on being (begrudgingly) realistic

I am not renowned for realism, it has to be said, and so in cases where it is required I am a late-adopter, holding out hope long after it ceases to be sensible to do so.  That’s pretty unusual for someone with such high levels of anxiety I think, and at odds with my general belief that EVERYTHING IS GOING TO GO WRONG…and yet I hope, and hope that it won’t.

I particularly hate the need to be realistic when it relates to my chronic condition.  Even when I was really quite acutely unwell and newly diagnosed I was all “I totally can shower myself!” When it was quite plain for all to see that I could barely lift a spoon to my mouth to feed myself, never mind transport myself to a bathroom and attend to my hygiene needs without falling down flat on my face.

I was like ‘the little engine that could’, and this was my face whenever it turned out that actually I couldn’t:

pissythomas

 

(Incidentally, if anyone ever requires an image of a pissed off looking Thomas the tank engine- there are loads to choose from.  The dude has issues it would seem.)

 

Four years later, honestly, not much has changed.  I still like to think I can do everrrrrything, and you don’t want to be around me when I find out that I can’t.  I am getting better at accepting my limitations (I think?…Ok, maybe not…) but still don’t often fully realise them as part of my self-image and awareness.  This leads me to do things like apply for jobs that are actually beyond my physical capabilities.  That’s not a random non-specific example, that’s an actual thing that I did last week- securing myself an interview for a job that in reality, after considering it at length, I probably can’t actually physically manage- at least not reliably anyway.

Honestly?  It totally sucks.  Every time I tell myself that I can DO WHATEVER I WANT, and then struggle to drain a pan of pasta, or open a can of beans, or fasten a set of buttons without looking like I have the DT’s, I am reminded that actually Positive Mental Attitude is only a tiny part of the battle when it comes to life with CIDP, and that at the end of the day- it’s my nervous system that’s in control, not me (terrifying for anyone, but particularly a control freak like myself.)

But I decided that the right thing to do in this case, even though it felt pretty miserable, was to step back, and decline the post.  It’s one thing for me to be affected by CIDP, when I’m having a bad day or staring down a potential relapse, but in a job role where someone else would be physically dependent on me, it *wouldn’t* just be me that was affected.  So there it is.  Sometimes you want to do a thing, and think you can do the thing, but you actually can’t do the thing, and it’s better to realise it before you’re committed to the thing.

So that’s where I’m at.  Back in Job Search Hell.  I’m trying not to panic or feel too sorry for myself, because really what will that achieve?  But on the other hand I’m definitely feeling a bit sobered by the slowly dawning realisation that shit, I really am stuck in this malfunctioning body hey?

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.

 

 

 

 

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.

1487322_10153663560475085_1486328911_n

 

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 😉

 

A Rant about Tax Credits

I’ve given this post such a self-explanatory title to allow those of you who may be uninterested in my perspective on the tax credits system to skip past it.

Go on, merrily skip on your way.  If you stick around you’ll only be party to my profane ramblings about the ridiculousness of a system that is designed to ‘help’ people but often times does anything but.

No…still not put off?…You sure?!

Right then…allow me to begin.

Our story begins on a cold dark night.

Nah, just kidding.  It begins in the autumn of 2010 when my boyfriend did something truly shocking and horribly selfish…he decided to go back to university to retrain and further his career prospects and opportunities.  I know, disgusting, right?!

So I called up the tax credits helpline and told them that he would no longer be working.

“Well, you won’t get any money then”

“Um…but I’m still working?”

“Yeah but you’ve BOTH got to be working to claim”

“Err…right.  But he’s going to be a full time student”

“That doesn’t count.  Unless he’s in prison, or leaves you…you won’t be getting anything”

I’m sorry, UNLESS HE’S IN PRISON OR LEAVES ME?!

Are you seriously, I mean, seriously telling me that I would be better off, financially if the father of my children was a fucking criminal or irresponsible wanker?  Is that the kind of message we really want to send to people?  Crime doesn’t pay!  Except that…err…it does.  So here, have a few extra quid for having the good sense and foresight to only get knocked up by someone with an irrepressible urge to mug, maim or kill?!

WHAT. THE. FUCK.

Then again, I called them this morning, to update our details now that I finally have both of our P60’s in my possession.

phone

The conversation was basically a lot of sighing (on her end) and stunned silence (on mine)

Apparently we were overpaid last year.

“Why?”

