Real Life Stories – Rebecca Laura
Posted by Rebecca Taylor on July 5, 2021
I had my first fall at the age of 28 – but I was young, a mum, a neonatal nurse, I’d run my first 10k earlier that year, I was fit and healthy… wasn’t I? The tale of how I was diagnosed with – Chronic Inflammatory Demyelinating Polyneuropathy (CIDP).
Falls are something typically associated with older age and as I was a nurse myself, something I was accustomed to thinking of as a problem exclusively affecting the elderly or sick patients in hospital – I was wrong!
It all started on a night shift. I was checking some medication with a colleague and felt a tiny ‘zap’ in my calf muscle, as though I’d been bitten by an insect or had the tiniest of electric shocks. I slapped a hand to my leg and my colleague joked that I might have fleas. I laughed it off. Later that night, I was walking along the corridor and another colleague walking behind me commented that I seemed to be limping, and asked if I’d injured myself. I told her no but that my leg did feel ‘funny’ as though it had gone to sleep.
That was May 2013 and like any good nurse, I ignored my symptoms. We’re truly the worst of patients and I managed to simultaneously convince myself it was ‘nothing to worry about’ whilst secretly worrying it was something very serious indeed that I wasn’t ready to face. Right up until I had to.
At the start of August, I woke up one morning feeling as though my leg had gone completely dead. I made an appointment with a locum GP and was told I had sciatica. I was unconvinced but keen to believe it was something so simple.
My last ever shift as a nurse was August 22nd 2013. By then, on top of the random ‘electric shocks’, I’d started to experience tremors in my hands, and significant weakness in my legs and arms. I could no longer carry my two young children out of their car seats, brush my long hair, lift a full kettle or get up from our low sofa.
At home, I’d unknowingly begun to adapt my daily life to fit around what I could no longer do, but at work that night, the reality of my situation hit hard. It quickly became apparent I was in no fit state to do my job. Writing in medical notes, my hands shook and my words became indecipherable on the page. I couldn’t tear open the plastic packaging on a bag of IV fluids, much to the amusement of my colleagues who thought I was kidding around. At one point I squatted down to read the numbers on a monitor beside an incubator and realised I couldn’t stand without using the edge of the nursing station as leverage to heave myself back up.
Despite having been awake all night, I knew I had to see someone. My usual GP agreed to squeeze me in for an emergency appointment at 11 am so after a brief power nap I hobbled into the surgery and explained, through tears, what was happening. She sent me directly to the hospital with a letter requesting an urgent MRI scan.
My nursing background told me that I was dealing with something serious and almost certainly neurological but denial is an incredibly powerful thing. A small part of me clung to the hope that I simply had a trapped nerve in my back and that my life would soon resume its normal course – the one where I was the nurse helping others navigate scary situations and not the patient lying on a bed, fearing the worst.
My MRI results ruled out several possibilities, such as Multiple Sclerosis, but unfortunately didn’t provide answers about what was wrong with me. It was only a week later, after a neurological examination and a lumbar puncture that I was given an official diagnosis of Guillain Barre Syndrome, a rare neurological condition whereby a person’s immune system starts attacking their nervous system, leading to symptoms like those I’d been experiencing.
No one knows why Guillain Barre develops but it’s thought that for reasons no one fully understands, when a person catches a run-of-the-mill virus, their immune system can become confused and mistake their nervous system for the enemy and begin attacking it instead. I was asked if I had been ill just prior to my symptoms developing. I had a three year old and one year old and worked in a hospital, of course I’d been ill. I recounted the sore throat we’d all had a couple of weeks beforehand, the chicken pox both my children had been struck down with the month prior, and the tummy bug that had run rampant through my son’s nursery not long before that. The doctors told me it could have been any one of those things that started the catastrophic chain of events in my body – or none of them. No one could say for sure.
I wasn’t a textbook case, however. Usually Guillain Barre Syndrome has a rapid onset and people tend to go from fully mobile to entirely paralysed and needing support to breathe within a short space of time such as days or weeks. Yet there I was, still limping about the place, breathing unaided several months after my symptoms had first presented.
Still, the neurologist who examined me felt that it was more than likely I was over the worst of it and that even without any treatment I should start to see improvements in my condition and mobility during the coming weeks and that eventually I would get ‘back to normal.’ I was discharged home, where I spent the following month waiting for some sign of improvement and growing increasingly frustrated at my new disability.
