We may be small in numbers but we are international now

What a week this has been after months of thinking last week I took the plunge and started the Mums help mums network. The interest and kind comments have been amazing and I think it's all really helped me. I haven't stopped smiling with how much interest has been generated. Bad or sad things happen to us all at some time in our life but what I am trying to achieve is to use our own negatives and change them to positives by using the sharing of our own experiences to help and support one another. 1 in 5 mothers suffer from Postnatal depression and keep it to themselves. It is so difficult to ask for help or say out loud that you are struggling. I was the master of denial and facing my own depression but hope I'm over the worst now and more self aware to keep my mental health well. Hopefully the Mums help mums network page and my blog will helping someone.

The Priory

The Priory

When I had my breakdown I was fortunate enough that we had private health insurance the hospital I was admitted to was to be The Priory in Bartle just outside Preston.

The drive there on the day I was to be admitted felt like an out of body experience. We drove in almost silence for the journey apart from my occasional pleading that there was nothing wrong with me, I was fine, it was all just a misunderstanding.

The hospital was in the middle of nowhere, and as we approached the entrance it felt like we were going on a weekend break. The building looked like it was a Spa or luxury hotel. We parked up and walked around to the entrance. I wouldn’t let Kenny get my suitcase out of the car as I my mind if we took it in with us I was admitting that there was something wrong and that I would be staying. Even though my admission to a psychiatric hospital was imminent I was still suffering from a major case of denial.

We signed into reception and were given a brief tour of the building, we were shown the communal areas, which included a large conservatory with a pool table, games, TV DVD player and a seating area. At that time there were a lot of people in there, it was noisy and I remember feeling petrified and thinking to myself that I will never leave the safety of my room.

We made a coffee and were then taken to the “ward” and shown my room. It didn’t look like a ward, there were no heavy locked doors nor were there bars on the windows, it was a long nicely decorated hallway with could have been mistaken for any hotel corridor. There was a pantry room which was in effect a small kitchen, with a fridge, dishwasher, coffee machine, kettle and toaster, cutlery, plates, cups etc. There was fresh bread and biscuits and we could help ourselves to drinks whenever we wanted. We were shown to my room which would be number 3 for the time being, it was near to the nurses’ station and opposite the room which was used for medication time.

It was a lovely room lightly decorated very bright with a TV, dressing table, chair and a modern bathroom and shower with touch controls. I could almost pretend that it was a hotel room apart from the glass observation panel in the door brought me crashing down to earth. We were given some time alone and whilst Kenny was getting ready to leave I broke down. I started crying and pleading with him. “Please” I begged, “I don’t want to stay here, don’t go, take me with you” I cried. Kenny hugged and kissed me, told me he loved me and left.

Later that evening a member of staff brought my suitcase into my room and went through it with me and confiscated anything which I could potentially harm myself with which included my dressing gown belt, IPod ear phones, emergency essence and my wonderful Wife badge.

I would be checked by a member of stay at regular 15 minute intervals for the time being and this would include throughout the night. That night I was given my anti-depressants at 10pm together with sleeping tablets and anti-anxiety tablets I slept deeply that night but woke feeling groggy, heavy headed and very frightened.

I forced myself to get up, have a shower and get dressed and built up the confidence to leave my room and go downstairs for breakfast.

I ate little and quickly and escaped back to the safety of my room.

A member of staff came to my room to speak to me about the problems I had been encountering and I was told that after lunch I would start in group therapy sessions with the other resident patients who were having treatment for depression.

The majority of patients at the Priory in Preston were being treated for either general psychiatry (which covered depression, anxiety, stress, post traumatic stress, OCD, Bipolar disorders, attention deficit hyperactivity to name a few) or addiction, primarily the addiction patients were alcohol dependent.

These two categories of type of patients would later be known by myself and other patients as ‘the pissed off’s and pissed ups’.

I was given a timetable of therapy and was told that Monday to Friday 9.30am to 4pm I would have to take part in all the sessions. The sessions varied in topic. Some of the session would be for depression, anxiety, stress, emotions, self-esteem, personal development and art therapy. I would also see a psychiatrist one on one 3 times a week (this was known as the ward rounds) the doctor would monitor our progress and adapt our medications if need be.

