NOTHING LEFT TO GIVE
by Hannah Nolan
It’s the 12th of May 2013 I’m the 4th female across the finish line of the Kildare Marathon. 26.2 miles of physical and mental exhaustion but as I discover I was only 1.5 minutes behind a podium finish I was determined more than ever to keep training and keep pushing to my limits. I felt like I was on the way to something even better, that even in the great shape I was in I still hadn’t hit my peak and there was more to come. But little did I know that a few weeks later, a seemingly insignificant bite would change my life completely.
26th May 2013 – 2 weeks after my marathon I have taken some recovery time and am off for a steady 15 mile run. As usual I train with my coach up in Avondale house in Rathdrum for the Sunday Long run. A lovely forest area with soft pathways and plenty of different loops for running. I am still a little tired after the marathon but enjoy getting out and head home afterwards to shower and change. As I change I notice a small bite on my ankle but think nothing of it.
29th May 2013 – I go out for a run, it is supposed to be a speed session but after I start my ankle is sore and throbbing. I decide to turn around and cut the run short and as I return to my car I pull my sock down and see that my ankle is swollen. It was hot to touch and since I was just outside the Dr’s surgery I popped in on the off chance someone was available to take a quick look. I saw the nurse and she made a note of the bite and gave me some antibiotic cream and also some oral antibiotics to take only if it didn’t improve after 3 days. After 3 days it seemed a little better so I continued on life as normal.
3rd June 2013 – It’s the Flora Mini Marathon 10k race. It’s a massive event with almost 50,000 women taking part. I have qualified for the Elite section of the race, I am excited but nervous. I get to walk into a different entrance and stare back at the huge crowd behind the start line, its amazing. As the gun goes the elite section are let off. I try and steady myself into a pace but even a kilometer into the race the body doesn’t feel good. I am sweating, but not in the usual way…..more of a clammy sweat. I can’t seem to catch my breath and there isn’t that extra “gear” deep inside my body that I can usually bring out. At the half way stage I feel like I am done for. Every step is painful, and for me 10k would be considered a “short” run so I have no clue why I’m feeling so bad…….perhaps it is too soon after the marathon, I have no clue. As I get closer to the line I don’t even have the energy for a strong finish and I finish much much slower than I had set my sights on. Usually a few minutes after the race I’ve recovered, but this time I felt awful. I felt ill. I leave as quickly as I can and call my husband to tell him I must be getting sick.
I take a week or so out feeling slightly fluey, a mild fever and sweats and general fatigue. After a week or so I return to running and 10 days after the mini marathon disaster I prepare to run another race. My family come to support me as usual and I set off on my way. Once again in the fairly early stages I feel like there is nothing in the tank, my heart is beating so fast I can’t breathe. I check my Heart rate monitor and my pulse is way faster than it should be, and my pace much slower than normal. As I come towards the finish line I am beaten and exhausted. My husband usually walks down a little from the finish line to see me come in, but he ended up walking back thinking he’d missed me as he could see people he knew finishing who I would usually be way ahead of. After I finished he asked me what happened? And all I could say was “I don’t know” and I started crying. I knew something was wrong with my body and I didn’t know what.
The dates after this become a bit of a blur. Shortly after the second failed run the tiredness is still overwhelming. I go to the Dr who tells me I have a “viral infection”. I try to carry on as best as I can with the tiredness and hope it will go away soon.
A few weeks further on and I’m still trying to run. Every run I do I’m getting slower and slower as I struggle to catch my breath and my heart rate is flying up higher and higher. Even after rest I’m now struggling to catch my breath a little bit. I return to the Dr and once again I have a “viral infection”. I take some more days out and try and continue again. I’m trying to push through, trying to remain positive. I go back to the Dr and get my bloods done. There HAS to be a reason I feel so tired. The bloods come back and my Dr calls to advise me I have the blood results of a race horse, that she’s never seen results so healthy. I go for a run, I tell myself clearly it is all in my head….that there is nothing wrong with me – its my mind being weak. I get to a mile and I think I feel okay, I have a silent cheer that it was all in my head after all! But another half a mile in I feel like I’ve been punched in the tummy and winded. Every step my legs feel like lead and I can’t breathe. I turn around and walk home. It feels like the longest walk of my life as my legs feel like they have a life of their own. My body doesn’t even feel like it belongs to me anymore.
