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 SCIg

As my one year anniversary on SCIg approaches, I thought it would be appropriate for me to do a post about what life has been like these past 12 months, and how doing my own subcutaneous immunoglobulin infusions (which is what SCIg stands for) at home has impacted my life.

scig

You may remember that prior to SCIg I was on regular IVIg, which I had in hospital once every four weeks, and was truly amazing and improved my life in so many ways.  But you may also remember some of the pitfalls- having to spend one day every month in hospital, having nurses and doctors digging around for a decent vein, bruised arms, headaches afterwards unless I’d managed to drink the required 2 litres of water during the infusion, and of course the inevitable dip in my mobility and increase in symptoms in the last few days of each month before my next infusion was due.

Well…with SCIg, there is none of that!  It’s been fantastic.  I used to have 80g of Privigen every four weeks, so initially I was started on 80g of Hizentra (the subcut version of Privigen) across the month which I have been doing as two infusions a week (i.e. 10g twice a week over a month= 80g).  However in December I had a massive increase in symptoms, and although it could have been coincidence (fostering-related stress, being run down and having a cold virus etc) I was really worried that I was relapsing.  So my lovely neuro specialist nurse increased my dose to 12g twice a week, which I know doesn’t sound like much of an increase but that equals 96g of immunoglobulins across the month, which is an extra 16g on top of what I was getting before, and already just two months in to the new prescription I am seeing results from that- with an increase in energy and a reduction in nerve pain, tremors and jerks (all good things!)

There are downsides of course, like there are with everything.  Instead of someone else jabbing a needle in my arm or hand once a month, I am stabbing  four tiny needles into my belly with every infusion- so stabbing myself 32 times a month.  But there are people on insulin and other medications jabbing needles into themselves every day, so I try to keep it in perspective.  Also, being the one in control of when the needle hits, and having an abundance of flesh to choose from (haha…boohoo) is preferable to someone else rooting around in the crook of my elbow for a viable vein.

We’ve had to find ways to store my medication and all the associated STUFF that comes with it (and there’s quite a lot).

stockingup

I get a delivery once every 12 weeks and it takes me maybe an hour to unpack and check that and put it all away, making sure to rotate the remaining stock so that I don’t end up with out of date human immunoglobulins stuffed at the back of a drawer.  I had some issues in the summer with not being able to keep the room cool enough (Hizentra needs to be stored at room temperature) but a fridge thermometer and a fan have helped, along with moving the drawers that my medication is house in, into a shadier area (as in out of the sun, not further along the A6).

Some nights when I realise I need to do my infusion, which takes about two hours from start to finish, I just feel like I would rather do anything else on earth.  That proper petulant child part of myself that I rarely allow to the surface comes stomping out, and I just want to fling myself on the sofa and say I CAN’T BE BOTHERED and possibly even whine WHY ME?  But I always shake myself mentally and remind myself that back in the early days of my diagnosis, this is what I dreamed of.  Seriously, to be almost symptom-free most days and doing my own treatment in my own home at a time that suits me (usually in the evening, watching TV in bed) that seemed like a FANTASY.  Now it’s my reality, and it’s easy to slip into taking that for granted and seeing only the negatives (it stings, it’s time consuming, I would rather be doing x, y, z etc) rather than the positives (it works, it has almost no negative side effects and it’s goddam FREE on the NHS).

eveningplans

So overall- my first year on SCIg?  It has been life-changing, and I say that without hyperbole (for a change).  I feel so lucky.  And no, I don’t always manage to hold that feeling, when one of my infusion sites blows and I have what is essentially a mix of thousands of other people’s sticky immunoglobulins seeping out of my belly and all over my clothes and/or bed sheets then yes I think “FML” because I’m only human.  But the majority of the time, I feel incredibly blessed and grateful because I know how fortunate I am to have this treatment freely available and that it works so well.  So well that there will probably even be people reading this who had no idea I even need it 😉

So here’s to a year of FREEDOM, and if not good health then at least well-managed illness, and may there be many more!*

(*Providing the tories don’t dismantle the NHS that is…but that is a separate blog post ENTIRELY)

The Trial

Back in August when I wrote “One Year On”– a blog post marking the 12 months since my first hospital admission for (what we now know to be) CIDP, I mentioned a clinical trial I was possibly going on.

Back then, it was just a pie-in-the-sky “this maybe might happen at some point” kinda thing, but last week I finally got The Call from a research nurse, to let me know that they were now recruiting patients and to ask if I was still interested (the answer to that being a definite YES!)

See, the trial is to see if CIDP can be successfully treated with subcutaneous immunoglobulins (SCIG) at home, rather than intravenous immunoglobulins (IVIG) at hospital.  The idea of being able to administer my own medication in my own home sounds so good that ever since my consultant mentioned the possibility last summer I’ve been dreaming of the day when it could be a reality.  So when the research nurse asked if she could send me some more information about the trial itself, I was delighted.

Unfortunately, that was where my elation ended.  As when the information itself arrived, my happy-feelings quickly went away.  The trial itself is lengthly, in fact it’s really of an undetermined length as there are three phases and the first two are entirely dependant on you as a participant, or rather- your body/condition.  The final stage being a set 3 months.

