Missing Gaps

Before I jump in with life post-intensive care #2, I'll back track. Wriggles recovered from her tonsillectomy after a tense fortnight of religious administration of Calpol and ibuprofen and by the end of July you would not have been able to tell that weeks ago she had had surgery. Her breathing pattern whilst asleep improved-if anything it unnerved me how quiet she was! I was so used to sleeping next to someone who sounded as if they had tumbled out of the pub after downing their body weight in pints, that to have the serenity of near-silence needed some getting used to. Where as at the turn of the year, I would have to regularly check her colour with a torch in the middle of the night (she had obstructive sleep apnoea caused by the large tonsils and adenoids and a great fear of mine was that she would pause in breathing and just not start again. Her breathing was really quiet noisy and so the moments when she did apnoea were almost deafening in their quietness) I was now prodding her every now and then to check she actually was breathing, such was the change in noise levels! Once we had got through the recommended 10-14 days of rest, there was no stopping her. Especially as we had our first real holiday in the first week of August!

We flew down to the south west coast to spend a week with my parents and godparents in a holiday cottage by the sea. My parents go annually, and have since they met, to a folk festival on the coast and we took full advantage of there being a spare room in a picturesque seaside town with nearby playground! It was wonderful: we spent 7 days surrounded by friends and family, with sunshine, swings and company on our doorsteps. We also got to meet fellow preemie mum and blogger Diary of a Premmy Mum and the delightful Smidge, which was very special to finally meet someone you connect with 'virtually' who knows so much both about your life, but more importantly understands what you have been through and what it means to come out the other side. We slowly made our way back north, but via two more friends to stay with for a few days each that we rarely get to see due to the distance. The last friend we stayed with was one of my closest university friends, now herself a single parent with a beautiful little baby boy and it just rounded off a perfect holiday with someone I adore and who knows all too well the bringing up of a small person alone.

And then, at the end of August and beginning of October, something amazing happened.

Wriggles took her first independent steps. At just shy of 3 years old, she stumbled across to a toy, beaming from ear to ear. I hadn't known she would be able to so soon; I and the physios and doctors had wondered that it might take months or even years longer. But she showed her silly muscles and cerebral palsy just who was boss: her. Not just that, but suddenly she started putting words together, words that just kept tumbling out her mouth. Words I knew were there but for months and months she had been unable to speak and words we couldn't find signing for. And as she let loose the conversational floodgates, with practise her speech began to sound clearer so that other people could understand her too. I always knew she would get there in her own time and I knew it would be very emotional after the pure fight she has had to put up, but it just floored me. To see what she could achieve but above all how pleased she was. You assume they get frustrated, but if they haven't had a skill can they miss it? Judging by her little face every time, she was as happy as I was that she was getting there, if more so. It made the hours of therapy, the tears of heartache and the sleepless nights of anxiety worth it in a second. Of course I would have loved to re-write history and erase the premature birth and magic away the cerebral palsy and development delay, but in this world you can't change the past-but you can make some enormous strides forwards!

Wriggles turned 3 in September: it was bittersweet as usual with sharp memories of the day she was born and the terror of her delivery and subsequent hours not knowing if she were still alive, but fresh with her new skills of walking and talking, it made me proud to bursting point of how far she had come over time and the limitless possibilities she could yet achieve. Disabilities aside, she is a massively stubborn child with a keen streak of independence and knows exactly what she does and does not want, which many a time can cause friction but at the same time can really pay off in making big progress. At the end of the month she started preschool. The idea of preschool had plagued me with so much anxiety, not least because there were a few weeks whereby it appeared that the professionals who support us all appeared to be on completely different pages as to how we would manage preschool and what support may or may not be in place. Luckily it was resolved and after a good bit of prodding, we won funding for a 1:1 support worker for Wriggles. By the time preschool came around, we were both totally ready. The difference in the 10 weeks since we signed the paperwork and when Wriggles' first day was was astounding. I think she would have coped if she hadn't been taking some independent steps and been able to verbally communicate but there is no denying that achieving both those things made the transitional much easier for everyone involved. I wasn't surprised at how easily she settled and familiarised to the new routine and with both excitement and some sadness, accepted just how quickly my little girl who once fitted in my hand, was growing up.

On one hand, I was and am, very excited for this next chapter in our lives as Wriggles is thriving and growing up. And on the other, as silly or selfish as it may sound it just floors me. The last years have been a struggle. There have been some truly special moments and I would not trade any of it as every day has been with Wriggles who has changed my life upside down, but there is no covering up that even on the really good days: life has not been a bed of roses. I hadn't been prepared for parenthood 3 years ago and I was definitely not prepared for single parenthood. When I previously used to think about the future, bringing up a family of one, two or more on my own just did not even get a look in as even an outside possibility. Sometimes though, life has other plans and you either get on with it or you don't. And with some hindsight, it has been non-stop. Hospital admissions, my own mental health battles, health scares, lifestyle changes and the huge unknown that is a child's development when they have problems to contend with...it leaves you running on adrenaline just day to day. Because often if you stop and think, really think about it then you can tip over and fall into a big black hole. But if you keep running, keep savouring those moments of pride, those small steps, those little snippets of ordinary that you treasure for years to come; then that enables the days to keep changing, the world to keep turning and suddenly you get to a point and think, but in a really good way, "how the bloody hell did we get here?". I certainly would not have seen this point when we came home from NICU or even a year ago or less. And that is where I found myself as Wriggles happily settled into preschool and I suddenly could think and open my eyes a little wider. It threw me: for some reason it really rammed home this line we have been straddling, this balance of needs and wants, of what is expected and what happens. Things I haven't allowed myself to think about or miss because I had a very big priority who needed a high level of care all the time. And while that hadn't all just gone away, the world had shifted a bit and the path we have been walking on seems to have gotten wider as there are more possibilities now. As the health and development side of things have became less intense, I find myself floundering a little. I can't wait to enjoy it but a part of me is almost afraid to. Now I can stand and watch Wriggles fly across my vision, giddy with the feeling of being carried by her own two feet, holding herself up tall and proud. It reminds me that that is what I have to keep doing: if anyone can make sure I too put one foot in front of the other and keep going with a smile on my face, it will be her. 

Mixed Start to the Week

Yesterday we had a respiratory follow up at the hospital Outpatients clinic. Although we have been busy with home visits for physio and a short speech and language therapy group, it has been a while mercifully since we were last at hospital. Typically, it had to be the sunniest and nicest day it has been in a long while (...2012?) so we set off early, driven by Wriggles shouting "[S]WIIIIIIIIIIIIIII[NGS]" like a mad child and shrieking if I deviated to do anything ridiculous like locate shoes, brush my teeth or get dressed along the way. To her approval we got on the bus and arrived at Leazes Park which is helpfully opposite the hospital and houses two playgrounds and a rather large lake containing ducks, geese and some enormous swans. I've waxed lyrical before about our playground love, but we really can't get enough of them. Due to her lack of independent mobility, few other places or experiences give her an opportunity to let off steam and energy at her pace. Or indulge her scarily daredevil side.

