Monday 31 March 2014

Some thoughts on Mother's Day

I intended to write this post yesterday, you know, it being actual Mother's Day and all.  I composed almost an entire blog post in my head driving along the A55, a lot of it very profound I thought.

If only I'd had a dictaphone handy. Alas, I had to rely on my memory, and ability to stay awake long enough after the kids had gone to bed in order to actually type it out. Fail and FAIL.

I was fast asleep not long after they were, in the literally-can't-keep-my-eyes-open kind of way that happens in the final week leading up to my next treatment.

I had all these deep things I was going to say, and 24 hours later, I can't remember any of it.

Therefore this post will not even remotely resemble that one.

Basically, in the words of Tenacious D "This is just a tribute".

I am sure a lot of people view Mother's Day, along with Father's Day and Grandparent's Day and Teacher's Week etc etc as commercialised and gimmicky. Surely, we shouldn't need reminding, one day out of 365, that we love the people in our lives and should take time to appreciate them.  Well no, you'd hope not.  But before I join in the hate-fest and start ranting about stereotypical marketing and overpriced flowers, I would like to share how I spent Mother's Day.

First up, I woke up at 8am instead of 7am. Undermined slightly by the fact that the only reason that happened was because the clocks had been moved forward for "British Summer Time" (Ha!) I was also brought a cup of tea in bed along with a couple of very cute cards. One from the boys (complete with pictures) and another from Chris. Which is what got me musing about the whole "Mother's Day" debate in the first place, the fact that the whole thing, at least in the first few years of a child's life, has to be orchestrated by the other adult in the house. If Chris wasn't around would my 4 year old and 2 year old be making me hot drinks unsupervised and carrying them up the stairs? Or buying, or indeed, making cards in secret, ready to present on the day? That would be a no then.

After gulping down my hot tea there was no time for dawdling, or breakfast in bed as we had places to be. Yesterday was the day we had chosen for scattering Joy's ashes.

90 minutes and 100 miles later, we were in Trefriw, a tiny village in North Wales where Chris lived as a boy, and where Joy had enough happy memories that she'd mentioned it, in her final days, as a suggestion of where to scatter her ashes.







I'd never been before, so in the typical city-girl way, I was immediately in awe of the silence, and the lush greenery. We headed up to the waterfall where Chris had played as a kid, known as "Fairy Falls". The little placard says the name comes from the Victorian era: 


"The Trefriw Fairy Falls were named by the Victorians who were fascinated with fairies and identified many enchanting locations as home to these diminutive, mythical creatures."









Scattering anyone's ashes is an emotional task, but especially your Mother's ashes. On Mother's Day. So it wasn't a "nice" day, because we'd all rather have not been there, but at the same time, it was a nice day. Because if your Mother's ashes need to be scattered, then when better to do it than Mother's Day, and where better than somewhere beautiful, where she was happy?

The kids (a description that now means not just our two boys, but our beautiful baby niece, who is now 3 weeks old) obviously had no idea of the significance of what was taking place. I'd explained it a little to Toby but he didn't get it and I didn't push the issue. Although his lack of understanding of the magnitude of the day did mean that his behaviour was slightly errr...sub-par, since he didn't understand why he wasn't getting anyone's full attention, and why his constant whining about wanting to "paddle" in the (extremely fast moving) water, wearing jeans and canvas pumps, was being met with even more disapproval then it might usually have been.

After we'd been for something to eat, and sat out in the rare Welsh sunshine, on the drive home I got to thinking about the whole Mother's Day thing all over again with a new perspective. I'd been thinking about writing this piece about how it was a bit of a sham, (or should that be shame?) that Mother's Day only really works if there is another adult to uphold it in those early years. Then I got to thinking about appreciation and gratitude, which seems to be largely what Mother's Day is all about.

"I know I take you for granted the rest of the year but I love you really, here are some chocolates and an easy listening CD" kind of thing.

But don't we all take our Mother's for granted? And isn't it sort of the point? As a child at least?

As infants, when we cry, we take for granted that our Mother will hear our cries and put us to her breast, and then as we take our first wobbling steps, we take for granted that if we fall, our Mothers will be there to pick us up and kiss away our hurts. As we grow up, what we need and expect from our Mother's changes, but no matter how big or old we get, we still have needs and expectations and we take it for granted that she will respond.

