Blog

Returning to normality…

Life is good.

I feel stable, I feel calm and life has slowly returned to our version of ‘normal’.

I feel completely blessed, I am surrounded by family, positivity and love yet I find myself asking…. Was this meant to happen? Was I always finding my way back to normal? This is something my brother is going through. A cancer diagnosis followed by week after week of chemo and dreams of an amazing post cancer life. We have both found ourselves back at our normal.

I feel like I momentarily fell of life’s treadmill, brushed myself off and I have returned matching my steps to the crowds around me. This is great, this is normal but can I ask for more?

I have always seen my struggles with mental illness in a positive light. I wanted to see it as a starting point from which to grow. In many ways the only way was up! I am facing a hurdle to that and the hurdle is me. I have found myself retreating back to my old comfort zones. I am eating the wrong food, I am not exercising regularly and my Yoga mat is taunting me from the top of the wardrobe as it hasn’t seen the light of day in months. I have kidneys that don’t function properly yet I find myself holding a glass of wine and eating salty food at the end of the day….as I write this I see what is happening – self sabotage. I have let myself get better to a point, I have returned successfully to my normal but can I let myself thrive? Is that allowed?

I have signed up to do the Edinburgh marathon in March. I would love to achieve this goal. I will not be able to if I do not put some time and effort in. I’m very good at findings things that are more important to do than going for a run. This is something I am struggling with as I feel like I am spending time on me that is not necessary or needed and I could be with my husband or son doing something for them.

I want to run, I want to eat amazingly healthy food. I want to run my own business. I also want to be able to turn the Ipad off and be alone with my thoughts ….but can I let myself?

I read an amazing quote on a parenting facebook site that read ‘Self care is not me first, it’s me too’.  I need to start saying this to myself.

 

Tonight is a night for rest and planning.

 

Tomorrow is a new day and a fresh start.

#100 days of self care

‘Any time spent on me is a complete waste of time!’ ‘Do you really believe that?’ the psychologist said. I let out a deep sigh and shake my head. This woman does not get it. Of course it was true; I was shocked that she even questioned it. In my mind I no longer deserved sleep, rest, food or water. I would make amazing home made food for Joseph and survive off a coffee and a Greggs pasty. I was running on adrenaline and caffeine and my blood sugar was like a roller coaster. I felt that anything that was just for me was a complete waste of time and energy. I believed this so wholeheartedly and so strongly that I was sure I would feel like this forever. I even felt guilty taking the phone call and I was most definitely pouring from an empty cup.

Looking back at this memory I do not really see myself anymore only a very scared and very tired new mother. I took the call as Joseph was sleeping and I was pacing the hallway in tears. Why didn’t I sit down and rest?  I want to go back and give her a big hug. I would tell her that she was doing a great job, that her baby loved her and I would tell her to sit down and eat some lunch.

It has taken me months of hard work to get to this point of recognition. I can now finally see the illness and myself as separate entities; I no longer have the blinkered vision of depression. Long may this continue! This is a break though but only really signals the start. I am very grateful I have felt like this. It might sound strange but I am starting to view my depression as a gift. My darkest moments were horrific but I needed it. I feel that sick child or not this was always going to happen. This depression has given me the permission I needed to find my true character and be my true self. My whole life I have tried to fit into boxes and be the person people expected me to be – I say a very firm and friendly NO to this now.

I find myself faced with an even more important question…’Who am I anyway?’ I am working with a life coach who has asked me to try and be completely vulnerable. The aim is to feel and express my true feelings without the fear of other people’s judgements. If I am sad – be it. If I am in a bad mood – be it. If I am feeling reflective – maybe write about it. I initially thought this would be really difficult but I have found it liberating. I don’t need to be who people expect me to be – I can just be me. My first questions after a social event are always…’Was I OK?’ ‘Was I chatty enough?’ ‘What do you think people thought about me?’ If I ask these questions to my husband he is under strict orders to ignore me! I am very much enjoying not thinking about other people’s opinions.

