A Bad Attitude is Really Really Not the Only Disability in Life.

Can we talk about this?

theonlydisabilityisabadattitude

Like, no.  Just, no. No no no.

If you’re short on time today then feel free to stop reading now and get on with your afternoon, because to be honest- that’s a pretty good summary of what I’m about to say.

I thought I’d blogged about this issue before, but a quick trawl through old posts didn’t turn anything up, so possibly I *thought* about blogging about this before, but then bit my tongue.  Hard.  The way I frequently do.

But I’m feeling a bit, umm…sensitive at the minute.  After a week in which the kids went back to school and I went back to my fitness regime (that had given way during December to evenings under duvets and increasing volumes of Baileys), my body is protesting, I guess you’d say.  Not quite dramatic enough for me to bust out the word ‘relapse’ but enough to mean that I am a quivering wreck- literally.  My hands have been shaking near constantly for about three days, which leads to anxiety, which leads to panic attacks, which leads to adrenaline- which REALLY helps*, obviously.

(*sarcasm klaxon)

And the thing is, throughout all this, I can’t get this fucking meme out of my mind.

It’s not the image.  Let me repeat, for the cheap seats in the back: IT’S NOT THE IMAGE! I don’t know why I’m even bothering to emphasize that, knowing full well there’ll still be someone out there who thinks I am bitterly opposed to such a powerful image of a disabled person displaying power and strength and all the things we’re told by society, a disabled person can’t have/be. It’s an incredible image.  My problem is not with the image.  My problem is with the slogan someone has helpfully superimposed onto it.

 

‘ The only disability is a bad attitude’

Really?

Really?

*raises eyebrow until it lifts off my forehead and floats off into fucking space*

Anybody who thinks that the only thing preventing people from accessing public spaces, education, work opportunities, social events and from taking care of their activities of daily living is their attitude, should refer to the diagram below:

wheretoputyouropinion

Most people reading this will know why this kind of able-ist bullshit bugs the crap out of me, but in case you’re one of those who doesn’t- here’s the deal:

Three years ago I went from being a busy young mum of two small boys, working part-time nights as a nurse on a neonatal unit, running (ok, jogging) 10ks and generally ‘leading a normal life’ to lying in a hospital bed, largely unable to move.

But the only disability in life is a bad attitude, right?! So I got my shit together and got me the fuck outta that bed and GOT ON WITH THINGS.  Because really, it was only my bad attitude holding me back, amirite?!

Umm…no.  You see what was actually holding me back, was my body.  Specifically my immune system, which had decided my nervous system was a foreign invader and begun stripping all my peripheral nerves of their myelin sheaths.  Don’t know what a myelin sheath is? Well, let me tell you- they’re important af.  Without them, your nerves can’t transmit signals .  So, to be clear- my brain was like: LET’S STAND UP

And my legs were like: …………..

*neurological tumbleweed*

 

This kind of message, this idea that anyone can overcome ANYTHING as long as they’re DETERMINED, sounds very aspirational and wonderful, but there’s one teeny tiny problem- it’s not true.  And it’s damaging.  It’s damaging because it makes people- vulnerable, scared people who’s lives might be falling apart, who might be in pain and terrified feel RESPONSIBLE FOR THEIR PROBLEMS.

I know, because I literally sat on my toilet, stared at my legs and thought “Maybe I just didn’t try hard enough last time…come on legs, we can fucking do this.”

And guess what happened?

Nothing.

Of course.  Because pure longing doesn’t actually repair biological damage.

I also know because I told myself, in the brief time I spent at home deteriorating rapidly, that I CAN DO THIS.  I SHOULD BE ABLE TO DO THIS.

THIS being: EVERYTHING.  Driving (yes, I cringe now but I drove around Manchester unable to feel the soles of my feet, unable to change gear one-handed.  I could have fucking killed someone but hey, got to admire my can-do attitude right?  NO.)  Looking after my kids- even though I couldn’t lift my one year old. Dressing myself- even though my hands shook so badly I couldn’t fasten my bra. Walking down the stairs- even though I fell, multiple times.  Yes one fall down the stairs was not apparently enough to convince me that I could not actually ‘do this’.  And what’s even more terrifying is that I was pregnant.  Pregnant falling down the stairs.  We all know how this ends of course, i.e. not well.  It turned out, to my relief that those falls- particularly the one bad fall I had, hadn’t actually caused my miscarriage, and that the pregnancy was doomed from the start.  But I didn’t find that out until a month later.  A month is a long time to carry that burden of guilt.

