Regular readers will know that this blog is my happy place. I love to share with you all the positive things, large and small, that bring us joy. When I share our challenging times, again, I always aim to focus on the positives and share what has worked for us in case you might like to try that too. Blogging gives me a constant appreciation for those around me, and for the life I’m blessed to be living.
Today’s blog post is unusual in that I’m sharing the details of a very personal challenge. I’m sharing the story of how I got very ill, how I got through it and how I ultimately recovered and found positives in a truly frightening experience. It’s been three months and I’m ready to share. This is my viral meningitis story.
In October 2016, I flew out on a press trip on an overnight flight, so thought little of the headache that plagued me over the next few days.
I remember feeling more tired than I expected, and remarking to my companions that it was odd that paracetamol wouldn’t shift the pain behind my eye, but again, I dismissed it as a combination of jet lag and eye strain – live posting is a key activity on press trips so you stare at your phone a LOT.
On Sunday evening, I arrived home. I was understandably shattered after a seven hour flight, so enjoyed much needed hugs with my husband and kids and crawled into bed. Monday, I awoke feeling fine, and cracked on with a day of work, while Mark took the kids out. The plan was that I would clear my inbox – things get pretty crazy when you’re abroad for a few days – and then I’d have the kids for the next chunk of the half term holiday week while Mark worked, then we’d all have the weekend together.
What actually happened was quite different.
I was sitting at my computer when my neck started to ache intensely and I felt immediately tired and dizzy. I rested my head on the desk and I guess it was a little faster than I intended as I knocked a cookie plate to the ground and the crash caused Mark to rush through.
He helped me up to bed – I must have been really dizzy – and I remember that as soon as my head hit the pillow, the pain in my neck rushed up into my forehead. It was almost unbearable.
Mark and I both assumed that I must be exhausted from travelling and then getting straight back into work, and I guessed that my neck pain was from trying to snatch forty winks on planes and trains.
About 3am that morning, I awoke in agony. I sat up and my neck was so stiff, I knew something was wrong. I tried to put my head to my chest but it would barely go down at all. Sitting up seemed to slightly relieve the pain in my head. I pulled back the covers and checked myself for signs of a rash – nothing. I put the screen on my phone to full brightness – no eye discomfort.
At this point, I thought meningitis seemed unlikely, but I knew a couple of the warning signs were there, so I dialled 111. The operator asked lots of questions, so did a nurse, and finally a GP called back at 5am. He thought I should see a GP, but didn’t seem overly concerned, so I laid back down and slipped in and out of sleep until visiting my own doctor that morning.
Walking to the GP’s surgery was horrendous. I normally have quite a bouncy gait but every step hurt. The tightness in my neck sent shockwaves of stabbing pain up through my head and down through my back. By the time I was called through to see the doctor, I really wanted to be ok, so I think I probably played things down in my appointment. Note, don’t do this! I felt like I was being positive, but I was actually masking the severity of my pain.
The GP seemed confident that is was a migraine, and prescribed me codeine and another medication designed to stop migraines as they begin. I took the doses prescribed and climbed back into bed.
I really didn’t want to spoil the kid’s half term break, so I convinced Mark he’d be fine to take the kids out to the park.
He hadn’t been gone long when I woke from a nap in extreme pain. I can’t really describe it, but it’s the kind of pain that seems to begin from deep inside and permeate outwards with tightness and bruising. It sounds silly, but you know how much it hurts to get bumped on the ear? That throbbing pain when the cartilage is hurt? It was that kind of pain, but intense and everywhere.
I was blinded by it. My skull felt ready to burst. I tried to sit up and started to vomit, and it just wouldn’t stop. I could hardly open my eyes now. The light felt too bright. I was frightened.
I dialled 111 and tried to speak but I was shaking violently and still vomiting. Obviously the operator didn’t have to ask many questions before she told me an ambulance was on the way.
I had to get downstairs to unlock the door and it took every bit of strength I had. I just wanted the pain to stop.
A first response car arrived within minutes and two paramedics came in. I curled up on the sofa and kept trying to pull a duvet over me but they said I had a fever. They were sweet and funny and I found myself cracking jokes. The embarrassment of being a sweaty mess, plus their friendly banter seemed to give me the adrenaline I needed to overcome the peak of the pain and I think (I could be wrong!) that I managed to be pretty coherent.
I was still convinced I just had a migraine or flu, but then they told me I had to come into A&E to be assessed just in case. I said I couldn’t. I remember starting to cry. I said I really was in too much pain and too dizzy to sit on a chair in the waiting area. They laughed. I started to realise I was probably a bit more poorly than I thought.
