But are you REALLY there for me?

My life is full of people, same as most of you out there I imagine.

I have filtered down all of the people in my life using one criteria: 'Would I cry at your funeral?'

For those who fit in the 'no' bracket, it doesn't mean I'd be happy if they died, but it takes a lot for me to cry, so I may just feel sorrow for them.

Those you fit in the 'yes' bracket are those I consider of high importance in my life. Indeed, I would go as far as to say they mean more to me than I mean to me.

Sadly, when they are more important than yourself, you put yourself at the bottom of the list. You don't open up or ask for help, you don't want to burden them; you spend your time wishing, hoping, that they decide to ask you first. You pray that you won't have to get to that horrifically low place again, you want them to intervene before you hit the bottom...

But, for some reason, they never do. 

Then you ask them for help, and they make you feel like they're fed up of helping. They seem to think that all you do is ask for help. Ironically, I probably ask for help only 5-10% of the time I feel I need it. The other 90% of the time I am stuck in mental turmoil. All I want to do is ring and beg for support, but I can't because I know what the reaction will be... This makes me feel worse, meaning I need the help more than ever. 

Why can they never pick up the phone first? Why can they never call in and say 'Here's some food Laura'. Would it hurt to ring on their way home from work to see if I need anything from the shops?? A pint of milk, a loaf of bread?

All of these things would be infinitesimal to them, but to me would mean the world, that somebody could care enough to think of me without begging for their time. 

Maybe I should ask for help 100% of the time I need it, they'd soon realise just how much help I need. I'd feel even more of a failure though :(

I just cannot communicate this to people without seeming ungrateful. I try to write them letters and they don't read the entirety, get to the part where I explain that I need more, then fly off the handle.

The worst part is, I put everybody above myself, so I know that when people are feeling bad I am always trying to keep in touch and support them, so all the support is heading outwards and nothing coming in.

I know this is a pretty self-centred post, but I am trying to vent here rather than try to say something to someone I care for, as they always twist everything.

L x

 

Social Activity Meltdown!!!!!!!!

Sorry I've been missing for a couple of days... I was preparing to attend/attending/recovering from my friends wedding...

I spoke to my psychiatrist about social activities, namely, the fact that I am currently signed off work ill with 'stress-related illness' (for some reason my doctors don't like to put specifics on sick notes). The psych stated that social activities are therapeutic, and as long as I don't go out and act completely irresponsibly it was acceptable for me to attend. It was confirmed to me that the psychiatry team fully support me attending the wedding so long as I was well enough on the day; after all, I am off due to poorly controlled Bipolar Disorder, so some days I am more capable than others.

My psychiatrist said that attending the wedding was a good thing if it were possible for me to get out, so that was my decision made, if I could move from my couch, I was going.

The anxiety attack started 48 hours before the event...

• What if I am not going to be well enough to go?
• What if my clothes don't fit on the day, even though they do now?
• What if I have a panic attack mid ceremony and steal all the attention?
• What if I can't find anyone to fix my eyebrows?
• What if I can't find anyone to dye my hair?
• What if I look awful on the photos and ruin her photographs?
• What if I say something out of line? (I have no brain-to-mouth filter)
• What if I don't like the food and look ridiculous?
• What if I don't like the strangers at our table?
• What if people expect my to do things I feel uncomfortable with?

The list could continue but I reckon you get the point. 

Somehow, I dragged myself through to the day before the wedding, and managed to find a friend to fix my brows, and a sister to fix my hair... two things less on the worry list... NO, I managed to replace them with other worries... What about the weather, what if I get a headache, what if my heartburn kicks off...?

Finally the day arrived, and true to form I was awake STUPIDLY early. I like to have to rush to get ready as it gives me less time to focus upon my anxieties. I tried to go back asleep; NO, not happening. I tried to watch a film to distract me; NO, can't concentrate. I try to ignore the internal battle of 'I want to be just on time; versus 'You need to get ready, or you'll be late'. 

By 10am, my anxieties are sky high. I jump a mile when the postman posts parcels... (happily some sashes I ordered for my other friend's hen night). By 12pm I'm trying for the 10th time to do my hair. I can't make my hair look anything but rubbish, so I'm crying... Happily I haven't done my makeup yet... This is all before I've even got dressed to go...

I was finally good to go, AN HOUR EARLY... I can't deal with waiting around for an hour, I know, I'll go to mums...