“Because you didn’t tell us about these changes to your employment and income”

“I’m telling you now?!”

“Yeah but you should have told us when you became unemployed in February”

“I didn’t become unemployed in February”

“No, but you’d been off sick for more than 28 weeks”

“Yes.  But I was still employed and being paid sick pay?!”

“That doesn’t matter.  For the purposes of tax credits you’re classed as unemployed once you’ve been off sick for more than 28 weeks”

Oh, right.  I see how it works now.  You make up rules, and we’re all just supposed to magically fucking know what they are!  I totally get it!  Genius.

Here, how about I make up some fucking rules of my own, like: If you’re employed, you’re fucking employed?!  That seems like a good one to start!

“So, you’ll owe us some money back because between February and April you weren’t working enough hours to claim tax credits, but were being paid them”

“Why weren’t we working enough hours?”

“Because you were unemployed (NO I FUCKING WASN’T!  YOU JUST MADE THAT SHIT UP!) and your partner was only working 16 hours a week”

“I was off sick from work, where I’m contracted to work 20 hours a week, and my partner has been working 38 hours a week (or more!) since November last year”

“Well, we didn’t know that.  You should have called us last November”

“I kind of had a lot on my plate at that time, what with being in hospital and all”

“I understand that, but this is a joint claim, so your partner should have called us”

You’re right.  He totally should have.

It’s just that he was being an utterly selfish bastard AGAIN, caring for me, his paralysed girlfriend who had just been diagnosed with a rare neurological condition, and looking after our two small children, you know- the ones you won’t give us any money towards childcare for?  Yeah, those ones.  Also, in November, his Mum who was waiting for a liver transplant, was diagnosed with lung cancer, and she died in the January.

And all the while he was working the increased hours- you know the 38 a week, that we forgot to tell you about but no, you’re right, it was an unacceptable oversight on his part to believe that you could access that information yourself…wait…what’s that you say…you don’t need me to supply you with our income details for last year because you can access that information yourself?…OH MY FUCKING GOD! WHAT IS WRONG WITH YOU PEOPLE!

So, apparently we will owe them some money back, from that (imaginary) period of time when I was magically unemployed without knowing it, and when Chris was working 16 hours a week that for some reason took him 38 hours to do.  But don’t worry- they’re not going to ask us for a cheque or anything, they’ll just “take it off of the coming year’s award”.  I.e. if they WERE going to give us any tax credits for 2014-2015, they will now be giving us less…or none.

Which is fine because I DON’T WANT THEIR FUCKING MONEY ANYWAY!  But sadly I need it.  Hence the extreme frustration at being forced to deal with their inane system and exasperated phone advisers, who always act like your changes in circumstance are a massive inconvenience to them…

“You moved house when?! *sigh* And you took a second job to survive *sigh* So what date did that employment start? *sigh* Oh that changes everything, now I’m going to have to switch screens *sigh*”

Now, if you’ll excuse me, I have to go pour myself a glass of wine that I can’t afford.

Yes it’s 10am on a Tuesday morning, what the fuck is your point?!

 

 

CIDP and me

It’s been a while since my last post, and an even bigger while since the one before that. I don’t really know what I’m doing with this blog anymore, it started out as an attempt to maintain a slippery grasp on my sanity as I embarked upon parenting two children under the age of two, and here I am, with my boys both over the age of two now, finding myself writing about my life as it spirals out of my control thanks to a crazy thing called CIDP.
I realised yesterday that I haven’t ever really explained to some people what this condition I’ve been diagnosed with, and is quickly taking over my life, actually IS so I thought I’d give it a shot.
CIDP stands for Chronic Inflammatory Demyelinating Polyneuropathy.  It’s an autoimmune condition, which means my body is doing this to itself. No one knows why but the most likely scenario is that at some point last year my body was exposed to a virus, and for reasons unknown, when my immune system came to attack that virus it became confused and started attacking itself instead. More specifically attacking the myelin sheath that covers and protects the nerves in my peripheral nervous system, which causes them to function incorrectly, or stop functioning altogether.
Now before I lose all but the medically trained of you, with all this talk of myelin sheaths and whatnot I’ll explain what that means in real terms.
It means that without any treatment I would likely be totally paralysed within the space of approximately 12 weeks. The closest I have come to that is when my symptoms first presented and were thought to be a mild version of the acute form (Guillan Barre Syndrome). Within 8 weeks of waking up with a dead leg, I could no longer get out of bed or go to the toilet independently, I couldn’t walk without the assistance of 2 people and I couldn’t lift my arms to a 90 degree angle, meaning that washing and dressing myself were pretty much out of the question also. Even very simple things like feeding myself or changing position in bed were difficult and exhausting.
There is no cure for CIDP, it won’t ever go away, but it can be ‘managed’, which is to say that there are treatment options- obviously, as here I sit, typing away with a cup of tea next to me that I walked to the kitchen and made all by myself. Unfortunately, none of the treatment options are straightforward, or guaranteed to work.
So far, there is one option that not only works for me but works fantastically well, enabling me to live an almost ‘normal’ life for 3-4 weeks at a time. That is Intravenous Human Immunoglobulin Infusion or IVIG.