There’s a lot to it (obviously, as it’s a clinical trial!) but I’ll try breaking it down very simply.  Basically first up, they need to be sure you are actually reliant on immunoglobulins as a form of treatment, so they take you off them (eeeeeeeeeeeeeeek!) and then when it turns out that you really do need it, they re-stabilise you, but rather than with your usual product/dose/infusion, it’s with the SCIG, and then, when you’re stabilised (however long that takes) they assign you to one of three groups, either low dose SCIG, high dose SCIG, or a placebo (eeeeeeeeeeeek!) and then after three months it’s game over and you’re back on your usual IVIG in the hospital.

Now some of that, I already knew.  My consultant had pre-warned me that they would need to be certain the participants actually NEEDED the immunoglobulins, so I figured there’d be a period where I’d be required to go without, and I also knew that I’d need to have some of my investigations repeated, like the electric shock torture, I mean, err…Nerve Conduction Testing…so some of it wasn’t a surprise, but a lot of it was, and not in a good way.  There was a lot to read through, and it laid it all out bare how many extra hospital visits it would require and how much upheaval and disruption it would potentially cause, and by the end of my first read through I was already thinking:

NOPE.

I feel so guilty in a way as I think it’s a fantastic study, and the results could have amazing implications for the future treatment of others with my condition, but I just can’t justify turning my life (and the lives of Chris, and the boys, and potentially a foster child!) upside down to take part in something with so much uncertainty when it’s going to have such a big impact.

So I went to see my neuro specialist nurse yesterday as I had a routine review appointment with her anyway, and the research nurse was with her, and I was just very honest with both of them about how despite my initial enthusiasm, I’d changed my mind, and they were both very understanding and generally lovely and made sure I knew that I was under absolutely no pressure whatsoever to take part.

My actual review went well- my scores are higher than they were in the summer, which is apparently unusual as generally us CIDP sufferers are worse in the winter (I do find I have more nerve pain and tremors, at the minute but I’m nowhere near as lethargic as I was in the hot weather, so…?) and then the topic turned to my treatment and what to do moving forward.  I still get a dip at the end of each month, it’s not as bad as it used to be, but there are still those last few days before my next infusion where I’m a bit shaky, a bit weak, generally lethargic, and well…a bit naff all round.  So the question was- can my dose be increased?  The answer being yeeees, but a tentative yes, because I’m already on 80g of privigen, so the next logical step would be 90g or even 100g, but those kinds of doses can’t be given over one day, so I’d be back to where I was at the start of last year when I had to spend two consecutive days each month at the hospital (not ideal, obviously).

In the end, my lovely specialist nurse called in my equally lovely consultant who’s answer was: “SCIG”

Which, I’ve got to say, confused us all, as the three of us all assumed he was talking about the trial.

“No, I mean, just SCIG”  he said.

Turns out, aside from the trial, a small number of patients are being started on SCIG at home already, as the small amount of research there is (mainly from other countries at this stage) is showing- it works, and is better for everyone involved.  So he wanted to know- did I still fancy it?  Without all the hoops of the trial to jump through, just- get trained up, and get going with it, doing it myself at home?  Errr….YES!!!!!!!!!!!!!!!

So that’s what’s going to happen.  I don’t know when yet, but I do know it will likely be quite soon, which is super exciting.

I know I’ve said this before, both here on the blog, and over on facebook, and probably on twitter, and definitely in real life too, but I’ve got to say it again: I really am SO lucky, to have been diagnosed so quickly, to have found a treatment that works so well for me, and to have such a fantastic team of professionals taking care of me.  It’s days like yesterday that really hammer that home for me- I go into an appointment feeling anxious, and come out feeling reassured and really positive about the future.

 

JanuaryIVIG

(That’s me having my infusion 2 weeks ago, it was about 3 hours late due to the ward being busy- something that won’t be a problem when I’m doing it myself- yay!!)

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 😉

 