One thing I have noticed is that you first need to get the basics right. All this development and spiritual awareness stuff is great but if I haven’t eaten all day and surviving on coffee I am doomed to failure. I can very easily slip back in to my old ways of thinking which although uncomfortable are still very much the comfort zone.

I have decided to start small…eat, drink and sleep…every day! I am starting a 100 day self care challenge of ensuring I am looking after my mind and body. You can not pour from an empty cup and my cup really needs filling back up!

 

 

To Medicate or not to medicate….

What a question? I have lots of mixed feelings about the use of anti depressants. I tried so hard to avoid taking them. I thought taking them would feel like I was giving up on myself. The feeling that I could not cope with this alone and needed additional help was crushing.

I have read a lot of blogs and listened to mental health podcasts where people have talked about overcoming depression without medication with a great deal of pride, wearing it as a badge of honour even. This is great for them, but these stories did not help me.

I was listening to Susan Calman on the radio and she equated how severe her depression was with how many box sets she got through. At my lowest I managed to watch every single episode of the West Wing – all 156! Whenever Joseph was asleep I would have one eye on the iPad watching the show and one eye on the baby monitor. I carried these devices around the house with me as I did jobs. I could not turn it off, most of the time I was not even watching it I just needed to have the noise, the conversation. I could not cope with being alone with my thoughts. I spoke to the psychologist about this and she asked me what would happen if the battery ran out – I nearly had a panic attack.

This wasn’t even the first time I had watched the West Wing – it was the third! I knew the storylines and the characters and it was not going to surprise me. At a time when I didn’t really know my own mind or what emergency was going to happen that day I didn’t need any more surprises. I needed my West Wing comfort blanket.

I returned to work in the January after Joseph’s third heart operation and a full years’ maternity leave. I was suddenly back in front of a classroom again, doing my best to think and act normal. I was even trying to plan for the future…I couldn’t even plan for the future in my own life. I was not ready for this; acting ‘normal’ was exhausting. I felt like and probably appeared like a very strange robot. After a couple of weeks of this I gave in, I mentally released the tight grip I had on my life, I wanted to stop, I wanted to start again.

I went to the GP. I couldn’t talk to her; I was too ashamed about the state I was in. I wrote her a letter that she read in front of me. She was wonderful. After a few appointments and lots of talking I was given a prescription. They warn you that anti depressants will make you feel nauseous. This is a complete understatement – I felt terrible for about three weeks. After this time I felt the tight knot that was my mind and body start to loosen. I had been relying massively on to do lists to get me through the day and I found I needed these less. I was no longer starting 50 tasks and finishing none, I could complete something. I could eat something; I could sit and read a few pages of a book. The medication is not a fix, but it has helped me to relax and fully engage in the therapies that were eventually going to fix me.

I congratulate the people that have managed to overcome depression without the use of medication. Focusing instead on diet and exercise is fantastic but that was not an option that my mental state made plausible.

The all natural way is seen as the healthiest and the safest option. This is true as well in pregnancy and childbirth. I did not have a natural delivery; I had to have a C-section. I only breastfed Joseph for 3 weeks. Similarly in my battle with depression, we had to use alternatives. I can see now after a lot of work that this does not make me a bad mother; this is just my journey.

Overcoming Trauma

Recently I had my last session of eye movement desensitisation and reprocessing (EMDR). This is a psycho analytical technique which uses the REM eye movement to help reprogram and save traumatic memories. This treatment has been hugely beneficial but also incredibly difficult to complete. The technique requires you to revisit the trauma and experience the situation again. Whilst you are going through this a psychologist completes a movement with their hand and you follow their fingers. This is a movement similar to the REM sleep cycle. This sounds a bit crazy, at first I had no idea what was happening and I felt like I was being hypnotised. You are asked to picture a traumatic memory – the most recent, the worst and the most significant. These sessions have been ongoing for 6 weeks but we have only recently completed what I felt was the ‘worst’ trauma.