Get to my mums, completely forget that there's a massive dog in residence (our family dog, I just forgot that a dog plus tights means potential ladders and lots of fluff)

Before you read the next bit please realise that I am grateful for everything I mention, but the gratitude is tainted by my stupid mental processes:

Then, at the eleventh hour, a change of plan. Instead of me gathering everybody in a taxi, my friend decided she was driving due to the weather. I know, most people would be grateful for saving a bit of cash, but to me it just threw my mental plan. I didn't even think to inform her that I was at mums instead of being at mine. 

Then, she made her own way to the church. I am a creature of habit and had a mental plan of how I would have driven. I resisted my instinct to butt in; she was the driver and I should be grateful for the lift. She parked what I considered to be MILES from the church. (I had the advantage of being familiar with the church, so I have no reason to complain really, and it wasn't that far, probably 400m.)

I battled my mental monologue and got to the church :) We were very early, but not the first there. We greeted the groom and found a space to wait. The ceremony was perfect, a lovely service (I got a bit upset by them using an unorthodox tune to 'All Things Bright and Beautiful, but I got over it), and I was able to access a cup of tea afterwards to take paracetamol for the brewing migraine. I knew straight away that it was a stress migraine, after all, I had had a 48 hour panic attack building up to this ceremony. 

Ceremony over, now to tackle the wedding breakfast on a table with strangers. Luckily, whether planned or otherwise, my friends sat either side of me shielding me from strangers, for which I was grateful. They also understood when I didn't speak for 20 minutes whilst I tried to get a handle on my aching head and waves of nausea. 

Feeling more in control and healthier, I enjoyed the speeches, cutting of the cake and laughing at 'Mr Westlife', the toastmaster who looked and sounded like Louis Walsh would stick him in a boyband. 

I then had to follow the preceding seven tables to visit the buffet. I DON'T really do buffets, you don't know who's been mauling your food, has there been flies on it, has anyone sneezed/coughed/sweated on it??

However, I was feeling both brave and incredibly hungry, so I decided to get a selection and see how it went. I got a curry, rice, chips, chicken stuff, pizza, wedges, sausage rolls... I got LOADS!!! and aside from the rogue peppers and courgettes in the curry, I ate everything!!!

I felt like I'd achieved. I felt like the day had taken a social upturn for me, I had coped...

Remember the migraine? Well it took the gap between wedding breakfast and the reception as its opportunity to swim back into my head with an enormous bang. 

I lasted until 9pm, and my mum got a mercy plea to pick me up.

I got home, puked, and slept for 12 hours. I thought that I felt better today, but I think I have used up my social battery. I went to my parents to collect my car and was tired within moments.

Right now I'm lying on the couch having been here for hours, typing this slowly to prove to myself that I can.

Did I make a fool of myself? NO
Did I survive? YES
Could I do it again, anytime? NO. I need some time to recover myself I think

In all, it was worth it, I got to witness the wedding of my beautiful friend and share a once in a lifetime day with her. Yes, I will be knackered for a week or more now, but I feel like, just for a day, I was living again.

Coping with the Ups and Downs

So... I'm bipolar... I should just get over it,  right,  we all have ups and downs...

Yes,  I know mood fluctuations are natural,  human, 'normal', but it depends on how wide the range they span is.

To me,  a 'high' day isn't a case of getting out of bed without snoozing,  smiling all day,  going for a jog and enjoying a healthy tea.  A high day for me involves making life altering decisions such as spending money I don't have,  deciding to return to uni to retrain without staring my first career,  and doing things that I would ordinarily consider outlandish...  Telling people exactly what I think about anything,  not caring if it offends anybody...

Conversely,  my 'lows',  they are horrific...  A low day for me is a day where I can't move from the sofa,  I wish I would just stop breathing and the thought that I have to live through the same again tomorrow is to much to bear...

I just don't know which end of the spectrum I'm going to be at each day...  On days when I'm high nothing matters,  I don't believe I'm ill,  I go out spending all my money,  and miss appointments...  The only small restriction I have is that anxiety can still intervene,  putting a barrier on my day... Low days I stress about having no money,  offending everyone and being a failure as a human...

My mood diary from the psych showed that I have 'OK' days less than 25% of the time,  25% ish high mood and 50% depressive mood...  So statistically I spend 25% of my life trying to fix myself,  and 75% ballsing everything up :(

I'm hoping that the bipolar diagnosis will open up a support framework to try to stabilise my moods,  maybe giving me a bigger proportion of time to fix my life???? 

sorry this is a bit of a ranty post, feeling a bit trapped today... 

