I know tomorrow is going to be hard and horrible. And I know there’ll be no getting away from that fact, physically or emotionally. And that’s ok. I will go through it and come out the other side.
But for tonight I wanted to distract myself, just a little, by thinking of some things that have happened this week that have made me smile or given me a chuckle. And I don’t mean the moment I realised I could walk again. Moments like that deserve a post of their own I reckon.
I mean silly stuff that cheered me up even when things were looking pretty bleak.
1. people repeatedly asking me if I’d “mind” a male nurse or support worker helping me. What is with that question?! I don’t give a flying monkeys what gender the person is who helps me off the toilet. Send in Johnny Depp or fucking Santa Claus if you want! I’m not looking to date the guy, I just need them to help me up!
(On a serious note I understand its about privacy and dignity but it’s a slippery slope when a HCP’s gender is seen as an “issue”. What about male midwives? Or females working in urology? Who decides what’s appropriate? Where do you draw the line?)
2. As an inexperienced student nurse tried desperately to take my pulse manually, I tried to ease her nerves by joking “Don’t worry, I’ve definitely got one” Unfortunately it passed her by as sweating and deadly serious she simply said: “Oh, I know”.
3. This scenario, every single night in the middle of the night:
Me: Totally horizontal and sound asleep.
Support worker/Student nurse in an exagerated whisper: “DO YOU MIND IF I TAKE YOUR BLOOD PRESSURE?!”
Me: “Urngh” (Stick arm out of covers)
Support worker: “Your blood pressure is a bit low, you need to drink more…” Pushing a jug of water towards me (Bearing in mind that this is usually at 2am or 6am!)
Or, in the case of the aforementioned student nurse: “Erm…erm…” (Runs away)
I swear this happens every night! But I’m 28 FFS! And until summer I was running regularly. Why on earth would I need a systolic BP over 100 when I am completely asleep?!
After my 1st dose of IVIG my BP was 140/75 and I thought my head was going to blow off!
4. Whilst showering me in the hospital bathroom Chris said in a sad voice “It’s not even sexy. You’re just too ill”. Haha. I think he can rest assured that you’ve got to be a pretty sick puppy to find shaving your newly paralysed girlfriend’s legs sexy in any way. Sweet? Yes. Loving? Definitely. Sexy? Absolutely not.
5. Ordering a tuna salad for lunch 3 days in a row and never getting it. Tuna is like gold dust in this place. On one of the occasions I was asked if there was anything else I fancied. I asked if they had anything similar like maybe a cheese salad or a tuna sandwich? “No, but we’ve got a jacket potato with cheesy beans” ?!?!
6. A young pharmacy technician insisting he had to lock my Tesco Folic Acid 400mcg away in my drugs locker
7. The moment one of the sisters on AMU popped her head around the curtains and found Emma kneeling above me on the bed waxing my eyebrows and thought she was a doctor. This makes me laugh just thinking about it.
8. Chris’ confession that at home the boys had been wearing mis-matched pyjamas “but they’ve had a bath every night!” God I love him so much. Both that he knew it would drive me crazy, and the fact that imagining Rudy running around in his Batman pyjama top and Green Eggs and Ham pyjama bottoms does in fact drive me crazy, even with everything that is going on is hilarious.
Written on Wednesday 9th October
“I’m sorry”. Two words you never want to hear coming out of your sonographer’s mouth.
Our baby, who we saw less than 3 weeks ago, measuring 5mm with a nice strong heartbeat today measures 7.5mm but has no heartbeat.
My 5th pregnancy: my 3rd miscarriage. I can’t believe this is happening again. And on top of everything else that is going on right now it seems especially cruel. Can my body actually do anything right?!
Written on Friday 11th October
Those of you reading this may be wondering what you missed. You may be tempted to scroll back through my old blog posts or facebook timeline looking for the “I’m pregnant!” announcement. Don’t bother. There wasn’t one. You see, the day I discovered I was pregnant was also the day I was diagnosed with Guillan-Barre. This baby was conceived when so far as I knew I had “sciatica” not a debilitating and potentially life-threatening neurological condition. So how do you make an announcement like that? “I can’t dress myself but hey guess what- we’re having another baby!” The answer is simple: you don’t. So, for the past 6 weeks only our closest family members and friends have known.
The baby was very much planned and wanted and loved and has given us all something positive to focus on and look forward to.
It was also one of the reasons I wasn’t treated with immunoglobulins during my 1st hospital admission. Not only were my symptoms quite mild at that point but the risks were too high.
Given my condition, and my history of miscarriage we decided to pay for an early private scan to ease our minds. In a tiny room in the centre of Stockport the wonders of ultrasound gave us a view into my retroverted uterus and sure enough there was a beautifully round pregnancy sac, containing the beginnings of our baby- a blob measuring 5mm with a flickering heart beating 122 beats per minute.
That something so tiny can have a heartbeat is mind blowing in itself. To see it nestled in there, oblivious to my struggles with Guillan-Barre and most importantly unharmed by them was amazing.
I have never had a miscarriage that started out with a positive scan so I felt pretty confident that all would be well. I decided that the most important thing I could do would be to concentrate on getting better. For myself, for my family and for the new little life inside of me.
After such a positive scan we decided it was probably safe to tell the boys. Afterall, we reasoned, Toby would soon guess anyway as we talked about it in front of him and in my last pregnancy I started to show at 11 weeks.
