Migraines

Post migraine exhaustion…
Been trying to finish this tiny portion of apple-cinnamon-porridge for the past hour or more… Some migraines leave my body in a right state and it takes a couple of days to recover. I feel hungry but too nauseous to eat. I know that eating is the only way to stabilise my body so I keep trying.

I get different kinds of headaches. Having had headaches since childhood Ive learned to distinguish the different types and sometimes that helps me look after them better.

I also get different kinds of migraines. I get hormone related ones which are pretty awful but usually I can do some stuff. They feel like my liver has decided to stop working and my body is full of toxins and the migraine is a kind of rebooting of my body.
Then I get migraines from eating stuff I shouldn’t have though it’s not always easy to predict if I’ll get one or not… They feel like my stomach is shouting at the rest of my body and my gut stops working so everything else stops working too. It literally feels like the pain in my head has travelled from my stomach up along my spine and into my head. These ones often pass if I manage to get some salt and sugar and stabilising foods like butternut squash, potatoes and sweet potatoes. (That kind of food can also help with the hormonal migraines I find)
Then there are tension migraines that usually start as a headache and develop into a really bad headache with migraine like features.
And finally there are the m*****f***** evil migraines. The superior migraine of migraines. The ones where there is nothing I can do. Nothing brings relief. And I just have to wait and wait and wait. Time stops existing because there is only this moment of pain and then the next one. And the next one… And I whine and I moan because I don’t know what to do. But that doesn’t change anything and it’s too loud anyway so I stop. And even though I’m in a dark quiet room, everything is too much. My own breathing is too much. The sensations of my body is too much. Movements make me throw up. The throwing up is not like normal throwing up. It’s like my body goes into spasms and I can barely breathe. My body will keep trying to throw up long after it’s emptied itself. These migraines seems to be like a trauma response. If I’ve been doing too much and gotten too intensely overstimulated. It’s my body’s way of stopping me and screaming at me. At times it can feel like my body is incredible furious with me and that there is nothing it can do but go into migraine mode.

With some of the other migraines it’s a relief once they start receiding. But with this one the pain goes away ever so slowly and I continue to feel weak and nauseated. I also feel like it could get worse again if I do too much so recovering is a slow and careful process.

So I have to be patient and I try to accept that I have to slow down for a couple of days. Not easy, though. Things I need to do. Things I want to do.

In the aftermath of a migraine I try to appreciate the migraine as a teacher. It tells me about my limits (however annoying it is to become aware of limitations) and it teaches me patience. It also helps me refocus and think about what my priorities are – what is most important for me, here and now. It also teaches me to have a very nuanced perspective on pain and appreciate times when I am in less pain.

Real lives, real experiences, real wisdom

There is such an untapped wealth of knowledge and wisdom that comes from people’s personal experiences of finding their way through life.

Integrated Voices (its current working title) is a website being developed by Hearing the Voice in Durham and when I first heard about the plan to create this online resource, I got really and properly excited.

I don’t often get really and properly excited. I’m not an excitable person – I am more of a reflective and calm (outwardly anyway) kind of person.

When I do get excited, several of the voices I hear will start commenting on my thoughts and feelings. Especially one voice will get very active, telling me all the reasons why getting excited about anything is a bad idea. I am pretty sure she sees herself as ‘the voice of reason’ but I just find myself feeling more anxious when she comes along. I don’t like feeling anxious. She thinks a bit of anxiety is healthy and will keep me safe. We have debates about this, her and I, in my mind.

As far back as I can remember I have heard and sensed things that other people don’t. Invisible beings – both friendly and scary, critical voices in my mind, disembodied voices from my environment, repetitive voices, loud voices, supportive voices, annoying voices, presences using non-verbal communication and many more experiences like this.

When I was about 8 I realised that not everyone has these experiences and for the following 15 years I tried to figure out what was going on for me. And I was trying to figure it out on my own.

Back then the internet was just in its infancy, so most information came through books. I ended up reading books on spirituality, psychology and psychiatry without finding much that seemed useful to me. Eventually I started reaching out for help from others and in 2005 I joined a project in Aarhus (Denmark) for people who had experiences similar to mine.