Advocacy

Today I am thinking about advocacy within mental health. 

Not championing awareness of mental health, but actual advocacy, you know, support with financial management, support attending appointments, support getting through life essentially.

I am a 26 year old, single female living in Liverpool. I live near to my family, but not in the family home.

My parents, well they are there for me as much as they can be, but they have their own problems and those of my sister to deal with too. 

Besides my parents, society presumes that I can survive on my own.

Problems I have with independent survival:

• I struggle to speak on the phone (communication disorder, Aspergers)
• I get so stressed over aspects of life I avoid them (I avoid opening post, I am in massive debt and the stress makes me very ill, it can trigger a depressive phase)
• I struggle with waiting rooms (I avoided my GP for 18 months as I couldn't face the waiting room, making myself more ill in the process)
• I am not very capable completing forms (if they don't follow my train of thought or the questions are not completely relevant it sends me into meltdown)

These are just the 'tip of the iceberg' when it comes to problems. I am struggling with day to day existence, but there seems to be no system in place for support.

I feel like I fall outside all of the brackets; I can walk, so I don't need a carer, I can read and write, so I don't need a carer, I have full command over all four limbs, so I don't need a carer....

However, I neglect my personal hygiene, because of lack of motivation/other mental issues... I avoid dealing with my debts as they are too anxiety provoking... I struggle maintaining my house, I spend so long making lists of what to do that I don't do any of it, I can't touch dishes that have been left in the sink, I can't wear gloves due to textural issues... I lack motivation to cook, so either starve or binge (really good recovery for a bulimic don't you think?)

But these issues don't meet with the 'need for support'. I, of course, have the physical ability to turn on a tap to run a bath, so I don't qualify for support...

Why is my mental inability any less of a disability than a physical one. The end result is that neither myself or a physically incapable person would be able to achieve the end result, but the lack of willingness to support suggests that they think that I am choosing not to be able to do these things.

I intend to continue self-advocating to the best of my abilities, but I feel on the cusp of admitting defeat, turning up at the psychological hospital and requesting admission... It may be the only way to get some intense support.

Mental Health Support - the postcode lottery...

This week, my mission has been to try to find a charity offering support to fill in the (rather large) gaps in my care and support left by the NHS...

This, I thought, would make life a bit easier. I would be able to construct a support network around myself, and hopefully this would enable me to try to find a way forward, a way out of this deep, dark hole I find myself in.

The first thing I should point out is that there are literally thousands of charities based in the UK with an aim to supporting mental health issues. 'That's great', I thought, as surely with this many charities, I would surely find at least one suitable for me...

The things I decided that I may wish to seek assistance with are:

• Advocacy
• Emotional Support
• Financial Support

Eyes. Wide. Open

Firstly, within fifteen minutes of searching, something became immediately obvious... Charities CAN discriminate.

I suppose in realistic terms every charity has to have a strict criteria for who they support. I do understand that otherwise they would not last long at all, they would be doling out support and funds so quickly that they would run out of resources in days.

Let's start from the basics, I looked at what I consider to be the 'big' charities. I looked for charities who have support available in Merseyside. I found one, CALM. 

You'd think, well there you go, CALM is the one for you. But, you'd be wrong. CALM will only support men. I am outside their demographic, the search goes on...

** So far - gender goes against me **

I used a charity search to look for smaller, local charities. Surely, somewhere in here I must fit into somebody's criteria... After all, I have a variety of diagnoses and I am a human citizen of the area, right?

The next charity I came across seemed to suit me perfectly. A charity supporting people in my area who have a diagnosis of Bipolar disorder. Perfect!! No... Sadly I don't qualify as I am heterosexual :( and this charity works with people in the LGBT community.

** So far - gender and sexuality go against me **

But that's ok, for here is a charity with similar criteria, no mention of sexuality, and it says it's for females. BINGO!!! Oh wait, no, I am not in the specified Ethnic community...

** So far - gender, sexuality and race go against me **

By this point I am giving up hope, when suddenly I see it. A Liverpool based charity, supporting women with Mental Health disorders, by this point I nearly cried with joy... I clicked upon the link, the headquarters is based in Liverpool City Centre... Could this be the one??? Oh, no... Although it is based in Liverpool, it supports people from Knowsley and Sefton only!!!!!!!!

