A Recovery Story – by The Butterfly Mother

“Postnatal Depression recovery stories.” These were the only words I typed into my browser for weeks. My anxiety was incredibly high, I genuinely thought I was losing my mind. Instead of cuddling my son or enjoying his first smiles, I was scouring the internet for undeniable proof that I wouldn’t feel this way forever.  
 
Despite what my damaged mind was telling me, things did get better. I don’t feel that way anymore. So I’m posting my own story for any other mums who might be searching for answers now. 
 
My son was born at 1am on 27 Apr 2013 after 12 hours labour, an epidural and finally an emergency section. They had given me so much anesthetic at the last moment I became “blocked,” meaning I couldn’t move or feel anything besides my head and neck. I couldn’t hold my son for several hours, and I couldn’t feel when he was feeding.  
 
Looking back, things weren’t right from that very first day. I wasn’t feeling anywhere near the post-birth euphoria I had been expecting. But it wasn’t until 8 weeks later the cracks finally began to show. 
 
My son had just begun sleeping better, only waking for one feed during the night, but while he slept soundly at last I lay wide awake. The less I was able to sleep, the more I panicked during the day. How can I take care of him when I haven’t slept? What if I drop him down the stairs because I’m so exhausted? What if I fall asleep on the sofa and suffocate him? Of course, with these anxieties running around my mind all day I was nowhere near relaxed enough to sleep when night came around, and so the vicious cycle continued. I was lying in bed for around six hours each night, my heart racing and my thoughts spinning, until my body eventually gave in and I slept fitfully for between 1-2 hours before I awoke with a jolt, feeling sick and panicked once more.  
 
After 6 days of sleeping only an hour or two a night I burst into tears during a group I was attending at my local children’s centre. The staff were incredible, they calmed me as much as possible and called my health visitor. For the next few days she came by to see how I was, she listened to my fears and heard how I still wasn’t sleeping. I took all the usual advice – bath before bed, fresh bedding, read a book etc – but this only made my sleep worse. The pressure to sleep increased my panic and continued the cycle.  
 
I was then referred to my local Perinatal Emotional Wellbeing Service (PEWS). This is a fantastic NHS service which, sadly, isn’t available in all Trusts. Fortunately for me, Essex has it and that small team of individuals probably saved my life. Or at least kept me out of hospital. 
 
After they assessed me I was diagnosed with Postnatal Depression. I had been desperately hoping there was another explanation but deep down I knew it wasn’t only insomnia, I wasn’t eating or able to think straight either, all triggered by horrendous anxiety. PEWS liaised with my doctor (who was fairly useless, more on that in a future post) and visited me at home twice a week. Under their guidance, I found the courage to begin taking a combination of medication (a sleeping aid, diazapam for short term anxiety relief and eventually, reluctantly, an antidepressant).  
 
The medication firstly helped to get my sleep back on track. I was terrified that the sleeping tablets wouldn’t work but 15 mins after taking my first one I succumbed to sleep on the sofa and my husband helped me to bed where I slept solidly for four hours – a vast improvement from how I was. Each night I would fear the tablet wouldn’t work and each night I slept, for an increasing length of time until my sleep patterns were fairly normal again.  
 
Despite the improvement in sleep and appetite I was still suffering from anxiety attacks almost constantly. I simply couldn’t function properly. Once the drugs took some effect PEWS sent round their Occupational Therapist who specialised in anxiety management. I still think of this amazing woman as an angel sent to save me. She gave me some basic, CBT-based tools for managing fear which, with lots of hard work and practice, began to improve my mood and functionality.
 
Eventually PEWS were able to discharge me when an appointment with an NHS therapist became available. Again, I was very lucky to see a CBT therapist who had a lot of experience with perinatal mood disorders.  
 
One of the most difficult things about this illness is the slow recovery time. In my opinion, medication goes a long way to take the edge off and kickstart your recovery but it can only do so much – therapy is a vital tool for long term recovery. Through therapy I was able to begin to reroute lots of damaging negative thought patterns.  
 