I’m back in bed. I feel so tired. I get breathless over nothing – but then I’ll have a day where its not so bad, and I think maybe it is just a virus after all. I start getting shoulder pain at work (I run my own fitness studio doing personal training and fitness classes) and weakness where I can’t lift the weights anymore. I start to use lighter weights and after one class on a Monday morning teaching an active retired group I cannot even lift the lightest weights above my head. One of the ladies tells me I look very pale and ill, and that I should go and see the Dr. I go back to the Dr and because of the shoulder weakness and neck pain I am advised to go to the Physio. I go to the physio and hope that having it worked on will help. It doesn’t. The weakness continues.
I am at this stage still having good days and bad. I have different symptoms coming and going but none that seem overly consistent. I train as best as I can when I can and when a Half Marathon comes up in early September I decide I am fighting fit and well. In my head I am unstoppable. I want to win – I believe I can win! As I line up on the start line I feel relatively normal, although at this stage I think looking back it was just a new kind of normal – like I’d gotten so used to feeling bad, that a day where I felt less bad somehow seemed “good”. I started the race and felt confident but once again after a few short miles I didn’t feel good. My breathing was shallow and I had an awful stitch pain in my right side. I tried to stretch it out but it didn’t work. For the first time in my life I did the unthinkable and walked in the race. The pain was bad and I continued to walk and run. People were running past me and I didn’t even care anymore. I got home and reviewed the race results, the winning time would be slower than my normal time and I knew I should’ve been able to win that day. I went to bed early, exhausted.
After a long sleep I woke up feeling like Id been hit by a bus. I was lying in bed and I felt like I was paralyzed. I could barely move, every part of my body hurt. As I struggled to sit up the stitch pain in my right side seared through me. I tried to call my husband but no sound would come out. I couldn’t breathe, I could barely move. I tried to use the wall to help me up and finally got to my feet. I used the walls all the way down the hall to help myself get into the front room to where he was. When he saw me he helped me sit and he called the Dr, she said to come down straight away. I went in and she gave me a check up. My oxygen levels were low and that coupled with the pain in my right she believed possibly I had managed to puncture my lung during the race and handed me a note to go to the hospital. I arrived at the A+E and they took all my details. Bloods drawn, oxygen levels still low and when they examined me I nearly kicked the Dr as he pressed into my side. They ruled out a punctured lung pretty quickly but were concerned it could be gallbladder. They weren’t really sure why I was struggling to breathe, saying possibly if I had a gallbladder infection it could be inflamed and pushing up on my lungs and admitted me for further testing. The next morning I had a scan. There was no issue with my gallbladder. Another Dr came into me and introduced himself and then after examining me I also had pain in the same place on my left side. He said “you are a little mystery aren’t you” and then left again. Sometime later a nurse came in and hooked me up to some IV antibiotics, he said I probably have an infection of some sort so they would give me the antibiotics just in case. I was still struggling to breathe. I tried to walk to the shop and felt dizzy and unsteady. I didn’t know how it had come to this, I was weak as a kitten. I saw specialist after specialist. Nobody could seem to determine what was wrong. I was on a nebulizer and they started me on steroids to try and help the lungs. As it was coming to the weekend I was moved up to a different ward. They continued to test and I had a full body MRI scan. Once again…..nothing.
After a week another Dr came in and said I could be discharged and that I had Adult Onset Asthma. I was confused, I didn’t know how that could be true……I was a distance runner, I had never had a problem with my breathing. They decided that because my brother had asthma as a child it must be in the genes and I’d just developed it now. I was given a course of steroids and inhalers to take home.
I continued on and day by day I felt worse than ever. (at that stage I had never heard of Lyme disease and I didn’t know that steroids are the WORST thing you can take – the steroids were accelerating my symptoms). I returned to the A+E department and saw one of the same Dr’s, he said I was on the strongest inhaler possible and that he didn’t understand why it was working – but my oxygen levels were fine and there was no need to keep me in. I left in tears, but was almost too tired to cry. There was nothing left to give.
I continued on, I felt worse and worse every day. I started fainting and getting tremors in my hands. I couldn’t lift my hands over my head let alone a weight so I started changing the way I did my classes just to get through. Some days I had to arrange cover as I was just too weak to stand up. Most days were spent in bed. I was too tired to get up. I would wake up and go to work for 1 hour, teach a class and come home and go back to bed. Go to fetch the kids from school and come home and go back to bed. My husband would cook dinner and as I sat there staring at it, too exhausted to eat he would say “please don’t”……he knew I was about to cry again because I was too tired to lift up my fork and eat. I felt physically sick with the pain and exhaustion of even trying. Crying felt like the only thing I could do.