I was dreading group sessions I really didn’t think it would be for me the whole ‘hello my name is Jo and I’m a fuck up’. But I had been admitted now and part of the treatment was to take place in all sessions so I had no choice. That afternoon and entered my first group session.

Being a resident / patient in a psychiatric hospital was kind of like being in big brother but without the cameras. You are put in a situation with strangers that you know nothing at all about and suddenly you have to share your life, honest innermost feelings that even your closest family and friends never knew. It was exhausting emotional and physically. The first session I didn’t really contribute but listened to others stories but would be expecting to contribute as it was all about talking therapy and sharing. When you are in such an intense full on situation and are sharing your private thoughts and feeling with others you quickly become very close to one another and we bonded quickly as a group and became very close to the other patients in my group and made some very good friends I remain in touch with to this day.

It’s funny when I first went to the Priory I didn’t want to be there but by the end of my 4 week stay I didn’t want to go home back to my life and reality.

I met some exceptional people, staff and patients and learnt a lot about myself.

The patients were from all walks of life, young old, professionals, everyday people, who all had one thing in common their inability to cope with life any longer.

I was extremely fortunate to be able to attend a private hospital. I do not think my experience would have been so positive had it been a different hospital. I say this not as a criticism of NHS units but I do think that the NHS units lack funding, the staff are over worked and stretched.

I experienced staff who could not do enough for me 24 hours a day there was a kind face and a listening ear. They just could not do enough. I am thankfully now for this experience as I think the counseling and therapy sessions I was offered were very intense and to have experienced this availability of services it may have take months if not years of therapy and prolonged depression.

I am not 100% but like to consider myself to be in recovery I not cured nor do I think I ever will be but I am having a bloody good try at life now.

Birth Injuries and a bionic bum!

Seth had been my second pregnancy so I was not so naive to think that labour would be easy – it’s called labour for a reason, because its hard work! However what I did not expect would be to sustain injuries to my body that would change my life and the way I would feel about myself.

The traumatic delivery of Seth resulted in me being left completely incontinent.

It was horrific and I cried constantly, I was only 29 and my body has been left in ruins, I told my midwife immediately of the problems I was experiencing and she arranged an appointment within days for me to see an obstetrician.

Because I had experienced an assisted delivery I had been given a episiotomy so I was given an internal (front and back) examination to ensure that the episiotomy had not been the cause of my problems but I was told that it was healing nicely and that my sphincter muscles where still intact. That it was probably just the trauma of the delivery and to give it time and I would eventually return to normal. She was very dismissive and unsympathetic it was horrible and I felt hopeless. I cried and cried in her office and she agreed to refer me for pelvic floor therapy. I started to have pelvic floor and bio feed therapy weekly but my pelvic floor muscles were none existent and I had also lost the sensation when I need to go to the toilet (for a poo) (sorry I know this is horrible to talk about, i'm still mortified writing about it).

I had no sensation what so ever when I needed to go to the toilet and would literally just poo myself at any time without warning. I had no muscle control or sensation so even if I thought I need to go to the toilet I had lost the ability to hold it in.

From December 2008 to about April 2009 I had weekly bio feed sessions but with no improvement. The physiotherapist was amazingly supportive but the experience was horrible it was mortifying. I was finally referred to a rectal surgeon. I had every test and examination under the sun. I would cry my eyes out when they were doing scans, ultra sounds, I had cameras, tubes all kinds of invasive exploratory procedures, it was so embarrassing and just mortifying.

Finally the surgeon confirmed to me that the muscle that controls the sensations from the bowel to the rectum has been paralysed and there was little that could be done. It was un-repairable. I cried and cried hysterically for days. I found it impossible to come to terms with. I was a young mum, not long married woman, how could this happen?

I couldn’t walk far from my home, couldn’t go out socially and became a hermit only leaving home if I absolutely had to. I began to withdraw completely from my friends and made excuses not to see people. I ignored my phone and wouldn’t answer the door to people. I kept the curtains shut at home so no one could look in and I hide from the world. I would take medication everyday that would stop me going to the toilet completely but that wasn’t ideal as obviously it is not meant for prolonged use. I had to wear pads constantly.