Recovery was definitely an accumulative process for me. Medication and therapy bore the brunt but there were many other aspects of “self-care” which were vital to me; good, regular sleep; a decent diet; fresh air and a walk every day if possible; supplements; support from family and friends; mindfulness; books and websites like Anxiety No More. And, critically, online support.Postpartum Progress and other blogs, and Facebook groups such as PPD Chat Support have been so valuable to me. Knowing you aren’t alone can help tremendously. 
 
Unfortunately, even with these tools, recovery takes time and patience, which is the biggest challenge of all. I remember being filled with despair when I read how long recovery can take for some people but the important thing to remember is even if full recovery takes months or longer you won’t be in that acute stage the entire time. The real hell was lessened in a matter of weeks for me. After that it becomes manageable, life becomes more bearable. You feel stronger and safer. You might not be thriving but you’re surviving. 
 
Parenting is hard and I still feel overwhelmed by it sometimes. I still wonder how I’ll cope. But then I remind myself that I’ve come through the last two years so there’s no reason I can’t keep going, keep striving, keep getting stronger. I also remind myself of all the things experiencing PND has taught me. I know how to deal with unhelpful thinking, I worry considerably less, I don’t sweat the small stuff and I have much more empathy for others. In some ways, I’m stronger. I think I’m probably a nicer, less selfish person. I’m not going to ever pretend PND is anything close to a gift, but there are certainly aspects to my personality and my life which have benefited. 
 
PND isn’t fair. It’s a cruel and terrible illness. But recovery is possible. If you’re reading this and thinking you’ll never get better try to remember that everyone who has ever recovered once thought they never would. And then they did.

To read more from The Butterfly Mother, please have a look at her blog here

Do I Love My Baby? – by The Butterfly Mother

(Original Content taken from The Butterfly Mother blog)

Yesterday we had the paddling pool out for the first time. Caterpillar had a lot of fun and then wanted to come and sit with me where I was watching from the picnic blanket. I wrapped him in a towel and we snuggled down and cuddled, looking at the sky and talking about the sun and clouds, singing songs and tickling each other. Not an unusual sight for a mother and toddler, but a moment perhaps more significant to me than it would be to someone who hasn’t suffered Postnatal Depression.

At one point my son gave me what we call a “hands kiss” (a kiss on the lips while putting his little hands on your cheeks) and I almost wanted to scream with the love I felt. Screaming may seem a little extreme but that’s how it feels to me – whenever I have a wonderful moment with my son – like I’m consumed by joy and relief. Because, for a long time, it was nothing like that.

As a pregnant woman you hear much about the magical and instant bond you will feel with your baby. It’s a given that you will feel a love for them that is beyond any other emotional connection you have ever experienced. The love you feel for your partner or parents will simply pale in comparison. You’re told that yes, parenting is hard work but the love and happiness you get from your baby will make everything worth it.

I couldn’t help but be excited about experiencing this completely new kind of love. I already felt very bonded to my bump and loved the magic of feeling my baby move inside me, I couldn’t wait until the moment I saw him for the first time and felt that lightening bolt strike me.

The reality was a little different.

Caterpillar was born by emergency section when his heartbeat dropped dangerously low after 12 hours of labour. When he was born they had to whip him off to suction mucus out of his throat. I was unable to feel or move any part of my body besides my head. Twenty minutes later I laid eyes on him for the first time. He was a metre or so away, and pretty blurry as I’d had to remove my contact lenses before the surgery, and I couldn’t hold him as I was unable to feel my arms.

He was so cute, wide-eyed with beautiful skin, and undoubtedly mine as he shared so many of my family’s features. I was so relieved to see he was okay after spending the last few hours convinced he was dying. There was relief and familiarity…but no lightening bolt. No overwhelming protective instinct. No “instant bond.” No euphoria. I just felt tired and nauseas.