 

 The appointment was a bit of a let down. I was hoping we'd see either our named consultant who took us under his wing last summer and made the order to place the feeding tube, or either the other senior consultant or SHO who both know Wriggles very well and whose judgement I trust, which is more than I can say for some of the paeds we have come across. Instead we got a new registrar, who was very nice but also very new and said "Ummmmmmmmmmmm..." a lot. In the end, she waited until one of the senior consultants was free to run things past him, which although was reassuring and improvement from some previous appointments, I'd have preferred to wait and have the actual appointment with him to talk things through myself. 

The upshot was that until we have the consultation with ENT about removal of tonsils and adenoids, respiratory can't really move on with much as things are currently stable but could be improved. Since the tube was placed, the admissions and chest infections have decreased massively. We have had one queried aspiration admission, one viral admission and otherwise have broken the cycle of hell and managed bugs at home...albeit only just sometimes. Now that side of things seems better controlled, it has become increasingly obvious that reflux flare-ups are very much interconnected to chest health. It is quite common to become quite reliant on salbutomal inhalers during a bad reflux patch and Wriggles quite often acquires a blue tinge around the mouth when refluxing. So her reflux meds have been upped and the ENT department are being chased. Wriggles mouth-breathes a lot and constantly snuffles, which could be a symptom of her over-large tonsils and adenoids at least partially blocking her airways. This could potentially be putting extra pressure on her diaphragm, aggravating the reflux. So hopefully, taking them out will make an improvement. Please. If not, a fundoplication was mentioned again-although we have some bridges to cross before that luckily. 

Annoyingly, yet another video fluoroscopy referral has got lost in the system, and until that which will assess how "safe" her swallow is now, we still are a no-fluids-orally zone. By the time we get the VF done, it will have been over a year since Wriggles drank anything and I very much hope our feeding/speech and language therapist comes out the woodwork to help with that as I suspect it will not be easy. She never could drink from anything but a particular teat on a bottle and never thin liquids as she choked, so I do really hope we won't be left alone to learn it all from scratch, especially as a will-be-3 year old is a different kettle of fish to an under 1. After clinic running over an hour late, we then had a nice long wait to pick up new dosage meds from the hospital pharmacy. What a treat.

Frustrated by waiting around, being made to sit in her buggy ("WALK!"...which I wouldn't mind, but she tires after a very minute distance thanks to the cerebral palsy and more common Toddler Syndrome, thus making 100 metres a game of musical buggies) for part of the ride home and life in general, Wriggles resumed her tirade of shouting incomprehensible gibberish non-stop, so once home in desperation I let her torture wash Long-Legged-Mouse who has become the victim for most mischief since Noodle the beloved hedgehog got felt tipped and had to spend the night in the airing cupboard which vexed both Wriggles and no doubt him. In the last week, Long-Legged-Mouse has been attacked with Grandma's blusher, repeatedly drowned and nearly been fed to some giant fish.

I don't know what or whom was wetter; Wriggles, Long-Legged-Mouse, me or the kitchen floor, due to a faulty plug in our water table. All were thoroughly soaked, but it used up a fractious hour and finally removed the traces of makeup from poor Long-Legged-Mouse. I hung her out to dry by her tail (it's a tough life) and filled up a large plastic box with water and bubble bath, stripped off the sopping toddler and let her have an impromptu al fresco "bath" just outside the kitchen door on what I fondly call our balcony. Sceptics might call it the top step of the industrial stairs down to our concrete yard. 

To round it off, we kindly treated both our street and the back street of the next one down to my tuneless 'Five Little Ducks' accompanied by my backing-shrieker before Wriggles paraded her bare bottom for all to see. I wish the NHS would provide at least a complementary bubble bath or such for Mouse Washing or such activities needed post-appointments. I can quite empathise with Wriggles that she does get very anxious during them, particularly when they insist on weighing her and checking oxygen levels and thus is a nightmare as she can't quite calm herself properly after them, but it doesn't make looking after her any easier when she just shouts gibber until bedtime as a result. Maybe next time I'll put it in the comments box.

Mental note: request next hospital appointment to fall on a truly rubbish WET day.

Aftermath

After Monday's letter about the MRI results, I felt hit by a ton a bricks. I don't know why exactly and to be honest a belligerent part of me thinks, look does there HAVE to be a reason? I think it is though because largely I don't have to daily face up to Wriggles having cerebral palsy. I really hesitate calling it a disability or special needs, but have been doing some thinking recently and I guess, like it or lump, that is what it is. At the mild end of the spectrum, but definitely something additional to your average cardboard box menacing child. Of course, we have the daily development delays and tube feedings and pretty frequent contact with medical professionals, but it isn't very often that the words 'cerebral palsy' are mentioned or an in depth discussion is called for. Alluded to certainly, and in many ways her treatment is plotted around it, but the words and discussion of the causes are often dodged largely because it's really not necessary to have a klaxon screaming SHE'S DELAYED! SOMETHING WENT WRONG IN HER BRAIN! I know she has it, doctors know she has it, nurses know she has it...why keep dropping it in conversation if you don't have to and it isn't going to help? The most frequent contact we have is with NHS physiotherapy for children who treat things holistically and symptomatically. So really, they are the ones who deal with it most closely yet because of their approach, it is beside the point what the diagnosis is because they concentrate on making things more comfortable and facilitating development and independence.

 So when we directly deal with it, it feels a bit weird.

It also brings back wave after wave of guilt. We don't know why she has it, but you can bet anything it is to do with her birth/prematurity. I know, in that rational world,I can't change the past and blame is futile. It doesn't stop the emotional sphere of the brain running wild though and slashing the bridges of sanity and reason you have built up. And normal parenting-guilt goes overboard. Am I being proactive enough? Too much? Should I be asking more questions? Looking outside the NHS package? Researching more? Forgetting more? When you start looking there is just so much information and like many things much of it is subjective and conflicting. So do you turn off and trust those caring for you whom you see every few months? Or do you try to forge your own path and hope you get it right? What is the middle ground and how do you stop going mad thinking?