Able-bodied people (because to be honest, I’m pretty sure that’s who images like this are for- to make able-bodied people feel GOOD and INSPIRED and MOTIVATED etc) suggesting that anything can be overcome with the right mentality are not only grossly mistaken but also contributing to the societal idea that disabled people come in two categories:

1.Wonderful celebrated specimens of humanity- patient, humble, kind, achieving above and beyond what seems possible even for able-bodied people.

2. Bitter, twisted people who ‘let their disability rule their lives’.

We all love “Doctors told me I would never walk again but I did!” stories.  Not so much “Doctors told me I would never walk again and actually they were right and I still can’t walk but hey guess what I’m still a valid fucking human being and actually not your motivational piece” stories.

Disabled people, sick people, chronically-ill people are told “you don’t look ill/disabled” and on the face of it- yes it’s a compliment.  Who the fuck wants to be told they look like they’re about to dodder off this mortal coil?! But on the other hand, it’s a bit of a backhander isn’t it? “You don’t look disabled” i.e. “Well done hiding your disability.  God it would be awful if us ‘regular’ folk were confronted by the notion that we’re all just one biological failure away from disability.  Thanks for keeping it tucked away there, sport.”

I love an inspirational picture/article as much as the next person.  I love stories where people overcome barriers- regardless of what those barriers may be- to achieve things that are important to them.  I don’t want people to stop pushing themselves, to stop shouting from the rooftops when they achieve things that they, or other people thought impossible- whether that’s pull-ups in a wheelchair or just wiping your own ass when you’ve previously had to rely on others to do it.

But let’s not kid ourselves that pushing ourselves- that Positive Mental Attitude is the only thing that’s required.  For disabled and chronically ill people to achieve their full potential- their personal, individual full potential- not the dreams and goals YOU set for them, but their own, a can-do attitude is only a very small part of what’s needed.  Societal acceptance, and wide-scale change is also pretty essential.  Psychological input, a strong support network, and acceptance that some things might not be possible.  Reassurance that even if it turns out you’re NOT capable of pulling yourself up in your wheelchair, or indeed wiping your own ass. that you’re still- shockingly- a valuable person, who deserves to live and is worthy of time, and space and respect.

Of course, my story falls into the “happy ending” category- so far at least because I did walk out of the hospital.  It took time, but I hobbled out on crutches and now my remaining crutch waits in the hall, for a day in the future when I might need it again.  Because the reality is- it isn’t a “happy ending” until The End.  And I’ll be living with CIDP for the rest of my days, and I’m really hoping I have a lot of those left.  There’s no guarantee I won’t deteriorate, that I will remain ‘inspirational.’ Will I be less worthy as a human if I can’t ‘perform’ physically, if I can’t contribute to society in the only way it knows how to measure- labour and profit?

So when I see able-bodied people sharing the above meme, complete with caption (note, not the stand alone image) you should know that I don’t think “how wonderful that you’re celebrating this man’s achievement” I think “Do you even know what the fuck you’re talking about?!”

And if that makes me over-sensitive, well it wouldn’t be the first time I’ve been accused of it.  And perhaps you’ll be better able to understand my ‘sensitivity’ when I tell you that I had a panic attack in my bathroom this morning because as I brushed my teeth I caught sight in the mirror of how badly my hand was shaking, and from there it was only a brief leap for my brain to the memory of when I first bought an electric toothbrush (summer 2013) because I no longer had the strength required to move a regular toothbrush around my mouth.  Yes, I was really that bad.  And it only got worse- the electric toothbrush was a temporary fix, but as my condition deteriorated it became too heavy- I had to use two hands to hold it, and then eventually the concept of brushing my teeth unaided became a pipe dream.  But throughout it all, of course, I maintained my positive mental attitude- which only served to make me an utter bitch to be honest, because I felt I should be able to do all the things I couldn’t and if I couldn’t….well I just wasn’t trying hard enough. That kind of pressure is destructive.  Just ask my boyfriend who bore the brunt of most of my outbursts

“I should be able to do this!”

“Why can’t I do this?!”

“I don’t want to be like this”

“This can’t be my life”

It’s hard enough to accept you’re not in control of your own body, life, future, without being expected to OVERCOME YOUR BARRIERS and FIGHT YOUR DEMONS and ALSO BE INSPIRATIONAL FOR ABLE BODIED FOLK TOO PLEASE.

