I first met Anja through the amazing Bad Boy Running community. I can’t really remember when, but I remember thinking this girl is a fucking badass and I like her. I do remember finding out about what had happened to her as she went through treatment, and it was completely unbelievable. We struck up a bit of a relationship through messenger, and I guess have been friends ever since. Long story short, Anja took on the MDS whilst, unbeknownst to her, she was suffering from TB. She has already been through illness, confusion and isolation - three things that are effecting every single person on earth right now. And now she is living through it again. This is a real life story of hope. At no point did she give up, at no point did she let this illness win and at no point did she lay down and let it walk all over her. Anja, I fucking love you - over to you.
WHY MDS?
At the ripe old age of 27 I found myself in the midst of an early midlife crisis. I was working at a brewery under an abusive management system that saw several members of the team crack. I was desperately low, I couldn’t make decisions or focus on tasks clearly. Working in hospitality, you have access to booze constantly, and I noticed I was using this as a crutch. My consumption may not have seemed unusual to a lot of people, but I knew I wasn’t comfortable with it, I was having a beer every day. I didn’t eat, I didn’t nourish myself and things were spiralling downward rather rapidly.
I kept trying to get myself out of the hole but I just couldn’t do it. I remembered my cousin telling me about his adventures running the Marathon Des Sables and I thought, ‘that’s it. A big challenge will force me to change’.
So I signed up, fundraising for Yorkshire Cancer Research. I told everyone, accountability and social pressure are the best incentive for me, I tend to blackmail myself into doing things. I started running along the Leeds Liverpool canal, and weight training.
A messy redundancy-that-turned-out-not-to-be-a-redundancy (otherwise known as a royal shafting) and the breakdown that ensued, turned out to be a blessing in disguise. By Easter 2017 I was finally free. I started freelancing by accident when someone wanted tasting notes writing, jobs gradually started to roll in. I now write about food and drink, work with two breweries and also work with a group who help people to change their relationship with alcohol. I’m very lucky to do what I do.
By winter I was in great shape. I had a PT, loved weight training, and was fitter and stronger than I could’ve imagined. I drank a lot less. Much of my training was done in the snow in Yorkshire and the Pennines, hiking in layers of clothing to try and simulate the heat.
Anja training for MDS at home in Yorkshire.
Mum pointed out that I was coughing at Christmas, but it sort of came and went. Some weeks were fine, some weren’t. There were a lot of winter bugs flying around, so I put it down to that. It was more a recurring irritation than a feeling of being unwell. A couple of months into 2018 it was still up and down. Some days I would feel strong, others I would feel unnaturally tired. I put it down to training.
A few weeks before MDS I went to my doctor, I thought I had a chest infection. She listened to my chest and told me I had a cold, and that it would pass in a few days. She didn’t prescribe anything. She said MDS probably wasn’t a good idea, but by that stage I’d raised over £9k for my charity, and had thought of nothing else for a whole year. It was the one constant and there was no way a cold was going to stop me trying.
THE RACE
Fast forward to the MDS and I was feverish, nauseous, and coughing violently. I was confused, I couldn’t understand what was happening to me. I was genuinely convinced I had a cold, I assumed that I was out of my depth and responding badly to the environment, and that I shouldn’t have fooled myself into thinking this race was possible for me. I gave myself quite a hard time for it.
I struggled to eat, my appetite had vanished and I found myself managing around 700-800 of my daily 2000 calories. I was obsessed with that, constantly aware that my calories in didn’t even come close to calories burned.
Classic MDS shot. Not pictured - constant cough and green phlegm.
I was delirious at night time, roasting hot. My tent mates put wet towels on me to cool me down so I could sleep. I was coughing up green phlegm. After the long stage I remember saying to one of them ‘I feel drunk, I can hear the words coming out of my mouth, but I don’t remember when I decided to say them’.
She told me to go to the doctors tent. I waited outside and kept saying to people ‘I feel weird, do you feel weird?’. The consensus was that I’d had too much sun and had a heat stroke. A doctor listened to my chest and said I had a chest infection. He gave me antibiotics and an inhaler. ‘Great’ I thought, this will definitely clear it up, I’ll feel better by the time I get home.
There was a point where I found myself alone traversing a large expanse of dark rocky desert. I couldn’t see anyone else and I hadn’t seen any crew in a while. It was probably only a matter of minutes, but it felt like hours. I was out of it, terrified. Something in my head shifted from ‘finishing the adventure of a lifetime’ to ‘you’re going to die soon, and nobody will be here to help’. I have never before or since felt that kind of terror, I can’t describe it properly. The pain in my chest was unlike anything I’ve ever felt. I was holding it tight, as though the pressure would help. I genuinely thought it must be lung cancer.
By the final day, I was coughing blood and green gunge. I crossed the finish line with a smile on my face, but I have to say the moment was emptier than I had anticipated. Perhaps I had asked too much of this experience, but I felt strangely hollow about it for months to come. I had some good times and met some amazing people, but the week is certainly marred by confusion and fear.
Anja at the finish line.
