Seven Days In

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So we’re now seven days in to 2014 and I have spent most of the time in bed.

I’ve not even been able to spend the time in bed productively – setting up my website or creating lesson plans as I had intended to do with the bad days this year. I’m not sure of the cause behind this latest POTS flare, whether it’s the series of weather fronts that have been battering the UK day after day, my body recovering from Christmas, whether I have an infection or a combination of them all. Whatever the cause it’s hitting me hard; every day this year I have either woken up with, or developed a migraine, no amount of essential oils, sumatriptan or heat has soothed them and I’ve been sleeping for about 12 hours each night in an attempt to get my body back on track.

In addition to the migraines I’ve been dealing with syncope, nausea and a general ache through my whole body, which feels like the pain is radiating from my skin into my bones.

With this in mind I wanted to highlight how isolating chronic illnesses are. Just based on my current symptoms: the body aches mean that I can’t stand being touched, so I am constantly frustrating my other half, who struggles seeing me in pain and understandably just wants to hug me to make me feel better. The migraines are making me irritable with anyone who dares to try  communicating with me and limits my time on social media. With fainting when vertical for more than five minutes leaving the flat just isn’t an option. Previously the isolation has fed my anxiety and depression and just made matters worse.

I know I’m in a more fortunate position than a lot of people, and bearing this in mind I am determined to make 2014 different.

It has got off to a bad start, however, tomorrow I am joining some of my friends in the 100 Happy Days project and will find something to be happy about, even if it is just something from my bed!

2013 taught me that no matter what I think society thinks*, it’s ok for me to rest if I am ill and hopefully in 2014 I can not only keep this up but also learn to accept POTS and myself.

I will talk more about isolation, acceptance and 100 Happy Days soon, but for now I need to switch off the computer and rest.

 

 

* I will write about this soon.

Searching for Silver Linings

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I hadn’t realised how long it was since I last wrote something, so in the spirit of New Years resolutions I aim to write more regularly again (POTS willing).

I know there have been hundreds of reviews of 2013 and they are all far more interesting than mine (and more timely) but I feel the need to round up 2013 so I can move into 2014 with a fresh outlook and realising I have made achievements this year, despite the setbacks.

In the theme of closing the door to 2013, I returned to my old place of work for the first time in 17 months (since I had my breakdown) on the 30th December. Yes, I was forced to resign in February so I didn’t go back to my exact work place, more the building. I still ran the risk of running into a former colleague, or worse still my manager. I also tested my anxiety facing the crowds that I knew would be there. Knowing I survived, despite still feeling residual anxiety five hours later means I can try to move in to 2014 without the restriction of saying to people I can’t meet them there.

Rather than focussing on the negatives I am looking for the positives or silver linings in five of the events that have occurred within my year.

My Grandma died. I’ve just spent ten minutes looking at those three words. Death isn’t new to me but this hit me hard. She became ill and was hospitalised just before I had my breakdown and had a horrible final eight months of life, so by the time she died, she was ready. I found it easier to deal with at the time than I am now. I was relieved that she was no longer in pain, she wasn’t living as we know it and didn’t want to live any more. Obviously there is a silver lining in her being pain free, however, I’d clearly much rather she was alive and pain free. So the main silver lining I gained from this was the fact I realised how supportive my friends are and how they were there for me throughout her illness and time in hospital, and were considerate and kind throughout the whole year as I faced her birthday and Christmas without her.

I began taking midodrine for Postural Orthostatic Tachycardia Syndrome. Throughout the whole process of becoming more and more ill, and finally discovering I had POTS I felt like I had lost all control. It was tiring having to explain to doctor after doctor what my symptoms were and how drinking more water and eating salty foods was doing nothing. I am grateful that I have been referred to a cardiac specialist who knows about POTS and although I have only met his registrars I feel like I am some how taking control of my illness.

I finished CBT and started and finished Schema Therapy. Therapy was hard. Both times. But when I started CBT in December 2012 I couldn’t leave the flat on my own, at all. I was scared of any form of communication. I had alienated myself from the majority of people I know (had it not been for a few amazing individuals who refused to give up on me I would have lost everyone I think). Being given CBT and schema therapy are huge silver linings and I am incredibly lucky to have been given the support I have, especially when I hear of people two years down the line still waiting for any form of talking therapy. I also made four amazing new friends from schema therapy who are a constant source of support.