Trying to manage a baby, do the school run and basic everyday life was horrific as I still had no feelings whatsoever and no warning sign that I needed the loo.

Finally in July 2009 I was referred to another surgeon who confirmed he could help me. I could not believe it. He specialised in surgery of a device called a Sacral Nerve Stimulator which could be connected to the Sacral nerve. The devise gave off an electronic frequency 24 hours a day that would stimulate the nerve and could, if successful give back some sensation and a little warning.

I would be given surgery with a trial devise first for a two week period to see if it would help my condition. In August I had surgery for the temporary devise. For a two week period I had wires hanging out of a dressed wound in my lower back which attached to a box which controlled the stimulation and I would need to keep a bowel diary to record the success or lack of.

I couldn’t shower for two weeks, I could barely walk for a week but I didn’t care. It worked, not 100% all of the time but there was a faint feeling there and enough warning to give me chance to run to the toilet. I was over the moon. It was difficult to get used to the feeling in my body though as the devise gave off an electronic frequency 24 hours a day and would need to stay switched on. It was a cross between pins and needles and tapping and I could hear a buzzing in my ears (almost I imagine like tinnitus) again I didn’t care.

After two weeks the trial was a huge success giving me a 70% improvement on my condition.

My surgery for the permanent devise was scheduled for the October.

This time the devise would be connected to my sacral nerve, all wires would be internal and a battery running the unit would be implanted in my buttock! The battery life is 7 years so I would need surgery every 7 years for the devise to continue to work.

I was informed that it wasn’t always as successful as the trial and that it was trial and error tuning the devise into the best frequency, there was a risk of pain at the sight the devise could slip internally or twist and there was a chance of infections. I would also need to restrict the kinds of activities I did. I’m not meant to lift anything heavy, stretch, do any high impact exercise. A slip or fall could damage it and there was also the risk of the wires coming out internally. I would also need to carry a hand held remote to turn the devise on and off if needed (for example going through airport security as any high electronic frequency could affect the frequency in my devise) the remote also enables me to increase or reduce the frequency.

After surgery I was in a lot of pain and again could not walk for days. Sitting was painful and driving was a no no but my life was changed for the better.

I had surgery again in September 2010 as the battery had slipped and twisted leaving me in constant pain, I couldn’t sit properly, driving was very painful. I used to lie on my front on the sofa at home to watch the TV.

I have also has times when the frequency has been wrong or in the wrong nerve, once it was in my sciatic nerve causing excruciating pain from my back, buttock, down the back of my leg and into my foot causing my foot to contort.

I see a specialist stoma nurse about every six months but she also makes herself available if I do something silly like, heavy lifting over stretching, slipping on ice or trying belly dancing! I have messed my frequency up so many times but she has always been great. She has a massive master devise like a big radio and she tunes me in again.

I am so thankful that I was able to have this surgery, it has changed my life. Things will never be normal again but the improvements have let me lead a normal life again and start rebuilding my confidence.

Seth - Whats normal anyway?

After such a traumatic birth we were always aware that there was a possibility that Seth would go on to develop problems.

The first sign that he was different to other babies was when he was a few months old.  He was a moody, irritable baby with stiff limbs at times.  At only a few months old he developed an odd habit of moving his hands almost involuntary.  He was doing this for hours at a time, the only way to describe this was if you imagine the movement involved in revving a motorbike.  If he was not ‘revving his invisible bike’ he was holding his hands in tight fists.  Seth was regularly being monitored by a doctor at the Liverpool Woman’s Hospital and at our next appointment we mentioned this strange behaviour and the doctor confirmed that this coupled with Seth’s muscle stiffness could be an early sign of Cerebral Palsy but it would be months if not years before we would be able to ascertain whether this would be the case.

