Living with an undiagnosed autoimmune disease has felt like an actual, literal shit storm.
Picture the scene: you’re walking across some distant moorland, with relentless, horizontal rain slashing at your face. The wind pushing is against you as all the elements come together, screaming, ‘IN YOUR FACE, FUCKER!’ You check your map, only for the wind to rip it out of your hands. You have weeks, months left ahead of this, and it only feels like it’s getting worse. You are soaked through to your core, miserable, sore, defeated.
This is what it’s felt like to have Churg-Strauss Vasculitis.
It all started a year ago when I came back from my travels in Iceland. Hopping off of a 10-hour coach journey from the airport to my hometown, I was pretty knackered.
‘What’s up?’ my boyfriend asked.
‘I’ve got a pain in my shoulder. It’s really hurting, actually.’
What should’ve been a fairly painless ten-minute walk from the coach station back to my student house was instead a slow deterioration of my physical state. I was struggling to breathe, I couldn’t carry my bags; I soon found myself panting for breath and doubled over in pain.
‘I think we should call an ambulance’ my boyfriend said, clearly panicked at the situation. Things went from bad to worse, but all of my obs and sats were fine when the paramedic turned up. A lovely guy, he told me to keep a close eye on it and try taking ibuprofen for the pain, which I felt was a fair enough suggestion. ‘What a palava!’ we all said.
Fast forward a week and the pain comes back four zillion fold – I can’t breathe at all, I’m bawling my eyes out in pain and the paramedics are back at my house, with my mum thrown in for good measure. The pain was unimaginable – I can only describe it as what I imagine it would feel like to have several knives embedded in between your ribs. Trying to breathe with what feels like knives in your lungs is quite painful, so one delightful dose of oral morphine later had me feeling a tad more relaxed.
I was taken to A&E where I was told, ‘we think you have a pulmonary embolism – could you come back in a few hours?’ They measured my d-dimer, which indicates whether a clot is forming or breaking down, and found a high presence of it, so injected me in the tummy with what I’m assuming was a blood thinner to break down a clot. Whatever it was, it was for that reason. They then (rather cleverly) took an x-ray of my lungs, which showed some abnormalities. They then took me for a CT scan of my lungs, and alas…
I had two lungfuls of pulmonary nodules, which, as you can imagine, was quite scary. My mum broke down in tears as doctors broached the subject of The Big C. ‘We can’t rule it out’, they said. Yikes.
Fast forward a few hours, and I meet with a consultant who says that what I have is most likely an infection picked up from some distant, foreign land I’d been to. Curse all of those fleeting trips away! However, he also says that it could be an autoimmune disease – alternatively, it could be The Big C, but ‘he feels that’s unlikely.’ I’m given some strong antibiotics and the reassurance that I’ll be closely monitored and examined over the coming months to see what the Christmas stuffing is going on.
Three months go by and I’ve had endless tests; ultrasounds, echocardiograms, x rays, CT scans, the list goes on. They’ve taken enough of my blood to fuel a small island of vampires and enough pee to fill a canal. Which brings me to my next, new and exciting symptom…
Here I am, minding my business at my best friend’s house as I go for a wee, when out comes blood, and lots of it. No, it’s not a period, yes, I’m definitely peeing that blood. It’s also coming out of my back end, which doesn’t seem like the best sign. ‘Oh well’, I shrug my shoulders. I had plans to go to London and get an emergency passport that day, and I was not going to be missing my appointment. I made contact with my consultant, who got me admitted to hospital as soon as I set foot back in Plymouth that afternoon.
A week goes by in hospital, several tests take place, and I’m still no closer to knowing what’s wrong with me. They tell me that ‘we really need to find out what’s wrong with you before you leave this place again’. The nodules have completely screamed ‘TITS’ at my lungs, which have cowered away in small corners and cried themselves to sleep. In other words, my breathing has gone to pants, therefore walking for any amount of time has gone completely out of the window. I cannot stress this enough: I really cannot walk anywhere, or do anything. Regardless, all of the tests they’ve taken have essentially just come back as shrugging their shoulders and saying ‘I dunno what’s wrong with her, ask that guy.’ The one test that’s come back with anything remotely abnormal is my stool sample, which has tested positive for inflammation markers. This causes my consultant to believe I’m at ‘extremely high risk of having inflammatory bowel disease.’ Wahoo!
After a bit of a breakdown, I was discharged from hospital and told that actually, my nodules are going down, so I should feel better soon! And I did, for a while. I slowly regained use of my lungs, I was able to walk to uni and exercise again, and everything was hunky dory. I spent the summer in Spain, which seemed to make my bowel very grumpy with me, only to come back home and have the same shit happen again.
I couldn’t walk, I couldn’t breathe. I had episodes of unbelievable, agonising pleurisy – one lung felt as if it had a lasso wrapped around it, the other embedded with those ever familiar knives. My bowels were in disrepair and I became ill with everything; at one point I was vomiting several times a day, losing weight and coughing up what was remaining of my pathetic excuse of a pair of lungs. I had the mother of all chest infections, topped off with a flu and garnished with some tasteful extras, such as an overwhelming desire to die. This blog is insanely light hearted, but rest be assured – this journey has been one of the most difficult periods of my life, and for that reason I’m not 100% ready to divulge and relive every single detail of it.
This leads me to this point – diagnosis. My consultant finally decided that they’d put off investigations long enough – it was time for a lung biopsy. They could’ve done one when I first came in in November 2016, but because I was so young, it seemed unnecessarily invasive for what could’ve just been an infection. They performed a bronchoscopy (which, by the way, was fucking terrible), which then gave me the all clear for a lung biopsy (which, also by the way, wasn’t the most fun thing either). Twelve days later, I walked into my consultant’s office and got my diagnosis: Churg Strauss Vasculitis.
I’ll no doubt be writing lots more on this blog about my condition, but in a nutshell, Churg Strauss Vasculitis is an inflammatory based autoimmune disease which causes inflammation of the blood vessels. This is what caused my pulmonary nodules, along with other symptoms I’ve suffered with (but will not be sharing just yet!). It’s not curable, but it is treatable with steroids, which I’m currently on now. It’s such a tricky thing to diagnose due to the vastness of Vasculitis as a disease, plus the fact that the many branches of Vasculitis tend to overlap, but it is diagnosable if you hand over a chunk of lung to your local research team!
I’ll also be writing about my experience of the procedures at hand, with the down-low of how I’m doing as time goes on. I am still ill, but nowhere near as ill as I was. I am getting better! Each day is better than the one previous, and for that, I am truly, unequivocally grateful.
Until next time.
This blog is dedicated to Charlie Burton, Anita Tagell, Emma Neudegg, Enis Tyler, Wesley Allen, Charlotte Burnard, Anna Marie Stidston and Dani Devenney, along with every single family member and friend who has supported me through this tumultuous time.