I started seeing a new psychiatrist. I hadn’t seen one since being at University (it feels like a life time ago), but I had been changed from first line medication to first line medication by my GP, who as understanding as he is, admits he is not as knowledgeable as psychiatrists, nor is he allowed to prescribe what they can. My psychiatrist is lovely. She had thought about things I hadn’t even considered. She is patient and helpful and listens. I have been very lucky with the care I have been given so far. I am by no means over the mountain of mental illness but I like to think I’ve been given some pretty decent equipment to help me.

I resigned. I loved the job I had when I had my breakdown. I loved working with people, helping them, listening to them and seeing people develop from the person who had been recruited, etc. but the environment I worked in was toxic. Anyone with a chronic illness or disability will know how hard it is to work full time in any circumstance but when the environment you work in is unsupportive of that (despite their claims otherwise) it makes it all the more difficult. I won’t go in to the details but I was faced with two possibilities – resign or be dismissed for ill health. I chose the former, hoping that my health would take a change of fortune and I would be able to work again in the near future. This has not been the case.; however, in leaving work I have been able to think about what I’d love to do and put a plan in to action.

2013 taught me that there are some amazing people out there and I feel very lucky to have met or corresponded with them. I have found incredible support through Twitter. I am so grateful to all the people I interact with (be it on or offline) and hopefully never take it for granted, without you I would not be writing this today.

I fully expect 2014 to be hard: I turn 30, I hope to set up my business properly, start work again and write regularly; not to mention whatever the fates decide to throw at me this year, but I know I have support and that somehow makes any event seem more manageable and will collect silver linings along my journey.

Mental Health Education (TW sh & sui)

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This morning on Twitter the fabulous TraceyPallett (who tweets as @ehohsaysyes) raised the topic of when, and how mental health or well-being should be taught. [Update: Tracey has since written a post collating the information from this morning, the importance of education and what it could mean to the future].

Having been doing quite a lot of regression work in therapy the thoughts of school days have been in my mind recently and I feel it is important to share a particularly triggering incident within a class. There of course were many but this one relates directly to mental health education.

The school had PSHE lessons each term in each year, however, mental health/well-being, to my recollection, was never covered. I went to an independent girls’ school so it was a highly pressurised environment. When I was in my first year of senior school a friend’s sister killed herself whilst my friend and her parents were at parents’ evening. Although this tragic event was mentioned in assembly there were no follow up classes or discussions about it.

The first and only time there was any mention of mental illness was during an optional general studies class in sixth form. I can’t remember how but the discussion turned to suicide and self harm.

By this point I had been self harming for about a year and had tried to kill myself once. The school had been made aware of this via my parents, my teachers were all informed.

The class was being led by one of the psychology teachers who was fairly new to the school. She spoke about “committing suicide” and used all the other incredibly negative terminology associated with it. The class as a whole spoke   of people who had ‘tried hanging themselves but when found looked as if they’d tried to stop themselves’, how they ‘couldn’t understand self harm’, ‘why anyone would do it’, how ‘they were selfish and stupid for not knowing things would be better tomorrow’. I was lost for words, disturbed that the whole class bar myself and my friend (who by this point was holding me to stop my shaking and scratching at my cuts) could be so ignorant especially after what had happened earlier in our school life. The fact that the teacher just agreed with the class made me feel more worthless and stupid than I already did.

I wasn’t brave enough back then to stand up and face those people (a lot of whom had bullied me through the years) and say what it really felt like to be in that situation where life is just empty and the only thing tomorrow brings is more despair.

The only other education offered about mental health or well being was what EDs did to your body, basically it was a biology lesson. This of course was not practical help either. I was just one of many in the school with an ED. This was mentioned in Year 11 so by that point the psychological factors behind our EDs were well formed. However, none of this was explained, nor was there any advice on recovery. The whole hour felt like a shaming exercise and to me just something else I failed at.

In general the teachers were ill equipped to handle mental health issues. The school had a psychologist and the teachers who didn’t understand kept trying to refer me to her, however, as my mother had taught her daughter and I knew things about the psychologist which did not sit right with me I felt I could not trust her. I explained this to the teachers who told me I was paranoid, she was impartial and to just forget the previous knowledge of her.