I’d always been very active and fiercely independent. I went to work, took care of my children, did my own housework, drove a car, and I enjoyed running and swimming. But there I was, off sick from my job, not safe behind the wheel of a car, unable to dress myself or even walk across a room safely. People told me to be patient but confined to my bed or the sofa, minutes felt like hours, hours like days and every day that passed slowly by, brought no sign of improvement.
Gradually, over the coming weeks, I deteriorated further and after several nasty falls, including one attempting to navigate the steep, narrow stairs in our terraced house, I had to admit defeat and I was readmitted to hospital. By this point it was October. My neurology team maintained the diagnosis of Guillain Barre but mentioned, for the first time, another possibility: CIDP or Chronic Inflammatory Demyelinating Polyneuropathy. An absolute mouthful of a condition that simply describes the chronic version of Guillain Barre. Chronic meaning long-term i.e. it wasn’t going to go away. Either way, it was decided I should be treated with IV Immunoglobulins (IVIg).
IVIg is a blood product – a medication compiled from the immunoglobulins of 1,000 blood donors in a single bottle. The idea being that pumping someone else’s immunoglobulins into my body would dampen my own immune response, i.e. the healthy immune systems of the donors would prevent my own, badly-behaved immune system from attacking my nervous system and stop the nerve damage that was continually happening.
The day I had my first dose of IVIg, I had another fall. I was on a hospital ward, being assisted to move from the toilet to a standing position. The two healthcare support workers that had answered my call buzzer were each about a foot shorter than me and probably weighed about half as much as me combined. I asked if they were sure that they’d be able to take my weight until I got upright and they assured me they could but as it turns out, they couldn’t and dropped me on the floor.
There’s nothing quite as sobering as finding yourself sitting on the floor of a hospital bathroom with your pyjamas around your ankles unable to move and entirely at the mercy of others. The aghast support workers apologised profusely and began discussing hoists. Meanwhile the nurse on duty, a 6 foot 4 inch sturdy looking young lad, not long out of training, asked through the closed door if I’d mind him coming in to help. Foregoing all correct moving and handling technique he had me on my feet in seconds and I was soon safely back in my hospital bed where I tried to explain just how absurd it felt to be someone who had run a 10k race a few months before and now couldn’t get off the toilet safely.
That was the Friday evening. The following morning, after just one dose of IVIg I safely stood up from the toilet on my own using handrails. By Sunday, after another dose I could shower myself. On Monday, with help from two lovely physiotherapists, I was able to walk with two crutches and within 24 hours of my final dose of IVIg I was walking steadily with one crutch. It felt like nothing short of a miracle.
I was discharged from hospital and considered myself to have had a lucky escape from the drastically-altered future I’d begun to envisage – and fear – would become my reality. But by the time my follow-up appointment in outpatients rolled around in November, I was back up to two crutches and had started to gradually deteriorate again.
I was admitted again – this time to a hospital with a specialist neurological department and my care was transferred to a new neurologist with a special interest in CIDP. Following another lumbar puncture and the results of nerve conduction studies, my diagnosis was officially changed to one of CIDP and I was given another five day course of IVIg which again worked wonders.
I was briefly prescribed strong steroids to see if they could knock my CIDP into remission but not only did they do nothing for symptoms – they actually gave me new ones to contend with! Eventually, after another emergency hospital admission in January of 2014, I was approved for regular IVIg treatment.
For the next year, I would travel to the hospital once a month for IVIg. Initially, this took two full days but over time I was able to tolerate having the IVIg pumped through quicker and so got my hospital stay down to just one day. I’d turn up around 8 am and spend the day there- until around 5 pm before heading home. It wasn’t always convenient but it seemed a small price to pay to be able to stay independent and mobile the rest of the month.
In 2015, I was offered the chance to try self-administering my treatment at home and jumped at the opportunity. Instead of having immunoglobulins as an intravenous infusion (through a needle in a vein) once a month at the hospital, I would be able to give myself a lower dose, twice a week at home through subcutaneous needles instead. These tiny needles would sit in my fatty tissue and release the immunoglobulins slowly into my system. Early clinical trials were showing that subcutaneous immunoglobulin treatment (SCIg) was just as effective as IVIg in patients like me.
