Club Soda’s own Anja Madhvani tells her story about being diagnosed with tuberculosis.
March 24th marks World Tuberculosis Day. I didn’t know that until last year when I was diagnosed with TB. Tuberculosis is an infectious disease usually caused by Mycobacterium tuberculosis (MTB) bacteria. It most commonly affects the lungs, but it can also strike in the bones and other organs. TB vaccinations are no longer given as they were largely ineffective. It is carried by around 1/3rd of the world’s population, and for many, it is a death sentence. In the UK we are lucky that treatment is available and it is absolutely curable. But it is still not much fun.
TB is spread when someone who has ACTIVE tuberculosis of the lungs exhales infected air. If you breathe in this bacteria, the disease can then set up home in your body. If you do not show any symptoms but tests show that you have come into contact with TB, this is LATENT TB, effectively the TB is lying dormant in your body. You cannot transmit latent TB to others, and unless it becomes active it will not affect you in any way.
Club Soda wanted me to share the experience with you, and particularly look at my relationship with drink whilst on treatment. So I think I’ll take you back a little, and tell you about what kind of drinker I am.
I’ll start with January 2017. I was working in a job that was destroying me, managing a brewery taproom and event space with my best friend. Hours were grueling, and the job had seeped its way into every corner of my life. I couldn’t sleep, I was eating terribly because I was too tired to organise food shops and prepare meals, and I was drinking most days. Not binging, but there would always be some beer going in, whether it was a few sips of the latest creation from the brew team, or commiserating another miserable day with a half after work. It felt as though I was giving my entire self to this job, to be constantly met with a lack of support from the business owners, and to be told repeatedly how useless and disappointing I was. I’d wake up to texts from my boss asking why this hasn’t been done, or whether I’d seen the latest trip advisor complaint. I was called in on rare days off to be told what a ‘shit job’ I’d been doing. Essentially, I would describe it as an emotionally abusive relationship with an employer who didn’t understand boundaries and offered no support or guidance. I was depressed and anxious to a point where I couldn’t make simple decisions. I felt like I was drowning in my own self-loathing, and nothing was going to pull me out. I was constantly afraid, nervous and miserable.
I kept making attempts to change things, to fix my behaviour. I had a very clear image in my head of the person I wanted to be, she was healthy and happy. But I couldn’t seem to do it. I couldn’t find enough time in the week to strategise my new life, I felt trapped and empty. My diary was a list of bullet points; how my body felt, what had happened at work, units and calories consumed, and how much I wished I would just disappear. It was the checklist of a person on the cusp of a breakdown. Which, unsurprisingly is what happened when I was made redundant, served a 3 month notice period with no over time (one week I worked 105 hours) or bonus. I haven’t worked full time for anyone since, my self-esteem was in tatters, and I didn’t see myself as being capable of anything. The first hint of stress these days sends my body and mind into meltdown.
Years earlier, my cousin ran the Marathon Des Sables (MdS), a self-sufficient 250km race across the Sahara Desert. I remember thinking ‘I want to do that one day, that’s the type of person I want to be’. In January 2017, it finally felt like time to apply for a place.
I’ve always been a bit of an all or nothing person, and I knew the only way I was going to make the changes I needed was to mobilise social pressure against myself. In signing up to MdS I set myself a goal that was absolutely impossible for the person I currently was. I told everyone I was going to do it. This meant that I was accountable, people would be looking to see some progress and I’d be too embarrassed to fail. People who doubted me would become my greatest motivator. I also decided to fundraise, it seemed this would be the best opportunity I would have to raise a large amount of money for something good. I chose Yorkshire Cancer Research as cancer has affected many friends, and I wanted to be supporting a local charity that really makes a difference in my community.
After losing my job, things started to fall into place, I began freelancing from home and worked part-time in a couple of breweries. My working hours became more sociable, and I spent a lot less time around people who were drinking. It was remarkably easy to change that habit if I wanted to drink I actually had to plan it. I found the balance again, where drinking became a celebratory thing, rather than something that was just happening for no reason. I also started working with Club Soda and discovered so many wonderful alcohol-free drinks, and the inspiring online community. My boyfriend is a very talented chef, and we made more time to enjoy meals together at home. Over the next year, I went from being someone whose only exercise was lugging barrels up and down flights of stairs, to someone who trained with a PT, who went for hikes and runs. I was slowly becoming the person I had pictured. And it was working, I was becoming happier.
