Let me introduce myself : – My name is Janine, otherwise known as Beth’s mum!
We all live together (myself, Beth, Beth’s brother, Jake, and our two little kitties Doc and Luna) in our home in Stockport, Cheshire, UK.
As I am Beth’s sole carer when she is poorly and as Beth remembers very little from when she is in episode, we thought it might be good to both share this blog so I can add a different perspective, that of someone who cares for and loves the sufferer and has lived this illness alongside her, every step of the way.
I will also be able to fill you in on how Beth is doing when she is unable to do so herself.
So where do I start? Maybe a good place to begin is at the beginning…
Beth was 16 years old and had left school that summer with a very good set of GCSE’s. She had a new boyfriend and after enrolling at the local 6th form college had settled in and was studying for 4 A levels, with every hope and intention of going on to uni afterwards to study for a degree. She had fully immersed herself in college life, studying hard, enjoying extracurricular activities and making lots of lovely, new friends. To the outside world she was a ‘normal’, pretty, smiley, bright and fun loving, everyday sort of girl. To me she was my beautiful, sunshiney, clever, compassionate, funny and ever so slightly bonkers bundle of energy. Though she did have her moments! I had learnt quite quickly, and from an early age, that the best way to get her to do anything I wanted her to do was to tell her to do the opposite! Her stubbornness was, and still is, legendary! And if I was given a penny for every time the words Jonas Brothers or Zac Efron crossed her lips at that age, I’d be pretty damn rich by now! Pretty much the average kid I’d say!! She was my gorgeous girl, with the world at her feet!
And then it happened!
Beth developed tonsillitis. We took the regular course of action, went to the GP, she was given antibiotics, took the medication (and plenty of ice cream and soup) and after about a week she seemed fully recovered and returned to college. From there on in things started to change. She would go to college complaining of how exhausted she was and return in an even more exhausted state. No amount of early nights would make her feel any more rested. She would sit down to begin her homework and be unable to focus on it. “I just need a little nap before I do anything. I can’t even think without a sleep” she would say to me when she got in. But even after having a nap she struggled. She just didn’t have the energy or focus to do anything other than exist.
I recall an incident where, after a week or so or this, I became completely frustrated with her, wondering what was happening, wondering if she just wasn’t ‘trying’. “Beth”, I exclaimed after yet another request for sleep, “sometimes, people just have to work through their tiredness and just try and get on with it”. I regret this statement now. It was made from a place of frustration and lack of understanding as to what was happening with her and it accomplished nothing other than to upset her. The way she was feeling and acting, we now know, was not a choice for her, she couldn’t just rally herself on, she was ill.
And then, after a couple of weeks, something changed. She fell asleep on the sofa for longer than normal and when I tried to wake her I couldn’t. When I eventually got some sort of response she was muttering incoherently, making no sense at all. Her voice seemed to have changed, sounding almost childlike and all I could get out of her was she was freezing cold and just wanted to sleep. It was when she began hallucinating that spiders where crawling on her that I knew something was really amiss. I was terrified. Next stop, A and E!
I won’t go into every detail of what happened next as there is so much to say that I will be writing forever. But here’s a brief overview.
It took presenting Beth at A and E five times before she was eventually admitted. Original diagnosis’ were :- she had a high temperature (she didn’t) causing her to be delirious, she had a virus (she didn’t) and other equally ridiculous things. In the end I insisted they admit her. I knew there was something seriously wrong but felt that no one was listening. But after admitting her and seeing for themselves the state she was in the cogs quickly started turning. She was transferred from our local general hospital to the local specialist neurological hospital . I remember the transfer journey well, as on her notes that were given to the ambulance team were the words ‘encephalitis’. It was the first time this diagnosis had been mentioned. My emotions were all over the place, everything from relief at going to a specialist hospital to fear and heartbreak, not knowing what was happening to my beautiful daughter and what the outcome would be. But hold it together I had to.
She was in Hope Hospital for almost a month undergoing a battery of tests. I lived by her bed side, day and night. She had CT’s, MRI’s, countless bloods, EEG’s, ECG’s, and the dreaded lumbar puncture, of which she had two. Each time I hoped that nothing would show up on them, hoped against hope that nothing was wrong. But equally I hoped something would show up. That sounds awful, I know, I didn’t want there to be anything wrong with Beth, far from it, but there WAS something wrong and we just needed it to show its face and show up in a test so that we could get on with diagnosing her, treating her and making her better.
But this was not to be.
All the tests came back negative (as they do with this illness) apart from a slight slowing on her EEG. We, and the doctors, were flummoxed. She was clearly ill but with what? A virus they said. Go home. It will pass. So we did and it didn’t!
Two months later, still poorly, in deeper than ever, she was readmitted. All the tests had been done, nothing was showing, yet she was still in this strange, cognitively impaired, confused, childlike state, sleeping and eating her life away. A shell of her former self. The doctors had no answers. So the doctors did what many doctors do when presented with an illness they are ignorant of. It must be psychological they said. Don’t get me wrong, I am open to anything of a psychological or mental nature, In fact at that stage I was open to just about any answer. I am not of the ilk where I think those type of illnesses are shameful. They are just as powerful as any organic illness and have equally devastating effects on the patient’s life. However, I knew from having cared for my child and lived with this illness for months that this was not the case, that this was a physical illness.
To be honest and fair though, this misguided interpretation, was a blessing in disguise. Beth was sent to see a neuro-physchiatrist who I’m thankful to say recognised her symptoms and diagnosed her with a rare neurological illness called Kleine-Levin Syndrome (KLS). We know we are very lucky for Beth to receive such a quick diagnosis (4 months) as the average time for someone to get diagnosed with this illness is 4 years!! Usually after many misdiagnoses and many ‘it’s all in your head, try setting your alarm clock ‘type of medical opinions. We hadn’t finished with our fair share of those ignorant opinions just yet (we have heard many since) but for now we had a name. Kleine-Levin Syndrome. A name wouldn’t make her better, wouldn’t change the impact this was having on her life. But at least it was a name for this horrible illness. A name for what was happening to Beth. A name we could research and educate ourselves and others about and learn how better to live with and manage this life changing illness.
And the rest, as they say, is history…