Mental Health, Epilepsy & Me!

Some un-edited, first draft thoughts for Mental Health Awareness week!

At 15 I was diagnosed with Juvenille Myoclonic Epilepsy following a big Tonic Clonic seizure when I was alone on a train. Subsequently it was realised my life-long history of ‘behavioural problems’ where infact Absence seizures. The physical effects of my epilepsy were dealt with relatively quickly, trying a truck load of drugs to ‘manage’ the symptoms, the actual seizures.

 However, the emotional impact of being diagnosed with Epilepsy was never even discussed. The sudden labelling as a ‘disabled’ person, the restrictions put on me, the overnight terror my family tried to hide from me but that I could feel radiating from their hearts was never mentioned. The casual mention that I might never have children and the cataclysmic realisation that at any moment I could have a seizure, hurt myself, die even, was life altering in a way that I don’t think words can fully describe. Not to mention that the drugs had side affects, made me not sure if the way I felt was ‘me’ or the drugs. All that mattered was that as far as Neurologists where concerned, I was OK. My Epilepsy was ‘relatively well controlled’….yes I had ‘breakthough random absences’ but generally it was OK.

When I was about 18, the panic attacks started. At first I thought they were a new type of seizure. My vision would go funny, I’d hyperventilate, sweat, feel sick, like I was going to pass out. My EEGs revealed that this wasn’t epilepsy. Simply ‘fear of it’ my Nerurologist said and recommended some CBT therapy. For him it was good news. For me it was another part of Epilepsy that I just had to ‘handle’. The CBT (Cognotive Behaviour Therapy) helped for a bit. I did yoga and learnt about meditation. That helped. A bit. I hid how I felt. Laughed it all of. Made light of epilepsy. Avoided talking about it at all. Left the room if anyone mentioned it. I couldn’t watch anything with people having seizures in it. I despised Epilepsy charities. Hated my Medic-Alert wristband.

Then I started to get Back Pain, small things at first, a twinge, my book would ‘go’. Then there would be a week every now and then that I couldn’t walk I’d be in so much pain. I thought maybe a seizure had hurt my back somehow. Then I went through a work discrimination case about Epilepsy. After that I couldn’t walk for six months. Was told I might never walk properly again. During that time I received a diagnosis of PTSD- post traumatic Stress Disorder linked to Epilepsy. I had flashback to the worst seizures I’d had, nightmares, panic attacks. Even when my Epilepsy was ‘good’ I lived in fear of not getting enough sleep, not having enough food to balance my sugar levels, anything that might trigger a seizure. After much research and countless doctors visits, I learnt that I have a stress-induced Chronic Pain Condition. I believe this was started when the emotional impact of my diagnosis was ignored. It flares up when I have a negative thought which triggers my body into flight or fight response, restricting oxygen blood flow to my muscles, normally my back which is agonising- much like when people blush or get errections – a thought = an actual physical symptom.

Slowly I began to change my life. And learnt to walk, then run again. I started to have regular Body Psycotherapy which I make a priority. I work constantly on trusting body, I prioritise my mental wellbeing and recognise that for me this has been the biggest impact of Epilepsy. Some days are harder than others. Connecting with other people with epilepsy is a big step for me. Epilepsy is so very much more than seizures.

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Our first rule

If there is one thing I have learnt from this pregnancy so far it’s that; nothing is predictable. Therefore having expectations is a total waste of time. Every day is new. Every minute, every hour, every second my body changes. Once life took hold inside me, I was essentially along for the ride. The best I can do is hold on tight, try to keep my eyes open and see the light.  But it’s hard. I do dream.

I dream about what it’s going to be like to hold this babe in my arms. I dream about who our babe will be. I wonder what will they like? What will they hate? What do they look like? How will I feel? How will they feel? The thought of witnessing their first breath is so overwhelming my mind goes blank, my fingers freeze over the keys as I try to comprehend that moment. In the early days giving birth didn’t seem real and now it seems inevitable. In a surreal way I feel that I already know this baby. I’ve known her/him all my life. And yet that is ridiculous. How can someone I’ve never met, who hasn’t even existed be known to me?