It was such a relief to find a community.

Connecting with others, sharing stories, ideas and strategies and getting creative together about ways to cope when things were difficult. Sharing difficulties and joys, supporting each other and witnessing each other’s journeys. It was a new experience for me because I was used to feeling like a bit of an alien and on the outside of things going on around me.

Being part of the project fired up a passion in me for destigmatising experiences often seen as ‘abnormal’ or ‘psychotic’ such as hearing or sensing things that others don’t.

I know that I was lucky to find community and information that was useful to me. I have heard many people talk about how difficult it is to find information that feels relevant to their personal situation.

Even though the internet has come out of its infancy and is now bursting with all sorts of information, it is striking that there still isn’t a website such as the one Hearing the Voice is aiming to develop. There are particularly two things that got me wanting to get involved; the team at Hearing the Voice is looking for diverse experiences and they are wanting to make the website as engaging and accessible as possible.

We believe that it is important that this section of the website is developed by people with personal experience of hearing voices and includes a variety of different perspectives and experiences. We want the website to reach out to as many people as possible, to feel accessible, engaging and ‘real’, and to showcase knowledge gained through lived experience, alongside that which comes from research.

Hearing the Voice

From now and until May 4th I will be trying to collect as many stories, quotes and ideas about coping as possible. These contributions will help shape the Integrated Voices website and hopefully make it feel relevant to a diverse range of people looking for information.

I am getting support from my partner Rufus and help from the team at Hearing the Voice to do this work – and so far I am quite enjoying myself.

To contribute

I am aware that calling it ‘hearing voices’ doesn’t resonate with everyone. We would love to hear from people who have experiences such as djinns, spirit guides, schizophrenia, auditory hallucinations, persecution, electronic harassment, intrusive thoughts, thought transmissions, inner voices, ancestors and invisible presences.

If you are reading this and you have personal experience of hearing and sensing things that others don’t, please consider if you want to contribute in one way or another.

If you are supporting someone who hears or senses things it would be great if you could make them aware of this project and find out if they want to contribute.

There is also a questionnaire for family, friends and supporters which you can find HERE.

Online questionnaire

We have launched an online questionnaire. It consists of about 10 open ended questions about everyday life with experiences such as voices, coping with these experiences and talking about them with others.

Go to questionnaires HERE

If you prefer a word document or paper version of the questionnaire you can contact me to arrange this.

Focus groups

We will be facilitating two focus group sessions – one in Manchester on Friday May 4th and one in London on Thursday May 3rd see more HERE

Interviews

If you would like to share your experiences and ideas about coping in a 1 to 1 interview you are welcome to get in touch. We might be able to meet to do the interview depending on where you live but we could also do it over the phone. We would like to audio record interviews to make sure we don’t miss anything or misunderstand. Any material we collect will be kept securely and won’t be shared with anyone without your permission.

If you are interested or have any questions about interviews, please contact me by email openmindedtraining@gmail.com

Visiting Hearing Voices groups

I am arranging to visit different Hearing Voices Groups in the UK to have informal sessions where people can share their knowledge and stories. If you are a member or a facilitator of a group and you want to contribute you are welcome to get in touch and we can look at different possibilities.

Deadline for participating will be May 4th

Contact me by email openmindedtraining@gmail.com or phone 07926685432

 

Information about Integrated Voices and Hearing the Voice

Hearing the Voice is currently working with members of the voice-hearing community to develop Integrated Voices – a new online resource that will help people find clear, balanced and comprehensive information about hearing and experiencing things that could be understood as ‘voices’.

The hope is that Integrated Voices will make it easier for people to find information about different approaches to hearing voices and ways of supporting those who are struggling with the voices they hear.

The website will have 3 key sections:

  • Understanding Voices
  • Living with Voices
  • Working with Voices

Each section will have modules linking to a variety of resources, multi-media, freely accessible research articles, personal narratives, reviews of the evidence base for specific therapies and (where appropriate) sources of support.

Hearing the Voice (HtV) is an eight-year multidisciplinary research project based in Durham, UK.

It combines insights from the humanities and sciences to provide a better understanding of the experience of hearing voices.

