Darkness

Nobody reads this blog, so it's ok. I'm safe to vent.

I've been here once before. My current mindset, I mean. Constantly questioning "what's the point?"  Wondering how much longer I can continue like this before something snaps. Like last time. Except this time I can see it building. I know the signs. I know where this is leading. But what I don't know is how to stop it, because things in my life won't let me stop it. In many ways I am in a far worse place than before. My life has changed beyond recognition. When I implemented these changes it was a way out of another very bad situation. But I did it wrong. I rushed into it when I wasn't emotionally ready, because there wasn't any other option. I should have made the perpetrator of that situation pay for their actions. I may do that yet, there's still time. But that's another story. Needless to say I shouldn't have been the one to give up everything I knew. I was very let down by the people who could have - should have - stopped things reaching the point where I had to go. It shouldn't have been me leaving. It should have been the perpetrator or at least the little bitch who proved to be the catalyst. Still, blood is thicker than water. Should have remembered that.

Anyway here I am, sitting here at 7:00am on the Tuesday after the long Easter bank holiday weekend off. Sitting in tears, as is usual on a work day, because soon I will have to leave the house. Today isn't as bad as normal though, because I am working from an office closer to home. Home is my safe place, and today's office is a safe place too. I panic if I am too far from home and familiar surroundings. The pace is slower there too, I am not constantly "on" and it is quieter. I can't cope with the endless noise, the constant "on" of the other office. I am not emotionally built for constant stimulation, the constant "on" Something I realised when it was far too late. Consequently I am always battling that fight or flight feeling whenever I am "on". It is physically and emotionally exhausting. Add the commute that takes the best part of an hour each way and doing the actual on job onto that and I honestly couldn't tell you how I have survived the last six months. It isn't anyone's fault, all mine. I was naive about what I was applying for, if I had known I certainly would have stuck it out at the old place for a bit longer. And anyway, I wasn't to know that it wasn't for me until I tried it. The people are all so so lovely, very welcoming and I have made some good friends. Just the actual role is beyond stressful. For me anyway. On paper it is ok, and for plenty of others it is a fab little job, but for me I can't put into words the level of anxiety it causes me. I am made to deal with people face to face at a less hectic pace. That's all I can say really.

Tomorrow and the rest of the week I will be back to hellish levels of anxiety where I can't get off the loo, my throat feels as though It is constantly closing and all of my energy goes on not crying. Keep it together, keep it together... counting down the minutes, literally, until my next break and then finally, home. Where I spend the drive home either numb or in tears, then get into bed no more than an hour after I am home. Sometimes I get into bed immediately. It depends.

Many years ago, I used to want someone to save me. How stupid was that? People are just arseholes, especially the ones I let in, the ones who I literally gave everything to never cared about me like I thought they did. Proof is in the pudding. Dropped like a stone when they no longer needed me. No  payback either. People I love always leave in the end, one way or another. But now, there's no saving me. I can't even save myself any more. I am exhausted with trying to save myself, it never worked anyway, I know that now. It has just left me grieving for my old life and feeling angry at those who drove me out.

I am fed up of feeling trapped. I feel totally and utterly trapped in every which way. Trapped by work, trapped by my body, trapped by life. I need to escape NOW. I can't wait for things to get better. I am fed up of people telling me to hang on in there because things will get better. I have waited almost 6 months for things to get better, and it bloody isn't getting better. Everything is getting worse, not better, not easier. I am getting worse. I need to reduce my hours desperately and not work a Wednesday (joint decision between my GP & I) but if I do that then I am stuck because i will be so much out of pocket because of the cost of petrol to get to work. It won't be worth it. I am already worse off financially because I have now lost my Tax Credits because this job is better paid, only the fuel cost to get there has taken up all of the extra salary, and then some. I am spending a huge amount on the Lotto every week, because it gives me some hope of an escape. But that's a mugs game isn't it. The only hope I have though of getting away from everything, so I take that hope.

I think I am fast becoming not very well again emotionally. I mean, it isn't normal to think about purposefully taking your car off the road on the way to work is it, just to escape everything. The only thing that stops me is not wanting to inconvenience anyone else just because I feel like shit. I just want to slip away somewhere quietly without anyone knowing. Knowing that I have that last resort option in the back of my mind keeps me going, somewhat. It is an escape plan after all, if all else fails. I don't want to die, because of those left behind who might miss me, like my parents and my sister who is my world. But I don't want to live in this headspace any more. I don't have anything to live for, only Poppy cat, but she would be looked after and loved I am sure, she is adorable. No children, no partner. This isn't how my life was supposed to turn out. I should have those things. But those good things happen to other people, not to someone like me. I am not loveable and certainly not a catch for anyone so I guess it figures. Who would want to be saddled with someone like me?