For the next eight hours I drifted in and out of sleep, vomited several times, and waited for my body to come back to life. I was vaguely aware of Hubs holding a small bundle in his arms next to me. The next morning when I was finally able to hold Caterpillar I sobbed and told the nurse I felt I was seeing him for the first time.

Whilst in hospital I mainly felt anxious and useless. I assumed motherhood would come naturally but it didn’t. My milk didn’t come in and I couldn’t get him to sleep much at all. Aren’t new mums supposed to want to hold their baby constantly, and never want them to leave their sight?  But when the nurses offered to take him for a couple of hours to allow me to rest I felt only relief.

Back home we began to find our groove but my emotions were all over the place. I would cry every night around bedtime as I knew we’d be up every three hours, if we could get him to sleep in the first place. None of this is unusual, this is how life is during the first couple of weeks with any newborn but in addition to the usual sleep deprivation and steep learning curve I was dealing with a terrifying internal struggle: do I love my baby?

That awful, paralysing, guilt-laden thought kept whispering across my brain with increasing frequency until it got so loud it was all I could hear. I don’t think I’m enjoying this. What’s to enjoy? I’m just tired and drained. I thought these were meant to be the happiest days of my life. He’s so adorable, cuddles are nice but is this really my life now, forever? Oh my God, why am I thinking like this? Do I not love him? Is there something wrong with me, I should be happy to take care of him, shouldn’t I?

I cared about him a great deal, I found him beautiful, and I felt duty-bound to protect him – but that was the thing, it felt like duty, not overwhelming, uncontrollable love.

I believe it was these few thoughts about how I felt about my son and my new life as a mother than sparked the anxiety attacks which led to my PND diagnosis. I wish so deeply that I had known then what I know now.

That not everyone feels an instant, overwhelming bond with their baby. That the first few months of your child’s life may not be the best time of your life. That newborns don’t give much back, but they sure take a lot. That just because your bond isn’t instant it doesn’t mean you won’t have an amazing relationship in the future. That different people are suited to different ages and areas of parenting.

I wish I had known that I didn’t have to worry, that I would fall in love with Caterpillar. That as he grew, and as I got my anxiety under control, I would grow to love and enjoy so many things about him. That slowly, eventually, I would begin to feel overwhelmed by that love. That the love you feel for a child is unique but maybe not in the way you imagine; it’s complicated and conflicted and huge, sometimes so big you think you might explode with it.

I wish I had known that one day, two years later, I would lay with him on a blanket in the sunshine and want to scream with how much I loved him.

Project Me by Hannah Tubb

My name is Hannah I suffered from post natal depression/anxiety and PTSD. My children are three and seven. I still suffer from anxiety. Sometimes I control it sometimes I can’t.
Sometimes I see a light at the end of the tunnel, sometimes I don’t.
I’ve had counselling- some has worked, some has not.
Sometimes I accept my life as it is and I’m grateful for what I have – sometimes I feel like I have a neon sign flashing over my head saying ‘crap mum’ ‘crap wife’ crap everything. This happens a lot. I wish it didn’t because I beat myself up for that as well!

Today I woke up with an overwhelming list of projects in my head that I have to complete or get started on.
My daughters birthday party and then a couple of days later her birthday,
A promotion at work and subsequent responsibilities.
A list of tasks that I need to get on top of in my various volunteering roles at PANDAS. And then there’s my ,ten-year-wedding-anniversary -spa-break-must-look-good-in-bikini’ stress!
The counselling course I’m planning for,
the yoga course I’d like to take,
the perfect organised housewife and baking, crafty, happy, stress-free mum I aspire to be.

