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 Shocks, The 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.
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.
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 😉