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.

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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).

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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).

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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)

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One year on

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

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

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

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

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

 Life with CIDP

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

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

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

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

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

 

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

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

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

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

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

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

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

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

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

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

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

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

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

 

Happy Monday!

Some days I feel like I’m in my own twisted version of The Truman Show. You know, where everything you touch turns to shit and you can’t help but wonder if there’s some underlying conspiracy to drive you to the brink of insanity?
Today is not one of those days. Today is the opposite of one of those days.
First up, Chris went for his first ever driving lesson. That probably sounds like no big deal. Except that it’s a huge super massive deal.
When we discovered I was pregnant with Toby (on the 13th March 2009) I told him “You need to learn to drive before this baby is born!” and again when I found out I was pregnant with Rudy on the 12th February 2011, I said the same thing. Those embryos are now 4 and 2 years old respectively and until this morning Chris had yet to actually get behind the wheel!
After his lesson (which was apparently a great success, and certainly the Audi appeared intact on his return) I had to get bloods done as part of my molar pregnancy follow up. I figured it was going to be a huge pain in the arse as the specialist centre I’m under send all the specimen bottles and request forms etc direct to me and if there’s one thing us HCP’s hate, it’s patients’ who have more of a clue what’s going on than we do 😉 But in fact I got called through right on time, presented my blood bottle and paperwork and it was done and dusted within a couple of minutes. In fact, because I am driving again these days, the whole experience from leaving my house to walking back through the front door took exactly 20 minutes. There was even a parking space in the GP surgery car park! There is never a parking space in the GP surgery car park! (That was my first clue toward the reverse Truman show effect).
Then our lovely friends Emma and Ben came to collect the boys to take them on an exciting trip to the Sealife Centre and for a sleepover! Faced with the prospect of 24 hours child free in which to do whatever we pleased (so…that’ll be 24 hours of uninterrupted sleep then 😉 ) whilst our boys had a whale of a time (excuse the pun!) I really didn’t see how the day could get much better.
Then a letter from my consultant dropped through the letterbox.
It begins:
Well that got my attention. This guy could definitely write novels, he’s certainly got that “hook them from the first line then reel them in” quality.
He goes on to say that given how negatively I reacted to my recent trial of steroids he believes he is justified in allowing me 5-6 months of IVIG treatment before considering other options.
That means not starting prednisolone this week and waiting 2 months to see how I react to it. It means that for the first half of 2014 my CIDP will be managed and I will be able to lead some semblance of a ‘normal’ life and take a break from hospital admissions and trialling medications and their side effects. It is, in short, very good news. Which, as a family, we haven’t had much of recently.
So since today appears to be going so well, and since our children are safe and happy at Mermaid Cottage I think the only right and proper thing to do is to go out and celebrate…just as soon as I finish this blog post…and take a long hot bubble bath…and have a disco nap…

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.

A funny thing happened (Part 1)

Funny odd, not funny haha. It wasn’t the least bit amusing I assure you.

So just over 5 weeks ago I woke up one morning and my left leg felt like it had gone ‘dead’. You know, like I was awake but it was still asleep? Well, I just figured I’d slept on it funny or something and got on with my day.  I noticed it was slightly weaker than usual, as though I didn’t have as much strength in my calf muscle as normal but I still managed to get on with life without it being too much of a bother. That night I noticed I had pins and needles in my toes and heel and that the sole of my foot felt numb, I guessed it was related to the weakness in some way but still wasn’t sure what was going on and although the buzzing sensation made it hard to sleep, other than that life carried on as normal for a few days. When it started to get worse rather than better, and I was walking with a limp and finding stairs difficult, I went to see a doctor. A locum at my GP practice diagnosed me with “sciatica” and sent me away with an instruction to exercise more and a prescription for some ibuprofen gel (which I didn’t bother to fill, since I had no pain or inflammation at all).

Almost immediately after that the weakness began in both my arms as well, accompanied by pins and needles in my fingers.  It was subtle at first, I noticed pushing the buggy was harder than normal, I struggled in confusion when lifting the kids in and out of their car seats.  One evening I decided to bath rather than shower and couldn’t lift a jug of water to rinse my hair, I came downstairs and complained to Chris that I was feeling weak and pathetic and he had to comb my hair for me because I didn’t have the strength to do it. I knew something wasn’t right but it wasn’t until I went to work 2 nights later that I realised how bad things had got. Once there, I realised that at home I had been adapting my every day tasks to accommodate my weakness but at work I couldn’t do that.  I struggled to open medicine bottles or tear open packets of IV fluids, I bent down to sort out an IV pump and couldn’t get back up again without grabbing on to the desk to heave myself up. My hands shook and hummed and buzzed almost constantly.  It was a busy shift with 2 admissions and I barely sat down all night. When I drove home that morning I kept missing my gears, and my left leg had a tremor so bad I had to put the hand brake on every time I paused for even a minute as I couldn’t keep it still on the clutch. On a couple of occasions I came close to crashing and for the first time, since my problems had started a fortnight before I actually felt unsafe to be behind the wheel of a car. I got home and collapsed, literally in to a chair, and felt like I would never be able to move again.

Chris suggested I go to A&E or at the very least make an emergency GP appointment, but I didn’t want to see another locum, and anyway I was adamant I had to be back at work for my 2nd shift that night so I struggled up the stairs to bed where I sat and cried, wondering what the hell was wrong with me.

I called my GP surgery and said that I understood there wouldn’t be any appointments left for that day but asked if it would be possible to at least speak to a Dr on the phone, the receptionist said that my GP would call me back at 11am. She then rang back almost immediately after I hung up to say that actually, if I could get to the surgery for 11am she would in fact see me.

My boys joined me in bed for a cuddle. I was exhausted but wired, and literally buzzing so didn’t think I’d be able to sleep. Toby offered to sing me a lullaby. Chris told me later that by the time he’d finished his rendition of “Jack and Jill” I was out like a light.

At 11am as promised I was called through to my Dr’s room, I sat down on the chair by her desk and she said “What can I do for you?” to which I burst into tears and through hiccuping sobs explained what had been going on. I should explain that my GP is brilliant and when I’d finished she simply said “That’s not right. This needs investigating” After performing a few examinations and establishing I did indeed have a significant weakness, particularly in my arms she rang the medical consultant on call at MRI and arranged for me to be seen and then sent me with a letter to A&E where the next stage of my saga began.

And as this is becoming somewhat epic and I am increasingly struggling to type I’ll have to leave it there…

Stay tuned for part 2!