I do my best not to dwell too much on the causes most of the time, the wording, the terminology. There is no point, it is irreversible and like so much of life, it is about what happens now that counts. The young developing brain holds so much plasticity that making an effort now can make a difference. It can't magically create strength where there is none or suddenly whip up a new skill out of nowhere, it can't cure but it can help forge new connections and slowly build up bit by bit to make things just a little easier. So that is what I'm trying to look towards; to focus on. The future. That scary unknown future. But that scary unknown future I could influence. It is just the past has a nasty habit of coming up and biting you in the metaphorical arse when you aren't looking. And that is what I find tough. That and continually accepting our world is not the world other parents dream of. It is like having a secret key to a new world and balancing on wall between the two, moonlighting. It's not a worse place, just different. And after all this is pretty good compensation...

 

Counselling

When you have a baby, one thing you do not normally associate is starting counselling sessions soon afterwards that are in direct correlation to these events. Then again, for too many parents "normality" is thrown out the window. When you have a sick or premature baby or a traumatic birth, the rule book is ripped from your hands and it seems someone is laughing cruelly. You have all the same tools as everyone else but something is missing that you cannot quite grasp. I imagine even the healthiest baby, smoothest birth and both fleeting of baby blues produces a confused, knackered, upset and bewildered parent. But tweak some factors a little more and it can feel like you are walking between nightmares and the best thing in the world. You know you are blessed, are grateful beyond belief, can tangibly reach true love...but that is only one half of it. And that fact casts you even deeper down a path of gloom, grief or blame. Sometimes all three.

I was first referred for counselling whilst Wriggles was still on the NICU. We were beginning to be on the home straight which adversely became the patch I began to fall apart. I could not fathom being able to care for my baby at home in the way the hospital did. I got nervous. I got emotional. I cried.  lot. When I was trained in resuscitation and infant first aid, I broke down completely because it was too close to home to the CPR I'd had to try on my minutes-old daughter before the paramedics arrived. Then it was confirmed we would go home on oxygen. The sky fell in. Any notion of being able to turn our backs on prematurity, run for the hills or grasp in the dark for any kind of normal baby-magazine like existence was snatched and I was going to the dragged kicking and screaming into the acceptance.

Initially, I was not overjoyed about being counselled. It seemed like another thing to chalk up to failure. You can't even just have a baby? What sort of a mother are you? That first session I was very mechanical. I had got to the point of facts, just facts. Name. Age. Date of birth. Feelings? No, feelings are tied away. Locked away and thrown the key into the abyss. I don't recall a lot, but I do recall the kind lady saying with clarity at the end "you need to allow yourself to feel."

But I couldn't. I would have the odd breakthrough crying sessions, I would tell our story, I would go through the motions, but it was like there was a solid wall. I was talking but there was nothing behind the words. I would not let how I felt about what I was saying out. It was too dangerous. There was a torrent of emotion somewhere that could quite possibly destroy me. Then after we got home, my daughter got sick and then we came home again, I went downhill very fast. It was like a swift plummet, being winded in the gut. I did ask for help then because the only glimmer of rationality left told me that if I didn't things could get ugly and I was the sole person responsible for my daughter and owed it to her.

I was even less overjoyed about the idea of taking medication. To have to be medicated for being a mother? Despite gentle professionals saying but a mother who has been to hell and back, it just didn't sink in. But I took them, thinking what had I to loose. To my surprise, they helped to dent the cloak I had surrounded myself in. They let in tiny chinks of light and slowly rescued some energy, some drive, some routine... Alongside this I also saw a very well meaning counsellor who patted my knee, passed the tissues and said "Oh goodness me, I couldn't have done that" a lot, and also thankfully stepped up sessions with my original counsellor who had importantly been with me the whole time. She has seen Wriggles at the point of being critically ill, in NICU, at home, playing-she had seen the highs, lows and mundane of our lives. And that went a long way, not least is gaining my trust. She had also had her own premature baby twenty years ago and didn't need telling twice about what followed. She listened to me, said some very wise things and never once told me I was a bad person.

Did she fix everything? No. Did she make things more bearable? Very much so. She embarked on a long quest to try and stop me blaming myself and inflecting blame, guilt, remorse and turning these things into long strings of anxiety and fear. She didn't put a full stop to it all, but she did greatly stem the tide and genuinely seemed to care that I wasn't putting myself in torturous circles. The day before Wriggles' second birthday, she turned up at my flat with a birthday present and card despite not seeing her for months. I was so touched that she remembered and cared enough when essentially we are but a handful of her clients. It is little things like that which slowly help pick back up the pieces and restore your sanity bit by tiny bit. Couselling may not be a magic answer or quick fix but it is a service I believe that all parents or family members in difficult situations should be entitled to as just reaching out can remove some of the bricks of your burden. Without it, I fear I would have fallen very low and very badly. I don't know how things would be now if I hadn't have had that chance.

I wish I could say that presented with the tools of good counselling, the caring arms of supportive friends and family and a good overview of CBT that I am completely all done with the past. But this little blog is testament that I am not. Nothing is that simple. Things may be a lot better but there is always one foot still in the past, stuck in a puddle of murky memories. And sometimes I slip and fall straight back in and need a helping hand in climbing back out. All too quickly, the tendrils of anxiety, paranoia and remembrance can curl round your being until you are caught fast in a trap of fact and fiction and have to unravel what is reaction and what is irrational. These last weeks I have been struggling again, feeling the fight ebb out of me. I guess the difference is that I know this isn't forever because things have improved before and will again; not that it makes things feel any easier day to day until we have ridden this out. The mind is a powerful tool indeed.

My Happy Place

Giving In

In July, I accidentally came off my antidepressants that I had been taking for over a year following a diagnosis of Post Traumatic Stress with secondary depression and anxiety. I had been feeling a lot better, was managing day to day life and my own feelings and so when Wriggles was rushed into hospital, asking someone to go back and collect them for me was not even in my top ten of priorities. In fact, it wasn't until pretty much the end of the stay did it occur to me I didn't have them. When we did get home, complete with NG tube, I was really a bit of a mess to actually register whether I should re-start taking them and was quite distracted by the fact that we had appointments and community nurse visits coming out our ears and that my mum came up for a fortnight to keep an eye on us (ie. to make sure I wasn't tipping the loony scales). I was so fatigued throughout the summer months from admissions, then surgery, then getting to grips with a gastronomy tube and then coming to terms with the CP diagnosis that the world was slightly spinning. Who wouldn't struggle? I got dressed (if mis-matched), left the house (because I couldn't bear to always stay in) and Did Things to try and amuse the toddler. We had some fun, survived the second birthday and then landed in hospital again and since then I have been struggling to bounce back. After a few horrid days, it all subsided and I wondered what I was making the fuss about. But since then, it has been creeping back up on me like a little dark cloud hovering over my head following me around and is not going away. I feel like I am teetering on a tightrope wire over an abyss, about to fall any minute into an untold pit. I can't switch off the worry, both irrational and rational, however hard I try. I can't relax or concentrate.