My husband suggested I strip everything back to the absolute basics – but I want it all – so what are the basics?!
Besides, if I strip everything back won’t I just be failing at all the things I’ve dropped? I feel as though I’d be letting myself down and be seen as flaky – what is this obsession with wanting to be seen as someone who is busy all the time? because I might be busy but I’m spreading my self so thin that I don’t feel like I’m actually succeeding at any one thing!
So, today I’m starting a new project.  Project ME!
I’m going to strip everything back to the basics – my family, me and work (because I have to).
I need to work on my foundations again before I can start building on top of them.
I need to work out what makes ME happy, (and that means ME not what I do because I want to be seen in a certain way by others.)I have lived my life like that for so long I think it will be hard to prize the two apart.
So, that is my first task for project ME – make a list of things I love doing, and make time for those things!
What things would you add to your list?
To be continued . . .

My Story by Carly Richardson

Before I start I have to say how happy but nervous..scared and emotional I was about sharing my story. Its something that has all been locked up in a box at the back of my head for so long now I almost don’t think about it anymore. But I think that if just one person can gain something from reading this, then it’s absolutely worth me emptying that box at the back of my head again and throwing it all onto paper. Here goes!

I guess I should start back in 2012 when I was pregnant with our 2^nd son. It was a very straight forward pregnancy in most ways, I worked through it upto about 35 weeks when I planned to take maternity leave early to spend some time with our first son who was 2 at the time. My job had become everything prior to this, I had started a new job in late 2010 and had totally thrown myself into it working 5 days a week full time. When I went onto MAT leave though things just didn’t feel ‘right’. I suddenly didn’t feel any excitement about anything, whether it be preparing for the new baby or spending time with my son in the lead up to the birth. I also started to have trouble sleeping which really wound me up because I love my sleep! Things took a rough turn when I happened to read a news article about a lady who had developed psychosis and killed her 2 babies. I was absolubtly devastated by the story and before I knew it I had become obsessive about it. I was looking for it on the internet, watching the news stories about it and thinking about it all the time. All I could think was ‘what if that happens to me’? ‘she’s had her 2^nd baby which I’m about to do, so its bound to happen to me too’.  Before I knew it I had totally become consumed by this poor lady’s nightmare and terrified myself with the thought it could happen to me too.

From here things deteriorated fast. I woke up one night from a nightmare in sheer panic, crying and sweating totally terrified I would lose my mind and kill my son. I woke my husband who was completely taken aback, as up to now I had hidden all of this from everyone and kept it to myself. I told him my fears and he tried his best to assure me I would not hurt my son or our unborn baby, it was just a nightmare that had really got to me. I went back to sleep for a while hoping I would wake up feeling better, which I did for a period. I woke up feeling okay and tried to do the day as normal, my husband went off to work and I set off to nursery with our son. All I could think though on the journey was ‘what if I deliberately crash the car to kill us both’, what if I lose my mind on the way to nursery’. I managed to drop him off, but on the way back home it got too much and i drove straight to our doctors surgery. I didn’t have an appointment, I was just desperate for a medical professional to tell me I was okay and I wasn’t crazy. I remember trying to keep calm but before I’d reached reception I broke down in tears. I said to the receptionist through my tears and snot that I needed to see a doctor as soon as possible, could she please help me. She looked me up and down (I was 37 weeks pregnant at this point) and said ‘come back in an hour and we will fit you in’. And that was it. No warmth, no compassion, nothing. I often think if I had been that receptionist could I have spoken to a clearly terrified heavily pregnant lady the way she did? No, never in a million years! So off I went back home for an hour, stupidly I didn’t even phone my hubby to tell him, I just led on the bed and cried until I had to go back to the surgery.

