Motor Neurone Disease

It's been roughly two years since I last wrote this blog, but last night I happened upon the blog of a very brave woman who is living with MND/ALS, and who is the same age as me, and I was inspired to write again.

The reason I found Carol's blog is because I have acquired my recently deceased mother's iPad, and she had a shortcut to Carol's blog on it.  My mum also had MND although hers was a short-lived journey.  She was diagnosed in November 2015 following two or three months of ongoing difficulties with her hands and arms, specifically being unable to move her arms behind her head to wash her hair in a shower.  We all thought it might be arthritis, and then following a few tests that ruled that out, we thought it might be MS, but we still had absolute faith that it was 'nothing too serious'.  And then, after a series of nasty nerve conductivity tests, the heart-breaking diagnosis was made.  MND which started with her hands and arm muscles. 

Before her diagnosis I had not really thought about MND other than admiring people like Stephen Hawkins for his resistance to the disease.  But it is a vile aggressive disease which progressively robs people of movement and speech until they are paralysed or locked in.  There are 4 types of MND and some go faster than others, but that also depends I think, on who is suffering it.  Mum's type (ALS) should have a life expectancy of 3-5 years, but I think I read somewhere that 50% don't make it past 6 months and mum fell into this category.  The hardest thing for me, living 600 miles away from her, was that each time I managed to see her (every 2-4 weeks), the loss of function she'd suffered in that time was staggering. 

By January she had her first push along wheelchair with the electric one ordered, a stair lift fitted into the house and a new wheelchair accessible wetroom upstairs.  She could just about feed herself with a spoon but it was easier to be fed by someone else (which she hated).  Her humour was always there though, and she thought it hilarious to demonstrate to me and my 7 year old son a piece of equipment on which you placed some food which was then flicked up into the air and into your mouth.  Watching her trying to be light hearted about her condition was unbelievably difficult - I had to smile and laugh along with her when all I wanted to do was howl and cry at the injustice of it all.

By March she needed a wheelchair 100% of the time although with help she could move herself into it from a riser-recliner chair.  This was hard work for her though, and very soon her legs became too weak to even stand.

By May she couldn't control the chair with her hands at all, so had knee controls fitted (where you press your leg out onto a pad which controls direction).  She could no longer swipe her ipad screen, or hold anything at all.  She had eye tracking technology fitted to her glasses so she could change TV channels and use her computer purely using eye movements.  By June she looked suddenly very old and thin and her only movement was in her neck (up, down, left and right) and hip flex.  She died on the 4th July from pneumonia.  Having been with her a week before celebrating her 68th birthday where she was laughing and smiling, it seemed completely impossible that she then died so quickly.  But I believe she put all her energy into her birthday weekend, seeing friends and family, and knew it was the right time to leave us after that.

So, amongst all her old jumpers and coats, boots, shoes and dresses, I also have mum's iPad and on it is Carol's amazing blog where she documents her positive but honest journey living with ALS in Canada.  It's hard to blog about someone else's illness and how it affects you, because it feels like a complete invasion of their privacy.  Many times I've wished I could let it all out into the ether,  but at the time, it felt too personal, too painful, too close.  Now that nearly 6 months has passed from her death, and inspired by Carol's blog, I think I might start writing again.

Reality Bites

Just a quick update to state that despite the lamentations in my last post, no longer do I feel any sadness at having to give up breastfeeding before my baby reaches the recommended age of 6 months old.  Having recovered from the double whammy of mastitis from easter, it came back with a vengeance this weekend (2 days after finishing the antibiotics) and so the cycle started again - ring NHS Direct, get to see a GP out of hours, be prescribed Flucloxacillin and then go to bed for the next 24 hours with the shivers and searing pain in my boob.  So, no, enough is enough, reality has bitten and I am now weaning the baby off me. 

So far I've managed to drop the 2pm feed without too much pain, and today I am going to drop the 11am feed for the first time and hope that by the end of this new course of antibiotics, that I've managed to drop down to just one feed a day and then it should be relatively easy to drop that one and be milk free!  For something that is so miraculous and natural, when it doesn't work or when it goes wrong it really is a disaster.  I am just really looking forward to waking up pain free, in a milk-free bed, wearing a dry t-shirt and being able to sleep on my tummy once again.  Formula, I salute you.  Antibiotics, I salute you too. 