On Saturday, we went for a Halloween soiree (read: small gathering of 4 toddlers and cheese on cocktail sticks at tea-time) and I had a G&T. Because my previous medication didn't mix with alcohol, it had been virtually two years since I had had a drink with the exception of the day when I got the letter confirming CP where I drank enough rum to feel completely numb and send me to sleep. So, understandably, this one drink sent me a little squiffy. As I walked back at around 8pm with the Wriggly one in her pushchair dressed as a cat grinning madly, with firework displays going off around me, it felt like walking on air. I wasn't in ecstasy, just pleasantly cushioned with a warm and fuzzy feeling enveloping me. I didn't worry, I didn't obsess. And then the next day, it hit me. I used to feel like that at least the majority of the time. I used to feel like that pre-child. I used to feel that way when my PTSD and it's entourage was being effectively dealt with. I used to feel Alright, I used to feel Relaxed, I used to Smile without force. Maybe I didn't float everyday, but I didn't drag.

So I am giving in. I am going to plead with my GP to let me try medication again. I feel like I am struggling and I need a cushion to get me through this next bit. I have been patiently waiting for this 'low mood' to lift and it is doing nothing apart from drawing in closer. Memories, feeding tubes and hurt doesn't go away just like that. But if I could a little less like a zombie, that would be marvellous thank you very much. Please.

Sticking like Glue

The other day I wrote about my sleeping arrangements and my fear of being far from my daughter at night. 

I like to think I'm going to be a cool mum, but I'm having to face up to facts.

I am terrified of being apart from her.

It's not a desperation to apart exactly, more like a terror that something awful will happen and a completely irrational feeling of betrayal. She would be fine, after all, I worked 3 days a week between when she was 8 months and about 21 months. She is now more reluctant to part but is such a sociable thing. It's me.

I thought I had put Neonatal and everything that followed behind me. I received excellent counselling until very recently, took a course of Sertaline (a SSRI anti-depressant also used for anxiety and in my case PTSD) and then unfortunately this summer happened and we got a feeding tube, starting diagnosis and reunited with some of the PICU consultants although thankfully avoided their unit by the skin of our teeth. Right now, two years ago, Wriggles was in NICU and this anniversary period is a funny old time. Full of flashbacks and bittersweet pride. Sometimes I think I over exaggerate the past, and then find a scrap of something from the time and it hits me again like a ton of bricks. She was that small. She was that sick.This lunchtime I was looking at her first nappy size given to me by special care when we left. I was shocked how small it was, fitting in the palm of my hand. I remember her looking dwarfed in it. Curled up in a special nest in an incubator, small, so small, with a huge chunk of machinery attached breathing for her. Then a little white hat keeping the CPAP apparatus on so she could breathe with some help. The feeding tube in for weeks and weeks because she was gestationally too young to have developed the suck/swallow reflex. The weeks and weeks of one cuddle a day, at 3pm sometimes for less than fifteen minutes. Oh god.

When I went back to work, I made myself because as a single parent I felt I had a duty to provide as best as I could and also not to conform to stereotypes. I did enjoy aspects of my job, but after giving birth so much felt like clock watching. There were days I loved and days I hated. The worst bit every morning was saying goodbye at the childminder's. I never dawdled leaving the office, but pelted back as soon as I could. Since being made redundant, Wriggles' needs are arguably a little more complex. Aside from the feeding tube there is a greater understanding of why she gets so poorly, which in itself comes with more caution to be exercised. 

Since she was rushed to hospital late July, we have not been separated for longer than half an hour on a sparse handful of occasions. 

This weekend, I was supposed to be travelling for a weekend away probably involving some babysitting.

This evening I broke down and admitted how scared I am of loosing some control and not being within running distance of my daughter. I have not had a panic attack for a long time, but I sat here, dizzy, tears streaming, my heart racing and my throat tight and painful. It's too soon. 

My worry is, when won't be too soon? She is now 2 and it's not like we're going to be able to forget prematurity or hospital visits for a long time, such are her medical conditions and health. I don't want to become a paranoid overbearing parent, embarrassingly clinging to her trouser leg in the playground. I want her to keep her independent streak that makes her so her and that I cherish for her beautiful personality of her own shining through. I'm going to have to let go in small amounts at some time in the not too distant future, for nursery, then school and my eventual return to work. I'm going to have to trust other people to do their best by her, to learn her cues, to know her danger signs, her quirks, her needs. But not yet, not now. She is still my baby and I am still cocooned in the after-effects of scare after scare. I need to build myself up gradually and look back out into the light. 

I just hope these needs of mine don't step on her needs of finding out about the world without me.

Confession

I have a bit of a confession. I think it's a bit shameful; though nothing in the slightest bit gossipy or interesting.

I have a perfectly adequate bedroom and a perfectly adequate bed. It is right next door to Wriggles' room and there is but a wall separating us. Theoretically.

Yet, since about the end of July, I have been choosing to sleep on an airbed on the floor of Wriggles nursery room. 

I moved in as a temporary measure before we ended up in hospital for the millionth time when she was poorly, as she needed monitoring very closely and was awake most of the night crying and coughing. Then, we we abruptly came out of hospital over a fortnight later complete with feeding tube, pump and equipment, it made sense to sleep in with her in case she gagged and was sick mid-night, or the machine started beeping or the feed ended, saving fumbling in the dark, walking into doors or missing any of these cues because I couldn't hear.

I think it's come to the point now, nearly a month after her PEG tube was placed that it is now more for my benefit and comfort than hers. If I was worried about noise, I have a baby monitor, and really my flat is not huge. I know she would be be quite fine if I wasn't there: it's me that might be a wreck. It sends me into a panic, the thought of being apart. Maybe that isn't entirely true: what I am scared of it that something will go wrong and I won't hear. When I am in touching distance of her, there is not a lot I miss. The slightest whimper and I can be there. If she rolls over and gets tangled in her tubing, I can drag myself about a metre to the left and untangle her. Simples.

But what if I didn't hear next door? What if she started labouring breathing? What if she was sick? What if she paused in breathing? What if, what if....so many what ifs. So many what ifs that are unlikely but still there. Because after the last two months, if it isn't a dead cert, then frankly I'm not interested. I don't care for your probablys, your averages, your statistics, your maybes. I want definites and I want to know that I will be in the right place and the right time. I am sick of taking chances and of looking at even minuscule risks. I am done with what feels like playing games with my little girl' health. 

I'm not sure it's healthy, but I'm not sure I can move back yet either.