I was seen after about an hour of nervous nail biting and trying to keep the tears at bay in the waiting room. I sat down with the GP who was male locum doctor I had never met before. I immediately burst into tears and broke down in front of him. He just stared at me and didn’t say a word. He told me he thought I had depression, but because I wasn’t suicidal it wasn’t severe depression. I begged him to help me, I don’t know what kind of help I was really looking for I just wanted him to say it would be okay and possibly give me a magic pill to take the pain away. I also said I was not sleeping but his reply to that was ‘you’ll sleep eventually’. The only outcome was an appointment with the midwife as she may be able to suggest some relaxation techniques. He then went onto inform me that although he had dealt with depression and pregnancy before as separate things, he had never dealt with them together. Wow, thanks for that! That didn’t make me feel worse at all…

I told my hubby what had happened and he came home from work. He was totally bemused and angry at the way the GP had treated me. He came with me to the midwife appointment and explained to her what had been happening (I was so upset I couldn’t even speak). She came to the conclusion I was just experiencing some anxiety in the lead up to the birth and she would put me in touch with the Surestart Centre’s befriending team so they could help me once the baby arrived. Totally not what I wanted to hear, I just wanted her to say it would be okay too, but of course she didn’t. At this point I had not told anyone but my husband about the scary thoughts I had been having about my son. That night was another sleepless one, so the next day my hubby phoned the docs and told them we needed an appointment immediately. Off we went and saw Mr Compassionate again. This time I felt so much worse and was so much more sleep deprived that I told him about the scary thoughts and said I just wanted the baby out so he could be taken away from me and kept safe. He decided I needed to be seen by the emergency mental health team, so I should go home and wait for a phone call from them. I’m pretty sure that day was the longest day of my life. I wasn’t eating either so felt like utter crap. I remember my husband trying to take my mind off things so suggested we watch the Inbetweeners Movie on DVD…needless to say I couldn’t even stifle a laugh! No phone call came either so I was in total limbo and my anxiety became worse as I was convinced they would section me. I also asked my husband to never leave me alone with my son in case I hurt him. He tried his upmost to convince me that would never happen but I was not for listening.

Finally the next day a phone call came..but not that one I was waiting for. It was a social worker from the child protection team about a report from my GP over thoughts of harming my child. Her exact words to me on the phone were ‘do you have plans to kill your son’? I insisted that no i didn’t have any plans to do that, I was just terrified of the ‘what if’ that happened. She seemed satisfied and that was that. Until the next day a card was popped through the door saying ‘social services have visited. Please phone us urgently.’ Friday night; this was at 6pm. So I spent the full weekend in trauma over this horrible horrible card we had received. In the meantime the mental health team came out and helped me immensely. They were actually a little confused as to why they had been called, as they said it was clear i was suffering from severe anxiety. Just to be told what was happening to me was a huge relief. I got through the weekend pretty well, we went out for the day and I did feel an awful lot better, but still had the feeling of dread about the baby being born. They referred me to a psychiatrist who prescribed anti depressants and some diazepam for the really tough times. He also said id be referred for CBT.

When I spoke to social services they said they had called round to do a home visit due to the report from my gp. We arranged for them to come back the next day. Needless to say neither I or my hubby got any sleep that night. Although he didn’t say it, i could tell he was as frightened as I was at the mention of social services being involved. The social worker arrived 2 hours late for the appointment and said he was there just to follow up the report and see if they could offer me any support. He said he was very satisfied my son was happy and well cared for, he even apologised for any distress caused. What did piss me off though was his parting comment to me ‘you stopped watching the news now then after all this’? Yes, I had stopped watching the news, but was I still terrified that I would have the baby and possibly kill him too? Yes, absolutely.

Skip a day and unbelievably I had given birth to a healthy baby boy weighing 6 lb 4 oz. I had gone into labour spontaneously at 38weeks the day after the social workers visit. I absolutely believe that he came early to help his mummy out. I have a faith in God and I prayed everyday for it all to be over and in some ways my prayer was answered as he came early and very quickly, which was the best thing for me at that time I think, as a difficult delivery may have pushed me over the edge. I was only just on anti depressants at this point, so they had not kicked in fully when I delivered. I had hoped to go home straight away but they had to keep me for one night due to thick meconium during delivery. I was still very scared of being on my own, so to be left at hospital with our newborn was terrifying as my hubby wasn’t allowed to stay with me. I remember staying awake all night just sweating and panicking that we would get home and I would smother him. I don’t know where that came from but it was a very intense fear really scared me. We got home and the first few weeks were tough. I thought about packing my bags and leaving at one point. Just disappearing on my own and leaving the boys with my husband, as the scary thoughts were destroying me and I didn’t understand how I could have such thoughts regarding my own children. We muddled through, with me actually coping really well with hindsight. I was very emotional but I was getting through and slowly starting to feel a bit more like myself.