When we got to the town I went for a meal with my tentmates. I ordered food, and then sat silently watching everyone eat and drink. I didn’t touch a bite, I couldn’t eat. I felt like I wasn’t in my own body, like I was watching a film. The evening was a little better thanks to hotel aircon, I ate a small meal and went to bed early. I woke up hallucinating, believing my own reflection in the mirror to be a demon chasing me around the hotel room. I crept to the loo hiding from my own reflection.
On returning home, I was spent. The thought of walking was inconceivable. I was waiting for the antibiotics to do their job, but nothing happened. I assumed everyone must feel this tired after such an event. It was hard to tell what was causing everything, I mostly felt confused. Surprisingly, my legs were fine. I felt that my muscles were recovering well from the race. But there was a different kind of fatigue in my body. The night sweats were unbelievable. I slept between towels, and Sean (my partner) would wake me up in the night to roll me over and change them for dry ones. I was drenched.
We managed to get a doctor's appointment, he thought it was a chest infection too, but thankfully decided to xray. It turned out I had Pulmonary Tuberculosis.
Anja on the way home ‘feeling like death’.
DIAGNOSIS, ISOLATION AND TREATMENT
Treatment for TB means taking very strong antibiotics for a minimum of 6 months. My treatment ended up being a few days short of a year, because the bacteria was taking a long time to die. Within two weeks of finishing the MDS I had lost two stone in weight. As soon as you are diagnosed, you have to be isolated at home for a minimum of two weeks, to avoid infecting others. I made a spreadsheet of everyone I had come into contact with (for a period of 8+ hours in accordance with regulations), and they were all tested. Only my darling mum got active TB from me, and they caught it early. However her recovery from the medication has not been as good as mine, and I feel very guilty for that. Several others had latent TB and had a 3 month treatment on a low dose with no symptoms or side effects. All are absolutely TB free and fine now.
The drugs for TB come with a host of nasty side effects, from tinnitus to violent sickness, itchy skin, bloating and debilitating joint pain. Two weeks into treatment I experienced one of the rarer side effects of the drugs, a drug induced ‘liver injury’, basically my liver couldn’t cope. I was placed in an isolation unit for 11 days as I was still very infectious, the doctors had to balance attacking the TB with getting my liver back on track. It was during this time that a scan revealed a 5cm hole the TB had munched in my lung.
That’s a hole in Anja’s lung then….
Isolation was difficult. I had come home exhausted but with a sense that I was unstoppable, I’m sure many people feel that after such events. I had achieved what a year ago had seemed impossible. Sure, I didn’t break any records, but I sent a goal and I reached it. When would I stop? What was possible? Those thoughts dissipated rapidly. My mood was very unstable. The unknown was the worst part. When I first went into the unit I thought I would be out within 24 hours. Every day I waited for them to let me out, and day ended with disappointment.
The staff wore ventilated masks to come into my room. One particularly low afternoon I had a meltdown at a doctor because I didn’t know what anyone looked like. She left the room, took off her mask and stood at the window so I could see her face. It was like something out of a very sad B-movie, but I appreciated it more than I managed to express at the time.
I tried to keep things as normal as possible in the room. I couldn’t stand for longer than a few minutes, but I made sure to get out of bed and dress myself each morning. Sean dropped off clothes, books and puzzles. I Facetimed my mum every day, she was in Australia on her first holiday in almost 30 years… classic timing! I helped the cleaner as much as I could, I felt guilty for her having to come in and mask up.
I thought I would learn a language or do some work, but mostly I slept and watched films, and for a long time I felt guilty and angry with myself for not being productive with that time. I kept a video diary on my instagram, partly to entertain myself and to avoid having to provide numerous updates to people, and partly because I knew I would need to look back at this time in the future. I still revisit it now when I need reminding of how far I’ve come.
Just your friendly belly injection man…..
After a few days, they let me go outside with Sean to sit in the fresh air. It was a beautiful day and I remember the feeling of the sun warming my flannel shirt. Little things like that felt important after being alone indoors for over 3 weeks.
Eventually, I came home, and spent another week or so in bed. My legs had turned to spindles, and walking was exhausting. I tried to meet Sean at work one day and a walk that would usually take 4 minutes took over 25. I had to keep stopping to catch my breath. It took about 5 months to be able to walk at my normal pace without having to stop frequently. My joints felt like sandpaper and fire, so movement was painful.
One of the worst things was the financial impact. I worked part-time for a brewery but other than that I freelanced. In total I lost almost 3 months of income, and that flattened me. It took a full year to recover financially. I’m quite a proud person, asking for help was very challenging.
Running has been emotional to say the least, because I can’t. I’m asthmatic and take medication daily as a result of what happened. I have some scarring in my lungs, and I still find if I push too hard it causes a lot of pain. My expectation of myself is that I should be able to run miles, and that’s not my reality any more. I kept trying and hurting myself and getting upset. So my focus has been on finding new ways to train. I’ve been going to Lagree, which is the perfect conditioning for runners, and I also took up pole dancing, by far the most challenging thing I’ve ever done in terms of fitness. I am currently running 3km stints regularly, and intent to increase distance over time. I’ve gone right back to the start to try and get back to a good place with it.