Duck

Some days I am like a duck on water, (I was going to say swan but am nowhere near that graceful) on the surface serenely paddling along taking it all in my stride, quacking at appropriate moments, dabbling for leftovers...but on the underneath, frantically paddling to stay afloat and not sink however much I would like to drown in self pity and stick my head under and not come up again for a long long time. Today I am an upside down duck.

There is no particular reason, apart from throwing off a slight cold myself and taking care of a sick child, and carrying on with everything we do everyday in it's tube-feeding, physio-exercises, refluxing glory...oh yes actually, they look some very good particular reasons.

I AM ANGRY. VERY angry. Not at someone or anyone or anything. Just at the sheer bloody unfairness of some things. I know some people believe things happen for a reason. For better or worse, I am not one of the those people. How can suffering in any guise be for good?

Two years ago, my little girl was critically poorly in a plastic box, her little bird like body being pushed to it's physical limits to stay alive. I had held her once.

Two years later, she is lovely beyond belief, full of beans but still needing medical help in different forms to ensure day to day is comfortable and monitored so that things are not getting out of control. Medical science is amazing, I just wish we didn't need it. I am angry that somehow, she came to need it. That she needs tube feeding to protect her lungs, that she needs medicines to stop stomach acid damaging her oesophagus and airways. That she needs exercises to stop her legs, feet and hips from tightening and ceasing or delaying development further. Some days I am so TIRED of accepting and riding the wave of all this vital and gratefully received help and I just wish upon wish things were different.

That she would let herself eat. 

I am her MOTHER. Why can I not feed her in the way we take for granted? 

I want her to experience the delights, the sensory, the social aspects of eating. The pleasurable rituals we play out daily, the tingle, the sharp, the smooth textures, the range of tastes from surprising to comforting. The salivation that comes from it. The pathways our brains make from it. I want her to be able to go for tea with friends. To use food as a means for happiness not just necessity. 

Some days it pains me to keeping trying when she gets so agitated. 

Some days I am very angry that parents have to fight to be taken seriously. It has taken 2 years to finally get doctors to take her reflux seriously and to get to the point where she is 100% tube fed and will be for the foreseeable future. Because otherwise, her already vulnerable chest is at risk. Today I got a review letter confirming that the bronchoscopy, her pharynx is hypotonic (pharyngomalacia: basically "floppy", narrowed and prone to collapsing under strain). This was briefly noted back on PICU when she was intubated at 7 month old! How has it taken until now to get a name? Unsurprisingly, this can lead to feeding problems. Well who would have guessed?!

Mostly I am just furious that things are not straight forward. ALL I WANT IS MY CHILD TO HAVE A PERFECTLY ENJOYABLE UNCOMPLICATED FUTURE. 

Is that too much to ask?

Stuff (and nonsense?)

WHY is there so much STUFF and WHY won't it stay where I put it? How come I end up with clothes everywhere, socks stuffed into every crevice and a never ending trail of washing and dirty mugs?

Oh wait I know.....

...one certain wriggly toddler type, tearing through the house like a tornado and constantly demanding attention.

"Babies LOVE watching their mummies doing things around the house," my mum said confidently. Well, no one seems to have told my baby and a straw poll of friends with babies of similar ages suggests likewise, or at least if the above statement is true, my mum has got selective mum-amnesia whereby she means that either very little babies not into arguing like watching things like the washing machine or much older toddlers who want to help. Wriggles falls nicely in the middle, in the stage that cannot be left alone for a millisecond otherwise the soap dish ends up down the toilet or she is taking things out the bin, one by one. She doesn't always want me to play with her, but she wants me to be in the background hovering just in case or to show me her new achievements ("since when could you climb up onto the sofa...?!").

"It's a case of showing them who is boss."

Right. Yes, I can see that. Sort of. Except that while you are showing them who is boss, the washing still isn't getting done and you have gone from playing with the messy child to actively provoking arguments with them in the intention that it may buy you some housework time. Or am I going wrong somewhere...? 

I suspect that this is a phase like all the other tiring phases that will pass to be replaced with a new irritating/exhausting/delightful phase like every other time. The sort of phase where it would be really good if there was two of you (or at least two pairs of hands) and you could dredge up some energy from somewhere to either a) do the washing and b) care about doing the washing (washing is interchangeable with picking thing off the floor/hoovering/folding fold-able things/brushing your hair/making dinner that is not just cheese on toast/finding a matching pair of socks/returning phone calls/leaving the house). However much I tidy and try to organise, within days it is back to looking like someone has gleefully chucked things to all four corners or brimming with piles of things removed from floor level to high up....oh wait, that is what happened. 

Now just to find the strength to go back to square one and start all over.

Coping

I must admit today I was a little taken aback today.

I was speaking to a woman about a genuine housing issue, which we agreed on and then she came out with:

"You know, every time I come and look through your window it looks really messy and you seem very chaotic. Are you coping?"

I felt instantly hot.

And a bit like my mum had caught me doing something I shouldn't have.

Then I felt cross.

Is it not bad manners to go deliberately looking though people's windows when it is otherwise avoided?

Was she actually trying to help or was she being a nosey bat? Previous experiences with her and other residents experiences with her very much point to the latter. However innocent until proved guilty. Maybe.

"Is your Health Visitor helping?"

I gabbled some things and bade a quick goodbye, shutting my front door and smarting. I didn't need to look: I knew my front room was a mess. I have always been messy and struggled to stay on top of tidying up. Recently has been extra hard, as I have just felt my bones so heavy with exhuastion that it makes me feel a little ill. I'm really not deliberately slovenly but maybe I could try a bit harder. The trouble is, in the daytime as soon as I put something away, Wriggles will empty an entire box, and at night, all I can do is collapse. The one time I did try to have a proper evening blitz, Mrs Downstairs complained about the noise. Am I just making excuses for what has got out of control?

Ultimately, I know that I will tidy it spick and span by hook or by crook, whether by putting Wriggles in a high sided box or by irritating Mrs Downstairs. I will because it really is a mess. At the moment, the Wriggles friendly bits are not too bad (excepting all toys she has strewn about and untides as i go tidying) but even I won't let it get to the state where it is hazardous for her. But 'my' bits, are a little shameful. So naturally I am here writing about it rather than tidying. I do care. Sort of. But also, quite a lot of me doesn't.

