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Finishing Marathon Des Sables with undiagnosed TB: Anja’s story

Club Soda’s own Anja Madhvani tells her story about being diagnosed with pulmonary TB (Tuberculosis).


March 24th marks World Tuberculosis Day. I didn’t know that until I was unfortunate enough to catch Pulmonary 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 given in school were largely ineffective, sadly you can still catch TB even if you had the jab. 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.

I wanted to share my experience with you to raise awareness about the challenges facing TB patients, and to tell you about how TB treatment also changed the way I drank. I think I’ll take you back a little, and tell you about what kind of drinker I was.

Always some beer

I’ll take you back to 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 could no longer 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 could 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. I still struggle to manage stress and anxiety today.

Training

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 necessary changes 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 a world of 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. 

The cough

Around Christmas time of 2017, I started to feel a bit 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 repetitive strain injury from playing the violin that I’d struggled with over the years.

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’d trained and planned obsessively for this event for over a year. Kit had consumed every spare penny, I’d fallen asleep every night thinking about which dehydrated foods to take, how to make my bag lighter how to balance strength training vs time on my feet. There was no way that I could back out. My motivation had been to prove something to myself, and to others. 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, 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 anxious about the race.

The Marathon Des Sables

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 types and super fit running folk, I felt completely out of my depth. I was certain I would drop out within hours.

Day one wasn’t 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 stomach about 700 of those per day. I was constantly afraid that I didn’t have enough fuel in my body to finish the week, I was doing mental calculations of energy in vs energy out and this was increasing the feeling of worry. The desert nights were cold, but I was so feverish that I was waking up drenched in sweat, I felt like I was on fire. 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 thought it was a combination of my body responding to the environment and being a bit 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 amazing tent mate Pete 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 was 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 fist to my chest as though the pressure would reduce the pain.

Digging deep and cracking on

Pictured: Me & the wonderful Sam

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 to crawl 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 an incredibly motivating pep talk by Steve, one of the race organisers, and decided to dig deep and crack on. 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 ground having finished my water, I had an overwhelming sense that something was deeply and dangerously wrong. I was tired and dizzy and confused, and the voice in my head wasn’t worrying about finishing the course anymore, I just had this overwhelming sense that I was in physical danger. 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 think I also downplayed it because I didn’t want to ruin the experience for anyone else and I didn’t want to embarrass myself if there was nothing wrong with me.

That afternoon I hauled myself back into camp 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, and I felt really relieved knowing that I’d start to feel better soon.

Crossing the finish line

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. I was upset with myself, 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. I had enjoyed my week, there were plenty of laughs and incredible sights, but it had been marred by this deep fear that something was terribly wrong with my body, and that I wasn’t good enough.

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. I was sleeping between towels because the night sweats were so intense, my boyfriend Sean would roll me over after a few hours to change them because they were soaked through. He convinced the doctors receptionist to get me an emergency appointment.

 

TB Diagnosis

A different doctor this time, who prescribed some antibiotics and sent me for an X-Ray, 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.

Pictured: My medication

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 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 wore 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, which was why I’d been so much pain in the desert. We had to carefully give my liver chance to recover, whilst still 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 received throughout the whole thing was incredible. Our NHS is a remarkable service.

The stigma

Pictured: An aerial view of the hole in my lung

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 breathe in that bacteria and it happens to develop into active TB, you can’t control that. 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.

Easier than ever to just say no

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 wine a few months in which caused a violent reaction. I missed enjoying a glass of red when we went out somewhere nice for a dinner. On the rare occasions I drank, I opted for small quantities of low abv beer, a third of a 3% pale for example. Being on medication was actually been a very helpful part of my moderating journey because feeling unwell far outweighed any pressure I may have felt to drink. People stopped questioning it, they didn’t argue when I didn’t want to drink, so 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 paid for it with throbbing headaches and feeling absolutely wretched. The experience taught me to be even more mindful. I’m now very aware of how I feel in myself, and can carefully assess how alcohol will affect that. 

Two years after finishing TB treatment

I was diagnosed in April 2018 and finished treatment in March 2019. The side effects were 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 was the impact on my joints, they became increasingly stiff and painful, and it took a couple of years to truly regain my mobility. I went from being at the peak of my fitness to being at my very weakest. It often felt as though my body had betrayed me, which made me feel incredibly sad.

The hole in my lung closed up. I still had chest pain even a year after treatment. I was diagnosed with asthma (common after TB) and I take tablets and inhalers every day to manage that. 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 and judging how much energy I have and how much I can take on. I’m better at prioritising my time and find it easier to step back and put things into perspective.

A year after treatment I was still weak and experiencing the aftermath of it all. My gut health was dreadful, I would double in size by evening each day due to bloating and I regularly had food poisoning and stomach problems. It also took a long time for my skin to recover and for my hair to become healthy again. Overall I felt that I had lost who I used to be, I didn’t recognise the person I saw in the mirror, and I felt that I had been robbed of years when I should have been my most vibrant self. I became very detached from my body. I also developed health anxiety, and was constantly convinced that I could drop dead at any moment. This resulted in debilitating panic attacks, and avoidance of settings where I know air quality would be poor or where I might come into contact with people. Therapy has been key to solving that. Two years on and I’m happy to say I am feeling like me again.

Nobody really prepares you for life after treatment, and every patient I’ve spoken to has experienced similar mental health issues. If you are recovering from any serious illness, all I can say is that it truly takes time, patience, and a lot of self care. Don’t give up, you will get there. I used to regularly take a moment to look back three or four weeks, and that allowed me to see the little improvements. A big breakthrough day was when I climbed the steps on the escalator at the train station instead of standing stationary on it, I still remember how huge that felt. I sort of look at my body and my ‘self’ as being a team of two halves now. I imagine my body as a piece of machinery, and I think about how I take care of it. I want to enjoy a long and comfortable life in this vessel. 

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 has now finished treatment, but sadly hasn’t bounced back as strongly as I have, likely due to her age. There is a lot of guilt that comes with with that. But the fact is that at some point, someone infected me. I don’t know who, and I’m not angry about it, because there is no point in being so. Nobody asks for TB, and you are not to blame if you catch it.

Prioritising yourself

TB is isolating, from the time alone when infectious, to being unable to participate socially due to fatigue or folk being afraid of you. 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 was lucky that I 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 now building a body that will travel more miles than I can imagine, and there won’t be any more TB to spoil it for me.

If you want to read more about how I have changed my drinking over the years, check out this blog post. And if you are reading this and are unfortunate enough to be dealing with TB yourself, I recommend joining this fantastic support group on Facebook.

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