So please, stop with the able-ist propaganda.  Yes some disabled and chronically ill people might put your complacent asses to shame, but others might be struggling to exist without help, and perpetuating the myth that ANYONE can overcome ANYTHING if they only want it badly enough, is not just insulting, it’s damaging.

 

 

 

 

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One year on

A year ago today, I was admitted to hospital.  I had been trying, and failing to ignore the fact that there was something seriously wrong with me, but finally my body decided to force my hand so to speak, and I lost the use of the lower half of my left leg quite suddenly.

I cried when I was admitted, partly because I’d been awake for about 36 hours, and partly because I was terrified.  I knew I didn’t have a trapped nerve in my back, but that was what I’d been hoping the Drs examining me would say: “Oh, this is just a trapped nerve, we can just ping that back there and, off you go…good as new!”  I’m not stupid, but you’d be surprised at how powerful denial can be.  I’d been experiencing neurological symptoms, like phantom sensations, and twitching and tremors for over 4 months by this point, so on some level I knew I was going to be admitted and my symptoms investigated, I just really really didn’t want it to be true.

The answers didn’t come quickly.  I blogged about that first hospital experience here and here and here.  I did eventually leave a week later with a diagnosis of Guillain-Barre Syndrome, but within weeks I was back in hospital.  I wrote about my experiences during that stay in a series of blog posts: The Fall, The Plan, The ShocksThe Stairs, and The Blow, as well as Funny Hospital Moments.

Of course later my diagnosis was changed to one of CIDP.  Almost exactly the same thing, but instead of being an acute (one-off) episode, it meant I was stuck with it forever.

12 whole months have passed since that first night on the acute medical ward at Manchester Royal Infirmary so I thought it might be a good time to talk about how CIDP has changed my life (or not, as the case may be).

 Life with CIDP

I have symptoms every day.  I usually wake up with nerve pain in some part of my body, most often my arms or legs along with a kind of aching and stiffness in my legs, as though I’ve done a really long walk the day before (usually I haven’t, but if I have, then the feeling is about a million x worse, obviously!)  During the day I manage to do pretty much all the same stuff I’ve always done, it’s just that some stuff is harder, or takes more effort than it used to.  Fastening buttons and shoe laces is a bit of a nightmare as fine motor stuff (especially if it’s repetitive) causes tremors in my hands, along with a pins and needles type sensation in my hands and fingers.  I’ve come to terms with the fact that I’m never going to be a knitter 😉

I also get random short-sharp pains, which can occur in any part of my body at any time.  They only ever last a couple of seconds absolute maximum, but sometimes come in clusters.  This is where the damage to my nerves is preventing electrical signals from passing through, and the sensation genuinely is a lot like being given a small electric shock out of the blue.  They’re often in my arms and legs but I also get them in my body.  I also get muscle spasms and twitching, (the technical term being myoclonic jerks, or seizures).  These are one of my more visible symptoms, you can see the muscles in the tops of my arms or in my calves visibly twitching, and I have particularly bad nerve damage in my feet, so that my 2nd to big toe can often be seen twitching away to itself.  Psychologically this is one of the harder things to live with, which may sound ridiculous but I challenge you to fall asleep, no matter how bloody exhausted you are (and I often am) when one of your toes thinks it’s performing in River Dance.  Go on, try it, and I dare you to tell me it isn’t the most infuriating thing you’ve ever experienced in your life!

Another daily feature is fatigue.  If you haven’t heard of Spoon Theory, then please go read about it right now, not only will it save me explaining the energy involved in normal day-to-day activities with CIDP but it gives an insight into what it is like for everyone with almost every chronic health condition I can think of.

For the most part those are the only difficulties I have in terms of daily life.  Providing I have had my IV Immunoglobulins within the last 21 days or so.  I have them every 28 days, so you can see that there is a gap, where the effects of the IVIG are wearing off, but I don’t get topped up right away.  It used to be the case that the final week before my next treatment was pretty much a write-off, but it’s improved quite a bit in the last few months and I only really notice myself deteriorating in the final 4 or 5 days before my next appointment.  That’s when the biggest component of CIDP, muscle weakness presents itself, and when in the past I would have to resort to using a crutch to walk.  Thankfully I’ve improved, and haven’t needed to use my crutch since February, which is amazing, but I do still struggle.  The stairs are one of the biggest challenges.  I can still manage them, they’re just tricky, and I become unable to carry anything up or down them as I need my hands free to use the banister/wall to help myself up or guide myself down.  I can’t lift the kids, or anything else heavy or bulky.  I can’t open bottles, packets or cans.  I struggle to get up from sitting in a low chair, or from kneeling or squatting.  I become ridiculously clumsy (yes, even more so than usual) and my tiredness levels reach ZOMBIE status.