Around Christmas time of 2017, I started to feel quite run down. I put this down to being very busy trying to earn enough money freelancing and also cramming in the training. I was exhausted. It was around this time that I stopped sleeping on my side, I could only get comfortable on my back as I had pain in my shoulder and around my ribs. I put this down to an old RSI (Repetitive Strain Injury) from playing the violin, it had been an ongoing problem throughout my life and I’d probably overdone it with all the weights.
I developed a tickly cough, the mornings were particularly bad. It was one of those annoying throat-clearing coughs that is easily overlooked as an unshakable winter bug. It wasn’t until March that I realised how long I’d been feeling run down. The cough had progressed with a vengeance. A week before I was due to depart for Morocco to start my MdS adventure, I booked a doctors appointment, suspecting a chest infection. She listened to my breathing, looked at my throat and said ‘it’s just a viral bug, nothing to worry about’. She didn’t prescribe anything, and I didn’t question her diagnosis. Everyone was run down, this was just winter, right?
I’d raised thousands of pounds, and I had thought of nothing else but this race for over a year. Training and kit planning had consumed every spare penny, I’d fallen asleep every night thinking about which powered food to take, how to make my bag lighter how to build my quads. There was no way that I could back out. My motivation had been to prove something to myself, and to other people. Stepping back from that just didn’t feel like an option.
Before flying to Morocco I stayed with my brother in London, and mum was visiting too. I was coughing up dark green phlegm and began to be quite sick. I also started with the night sweats. But the doctor had said it was viral, it would pass, and so I had some paracetamol and a cry, and hoped it would clear up before the start day. I put the vomiting down to nerves, I was very worried about the race.
Skip forward a couple of days and I was in the Sahara Desert at the start line of a 156-mile footrace, full of fear, doubt, and of course coughing. The race lasts 7 days, and you carry everything you need on your back, food, medical supplies, sleeping bag. You share open-air bivouacs with seven other tent mates, and water is collected at checkpoints along the course. It’s a hostile environment, and on that start line surrounded by military men and super fit running types, I felt completely out of my depth. I was certain I would drop out within hours.
Day one wasn’t actually too bad, the hardest thing was eating. I felt so strange in my body that I just couldn’t stomach food. You have to carry a minimum of 2000 calories per day, and I was managing to eat about 600-700 of those per day. I was constantly afraid that I didn’t have enough fuel in my body to finish the week and threw away 5 of my 7 evening meals at the end of it all. The desert nights were cold, but I was so feverish that I was waking up drenched in sweat, I was so hot. My tent mates put damp towels on me to try and alleviate what we all thought must be heat stroke.
Things got progressively worse, and on day two I woke up and had the mother of all panic attacks. I suppose it was my body responding to the environment and being unwell. I suspect that my head didn’t realise how much danger I was in, while my body was acutely aware! I couldn’t eat my breakfast, I was just sobbing and coughing and panicking. My tent mate Pete is ex-military and tough-loved me out of it. He shouted at me until I started eating, packed my bag for me and put me on my feet.
Day three is mountain day, and I thought my lungs were exploding. My chest was agony and I was furious with myself for ever signing up. I felt as though I wasn’t getting anything from it, I was putting myself through unnecessary pain. I hated myself for being there. More than anything, I was giving myself a hard time. ‘You didn’t train hard enough. You’re embarrassing yourself. You’re not ill, you’re just ill-equipped. This is your own stupid fault’. I was shuffling through the sand holding my chest as if the pressure would reduce the pain.
I was really well hydrated, but I felt confused a lot of the time, particularly at night. The penultimate stage of the race is a double marathon day. Elite athletes will finish before sundown, mortals like me will continue through the night. I tried desperately hard to quit at the start of this day. I was furious at the heat, at the pain, at carrying that stupid bag. I wanted to go home and sleep. Luckily, I was given the most motivating pep talk by Steve, one of the race organisers, and decided to dig deep and crack on. I remember finishing the double marathon day and going to the medical tent. His words will stick with me for the rest of my life, ‘this is the difference between can’t and won’t’. My wonderful tent mate Sam also kept me going with her constant chatter and positivity.
I have never experienced fear like I did that day. Crossing a large expanse of flat and endless black rock, I had an overwhelming sense that something was deeply and dangerously wrong. I was tired and dizzy and so confused. The trouble is, you can’t go on about it because everyone is under so much pressure out there. You can’t be the person complaining and freaking out. I did my fair share of moaning but I did try to limit it so as not to ruin the experience for anyone else.