The project is funded by a Wellcome Trust Collaborative Award in Humanities and Social Sciences until 2020.

More information about Hearing the Voice: www.hearingthevoice.org

Transitions

After two weeks on the road and working intensely in Ireland, I am now back home.

I am fortunate that I love where I live and I love my home life with my partner. I feel like I have been away from home for too long. Despite my relief and gratitude I also notice feelings of anxiety and restlessness.

Very unlike me, I got up quite quickly this morning after waking up and got a lift with my partner into the little town we live nearby. I had a meeting later in the morning and thought I might as well go to a cafe and wait.

I am finding myself still in the cafe – nearly 5 hours later. Been catching up on work, responding to emails and getting an overview of November. But I am also idling… Not really wanting to go home.

I think I am surfing the wave of energy that I have created while I was away. For me to cope with working intensely it is necessary for me to create these waves. And its exciting while it lasts – I get a lot done. But I cannot maintain such high levels of energy.

Sitting here, feeling my restlessness and noticing my reluctance to go home, I realise I am struggling with the transition. I don’t want to get off the wave.

I know I am overstimulated from all the experiences and inputs I had while in Ireland. I also know I am anxious about the coming month. And because of the busyness of the past 2-3 months – and the awareness of the busyness of November – I get a slightly constricted sensation in my body. A feeling of not being able to breathe or think – like I can’t hold the things  that I need to prepare for in my head. As if these things are just out of reach within my mind and a fear of forgetting something important starts creeping in. I find myself beginning to make lists to help me remember. I go over my diaries and plans repeatedly. I feel my ability to focus is slipping away.

Surfing a wave of energy – even when manufactured by myself – creates a sense of focus. I take one thing at a time and accept that I cannot prepare for the next thing until the present work is over. I find myself determined and capable in ways that are slightly unfamiliar. I was – amongst other things – able to deliver a 2 day workshop with my partner despite being ill with the flu. And in the 2 days off I had scheduled in for myself between work, I ended up being out and about rather than resting. While I realise some people might call this ‘flow’ to me it feels like a somewhat compartmentalised state of being.

Coming home I can feel how this compartmentalisation is crumbling. Daily life with daily chores, concerns and responsibilities, daily life dynamics with my partner and daily life dynamics within myself – it all makes me aware of the parts of me I have had to push to the side to ride this wave.

There is grief in transitions, I find. And frustration of having to let go of a certain state of mind. Learning to be aware of transitions and honour them has been important to me, but to do that I have to slow down.

I am apprehensive about the next couple of days. Will I crash? Will I feel caught in limbo unable to crash because we are going away again 3 times in November? What will this crash look like (physical illness, low mood, exhaustion or something else) and how will I manage it? What if I don’t crash – what will I do?

Earlier in the year I had plans to take 3 months out – a sabbatical. To clear my head, step back from my life and try to create space to rethink how I do things and see if I need to refocus. I had hoped it would be November, December and January. But work related things have come up that feel too important to pass it up. And then I planned a trip to Denmark and suddenly November and December feel full. Of good things but too full for me to properly take that step back.

I wonder if I will find the determination to make my sabbatical happen. I will have to commit to saying no. Maybe part of me feel anxious about stepping back from work. Like now – the fear of missing out when I don’t stay on the wave. But just in a bigger way – 3 months seem like a long time…

Gallery

Who needs a father anyway?

Who needs a father when there are so many good men in the world doing their best to relate to women (and men) in kind and meaningful ways…?

It was father’s day here in the UK very recently and as always it makes me feel slightly torn. I enjoy the posts I see on Facebook where friends share their love and appreciation for their fathers, stepfathers, grandfathers and any other kind of father one could think of. I loved the look on my partners face when he came to tell me his sons had brought him chocolate because of father’s day. I just generally feel joyful when people show each other that they care.

But another part of me gets annoyed with father’s day and I catch myself having inner dialogues about “how superficial and commercial it all is”.

When I take a closer look at my annoyance I find that it is just self-protective palaver designed to keep certain feelings at bay. Feelings of sadness and confusion – a deep grief that never really eases or shifts.