Then 28 days after my last dose I go back to the hospital for another 80g of Privigen.  The day after IVIG I’m usually pretty groggy and at my worst in terms of symptoms but then within 24 hours of my infusion finishing it kicks in and I’m back to my baseline.

 

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I saw my consultant last month and he’s pleased with how things are going and offered me the chance to be considered for a clinical trial where I’d be able to self-administer my own IVIG subcutaneously at home on a weekly basis.  There wouldn’t be much difference except for the freedom of being able to have my infusions at home, at a time that suited me, and it would remove the day I need to spend in hospital every month.  Plus my veins are tricksy, so it would mean I could avoid having health professionals digging away at them trying to find a good one.  (Subcutaneous administration is where a very fine needle is inserted under the skin, rather than into a vein).  There is a loooong waiting list for the trial though, and strict criteria, so it’s not a guarantee, but then nothing is when you’re living with a long term medical condition, especially one so rare and not well understood.

In terms of things I can do to help myself, it’s really the things we should ALL be doing to give our bodies a fighting chance at dealing with anything that it’s battling.  That is- to put more or less the right stuff in, and treat it with a bit of respect.  So I’m talking good food, regular exercise, plenty of sleep and zero stress.  You know, nothing too difficult to get right 😉  Other than that, I just need to be careful to avoid people with infections and viruses because of having a lowered immune system 75% of the time.  So, again- not too tricky!

There is a chance I could go into remission spontaneously, it’s not unheard of but it’s not too common either.  Most of the success for long term remission has come from the use of pulsed steroids over a long period of time, and my trial of pulsed dexamethasone over the christmas/new year period last year has convinced me that if several months of steroids are what it takes to go into remission, I’d rather live with CIDP.  And I’m sorry if that sounds overly melodramatic, but it’s true.

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Never have I felt so ill, so depressed, and so disabled as those weeks I spent scoffing steroids and feeling like I was turning into a stranger, both in body and mind.  And it didn’t even work anyway.  Although, arguably I didn’t give it a decent chance.  But see above re: Worst Time Ever.

So, that’s really it, for me.  That’s how life with CIDP looks for me at the minute.  Lots of twitching and trembling, with a bit of nerve pain and muscle weakness thrown in for good measure.

Except of course, that isn’t it at all is it?  The effects of CIDP aren’t just the physical symptoms I live with but the overall impact it’s had on my life.   One year ago was the last shift I worked as a nurse.  The night before my admission to hospital I was actually at work, terrified to call in sick because of my less-than-desirable sickness record, I’d gone in despite the fact that I couldn’t open medicine bottles, or tear open packs of IV fluids, or write my notes without my hands beginning to shake uncontrollably, or connect a syringe to an IV line without assistance.  Basically I shouldn’t have been there, and when I drove home and realised I could barely push my foot down on the clutch, and needed 2 hands to change gears because the effort was too much for one, then and only then did I realise just how badly wrong things were and how lucky I was not to have had an accident or made a mistake as a result of it.

So, after being off long-term sick, I handed in my notice in June and I’m not planning to go back to nursing, for the foreseeable (or even distant, if we’re honest) future.

Would I have left nursing if I hadn’t acquired and been diagnosed with CIDP?  Maybe…probably, at some point.  But it definitely accelerated the decision considerably.  I have almost finished writing my first book.  Would I have done that without having CIDP?  Yes, without a doubt.  But again, the CIDP experience has definitely been like a jolt of electricity (pun very much intended) forcing me to put into action NOW things that I’ve been planning to do for ages.  The same goes for my doula training, and looking into fostering too.  And even silly stuff like getting my nose pierced, after wanting it done for about three trillion millenia (ok, since I was 12).  I am so over “Maybe…tomorrow…” and totally into “NOW, NOW NOWWWWWW!”  which isn’t always a good thing actually, just ask Chris who has to live with me and my impulsivity every day.