I sound crazy. But don't they say that you wouldn't know if you are emotionally ill if you were? So does that mean I am ok after all? If I am ok, why am I constantly feeling close to tears, moods up and down like a yo-yo, wanting to stay home and thinking about not being here any more? That can't be ok? I don't even know any more. I can't remember the last time I felt calm, happy and not feeling as though I am hanging onto life by the thinnest thread.

I am so so so tired of putting a brave face on, seemingly getting on with things. Smiling and making lighthearted chatter when inside I just want to cry and go home wherever I am. I am so tired of feeling exhausted and in pain every fucking day. Having fibromyalgia  is shit. Having cerebral palsy is shit. Having BPD, anxiety and depression is shit. Try having the lot of them all together and see how you feel! I am tired of being told that I am a high functioning BPD patient, here's some DBT worksheets, now run along and complete them yourself, make yourself better... nobody takes me seriously when I say I am this close to giving up, they don't see me now sobbing, they don't see me almost every day sobbing driving to work (I say almost every day because I sometimes car share, then conversation distracts me somewhat), they don't know that I stopped wearing makeup to work because I keep crying, and my makeup is too expensive to be cried off before I even get to where I am going. I have medication that I am supposed to take, only I am scared to because of the side effects, remembering all too well what Citalopram did to me. Just the scary thing is that my mind is back there now, this time without medication fucking it up. This time it's my head fucking up. And I am not scared of just those side effects, but also the mind fog. I struggle with remembering everything as it is!!! My brain is so oversaturated with info that there's no room for leeway, not with what I have to do all day. It's all go, go, go. Be on the ball, recall info just like that. And then there's the weight gain side effects and with my background that's not good either... I don't know what to do. As I said, I'm trapped.

I am trapped and I want to run, so desperately. I want a crystal ball. I want someone to tell me that everything will be ok, I want to know that everything will be ok. Except it won't be ok, and I just can't carry on like this. I don't want tomorrow to come.

Comfortably numb... but now what?

Without going into toooo much detail, 2016 has not started well for me, mental health wise.

One of the things that came out of my New Year Episode was that we (the royal "we" being my GP, psychiatrist and I) realised and agreed that my antidepressants have slowly but surely been making me worse. Much worse. I was prescribed them years ago, back when the catalogue of my years of messed up thoughts and rollercoaster of emotions was simply diagnosed as severe depression. Since then, I have been diagnosed with Borderline Personality Disorder (BPD) and as I said, it has become clear that Citalopram has NOT been my friend.

I have now been off my antidepressants for exactly a month. 2016, so far, has been damn hard.

The very rapid withdrawal from my antidepressants has been HORRENDOUS physically and emotionally.

Physically... I've had nightmares, debilitating nausea, dizziness, sweats, and worst of all, what I can only describe as "brain zaps". It feels as though your brain is being electric shocked... kind of like when you've had one vodka too many and it takes your vision a few seconds to catch up when you turn your head, but with this, ZAP! your vision moves in and out, your thoughts are jumbled and you feel generally disorientated. Actually, I would say that the brain zaps have been the worst part, and they continue to this day, although much less frequently. They are fading in intensity too, so there's a positive.

Emotionally... A month down the line and I am beginning to realise just how ****** up I have been due to Citalopram fog. Now that the fog is beginning to lift, I am aware that I have been walking around and functioning in a zombie-like state for years. Comfortably numb, but at the same time feeling all of these emotions bubbling away under the surface and not quite knowing what to do with them.

Don't even ask me how I have kept my job, because I have no idea.

Now, I am beginning to be aware of thoughts and feelings, and they are powerful and raw. I suppose they are real, no longer concealed below a window that I could see them through but couldn't quite open to let out, at least in a way that wasn't self-destructive.

I was speaking about this to my GP last week, because it is quite frightening, Again, all of these real emotions and what do I DO about them? How do I start to process and work through them with a clear(ish) mind? It was bad enough coping with the safety net of the Fog, but now I just feel as though I am free-falling.

My overall emotion is anger. I'm not outwardly angry. I don't lash out or scream and shout... but it's there. A big black swirl of it.

I'm angry at everything and everyone. I crave company, but then people annoy me and I just want to be alone again. But I don't really, because then the self-destructive thoughts start and I can't tell them to shut up. I can't make myself feel better. I never have been able to.

These last couple of weeks, I have been weepy and scared. My appetite is insatiable. I am constantly hungry, which is very unusual for me, and with that comes my fear of gaining weight, when I have tried so hard not to.