When new people come into my life – or when I do training and talk about my life – at one point people will ask about my family and my parents. And I will often just talk about my mother and my siblings. Some people will continue to talk about my parents in plural or they will ask about my father and this is when I say “I don’t have a father”. And I really, really mean that; I grew up without a father – or even a stepfather – and I still don’t have a father. Because the man who contributed to the creation of me has never taken an interest in me.

My mother decided to raise me on her own and she also decided not to get into a relationship again, which meant that there were no male role models close to me as a grew up.

Even though my mother’s feelings towards my father must have been complex, she never said a bad word about him to me; when I was young she would tell me very simple stories about him when I asked. Stories about how he looked and how he worked on ships.

My mother also seemed very aware of her own limitations raising me as a single mother. She made sure I spent time with my great aunt and uncle as well as families of friends so that I could experience different kinds of family lives and learn social skills that she couldn’t teach me.

As I got older life got more complicated for me and I began to wish that I had a father – someone who would love and support my mother but also someone who could help with the conflicts between my mother and I. I started to wonder why my mother was on her own and why my father wasn’t interested in me and in my powerlessness to change the situation I started believing that I was cursed. That there was something evil about me and that this evil had put a curse on my mother and I so that neither of us would ever be loved.

This belief was in some ways easier to cope with than the anger I felt towards my mother – the anger just caused me more pain and shame while the belief that I was cursed gave me something to work with.

If I could just be “a good girl” and keep the evil under control, then things could change.

The irony is that knowing my mother as I know her now, I am pretty sure she never wanted me to be “a good girl”. My mother has always supported my self-expression, autonomy and uniqueness and I know she noticed it when I began to struggle as a kid.

She did what she could to support me but I imagine it was difficult as I began to withdraw emotionally and refused to talk about what was going on. Looking back, I also think it was near impossible for me to express all the thoughts and feelings I had as I was only 8-9 years old and didn’t have a language for it.

I have a very clear memory of deciding not to talk about the things I was struggling with because I didn’t think anybody would understand (I barely understood myself) but also I was worried about contaminating others with all the horrible things I felt inside.

Keeping the belief that I was unlovable alive, wasn’t difficult – it’s pretty easy to make sure you love people who can’t or won’t love you back and there it is: proof that you are unlovable. I’ve done that a lot. Also I used to avoid building friendships that I wanted to last because I couldn’t cope with the pain of separating from people.

But I didn’t get to control everything in my life – luckily! So somehow people started coming into my life who just seemed to like me and care about me without me doing anything to deserve it…

As the years passed I slowly got more comfortable around men who were nice to me – though I still get pangs of paranoia and think to myself that they are only kind to me because they want something from me. But I kept finding the courage to trust and little by little my experience of having meaningful friendships with men helped me create a new belief system within me. Belief in my own worth and my own strength; that I could trust my own judgement about what I needed, about my boundaries, that I had the skills to look after myself in a gentle way and that I had something valuable to bring to the world.

Most importantly I began to receive the love that was offered to me.

I don’t know what my life would have been like had I had a father – somethings might have been easier and somethings might have been harder.

I do know that I deeply treasure my relationship with my mother and had I had a father it would not have been what it is today – simply because the dynamics between us would have been different.

I also know that I really like how I am (well, most of the time anyway); I like the values I have, my outlook on life and the way I experience the world. And I would be a different person had anything in the past 35 years turned out differently than it did.

Part of being who I am, is living with this grief in the pit of my stomach; it is not quite loss, not quite longing, not quite abandonment or rejection. It is more like an emptiness or nothingness, a not knowing but at the same time it has density and a certain heaviness to it and its dark, dark blue…

This blog is written to celebrate all those men in my life – past and present – who have related to me in ways that made me feel loved and valuable.

Men who were able to meet my needs for safety, joy, choice, nurturing, respect, mutuality, acceptance, consistency, integrity, openness and growth.

Thank you!

The black-blue pain may never dissolve but your presence in my life has made it easier to carry.

The list of men who have helped me on my journey is actually surprisingly long. I have begun to write it out in more details and with stories but it suddenly felt too personal and exposing so maybe that list is for another post on a later occasion…