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………………………………………

Dearest baby-bub,

I watch my belly rippling, pushed out by your tiny feet and hands, little bottom tucked in there and your head bobbing up just here. I wonder and hope. I hope I’ll be enough. Be calm and safe and good for you. I hope my arms will know how to hold you as gently as my womb. I hope that you will like the world, see the light despite the dark and be happy you were born. I don’t know what to expect, or how I’m meant to ‘parent’. The word sounds strange and foreign and not a part of me. I turn it over in my mouth ‘parent’. I suppose that means that I’ll make some rules, try to keep you safe, guide you, love you. I can’t imagine what rules they’ll be. For now all I can think is. I hope that you will love yourself. I hope I find a way to help you do that.

When I grew up ‘loving ourselves’ was never discussed. Wasn’t encouraged, was seen as impolite. It has taken me thirty years to learn that if we don’t love ourselves first, we can’t ever really let ourselves be loved. We accept the love we feel we deserve, so if we don’t value ourselves, don’t truly love and respect ourselves first, others never will. I hope you don’t take thirty years to learn this.

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So here on my blog, with that in mind I’m making a promise to you, perhaps the first rule for our new family. A rule I wish I’d had.

We will only speak positively about ourselves. Most specifically we will speak positively about our bodies and our individual talents. We will compliment each other on all achievements not just on physical appearances. I want you to know, to really know, deep in your toes that what you weigh, what age you are or what you look like has no bearing on who you are. How kind you are, how fun you are, on your abilities or on your beauty. We will discuss healthy lifestyles and appreciate exercise and whole foods whilst eating all the cupcakes if we feel like eating them!

I grew up believing that it was polite to put myself down, that that is what ‘good’ people do. The goodest person I knew was/is my mum your Granny. When I was little she was my goddess. I thought she was the most beautiful creature to ever walk the earth. I wanted to be just like her. I used to say ‘Mum you’re so pretty/clever/wise/strong’ and she would say ‘ No, I’m not. I’m hideous, but you’re beautiful’. I know she intended this as a compliment, but what she didn’t realise is that all I wanted was to be like her.  So I didn’t hear the compliment, instead I mimicked her. I think most children mimic their parents. It is how we learn. I told myself and the world that infact I wasn’t pretty, I wasn’t good or clever or successful. I never want you to feel like this. There is nothing to be gained from self-hate. Of course I hope you won’t be arrogant, put others down and make this extreme. But we can still be kind, polite and loving to others whilst acknowledging our own worth too.

So there it is our first rule. I hope it will be one that we stick to and make a reality. I hope that you love yourself and it doesn’t take you thirty years to learn to do so.

Lots of Love

Your Mumma x

 

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Trying

Again I tried, my head’s pounding words won’t flow and I’m forcing my cold fingers to type. I am in so much less pain, my epilepsy has retreated, it’s really very much OK. But I still feel weak. Much weaker than that strange time I now know as ‘before’ (I learnt about TMS and Mind-Body Syndrome). 

In the land known as ‘Before’ many things were worse, but a few things were ‘better’.

Things which were worse include, but are not limited to;

  1. PAIN
  2. Seizures
  3. Anxiety
  4. Confidence & self-belief
  5. Gratitude

Things that were better were:

  1. Energy Levels
  2. General fitness

Clearly, when you have spent as long as I did M.I.A lying flat on my back, barely moving, fitness is going to be an issue it’s hard to maintain muscles lying down. So mine withered away, not that there was much to wither in the first place! But the little there was went and I have since been steadily trying to rebuild it.

I’ve never been a fan of gyms, finding concrete blocks and 80s dance anthems, somewhat depressing. I don’t find it easy to motivate myself to get into one, not to mention the vast sums expected for the honour of membership to these concrete establishments.

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What I have always loved though it being outside, playing in the elements, having FUN, dancing like a nutter and tricking myself into getting fit by accident! Watersports, Zumba, Yoga, Qi Work, Hula Hooping and combinations of these are where I think it’s AT! Having had alot of different teachers and been to many classes I’m quite picky now  but when I find something I like I MEGA-TIMES-LOVE it and will go to every session I can.