You are asked to imagine a picture postcard image of the trauma and as soon as I do this I am back there. I no longer feel present in the psychologist’s room, I do not feel present in my own body and I have been moved back to that moment. I am asked how I feel about myself in this memory and how my body feels – do I feel tense? Am I in pain? The most important thing I have learnt about trauma is that your body remembers – in some cases I felt like my body remembered more than my mind. Each traumatic memory has made my stomach tense, my legs jumpy and given me an intense pain in my throat. On reflection I think this relates to my need to run for help, to quickly jump into action and the maybe the suppression of my fear. If you can put yourself back into a memory quickly, see everything in full colour, feel the sensations and sense the smells it could be that you have a memory that has not been processed properly. I am in no way a psychologist and this is just my interpretation. I do know that certain traumas have affected me so significantly that it has impacted on every aspect of my life and my life has had to go on hold until I have resolved them.

The ‘worst’ trauma that I wanted to deal with was not related to Joseph’s diagnosis, hospital stays or even surgery….it was bloody croup. Joseph has suffered from croup so many times that I have lost count. When it started I did not know what was happening. Joseph had gone from peacefully asleep in his cot to struggling for every breath.  I had been relaxing in the bath and heard a loud gasp for air coming from the bedroom. I thought he was going to die. I reacted quickly, called 999 and we were rushed to resus. The paramedics have called ahead as they think Joseph is in danger and potentially going into heart failure. As we arrive he lets out a loud barking cough…’Its just croup’ they say….’it’s very common’. This happens again the next night, the night after that and the night after that. I become oddly comfortable calling for an ambulance. Some investigations show that Joseph has a physiological problem with his throat which means that the croup infection that causes the throat to swell has a severe impact on Joseph. They promise me that he should never stop breathing but this could happen again and again until his throat strengthens. We are now on high alert. This only seems to happen at night so Joseph is never left in a room to sleep by himself. We put out clothes for a hospital trip before we go to bed. I watch him constantly during the day to ensure he is not going blue and at night we wait for him to struggle to breathe. We can not relax. This lasts for months but the effects for me mentally last much longer. Joseph is fine now but I have struggled to move out of this hyper vigilant mode. I have learnt through this trauma work that this is because my body and my mind still think that I am living in that moment. I could not eat, sit and watch TV, I couldn’t read and I struggled to have a conversation. I could talk to some one but only whilst still looking at Joseph. I was not being rude; I just had to give Joseph my full attention all the time.   This was exhausting and not healthy. I found going back to work very hard. I knew Joseph was ok but my body still thought I needed to behave in a certain way to keep him alive.

EMDR has enabled me to go back to these croup episodes, tweak the memory and save it in the right place. This has had a profound affect on my life. I feel less tired, less paranoid and my body is more relaxed. It is only now that I have completed this treatment that I have the head space to think about the future. This has definitely signalled the start of my post traumatic growth.

If you can relate to this in any way please know that help is out there. The effects of trauma can be completely debilitating but you definitely can get better!

I am now very much looking forward to the future.

Joseph’s Story – Home Time

Nothing prepares you for walking through the doors into paediatric intensive care. As I think about those days I am not sure how we coped. I remember feeling like a robot – Just one foot in front of the other, just one breath at a time. I think your mind struggles to come to terms with the huge emotional upheaval and you have to turn into the most basic version of yourself just to survive.

You walk in, take your coat off, wash your hands and put on a plastic apron. Only then are you allowed to see your child. Joseph is lying in a nappy, unrecognisable as he is so swollen, ventilated, surrounded by beeping machines, a huge angry looking scar down his chest. Thinking back to this moment I am overcome with feelings of pride. My son is truly remarkable. I am unbelievable proud of the obstacles he has overcome and the amazing boy he is turning into everyday. I think this is partly why I started the blog. I have always externalised my feelings, always wanting to talk things through to make sense of them but I also think I want to shout from the rooftops how special my son is.