Some children learn, from a distressingly young age, that their needs and expectations are not going to be met by their Mother, and the effects of that can last a lifetime, but regardless of how shit a Mother is, a child cannot help but love her. They may not like her, they may not trust her, they may not be able to rely on her, but they have an intrinsic love for the woman who gave them life.

So perhaps the whole idea, of children showing their appreciation and gratitude towards their mother's is what is flawed about Mother's Day.





I don't want my children to appreciate all that I do for them. They are 4 and 2 years old and cannot even fathom the magnitude of shit I do on a day-to-day basis to keep them alive, and the ways in which I mentally torture myself over the decisions I make on their behalf. I don't want them to feel grateful for the hundreds of hours of sleep I have missed out on, or the scars my body bears from growing and birthing them. I don't need them to say "thank you for feeding me fish fingers and beans and making sure I don't get run over by cars on the way to nursery". I want them to know that I do all these things because I love them, not because I expect thanks, or to make myself a martyr, or because I want looking after in my old age (although I do, just so you know!) I want them to assume I always will cuddle them after a nightmare or push them on a swing, or spend my last £20 on a pair of new shoes for their growing feet rather than a pair of shoes for my own. If I'm doing my job right, there will come a day when they will look back (probably when they become parents themselves), and appreciate the childhood they had, and the part I played in that, but until then I'd like them to be blissfully unaware.






I'm not saying I don't want cute cards with pictures of ninjas, or a cup of tea in bed. I loved how excited their little faces were sneaking in with the card and Rudy saying "You. Open. It. NOW" (He speaks as though English is his second language, it's hilarious). I loved enjoying a hot drink under the duvet before starting a chaotic day.  I'm not saying we should do away with Mother's Day at all.

But if anyone should be showing more appreciation and love towards Mother's, it is not little children but society as a whole. We are so crap, in Western Society, at appreciating each other, and motherhood in particular is undervalued and overlooked in so many ways. I don't want a red carpet rolling out for me just because I pushed a baby out of my vagina, and neither does any other Mother I know, but I think we could all use a little more love and support, from every corner of society, in order to better do our job of raising the next generation. Motherhood is not a hobby and children are not pets. One day these little cherubs of mine will be men of the world. Making decisions, and taking action and I only hope I can do a good enough job that the majority of those decisions and actions bring about happiness, for them and for others.

In the meantime, let's celebrate mothers, new and old. Single mothers, women trying desperately to be mothers, foster mothers, mothers who have lost children, mothers of mothers. We expect children to appreciate their mothers but we don't show them that motherhood is something to be appreciated.

Every mother probably has her own idea of how best she'd like to be celebrated and appreciated and what gift or action would mean something to her. I saw a lot of "Long hot bath ALONE" requests in the lead up to the day itself.

I didn't make any requests, knowing what our plans were for the day but in hindsight feel that scattering Joy's ashes in Trefriw was the perfect way to spend Mother's Day.  Celebrating the life, and mourning the loss of a wonderful Mother, who with or without support, did a fantastic job of raising her contribution to the next generation, and if I'm biased when I say that, well sue me.









And my own Mother? I am old enough now that I can do more than just carry her a hot drink up the stairs, so I have a special day out planned for her this Sunday instead.





Mothers. Let's start celebrating them, every day, and not just our own.


The Infusion Bay

It seems to be a universal law that as soon as you find yourself 'comfortable' with a situation, that situation will change.

When it comes to regular IVIG therapy, perhaps 'comfortable' is not the right choice of word but it's fair to say that 4 months after being diagnosed with CIDP and 3 treatments in to my regular IVIG routine I felt like I had the situation all figured out in my head...

Chris requests the Monday and Tuesday off work.

I pack a little bag of stuffs to keep myself entertained.

I endure the horrors of rush hour traffic to arrive at Salford Royal for 9.30am.

I'm shown to a bed (which I never actually lie on).

I'm cannulated and I spend the day hooked up to an IV.

I have my arm bandaged up to protect my cannula.

I battle my way through rush hour again to get home in time for tea and to put the boys to bed.

And then it's just a case of rinse and repeat the following day (but without needing to be cannulated obviously).

So of course when I turned up this morning, bright and breezy despite the pins and needles and tremors, with my bottle of water and library book...instead of being shown to "my bed" I was instead told to "take a seat in the waiting area".

Well now, this is different, I thought, still smiling.

I was then told that there were no beds and I was one of several people waiting for one.

At this point, I must confess my smile was faltering as I tried to quell the rising panic. You see, something you may not know about me, is that I am a drug addict.