But mostly I am angry. Inwardly angry, I feel misunderstood, and that pisses me off. I feel judged, and that pisses me off. I feel as though I have to explain some of the choices that I make, and that pisses me off. I feel as though I have to justify myself to people, and that pisses me off. I feel as though people just want me for their own inconvenience, and that pisses me off. Basically everyone and everything pisses me off. SO MUCH ANGER.

I don't know who I am any more. I don't know if my thoughts are valid. I not the person I was before my mental illness took hold, and for so many years I have been hidden beneath Citalopram Fog, I feel like a teenager again, trying to work out who I am and what my role is in the world. It was bad enough being a teenager the first time around, and I don't like feeling like one now. No thanks.

I hope this passes. Outwardly I am me as I always have been, smiling, making conversation... inwardly I am a horrible arsehole. What if that horrible person is who I am now?!

We have been talking about me starting on a drug called Mirtazapine, but for the moment I want to see how I get on living and feeling "in the present", without meds. It's difficult, but I'm not drowning in my thoughts and emotions at the moment.

The Mental Health team have been supplying me with DBT booklets and worksheets to complete, because I am "high functioning" and they feel that I will be able to work through them myself. There is a very long waiting list for group therapy, I am finding them quite difficult to be honest, and can't envisage ever grasping "mindfulness". But I am giving them a good go. I hope to look back on this post in a month or two and feel very differently about everything,

I'm taking it day by day.

Winter Blues Essentials...

I don't know about you, but I always feel a bit down and deflated in those transitional days after Christmas, after the tree and pretty decorations have been taken down and it's time to get back into the normal routine of the working week, when most of us go to work and arrive home in the dark and spring sunshine feels a very long way away.

I always look forward to coming home, closing the curtains, shutting out the world and snuggling down with my winter blues essentials.

What are your favourite things to cheer you up after Christmas?

BPD Awareness Month... let's stop the stigma!

In November 2014, after many years of struggling with my mental health, I was diagnosed with BPD (Borderline Personality Disorder, soon to be re-named Emotional Intensity Disorder because of the stigma attached to a "Personality Disorder")

BPD isn't as scary as it sounds, it just means that I and others with BPD are emotionally fragile and we wear our hearts and emotions on our sleeves. For me, the ugly truth is that I have no self esteem and constantly wonder why people like me, why people want to be friends with me, whether I'm generally good enough at life. I can take things personally and catastrophise the smallest thing into something that ends up really upsetting me. In short, I am not always the easiest person to be around.

When I was first diagnosed with BPD I searched for support groups on Facebook. I had never heard of BPD before and needed to talk about it and come to terms with it with people who were going through the same thing.

I found a tiny, tiny group and those amazing, beautiful, brave people from all corners of the globe took me under their wing and gave me the most amazing help and support when I needed it most, and for that I shall always be grateful. I now consider these people to be my extended family, even though we've never physically met.  

I then told a few very close friends about my BPD before I told my close family. My friends were amazing about it, just as I knew they would be, I gave them links to read in case they wanted further information but aside from that they just accepted it as part of me and its never been brought up in conversation since. That's not to say that they wouldn't be there if I needed them, because they would without exception. But its just not necessary to address it, because it's not an issue. 

My Mum and Dad didn't really say much when I told them, as in literally didn't say much. It was pretty awkward to be honest. I don't think they knew what to say. I gave my Dad a pamphlet to read that I had downloaded and printed from MIND's website - please follow the link if you would like to find out more -  and I lent my Mum my copy of The Borderline Personality Disorder Survival Guide: Everything You Need To Know About Living With BPD. Dad seemed quite taken aback when he read the booklet, but neither of them have mentioned it since and I don't know whether Mum has read the book. To be fair to them we have never discussed anything as a family, and I know that neither of them are comfortable discussing things like this.

I had to tell my bosses at work because I went through a bad crisis in the autumn and it was obvious that I was very unwell. I am grateful and fortunate that they have been very understanding.

In addition to BPD, I also have depression and GAD (General Anxiety Disorder). I was diagnosed with GAD at the age of 14, when I was first referred to a child psycologist. I was diagnosed with depression at the age of 24 although I know that I had suffered with it for years before my official diagnosis.

I have been seeing a counsellor since 2010 and have been receiving DBT (Dialectical Behaviour Therapy) since the beginning of this year. I'm taking anti-depressants and the good news is that BPD can be managed. I'm learning how, and I'm getting there.

This describes living with BPD so accurately!:

I hope that this post can help at least one of you. If you are experiencing similar mental health issues, I want you to know that it's ok to be you, just the way you are. It's ok to struggle if you're having a bad day - sadly it's all part of it. 

But most importantly, if you feel that you aren't coping and/or are experiencing thoughts of self-harm or suicide, PLEASE see your GP for help or speak to someone that you trust. It's ok to let people know what you're going through. 