Joseph makes slow and steady progress in intensive care. Every day brings a new milestone. Reduced medicine, reduced oxygen – we have passed the first 24 hours. The swelling is starting to go down, the scar healing – we have passed the first 48 hours. Eventually Joseph is taken off the ventilator and wakes up. I am allowed to cuddle him. I can’t stop myself from smiling when I think about this. We did it! Joseph did it! I don’t think I was smiling at the time, I was completely shell shocked but a treatment called ‘eye movement desensitisation and re processing’ has allowed me to go back to these memories, re shape them and file them in the right place. This has been so fundamental to my recovery and I will talk about this more in another post.

Weeks have passed and Joseph has been moved from intensive care to high dependency and finally to the nursery; our last stop on the Freeman journey before we get to take him home. We are all tired but exhilarated at the thought of having our baby at home. I made a promise to Joseph on the 27th February that I would not go home without him and thanks to Scott House I have not had to. I will always be eternally grateful for this.

It is amazing to be home. However, we know it will be short lived. Joseph’s operation has kept him alive but we know he is deteriorating. We are told to expect something called ‘tet spells’ they are caused by a massive drop in oxygen in the blood. Joseph would go a deep blue colour and become very angry. We are told what to do when this happens – this is terrifying. All of Joseph’s illness so far has been managed by professionals and now it is just us. I do not feel ready for this new role, but I step up. I now see that this is Joseph helping me to become the mother I was always meant to be.

Forgiveness

Forgiveness

I really hate upsetting people. I feel awful if I had done or said the wrong thing and upset somebody. I feel the most enormous guilt and I am normally grovelling for their forgiveness soon after. This trait of my personality was definitely not ready for the guilt you can feel when you become a mother. You can make yourself feel guilty so easily….struggling to breastfeed…guilt….not going to playgroup…guilt….letting the baby cry just a moment longer so you can finish your cup of tea…guilt

Guilt has been something that has surrounded me since I became a mother. I have felt guilty because I had accepted that my son’s condition must be in some way my fault. I think this is a really important emotion to talk about in mental health. The key issue guilt gave me is that it then prevented me from getting better and seeking help sooner. I believed I did not deserve to get better. I think this could be something lots of people can relate to….you don’t deserve the nice partner…you don’t deserve the good job…you don’t deserve love…so you can easily stop trying.

The doctors and cardiologists have told me that this was not my fault. My husband has told me that this was not my fault, in his words it was ‘a genetic roll of the dice’. A phrase he unfortunately has to say a lot as we end up having the same conversation every couple of weeks. During my pregnancy I think I did everything right. I took all my vitamins, I ate well, I tried not to get stressed, I didn’t drink alcohol or take drugs (unless half a glass of champagne on Christmas day counts?). This is the rational part of my brain; the not so rational part of my brain firmly believes that this was my fault. This belief has then affected every aspect of my life. This belief has turned into the prism through which I see everything around me. Through this prism I believed that everybody in my life viewed Joseph’s condition as my fault.

I became very defensive and unable to accept any kind of advice, feedback or criticism. I was permanently defending myself to show that I was good mother and worthy of Joseph. As a consequence of this I felt like I was unable to ask for help. If I did ask for help I and others around me would see this as a failure. I was on a one woman crusade to show everyone that I was a good mother. For me this manifested itself in always being out of the house (no matter how tired I was), going to every baby class possible (when we were not in hospital) and fundamentally giving myself 100% to Joseph at the risk of losing my identity.

I can thankfully now see that this was an extreme reaction and not necessary. I did not need to convince the people around me. (It doesn’t really matter what they think). The only person I needed to convince was me!  This was easier said than done. Forgiveness and choosing to forgive yourself is a hard task. It has taken me months to recognise that this was an issue and address it. For a while I could not say the words ‘I am a good mother’ instead I would state all the things I had done wrong. I have spent hours with my psychologist practising and trying to show myself that I did a lot / do a lot of good stuff. It was extremely difficult and most ‘good things’ were said half heartedly and through gritted teeth but it did become easier. When you are depressed or anxious it can become very easy to get tunnel vision and only see the world through your negative mindset. If you are able to I would recommend spending a few moments and practising only saying & thinking positive things about yourself. Try to stop yourself when you move to the negative. To start with I could only do this for a few seconds, but before you know it that turns into a minute… and then 2 minutes ….setting yourself small achievable goals might help. Meditation and yoga have really helped me, both practices focus on letting go, not thinking of anything and focusing on your breath, this has given my brain and body much needed time to relax and calm down.

