The Meningitis Diaries

Well, I only went and got meningitis, didn't I?

Even as I type that, it seems hard to believe. Meningitis used to be this big scary thing I heard about a lot; especially after I had my babies. And it is a big scary thing and I am very lucky.

As a little bit of background, for those who may not know, I have a collection of weird and wonderful health issues, including: Ehlers Danlos Syndrome (Type 3), Agammaglobulinemia and Mast Cell Activation Syndrome. I was first diagnosed with these rather exotic (ha, I wish!) conditions ten years ago and over that time, have learnt more than I would have liked to about them. On the average day, I suffer with chronic pain, fatigue (I'm not talking about tiredness here, but fatigue) and a number of gastrointestinal issues. 

Anyway. I have been receiving infusions to treat my immunodeficency (Agammaglobulinemia) for the last six years and for the last four, have struggled with incredibly incapacitating migraines post infusion. Delightfully, they never started immediately post infusion, but rather waited a patient 72 hours before flattening me. 

Then, around a month ago, I had my infusion, as normal and settled in for what I knew would be a fairly horrendous weekend. I had the infusion on Wedneday and by Thursday I was feeling pretty rough; Friday brought with it an increase in the scale of roughness and by Saturday I was completely incapacitated - I couldn't move - I'm talking not even change position in bed - because the pain in my head was so severe. I couldn't move my neck, or turn my head. I couldn't even open my eyes because the photosensitivity that I was experiencing was so severe. Unbeknownst to me, at the time, I was also slurring my words and not making very much sense to my husband, Paul.

A side note, but Paul had taken my kids camping on the Friday evening, in the hopes of allowing me to rest with my 'normal' post-infusion migraine. I like to think someone was looking out for me from above (thank you, auntie Janis) because at around midnight on Friday Paul arrived back with two very tired and emotional kids. The camping plan had gone awry and what a blessing that turned out to be... 

Saturday morning rolled around and Paul stated that he thought I needed to call the doctor. I vehemently refused, having been to A and E way too many times in my life; knowing that I would be met with the perpetually concerned and confused expressions of those in charge of my care. The conditions that I have have only really been known about for the last thirty to forty years, which means I (like many others) am both an 'interesting' patient and very difficult to treat for fear of not knowing what will or will not work.

Fast forwarding slightly, my slurred speech prompted Paul to override my very stubborn refusal to call the doctor (thank you, baby) and before I knew it, an ambulance was in my driveway. This was less than ideal with two small children, but all I could hope is that they would know that the paramedics were here to help mummy; having both studied 'people who help' at school and nursery respectively.

I remember very little of the next few hours, apart from seemingly holding my head together in the ambulance as it felt like it was in two halves, and shaking uncontrollably in A and E whilst they tried to get my pain under control. I'll never forget the wonderful nurse who gave me a Covid mask for my eyes - which couldn't, at this stage, tolerate any light at all, or my wonderful nurse from my infusion unit, Jake, who came running to cannulate me in A and E as soon as he heard I had been admitted. 

In hospital, small acts of kindness are incredibly moving and really stay with you. Lying in A and E, I heard Jake's familiar 'Miss Caitlin, what have you done?!' and it was truly everything. Jake cannulated me (fun fact, if you're regularly cannulated as I have been, your veins hide and it makes it nearly impossible to find them without an ultrasound) and then removed his glove to hold my hand. This would be the first of two times someone made human contact with me in this way and reassured me in a very scary moment. 

I know (but remember little of) being rushed for a CT and an eye exam to rule out a brain bleed or stroke. I remember hearing the team in A and E discussing my slurred speech and I felt totally perplexed and, to be honest, a little indignant. I was most certainly not slurring my speech to my mind. Turns out that's a big indicator of a stroke, which, thankfully, I was not having. That first night went past in a very weird blur. The doctor's quickly realised that I had meningitis and began treatment with antivirals and antibiotics. I was also, after what felt like an eternity, given intravenous morphine, which was the first and only thing to touch the pain. 

Enter Gifty, who's name couldn't be more apt, who looked after me that first night in the A and E 'pitstop'. Like me, Gifty is a mum, and she was right beside me each time the rolling panic of being away from my babies started to hit. Each time the morphine started wearing off she would be beside me, administering the next dose. At one point in the night I remember crying so much because the pain was unbearable; I was alone and feeling so unbelievably guilty for not being with my children and for having exposed them to an ambulance whisking their mom away. Gifty gave me my morphine and then removed her glove and stood holding my hand and reminding me to be strong. I never got to say goodbye to Gifty, but I wish I could have thanked her for the way she humanised me. She made me feel safe and cared for in a way that is often difficult to feel in hospital.

And then, I was moved to the stroke ward. 

Being immunocompromised meant that I wasn't able to be on a general ward and had to be kept in isolation and, although I was almost certainly not having a stroke, the unit had a spare bed in a side room. I'm not going to lie or mince words; the stroke unit is a really tough place to be. My heart bled for each and every patient in the ward, and every single family member coming to support and care for their loved one. I spent the day in the stroke ward with my sister - who bathed me (much to her delight - I was, at this stage, not my freshest) and was able to eat some small snacks that she had brought me. One thing that you need to know about my sister, Christie, is that she will always have the good snacks ready to give anyone who needs them. 