I was lucky to one teacher and the school nurse who both seemed to understand mental health who I could turn to and tell them how I felt.

My experience with school makes me believe that mental well being should be taught from infant school as this is where a lot of experiences can begin with bullying for example. I know that in a lot of PSHE (or equivalent) classes children are already taught that bullying is wrong, about family relationships (for example divorcing parents) and exam pressures. However, to link these to keeping mentally well would be far more beneficial. For example children learning that being bullied is not their fault rather than just being told not to do it.

As the children progress through school more in depth mental health education can be introduced to cover aspects such as low self esteem, abandonment, defectiveness, failure to achieve, abuse. The list is endless.

To have teachers trained in mental health and well being would also be helpful in giving them understanding of what their students are going through and in this way offer more support to them. I found my lecturers at Uni to be far more accommodating and understanding.

I feel like I may have let future generations at the school down by not voicing my opinion on that day and hope no one else suffered through that awkward lesson as I did.

TW self harm Schema: Punitiveness

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I’m really struggling not to go back and update my Unrelenting Standards posts but I still haven’t despite realising things I wanted to add to it, so I will mark that as a small victory before I talk about the punitiveness schema.

I have decided to write about this schema as I am feeling particularly low and have a desperate urge to self harm. I have not been left alone all day as my boyfriend and parents are well aware of how I feel.

Young’s definition of the punitiveness schema is:

The belief that people should be harshly punished for making mistakes.  Involves the tendency to be angry, intolerant,  punitive, and impatient with those people (including oneself) who do not meet one’s expectations or standards.  Usually includes difficulty forgiving mistakes in oneself or others, because of a reluctance to consider extenuating circumstances, allow for human imperfection, or empathize with feelings.”
The above purely applies to me, not to anyone else making mistakes. I have only ever taken any anger I have out on myself. As you can probably tell this schema closely relates to the two schemas I have already discussed (defectiveness and unrelenting standards) as I feel that if I cannot meet the standards I set myself I must be punished and also punished for being defective in general. It is often confusing as I feel that I deserve this horrible feeling and the symptoms of POTS because I am not perfect and cannot be the perfect daughter, girlfriend, friend. I deserve the pain and if I’m not feeling enough pain I need to cause myself more.
I would say I have a higher level of patience for others than most do, I am incredibly forgiving and tolerant of others and always look for the positive in people, no matter what they have done. As mentioned in my unrelenting standards post I do not give anyone else the high standards I set myself and will focus purely on the positive aspects of their personality or successes.
I can never forgive myself for any mistakes I have made in my life. I am haunted by all my mistakes, I can remember each and every one in detail and it replays and replays. If I lose something or something breaks or a voucher expires without me using it it never leaves me. It adds to my feelings as a failure, a let down, stupid. I can’t forgive myself. I shouldn’t forgive myself. If I think how I’d feel if another person had done any of that I’d of course forgive them, they are completely trivial matters, but to me I feel as if I truly betrayed people. I am not allowed to make mistakes. I am so imperfect, I am so flawed, I am so defective.
This weekend I have felt a dreadful sense of guilt as I am fortunate to have a wonderful father when a lot of people don’t. I have done nothing to deserve such a good father when others are incredibly wonderful people but have missed out on the love, care, humour, intelligence and support a good father provides. I therefore sensed the need to punish myself as it brought home the realisation that I was getting something good when others weren’t and I had done nothing to be entitled to this. I was also feeling incredibly low, my POTS was bad and I had menstrual cramps so generally felt rough. I therefore couldn’t help with organising Father’s Day to the extent that I wanted to. This needed to be punished. I couldn’t afford a decent present for my dad so my mum gave me some chocolates to give him. This also needed to be punished.
There have been other factors this week where things have gone wrong when I have had good intentions and this has become something that has kept ticking over in my brain, as I cannot fix it I need to be punished for it. I feel that by keeping myself thinking of it is a form of punishment as I feel the pain of it, however, the pain I feel does not make up for the pain others feel so I am at a loss of how to punish myself further.
I know it’s not a new feeling I began self harming as a teenager, even before that I recall walking through the city in heels on my way to meet friends and the balls of my feet were burning and thinking “I deserve this pain”.
Today, I want to self harm, however, doing this, if my boyfriend or mum found out would hurt them so I am stuck.
For now I will just keep thinking the fact I feel the pain that I feel and these thoughts in my head are a form of punishment along with the symptoms and pain from POTS and EDS. It certainly explains things to me that can’t otherwise be explained.
I’m sorry that this post doesn’t flow well, I didn’t realise how strong this schema was for me until I began writing. Hopefully I’ll be able to work through all the schemas on here soon and a pattern will develop that shows how they are all intrinsically linked.