So far I have had three courses of IVIG, in October, November and January and responded brilliantly each time. Yes it has meant being admitted to hospital for between 4 days to a week on each occasion and yes it is an invasive procedure that isn’t without risk but is it worth it to be able to walk out of the hospital unaided each time following it? Hell yes!

Many people with CIDP have regular IVIG on a long term basis. I say many, it’s so rare there really aren’t that many of us to begin with (with between 1 to 4 people in a million newly diagnosed each year) but of the few of us that exist, a large proportion rely on IVIG.
The bad news is that there is an international shortage of immunoglobulins, and not only that but it’s expensive. And I mean, really really expensive.
How much would you pay for your life? What’s it worth to you to be able to get yourself out of bed in the morning and put on some clothes? To what value do you hold being able to walk, drive, go to work? What price would you put on being able to pick up your own children for a cuddle if they wanted one?
What if the number was more than you could ever hope to afford? What if your only chance was if an organisation such as the NHS agreed your life was worth it?
So far I have had 370g of immunoglobulins, at a cost of £19,980.
That’s just the cost of the medication itself, not the cost of the IV giving sets, the pump, the trained nurses, an obs machine, an overnight stay in hospital, 3 meals a day etc…just the immunoglobulins. Just the thing I need to walk, to move, to carry on leading an arguably ‘normal’ everyday existence.
If I were to have a maintenance dose of IVIG once a month it would cost the NHS £4,320 a month.
How many of you think I’m worth it now?!
It’s one of the NHS’s biggest expenditures. So (understandably I think) there are strict criteria to fill if you’re going to be approved to have it as a long term therapy. The main criteria being obviously a diagnosis of CIDP (or one of the other approved conditions) but also that you have tried other (read: cheaper) treatment options first, namely corticosteroids.
There has been some recent evidence that suggests ‘pulsed’ (which is really just a fancy way of saying ‘intermittent’) steroids, if taken over 6-8 months, can cause a period of remission in patients with CIDP. For anyone who doesn’t really know what that means, it would mean that for a certain length of time (maybe months, or even years) I would neither have any symptoms of CIDP nor require any treatment for it. Which would, as I’m sure you can imagine, be fucking awesome.
So it was for that reason that I spent the last few days of December drugged up to my eyeballs on a hefty dose (40mg per day) of Dexamethasone, one such steroid. I had to take 20 tablets per day between Christmas day and the 28th December. Fortunately they didn’t kick in immediately, but when they did, boy did they!
I basically spent 5 days in a Dex-induced fog, in which I found it hard to concentrate on anything, kept dozing off during the day but couldn’t sleep at night, felt very ‘spaced’ and ‘out of it’, felt starving but also nauseous. I had awful acid reflux and indigestion (despite also being started on a PPI called Omeprazole, which is a medication designed to reduce the amount of acid in your stomach and thereby prevent or minimise acid reflux).  My fingers and toes swelled and felt like hot, numb sausages on the ends of my hands and feet, my face rounded and became flushed, I had headaches and pressure behind my eyes  and my vision was altered, my legs felt like they were made of wood, and every single motherfucking muscle in my entire body ached like I had been beaten within an inch of my life, especially my neck and shoulders. On the whole, it was one of the least pleasant experiences of my life and not one I care to repeat, certainly not at monthly intervals.
I had hoped, that having given the steroids a go, I would be considered for funding for long term IVIG, but on seeing my consultant the day before yesterday, I learnt that in order for that to happen, more hoops must be jumped through and the next hoop is Prednisolone. Another member of the delightful steroid family (I just can’t wait to find out how strong the family resemblance is- NOT!) I will be taking 40mg but this time every single day (rather than for 4 days out of the month then a break) for the next 8 weeks.
If I deteriorate twice within that time, needing further IVIG alongside the prednisolone then my consultant is satisfied that proves I am a steroid non-responder, meaning my chances of being granted approval for regular IVIG are good. If however the prednisolone works, and actually improves my CIDP and keeps me walking around like a regular person, well then I’ll be on it forever and ever, for the rest of my life.
Sure, over the years it will turn my skin to tissue paper that breaks and weeps when so much as a cashmere fucking jumper brushes against it, and sure my head will look like a beachball on top of my body which will look like a PLANET, and sure it will cause my bones to crumble and break when I so much as stand up but HEY, at least there’s a treatment…right?!…