Am I coping? Yes, I would say I am. Coping. That is all. I wouldn't say I am doing much more because clearly, I have things to get on top of before I can rise to the next level of whatever comes after coping. I know that I am not not-coping because not-coping is horrendous. Not-coping means not even noticing mess or not caring about anything. Not-coping means barely being able to move. Not-coping means not speaking to anyone but Wriggles or barely leaving the house. Not-coping means panic attacks and horrible thoughts coming thick and fast. So I am coping. I am able to keep not-coping at bay and get through the day. There is a start, a middle and a finish. Not-coping eclipses all time. My coping might look like someone else's not-coping, but I know for me, that is enough. After a much better time recently, I know I have taken a bit of a stumble suddenly again. But I know also I will pick myself up sooner or later. And that is coping: knowing there is not just a tomorrow but a day after that too.

When people, other than very geuine people close to you who would help in an instant, ask the dreaded "are you coping?" question, I find it a little irritating. Mainly, because exactly what are they going to do if you say no, no I'm not?

Would they for instance, find me a partner?

Would they pay for a cleaner?

Would they give me an extra pair of hands?

Would they find me more hours in the day?

Would they be able to answer the eternal question, of why toddlers empty things?

Would they iron all my fears out straight?

Would they remove my scars of bad memories that don't go away?

Would they teach my daughter to eat?

Would they wave a magic wand?

Would they take some of my tasks off me so I had a little less?

Would they give me just half an hour to help?

No, they would not.

They would look a little bit uneasy, like my Health Visitor, and maybe pat my hand. And then they would go and think thank goodness it's not me.

So I'll just keep on coping until I'm better than just coping. And in the meantime, I might even finish the washing up.

Tether

One of the cruellest things about parenting and responsibility is the accompanying guilt.

Why aren't I doing it right?

Why is [insert anyone from baby group] so good at this and I am not?

Why do the creatures we love so much try us?

Why do they press our buttons when we just want the best for them?

Why can't I do this?

When can I run away?

What is wrong with me?

Some days it is relentless in it's let up of internal criticism. Some days I just want to walk out the door and I run and run until my feet fall off. Some days I want someone 'proper' to take over.

Of course I don't.

The furthest I've ever run to is my bedroom; just metres if that. I won't even lock myself in the bathroom.

Some days I don't know if it is being "just a mum" or if it is a throw back to the days of NICU and the accompanying uphill struggle that has been oral aversion, recurrent admissions and a scary unknown future. I can't forget. I wish I could. But the pain is still there in the background, lurking. Waiting around the corner. Waiting for the light of my life to close her sleepy eyes when the grief will pounce and smother me until I can fight no more.

I thought I had this depression, this rememberance, these experiences under control. Somehow, behind my back they have broken free of their shackles and crept up to tap me on the shoulder.

I am so tired.

Today it was all I could do but to curl up in ball on the floor while Wriggles pulled everything off the bookshelf half-watching In the Night Garden.

I have no idea what Iggle Piggle did with Upsy Dasiy. My eyes were closed. My brain was numb. I felt nothing, saw nothing, heard nothing. I should have been awake, alive. I should have been playing with my precious child. But I couldn't. I selfishly couldn't find the strength to even sit up or mumble through The Very Hungry Caterpillar.

Why is it all so hard?

When can I move on?

When can I get it right?

When can I have happy moments all day and everyday?

If not for me, then for Wriggles. Please. She deserves it.

Happy

This evening, I was baking cakes (it has to be plural as my success rate in the baking department is highly variable. Tonight it was mercifully two out of three), jiggling around wearing an apron to some favourite music and realised that I was feeling something I perhaps hadn't felt massively for a while when on my own:

Happy. 

Content. 

Not sad. 

Not scared. 

Not anxious.

Not regretful. 

Not guilty. 

Not remorseful.

Just pleasantly chilled and covered in flour.

When I am with my little girl, I am generally fine. It is when she goes to bed, that the thoughts come tumbling out one by one ambushing me until I feel like keeling over with the weight of it all. Everything becomes mammoth, everything becomes my fault. My strength drains away and I have no will. But tonight, I feel light. Light and fluffy and hopefully the cakes in the oven!

Some good moments from our week:

Hedgehog comes for a day out

Definitely NOT afraid of the big bad (stuffed) wolf

"Helping" sorting out for the Tiny Lives sale fundraiser for our NICU

All in the Mind

The human mind is incredible.

 

It is such a sophisticated thing and the most sophisticated thing is, you can't even see it. You can see the brain yes, and really clever people with whizzy machines might be able to see cells and neurons but what does our mind, our thoughts, our intellect and personality look like? Does it look different if we are ill or sad?

Mostly, the mind is incredibly clever and benevolent.

Sometimes it is also incredibly cruel.

You only have to turn on the news to see what human thinking and consequently actions cause sometimes. It might be one person or a collective. It might be one spark or a long thought out plan. And less newsworthy, people out there every day struggle with mental health when their mind is not 100% their own. It might be fleeting; it might be lifelong.

After my recent wobble, I have been feeling so much better for having some time off work with Wriggles. It really helped me reaffirm myself as Alpha Mama (alright, then: a mama at least) and in that month, I did more mum-friendly and social things than I had in over a year. I returned to work as I knew then that redundancy was imminent in around 6 weeks and figured that I could do that, knowing there was an end. I hadn't given up the idea of continuing working if something else came up and I could find appropriate childcare and I was getting maybe a little cocky thinking I had put the worst behind me. Largely, I think the "worst" is behind, just the tough bit that is easy to forget is that there is no magic moment when your feelings go away in a puff of smoke. Nothing has to happen for them to creep back out again from where they have been lurking, but sometimes they sneak up unexpected and uninvited as if to remind you who was once boss.

I had a silly hour or so today. It wasn't quite a panic attack, but was unsettling to say the least. I had a rare few hours apart from Wriggles; we had a lovely lunch together (eaten: one fromage frais, a dollop of banana & custard, several rice cakes, the corner of my panini and some multigrain hoop-type-snacks) and I dropped her off at the creche. She barely looked up, having befriended one of the staff instantly. I kissed her, once, twice, needily three times and still she didn't flinch. Off I slunk, with my tail between my legs and my metaphorical ears wilting.

She doesn't love you.

The thought hovered in my head. I furiously brushed it aside.

She doesn't care.

She's just independent. And sociable and friendly and a toddler for chrissakes. They all go through mad phases.

You keep telling yourself that. How do you even know she realises you're her mother?

All babies know their mothers. She would have known my voice, my smell. She settled with me and fell asleep in my arms.

She was born early not long after developing those senses and lived in a plastic box for two months.

That didn't stop me loving her and telling her I loved her. And once she came out and came home, I didn't stop holding her and being as mothering as I could.

I'm not talking about what you feel. She wouldn't care if you walked away now. If you went and never came back. She'd be fine. She'd still smile and giggle and laugh. How do you know she would miss you?

How do you know?

Would she?

I wish sometimes there was an off-button to silence minds.