That afternoon I hauled myself back into camp and to the medical tent. I felt drunk, completely hammered. I could hear the words coming out of my mouth, but I had no recollection of deciding to say them. The doctor cut my blisters off, patched up my feet, and noticed my cough. I had one full marathon left to complete the next day and then I was done. On this race, if you fall down dehydrated the medical team will put you on a drip and have you back out there within an hour, they’ll do anything they can to keep you going. He knew I didn’t want to quit. So he gave me some antibiotics and an inhaler.
The final day was a happy one, I’d met some amazing women from York who had previously rowed the Atlantic together, and we were having some great chats. But it was this day that I started to cough blood as well as phlegm. I assumed that breathing in the sand was irritating my throat, I was poorly and I’d put my body through hell so I deserved what I was getting. I was scared, but I was also too confused to really piece together what was happening.
Crossing the finish line felt strange. I was relieved, but it was anti-climatic. Perhaps I was disappointed because I had intended to travel faster, I was near the back of the pack. My intention was always just to finish and be happy with that, but I think I had anticipated keeping a decent pace. The reality was that I found it all so close to impossible that I had a heavy sense of shame and disappointment.
We spent a couple of days in a hotel after the race, everyone stayed up late partying but I was in bed by 6pm. By the time we got home, I was drained. I had pushed my body beyond what it should have been capable of and now I was paying for it.
I went to work when I got back because I was so afraid of not earning enough, I’d spent everything on the race and couldn’t afford any more time off. But within a couple of days I couldn’t stand up, the tank was well and truly empty. My boyfriend Sean rang the doctor.
A different doctor this time, he prescribed some antibiotics and sent me for an XRay, just to be on the safe side. Within a few hours I’d been called to say they suspected TB. ‘Like the Victorian disease? The one that kills Nicole Kidman in Moulin Rouge?’. The very same. I was sent to chest clinic where I was told my sputum (phlegm) was crawling with TB mycobacterium. I started treatment immediately.
Active TB is treated with very aggressive antibiotics, for a minimum of six months. I was given contact details for a team of nurses who I could ring if I was struggling. There were a lot of side effects to look out for, and they said I’d probably feel quite unwell at first. I was quarantined at home for two weeks, thankfully Sean was allowed to stay because he’d already been exposed to me for so long.
He did everything for me, cooked, cleaned, and continued to work. I was sleeping between towels which he would change in the night, because the night sweats were so bad. I was vomiting a lot because of the medication, and things were generally pretty grim. It was around 10 days into treatment that I found I couldn’t catch my breath at all. The coughing fits were out of control. The doctor organised a room for me at the infectious diseases ward in the hospital.
I was put into an isolation suite, and assumed they would give me something and send me home. But it was found that my liver function was in decline. This can happen with strong medication, the liver can’t cope with processing the drugs and begins to lose function. Thus began an 11 day stint in a very lonely, very boring room, with a special clunky fan to extract my TB breath from the hospital. Nurses would wear fancy oxygen masks when they came in, it was all a bit Ghost Busters. We assumed it would be one night, maybe two, but every day I’d wait for them to send me home, and they’d keep me in. We had to stop the treatment and start with IV drugs instead. An MRI scan revealed that the TB had actually munched quite a large hole in my left lung, and so we had to carefully manage my liver while aggressively attacking the TB. I started a very sad video blog on my instagram of going slowly mad and choosing terrible hospital food from the menu each day, and skyped my mum in Australia every day, ruining her first holiday abroad in 28 years! Eventually, I got to go home, and it was several weeks of bed rest. The nurses visited and called lots which was great, the care I’ve received throughout the whole thing has been incredible.
One of the biggest symptoms of both the disease and the treatment is fatigue. Walking further than 100 meters wasn’t possible at first, and when I started to get up and about it would take me around 20 minutes to cover the distance. My friends couldn’t visit in the first month because I was infectious, and even when I was declared ‘safe’ to be around, I still felt that people were avoiding me. I was a husk, I’d lost almost two stone and our lives had been turned upside down. That’s a scary prospect and I don’t blame people for being afraid of catching it.