Schema: Unrelenting Standards

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I bring you my post on unrelenting standards after an incredibly draining therapy session, which included regression to an issue that helped form some of my schemas and a couple of mind boggling hours on Twitter so am tired, confused, sad and have a stinker of a headache.

I feel this blog is appropriate and needs to be written though as more and more frequently I have noticed other people with the unrelenting standards schema. Young defines unrelenting standards as:

“The underlying belief that one must strive to meet very high internalized standards of behavior and performance, usually to avoid criticism. Typically results in feelings of pressure or difficulty slowing down; and in hypercriticalness toward oneself and others.  Must involve significant impairment in:  pleasure, relaxation, health, self-esteem, sense of accomplishment, or satisfying relationships.

     Unrelenting standards typically present as:  (a) perfectionism, inordinate attention to detail, or an underestimate of how good one’s own performance is relative to the norm;  (b) rigid rules and “shoulds” in many areas of life, including unrealistically high moral, ethical, cultural, or religious precepts; or (c) preoccupation with time and efficiency, so that more can be accomplished.”
A lot of people thrive on this perfectionism and it keeps them going. Up until I broke down I put 100% of my attention and ability into everything I did, this obviously wore me out and made my POTS worse, I’d envitably have to cancel engagements or take time off work, which then activated my failure to achieve schema.
Constantly comparing everything about myself to the best in those situations (the most intelligent, the most beautiful, the most successful, etc) left me feeling like a failure, yet I still had these unrelenting standards driving me to make myself the best at everything. What I refused to recognise was that nobody is the best at everything, some people may seem to be perfect but I’m now trying to convince myself that there may be one thing they might not be able to do so well.
Please don’t misinterpret me, I don’t want others to question their own abilities and I definitely don’t want to knock anyone down or hunt for flaws, I just need to recognise that just because I’m not as pretty/clever/funny/settled/rich/happy as “Ann” doesn’t mean that I have not achieved good things in my life.
As part of my CBT my therapist surveyed people on my behalf to ask if it is possible to work at 100% all the time in every aspect of your life. The answer was a resounding ‘no’. Some understood where I was coming from, others just didn’t see it as necessary but they all had the same answer in common that it just plain isn’t reasonable. I know I wouldn’t ask it from others, so why is it fair to ask it of myself?
This is where the rigid rules of “I should…” guided my life, and still do to some extent, however, I am more aware of it now and get people I love to question me when I say these things. Sometimes in a response to a question asking why I have to do something perfectly, all I would be able to say is “I should”, because that is the rule I had given myself and it had become automatic rather than a reasoned thought.
I may add to this at a later date when I am feeling more with it, but in an attempt to break my behaviour associated with my unrelenting standards I’m going to post this without proof reading it ten times (yes, I would really do this, work would take forever), without being 100% happy with it and knowing that I have missed out some important parts (which are currently swimming about just out of reach in the mess that is my brain).

TW stigma My name is Jemma and I have a personality disorder

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I’m standing up. I’m declaring I have a personality disorder. I also have general anxiety disorder and bipolar. I have some physical health problems too, but apparently they are less likely to make me a murderer, or so the recent article by Deborah Orr would have people believe. I refuse to link to it as I think the fewer people who read her offensive, spiteful words the better.

It has taken me a while after first reading her article to write this as I needed to step away from the computer, in the meantime the fantastic Louise Pennington has written ‘Ignoring the Obvious to Perpetuate Myths about Violence’  and I thank her for doing this so quickly.

Similarly to Louise I’m not sure where to start. Even after taking over an hour away to compose myself, my feelings have been triggered so deeply that it is impossible for me to address this in a calm, logical manner, however, I know I have to otherwise I’m playing right into the hands of Orr and her cronies.