Before we knew it, our newborn was 10 months old and I was still taking the anti depressants, which had really taken the edge off the panic for me. As I had never experienced mental health problems before, I had no idea the length of time I should be taking them or when i should say i was ready to reduce the dose. I went for my review and saw a new gp. I told her I had been feeling okay so she told me to drop the dose. I remember being a bit wary but thinking well she knows best so i should do as she advises. Naive of me maybe, but I didn’t think it would get bad again, I thought I was ‘cured’. Obviously the reduced dose did nothing for me and I ended up back to square one with awful intrusive thoughts and just the feeling of sheer panic 24/7. Off my own back I went back upto 20mg of my tablets and went back to the gp to tell them I had done this. I saw yet another gp and he stressed the importance of going off my own feelings and listening to myself rather than others. By this point I had not yet heard anything regarding the CBT I had been referred for so I asked the GP only to be told there was no record of a referral on my file. He also asked me if I had been seen by the mental health team again about my postnatal depression. Postnatal depression?? I didn’t have that did I? This may be my own ignorance but I was genuinely taken aback as not one professional had told me i had PND. I thought that this was because i was put on the anti depressants before the baby was born, I was ‘safe’ from it and it wouldn’t occur. The gp told me i was always going to get it because I had prenatal depression. I was really taken aback, but at the same time relieved to have a name for how I was feeling rather than just being an anxious mother.

Not surprisingly I received a CBT referral letter within 2 days of that appointment. I was given a place in a fantastic group especially for mums with pnd. It was a 6 week cbt course with 2 other mums just like me. For the first time in a year i felt normal. The relief I felt from meeting other mums who also suffered with this awful illness was phenomenal. The therapist was an amazing lady who knew the subject of postnatal depression inside out. She was not phased at all by some of the irrational fears and thoughts I shared with her and made me feel like I could be myself again. I cannot recommend cbt enough, it gave me my life back.

That was 3 years ago and I have since had another baby in may 2015….ANOTHER boy! I still take my anti depressants and was so lucky to receive fantastic treatment this time under the care of the specialist mental health midwife. I have friends who understand me and a much greater knowledge about anxiety, depression and intrusive thoughts. They were my biggest battle and for so long made me think I was a bed person because I was having them. I now know that everyone had intrusive thoughts, even people who haven’t been diagnosed with a mental health problem. It was a lot to get my head around, but i now know that if i have a fleeting thought about throwing my son out of the window it DOES NOT mean I am going to do it. I am still on my journey to conquering my anxiety, but I am at peace with that now and try to control it without letting it control me. I want so much for womens mental health awareness to be given more attention. I know I have done a bit of GP bashing in this blog, but i now realise they only have a limited knowledge on mental health so are working with that they know. I just hope that if a woman walks into a GP surgery feeling how I felt, she will be given the information and resources to get on the road to recovery a lot quicker than i did. Never in a million years did i think i would now have 3 boys aged 5, 3 and 4 months and be muddling through as we are. We have some pretty crappy days (my middle son hid my car keys last week and I cried on the hallway floor out of sheer desperation to find them). Without the awful days I wouldn’t appreciate the great days where I’m feeling proud of myself for kicking PNDs arse and actually dropping my son to school on time. My husband is amazing and now seems to ‘get it’. He knows when im going through a bad spell and acts as the ears for listening to all my ‘what ifs’, which, don’t sound as scary when I say them out loud!