You may have guessed I’m unenthused by the outlook of the rest of my life on steroids. Over time I would be weaned down from 40mg, to a dose that still worked but minimised side effects (possibly as low as 5 or 10mg daily) but I still don’t relish the idea of being on something so potent for the rest of my life long days. I am intending (or at least fucking hoping!) to be around for quite some time yet, and I’m only 29 for Pete’s sake.
The fact is, all my despair at the idea of another 40 years on steroids may turn out to be for nought anyway, as if the prednisolone doesn’t work, well then I will be facing the rest of my life on IVIG instead. So far I’ve had no nasty side effects from IVIG, barring one hell of a headache when my infusion rate was increased (I’ve learned the trick to counter this is to drink your entire body weight in water, seriously, just keep asking nurses, support workers, students, or anyone who walks by your bed, to fill that water jug up!) That doesn’t mean I won’t ever get any nasty effects from IVIG though. Everyone responds differently, and although they try to keep you on the same product, from the same manufacturer (I always have Privigen), you can respond differently each time.
Some people are able to increase the length of time between treatments over the years, stretching themselves from a 5 weekly cycle, to perhaps a 6…7…or 8. Other people start out needing it every 5 weeks and then wake up one month and find they’ve deteriorated at 4 weeks since last infusion…or 3, and for some people it stops working altogether and they need to try something new (There are a couple of other treatment options that are less common that I haven’t mentioned here because, frankly, I don’t know much about them and am unlikely to need them anytime soon since I’m such a HUGE IVIG success story).
Right now, just 9 days since my last dose of IVIG, I am feeling good. I can walk around, get up and down stairs, shower and dress myself and all that jazz. I can be left alone to take care of my children, and we can get out, to the shops and the park. Hell I can even drive (although that is always the first thing to go, when I do decline, as the idea of being behind the wheel and losing control of my limbs, is, I’m sure you’ll agree, shit scary).
The hard bit is knowing it won’t last. That I have about 2 more weeks of this before I start to become fatigued. Then after a week of being functioning but exhausted begins the slow decline…the pins and needles return, usually in my hands, then the twitching begins, where my nerves are misfiring electrical signals causing muscles in my feet/legs/arms/torso/face to pulse and/or visibly twitch.
From a mobility point of view, first up the stairs will become an obstacle, getting up them will feel akin to scaling Everest every time I need a wee, then getting down them safely will become an issue. I will start to struggle when I try to get up from kneeling, or squatting, and need either a hefty piece of furniture, or a sturdy person to pull me up.
Within days I will be walking like a pirate with wooden legs, not bending them at the knees at all (or I’d fall!) and eventually Chris will persuade me I should be using my crutch, and out it will come from it’s hiding place behind the coat rack in the hall. Within a couple of days again I won’t be able to lift either of the children, or anything heavy or cumbersome at all. It only takes a few more days for me to become ‘unsafe’ to be left in charge of my own children, as I won’t be able to necessarily get from sit to stand so can end up literally stuck on the sofa. And since I can’t walk or drive at that point, if anything were to happen, I wouldn’t even be able to get them to a Dr, or hospital, or whatever they might need. So then Chris has to be off work to effectively ‘take care’ of all 3 of us.
So you see how, slowly but surely it manages to take over. And of course at some point along the way, someone, my consultant, or my GP, decides enough is enough and I am readmitted to hospital, and after just 60g of IVIG I am usually off my crutch and mobilising safely, and certainly by the time I’ve had the full 110g I am pretty much back to baseline and feel like I’m ready to take on the world again.
And then it’s just a case of rinse and repeat.
A lot of people have expressed horror at the idea of being reliant on immunoglobulins for the rest of my days, and to be honest- it aint my idea of sunshine and lollipops either.
If I were approved for regular IVIG long term though, those last couple of weeks, where my body stops working and life falls apart a little, would cease to exist. Instead, just prior to my decline I’d go to Salford where I’d receive 80g of Privigen as an outpatient (i.e. sit hooked up to an IV for a day, come home and go to bed then go back and do it again the next day) and that would be me done for the month. So no it isn’t ideal, but neither is the current situation of being admitted to hospital every 6 weeks or so, and neither are the steroids with all their nasty side effects, and neither is the entire situation or the diagnosis or any of it.
Ideal is not an option anymore. The only option is coping, surviving…carrying on. So that’s what I’m trying to do.