Yes indeedy. I'm all sweetness and light until I can't get my 'fix' and then I'm all tears and tantrums (internal- I have yet to smash up an NHS waiting room. Frankly, by the time my IVIG is due, I don't have the energy!)

Clearly I am physically dependent on the immunoglobulins. Not chemically, and I certainly don't get withdrawal symptoms, but without it I'd be in a mess. In addition however, I have also become mentally dependent on it. The idea of life without it is so terrifying, that I can't help but be.  Knowing that my treatment is booked in and coming up is such a relief. It makes the final week of my month, when my symptoms increase and start interfering with my day-to-day life bearable, knowing that my boost, and 'normality' is just around the corner.

So there I was. Serene on the outside but on the verge of freaking out internally. I decided the best course of action was distraction, so I struck up a conversation with a fellow patient also waiting.

By coincidence, his story matched mine almost exactly...well...I say almost exactly. He had at least 25 years and about 100lbs on me, plus he'd had some heart surgery to boot. But his CIDP journey was very similar, initially having been diagnosed with GBS as I was.

We were still chatting when my name was called, only instead of being admitted to the ward I was shown to the Chair Bay.

You can probably guess what that is from it's title. Yes, it's a room full of chairs. I'd heard about this place but never seen it for myself.

Its actual title is "Infusion Bay" as it's strictly for patients who are in for infusions (whereas the ward is a mixture of people needing infusions, biopsies, and a variety of neurological investigations) and it operates to a pretty tight schedule so in theory you sit down, get your IV infusion and then get out of there.

I am still a relative newbie to this whole business (not that I feel it, but today I sat next to a guy who has been coming here for treatment for over 3 years, so that gave me some perspective) and therefore my infusion rate has been pretty slow up to now, meaning I am not an ideal candidate for The Bay.

But since there was no bed for me I was MORE than happy to be a Chair Hog for a couple of days.

I was then visited by one of the neuro specialist nurses who was reviewing my treatment regime, and wanted to know why the hell (my words, not hers) my rate hadn't increased beyond 150mls/hr when my maximum safe infusion rate is over twice that. The answer is partly due to individual nurses being over-cautious and partly due to staffing, as often a nurse will say "I'll be back in half an hour to increase the rate" and I don't see her until 2 hours later. It's no biggie as far as I'm concerned. Regardless of how slow or fast it drips through I get the same amount and it has the same effect, so if I'm stuck in hospital all day for 2 days out of the month then so be it.

I must admit it would be nice to spend less time hooked up though and it was always my consultant's plan that I eventually have the full 80g in one day. So when she suggested we give it a whirl today, since I'm in The Bay anyway, I thought "Why not?!"

So here I am. My second bottle of Privigen is currently being pumped into a vein in my right wrist at a rate of 200 mls/hr and I have 2 more lined up ready and waiting.

The side effects of an increased infusion rate can be high blood pressure, headaches and flu like symptoms, some of which can be combated by keeping well hydrated (hence me currently drinking water like it's going out of fashion.)

It would be great if I could have the full 80g in one day but if I can't, well then just knowing I will get it at all, is enough for the addict in me.

Friday 28 March 2014

Cyber Spring Clean

I'm thinking a Spring clean may be in order...only instead of kidding myself I'll actually ever get round to sorting the box junk room, or being a weirdo and organising all the tins in the cupboard so the labels face the same way, instead I thought I"d focus my energies on all things cyber.

It's a fact of life, or my life anyway, that a significant portion of it is lived out online.

E-mails, banking, social networking, shopping, blogging...not to mention all my documents, photos and music, which admittedly are offline but still "virtual".

I recently made a horrifying discovery when upon attaching my external hard drive in order to put some "fresh" (aka not listened to it in absolutely aaaaages) music on my ipod, I found that there was nothing there.  Or rather, there was, but it was all stuff that I had already, and all the music I had thought would be there, that I was so sure I'd backed up before my old laptop died, was in fact gone...forever.

It's that kind of thing that makes me think I need to get my shit in order.

Plus I still have no clue what I am doing with this blog, I keep blathering on about all kinds of random stuff without any clear ideas. Is it a parenting blog? Well, I am a parent of two small children, so sort of.

