Life with Lyme Disease

EMOTIONAL, HEALTH, MOTHER OF ALL LISTS, THOUGHT-PROVOKING

I’ll admit it, I’d never heard of Lyme Disease,  or if I had it had gone in one ear and out the other. Then last year I worked alongside Julie Seal at Facebook and witnessed first hand what the life altering implications of this disease are and asked, probably a little too often, for her to write a list for me.

Here it is:


In 2007 my boyfriend and I took a road trip up to see my sister in Scotland in our 1977 Triumph Toledo. It was ace. We stayed in a mad hippy commune, went camping, hiked lots, had loads of fun, and unbeknown to me I was also bitten by a tick, that has – ten years later – caused damage to my heart, brain, muscles, nervous system and ability to walk.

Lyme disease is a bastard. Well, more accurately it’s thousands of tiny bastard bacteria that burrow into your organs, glands, joints, nerves and brain and fuck with stuff in weird ways. Sods. It’s insanely complicated to treat, massively misunderstood, obscenely under-diagnosed and totally contentious. Leaving tens of thousands of people in the UK screwed every year, and most never getting diagnosed.

I’ve mostly been a ‘stuff and nonsense’ stoic when it comes to health and pain, generally ploughing through. I’ve ignored the regular blackouts (up to about 20 times a day), constant relentless headache/earache/gland pain combo, the stiffness and joint pain, the crushing fatigue and the insomnia (4am starts for about 3 years)… But when my legs just stopped working last summer after a week of feeling severely weirdly stoned, I had to give in and go to A&E.

The NHS has no clue about Lyme (they are trained wrong, totally not their fault, there is lots of lobbying to get them to change their training and guidelines for diagnosis and treatment). So in A&E, after hours of tests, being told “nothing exists that means this would happen”, my muscles slowly stopped working, my brain swelled up, I thought the Queen’s name was Helen and could only move my right arm, slurring and unable to understand much of what was going on. Yet the doctors told me there was nothing wrong, and that it was probably stress. (Encephalitis and full paralysis, stress!) So I discharged myself to be looked after by my amazing parents and sisters and was properly diagnosed in Germany and the US.

So it’s been (cliché style) a journey… here’s what I’ve mainly learned:

  • The hardest bit about being ill isn’t the being ill bit. It’s how other people react. Most are amazing, but many don’t know what to do. But sadly I’ve lost a close friend (who just disappeared as soon as I became sick) and I’ve become distant from some previously close family members who totally inexplicably refuse to believe I have Lyme. Feeling crap, becoming disabled, everything changing, that’s crap, but the emotional stuff like losing friends and family, that’s the very worst. 

  • That said, the friends and family that have seen me through are everything. I love them all so dearly.

  • Posh hotels don’t want you to wee in their lobby. My first proper time in a wheelchair was at the Women’s March. And much as it felt like a shitty personal moment amongst a brilliant one for womankind, I’m grateful I was with no-nonsense bloody lovely northerners who just steam-rollered me through the crowds. Plus we got to use the toilets in posh hotels as they’re mostly the only disabled access ones and nobody is going to say no to a cute blonde crip 😉 Sometimes hotels have also given me room upgrades just because of the pity vote. Not airlines though, they’re great at pushing you through airports, not great at letting you have pain-relieving leg-room for free! 

  • Find friends who’ll take the piss. The first day I had to use a wheelchair in the office I was really scared. I’m not sure why but I figured that people might think I was trying to get attention. (It was mostly to experiment with a way to minimise the pain and exhaustion of trying to walk). My colleagues were without exception amazing about it, being helpful, kind, not making a big deal of it (the thing I feared the most) and helping me to not freak out. But the best bit about that day was having dinner with some very old friends in the evening and them all re-naming me ‘Julie Shit Legs’ then hysterically laughing about it. Thank god for those lads. Being treated normally is all I want and that particular piss-take did wonders for the soul.

  • Notice, but don’t focus. My left bum cheek twitches. Like constantly. It’s not really in a twerking way, not nearly that fun. My left eye does the same… for months on end. (Meaning I essentially flirt from in front and behind!) It’s the Lyme bacteria fucking with nerves. It also does scary stuff to my eyesight, annoying stuff to my brain, fucks with glands that secrete hormones so they go awry, and obviously makes my arms and legs not work brilliantly. It’s important to notice these things, then try to ignore them as best you can without obsessing or over-analysing. My left arm is also being particularly crap at the moment, not really working when I need it to. Like for essential phone-holding whilst texting boys stuff.

  • Don’t fucking patronise. Since being very young I’ve been fiercely independent, and when people speak to you like a child, can’t make your own decisions and don’t know what’s best for you because you’re not well, it’s hard not to want to trip them up with my walking stick. 

