Cuckoo?

Although it is more of an "acceptable" subject these days, mental health still holds something of a taboo. It is not one to be discussed lightly and can be a minefield of political correctness, ignorance and compassion. We're all guilty of claiming to be "depressed" when the washing basket is too full, "going mad" when it's been a bad week or five or "traumatised" over losing something but none of these really go anywhere near acknowledging how it really feels if you are genuinely battling with a mental illness. Mental illness sounds terrifyingly serious. It describes a huge umbrella of things in varying severity, many of which can be recovered from and escaped. I don't think anyone ever expects to become a sufferer or a loved one to succumb. Until you are gripped by one, it is very hard to fully understand being controlled by thoughts and emotions, many devoid of reason or rationality.

There can also be such a fine line.

When do the baby blues turn into postnatal depression? When does grief turn into depression? When does shock turn into post-traumatic stress? When does worry turn into full-blown anxiety?

I cannot speak for everyone, only from my personal experience. At present, I am currently signed off work for a small period following over a year of dealing with post traumatic stress, depression and anxiety. In the main, I have largely been able to control these with help from sertaline (a selected serotonin uptake inhibitor, or SSRI drug) and a course of counselling. There have been low points certainly but so far I have been able to juggle things even if that means really struggling. Lately though, the struggle has been getting harder. Motivation and concentration have gone out the window, and I have been exhausted. My mind has spiralled into a whirlwind of pure emotion, little based on fact. It's not something visible or that people can necessarily understand, which I have found the hardest part. It's easier to joke about loosing your marbles than it is so say "I really, really need some help."

I don't know whether the feelings started from a difficult birth and extended stay in Neonatal, but they certainly grew at an astounding rate shortly after discharge from Paediatric Intensive Care when Wriggles had pneumonia at 6 months old. Then I became quickly swamped, and whilst I could muddle through in the day, when Wriggles was in bed and separated from me, I became a mess. I couldn't eat, drink or sleep, let alone do the washing up. I would sit, glued to the sofa because I felt too leaden to move. I was in a perpetual state of hyper vigilance, waiting ears pricked for disaster to loom again, and would cry silent tears and become surrounded by flashbacks and nightmares of my daughter in distress. The relief after admitting how far things had come was huge. I was told it was a form of post-traumatic stress. Granted, it wasn't going to be the severity of soldiers from combat or people who have suffered horrific abuse or ordeals but in my little world, my family had been rocked as I had stared bleakly at the prospect of losing my child. I was started on sertaline and began counselling in earnest with a wonderful psychologist who had had a premature baby herself previously, which acted as an excellent bond and feeling of trust that she knew what I was going through. With support, the acuteness and rawness began to fade and I began to gain confidence and relax. Daytimes became better, where I could revel and immerse myself in Wriggles without inhibition and slowly I re-learnt to be "normal" at the end of the day and enjoy working. Unfortunately Wriggles had other ideas and an admission lasting nearly a month and enduring a mis-diagnosis of queried brain damage with an unsafe swallow triggered everything off again. I regularly would "hear" the noises of the ventilator and alarms going off and would burst into tears at anything. Thankfully, I was in good hands and able to get back on track with the healing process and shaking things off before a welcome break in the hub of my family over Christmas.

So what now, five months on? Where did I slip again when it was all going so swimmingly? Wriggles is 19 months today, it is just a year yesterday since leaving the hospital after our PICU scare and she is blossoming all the time. It isn't as simple as accepting things are better and consequently getting on with things. It isn't as simple as processing memories. I suspect that like everything, it needs time and these are relatively early days. I imagine also the sense of responsibility and physical demands of being the sole carer as a single parent have not helped, draining me of some energy and quickening the need for maturity and stability. Of course I wouldn't have it any other way, and I would do it all again to have my little girl with me. But once you have been gripped by the fear, it is all too easy for your brain to muddle up facts with emotions and responses with feelings and turn a vulnerable mind into a seemingly random generator of reactions. Depression and anxiety can be bred from post-traumatic stress, they can be there independently. It is beside the point how they got here for me, only that they are there and it is the physical symptoms of them which made me go to GP this week and resulted in some weeks off. It isn't as easy as pointing at a specific memory and saying, "yup, that one there. Zap it" as it is far more complex, especially as some upheaval and work-based anxiety is very much playing into this at present. It wasn't easy admitting it this time and agreeing to take time off. I have been encouraged to in the past but always declined partly for feeling it would be selfish. Yes, it is my responsibility to keep our heads above water financially. But it is also my responsibility to make sure I can care for Wriggles to the best of my ability to ensure that she remains the happy and healthy toddler she is. 