There are negative aspects to that too though, being aware of your own fragility and mortality isn’t always helpful.   Because I ignored my body’s signals for so long last year, I am now over-alert, so a pimple is a life threatening rash, and a headache is surely a fatal tumour.  It’s ironic really, that I managed months of “la la la” metaphorical sticking my fingers in my ears when there really was something very wrong, but now I over-react to every tiny thing.

I can’t decide if the experience of suddenly losing control of my own body and being diagnosed with CIDP has fundamentally changed me as a person OR if actually this is who I always was, and it has just been a catalyst for allowing my real self to come to the surface.  Either way there’s no denying that the reach of CIDP has gone beyond “Oh, I sometimes have mobility issues and shaky hands” to something much much bigger, that is harder to explain.

Tonight I’m just glad to be where I am, at home with my boys, with a diagnosis and a management plan. My heart goes out to all those battling chronic illness without a clear idea of what it is they’re actually fighting, because for me, as much as people expected me to be upset when I was told I had CIDP, the relief of knowing what was happening to me stripped away so much of the fear and worry, it was almost a relief in some ways to just have a name for it and an idea of what might help.

I should be honest here and say that when I first became ill and googled my symptoms (don’t EVER do that, by the way!  Trust me!)  the first few hits were MS, MND/ALS, Parkinsons, and further down the page Guillain-Barre.  One of the junior doctors who examined me during my second hospital admission suggested a brain tumour as a possibility (in a very positive way, I might add “Maybe you just have a brain tumour and we can get in there and cut it right out!  Better that than GBS, I wouldn’t wish that on anybody!”.  No, I am not making this shit up)

So I don’t want to celebrate not having those conditions, because how vulgar is that?  Nor do I particularly want to celebrate what has happened over the last year BUT I do want to acknowledge it and this (incredibly long) blog post is my way of doing that…along with a teensy glass of rum and coke of course 😉

 

How I Am

Several lovely people keep checking in with me to see how I am. I think they mean “How I am feeling” as opposed to say, “How I am still alive after everything that has happened these past couple of months“, although frankly that feels like a relevant question too.
The answer is “Ok”. And also, “I don’t know”.
I’m able to attend to most of my daily needs- showering, toileting, getting dressed, eating and drinking, entirely independently. I can walk without help and without falling down. I can even manage the stairs with my trusty crutch. I left the house for the first time yesterday and that was totally fine. So really, when I think about it, I’m doing ok.
Certainly compared to this time 2 weeks ago, when a bruised and defeated version of myself lay in a bed on AMU hooked up to the magical 2nd dose of immunoglobulins that seemed to kick start my recovery. In fact some days when people ask me how I am, I feel like resorting to hyperbole and images flash through my mind of me cartwheeling around the room shouting “Spectacular!” and “Superb!” because physically, although I’m probably only about 85% back to normal, compared to how bad I was I feel about a million times better.
On the other hand, when people ask me how I am, I feel stumped. A simple question leads to a spiral of confusion. At any given point in time I find it almost impossible to identify a singular emotion that would cover my current state of being.
I feel genuine happiness at being home and reunited with Chris and my boys. I feel so much gratitude and huge crashing great waves of relief at how well my recovery is going. I feel stressed about our impending house move, and frustrated at the timing and how inconvenient it is and how little help I can be on a practical level. Although there is also a tinge of excitement mixed in there, of fresh starts and new beginnings. I feel worried about family and friends, who have their own struggles and who’s battles, unlike my own are not yet definitely won. I feel terrified that this may yet turn out to be only an interlude in my own battle and that my symptoms might come back or I might wake up one day to find I can’t move again.  I feel sad about the loss of our baby, about the plans we made that now won’t be and the space in our future that now waits to be filled, or not. And occasionally I feel overwhelmingly and irrationally angry. I’m talking pure unapologetic rage. Towards people, towards things, towards life itself. It comes out of nowhere and in a flash it’s gone again, leaving me wondering if a side effect of IVIG therapy is some kind of Banner-esque transformation.
The fatigue aspect of recovering from Guillan-Barre has been spectacular. Always inclined towards narcolepsy, in the sense that I have an ability to fall asleep any time any place (a distinct advantage when it comes to juggling shift work and motherhood) I now find myself like a cat. Delighted to be alive and yet unable to fully appreciate what life has to offer because I need to spend about 16 hours of every 24 asleep. Waking up is a several hours long process compared to getting to sleep which doesn’t even require my eyes to be closed before the process begins.
Today I didn’t get out of bed until 10am. I spent most of the afternoon sat on the sofa in my pyjamas wrapping ornaments and picture frames in bubble wrap and placing them in a box because it was the most “helpful and yet restful” thing I could think to do. Even so by teatime I was unreasonably exhausted and I fell asleep whilst putting Toby to bed, before even he himself went to sleep and woke up an hour or so later, summoning up just enough energy to transfer myself into my own bed before zonking out again.
Admittedly I’m awake now but that’s only because Chris came to check where the hell I had got to and his presence in the room woke me up (and scared the shit out of me) so I decided to sit and drink some ribena and potter a little on my phone before falling asleep at a slightly more reasonable hour for someone (well) over the age of eight.
When I think of how I used to spend entire days from 6am until 7.30pm in sole charge of the kids and then go work a busy night shift before getting back home at 8am and then sometimes sleeping for a couple of hours or maybe not at all before continuing where I left off with shopping and cooking and cleaning and playing etc. It’s hard for me to comprehend how I was even still alive.
These days all I can manage is some light packing and/or childcare duties (after about 12 hours sleep) and I’m done for. It’s like getting used to a whole new pace of life. Pace being the operative word and something I think I am going to struggle with because I like everything doing yesterday and find it difficult to differentiate between urgent and non urgent tasks. Chris calls it “impulse control issues” as it often leads to me undertaking ridiculous tasks at the most inopportune times because I can’t bear to just let it go for another minute. I know I am going to have to learn though if I want to keep the momentum going with my recovery without setting myself back. It’s just going to be hard.
So, if you ask me “How I am” and it takes me a few minutes to formulate a reply. Or indeed if my reply is a garbled nonsensical string of words, then you’ll understand why.