The stroke unit was where I met Terrence, who, deserves mention by name for being exactly who he is. Terrence made me laugh and feel at home in a place it's impossible to feel those things. I will never forget him asking me if I was planning to 'have a wash' and then panicking and saying 'of course I'm not suggesting that you need one, it's just nice to feel fresh... Of course I'm not saying you aren't fresh...' Oh, Terrence. Your kindness and respect meant everything to me. Thank you for finding me a chair for the shower, fresh towels and soap. Thank you for patiently waiting for me to shower so that I didn't miss the registrar who was coming to do my lumbar puncture. Thank you for being so concerned every time I hadn't touched a meal because I couldn't face eating. Thank you for being a bright light in a place that was really frightening for me. 

And then we get to the lumbar punctures... Wow. I had had an epidural when I had my daughter, Maddie, so I wasn't expecting it to be awful. That said, I wasn't at all keen on a huge needle being put into my spine. The first lumbar puncture was something of a disaster because we didn't manage to collect any spinal fluid and the needle unfortunately grazed the nerves in that area. So, when I was told I was feeling 'pressure', it was in fact blinding pain. That said, I was proud of myself for getting through it. A side note; an epidural really isn't a patch on an ordinary LP. For one thing, the pain you're in during labour really does mask the discomfort of the needle, and for another, you get the most amazing gift at the end of it for your efforts. Meningitis has no gifts; no pleasant ones at any rate!

And then, I was moved to the Cystic Fibrosis Unit. The move couldn't have come at a better time because at this point, day 3, I was feeling pretty horrendous. Although my pain levels had reduced, I was still completely incapacitated and missing my tiny humans in a really painful way. I wasn't allowed to see them due to being very unwell and immunocompromised and it was horrendous. 

I was greeted in CFU like a family member coming home and given a room I can only compare to staying in a hotel. Air conditioning and a private bathroom. Things were looking up! The improvement in my physical surroundings wasn't the best thing about it, though. The staff in CFU were utterly fantastic. With nothing being too great of an ask and regular pep talks when I collapsed in fits of tears about being away from my babies, I couldn't have asked for more. 

One evening, I was having what turns out to be a panic attack - I was having chest pain and feeling breathless, convinced at this point that I was having a heart attack. After checking my observations, which were okay, my nurses Gautem and Dan set about organising and making hot chocolate for me. And, I'm not going to lie, that hot chocolate all but cured me. 

There were so many moments and people that got me through the seven days I spent in hospital that it would be impossible to mention them all here. What struck me most about the experience were the people who connected with me; human to human. Who patiently reassured me, time and again. Who acknowledged the pain I was in and made it stop; even if momentarily. Those people weren't limited to the qualified hospital staff, either. To the girl who asked me if she could help me to the toilet, not knowing what was wrong with me or if it was contagious or not, thank you. Thank you for seeing me during one of the scariest experiences of my life and for asking if you could help me. 

To every nurse that held my hand. Thank you. To every doctor who continued to try to work out what was wrong with me. Thank you. And to every person who indulged my rather sarcastic sense of humour; thank you. 

Fast forwarding to where I am now, with two small humans watching their 'ipaddies' behind me (I know, I am excelling at mum life here!) I'm a world away from where I was. I saw a wonderful neurologist this week who took great care in explaining exactly what is going on in this weary old body and brain of mine. I finally understand what has been causing my recurring migraines, visual disturbances and generally shit last few years, whilst also being able to share a chuckle about somehow being unfortunate enough to also get meningitis. There's still some way to go until I feel totally myself again and as ever, there's a long road of managing these conditions ahead of me. 

Last weekend we finally managed to get out in Delilah, our self-converted camper van. This was the vision I kept tuning into when I was in hospital and whenever I wobbled, Paul reminded me of exactly what we'd be doing when I got out. Getting in the camper. Driving to the sea. Swimming. Repeat. 

 Well, baby, we finally made it there. We finally made it to Charmouth. We finally swam in the sea. And, for the first time in possibly my entire existence, but certainly for the first time I could remember, I didn't care at all about what I looked like in my swimsuit. I might even go as far as to say I felt beautiful, when Maddie told me how pretty I looked with wet, salty hair. 

I guess the thing about the really shitty things, of which I would count meningitis, is that they really, truly make you see the magical things. They make you appreciate the world in a way I'm not sure you can without hardship. They make the sound of birds singing louder, the feeling of sand under your toes magical and the experience of watching the world go by one that moves you to your core. 

So, friends. I got meningitis, didn't I. And although I'm forever changed because of the experience, I'm so fucking lucky, too. 

I got to watch this incredible support network of mine rally in the blink of an eye. My dear parents and parents-in-law, my Eliana, my sister, my husband, my friends -  making sure my babies needed for nothing. I really am the luckiest and richest woman in the world, if also one who is not blessed with a particularly well functioning body.

So, friends, I'm back. I'm moving a little slower than usual and intentionally taking my time with things. I don't ever want to forget how blessed (I use this word so infrequently because of it's cringe status, so please appreciate how much I mean it) I am and have been. I don't ever want to forget the feeling of floating in the sea and being so truly, wonderfully grateful to be me, pain and illness and all.

Thank you to each and every one of you for your ongoing support over the last couple of months. Each person, each text, each message, each chocolate bar, has come together to paint the most beautiful picture that I have framed and hung deep within my heart.

With all of my love, always,

Caitie xxx