I got a bit freaked out last year though, when I read an article about a mother who had been victim to some weird cyber-imposter who stole photos of her children and made up a fake Facebook account with them...hence I am suddenly sharing a lot less photos of the kids on the blog. I know I share all kinds of private stuff on here, but then I figure most of it is my information to share. But if I share every minute detail of the boys' lives and they end up hating me for it...what then?

And if it's not a parenting blog, then why is my background full of Duplo blocks?! We don't even play with Duplo in this house anymore, since both boys are in love with actual Lego now (although I do occasionally catch Rudy with tiny pieces in his mouth, but then I catch him with all kinds of shit in his mouth).

And that's another thing- the title. I loved it at first as it summed up life perfectly, since there was rarely a night went by that we didn't at some point, have all four of us in the one double bed. But these days that only happens at story time, or very rarely if the boys sneak in with us at dawn. Plus I'm not sure if it's to blame but the blog seems to be attracting a lot of err...inappropriate traffic and I'm wondering if people are perhaps taking the "four in a bed" part the wrong way?! This is not a blog about foursomes. Sorry to disappoint but I think it's best to be clear!

Obviously I need to figure out what I'm doing here, and dedicate some time to organising my shit, but when it comes to it I always feel I'd rather do something (anything!) else, hence why I spent last night watching Forrest Gump and eating Bourbon biscuits instead.

If any of you reading this (yes- all four of you!) have any ideas or suggestions then let me know!

Monday 24 March 2014

Filing Feelings

We finally got round to doing some 'filing' in our house recently.  That makes it sound very glam and like I was wearing a pencil skirt and following an index system at the time, when in fact I was wearing my pyjamas, and tossing old bills at the dog who would then rip them into tiny pieces (who needs a fancy shredder?!)

Yes in reality, filing is just when the desk starts to bow under the weight of unopened bank statements (I know, I know, won't someone think of the trees?! Blame Chris, not me, I bank online!) and appointment cards and nursery newsletters and the such, so that we finally have to do something about it.

Most of the stuff goes in the bin, and then anything worth keeping gets put in one of four box files. It's all very dull and necessary.  I actually found an unopened letter from our pet insurer which was dated the end of November, telling me that the price of Fudge's insurance was about to double.  That would probably have been good to know 4 months ago...*sigh* In my defence, a lot of shit was going down in November, and I spent a week of it in hospital, and even managed to get myself diagnosed with two rare conditions.  So perusing our renewal quote on the dog insurance wasn't really high on my agenda.

There's always shit left over, at the end of the 'filing', that has nowhere to go. Often times it ends up in the bin also but there's some stuff it's hard to be ruthless over...




Scan photos, from a pregnancy that didn't work out...

Pathway Plans, and minutes of meetings from when I was in care as a teenager...

An instruction booklet for a calculator my Dad gave me, that still has workings out scribbled on it in both his and my Mum's handwriting...

A Bliss DVD about resuscitation that I am supposed to have watched as part of my job- you know, the job I haven't been to in over 7 months...

What am I supposed to do with this shit?  There is no box file for "Things that make me feel weird" (an oversight on our part, it seems). In the end they sat in a pile on the table for a couple of days until I couldn't bear looking at them anymore and they got shoved back where they came from- the deepest darkest recesses of the desk (and my mind).

And then just a few days after our filing extravaganza this arrived in the post:



A letter, about the whooping cough vaccine, being offered to women who are more than 28 weeks pregnant. Yes, it would appear my GP surgery still think I am pregnant. 33 weeks pregnant to be precise. This is despite the fact that they have received my discharge summary from St Mary's Hospital, where I had my miscarriage medically managed last October, and correspondence from Sheffield Centre for Trophoblastic Disease who are still testing my urine every fortnight following my Molar diagnosis.

There was no doubt where this letter was going- straight in the bin.

If only filing my feelings were as easy.


Monday 17 March 2014

The Book Jar

Further to my last post, all about my love affair with books, I feel it's time for a confession.

Here goes...sometimes I have a really hard time deciding what book to read next. This is particularly true when I have just finished a really fucking amazing book and still have a bit of a hangover from it. There's no point in me attempting to read anything that is even vaguely similar as I'll constantly be comparing and thinking about the old characters and the old universe instead.

This can make it tricky to move on. Especially when I am not exactly err...short of choices, might be one way of putting it. (I am drowning in unread books may be another way of putting it).

So I stole borrowed an idea from Beth over at Plastic Rosaries and made myself a book jar. Well, the jar itself already existed, but it had only recently moved in with us, as it was one of the many things of Joy's that we inherited, and until just now it didn't have a purpose other than sitting in the fireplace.