I hope you enjoyed reading this and gained some form of encouragement from it.

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

Life After NICU: PTSD by Alex

Pregnancy. Labour. Motherhood. Every word fills you with hopes, dreams and expectations of what your experience is going to be like. When plans go off the rails in a spectacular fashion, it will be a challenge ensuring that you don’t too.

November 13th 2013, the day that changed mine and my partners lives forever when we found out that we were expecting our first child. Like every Mummy and Daddy we were a mixture of excitement and terror all rolled into one! We stocked up on pregnancy books, vitamins and started thinking about baby names. But that all changed at 8 weeks pregnant…

I began bleeding heavily. Suddenly the questions of “would we have a boy or a girl/who would they look like”, were replaced with “was I miscarrying/was our baby going to survive?”. The hospital thought I had a uterine abnormality, which would subsequently significantly raise the chance of miscarriage, late miscarriage, still birth and premature birth. From that moment on, the fun and excitement of pregnancy was snatched away and would never come back…and was replaced with anxiety and fear. I will forever be bitter about that.

The pregnancy progressed slowly but surely, and it seemed that every appointment threw up another problem and worry to contend with. At 20 weeks I was diagnosed with hydroenpherosis , swelling of the kidneys. And at 26 weeks we were told that our baby was significantly smaller than he should be, and wasn’t even reading on the chart. Growth scans were arranged and we just hoped and prayed that our little one would grow bigger and stronger as time went on.

15th May 2014. At 29+6 weeks pregnant, our little man went quiet. I didn’t feel a single kick or movement for over 12 hours. I found myself in denial…he would be fine in another hour. The hours ticked by and by 11pm my partner was urging me to get checked out. So off to the hospital we went.

We can’t have been there any more than an hour and it soon became apparent that this was an emergency. Our little man’s heart rate was ominous, slowing down to virtually nothing, he had reduced liquor and was diagnosed as having IUGR. He was dying inside of me. We were rushed to theatre, where I was to have an emergency caesarean.

May 16th, at 1.49am our gorgeous little boy entered the world. I felt numb. This wasn’t how we had dreamt it. Daddy didn’t cut the cord, Mummy didn’t get first cuddles and first nurse. Instead we had the haunting silence. Our son was being rescuscitated. In those moments I prayed harder than I ever had in my life, to Jesus, Allah, Buddha…anyone who would listen to me. Our boy just couldn’t die.

After what felt like an eternity, we were able to have a glimpse of our little boy before he was whisked away to the Neonatal Intensive Care Unit (NICU). I was a broken woman. One moment I was pregnant and the next I had my baby ripped away from me, along with all of our hopes and dreams of our perfect delivery. I couldn’t keep him safe anymore, like his Mummy should be able to do.

I was taken to a ward full of mothers and their babies. All around me I watched as mothers nursed their little ones, when all I had was a breast pump- which I would chain myself to for the next four months. I felt as though others were looking at me, and judging…”what has she done wrong”. My arms were physically aching to hold our son, knowing that instead he was curled up in a little box all frightened and alone without his Mummy. I cried until I had no tears left.

12 hours later we were able to see and hold our son properly for the first time in his life. My reaction shocked me to the core. All the bleeps and whistles, the heat from the incubators, the blue lights from the UV machines…it was overwhelming. I looked at our tiny 2lb 15oz son, tracking all the wires and tubes coming in and out of his fragile little body. His chest heaving for breath, his little face wincing in pain.

As the nurse placed our son on my chest I was petrified. My hand was the size of his tiny little torso, his eyes were almost fused shut. He should have still been inside of his Mummy, all safe and warm. What if he hated me? Or worse…what if he didn’t even know I was his Mummy anymore? I felt like I had failed before I had even begun, and that our Mother-Son bond was shattered beyond repair.