I was first diagnosed as having a mental illness and began treatment when I was 17, however, I know that I have had it for much longer. I am approaching my 29th birthday and I can say with no shadow of a doubt that I have never been violent to another being. I apologise and feel deep regret when I end up killing mosquitos who are biting me, I used force but not violence when I was being sexually assaulted, I was vegetarian for over five years as I thought the animals had more of a right to life than I did, I went fencing and was told I would be a great fencer if only I was a bit more aggressive but I was terrified of hurting my opponent. The only person I have ever attacked is myself.

So with nearly 12 years of meeting people with mental illnesses under my belt I can honestly say that I have only ever met one man who had a mental illness and was violent and have met a lot more men who aren’t mentally ill that are violent.

Yes, the averages may say that there are fewer people with mental illnesses than those without so I am bound to have met more violent men without a mental health issue but this has not been representative of my life. As it has dominated my life a lot of people I socialise with have, or have had, experience of mental illness.

I have only met one violent woman. She was violent due to acts of violence perpertrated against her. She knew it was wrong but didn’t know how else to control what she felt as this was all she knew.

I’m not even sure it’s the article that bothers me so much as her continuation to defend her words on Twitter. I will not post the screen shots of what she said as they were actually so discriminatory and triggering that all the hard work I have put in to my recovery was wiped out, I can’t even revisit her feed myself. It’s not fair to share my feelings with you as I am dealing with them but really must thank the wonderful Twitter friends that I have as well as the amazing techniques I have been taught over the years for preventing me from going one step too far.

Orr ignores all statistics.

No one is saying all men commit violent crimes but the fact that more men than women commit violent crimes cannot be denied.

No one is saying people with mental illness don’t commit crimes but the fact is people with mental illness are more likely to be the victims of crime.

I’m sorry I’m not providing the stats but I am emotionally drained and can’t remember them off the top of my head, nor do I have the energy to look them up.

I understand people wanting to understand why people commit crimes, I feel the same. I really wonder why they do it, but people do not kill because they have a personality disorder.

Orr clearly shows her underlying bias as she keeps refering to TV dramas where women solve crimes. Maybe Orr needs to spend some time with the police to see that in fact there are female detectives! For too long have male detectives dominated our screens so it’s nice to see this finally being redressed. Women aren’t just the handy sidekick or used as bait for serial killers. In fact I think my godsisters who are both detectives would love to have a sit down with Orr and tell her a few home truths. Whatever Orr’s issues are with other females she really needs to address these in a more positive, productive way than victimising individuals with mental illnesses.

It is people like Orr who have made me fear telling the world about my mental health. Slowly I let people know about being depressed, then some of my anxiety issues and with the support of charities and the Twitter MH community I have shared my actual diagnosis. Today’s events made me regret all this and the temptation to just erase my life was overwhelming. But no, I don’t want anyone else to have to go through this. I am NOT a bad person. Orr, you don’t know me. You clearly don’t know anyone with a personality disorder, or if you do they have hidden it from you due to your disgusting prejudice (and you’d probably be surprised at just how lovely they are).

I am standing up saying I HAVE A PERSONALITY DISORDER and I AM NOT A BAD PERSON.

J x

For Emily

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So yesterday I made a promise that if my friend blogged things that made her smile I would do the same. Within 10 minutes hers went up, shortly followed by comments from another friend of their favourite things. So here are a few of my favourite things…

1) Hugs/cuddles/snuggles.

2) Hot water, be it for a bath, shower, swimming or a good cup of green tea.

3) Baking.

4) Clean sheets.

5) New socks.

6) Getting into bed.

7) The smell of newborn babies.

8) Clean laundry.

9) Puppies.

10) Monkeys and monkey related paraphernalia.

11) Books, piles of books, new and old, the smell, the anticipation.

12) Puns and word play.

13) The smell of summer rain.

14) Family and friends old and new, real life and Twitter.

15) Notebooks to scribble in.

16) Road trips.

17) Desiderata.

18) Feminism.

19) Picnics.

20) Post and parcels.

21) Someone washing my hair.

22) Disney (I know it’s not PC or feminist but DisneyWorld has some of my happiest memories and some of the films make me happy).

23) Bakeware.

24) Funky stationery.

25) Music that suits the situation.

26) People watching.

27) Mismatching chintzy crockery for afternoon tea.

28) Sitting outside gazing at the stars.

29) The excited feeling when you’re falling in love or about to see the person you love.

30) Good deeds and random acts of kindness.

J x

 

 

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