As anxiety and growing hysteria with a growing conviction I was unwanted swept over me, I could feel myself getting light headed and shaky. Walking past a window confirmed I was as white as sheet and looked peaky to say the least. I honestly thought I was going to collapse with the intensity and was terrified that after all the good work of being able to separate mad brain from normal brain that I was falling back fast into a barren and bleak pit of despair whereby I couldn't control my grasp of my little world.  

Thankfully, my more conscious and rational self came back not long after it had left and banished any such thoughts, focussing firmly on what was happening right that second (wandering round IKEA, a task impossible with a small noisebag) and the knowledge that soon I was going to be back with Wriggles and she would be happy with that.

And indeed, she was. I picked her and smothered her with kisses and she happily held my finger on the metro home. We "fed" her toy cat rice cakes on the way back and she squwarked with mirth. I was once more myself and let out a sigh of relief and contentment. Now, surrounded by my things with my daughter sleeping softly in the next room, I know all is well. 

A blip. 

A silly blip. 

Philosophically, you could debate the notion of love, relationships, parenting, nature and nurture but I know one thing: I have a very happy little girl and happy little girls do not stay happy without love. Little girls who do not care are not full of smiles and contentment. They do not blow kisses or offer to share dribbled-on breadstick. They might scream and try to climb in the bin and ignore all authorative "No"s and happily climb on anyone's lap, but that does not mean indifference or dislike.

I've got so many happy memories with her, and I hope she has too. I know memory is far less sophisticated in the very young, but I hope somewhere in there, there are recollections of moments prized. I'm not, in them by default as the only parent there day in, day out I hope but because I have earned my place and my reward of my daughter's affection as I have loved her to the ends of my ability and further every day, and done the best I possibly can by her. I may not be perfect, but I will bloody well try to be for her sake. (Allowing bin-and-toilet-climbing excluded of course. That will stay not permitted, however many tears it produces).

Shock

I have suffered with mental health and I have known many other people around me suffer. Some have been classed as "severe" and complex, but it wasn't until the last few days that I saw someone truly on the brink. I have seen and experienced debilitating symptoms, breakdowns in communications and relationships, lack of interest and energy in anything and an acute feeling of helplessness and no future but now I've seen the next step when it gets worse. And it is chilling and sobering.

One of my closest friends has had complex depression for as long as I have known her and over the last six or more years has bounced from psychologists, psychiatrists, counsellors, medication and various forms of therapy. Somewhere she lost her footing and the last few weeks, and in particular, since last weekend had been very bleak. On Tuesday things reached a head and also information was uncovered about the extent of what has been going on, the depths of concealment so she didn't worry her loved ones and the ritualistic obsessions which have defined her existence and either accidentally or intentionally endangered her. Eventually she turned herself to the Crisis Team. It was expected she would be admitted to a psychiatric unit or similar care for a temporary period. Whatever she said to the doctor, she was released for the night and her parents decided to come and take her home. The next day was fraught with meetings and then the act of her leaving. It feels very disloyal thinking how she veered in and out of being herself and would flip within minutes to being full of clarity and understanding to being consumed with pure emotion and reaction and would become almost violent and child-like again. It took a long time to get her to leave her sanctuary of her bedroom, which although was understandable from her point of view, was also necessary for her to move forward. It took sedatives to calm her down and be released from panic attacks, before she was driven off down South.

Those of us close to her feel numb to the level of hurt she has felt and that we have not been able to wave a magic wand for her, and this must only be a fraction of what she has been dealing with in her own mind. To be tortured and imprisoned by thoughts is very sobering, especially when they impact on your physical actions and decisions and cloud your judgement from tiny things to much bigger things. It feels almost very surreal when the situation is real, but half of what the things someone says are not "real" except in the briefest of moments. It is very sad to see someone so vivacious, intelligent and talented felled by essentially thoughts. 

It is scary to have a glimpse of what things could have been like for anyone who has suffered from depression or anxiety. I held Wriggles so much tighter the day it all came to light and have done each day since, and been so grateful I turned a corner. And then wept a little inside, that my friend had not reached out for help or let herself lean on us, the way she has supported me. It is such a strange situation; we all felt so guilty for not realising sooner, not delving, not putting two and two together...but were two and two there? Hindsight is so clear but also mixes up the elements and clouds the reality. And whatever hindsight can throw up, the important thing is the here and now: this has happened, it is what happens next that is now important.


I miss her.


I miss meeting up with her. I miss sitting in coffee shops with her. I miss her coming round and playing with Wriggles. I miss the way Wriggles' face lit up when she was allowed to play with my friend's copious bracelet collection. I miss her gentle demeanour. I miss her humour and our funny jokes and memories together.


I so badly want her to recover and yet I don't know how to help her.


I'm not afraid to put my hands up and say I probably don't have a brilliant understanding of how and what she is feeling. I know how I felt but it isn't the same because my experiences were directly related to very specific experiences. I don't have experience of sedatives being used or the particular problems she has, I don't necessarily understand self-harming and even in my blackest times, I can't imagine being that close to the edge, because I have Wriggles. Who knows if I didn't? That thought conjures up an empty void that frightens me.

It was also a very strange split to see as a parent: partly, I was shielded from a lot of things that our other friends dealt with and saw as Wriggles needed me and partly it was a small leap to be in her parents' shoes. It would break my heart if Wriggles was that poorly and I was that helpless. It was really quite terrifying to even contemplate that her perfect, innocent and beautiful little mind might be sullied by other voices muddying it and planting vicious thoughts. 
I have felt very redundant as a friend. In the old days, I would have been in the thick of helping and doing everything I could; now Wriggles is my priority and that means that both practically and physically I cannot always do everything I would ideally like to. I am doing what I can and sadly, that is not a lot. We have been told she needs space and also time with her family who will for the time being be her primary carers again like when she was a little sick child. Their baby. Hopefully they will be enough so that she will not have to be sectioned, something I know frightens her hugely. I know they will do everything in their power and more and that is a relief to know that finally she is being looked after by the people who love her the best. I know as a parent that there is no stone you will leave unturned in the quest to make your child better, whether it be from tonsillitis or depression!

It won't be an easy journey but one that needs to be taken. This is one where you can't just get off.

Breakthrough with extra ice cream

This weekend something amazing happened.

We were invited to a birthday party.