First of all I tore up little pieces of paper and wrote down the names of every unread book in the house/on my kindle (yes, kindle books are being included too!) Just to give you an idea of the magnitude of this task, that part alone took me an entire evening. I have this belief that if something is worth doing, it's worth doing right. Which is all well and good but means that when listing books I haven't read before I wanted to be thorough and therefore had to go through three book cases, a fireplace and a kindle meticulously in order to make sure I had them all.

And here they all are



70 folded up pieces of paper ready to go in the jar. The breakdown in the end was 22 kindle books and 48 paperbacks. Non-fiction/textbooks have not been included because I tend to always have one of those on the go anyway alongside a novel. Although the fiction/non fiction divide would have caused difficulties when it came to autobiographies/memoirs, so since they are read for enjoyment, and not for information gathering, I decided to included them in the jar.

In addition there are also 23 other pieces of paper, identical but not photographed, as they are sequels, and as such are being kept separate!  I couldn't think of how else to work the whole trilogy/series aspect, without risking picking out book 3 before book 1 etc, so decided that once a book that is part of a series has been chosen and read, the next one in the series can be added to the jar. Although I have decided to allow myself the option to forego the jar and just immediately read the next book if I want to. Yes that might be cheating slightly but I know what I'm like with trilogies and I know that if the first book is any good I'll want to move straight on to the second and then the third and so on.

Otherwise the rule is going to be simply that each time I am looking for a new book to read, I reach in the jar (possibly give it a shake first) and read whatever title I pick out.




Honestly, the idea is actually making me a bit nervous but I'm hopeful it will prevent the fortnight of dithering I am currently experiencing when I want to start reading something new but can't quite work out what I fancy/what mood I'm in.

If anyone is interested in how I get on with this little reading project you can follow my progress here on the blog and I'll let you know how it's working out. Although in the interests of honesty I should warn you that I am currently a quarter of the way through Cassandra Clare's City of Fallen Angels, so am unlikely to be lucky dipping just yet!

Read what you Love

So as everyone who has ever interacted with me for longer than 10 minutes can probably gather- I read. A lot.

I have always been a complete bookworm, and in fact seem to recall winning an award with that exact title at the age of 8, around about the same time I ran out of books to read at school, literally.

My relationship with reading has gone through peaks- clearly my time at primary school being an example, and troughs- like following the birth of my first child, when to be honest I'd probably be exaggerating if I said I could count on one hand the number of books I finished in his first year.

Finished being the operative word there. I probably actually started, at least twice as many, but for the first time in years, hell, the first time in a lifetime, I found that I could not read. Sure I could recognise the patterns of letters that made up words and still understood the basic concept of grammar, but when you stuck it all together on a page, I found it just didn't add up. I would start reading a book and get stuck, sometimes on the first page. I'd end up reading the same sentence over and over, still no clearer as to what message it was trying to convey to me seventh time round as I had been the first.

It was a very strange phenomenon and a very frustrating time.

Attempting to read The Historian by Elizabeth Kostova, a book I'd started in my 35th week of pregnancy and then gone back to when my son was about three months old, was, as it turns out, a really bad idea. I'm always hesitant to criticise when it comes to books. I would never say a book is shit, unless, you know, it's really shit, but even then- who am I to say? It may not be my cup of tea, but far be it from me to deny it has technical merit or satisfies a void in literature previously unfulfilled.

So, The Historian, for those who haven't read it, is fairly lengthly (for someone who hasn't picked up a book in months and is struggling to concentrate anyway) and dry and full of historical references to Eastern Europe. It wasn't my cup of tea, but I was so thirsty after a four month book drought that I drank (read) it anyway, persevering word by word long after my enthusiasm  had diminished. I thought the problem was with me, and that it could be fixed by just finishing one book, and that it should be this book, the book I'd committed to prior to giving birth.

I did eventually finish (although I was pregnant with my second child by that point- no joke!).  No sooner had I finished however, than I wished I hadn't bothered. The problem may have been me, but forcing myself to read books that didn't spark my interest was not going to be the solution.  In fact I'd go so far as to say that is one surefire way to bury your love of reading in the ground.

What I really needed to do, to reignite my passion for books was to go back to basics.  Like with any skill left to languish I'd become rusty.