I have also spent lots of time thinking about ‘intention’. In the words of my psychologist, ‘can you feel guilty for something if you did not intend for it to happen’. I did not intend for this to happen. When I see other mums and dads in hospital I never assume that their child’s illness is their fault that would be cruel, callous and most probably untrue. My intentions for Joseph are the complete opposite of heart disease. I have spent some time thinking about my true intentions for my baby boy and wanted to share some with you.

I hope you can always be true to yourself and live the life that you want to live.

I hope you fall madly & deeply in love.

I wish you find true and wonderful friends who you can share your life journey with.

I hope you get the see the world, bask in its beauty and view it as a fun place, full of possibilities and adventure just waiting to be seized.

I hope you respect and care for others and most importantly respect yourself.

As I write this Joseph is fast asleep and cuddled into me. He is feeling under the weather and has tonsillitis. He is a bit grumpy and in pain but he turns to me for comfort and warmth. My son trusts that I will help him get better. If he can trust me then maybe I can trust me too. I have chosen to now focus on my true intentions for Joseph

 

I feel a lot lighter and I don’t think I need to feel guilty anymore.

My perspective on depression

I always thought people with depression were weak. If you were depressed about part of your life you should just work harder and change it. I thought that a strong work ethic would allow people to change any element of their life for the better. I now see how naive that was.

Causes of depression are far and varied and depression as an illness is very common. According to MIND 1 in 4 people will suffer from some sort of mental illness in any given year. Some people are at a greater genetic risk of developing depression but also early life experiences can influence if you are likely to suffer. Depression can also be caused by a specific traumatic situation or event. I believe this is what happened to me after Joseph’s diagnosis and I was thrown off the metaphorical cliff after a pregnancy loss.

It has taken me a long time to come to terms with the fact that I have severe depression. My illness at times can leave me lifeless. I have hit rock bottom and seriously considered suicide. I have felt the world and my loved ones would be better off without me. I have handled knives carefully as I fight the urge to cut myself – I believed I deserved to feel pain. I have walked through the hallways of the Freeman in such a rage of anger and inner turmoil that I wanted to pick a fight with a man, not just any man but a massive, strong burly man – some one who could really hurt me. I may be starting to sound a bit crazy but all of these things are ok….this is my version of depression. If you are feeling anxious, angry, feel a failure, if you feel trapped. My message to you is that you are not alone. There is nothing to feel embarrassed or ashamed about. This is depression and millions of people around the world suffer from this illness.  You can get better from this – I am getting better from this.

2015 is a blur of surgeries, intensive care, Scott House, clinics, ECG’s, tube feeding, injections and more. I was so busy caring for Joseph that I did not realise that I was becoming ill. I started to find small things difficult, looking after Joseph became more tiring, leaving the house was now a daunting task, meeting friends filled me with fear. One day I cracked and in floods of tears as my baby slept I called the health visitor. I had put my hand up and shouted that I needed help. She was amazing, she said ‘Well Done – you have admitted you need help. This is the hardest step. I am going to pop up and see you’. Thank you lovely health visitor, this signalled the start of my recovery.

My depression had come in waves and really only came thick and fast when Joseph became stable and out of immediate danger. My body had got so used to being in ‘flight or fight’ mode constantly…I didn’t need to ring 999, I didn’t need to give him life saving drugs – I could relax now. But how do you do that?  How do you go from hyper vigilant mum to a slightly less hyper vigilant mum? This is the balance I am trying to find. (all helpful tips accepted gratefully)

My son & brother have proved that you can fight and win the most horrific of illnesses. I am no longer the Debbie I used to know ….I am not the Debbie my friends expect to see…I am different but I am slowly turning into a better version of myself. I am turning into the mother I was always meant to be.