We tried to enjoy Seth, especially when he was a baby but I was already struggling to cope with motherhood, depression and managing my own problems as a result of birth injuries I had sustained.  I became obsessed with Seth’s behaviour and whether he was ‘normal’ or not.  Any strange and quirky behaviour would just add to my worries.  He soon developed a tactile need to stroke and touch hair, fur any thing soft that he could hold pull, rub on his face but my hair was usually the thing he would hold pull and rub on his face the most.  After months it became so bad that if he was distressed, tired, annoyed, moody etc the only thing that would calm him was my hair, he constantly was attached to me via my hair which made for a lot of head soreness.  I was known to eat my tea at times with my head and neck tilted to its side whilst Seth held and rubbed my hair on his face.  He looked almost euphoric at times when he was doing this his eyes was roll in his head with ecstasy that the feeling was giving him.  It was this habit of pulling and playing with my hair that prompted me to cut my own hair off when I suffered from a breakdown.

Bed times were a nightmare and he would go to bed in his cot or bed again attached to me via my hair.  It would take hours on end to settle him whilst he stayed connected to my hair.  Sometimes I would end up falling asleep in bed with him too.  My husband worked long hours and we seen very little of each other as it was but at this point we were lucky if we got to sit down together and have a proper conversation.  Connor was also beginning to suffer now he was becoming emotional, frustrated and angry at Seth behaviour and if I tried to do anything with Connor at all Seth would lash out violently at Connor.

When Seth did sleep he needed very little and would often be awake a midnight and the early hours of the morning wanting to play. 

We tried everything and in the end we resorted to taking turns every other night staying down stairs all night with Seth whilst he played in the hope that he would wear himself out, which would often take until about 4am in the morning however, he would be awake and wanting to get up in the morning for breakfast at 5.30am.  To say we were exhausted was an understatement.

By aged 1 ½ Seth’s behaviour was at its most unmanageable.  I was by this point suffering from postnatal depression and struggling with him, but in hindsight I think at that time anyone may have been tested to their limits with his behaviour.  He was frequently very violent towards me and especially his brother Connor.  His behaviour was extremely volatile and he would change without warning for any reason at all within seconds.  He started to also develop ritual like behaviour and obsessive compulsive habits.   Everything had to be done in an exact way that Seth expected.  From how we got him washed and dressed to how he went to bed, to the routes we drove to work the shop’s etc.  If any detail was different to how he perceived it should be all hell would break loose.  He was obsessed with doors, gates cupboards etc being shut and even walking to the shops he would freak out if anyone had left their garden gates open.

He didn’t play with other children or toys like other children his age and had bundles of excess energy flitting from one thing to the next forgetting what he was doing each time he saw something new.  He needed constant 100% one on one attention which made trying to by run a household, spend time with my eldest son Connor and anything else that took my attention away from Seth impossible.  Sometimes I would be so overwhelmed by his behaviour particularly the violence I would sit and cry and cry thinking what I am doing wrong? Is it my fault?  Am I a terrible mother?

As the months passed his strange and different behaviour continued.  He didn’t hold eye contact and would not listen to anything you would say to him.  He could not cope with being hugged or kissed or any form of smothered affection unless on his own terms or if he had instigated the physical contact, which very rare.   The health visitor even suggested that he may need his ears tested.   We knew there was nothing wrong with his hearing though.  He was just stubborn and extremely defiant.  If Seth didn’t want to do something then he wouldn’t and that would be the end of it.  It wasn’t just the normal terrible two’s tantrums, they were explosive and would start for no reason without any sort of trigger it was at this time I also begun to stop going out in public with him, shopping was a big no as I could not manage strangers reactions to him.  I felt like such a bad mother and so judged I began to withdraw from everything and every one and cut myself off from long standing friends and completely isolated myself. 

Despite the behavioural problems Seth was learning new words every day.  He was already very articulate and intelligent and needed new things to learn and new input.  He loved being read to and this became a massive thing in calming him.

I also bought him a doll.  My husband who is a 6 foot tall testosterone fuelled butcher was not impressed as you can imagine but I was at my wits end with the whole hair obsession I didn’t care.

Seth has always been big.  At birth he weighted 9lb 8oz and is much taller than any other children his age.  At age 3 he wears 4-5 clothes and is massive.  He is tall but generally just built solid.  Imagine the looks we got when we did go out with him in public and people looked at Seth holding a boy doll, constantly stroking the hair like doctor evil did with his fluffily white cat!   Because of the constant hair stroking to the doll very quickly the doll has become to resemble the doll from the horror film Chucky!  Seth calls the doll Baa.