Toby was so excited. He’s been begging for “a new baby” for months. Each day he’d tell me my tummy was getting “bigger and BIGGER!” (At 7 weeks pregnant- thanks kiddo?) and he was firm in his belief that the baby would be a boy because he wanted “another brother” Secretly both Chris and I thought the likelihood was he was right but took care to remind him that we couldn’t actually choose and “a baby sister might be fun too…” He was unconvinced.
I now wonder how I found it in me to be so blissfully naeive as to think it would all be that straightforward and easy.
After my readmission to hospital and my treatment with immunoglobulins I was told that this pregnancy would be considered “HIGH RISK” I grumbled to Chris “No homebirth for me then” but we both knew I didn’t really give a shit. I loved my homebirth with Rudy but I love Rudy himself infinitely more. I was such a cliche: “All I want is for it to be a healthy” I’d say to the nurses who all assumed I was yearning for a girl after 2 boys. “Oh, and for me to be able to walk please!” I’d add.
I decided that if I could pull this off, recovering from Guillan-Barre and bringing another beautiful baby into this world then I’d have dodged a bullet and should never ask for or complain about anything ever again. Ever.
After consulting with obs&gynae the medical team decided I needed an ultrasound before home. Chris turned up to visit with the boys on Wednesday afternoon, just before the porter turned up to take me down there so I went on my own. I was feeling pretty confident right up until the sonographer said she’d need to do an internal scan. I’ve had a lot of scans in the past 5 years and if someone tells me at 9 weeks and 5 days pregnant that they can’t see anything abdominally then I know it’s not going to be good news. Retroverted uterus or not.
Sure enough, silence filled the room for the first few minutes of the internal scan and then came the “I’m sorry”. A second sonographer came to repeat the scan but came to the same conclusion: There was no heartbeat.
They sat me in The Room whilst I waited for the porter. You know The Room. I looked around it and thought about all the awful things people must have been told in there. A room who’s sole purpose is to contain all the sadness and tragedy and horror that an ultrasound can uncover. I cried and thought I was glad my situation wasn’t worse and I was glad that Chris and the boys hadn’t come with me.
Back on the ward I couldn’t find the words I needed so I just shook my head at Chris. Between that and my mascara-lined cheeks it wasn’t hard for him to guess the outcome. It was the first day in weeks that I’d felt bright enough to put make-up on. Which is somewhat ironic.
Toby asked why I was sad and I realised there would never be a good time or an easy way to tell him. So I had to explain to an almost 4 year old why we won’t be “getting a new baby in the spring” afterall.
I told him I was sad because the scan had looked in my tummy and that the new baby had gone away. He cried and wanted to know why. I told him that we don’t know but that sometimes it just happens and that it’s ok to feel sad about it. He said “but I liked our new baby”. I told him that maybe maybe when Mummy gets better maybe I could try to grow another new baby but even as I was saying it I wasn’t sure if it was true.
Thankfully, he then spotted some blue pen marks on my wrist from the nerve conduction studies and asked about them so the conversation came to a natural end.
Of course I wasn’t quite factually accurate in my explanation. The baby isn’t gone. The baby is still there but it seems to have stopped growing about 2 weeks ago. Maybe when I had one of my falls. Or maybe just “one of those things”. Like my last miscarriage though, my body is determined to hang on to it. It’s a cruel world when your body can’t even miscarry properly. I knew right away that I would want an ERPC. Unfortunately it’s not an option for me. Too risky and apparently no anaesthetist in their right mind will go near me because of the Guillan-Barre.
So my options were to go home and wait and hope my body would eventually get the message. Or stay in hospital and have my miscarriage medically managed. So yesterday I was transferred from AMU in MRI to gynae in St Mary’s (which in actuality are just down one long corridor from one another) and here I will be essentially ‘induced’.
Maybe I was greedy to think I could have it all. That I could walk out of hospital, cured of Guillan-Barre and back into my wonderful life and have a healthy baby in my arms come May.
Still, I can’t help but feel like I was robbed when my back was turned. The minute I stopped worrying about the pregnancy and started concentrating on getting myself better, it was over.
Except it isn’t over. The worst is yet to come.
Every year for the past 3 years I do at least one or two facebook status updates along the lines of: “This time last year I had just become a Mum for the first time!” Or “Look at the difference a year makes” (Insert photo of 2 year old Toby vs 3 year old Toby).
I just can’t help myself. I like time and dates and the marking of important ones. Anniversaries, birthdays, even sad things stick in my mind. I keep all my old calendars and diaries and sometimes when I come across them (usually when we are moving house, which we do A LOT) I like to flick through and see what I was doing back then, what day of the week was it? Did I have any appointments? Was I pregnant? On maternity leave? Or at work? Were we in the process of moving house (AGAIN)?!
Maybe I’m weird. Maybe I should spend less time looking back and more looking forward- especially now, with my limited mobility and all 😉
Seriously though, I think so long as you’re not dwelling on what can’t be changed then a glimpse into the past can give a sense of accomplishment and bring a lot of joy and good memories.
Well, this time 2 years ago I was in labour with Rudy. I’d been contracting steadily at home for about 22 hours at this point but things were just starting to ramp up, although I hadn’t called the midwives yet but Chris was inflating the birthing pool, blissfully unaware that the end of my labour would be fast and furious and that our baby would rush into the world at 3.16am tomorrow, born in his waters on to the sofa just 11 minutes after the midwives’ arrival. The birth pool would stay uninhabited until Chris and Toby took a dip the next day.
Fast forward 2 years to present day. I lay in a hospital bed, recovering from Guillan-Barre Syndrome and waiting to miscarry what would have been his baby brother or sister.
I have a lot to feel sad about tonight. But I know I have even more to be thankful for.