10 People You Meet At The Swimming Baths

As mentioned previously, I recently started swimming again, partly in an attempt to lose some of the 2 stone I’ve gained since being ill, but mostly just because it’s a thing I used to do that I enjoy, and I missed it.
It’s all going really well- I’ve built up from being able to do 17 lengths to 30 (and last week I managed 40 as a one off! Not that I’m showing off, you understand.) I’ve been going at least once a week, often more, and it’s all good…there’s just one teensy tiny (extremely irritating) problem…the other pool users.
I was going to say “fellow swimmers” but that wouldn’t be an accurate description…at all.
So here’s a list of the ten different kinds of people you are likely to come across at my local baths.
1. Splashy Mc Splashersome
Usually wearing speedos, goggles and a swim hat, Splashy McSplashersome takes his/her swimming very seriously indeed. To watch them furiously attacking the water with their dramatic take on front crawl, you’d be forgiven for thinking that you’d accidentally found yourself in the middle of the Olympic Finals, rather than, say your 100-year old local pool on an average Wednesday evening.
Splashy McSplashersome has no spatial awareness. So in an otherwise empty pool will always choose to swim right beside you. If you feel something brush against your leg try not to freak the fuck out. It is, after all, unlikely to be a sea creature…it’s probably just one of Splashy McSplasherome’s limbs as they propel past you, oblivious to the fact that PERSONAL BUBBLES STILL APPLY UNDERWATER FUCKWIT! In fact, even more so since you’re pretty much naked. *shudder*
2. Stinky Person
If it’s not an over-abundance of aftershave making you feel like you’re swimming in a vat of old spice, then it’s cigarettes. How many fags does a person have to be smoking a day in order to actually cause chlorinated water to take on the smell of cigarettes the second they get in? I don’t know. I’m going to guess *a lot*
3. Other People’s Kids
Let’s face it: all children can at times be irritating self-centred assholes. Putting them in a body of water without parental supervision, unsurprisingly does not help.
If you’re sat there shaking your head in disbelief thinking “Not my children” then chances are, yes your children. The only reason you can’t see it is because EVOLUTION. It’d be no good if we all went round drowning our young, would it? Other people’s young though…well now, I can make no promises…
4. Some 90 Year Old Man or Woman Who Can Swim A Lot Better Than You
There’s always one.  And they’re always overtaking you.
5. Show-Off Guy
Diving in, swimming ridiculously fast drowning everyone in his wake, doing pull-ups on the side of the pool…I’m never sure who show-off guy is trying to impress…the lifeguards? (What, are you five?!) Other swimmers? Me? Because the only way you could impress me if we’re sharing a pool is to stay the fuck out of my way.
6. Grunting Guy
Sometimes interchangeable with show-off guy. Here’s a man who needs everyone to know just how hard he’s working. It’s not enough that he’s swum ten laps in ten minutes, he has to spend at least twice that hanging out in the deep end, splashing his face with water and making grunting noises to demonstrate his exertion. Most off-putting.
7. The Non-Swimmer
Leaning on the side, wearing full make-up, including freshly applied lipstick and eyeliner, discussing the sordid details of their love life with a friend who just happened to be passing through on their way into the gym, these folk never actually get round to doing any swimming.  Some people just like to chill out in the water I guess?  Although, if that’s the case why the fuck they don’t just stay home and take a bath, I have no idea.
8. The In and Outers
They’re swimming. They’re getting out. They’re in the shower. They disappear into the sauna for a bit. They’re diving back in. They’re swimming. They’re climbing out again…rinse and repeat (literally) x about five. What the hell?! I don’t get it at all.
9. The Unaware-Of-Public-Shower-Etiquette-Guy
Pulling their shorts away from their body to give their privates a good rinse? Check.
Lathering up their inner thighs? Check.
Catching water in their mouth and spitting it out? Check.
I don’t know why some of them don’t just bring their loofahs, toothbrushes and razors and be done with it.
10. Some Grumpy Bitch Scowling at Everyone who Gets in Her Way Whilst Doing Breaststroke for An Hour
Oh…that’s me…
(*Sigh* What I wouldn’t give…)

The Yoga Ogre

A few months ago my boys’ brought home this book from a birthday party:
Not only is that such a brilliant idea (books instead of party bags, I mean), but the book itself is hilarious.
Basically Ogden (the protagonist) is an ogre on a mission to get fit, and as I read it I couldn’t help but notice a few similarities between him and me.  Particularly his inability to understand how his pyjamas suddenly didn’t fit, despite his over indulgence in pie.
The similarities became even more striking this week when, on Monday I went to my first ever yoga class.
Thankfully, (*spoiler alert!*) I managed not to cause any damage to the structural integrity of the building, unfortunately however, I do appear to have caused some significant damage to myself.
 
I didn’t even feel like I was particularly pushing or straining myself, and was quite accepting of the fact that there were limitations (many & varied) to my flexibility and what I was capable of. The class was 90 minutes, and afterwards I came home feeling tired but relaxed.
The following morning however I felt like shit.
Or more specifically, like someone had run over me with an eighteen-wheeler, and inserted barbed wire into my skull.
I continued to feel like this particular brand of shit all day on Tuesday, and after doing nothing other than take the kids food shopping, I ended up having to go back to bed at 3pm, something I haven’t had to do in a really looooong time.  This was only accomplishable because I bribed the children with The Little Mermaid on DVD and snacks, to get them to sit still and quiet in my bed.
Yesterday I didn’t feel quite as bad initially, but then as soon as I tried to walk almost instantly felt like it was a Very Bad Idea and that I might pass out in the street (fortunately I didn’t).
Today my head feels clear but my back and neck are still killing me. Leading me to wonder if Tuesday and Wednesday were the result of a burgeoning migraine nipped in the bud, rather than the yoga, (which I assume is what these lingering aches and pains are a hangover from).
Alternatively this could all be some random CIDP related horseshit but that seems unlikely only 10 days in to my IVIG cycle.
Either way I am going to have to decide whether to try again next Monday.
At this point I’m thinking it could be kill or cure…