An Ode to Breastfeeding

Over the Easter weekend, when we had driven nine hours south to sunny Gloucestershire, I had the serious misfortune of getting a double whammy of Mastitis (my third episode in the short 13 weeks of Lucy's life).  Getting it in both sides truly made me feel like a double masectomy would be preferable to the pain I was in.  The pain is so severe even bending over or leaning to one side would cause tears, breast feeding was conducted with me kneeling on all fours over my baby, begging her to empty to boob and hoping that gravity would help drain the blocked ducts.  Most of Easter was spent in the shower feverishly combing the underside of both boobs with a hairbrush (a mumsnet tip) (didn't work) hugging heat packs and desperately trying to hand massage the blockage away, all the time muttering that if anyone so much as touched my boob I would kill them.  It is like having fire in your breasts.  It is like having fire in your breasts whilst someone is simultaneously slicing you up and down with a knife and when the 'let down' reflex happens, you may as well shoot yourself because we're adding about 60 seconds of even more intense pain than that to the mix.
So, given this uncomfortable situation, why am I sad about the reality that I should give up breastfeeding?  Clearly it's no good for the baby to be taking flucloxacilin every 4 weeks through my milk, and nor is it good for me to feel like I've been hit by a car and my boobs are on fire every four weeks.  It just feels too early at 13 weeks to wean Lucy onto a bottle, I am going to miss those early morning and late evening cuddles with her suckling away, her hands grasping my finger, sweet little sucky noises, pure contentment and satisfaction in the milk that I am providing her.  It will feel so detached giving her a bottle, so far away.  And so, with less than 2 weeks before I start work again, I am battling with the insane guilt that I've not managed the breastfeeding very well and it's all my fault, and that the poor baby is going to have to have repetitively tasteless formula for the next 9 months until she can move onto cows milk.  And as for my Health Visitor who has been insisting babies need to be breasfted until they are ONE, she will cross her head sadly and tick a box on some nameless piece of paper documenting my lack of ability of continue breastfeeding, and it will be nothing other than a boring statistic.  There will not be a box to say 'mother gave up due to repeated mastitis', so it will look like I just gave up for no good reason.

And all of this almost makes me want to write an ode to breastfeeding, to capture in some sense that gorgeous moment, just between mother and baby that no-one else is part of, that no-one else can do.  But seeing how completely shit I am at poetry, I think I will save myself the trouble, and I'll go and console myself with some easter eggs instead.

My home birth!

A whole month has passed since Lucy was born and each week I tell myself I'm going to find the time to write about having a home birth.  Easier said than done! Until now it has been impossible to find the time or energy to do this. I doff my hat to those who can have babies and busy themselves with admin soon afterwards.

I was as nervous as the next virgin-home birther in the run up to Lucy's birth, telling myself that the option of going to hospital (50 mins away) was a viable one, and that I really didn't mind the idea of travelling by ambulance on all fours, with a midwifes hand up my perineum pushing the baby back in, in the worst case event of a collapsed umbillical cord.   The fact is I worried sick about all that, but equally told myself that there was no reason to suspect that anything would go wrong when I had enjoyed a trouble free pregnancy.  I also had a dose of diamorphine (pure heroin) in a cupboard, courtesy of the pharmacy via the GP as recommended by the midwife "just in case you freak out".  So, in the event of a collapsed umbillical cord, at least I'd be off my head on heroin.

On the day, I woke to find my good friend Camilla Festing of Acuworks had mailed me 4 small acupuncture needles along with a photocopied page from her text book indicating where to stick them, intended to induce labour and help expel the placenta after the birth.  I persuaded Hugo over breakfast to stick them in my feet (cue lots of wailing "I can't go on like this") and I immediately felt calmer and like I was taking control of the situation.  (By now I was 3 days overdue, and having never been overdue in my life, I was not happy).  Just 2 hours later, I had my show and although I couldn't put this down solely to the needles, I felt like they had helped!