At aged 1 ½ Seth’s doctor suggested to us that he though Seth may be on the Autistic Spectrum and we started to look into whether he was suffering from Autistic Spectrum Disorder.  Referral where made for him to see various specialist.  I felt at least a little relieved that there might actually be a medical condition causing his problems rather than me just being a terrible mum.  Seeing specialist especially on the NHS takes time months in fact and during the wait everything became too much and I suffered a massive breakdown at the end of July 2010.

Things are looking a lot more positive now,  We are still awaiting to see some specialist with regards to a diagnoses for ASD however as he has grown his behaviour has changed, some aspect have improved but I think also as a family we have learnt to defuse his behaviour.

He is now playing with toys and is displaying imaginative play.  He goes to nursery which has been an absolute godsend both developmentally for Seth but also offering rest bite for me and freeing some time for me to spend one to one with Connor.

There are still big challenges for us with Seth, he is suffering from Cerebral Palsy Diplegia in one of his legs this makes him very clumsy and his leg stiff he also tip toes frequently but this does not stop him racing around at full speed, tripping over and getting right back up and doing it again and again, he jumps and climbs and spins and is a ball of energy constantly needing very little rest but lots of attention.

His occpational therapist confirmed to us that in her opinion Seth is suffering from Sensory Processing Disorder (sensory seeking) this can often be mistaken for ASD and or ADHD.  Once we started looking into this disorder it was like reading about Seth.  All of the symthoms and discriptions of behaviour are just like Seth so we are now working with Seth to try and help him to grow and develop into the most he can be and hopefully ensure that he will go to a understanding and supportive mainstream school when he is 5 who will be able to understand this disorder and not just think he is a naughty and disruptive child.

Seth

Throughout my pregnancy with my son Seth, now 3 it was suspected by all medical professional that I was carrying a very large for dates baby.

At 38 week the decision was made to induce me as I was suffering from such pain and discomfort in my pelvis and hips that I could hardly walk.

The induction went as planned and I progressed into established labour quickly.  Seth was my second child so when things started to feel wrong I became very worried.  The staff whispered amongst each other and you could see from their faces that there was concern.  During my labour there was evidence on the CTG trace that my baby was in distress and eventually a decision was made to expedite delivery by ventouse delivery (basically a Dyson – and they suck and drag your baby out from you - it was absolutely barbaric).  When the head was delivered there was evidence that my baby was suffering from Shoulder Dystocia (http://en.wikipedia.org/wiki/Shoulder_dystocia) (an emergency situation when after the baby’s head is delivered the baby’s shoulder becomes stuck and cannot pass below the pubic symphysis.

After emergency procedures were implemented my baby was finally delivered at 5.55am floppy, grey and lifeless with an Apgar score of 0.  My husband held me tight shielding my vision from the team working on Seth in the corner of the room trying to resuscitate him.

Thankfully he was resuscitated and ventilated and taken to the neonatal unit but the staff were unable to tell us how much damage if any he had  sustained other than it was thought he had suffered Hypoxic-Ischemic Encephalopathy Grade 2 (HIE) and the next 48 hours would be critical.  A doctor in the unit was aware of a trial taking place locally called the ‘Toby Trial’ were new born babies who had suffered hypoxic injuries are placed in a induced state of hypothermia for 72 hours.  There has been some evidence that this state of hypothermia delays the damage and dying of any brain cells which would happen during periods of starvation of oxygen.  Seth met the criteria for the trial and we were told he would go to either Manchester or Liverpool.  Within an hour a team from the Woman’s Hospital arrived and he was transferred by ambulance to the Liverpool Woman’s Hospital.

At the Women’s Hospital Seth was ‘cooled’ for 72 hours then gradually warmed.  During this time we were unable to even touch him in case our touch raised his temperature.  It was four days after his birth that I was finally able to hold him for the first time.

Seth continued to be ventilated and his brain was monitored.  The doctors confirmed that his brain was not behaving normally nor was it behaving symptomatic of brain damage but the good news was he had not suffered from any fits and his organs were functioning well.  There was talk of the possibility of Cerebral Palsy, but no one would give us an idea about whether Seth would be ok we were told it would be years until we would be able to see if he had sustained any long lasting damage and how if he did it would manifest itself but he would be monitored and reviewed frequently over the next few years to follow his development.  We didn’t care though, he was our baby no matter what and he was alive. 