Funny Hospital Moments

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)

BP: 82/46

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.

The Blow

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.

The Stairs

Written on Thursday 10th October

I just passed my stairs assesment! Woot woot. It was a pass/fail sort of thing but if it had been graded I reckon I’d have got an A-

Good attitude, ability to follow instructions and enthusiasm. Points deducted for nerves, occasionally forgetting where my crutch is supposed to go and speed (or rather, lack of it).

I can’t believe that in just one week stairs have gone from being my arch nemesis to being just another normal everyday thing that I can manage. Admittedly with a lot of extra effort and a crutch but even so.

We no longer need to consider bungalow living, unless we want to. There is a certain appeal to it that I keep coming back to- of having everything right there on the same floor. Plus I like that it’s a bit different and non-traditional, in this country at least.

On the other hand, the dog could and would go anywhere he liked. Cat fur on the bed is bad enough, Fudge sheds about a guinea-pigs’ worth of fur each and every day. And cooking smells would get everywhere. Plus, it’s just not very sexy is it, if we’re honest? Living in a bungalow under the age of 30?

So, it’s good that we now have other options 🙂

The Shocks

Written on Wednesday 9th October

So I have just returned from the strangest experience of my life, which involved sitting on a bed and.being administered a series of electric shocks in my feet, legs, hands and arms by an Irish doctor who must surely have one of the most bizarre jobs available in the NHS: Neurophysiologist.

The shocks themselves ranged from the mildly curious and slightly irritating to the profoundly excruciating and although I think I did a pretty good job of being brave (which is to say- I didn’t cry, scream or punch anyone in the face) it would have been obvious to anyone in the room, from my sweaty palms and screwed up face that I wasn’t exactly feeling relaxed.

Mid way through my torturer, sorry I mean doctor asked me where I was from. My brain, clearly scrambled from the pain could not compute…”From? You mean, like where was I born?…” He probably thought I had some kind of learning difficulty. “Yes, where are you from originally?” I told him Yorkshire and he seemed surprised. When I asked why, where did he think I was from both he and the nurse/technician (she never actually introduced herself so not sure of her official role) answered in unison “Welsh”.

That made me laugh. I explained I had been living with a Welsh man for 9 years so maybe I’d picked up a twang or something. Although I’m certain his family would find the suggestion hilarious.

The results of my torture, sorry I mean Nerve Conduction Studies were abnormal. Which is good, in a funny sort of way, because it confirms what we already knew- that I have a demylenating (sp?! neuropathy aka Guillain-Barre Syndrome or possibly CIDP (the chronic version) but the neurophysiologist said that my results this morning are more indicative of an acute episode, which is very reassuring.

Being electrocuted and mistaken for being Welsh: what a morning.