I spent the day trying to rest and later that evening, after putting the boys to bed I started to feel quite uncomfortable, to the point that I wasn't interested in eating supper.  Although, I was telling myself that I wasn't hungry because I was excited about things happening, not because things already were happening (which they were!).  By 8.30pm I realised I was contracting every 10-15 minutes and at 9.30pm we called the hospital who said to call back when they were every 5 minutes.  An hour later, with the help of a 'time your contraction app' and with the TENS machine strapped onto my back, zapping me with frequent electric shocks, we called back to say they were now every 3-5 minutes apart "but not lasting a full minute".  I hadn't realised they don't have to last a full minute for it to genuine labour!  This time the hospital replied that since it was my 'first baby', I should wait a little longer and call back when it was more uncomfortable.  "No" I gasped..."not my first baby - this is my third!".  There was a shocked pause at the other end of the phone and the midwife/receptionist leapt into action and said "well in that case we'll send the midwives out right away!" 

Thank god she did, as an hour further along I was now very much doubled over, hanging onto the back of the sofa/Hugo/birthing ball, wondering why all the music I'd downloaded from Spotify was not distracting me to the extent I had hoped (what an amazing app!  I only discovered it in the nick of time thanks to a homebirthing thread on Mumsnet).  The midwives arrived at 11.30pm to my wails of relief and an hour and a half later, to the quiet chatter of the midwives and Hugo in the background, my gorgeous baby girl was born in the sitting room by the light of the woodburning stove to the sound of the rain pattering down on the windows.  It was the calmest, most 'relaxed' birth experience I have experienced (if giving birth without much pain relief - the heroin remained in its packet and the gas and air made me feel really sick-  can be described at all as 'relaxed'!) and following the delivery of the placenta (which was admittedly cannot be described as either 'quick' or 'easy') we all relaxed and a mood of celebration descended.  Mugs of tea were passed around whilst I realised I was completely freezing and put on some lovely fresh clothes, and then after a hot shower in my own bathroom, I was put into bed with some honey on toast, camomile tea and a quite breastfeeding recap.  The midwives were amazing - calm throughout, keeping both me and Hugo relaxed, and efficient when it came to clearing up the mess (amazingly the taupaulin from B&Q did the trick and there was absolutely nothing to clean up once we had got it out of the room). 

Lucy who weighed 8lb5oz was completely quiet on delivery and for 24 hours after, to the point that we worried something was wrong with her, but actually I think she was just quiet because she had nothing to fuss about - she was happy and relaxed and had no trauma or stress with the birth.  Her AGPAR was 9 and 9 (amazing, especially compared with our firstborn who was wrenched out after 36 hour labour with rotational forceps, and whose score was 5, 7).

She has remained over the past 4 weeks, a very calm and relaxed baby - sleeping well (pretty much waking every four hours throughout the night - never waking just to fuss) and I for one am amazed at how easily she has fitted into our family, how well her brothers have accepted her and how I cannot remember life without her.

As for the introduction to her brothers - it was almost completely worth it just for that one moment - it was 7am the following morning when I heard her brothers go to the loo and play together in one of their bedrooms.  I went through and said "do you want to see something really cool?" They both looked up with large eyes and said "yeeees", so I said "come through to our bedroom then" and they were hopping from foot to foot asking "what IS it mum?"  We all went through and our eldest walked smack bang into the moses basket.  "Look in the basket" I said and he looked and then said "Mummy! It's a baby!"

And that was that, they went to bed and there was no baby.  The woke up as usual at half seven and there was a baby - and there was no worry, no stress with childcare, no concern from them that mummy was 'in hospital' (e.g. must be sick) and just like that, a baby appeared in our bedroom.  I cannot believe they didn't hear anything or wake up in the night, but there we go, they didn't and it was all perfect and now our lovely little family is complete.

The heroin went back to the pharmacy - I was delighted not to have to use it (I'm sure it's 100% safe but I had happened upon results from some clinical study to say children of mums who use diamorphine in labour have a higher incidence of drug abuse in their later life) and I was completely delighted at my ability to keep calm and deliver at home in the most natural possible environment.  I definitely believe that there shouldn't be more risk just because you deliver at home, and also that by avoiding the clinical managed setting of a hospital environment, you actually eliminate risk by reducing your own stress and feeling of disempowerment.  So, if you are pregnant and thinking about it, go for it!  Finally, a fab site for inspiring you is the home birth site - just read this and download Spotify and you are half way there!