Now, this might be an everyday occurrence for many mums. But I have been spectacularly rubbish at making and keeping mum friends, my depression and anxiety cutting all ties with rationality and sending my confidence and voice deep down into a pit of despair, cutting off the sunlight. I would shrink from other mums, like a vampire from the dawn. Not at all because I didn't want to be their friend, quite the opposite, but because I would just panic. Why would they want to be my friend? I kept trying to go to baby groups, I would make myself because if nothing else my darling Wriggles has always been quite partial to "borrowing" other babies rattles and charming stranger's grannies. I don't know quite what has happened but somehow things turned a corner and bit by bit I began to talk properly to the other mums and remember their names and stop my jaw dropping the floor if they remembered mine (or at least Wriggles'-it's practically the same thing once you give birth). Then I plucked up the courage to accept invites to coffee and this week, exchanged phone numbers with not one, not two but three, yes THREE mums. And received a party invitation for my troubles.

After this feat of brilliance, I seized the day yesterday and went small-person-affordable-gift-shopping. I wrote (on behalf of Wriggles) a card and sealed the envelope in the hope that if I wanted to chicken out I might reason that that would mean a wasted card. This morning I wrapped up a copy of What The Ladybird Who Heard whilst fending off an energetic Wriggles who wanted to eat the sellotape, and tried to find a pair of leggings that didn't have any food down: a near impossible task. For someone that barely eats, all her clothes are covered in bizarre stains and trodden in crumbs.

As the time drew near I ummed and ahhhed. I felt nervous and began to look for excuses. I could see the opportunity slipping away and in a rare fit of decisiveness, grabbed the A-Z and tried to locate the party location. It was less than 10 minutes walk away. The sun had come out. I was running out of excuses. Wriggles had found a shiny box and was pacified. As long as she was still allowed to hold the box, she was happy to put her coat on. Now I had no excuse. Before the moment was gone, we left. As I walked along the road, thoughts niggled at my brain. Was I going to be the only unmarried one? Were their husbands going to be terrifying? I don't even know why these felt important things. I think the one of the hard things about mental health wobbles are the feelings of inadequacy it cloaks you in. I often have felt conscious of being babyfaced and a single parent and worry that it isolates me. In reality, it doesn't or at least hasn't so far. I have been pleasantly surprised that no ones gives two hoots if your house is magazine-perfect (mine isn't for the record, it is a scruffy flat) or Mr Darcy brings you breakfast in bed. Probably as so many mothers are battling through sleepless nights and chasing around after mad toddlers to rub together enough brain cells to care. It is so easy to forget the two things that unite most parents are their children and the helpless desperation to Get It Right whilst doubt and guilt gnaw at you every time CBeebies is switched on. 

The worries were all unfounded. We had a truly lovely afternoon, the babies all played (relatively) nicely and everyone was so friendly. I hope these are the beginnings of real friendships; even if they are not, I can't think of many ways better to spend a weekend that in the company of some Good Eggs especially when you get two types of cake and ice cream at the end.

Walking back home at 7pm (if you're going to party, you need to do it properly. I'm installing this in Wriggles from an early age) in the golden fading sun, I felt euphoric. It is such a small thing, but for me, such a big step. It felt like I had broke through a fog holding me back and hiding me from the world I crave to be part of, that I should belong to. It made me so happy to feel like I was grabbing life with both hands and loving it, rather than living in bad memories. 

To be or not to be?

Cheerful, that is.

I am currently signed off work to come to terms with and acquire adequate/successful management of my depression and anxiety so that I can juggle both single motherhood and working at the same time. After a slow-building but sick-inducing wobble very recently, I simply could not do both and with no family or back up, it was with both regret and relief that I agreed to forgo a small period of working to make sure I could mummy as best as I could, rather than fall apart and let my one year old take the consequences. I am already feeling calmer, more rational and more positive with regards to the future. This weekend was a stressful weekend, as Wriggles was poorly again, but I am proud to say I held my cool and even made us leave the house yesterday to go to a parent and toddler group we haven't been to before, and speak to strangers. You know what; I think we both even enjoyed it. A breakthrough. Before I could barely manage the duration of such a group without a panic attack or breaking down into tears either and running off (with Wriggles in tow of course!).

Today was a good day.
I had a productive appointment with the psychologist I see.
Wriggles and I went to an art gallery with an interactive pre-schooler section and listened to a story and then played with some blocks, a plastic tea pot and a colour mixing bubble lamp (honestly, that alone signifies a brilliant day surely?). 
We met up with my good friend and had lunch (ie. cake) in the cafe and Wriggles ate half a packet of Quavers (dietician approved. Salt content is soooo yesterday...when your child doesn't normally eat) and consented to having some spoonfuls of fruit and custard too. 
Afterwards we went for a wander in the sun and put the world to rights while Wriggles dozed in the pushchair, wrapped up in her pink coat and spotty socks.

Then I saw some people from work.

It was a bit awkward.

When you are sick and it is not a physical illness with obvious signs, how can you prove it? Answer, I haven't a clue. Answers on a postcard please. I felt a fraud. I know I am not, but I still felt one. Do they think I'm making it up or exaggerating? Do they think I just don't care? I worried and wondered if they would say anything to my seniors back at work. Silly, even if I was at working, Tuesdays are my day off anyway, why shouldn't I be out?

There is a real misconception that depression means a constant state of melancholy and wringing your hands. Depression can actually manifest in many other forms and is very changeable. You can have several good days followed by many more terribly bleak days. You can have several good weeks, followed by despair and isolation. Depression is not just unhappiness, it is more complex. Depression is always there in the background, but on good days it is not the defining factor in your day. It is possible to laugh and smile and do "normal" things. It is possible to make decisions and feel motivated. In fact, it is really quite important that on the good days, you really make the most of them. Sitting inside and feeling guilty is only going to enforce a negative cycle of behaviour. It can be a self fulfilling prophecy-I am depressed therefore I must act depressed therefore I will feel more depressed... in a nutshell, not helpful to you, people around you or people helping to treat you.
I know that this time off is imperative that I will be able to get on with life in all spheres soon. But I desperately needed this little break to slot my mind back into thinking mode and start feeling like I am "living" again and not just "existing". This time off is helping my focus, concentration, ability to make decisions, ability to prioritise and face up to things and think rationally. It is letting me manage things not let them manage me. It is reducing my anxiety and rekindling interest in anything other than hiding under the duvet. I have never questioned my feelings for Wriggles in the dark moments, if anything my love for her burns bright with a fierce intensity, but I could see my capabilities and my day-to-day devotion through simple tasks and attention slipping away as I would struggle with daily tasks, routine and getting things done that needed doing. I am clawing those things back now, and breathing in each moment as it happens. I am trying hard to be here in the present, not floating in the ether looking down.

But can you show people that in a brief meeting? How can you say that when people say "How are you?" and you reply on autopilot "OK, good thanks." Because anything more is a long and/or delicate conversation that is not really for fleeting moments.


I am revelling in feeling cheerful again. I am getting better, just not "cured" yet. I know my close friends and family understand.

I just hope other people do too.