** That's it, I literally fit in nobody's criteria **

I should stress here, I have NO PROBLEM with charities cherry picking who they support at all, but I have a problem that this leaves people with all the same problems with NOBODY to help them :(

What next??

Do I use a family member's address, pretend I live in Knowsley?? Do I claim to be homosexual?? 

Or, do I raise awareness myself. I have started a twitter campaign, @EndingStigma, to raise awareness of the issues I, like many others, encounter daily. Along with this blog, I hope to go some way to make a difference.

One outcome has been decided already; once I am well enough I intend to either join a charity and bring them to my area, or start a charity of my own, after all, I can't be the only white, heterosexual, female scouser who needs access to this type of support, right??

Mental Health and Employment

Mental health in the workplace… 

need I say any more??? What a catastrophe it is!

I have been off work for three extended periods in the last three years. Each time has been due to a breakdown of my mental health. Occasionally, a physical health issue has cropped up whilst I’ve been off too, but on the whole it’s all about my messed up brain.

The first two times I was treated ambivalently. Work showed no interest in my health. They got in touch every time sick note was nearly due up asking ‘Are you returning to work this time or what?’ No hint of concern as to whether I was actually recovering, but just a concern that they were one body down when it came to planning the rota.

This changes when I am finally signed as fit to work. The first time I go in to see them to arrange my return to work it’s as though they’ve been very concerned about me. They state that they have a variety of strategies to help me.  This starts well (phased return to work, but using my holiday entitlement), but within days has fizzled away.

The epitome of support I received from my workplace was: They placed my job description in front of me and asked me to tick any criteria that I may struggle with in my job. This was then taken, filed and never spoken of again. A mention of occupational health was bandied about, but nothing constructive.

The cycle then started again; my batteries are recharged, I cope for a while. Then cracks appear; I can’t cope with the hours being worked, I can’t cope with customers moaning about trivial nonsense, I get anxious about speaking with customers,  I get anxious about even getting ready for work…

And now??

So, at the moment I am off work long term sick. Fortunately I now have a new manager who seems to be more interested in supporting me. He has been in touch regularly, just with a text asking ‘Are you ok, feeling any better, any news from the psychiatrist?’ etc.

Ok, I know that he is getting pressure from above, ‘Make sure you find out when she is returning to work.’ ‘Get her to come in for a progress meeting’ but I genuinely believe that he has my best interests, if not at heart, then in consideration.

When I went for the progress meeting, it was illuminating. Every question on the form was practically unanswerable in regards to mental health. Some examples are:

‘When will you be well enough to return to work?’

Well, if I had a broken leg, I could probably give a timescale. 

If I had pneumonia I could probably give you an idea based upon the antibiotics I have left. 

With mental health, how am I supposed to have an idea for myself, never mind one to document officially??

• Each time I see my psychiatrist my medicine is changed. 
• Each time my medicine is changed it takes 4-6 weeks to know what the difference is going to be. 
• Each time a difference is made, it then needs assessing as to how this impacts upon my life.

Also, I have Bipolar disorder. Some days I am so high that I feel so well, I can’t possibly be ill. On a day like that I am more than well enough to work, although I may take some risks. However the next day I could be incapable of getting out of bed. Whilst my mood is so wildly fluctuating, how am I supposed to know when I’ll be well enough to commit to working.

What can we do to help?

Well, you can stop making me feel bad for being unable to sell insurance to every customer. I work in an area where most people don’t insure their car, which is a legal requirement. If they won’t pay compulsory car insurance, how am I to convince them to pay optional insurance on a mobile phone?? And when I don’t manage to pull off a miracle, you threaten my job.

You can make it so my job is that, a job. A PART TIME RETAIL JOB. I am sick to death of taking work home with me; stress over missing targets haunts my sleep. In a career such as teaching or medicine, you’d expect to take the job home with you… selling mobile phones part time, well frankly that should be left at the door.

You can stop expecting that although my contract is 16 hours, I will work 7 day weeks, opening to closing.

You can make reasonable adjustments to the workplace. In our south-facing, glass walled shop you can apply window tints, so as I face a chance of making it through the day without acquiring a migraine. You can provide maintenance to sort out the kitchen. It is dirty as hell, full of insect life and has a toilet in the middle of it, and provokes my anxiety to the point where I barely eat and drink (excellent for a recovering bulimic, providing an excuse to avoid eating).

