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.

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

 

 

Twitter – the best & worst of humanity in one handy site

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My fabulous friend Emily wrote an excellent piece about Twitter the other day “How do I love thee?…” it is a lovely, thought-provoking piece about the wonders of Twitter (and I’m not just saying that because I’m mentioned in it).

Twitter has really helped me keep sane over the past eight months or so after I abandoned Facebook realising that it was making my depression worse and worse and that, no offense to anyone I know, but a lot of the stuff on there I just didn’t care about (although anyone I know reading this I care about what you say), nor could I understand people requesting to be my “friend” when they spent the majority of my school years sneering at me (and that’s when they were being nice).

So I was delighted to find this amazing community of people like me who suffer from: chronic pain, POTS, EDS, migraines, dysautonomia, depression, anxiety, mental health issues to name but a few of the things crippling me in my day-to-day life, who support me through my darkest days and who I can be there for too. I can put my efforts into trying to help them too, if I can make just one person feel a little bit better about their day then that means the world to me.

There of course are my other passions that are addressed on Twitter where I have found a wealth of writers, publishers, readers (#UKBookTwits, set up by the aforementioned Emily being a key element of this), bakers, crusaders, campaigners, feminists, kickstarters, music lovers, etc and if everyone just realised that Twitter has such an amazing force for good then the world would be a much happier place.

I was already planning on writing this blog before the tragedy that occurred during the Boston Marathon yesterday but this again showed the force and wonder of Twitter; an outpouring of solidarity and grief as the world watched and people tried to share information.

Since then there have been many blogs written regarding Twitter’s usefulness (or not) during and after this incident. A lot of well-meaning people have been criticised for over sharing information which turned out not to be true, but that’s what happens, people want to help, the jungle drums start, they trust others in these dark situations, as who would take advantage when people are reported to have died? Well a few it would seem, like fake charities being set up within seconds, showing just how depraved some human beings can be. People have also been criticised for not commenting on the bombings that happened in Iraq earlier in the day, but people have become desensitised due to tragically seeing it on the news day in day out. As awful as it sounds, to paraphrase one Twitter writer, we come to expect bombings and death in countries where there is war, not during a sporting event in a country that is not currently being targeted in war.

Every day we hear another tragedy, be it an earthquake, a car accident, a death of someone famous. As Dave Gorman has blogged it is impossible for us to grieve over each and every one. It’s hard to comment on death as everyone handles it differently; some believe everyone deserves respect and others don’t. This again then brings me back to Twitter where everyone must be aware of how it is being used during the past week in respect to Thatcher. I’m not going to comment any further on this and don’t care what people say about me because of it but I don’t want to get drawn in to any conversation which becomes a drama due to some trivial misunderstanding with people drawing conclusions that weren’t there to begin with. All I’ll say is that until you live in someone’s shoes you can never fully understand them, sure you can empatise or be shocked at behaviour but we never really know what is going on for them.

Not only have there been arguments regarding whether Thatcher was divisive of not (yes I have deliberately chosen that particular argument as it is just too funny) but also there has been so much bullying on Twitter recently, some will again argue that it’s not bullying but as a victim of bullying I have to say if someone feels bullied there is bullying going on. Although hopefully I won’t get crucified for my understanding of a situation as this has been a fraught topic recently.

I won’t name names or expressly write about them, as again with the way things have been recently I don’t want it blown out of proportion when all I want to do is help people understand that Twitter can be used in such a kind, supportive way, if that’s what people choose. But I guess life will always have those looking for an argument or finding arguments in places where there weren’t any and one faction (for want of a better word) will argue with another. Why? When I’ve just written about death and war, isn’t there enough hatred out there? It makes me laugh when people write in their bio that they are angry – do something productive with it, turn into passion, see a doctor, anger is NOT healthy or something to be proud of it anger and hatred destroys lives – think Star Wars.

I couldn’t keep quiet at one point and had to say something within one situation as I felt that I must be missing the point somewhere, but no, it just turns out that some people are mean and haven’t got past the name calling, childish behaviour that should have been left in the playground all those years ago.

So this was all going on in my head yesterday, as well as having had regression during therapy which took me back to the start of when I began to develop my schemas around defectiveness, failure & lack of self worth. But I think I should save all that for another day. So it’s no wonder that today I feel like I’ve been run over. My legs ache, my head is pounding, my neck, shoulders and back feel like they are broken. My resting heart rate has been 96bpm at its best and that’s with my lying in bed all day.

Call me naive, call me idealistic but I’m sticking with Twitter because of the good that it brings and can only hope that one day nastiness, bitterness and hatred will all go away.

Until it does I will continue to try to bring some light, love & kindness into the lives of those I follow.

Jx

100 Years of Books

“How many a man has dated a new era in his life from the reading of a book.” Henry David Thoreau

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My journey, my passions, LGBT rights, feminism and mental health understanding. Also disability rights too

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Just What I Was Thinking.....

........nothing more, nothing less....

The Fementalists

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