I am movement lover

I am movement lover

Recently I went to some Aerial Yoga – if you think that sounds good, it’s WAY better, it’s sock-rocking-awesome – I loved it – except one small hitch, it made me incredibly motion sick and bought on a pounding headache that lasted the rest of the day. So with a sorry heart and a final swing in the hammock I decided perhaps it’s just not for me. At least, I thought that until today I went to a new Qi Gong class and within the first 10 minutes I started to feel the same motion sick feeling overwhelmed me, I pushed on and tried to stay but after 20 minutes the room spun, I thought I was going to pass out and I threw up outside (lovely)and I was mega-fainty-pale. This time both my feet had been firmly on terra firma, how could this be motion sickness?

woop

Tears sting my eyes. I’m tired with the effort of working it out. What’s this then? My head’s still pounding even though it happened hours ago now. I wonder if this is some sort of TMS, a sort of hangover warning me off exercise. Any ideas? Any blog-readers had this? I’ll work it out, perhaps a smaller class, perhaps something else……………What I know now is that this is not eternal, it is not defining, I will get fit again. I will I will I will.

embrace

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Use Your Voice: The SUDC Challenge

Hello! Right so this is a type of blog – post I don’t normally do, but yesterday I read a call for help from one of the bloggers who first inspired me to start writing. The Progressive Parent. A lady I’ve never met, who lives on the other side of the world but who, without knowing it, has changed my life and helped me find my path through many challenges. Her courage and bravery, her vulnerability and determination inspires me and so I thought it only right that I answer her call.

Unless you’ve been living under a rock you might’ve noticed that the web has recently been literally flooded with buckets of ice for ALS. That campaign has raised over a staggering £100 million dollars. That’s fantastic and I hope people find a cure for it soon. In my opinion however, enough is enough, there are many other medical causes which also deserve attention and don’t waste water during some major global droughts (but I won’t start on that!)

So with this in mind The Progressive Parent has started her own campaign: Use your voice: The SUDC Challenge to raise awareness and funds for SUDC (Sudden Unexplained Death in Childhood) to which she lost her son Patrick . It is a truly terrifying and little-understood but increasing cause of death. Perfectly healthy, happy, well children over the age of one year die. Suddenly for no known reason.

credit: The Progressive Parent

Very helpful info pic. credit: The Progressive Parent

Now I am not a parent yet, but I very much hope one day I will be. I have several (god)-daughters, I have worked as Nursery nurse and, for someone without children, my life is very full of small people! I adore them and put simply, SUDC strikes fear and horror into my heart.

So this challenge is similar to the icebucket, excpt it takes the phrase ‘use your voice’ very literally and asks you to sing and talk. It’s simple you record a song that you sing to your children, with children or one you were sung as a child, any song about, to or for children.

You donate what you can and nominate three friends who have 24 hours to post their video. I really and truly cannot sing. The Progressive Parent’s song is a thing of beauty and I really can’t compete.When I rock the babes in my life, I hum to them, I whistle and I mumble so as not to deafen their little ears with my screeching. I can’t carry a tune to save my life. But I have a voice and I want to use it so I thought instead I’d read a poem and hope that I might encourage some other non-singers to use their voices too.

I can't work out how to embed the video here so this is my link to it!

I can’t work out how to embed the video here so this is my link to it!

If you enjoy my blog then I ask you to take part too. I’m doing this challenge in part to give The Progressive Parent a web-hug, for SUDC, and also to raise awareness of some other causes close to my heart;

  • Parkinsons for my Dad who only knows the lyrics to one song and sung it to me all through my childhood and still occasionally sings it in the kitchen when the mood takes him, normally in a dressing gown, spilling tea and spinning my mum around- I was going to try and sing that but it makes me cry so it’s better as a background while I talk!
  • Mental Health (Suicide, Depression, Anxiety, PTSD) for myself and my many great friends who live with this.
  • Epilepsy for all those who found this blog through epilepsy

If you do take part for other causes as well as for SUDC please remember to use the tags #singforsudc and #useyourvoicechallenge and the link (http://www.sudc.org/GetInvolved/Donate.aspx)  in your posts. If you choose to use your voice for an additional cause, please mention SUDC in your video, and when you nominate people to use their talents for what they love, ask them to mention your cause, too- that way, everyone can benefit from additional advocacy.

So there it is. Use your voice. Donate, and nominate your friends and especially parents, to do the same.

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