After 4 days Seth started breathing for himself and after 10 days he came home.

The day we went to collect him from hospital was a crisp frosty December and as we drove through Liverpool to the hospital there were thousands of Santa running the ‘Santa Dash’ it was like all my Christmases had come at once our baby would be home for Christmas.

The special care baby unit was amazing, they even had a page where they would post pictures of Seth and updates on how he was doing so we could see and our friends and family could follow his progress.

Seth is now 3, the past 3 years have been a challenge to say the least and he is displaying some behaviour problems and has stiffness in one of his leg.

He is so different to any other child, he is so stubborn to the point that his health visitor thought he was deaf and had his ears tested.  They were fine he just chooses not to listen to you.  He is very unique and can literally in minutes reduce me to tears with his difficult behaviour then have me roaring with laughter with his strange ways and outlook on life.

We as a family have had major ups and downs with Seth and his behaviour but could never be without him in our life

Breakdown

As my husband and I sat in the physiatrist office I felt like I was watching the scene from outside of my body.  I sat huddled in the chair hugging myself as the doctor and my husband Kenny discussed my behavior and past traumas.  Dr Raham, was suggesting to Kenny that I needed to stay in the hospital for 4-6 weeks to recover.  I sat in a state of shock. 4-6 weeks surly he had made a mistake, I’m not that ill.  I thought I would be having a weekend stay at the most.  Kenny thanked the doctor and it was arranged that I would go home for a few hours whilst they sorted out the paperwork and my insurance funding and I would be admitted later that evening.  It felt surreal.  As we drove home I felt in a state of shock 4-6 weeks I’m not that ill I protested to Kenny.  He just looked at me with such sadness that said yes you are.

The next few hours felt strange, Kenny spent a lot of time on his phone talking about me to various people as if I wasn’t there and making child care arrangement for our boys.

Shall we go for lunch Kenny suggested?  “I can’t believe that it takes a nervous breakdown for you to take me out for lunch” was my answer.  So we went for lunch, it was like an elephant was in the room with us.  An hour ago we were just told that I was suffering from post natal depression and had had a nervous breakdown and here we were sat eating lunch like any normal couple discussing what I needed to pack for my stay at The Priory. I felt like everyone in the room knew I was a nutter, like there was a massive neon sign with flashing lights above my head saying “CRAZY LADY”.

After lunch the surreal normal day continued.  We went to the supermarket and bought toiletries and tracksuit bottoms for me, came home and packed.  Kenny then went through my suitcase to check that there was nothing sharp hidden which I could harm myself with.  Part of me just couldn’t understand his behavior towards me “am I that bad really” I questioned?  “yes you are” he answered.  We walked our dog in pretty much silence whilst I tried to talk him out of taking me to the Priory.  “I’m fine” I pleaded, “I’m much better” I begged,  Kenny never once backed down, “No you are not fine, you have to go I am sorry.   I can’t cope with your behavior anymore, you are no longer my Jo, you need professional help“His words cut like a knife, how had this happened to me?

We returned home and I had a shower and *smoked a cigarette out of the window of the bathroom like a naughty teenager, I even put a towel at the bottom of the bathroom door as I knew Kenny would not approve.  I was so anxious and this was exactly the time when I would previously have self harmed but Kenny had hidden all sharp objects so the cigarette was another coping mechanism.

*Most depressives smoke

Dr Gregory A Ordway, a Professor of psychiarity at the University of Mississippi Medical Centre and collaborator Dr Violets Klimek, compare brain tissues samples from long term smokers with samples from non-smokers and conclude that chronic smoking produces ‘anti-depressant-like’ effects on the human brain.  This may contribute to the high incidence of smoking and difficulty to quit in those who are depressed.  Archives of General Psychiatry, September 2001.  In 2006 researchers at Duke University

Medical Centre gave nicotine or placebo patches to a group of non-smokers diagnosed with depression, then measured their symptoms using standardised questionnaire.  They found that those who wore the nicotine patch for at least 8 days experienced significant declines in depressive symptoms.

Seth then and now