The next 24 hours are a blur. I remember Mark coming into the house and hearing him usher the kids straight upstairs so they wouldn’t see the paramedics. I can’t imagine how frightening it must have been for them to come home to find two emergency vehicles outside the house.
I remember how much the jolting hurt as I was wheeled from place to place. I remember wrapping the hospital blanket around my head because the lights were so bright I felt like they were burning through me. I remember singing to distract me from the pain. I remember humming and grunting and rocking. Anything to get through the hours, minutes, seconds.
I asked a doctor to knock me out with a sedative. Begged him even. I remember him explaining that it’s not how things work.
Even though I was in agonising pain, I remember still being convinced I’d be told I was fine any minute. I was ready to feel like a nuisance who couldn’t handle a little headache. And then I realised I had a cannula in my arm and I probably wasn’t going home. “They’ll pack me off home in the morning,” I thought.
Then I was moved upstairs. Someone told me it was a “mission ward” and I had visions of armies and battle plans for hours until I realised they’d said “admissions ward” – it turns out at this stage the meningitis was starting to affect my hearing.
More hours passed. The night was noisy. I prayed for sleep. Nurses and doctors came and went. Did obs. Took bloods. I think Mark and my mum came the following evening. I’m not sure.
They put drops in my eyes and shone lights in them. They asked me the same questions over and over, spoke about Glasgow Coma Scale, migraine, infection and other things I couldn’t quite take in. I started to feel like I wasn’t me anymore.
There were periods where I felt lucid and calm, and periods where I didn’t. I cried almost constantly, involuntarily. Sometimes silent tears, sometimes a pained whimper like an injured dog, sometimes full blubbing floods of fear and anger and frustration. I got sick of hearing myself.
After a couple of days, I assume the doctors realised that this was either one hell of a migraine or something else was going on. Maybe the bloods gave it away, I really don’t know.
Then there were consent forms. I remember I couldn’t see them so the doctor read them to me. I remember I couldn’t sign my own signature properly – my hands were shaky and weak. So much pain. So much frustration.
Then there was a lumbar puncture – a procedure involving a needle in my spine and referred pain into my pelvis, hips and legs. An odd, disorienting sensation. I remember the lumbar puncture clearly because it hurt more than I expected, but also because on being told I must stay still, I started to remember bits and pieces of what mindfulness has taught me. I started to control my breathing and will my muscles to relax one by one. Instead of fighting and blocking out what was happening to me, I began to accept the reality of it and choose to be calm. Somehow that worked.
The pain didn’t subside, but my body and mind felt less fraught and that was incredible therapy. The puncture was quick and I was left with only an ache afterwards.
Then I fell back into a haze of pain, and focused on controlled breathing until I fell into a deep, welcome sleep. I awoke to find a nurse taking obs and for a moment, I felt ok, almost completely ok. She asked if I felt pain or sickness and I replied no. As soon as she walked away, I felt enveloped by pain, sickness and confusion. “I do feel sick!” I yelled to a passing nurse, who went off to get an anti-emetic.
Somehow in my haze, I convinced myself I couldn’t find my sick bowl. Never one to accept my limitations, I stood and started to walk. I tried to make it to the ward sink and suddenly it felt like someone had gripped me, and spun me briskly to the floor.
I know I blacked out entirely. I couldn’t remember hitting the floor. I couldn’t open my eyes. I couldn’t speak. I could hear myself making a guttural noise, but no real words would come out. I could hear shouting. Someone sat me up. I blacked out again. I wondered if this was it, this was when I died. A tiny part of me, facing all that pain, wanted to give in to it, but most of me was scared and wanted to fight. Wanted to see my children again, wanted to laugh, wanted to be strong.
“Are you swallowing blood? Can you breathe? What were you doing?” There was shouting, Lots of voices, I was being lifted onto a bed. My bed? Slowly I started to get my words back. I started apologising profusely through frustrated, humiliated tears. I realised that I’d bitten through my lip.
I was settled back into my bay. I’m not sure how long passed after that. I know that I tried to sit on my chair a few hours after while they changed the sheets and collapsed again. I remember crawling on to the floor, vomiting. Still apologising.
Controlled breathing, sleep, pain, sobbing, controlled breathing, sleep, pain. A regular codeine regime and I started to feel numbed enough to think. I started to gain perspective on how utterly ridiculous it was to be cross with myself for being ill. I started to build my mental strength again, which was crucial as what came next nearly broke me.
I don’t know how many days has passed when a doctor came by and told me I was probably not suffering from meningitis, it was probably migraine. Relief. Joy. But then another came by and said it was in fact probably encephalitis. I was put on a medicated drip. I opened my stronger eye, grabbed my phone and used every ounce of determination to Google the term. I couldn’t believe what I was reading.