So after undergoing training in how to self-administer the SCIg, I took my first delivery of medication and needles and began giving myself twice weekly immunoglobulin infusions at home. Like anything new, stabbing yourself in the tummy with needles took some getting used to! But my background as a nurse helped and I felt incredibly grateful to have a treatment that not only worked but that I could fit around my life rather than vice versa.
That was 6 years ago and aside from 15 months where I went into remission and was able to come off treatment entirely, I’ve been on SCIg ever since. I sometimes complain and of course at times wish I didn’t have to do it but the truth is, despite my occasional grumbles, I’m still so thankful that it’s even an option. Immunoglobulins are expensive and without the NHS there’s no way I’d be able to fund my treatment. Plus, there’s currently a global shortage of immunoglobulin (it’s thought that it may be due to Covid-19 affecting blood donations) so my future on SCIg is never guaranteed.
Not everyone who has CIDP responds to immunoglobulin treatment or responds as well as I do. Everyone’s experiences are slightly different and although there are commonalities in our symptoms, the severity of the illness varies massively. I’ve met people with CIDP whose lives have only been mildly affected and others whose worlds have been turned upside down. Some people have to wait years for a diagnosis or are initially misdiagnosed and delays in starting treatment mean irreversible nerve damage may have taken place in the meantime.
Currently, my form of CIDP is ‘relapsing remitting’ meaning that yes, I’m stuck with it but that I could potentially have periods of time with no symptoms, known as being in remission. Again, no one quite knows why or how this happens but there are some factors that are commonly acknowledged. Women with CIDP who become pregnant tend to find they have fewer symptoms during pregnancy. On the other hand, exposure to viruses like the flu, for example, can trigger an immune response and cause relapses for those with CIDP in remission.
In the 8 years since my diagnosis I’ve had one period of remission where I was able to come off my SCIg and a handful of relapses where I’ve needed my dose increasing. Since being on it, however, I haven’t (touch wood!) required hospital admission for my CIDP and I’ve been fortunate enough to lead a relatively ‘normal’ life.
One thing I did have to leave behind was my nursing career. Busy, stressful shift work where I had literal lives in my hands, was not something I could contemplate returning to after my diagnosis. I had two very young children and caring for them alongside adapting to life with a chronic illness left no room for such a demanding career. It was hard to walk away from something that had been my life for almost a decade but I knew it was the right decision. A couple of years after my diagnosis I did go back to work part-time and began to build a new career for myself, initially working in public libraries and more recently, as a writer.
I also took part in the Great Manchester Run again, albeit walking rather than running but I still raised much-needed funds for GAIN, a charity that helps those diagnosed with Guillain Barre and CIDP.
There are some things I struggle with on a day-to-day basis but I’m more accepting of them now than when I was newly diagnosed. I’m very stubborn and it took me a long time to accept that needing help doesn’t make me a lesser person. Some days, I still struggle with it, if I’m honest! But I’m better than I was. I no longer walk with a crutch but if I need to again in the future I think I’ll be less shy about it. I no longer see adaptations as something to be embarrassed about but something to be grateful for. And, for the longest time, I didn’t want to admit that I needed any special treatment or aids to do everyday things. Then I visited a friend’s house who had a toilet seat raiser with handles and I was struck instantly by how much easier my everyday life would have been if I’d accepted my CIDP and limited mobility sooner instead of railing against it.
Being diagnosed with a long-term health condition is life-changing at any age but I think society feeds us a narrative that ill health, or reduced mobility is not something that happens to young, healthy people and as much as we might want to believe that, it simply isn’t true. What happened to me, can happen to anyone, though I admit that statistically, my specific condition is unlikely! Only around 3 people in every 1,000,000 are diagnosed with CIDP in a year. Most people I speak to have never heard of it, and really, why should they? I was a nurse and I hadn’t even heard of it until it happened to me!
That can make the diagnosis quite a lonely experience, however, as you feel as though you’re the only person on earth this is happening to. That’s one of the reasons I think it’s so important that I talk about my experience – to raise awareness of conditions like mine, which have such a huge impact on the lives of those living with them but aren’t as commonly talked about or portrayed in the media. If I can help just one person newly diagnosed with CIDP to feel less alone or more positive about the future, then to me, that’s worth it.