Tag Archives: PANDAS

We Run Because We Like It – by Amy Dear

I suffered post-natal PTSD after my first son was born. It was a fairly rubbish birth, which left me both physically and emotionally scarred. I was very unhealthy afterwards (having gained over 6 stone during the pregnancy) and was left anaemic, exhausted and with an awful lot of stitches!

I hated my appearance – hated feeling so ill. I’d suffered body image problems before pregnancy so I was an emotional wreck at the ‘New Me’. After the usual 6 week check, I decided it was time to try the old ‘get back into shape’ routine … but then when my son was 4 months old, I suffered a Pulmonary Embolism. The embolism (caused by a blood clot that had lodged itself in my lung) had left my body weaker than ever. It left me with breathing difficulties and chronic chest pain, which meant simple things like walking were completely exhausting. I started not eating enough, in order to lose weight, which failed – it just sent my body into panic mode and made me feel lower than ever.

I fell pregnant again soon afterwards, and with hormones taking what little strength I had left, my health and emotional state were at an all time low.

Two months before my youngest was due, I saw an advert online for a local race. A half marathon, at the Eden Project in Cornwall. I have no idea why it appealed to me – I was still overweight, still unhealthy, still struggling. But something in me though ‘That sounds really hard. I bet I could do that.’ So, while 7 months pregnant in March 2014, I signed up for the October race. And when I’d gone through my second labour (also traumatic, thankfully less scarring), I started training.

Training did not go as easily as I’d hoped. I was not good – short legs and bad lungs do not a good runner make. I struggled to run for more than 2 minutes at a time. But at the same time something drove me – a need for something that was ‘mine’. Something that didn’t involve being a Mum, or being anxious. Something to distance myself from the unhealthy, unhappy person who’d suffered two traumatic births. I felt that I’d been weak (not true I now realise!) and I needed something to make me feel strong.

So I ran in circuits around my tiny village, plodding along in maternity joggers and a T-shirt I borrowed (read:stole) from my partner. I ran at night so no-one would see me. I cried more than once.

Eventually, slowly, I could run for 5 minutes. Then 10. Then suddenly something changed – I was running in the daytime, jogging though the woods behind our old house, or along the coast beside the sea. I was breathing in deep lungfuls of fresh air. I was smiling at people as they passed, enjoying being outside, alone, unencumbered. Once another runner high-fived me as I ran uphill, and the indescribable feeling of acceptance made me feel like I was flying.

I was still slow, I was still above my target weight. But I felt strong. I felt unstoppable.

With a few weeks to go to the big race, I was searching for inspiration when I found a poem online. It was written by Charles Hamilton Sorley (1895-1915), a Scottish soldier in the First World War. He wrote a lot about how running gave him freedom – something away from reason or purpose. He, like me, enjoyed running in the rain. But it was this one that gave me chills.

The Song of the Ungirt Runners

We swing ungirded hips
And lighten’d are our eyes,
The rain is on our lips,
We do not run for prize.
We know not whom we trust
Nor whitherward we fare,
But we run because we must
Through the great wide air.

The waters of the seas
Are troubled as by storm.
The tempest strips the trees
And does not leave them warm.
Does the tearing tempest pause?
Do the tree-tops ask it why?
So we run without a cause
’Neath the big bare sky.

The rain is on our lips,
We do not run for prize.
But the storm the water whips
And the wave howls to the skies.
The winds arise and strike it
And scatter it like sand,
And we run because we like it
Through the broad bright land.

It didn’t matter why I was running. I ran because I liked it. And sometimes, when you’ve been through dark times, finding something you like is the thing that saves you.

I ran my first Half Marathon when my youngest was 5 months old. I’d gained a new life. And yes, I’ve lost several stone – (in total I’ve now lost 100lb). But it wasn’t about the weight, not after a while. It was about being strong. It was about being determined. It was about kicking some backside, about telling the world that I wasn’t going anywhere, that I wasn’t going to be ignored.

I still run. I’m involved in a huge online running community, I have made friends through running. I’ve been privileged to run for charity, to be invited on a run for peace, to be part of a team of people hoping to run for PANDAS in the London Marathon next April. I’ve set myself goals I’d never dreamed of, and it’s even gotten me into new hobbies – if you told me two years ago I’d be doing yoga, I’d have laughed you out of the room. But I do it.

It’s not too late in life to carve out a little piece of happiness for yourself. Whatever that turns out to be – fitness, cooking, meditation, singing, dancing, crafts – there is something that exists just for you. A million other people might do it too, but it’s still just for you. I will never win any races, I’ll never get any prizes. But what I get is the feeling of sunlight on my skin as I race through a cornfield, trainers on, music blaring. What I get is watching my two-and-a-half year old son race around the living room, shouting ‘We running Mummy! We running very fast!’. What I get is knowing that, by looking after myself, I’m being the best Mummy I can.

I run because I like it.


Interview with Alex, author of Life After NICU: PTSD

Hi Alex, thanks for sharing such an honest and open account of your experience of pregnancy and childbirth.  It must have been so difficult to keep going when so much was happening to you and your family, what gave you the strength to carry on?
I found the strength to carry on because of the love I felt for both my partner and for my son. I could see that my struggles were having an impact on my partner, and he was unsure of what to do or say to help me. I knew that after all that my son had been through he needed his Mummy more than ever, and I needed to be as healthy as possible. And to be honest…I missed the old me. 
Aside from CBT and your thought diary, was there anything else you did for therapy? (I.e. art, online education courses, meditation)
Aside from CBT and my thought diary, my own personal form of therapy was writing poetry. I regularly sat down and just let my thoughts turn into scribbles on a paper about all sorts of topics involving my son, I.e little milestones be had reached in NICU. I also found that keeping his baby book as up to date as possible was a lovely way of cementing that bond if I was ever questioning it. 
What advice do you have for any of our PANDAs who are in the midst of PTSD?
The advice I would give to any PANDA member suffering with PTSD, would be to not punish yourself. It doesn’t make you weak. PTSD is usually as a result of an event that nobody should ever have to experience in their lifetime. It is a natural response. Don’t hate yourself, and believe that you will get past this. Set mini goals everyday….even if it is as simple as putting the bin out on your own or walking to the shops. Don’t try and run before you can walk. 
What advice would you give to someone who suspects they might be experiencing abnormal levels of anxiety?
If anyone suspects they are suffering from extreme anxiety, I advice them to make a note of when and where these episodes happen…in an attempt to find a pattern. Don’t think you are going crazy. Seek help, as its a lot more common than you might realise. Talk to your GP, that first step is a huge one but it will put you on the track to recovery. 
How did PANDAS help you?
The PANDAS online support group was of massive help to me. I had nowhere to turn, and like many others I didn’t want to burden my family and friends. I wanted to maintain that strong front I had mastered. I could speak to others going through the same ordeal as myself, without fear of judgement . The volunteers even took time out of their busy lives to message me privately if I was ever having a bad day. 
And finally, what positives, if any, have you and your partner taken from your experience?
The main positive that we have got from my experience is that we will never take for granted a single moment with our son, as we know how hard we all fought for this family unit. 
Many thanks Alex for sharing your story with us.  Your courage, strength and bravery truly is astounding.
If anyone would like any support or advice from the PANDAS Foundation, please take a look at the PANDAS website for the best way to get in touch: http://www.pandasfoundation.org.uk/how-we-can-help.html