I am confident I can return to being myself, i just need to harness this blasted anxiety and stem the flow of overpowering emotions that come from memory which will enable to me to clearly deal with everyday worries rather than letting them get out of control and taking on exaggerated and fictitious fears. Much of the feeling is a peculiar form of grief and guilt. One blog I enjoy has put this into words better than I can here. It feels wrong to use the word 'grief' without reference to a bereavement, as I am acutely aware how lucky I am not to have had to deal with such and my heart goes out to all that sadly have. The feelings are similar though, and in my experience can stun you into a sense of separating from the rest of the world. Asking for help and admitting that I can't just lock a box of the past away has been one of the hardest things I have done, and I am not naive enough to think it will all just magic away and that there may be repercussions in how people tread in the future. But that is another day. For now, I am looking after Wriggles, and looking after myself *puts kettle on".

Separation

Imagine your child can't be home with you.

Imagine, just imagine. Imagine leaving your child, having to say goodbye and walk out the door. It's hard isn't it? I'm not talking walk out the door to go to work, to have a haircut, to have five minutes peace, but to walk off for the night and not return until the morning leaving a vulnerable child. I don't have to imagine, I know all too well.

Wriggles, my baby daughter is 16 and a half months old, 488 days. Since the day of her birth, I have spent 72 nights apart from her. That is almost 15% of her lifetime, not being there in the dark hours to attend to her every need. 15% forfeiting motherly duties and feeling helpless and guilt that my child may well be scared, being looked after by strangers. Of those dreadful 72 nights, 61 were spent in Neonatal Intensive Care and then Special Care as a neonate, needing to get to the optimum stage of getting home. The last 11 were while she was 6 months old in Paediatric Intensive Care. Between the remaining 85% of night times, we have spent numerous nights in hospital wards. I don't care to specify numbers or days, all I know is that it is quite a lot. Thankfully, those nights I spent sharing her bedside or cubicle in a pull-down bed, a fold out chair or a camp bed. They were tough, yes, but I was just so grateful to be with her I couldn't give a hoot. Because leaving your child at bedtime and not coming back is, well I can't find words for it.

Bizarre.

Heart-breaking.

Wrenching.

Guilt inducing.

Surreal.

Shameful.

They maybe are a few, but they don't even come close to summing up the well of loneliness and emptiness that you carry with you. Never have you feared silence so much, never have you keenly felt the emptiness of your arms.

There is no etiquette either for how to act. When Wriggles was in Special care and not in any immediate danger, there were the conflicting assumptions: 1) that life had to go on and 2) I should be by her side. It is not physically possible to spend every waking minute beside an incubator, for some parents it is not possible to spend every single day. Yet the times you are not there, you are in a daze, a sort of no-mans land. Time is not as you know it. During the SCBU stint, I had one night where I went to the ballet, taken by a friend who thought I needed distraction (she was right, it turned out to be a crucial night for straightening my thoughts. My premature daughter never left my mind throughout the whole performance, and it was this that really hit home just how much everything meant. As the saying goes, you can run but you can't hide) and for four weeks when I went a little potty, returned to work 20 hours a week in the office. That definitely was a mistake. I could barely concentrate at work, I resented being there however much I needed the money knowing that imminent single-parenthood was around the corner and a long stretch of time off work caring for a child on oxygen, and I ran myself ragged trying to simultaneously be at hospital and office and continuously running (literally, I must have looked mad) between the two, which luckily where a fifteen minute walk apart. I also had to collate all baby items that I had not yet bought in that time and rapidly sort out finances and living space. I would stay at the hospital late into the night and would sleep with a increasingly crumpled photograph of my daughter on my pillow. It was no replacement.

Intensive Care was different; her health was an utterly different state of affairs and the experience was far harder. Again, I knew she was in the best hands and separation was a medical necessity but sleeping away from your critical child is not something that is easy. In fact, sleeping may be an overstatement. Can you imagine going to bed without hope? Waking with a hollow dread-alone? A bed had never seemed bigger and night seemed cruel.

We still share a bedroom now, thankfully back in our cosy flat. At first, after the times apart it was a comfort to share a space and know I was not even metres away from her, but could reach out and brush her cot with my fingers. Now she is getting older, I just have not had time or spare hands to move my bed in my own room and give us both some grown up space. I will do very soon, it is time to move on and put some of the past to rest. The bad times are over, and we pulled through, Wriggles triumphant. Now I sleep every night with my snuffler and I love it, whether through the baby-monitor or my own ears.Until she is old enough for sleepovers or I have gone mad with baby-chatter, I will be uneasy unless we are under the same roof each night. It makes me feel safe to know she is nearby. There has been enough separation. 

This is part of the Yummy Mummy campaign for CLIC Sargent, raising awareness for children with cancer. Visit www.yummymummy.org.uk for information and fundraising ideas and search Twitter for #dosomethingyummy. No one ever expects it will be then, but what makes the difference if it is, is knowing that there is help and support available.

Go to Nickie at I Am Typecast to view others and see what she has to say.