The Funny Thing (Part 3)

D-Day (Diagnosis Day) came on Thursday 29th August, when, armed with my Lumbar Puncture results the medical consultant informed me that it was “highly likely” I had Guillain Barre Syndrome and that they wanted to transfer me to a neurology ward at Hope Hospital where I could be observed, and if necessary, given treatment in the form of Immunoglobulins.

I called everyone who needed to know to notify them of the news and tried to prepare myself mentally for a longer stay in hospital.  Then after lunch I was seen by one of the neurology consultants from Hope, who after reviewing me, and my LP results decided that all things considered I may not need to be an inpatient after all. By that point it had been 3 weeks and 1 day since my symptoms had first presented, and I’d been stable, with no worsening of my symptoms, for a few days. He wasn’t keen to treat me with Immunoglobulins as they’re most effective if used soon after symptoms begin, and at that point were unlikely to affect my long term outcomes. He asked how I felt about going home. I could have kissed his shiny bald head but settled instead for “I’d love to” and he said I could so long as I agreed to come back if I deteriorated (obviously) and that I’d need to be seen as an outpatient in clinic in 6-8 weeks time.

So, just as they’d sorted out my transport to Hope it was cancelled and they started my discharge paperwork instead.

Coming home was surreal. Everything was the same but I wasn’t. So there I’d been, in hospital thinking I was actually doing pretty well, mobilising around my little side room and suddenly at home I discovered I could barely make it off the sofa (too low and squishy) and don’t even get me started on stairs. Bungalow living is the future, I’m telling you.

I think I cried every day of my first week back home.  Everything was so much harder compared to in hospital, and the shock of how much I’d deteriorated without knowing and how little I could really do was hard to bear.  I also couldn’t, and still to a certain extent haven’t, really come to terms with my diagnosis.  So much about my clinical presentation didn’t quite fit GBS (which is why I suppose they kept me a week before doing an LP) that when I was discharged I kept thinking “What if they’re wrong?”

In case you’re wondering, googling doesn’t come up with anything reassuring at all, the top 3 internet diagnoses for my symptoms are Multiple Sclerosis, Guillain Barre Syndrome and Parkinsons.  So out of the three I seem to have the best possible outcome (although also the rarest).

It’s now been exactly three weeks since I was discharged and just over six weeks since that morning I woke up with “a dead leg”.

In six weeks I have gone from being an independent, self-caring 28 year old, working part time, raising two young children, doing (let’s be honest) the majority of the housework, walking, driving, swimming, hell even occasionally running, to…this. The new, hopefully temporary, version of myself.

I can walk.  Not well, not fast and not very far but I can do it. I can just about dress myself, it takes time and I can’t fasten my own bra but since I rarely leave the house that isn’t as big a problem as you might think.  I can shower myself but I can’t wash, dry or straighten my own hair, or even tie it in a bobble some days. I can get in the bath but not out of it.  I can make myself a drink although I need both hands to pour the kettle and I wouldn’t exactly say it’s safe. I can make a sandwich. I can put clothes in the washing machine and take them out again.  I can just about dress my children although only if they’re co-operative (ha!) and even then it takes a while and socks are a massive challenge. I can change a nappy, just about.

I struggle with stairs. They’re a necessary part of my everyday life but also the bane of my existence. I have to have both hands free, and I have to go one step at a time. I fell down the bottom half of the stairs last week as one of my legs just randomly gave way and it was terrifying (and painful).

I can’t work (obviously) I can’t cook, or clean, or take my children out on my own. I can’t drive, or swim. I doubt I’ll ever run again.

I feel like a lot of the things that make me who I am (being a busy young Mum, working nights, getting out and about most days, being independent etc) are no longer true, in which case, what is left? Who the hell is this person who need someone to open packets for her, and wash her hair and put on her shoes?  I have no idea.