At this point, I phoned my sister and we got very scared. Encephalitis is very, very serious and the stats on survival and full recovery are not good. I was confused. I was angry at myself for not asking questions. I couldn’t understand what was happening. This was a serious illness but I was starting to feel more coherent, how could I be dying?
I started to think about all the things I should have done. I’m not going to get too morbid here, but I really did think I might never see my children again, and that is something that will never leave me. Everything they say about final regrets is true and that day cemented my priorities more clearly than ever.
My mum came in, my dad was calling the ward repeatedly. Things were getting serious. My mum asked to see a doctor and I remember using all my strength to be in the moment, to focus, to be coherent and lucid and calm. I know I’m like a broken record but honestly, if you study mindfulness when you’re well, it will be there for when you need it most.
I asked all the right questions. I asked her to tell me if they really suspected encephalitis – they did. But they’d caught it early? – they had. And so I’d be ok? – it’s good it has been caught early. I remember that no matter how I phrased the question, she wouldn’t tell me that I’d be ok. I know that’s part of their training and I know the logic of it, but that was scary.
My mum held my hand, kissed my head. She was so brave. When she left, I think I was already half asleep. And then the doctor came again and well, I’ve never been so pleased to be told it was decidedly not encephalitis. It was meningitis, viral not bacterial. In the scheme of things, this was very good news. I cried and cried and cried with deep relief. I was, in all probability, going to be ok.
I was moved up to a neuro ward that night, I think, or maybe before the good news. I don’t know, but that’s where I stayed for another week.
And that’s where the hospital part of the story gets kind of blurred in my mind. The pain gently subsided and I began to catch up on sleep. I became able to eat at last and slowly began to open my eyes.
I was told children weren’t allowed on the ward, which was hard, but I was mostly asleep anyway. Mark sent pictures constantly and that kept them close to me. Once I could see properly, I was able to Skype and message the children. Being strong for them made me feel strong. Visitors came and went. I slept and slept.
And finally, finally, I was allowed home. 10 days after admission. I walked slow, pained steps into the lift, clinging to Mark’s arm. I panicked when we hit the cool air. I got nervous before the kids arrived home. I did my best not to drown them in tears – I had missed them more than I could express.
In the few days that followed, I tried to do too much. By too much I mean I tried to help load the dishwasher or spend more than 10 minutes chatting online, and I would feel back to square one. Back in bed.
I struggled to climb the stairs, vomited if I overexerted myself. I lost days to sleep. It seemed to go on forever and at times I gave in to self-pity. I was home, but I was still apart from everyone. I was still incapable. I was determined to be the me I was before, to be productive, to be a mum, but I was trapped inside my broken body with its broken brain.
Once again, I’d confused a positive outlook with one of denial. Faking it ’til I made it seemed like the right step, but was actually slowing my healing.
So I made the leap. I confessed on Facebook that I was not ok. I confessed that I was trying to will myself into good health and it was foolish. I needed to rest. I needed much more rest.
Friends and colleagues were there for me immediately. They helped in ways I fear I’ll never be able to repay, so great was their generosity. They sent kind words, they helped with the kids, they brought frozen meals and fresh soup, they helped promote my work to keep my income stable in my absence. They gave me help but more importantly they gave me hope.
A month on from when I first fell ill in front of my computer that Monday afternoon, I was still weak, sleepy, and shaky but little parts of my old self were coming back, and some days I felt strong.
Some days hit me hard. It would feel like a step back. Spasming neck, nausea, pain – but it lessened far more rapidly than the time before, and more rapidly still than the time before that.
I made a serious effort to focus not on the individual steps forward and back, but on my overall progress along a path to recovery. I let go of impatience and made a decision not to let the bad days get me down. I started truly moving forward.
Two months after I first fell ill, I was almost back to normal. A tired but pain-free version of my former self. Back to playing with the kids, back at work and very happy.
Three months post-hospital, I’m feeling great. I’m back to doing school runs, I swam on holiday with the kids, I’m coping with forest walks and princess games and cooking dinner. I’m also getting 7-8 hours sleep a night and listening to my body’s cues much more closely than ever before.
I’m not ill anymore, I’m truly recovered, but I’ll never go back to being the old me. The mindful positivity I so believed in before was, for the most part theoretical. But it was put to test and it means so much more to me now. I feel I better understand what truly matters, and how core self-kindness is to survival and happiness. It’s a lesson I’ll keep teaching myself, and a lesson I’ll continue to share with the children.
Be kind to yourselves, breathe deep, do what you love. Life is for living.