A Confused Mummy

Today I am a confused mummy. Well,  most days I am a confused mummy but today I am struggling with some of my feelings.

I wonder what it is like to have an "average" baby.

I wonder if there is such an encompassing thing as an "average" or "normal" baby or experience of having one.

There are daily reminders that I have a premature baby who has had some struggles. She is brilliant and amazing and as feisty as the next temperamental feisty madam but as sole parent and carer I am feeling a bit swamped at times both with all the information I have to take on board and all the running around to appointments I still have to keep. Is this normal?! I frankly have no idea any more. 

Wriggles, or her new temporary nickname Noisebag, is a little over 16 months and 13 corrected. To date we are currently under neonatology, paediatrics, neurology (luckily her consultant paed doubles up as this to reduce clinics!), dieticians, physiotherapy and are awaiting the referral from speech and language. Thankfully we have now been released from community nursing, respiratory and social work, (which we were automatically under as she had spent a certain period of time in hospital so you automatically get a helpful form-filler-er, not because I am incompetent; at least that is the information I was given....). We also have to attend very regular weigh-ins as Wriggles/Noisebag still generally refuses solids or gags about 70% of the time and as I have had a few blip-y moments along the way, I have to report every now and then to the GP and Health visitors to affirm I have no intention of jumping off a cliff or do not wander about Sainsburys wringing my hands and howling for England. My HV has decided that obviously it has all come about because I do not regularly attend infant massage groups. I can tell her that I have no concern about my bond with Wriggles but am just exhausted from weekly hospital visits until I am blue in the face but she still keeps turning up at my front door with a grubby plastic doll and sunflower oil trilling about the benefits.

 At present, excepting the weekend, every day I am not at work, I am attending an outpatient clinic for Wriggles, ferrying around to appointments or pacifying a nude Noisebag in the community scales at the Postnatal Centre. Now time is moving on, we have started receiving invites for groups of "additional needs" children also, which gives me very mixed feelings. I do not see Wriggles as having additional needs. Lags/delays yes, I fully accept that, but additional needs? She doesn't need extra care or specific skills to look after her at present. She might be doing things at her own pace but so far there is nothing I think she won't do and as far as I am aware this view is shared by the doctors. It really is a hard one; obviously I wouldn't give two hoots if she did need extra care and help, as she is my star and I love her unequivocally. I don't want to seem selfish as I am very aware we are lucky to be in 'the system' and in an area where there is a range of activities for children of all stages and have some professionals that go above and beyond their jobs. It is great that there is help to nudge her in the right direction and iron out some bumps as they show up, really it is. Honest. I'm sure if we didn't get these opportunities then I would be on my soapbox grumping about exclusions and worrying frantically that she wouldn't catch up or ever eat more than a bit of mashed banana once a month.

The "problem" if indeed there is one and I am not utterly crackers, is that when we go to a "normal" Mother and Baby group, I still often feel like I am from another planet and when we go to a "special" group I feel a complete fraud. Throughout year one of having a little creature, I spent the first two months in hospital followed by three months as a hermit with a baby on oxygen in the winter months when RSV was rife and my road was closed off due to snowdrifts and ice. There was then a marvellous hiatus of a few weeks when I began to go out and about, had more visits from friends, began to wean her with success and began to address the impending return to work. Then we abruptly wound up in intensive care and spent the next six months being in and out and in and out and in and out and in and you get the picture. Thankfully things have calmed down after birthday numero uno and I have deliberately made two term-long booking at baby groups on my days off to make sure that we get out, socialise and do normal things between the dreaded appointments. We have been for coffee with mums and babies and began to find our feet on days off together and it is a teeny weeny bit scary but marvellous. Tentatively, I have even told the 'story' to fellow mums I see, against my HV's 'advice' that I will scare them off and they will avoid us-so far this has proved to be utter codswallop and no one picks friendships in this way, especially given that whatever has happened, what is happening now is that we all have increasingly chaos-inducing mess-making becoming-independent darlings/monsters/I-could-have-sworn-she-was-a-tiny-baby-only-yesterday's and all feel like a bit of a joke every now and then even with a beautiful house and a Mr Darcy lookalike husband. I just wish there were more days in the week, or that no one had to work, to be able to spend more time doing this and less time sat in the waiting rooms clutching medical notes. I miss the year I lost out on swanning around to groups and gazing into my baby's eyes as it feels like I spent a lot of it sat anxiously at a cot-side in hospital.

I know in my heart of hearts that most people feel like this. So many of us are torn between mummy duties and well, the rest of life. Faced with the media, literature and swathes of advertising portraying Perfection, all parents, all people stumble around trying their best and adjusting their ideas like crazy to find their own corner of reality.

The main thing is I have a very nice baby and generally, life is pretty good.

So my new New Years Resolutions are: 

1. spring-clean brain

2. stop grumbling
3. look forwards not backwards (you WILL trip over or walk into a proverbial lampost)