At that time, four months in to my parenting journey, I had only just begun to regain any semblance of "free time". This usually consisted of the hours between 7pm and 10.30pm, when I could almost guarantee that Toby would sleep soundly in his co-sleeper crib upstairs, leaving me free to do whatever I liked. You know, just so long as it didn't involve leaving the house, or making any noise, imbibing more than a couple of units of alcohol or entering the bedroom where he slept.  So, like I was saying- I was freeeeee! Sort of.

If you'd asked me what I intended to do with that time when he was a few days old and attached to one of my nipples for twenty hours a day I would have said SLEEP! And, to be perfectly frank, that still should have been my number one choice. But far more than sleep, what I had come to miss was just time. Time to myself. Time with Chris. Time to cherish, time to fritter, having conversations not punctuated by wails or a need to expose my breasts, watching films with gun fire and swear words and nudity without fearing a visit from the nspcc. Eating hot food, using both my hands, and... of course, reading.  I felt not quite whole without a book on the go, but then having The Historian on the go for several months didn't actually help either. My time felt so precious, I was loathe to spend it on anything that didn't seem 100% fulfilling. That didn't necessarily mean it had to meet other people's criteria for "Meaningful Ways to Spend your Time" but it had to feel good and struggling through yet another chapter of a book I wasn't in love with, didn't.

When I finally finished that book I made my first new reading rule: To give up. I'd never ever given up on a book before, so it took some getting used to, but when I tried it, boy was it liberating! To begin reading something and then two or three chapters in decide it wasn't for me, and move on to something else was a revelation. You might think this new found ruthlessness would have gone to my head and I'd be abandoning books left right and centre but truthfully, I used it quite rarely. Like a "Get out of Jail Free" card, I just cashed it in when I really needed to and it worked.

Another thing that really worked was picking up books that I perhaps wouldn't have usually. Trying something new. A lot of the time it made me realise why I wouldn't usually go for that genre, or that author, but other times I was pleasantly surprised and my literary universe widened as a result.

If there's one thing I hate (there isn't- there are loads of things I hate), then it's snobbishness. About anything actually, but especially when it comes to books.

I hate it when people insist they'd never read this or that, or that they simply can't believe that someone has not read y or z.

I read anything and everything. I read newspapers, magazines, takeaway menus, the back of cereal boxes, children's picture books, blogs, poetry, erotica, crime fiction, memoirs, books that everyone is talking about, books that no one else seems to have heard of, library books, bargain basket books, prize-winning books, kindle books and yes, books made of actual real paper too, if you can believe it. I am the opposite of a literary snob, I am in fact, a literary slut. I am wide open to suggestions and will try anything once.

Imposing any kind of restriction on myself as I was re-learning how to love reading, would have been a catastrophe. My time for reading was scant and my attention span even more so. My moods fluctuated wildly day to day, so I might have been "in the mood" to read something one day and be more inclined to have my toenails pulled off with pliers the next. Deciding to only read books on certain lists or by a certain calibre of writer would have simply meant I didn't read at all. And without meaning to sound melodramatic, I think starting to read for pleasure again was pivotal in me moving forward and finding my place in the world as a new mother.

Particularly after the birth of our second child Rudy, when I really struggled to adapt to life as a Mum of two boys under two, and in fact, undoubtedly had PND although I was never officially diagnosed. Two and a half months after his birth, when I was at what was probably one of my lowest points, Chris bought me a Kindle. And although the effects were not instantaneous by any means, it did make reading suddenly a possibility whilst breast feeding (of which I was doing plenty). Previously, needing two free hands to hold a book/turn pages had meant it was impossible, not to mention the rustling of pages distracting/waking the baby (the last thing you want in the middle of a juicy chapter) and of course the perpetual risk of paper cuts to both your hands and the baby's scalp.

No, now I was free to read whatever I liked whenever I liked and although there were some teething issues, within a week I had gone from skeptical to complete convert.  It's no exaggeration to say that having a Kindle (although any e-reader would have done the job I'm sure) transformed my reading habits at that time. Or rather, allowed me to return to my old reading habits- of always having a book on the go, of finishing one book and being hungry for the next, of thinking about books, and talking about books with other people.



There has been a lot of sharing of this quote as of late, along with some debate about the message behind it. I propose the word "DO" ought to be replaced by "READ" and then it would be perfect.

When I hear people say they "don't read" I find it bizarre, and wonder what other life skills they have that are also going to waste. When I hear people say they "don't enjoy reading" I feel sad for them, because I've been there, but I know it can be remedied, if only people would just Read what they love and love what they read then that would be half the battle.