You can reconsider your actions after my last absence. I was off with a mental breakdown and midway through had to have a lifesaving operation leaving me without most of my abdomen. You decided that this was worthy of a ‘first written warning’ of absence. This is discrimination at its highest level. Discipline those off sporadically with a hangover/convenient headache by all means, but when someone is genuinely ill don’t treat them like a naughty employee who should have been in work regardless of the situation.

You can fulfil the promise made after my first absence, and actually get me help from occupational health. Maybe they can facilitate a way for me to work. Otherwise, I can sense that I will be made unemployed, and how is a girl with a sickness record like mine ever going to find employment again.

Stop asking ‘So?? When are you coming back to work???’. Take it as given that once I’m well enough I shall let you know. 

So what next??

Each and every person you employ comes with a 25% risk of becoming a mental health sufferer. In today's society where there is ever increasing awareness of mental health issues, surely this should be travelling up the hierarchy. 

Mental Health issues shouldn't make you unemployable. However, the lack of support from my employer has contributed to my extended and recurrent leave of absence. I have a degree. At present I am too ill to use this degree. However, I am trying my hardest to continue to be in employment.

The sad thing is, it's likely to be a case of leaving employment to spend time making me better. Why should a part time retail job contribute to making my health worse??? I don't get paid enough for that.....

Aspergers and Mental Health

From speaking in discussion groups and forums with other Aspies, two things have become clear:

1. 1.   There seems to be a high prevalence of Mental Health (MH) disorders amongst Aspies.
2. 2.   People ignore MH issues in Aspie's, as though it is impossible to have both.

First thing to note is, Asperger Syndrome (AS) is a neurobiological disorder. It is NOT a mental health disorder. Some say it is a faulty wiring of the brain, although I prefer to think of it as being different wiring; it's not faulty, it's alternative!!

This alternative wiring is the source of much debate. Can somebody with a difference in their brain possibly suffer an illness of the ‘normal’ brain?

The equivalent to this question is ‘How can both a white person and a black person have eczema?’… ie It is a LUDICROUS question. The make-up of skin is the same no matter the colour, it just contains more or less melanin. Similarly, all human brains are the same; just some have differences in make-up.

Recent research shows that there is a visible difference in the brain of someone suffering from certain mental issues, such as depression. In certain types of depression the hypothalamus in the brain is undersized. The research suggests that this is self-fuelling. The brain produces less ‘happy hormone’ (both dopamine and serotonin count here) which causes the part of the brain which produces them (the hypothalamus) to shrink, thus reducing the person’s ability to create these happy chemicals.

How could this link to an Autism Spectrum Disorder?

AS causes a wide range of issues, from social difficulties to sensory processing difficulties. It does not itself cause a dopamine or seratonin deficiency. 

However, the difficulties brought about by, for example, social isolation can act as catalysts for MH difficulties. 

Imagine, you're out with people you consider friends, they are all having fun, having many conversations over each other, and laughing at private jokes.

As an Aspie, you're wanting to have fun too, but you're overwhelmed by the new member of the group; Who are they? Why do we know them? Am I allowed to speak to them? Do they like me? 

You cannot keep up with the conversations that are happening... In fact, there's that much noise that you cannot tell one from the other, so you're smiling at people completely unaware of what they are saying... Is a smile appropriate? What if they're explaining how a family member died?? Have they been cheated on by their partner? Are they mocking me and I'm joining in the laughter?  You don't understand what they're laughing about; Why is that funny?? They keep saying spoon?? What's so funny about a piece of cutlery?

In short, instead of having a relaxing time socialising, you spend your time stressing out. You feel like you're there but in a bubble. You can see everything going on, they can see you, but you have a barrier, you can't quite engage with the group. The longer this continues the more it compounds itself. This over time can develop into a stress related illness, and furthermore the lack of stimulation of serotonin and dopamine can cause clinical depression... So tell me again how Aspie's cannot get a mental health problem???

There are other mental illnesses that this social stress can cause… for example, Anxiety… Wouldn’t you be anxious if you didn’t understand any of the social cues around you??

In short, whilst AS can make you more susceptible to mental illness, it does not cause it, and it is not to be written off as ‘inevitable’. It is as treatable as in a neurotypical person. Please remember this.