  • Brain damage scares people. I have brain damage, my memory is really shit. Like, really shit. So I don’t always remember faces, let alone names. And have daily lapses with a lot of other crucial bits of information too, like words. Or how to get to and from work. (It really doesn’t help when everyone tells you they have a bad memory too, that ain’t a patch). But when you mention you have brain damage it does freak people out a bit.

  • I’m mindfulness as fuck. You become GREAT at mindfulness meditation when your brain doesn’t work properly. Cos literally can’t handle thinking about anything other than this VERY thing right now. It’s like my brain is on semi-constant screensaver mode. Which basically is the zen boss level, right?

  • Lyme bacteria gives a mellow high. Having bacteria mess with your brain often makes me feel a bit nicely mashed, like, yunno, the olden-days of drugs in dodgy nightclubs etc. Except that it’s now much more of a ‘watching grand designs on the sofa with my lodger and rolling my eyes back in my head while not making a lot of sense’ type thing.

  • Get drunk if you need to. In fact, do whatever you need to get by (within moral compass, obvs, don’t start a fun murder spree). People make judgements. When you have been house-bound and in constant pain, it’s an amazing release to drink booze and try have fun now and again, but when you’re crawling up the stairs of a pub dressed as a Victorian lady or have a seizure at a gig because of the lights, people make judgements about you being out at all. Sod those people. 

  • Optimism isn’t always helpful. I’ve always been a chronic optimist. And so soldier on just like most stiff-upper-lippers, but when really bad things get me down, I’ve noticed it’s not always helpful to have friends be optimistic about it, because it’s kinda denying the reality of it. Things can be shit, and acknowledging their shitness is actually beneficial.

  • Sometimes it’s all perfectly apt. I told the story of my traumatic experience of going to A&E at a Moth storytelling event in Shoreditch, and ironically had a mild seizure at the side of the stage afterwards where my legs stopped working and my left arm wouldn’t stop flailing around. Comic timing. 

  • Nobody JUST has Lyme. I also have Bartonella, Babesia, Chronic Active Epstein Barr Virus (or maybe that’s Carotidynia mimicking CAEBV). I have Hashimotos Thyroiditis, (not actually a Japanese superhero) and Postural Orthostatic Tachycardia Syndrome, Peripheral Neuropathy, and they’ve just found a gene mutation called MTHFR that my dad has nicknamed Motherfucker. My body is busy.

  • I’m a black belt in Chronic pain. It’s some next level sheeeeit. When people ask if my tattoos were painful, I kinda laugh, because a few hours of poking at your inner-skin is nothing. Broken bones, operations and many tattoos aren’t patch on proper chronic pain. After years in constant pain it grinds you down to a horrible, irritable, angry, tearful depressed mess. You also become incredibly thin-skinned, and generally emotional. And the bacteria messing with my serotonin uptake receptors mean that I struggle with depression a lot too. Though I try hard not to indulge in a self-pity party.

  • Sorry if I was mean. Or horny. I can’t metabolise oestrogen properly, meaning I’m sometimes (more than I might care to admit) super-hormonal angry, or cry a lot (A LOT) or sometimes testosterone-y, which gives me a unique insight into being a 16-year old boy as I’m sometimes weirdly confident and very, very highly-sexed!

  • It complicates babies, which is the saddest part. The main reason for my depression isn’t the constant poorly-ness, it’s the fact that I can’t try to have a baby until my body works better again and there’s less risk of passing it on too. I’m 38, divorced, have been desperate for a baby for years and plan to do it alone as soon as I can. The very second I’m in remission I’m heading down to the sperm bank and fertility clinic! Eek. Boom.

  • The most thanks has to go to my amazingly smart scientist sister who was diagnosed and treated years before me, and recognised my symptoms so helped me get diagnosed and treated. Without her I’d be housebound or dead. God that’s a bleak way to leave things isn’t it? Well, it’s honest. But I’ll end with this…

  • A lovely women once told me that illness can sometimes be a gift. And in a weird way this has been. That might seem eye-rollingly offensive other chronically sick people, but for me I really mean it. It’s taken loads away, but it’s genuinely given me stuff too.


  • (I’d urge anyone who thinks they might have lyme to read up here: http://lymediseaseuk.com/ and you can also join this group for help if you do: https://www.facebook.com/groups/LymeDiseaseUK/ )

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1 Comment

  • Reply rachelmorath April 16, 2018 at 7:02 am

    I have a family member with Lyme and they have pretty much retreated from family life. We have no idea what to do or how he could be treated. Any advice?

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