Looking back now, I know that subconsciously I was scared of becoming too close to our son out of fear of losing him in the early days. But at the time I felt like a monster. I felt like running away, pretending that none of this was happening , starting all over again…and this time I would do it right. I wanted to curl up in bed and shut out the world.

All I could do for our son was express breast milk for him, so I did this up to 10 times a day. It was the only thing that I could do that made me feel like a Mummy. Seeing doctors and nurses changing him, feeding him, looking after him, knocked my confidence as a mother. How was I supposed to be good enough to do all of these things? I had to ask permission to hold my own son.

It quickly became clear that I wasn’t coping at all. I was sad, I was angry, I was in denial…All in the same day most of the time. I looked at other families in envy of what they had. Walking out of the hospital doors with their babies, whilst we were camped out next to his incubator day after day. I dreaded going into that unit, it made me sick to my stomach just being there. I avoided holding my son, doing his cares and spent most of my time crying in the toilets.

Leaving our son every single night in that hospital full of strangers, has broken a piece of my heart to the point where it will never be the same again. Every night without fail I would hysterically break down in the car park, and felt physically ill thinking about him being all alone in pain wanting his Mummy and Daddy.

At home I would hear the sound of the monitors beeping and buzzing, I felt constantly on edge and unable to relax at all. I would lie in bed clutching my phone, petrified whenever the phone rang in case it was bad news.

My emotional heartbreak was also masking some serious physical problems I was experiencing post birth. With a dangerously high temperature and pulse I was rushed back into hospital, where I was diagnosed with a septic womb infection. If it had gone untreated for much longer I was told I would have experienced multiple organ failure. Another kick in the teeth for our family.

I had always suffered with low confidence for all of my life, but having an extremely premature baby rocked me to the core. After 7 long weeks our son was finally able to come home with us, and I thought that things would finally begin to get back to normal. With all of the free time now on my hands as a full time Mum, I began to process the enormity of what we had all been through as a family. How close we had come to losing him.

I knew almost straight away that things weren’t going to be as easy as I had hoped. I was constantly feeling sick with anxiety, having severe headaches, heart palpitations and was constantly sick with worry that our son was ill and that we could still lose him.

I was having horrible flashbacks and nightmares, and was constantly consumed and tortured by all of the what ifs? What if we hadn’t gone into hospital that night? Motherhood wasn’t all sunshine and rainbows, all smiles and giggles like I thought it would be. I was hurting.

With the support of my partner, I sought help from my health visitor and GP. It was a massive step. As a new mother, like most, I had the pre conception that asking for help and admitting your struggling was a sign of weakness. That it made me a bad Mum. But now I know that it made me the best Mum I could be. My son, and my partner, deserved the best Mum and Fiancee possible, and at the time that was far from who I was.

I was referred for cognitive behavioural therapy, where I could talk through my thoughts and concerns with someone who wouldn’t judge me, and someone who would sympathise and understand. I kept a thought diary, a no holds barred account of my everyday life. I was diagnosed with post natal anxiety, low confidence and post traumatic stress disorder. It was by no means a quick fix, but was a massive step in the right direction.

Almost 10 months on from the birth of our son, I feel like pieces of the old me are coming back. I am by no means back to the old me, but I am slowly and surely accepting what happened to us all. I am now at peace with the premature arrival of our son, and accept that it was not as a result of a fault on my part. But, a piece of my heart will be broken forever at what we had to witness our son going through.

Worries about our Mother-Son have totally vanished. Our son is my little shadow, and he lights up my life every single day. I am so lucky that I had the inner strength and courage, and the support of my partner to seek help to ensure that I was the Mum that he deserved.

Motherhood is definitely not what I expected it to be. It is a massive rollercoaster, that I don’t think will ever end. If you are struggling, please speak out and seek help. No one will judge or think badly of you. Take time to heal, and regardless of what I once thought, super Mum just doesn’t exist and that’s ok. It is ok not to be ok.