill health, or even want to understand mental ill health. This probably won't change, and when I am around that I need to be really selective about my approach. I have to protect myself. I also have to remind myself that I have something to offer the world. That I am acceptable. That I am enough.
Monday, 10 October 2016
Visibility - Happy Mental health day!
Today is the day when the world stands up and takes notice. The general populous reads articles, sees adverts and is exposed to the realities of mental ill health. It's meant to be a big mental health love in where everyone hopefully realises that you shouldn't be shit scared of a mentally ill person and it's not contagious. We are not all Michael Myers.
These things for me are a double edged sword. Embracing mental health tends to be like cuddling a hedgehog. It's got the soft, gooey, love me stuff on the inside, but there is a hell of a lot of prickly stuff to get through on the outside that can put you right off. "Life threatening illness" does not spring to people's mind when you talk about mental illness. The amount of times I have sat on the tube and someone has flung themselves under a carriage and people use words like selfish, attention seeker, and waste of space is shocking.
Demystifying mental health is a massive task. It is complex, odd and other worldly. You cannot see it or feel it, so it's really easy to think that someone is making it up or it's not that bad. What amazes me is that people will readily believe in talking to the dead, that tarot cards can predict your future, and that there is relevance in 6 magpies together on the lawn, but mention depression, hearing voices or anxiety and all hell breaks loose. There is some inexplicable hysteria about losing control of your mind, or the perceived fear of being slightly unhinged from reality. People of mental ill health have been demonised for years and the drip, drip, drip of paranoia leaks into your psyche and festers. We are not all murderers hiding in bushes. In 2010-11 635 homicides were recorded in England and Wales. 95% of those murders were committed by individuals who had not been diagnosed with a mental health problem. It's so easy to focus on the perceived weirdo, rather than accept that the other 95% who were doing the murdering were of, "Sound mind". Like your next door neighbour.
So we battle fear. We also battle impatience, dismissiveness, misunderstanding and get patronised and ridiculed quite a bit. I know that the mental health camp is not the only group of people getting this kind of deal. I suppose for now though it is my topic of choice so I am not casting aside other groups who experience similar alienation. It's just that this is my current experience. But in amongst all of that, I do want to be accepted, understood and embraced for the person that I am, with my illness as part of that wholeness. That means exposing myself to you, at the risk of being rejected or gossiped about or avoided. It's not like I'm choosing between two pairs of shoes now is it. Show the real me to you and possible have a nightmare experience. Hide myself in plain site and be living a half truth, colluding with the denial camp and suffering in silence. And the thing is my illness is a part of me, it's not the whole me. There is more going on than just intrusive thoughts, feeling suicidal every now and then or running around like a headless chicken.
Visibility. It's all about visibility. Drag the fears into the light and they wither and die. Just like pouring water on the wicked witch of the west. I have chosen to be visible. I have chosen to embrace my truth and put it all out there. But this isn't just for me. By taking that risk, other people see their truth and are able to feel just that little bit safer about sharing theirs with me or someone else. I have had the huge privilege of being able to listen to other peoples experience, advise them about where to go for help, laugh at the madness we share and generally be a person in solidarity. We can actually save each others lives by letting someone in and seeing who we really are, and bring hope in times of despair.
What might be frightening for you to understand, is a living horror for the person experiencing it. They will be so much more terrified than you and showing compassion and empathy is a cooling salve to someone who has experienced hostility and animosity.
Go gently and confront your fear. You may just save a life with a small act of love.
These things for me are a double edged sword. Embracing mental health tends to be like cuddling a hedgehog. It's got the soft, gooey, love me stuff on the inside, but there is a hell of a lot of prickly stuff to get through on the outside that can put you right off. "Life threatening illness" does not spring to people's mind when you talk about mental illness. The amount of times I have sat on the tube and someone has flung themselves under a carriage and people use words like selfish, attention seeker, and waste of space is shocking.
Demystifying mental health is a massive task. It is complex, odd and other worldly. You cannot see it or feel it, so it's really easy to think that someone is making it up or it's not that bad. What amazes me is that people will readily believe in talking to the dead, that tarot cards can predict your future, and that there is relevance in 6 magpies together on the lawn, but mention depression, hearing voices or anxiety and all hell breaks loose. There is some inexplicable hysteria about losing control of your mind, or the perceived fear of being slightly unhinged from reality. People of mental ill health have been demonised for years and the drip, drip, drip of paranoia leaks into your psyche and festers. We are not all murderers hiding in bushes. In 2010-11 635 homicides were recorded in England and Wales. 95% of those murders were committed by individuals who had not been diagnosed with a mental health problem. It's so easy to focus on the perceived weirdo, rather than accept that the other 95% who were doing the murdering were of, "Sound mind". Like your next door neighbour.
So we battle fear. We also battle impatience, dismissiveness, misunderstanding and get patronised and ridiculed quite a bit. I know that the mental health camp is not the only group of people getting this kind of deal. I suppose for now though it is my topic of choice so I am not casting aside other groups who experience similar alienation. It's just that this is my current experience. But in amongst all of that, I do want to be accepted, understood and embraced for the person that I am, with my illness as part of that wholeness. That means exposing myself to you, at the risk of being rejected or gossiped about or avoided. It's not like I'm choosing between two pairs of shoes now is it. Show the real me to you and possible have a nightmare experience. Hide myself in plain site and be living a half truth, colluding with the denial camp and suffering in silence. And the thing is my illness is a part of me, it's not the whole me. There is more going on than just intrusive thoughts, feeling suicidal every now and then or running around like a headless chicken.
Visibility. It's all about visibility. Drag the fears into the light and they wither and die. Just like pouring water on the wicked witch of the west. I have chosen to be visible. I have chosen to embrace my truth and put it all out there. But this isn't just for me. By taking that risk, other people see their truth and are able to feel just that little bit safer about sharing theirs with me or someone else. I have had the huge privilege of being able to listen to other peoples experience, advise them about where to go for help, laugh at the madness we share and generally be a person in solidarity. We can actually save each others lives by letting someone in and seeing who we really are, and bring hope in times of despair.
What might be frightening for you to understand, is a living horror for the person experiencing it. They will be so much more terrified than you and showing compassion and empathy is a cooling salve to someone who has experienced hostility and animosity.
Go gently and confront your fear. You may just save a life with a small act of love.
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