But this is one of the greatest issues with Tuberculosis, the stigma that surrounds it. In many parts of the world, TB hits areas stricken by poverty, where overcrowding is an issue. Patients often feel that they’ve done something to deserve this or to give it a chance to take hold. The fact is that it is just bad luck. If you happen to breathe in that bacteria, and you happen to get a bit run down, and it happens to kick in and go for you, is that really something you had control over? No. You were living your life, and you hit some bad luck. I’ve met people on online forums who have had TB of the spine and had vertebrae removed, TB around their brain resulting in major surgeries. It is absolutely treatable, but it is aggressive and it is resilient. In comparison to many I have been remarkably lucky, my TB was susceptible to first-line drugs (some strains are drug resistant and very hard to treat). My treatment was extended because during my tests throughout treatment my lungs were still full of bacteria. The disease had been active for a while so the bacteria had plenty of chance to multiply.
I was diagnosed in April last year and finished treatment in early March this year. The side effects are pretty horrendous. It started with constant nausea. It impacts your eyesight and your hearing. Your skin becomes sensitive to the sun, causing breakouts and unending itching all over your body. And worst for me has been the impact on my joints, they have become increasingly stiff and painful, and my mobility is far more limited than it ever has been. I have since been referred to a rheumatologist for suspected arthritis. I’ve gone from being at the peak of my fitness to being at my very weakest. It often feels as though my body has betrayed me, which makes me feel incredibly sad.
The doctors said it was ok to drink with the medication, but responsibly. For a long time, I didn’t want to, it didn’t appeal at all and I was worried about my liver. I tried some of Sean’s red wine a couple of times, which caused a violent reaction. I’ve missed enjoying a glass of red when we go out somewhere nice for dinner, so that is something I’m looking forward to trying again in a month or so. When I drank, I would go for small quantities of low abv beer, a third of a 3% pale for example. Being on medication has actually been a very helpful part of my moderating journey because feeling unwell has far outweighed any pressure I may have felt to drink. At last, people stopped questioning it, they didn’t argue when I didn’t want to drink. Shame it took life-saving medication for that to be accepted, but baby steps I suppose! It became easier than ever to just say no and have a soft drink. There were a couple of occasions when I was too ambitious and opted for a cocktail or something that I really fancied, and I’ve paid for it with throbbing headaches and feeling absolutely wretched. So if anything, this has taught me to be even more mindful. I’m very aware of how I feel in myself, and can carefully assess how alcohol would affect that. I’d actually recommend pretending you’re on hefty antibiotics if anyone is ever hounding you to drink.
The hole in my lung has closed up now. I still get chest pain, but I regularly take a moment to look back three or four weeks, and I’m still seeing improvements. The pain is less, I have a little more energy, and I’m starting to feel less frightened. I’m not saying that TB is a gift, I’m not that optimistic. But it has taught me to be more aware of myself. I’ve become really good at saying ‘no’ to things because I don’t have the energy I used to. I’m better at prioritising my time and find it easier to step back and put things into perspective. I’ve developed a real fear of becoming a hypochondriac, and am terrified of dying, but I think that’s part and parcel of what happened in the desert and the shock of everything.
Most TB patients don’t talk about the disease, because people aren’t educated around it and can respond badly. I’m hoping that by sharing my experience of Tuberculosis, I can advocate for those people who have had to hide. I infected some of my tent mates, Sean and some family members with Latent TB. They had 3 months of a low dose of antibiotics, experienced no symptoms or side effects and are all fine. Sadly my mum developed active TB after spending the day with me before I left for the race. She is due to finish her treatment in a few weeks and has been such a trooper. There is a lot of guilt that comes with that, and a couple of people have made me feel really bad about it. But the fact is that at some point, someone infected me. I don’t know who (though I suspect it was when I was teaching in China a few years back) and I’m not angry about it, it is what it is. Nobody asks for TB, and you are not to blame if you catch it.
TB is isolating, it is incredibly depressing and terrifying. I’ve been in constant pain for 11 months and that really impacts on your mental health. I’ve had a lot of support from my nurses, people online and on the phone, but my social life pretty much disappeared. TB hit my bank account as well as my lungs, my earnings suffered and it was incredibly stressful. After a while, people stop asking you to do things, because they assume you’ll say no, and the world becomes a little bit smaller and a little less colourful. I’m lucky that I’ve had supportive people around me, from my partner, family and small circle of friends to colleagues at the breweries and the lovely team behind Club Soda.
There is a silver lining to being ill and taking medication. It creates space and time to prioritise yourself without people thinking you’re being flaky, selfish or boring. When something breaks you down, take time to reflect, and then decide what you want to build. I’m going to build legs that travel more miles than I can imagine, and there won’t be any more tuberculosis to spoil it for me!