Saturday 15 March 2014

Rabbits

For reasons I cannot quite explain, I am a little obsessed with rabbits. I don't know if it's because we always had pet rabbits when I was growing up, or because Rabbit is one of Chris's nicknames for me, or just because they have those cute lil' ears, or a combination of all of the above but for a while now I've had a hankering for a rabbit (or two) of my very own.

I did ask Santa to bring me one:



but alas, there was apparently some confusion, for Christmas morning I received a vast array of delightful goodies, none of which had fluffy tails or twitchy noses.

Then, a little over a month ago a friend of mine posted some photographs of some sweet little bunnies on Facebook, she was fostering them for the RSPCA, and as soon as I saw them (about 30 seconds after she'd uploaded them, thanks to the joys of modern technology) I thrust my phone in Chris's face and began making cooing noises.

Granted, his response to the pictures was more eye rolling than googly-eyed, but nonetheless, with my blatant disregard for his opinion gentle powers of persuasion, a little less than two weeks later and we were visited by the lovely Jo, who does home visits for the RSPCA.  After ascertaining what we already knew about bunnies' needs, checking out the housing we'd bought, and giving us lots of useful info, she approved us to adopt the pair in question, and we brought them home the very next day.



They already had perfectly good names but one was very similar to the name we would have called Baby Number 3, which I thought might be a bit...well...odd.  Besides which, I thought it would be fun for us to name them ourselves. True to geeky form, we drew inspiration from Marvel, and both names usually provoke a reaction of "huh?" along with a complete look of bafflement.

The larger, fluffier, all-black male is Loki.



The smaller Dutch female is Amora.



For the record, I wanted her to be called Lorelei, (I'm a fan of alliteration) but I was overruled 3 to 1. Well, Rudy didn't vote against me but as he's 2 years old and can't pronounce Lorelei (or much else for that matter) apparently he didn't need to.

Amora fits better thematically anyway, particularly since Loki does occasionally try to hump her. I know, how rude, right? I'm so glad that they've both been neutered, as much as Chris is warming to sharing his home with yet more furry critters, a litter of baby bunnies might push him beyond his tolerance level.

Both bunnies have settled really well. I'm sure it must have been a massive change for them, going from being outdoors to becoming house bunnies, but hopefully in a good way? I keep wondering if they miss the grass and the fresh air but Chris tells me rabbit's brains' don't work that way, and in any case they do still get to eat grass, just not directly from the ground. And they're almost 100% less likely to be eaten by a fox, which has got to be a bonus.

Seriously though, they have adapted really well and seem to enjoy hopping around the living room, attempting to steal food out of the children's hands and mouths (literally- Rudy almost inadvertently shared a strawberry cone with Amora a couple of days ago), and stretching out on the foot stool.





I (I was going to type "We" but lets be honest) have got in to a little routine with them too, so slicing up veggies for them at the same time as preparing the boys' breakfast, and mucking their cage out every other day, is becoming second nature.

I think a few people probably think I'm a bit nuts deciding to take on two bunnies when life is arguably hectic enough at the minute, and certainly some people expressed reservations about certain aspects of bunny behaviour (chewing mostly). Yes, three days after moving in Loki gnawed through my laptop charger and I almost had a cardiac arrest thinking that he'd given himself a cardiac arrest from the electric shock, and yes they do need plenty of exercise and stimulation and more hay than you can possibly imagine for such small creatures, but it's SO worth it.

Watching them hop about in the evenings after the boys are in bed, when you can tell they really feel free to get their leap on, is awesome. They're pretty hilarious actually, and incredibly cute. They've got bags of personality and, most importantly of all, they're just so goddam cute and fluffy!  The cuteness and fluffiness is overwhelming actually.

So is it extra work at a time when I could be doing with making life easier? Yes. Is it extra fun at a time when we could all use some? Definitely!





Thursday 13 March 2014

Molar Pregnancy and Me

Welcome to the second instalment in the "and me" series!  Featuring myself and my range of rare medical conditions.  Ok, I actually have just the two CIDP and Molar Pregnancy.

Well, I don't have Molar Pregnancy, there is no having of Molar Pregnancy. But I am undergoing follow up for a Molar Pregnancy, and I know a lot of people don't really understand what that actually means so here I am, blogging about it.