One days drugs.
AFTERMATH
It’s hard to put all this in a blog post, it feels like there is too much to say, if you’ve made it this far, well done! I know some people will think I was irresponsible, but I know that I wasn’t. I covered my face and kept my distance from others, and I was repeatedly told by medical professionals that I had a cold. I think that anyone else in my position would have done the same. The situation escalated too quickly for me to understand what was happening, one week I had a niggling cough, the next I was hallucinating with night sweats and coughing blood.
I’ve struggled mentally since finishing treatment. Once you’re done, that’s it, no more checkups. I find it impossible to shake the fear that something deadly may be growing inside me without my knowing anything about it. Any pain or cough scares me, because my learnt experience is that seemingly trifling symptoms are in fact the worlds most deadly infectious disease. So I wrestle with that regularly.
As a result, I struggle with panic attacks, particularly when air quality is poor. The tubes are particularly challenging for me, I’m very glad I don’t live in London! I’m working hard to combat this, and I think I’m winning.
On the plus side, life had to slow down. I have a much clearer image of what is important to me, and who deserves my time. Some people weren’t there when I needed them most, so I’ve cut them out, and life is better for it. I feel more uncomfortable socially these days, it took a long time to adjust to being around people after isolation. Even when I was able to go out, simple things felt too tiring. Even sitting on a seat without a back was exhausting, and I was too tired to follow conversation and focus in loud places. So my social life looks very different these days. I used to be quite confident and now I find myself feeling awkward a lot of the time. But again, I don’t think that’s such a bad thing.
“Frances Davies and Niki Doeg, two amazing ladies who I spent a lot of time with. They did the Talisker Whiskey Atlantic Challenge. Fucking unbelievable, they have a documentary and a book, both called Four Mums In A Boat, highly recommended”
I’ve always been insecure, but I have no confidence in how I look any more, I do feel like I have lost any sort of glow I may once have had. I cut off all my hair when I started treatment because it became lank and I didn’t have the energy or strength in my arms to brush it. I find it very hard to see images of myself now, and I focus a lot (too much) on comparing myself to how I looked before being unwell. I need to work on that.
In February, as news of Covid-19 was met with ‘it’s just a flu’, I felt like the guy in the disaster movie that’s screaming for people to take action, while everyone thinks he’s crazy and carries on as normal. I think we learnt a lot about how all this stuff works as a result of our experience with TB. The tracking and tracing of every case, the testing of everyone around me, the month of isolation. If TB patients refuse to adhere to treatment, law states that they can be detained, as they would pose such a risk to public health. So it made sense to me that a new disease was being treated so seriously by the WHO. It frustrated me that it took so long to filter down to the general public. So much damage has already been done because people were too busy laughing and thinking only about how they would be affected.
It put me in a very dark place for a while, I couldn’t cope with the fact that people were being cold and selfish. But in my own selfishness I was shaken by the idea that an infectious disease would impact our lives again, that I may have to isolate again. I was also afraid of the idea of becoming unwell, and of the symptoms being similar to ones I have experienced before. I started having bad dreams about waking up in the room struggling to breath.
It took a few days to process, we face a nightmare that I feel I’ve already lived, it’s uncomfortably familar. But I’ve got my head around it now, I know that I can only work with what I can control. I am not unwell, and if I follow the guidelines I will remain healthy. My family are sensible and have been avoiding unnecessary outings for several weeks. I can still work (as long as my remaining clients can keep me - I’ve lost some already), and I can tick off all the things I couldn’t do last time. I can plan for this, and I know what to expect.
“Photo taken about 3 months into treatment when mum and I went on a picnic for her birthday. I’d gained about a stone in this image. Mum was also on treatment and it took us all our strength to carry our cool box to the river…”
I’ve been playing my piano every day, deep cleaning and decorating. Batch cooking. Doing yoga, running up and down the stairs with a weighted backpack. Doing home workouts. I find the internet is too noisy at the moment, and I’m suddenly in 1000 group threads that I don’t particularly have the energy for. It’s nice that people want to be connected, but at the same time it makes me laugh a bit that some of these people didn’t speak to me once when I was isolated alone. It took the entire world to be isolated together for them to show or require some empathy. It’s hard not to feel bitter about that, and I know it’s something I need to let go of.
More than anything, I’m reminded that there are people who live like this all the time, whether that’s due to disability or illness or financial strife. I’m just hoping that when we get to the other side of this we remember what was important to us in these times, hopefully taking time to check in on vulnerable people will outlast the pandemic.
I don’t think I will ever stop being grateful for my health, I feel that every single day. Exercise brings me endless joy, because there was a time when I couldn’t picture being able to use my body the way I do now, and I’m excited to be planning more adventures.
I intend to go back to MDS in 2022, and to run it with two fully functioning lungs. Above all, I am full of hope and a newfound contentment. I have learned to be grateful for the small things.
Anja works as a freelance writer. You can grab her on instagram here or LinkedIn here.
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