Let your friends know how you are feeling. If they are true friends they will want to know. They will want to be there for you and they won't judge you.

If you feel that you can't speak to someone you know, The Samaritans are at the end of the phone 24 hours a day, 365 days per year. Please give them a call on 08457 90 90 90.

Don't be afraid to discuss mental health because the biggest killer is silence, shame and embarrassment rather than the actual condition. I find it so sad that in 2015 there still seems to be some degree of stigma and prejudice asssociated to mental health and it doesn't and shouldn't need to be this way. Let's Stop The Stigma together!

And remember, be proud to be you. Things WILL get better xx

Books waiting to be read...

My kindle is always either in my handbag or on my bedside table, and it's been used almost daily since I bought it around three years ago. While I love my kindle and credit it for getting me over an extended reading slump, I've missed reading "real books". One of my main reasons for purchasing a kindle was to reduce the amount of books that were taking up space that I didn't really have.

But late last year I gave my living room a complete makeover and I now have more than enough space for lots of lovely books. (I won't go too mad though!)

So for 2015 I've decided to cut down on downloading e-books and pick up some books that have either been purchased by me and have sat gathering dust (literally), books that have been bought for me or books that I've borrowed from friends.

Kane and Abel by Jeffrey Archer
I've borrowed this book from my friend John. I've probably had it for around six months and have stopped and started reading it a couple of times so I really should finish it so I can give it back to him! John did a really good sell on why I should read this, and as you can see from the condition it's one of his all-time favourites. Apparently he reads it at least twice a year, every year, and I'm really curious as to whether I'll love it as much.

Eeny Meeny by M.J. Arlidge
This book was a Christmas present from my friend Helen. A quick scan of the back cover tells me that it's a bit of a crime-thriller, which isn't my usual genre (I'm normally a fan of non-fiction, chick lit and YA) but it sounds as though it will be an intriguing read and it'll do me good to read something a bit different.

Bonkers by Jennifer Saunders
This book was also a present, this time from my friend Lou. I can't think of Jennifer Saunders without thinking of her TV partner-in-crime Dawn French, and her book "Dear Fatty" made me laugh out loud several times. I love autobiographies and am sure that this will be a great read.

Gone Girl by Gillian Flynn
I'm probably one of the last people on the planet to read this (and I haven't seen the movie yet either, because I'm one of those people who likes to read the book first!). I'm going to read this one soon because its annoying me that I haven't yet got around to picking it up.

A Great and Terrible Beauty by Libba Bray
This YA book originally popped up as recommendation on Amazon and I ended up spotting it in a local charity shop for £1.50. The best part was getting home and finding a note amongst the pages from the previous owner/reader. What a fab idea!

The honesty of this really made me smile. I'm going to put little reviews in books that I take to the charity shop from now on!

Have you read any of these books? I'd love to know what you thought if you have. I'm always open to book recommendations too, so feel free to comment if you've read something that you think I'd like!

Wise Words Wednesday...

Source

Disability Diaries - AFO's 101: Are you standing comfortably?

Comfort - initial thoughts
Putting your feet and legs into rigid plastic cases, no matter how pretty the design is or how well padded they are, is never going to be an entirely pleasurable experience.

You're probably going to have your feet placed in a different position to your usual, and the nature of AFO's will mean that you will have to learn how to walk in a slightly different way. It's all very strange and not something that is easy to explain unless you've worn AFO's yourself.

The orthotics team at my hospital are fantastic and check everything over and over to ensure that my AFO's are as comfortable as possible but like me, you'll probably find that your AFO's will rub, dig in or leave red marks at first, because they're new to your legs and it's all a bit of an alien experience.

You will probably be asked to attend a further orthotics appointment a few weeks after you receive your AFO's so that they can be checked again and adjusted if necessary. I had to have them lowered at the top of my calfs because they were too tall and pinched the back of my knees when I climbed stairs or sat down. I was also given Velcro strips to stop the knee pads from dropping down and bruising my shins.

You also need to remember that AFO's may be pretty heavy, which makes walking a bit more of a challenge. My AFO's weigh almost 1kg apiece (and I can tell), so I suppose you could say that I'm walking whilst wearing leg weights!

Comfort - now
At the moment my AFO's are pretty painful because I've lost a lot of weight since they were made. Despite wearing long socks and leggings, I can't fasten the Velcro straps tight enough to stop my legs from slipping, and they're very loose on my ankles even though I had additional padding added at hospital a few weeks ago. Because my AFO's are heavy, the momentum of walking means that they're rubbing a fair bit which causes blisters. Not pleasant, but I'm having new AFO's made (I can't wait to get rid of the blue colour!) so these problems will soon be a thing of the past.