Chris and I decided to add to our family last summer, sure I'd been having a few strange little twitches in my leg but we obviously had no idea of what was about to happen, otherwise we wouldn't have been contemplating trying for another baby.

When I say try, that's not really the correct wording. We're fortunate to be extremely fertile. The question is always whether the pregnancy will actually stick.

I discovered I was pregnant on August 29th, the same day I was diagnosed with having Guillain Barre Syndrome, and had all the usual doubts and fears, but an early private scan showed the teeny tiny beginnings of a baby, i.e. a blob measuring a week behind but with a clear strong heartbeat.

I've never had a miscarriage that followed a positive scan so I figured we were free and clear and concentrated on getting better i.e. re-learning to walk etc.

Unfortunately in this case I had definitely counted my chickens before they'd hatched. Literally. A scan at what would have been 10 weeks showed an embryo sans heartbeat. There was to be no third chicken.

Since my body is not always eager to admit it's failings and reluctant to let go of doomed pregnancies I had to have my miscarriage medically induced.

You'd think that would be the worst of it, right? So did I. Until 3 weeks later after celebrating Toby's birthday at Legoland, we came home to a huge thick envelope in the mail.

The histology results from the miscarriage were back and the findings were consistent with what is known as a Partial Hydatidiform Mole.

Fortunately I'd heard of the condition before, through work, otherwise I'd have been even more shocked and bewildered than I actually was.

In simple terms it means that at conception, two sperm fertilised the same egg. This should never happen, as eggs are supposed to form a protective barrier preventing a second sperm from gaining entry. So there was a glitch with my egg, and two lucky sperm got in. Unfortunately this meant that right from the beginning the pregnancy was not viable, and by viable I mean, could never have resulted in a live healthy baby at the end of it.



From the start there was an extra set of chromosomes- 69 instead of 46 (known as a triploidy). That extra genetic material causes the pregnancy to progress abnormally with the placenta outgrowing the baby. Partial molar pregnancy is a type of Gestational Trophoblastic Tumour.  Usually the condition is diagnosed at scan and the recommended treatment is an ERPC, which is surgical removal of all the pregnancy tissue. There is a risk that if any material is left behind it can embed in the uterus and develop into what is known as an invasive mole. Untreated this can lead to Choriocarcinoma.

Obviously I wasn't diagnosed as having had a Partial Molar until weeks after my medically managed miscarriage, and not having had an ERPC at the time, meant I was at slightly increased risk of there having been some pregnancy tissue left behind.  The idea of there being this random genetic material burrowing into my uterus and possibly becoming cancerous was pretty terrifying and I definitely struggled with the diagnosis more than I did with being told I had Guillain Barre, or being told I had miscarried, or even a couple of weeks later having my GBS diagnosis changed to one of CIDP. The molar was the hardest to swallow because it seemed so fucking unfair.

All we'd wanted was another child, how had it gone so wrong that I was now being sent pamphlets about Chemotherapy?!

Fortunately, all my stress and worry and research into whether or not I would lose my hair on Methotrexate proved to be unfounded. I have been monitored via regular urine and blood samples (I send a test tube of pee to Sheffield through the post every fortnight!) in order to check that my HCG levels are reducing.  In simple terms HCG is the "Pregnancy Hormone", so were it increasing, or even just sticking fast, then it might indicate that there was some tumour remaining and I would need further treatment. My levels started low and have continued to fall. My most recent level was 0.02. There really isn't much more NOT PREGNANT IN ANY WAY SHAPE OR FORM! you can get!

So it's all been pretty straightforward and next month (as of the 12th of April) I will reach the 6 Month Post Miscarriage marker and no longer need follow-up. Although were I ever to get pregnant again (regardless of at what point in the future, or the outcome of the pregnancy) I would need follow up afterwards, as it is always possible that the pregnancy hormone can "reactivate" the mole. Which sounds so sci-fi, I know.

I will finally be able to get life insurance (something I have been turned down for, due to there having been an increased chance of a cancer diagnosis these past 5 months) which will be a relief.

It also means that as of next month we will be given the "all clear" to try again, should we want to.

1 in 600 pregnancies is a Molar Pregnancy. Having already had one the risk increases to 1 in 100. Which is still pretty good odds of everything being perfectly fine, and in fact most women do go on to have successful  pregnancies and healthy babies following a molar diagnosis.

Of course most women do not also have a diagnosis of another rare and under-researched condition, like CIDP.  And that, is a whole other post in itself.