I started getting awful headaches. Headaches so bad I used to hit myself on the head to ease the pain. I felt like I wanted to get a drill and screw a hole in my head to take away the pressure and the pain. I even tried taking some of my husbands pain medication, a dose far too strong for my low body weight – but even that didn’t take away the pain. I returned again to the Dr and was told I probably had depression. As I struggled to walk home my running coach rang to see how I was. I told him the Dr thought I was depressed……he told me I needed a second opinion “people like you don’t get depressed Hannah, you don’t have the time, for what reason would you have just dropped everything and become depressed…..I think you need a second opinion”. I thought about what he had said and knew deep down he was right. I had the world at my feet, running was my life – I would never have just woken up and decided to feel like this. But at that point I felt powerless.
As I got worse my husband had spoken to my mother and she flew over to help out with the kids as I was unable to function much. I was either lying in bed or on the sofa. Getting to the toilet was a mission as I either needed help standing or had to hold onto the walls to get there. I couldn’t stand in the shower and my shoulder pain and weakness so bad that I couldn’t lift my hands up to wash my hair. My 4 year old daughter Chloe would come into the bathroom and play “hairdressers” as she shampooed and rinsed my hair whilst I sat in the bath. When my mother arrived to our house from the airport I was lying on the sofa. I could hardly lift my head. My headache was so bad that day and she was horrified to see me in the state I was in – to her it was obvious as she hadn’t seen me in a few months, I guess when you live with it daily it declines so gradually it perhaps isn’t so noticeable.
She insisted I go straight to the Dr. We went down in person, my mother said once they saw how bad I looked they would be sure to see me. The receptionist advised that they only had a locum in that day, but that she was very good with headaches so would be good to see her. I waited and went in to see her. She went through my headache symptoms and asked about my other symptoms, she scrolled through my notes from the last few months and after me listing symptom after symptom she asked “lets rephrase the question – when did you last feel good”. That was an easy question for me to answer….. “May 12th when I finished the marathon”. She scrolled back further in my notes and then said “ah ha! There it is!”. I had no clue what she was talking about, but she explained that all my symptoms sounded like Lyme disease and as she had gone back in my notes towards the last time I felt good she found the proof she needed which was that day I came to see the nurse with the bite on my ankle. At first I didn’t really remember the bite but then as I cast my mind back I remembered the throbbing and me showing my class members my swollen ankle and commenting about how big it was. She ordered blood tests and I went home and immediately went home and started searching up Lyme disease on the internet as I had never heard of it.
With a few short searches I came across the Tick talk page and started reading up on the symptoms and posts. I asked where I could find a Dr and was given a name to an Infectious Disease consultant in Dublin and at that stage I felt like I had nothing to lose so I emailed him directly. I gave a brief description of my running background and where I had been 5 months ago and where I was now. T my surprise and relief he had an appointment for me the very next week. I snapped it up, I didn’t care about the money – at that stage I wasn’t living anyway so this was a chance.
I went in for my appointment and he went through my long list of symptoms and also my Garmin sports watch notes that I had kept from every single run detailing my symptoms and decline, increased Heart rate data etc during my runs. He took my bloods and said basically what my running coach had said the previous month “someone like you doesn’t just turn around and decide to be sick”. He said that he was 99 percent sure I had a bacterial infection from the bite. That he would start me immediately on the correct antibiotics, that it would be a few weeks until results came through but if I improved on the antibiotics that was a sign itself that I an infection. He said “if it walks like a duck, looks like a duck and quacks like a duck – its probably a duck”. I left feeling for the first time like somebody believed there was something really wrong. I had started to believe I was depressed, that it was in my head……but now it felt like there was a reason.
I started the antibiotics. I had a terrible herx reaction (where the symptoms get worse after taking them due to the bacteria dying off) but people in the tick talk group helped to reassure me that was normal. After 2 weeks the ID Dr rang me to see how I was getting on and I told him I didn’t want to speak too soon but I felt slightly better and my tremors had gone and various other symptoms had lessened. He said that was good to hear but he also had results and that the reason I felt so bad was that I had tested positive for Spotted Fever Rickettsia. He would continue treating me and we would take it a few weeks at a time and change the medication if needed. I hung up the phone and screamed with joy. I suddenly had so much energy flowing through my body, the adrenalin pumping through – it sounds so silly but I was just SO happy I was sick. My fear was that he would ring and say there was nothing wrong but there it was……I WAS SICK!!! He said that even if my bloods had come back negative he would’ve continued treatment because I was responding – so if I was responding to treatment it was because I had something. The fact I had shown positive for an infection was just the icing on the cake for me mentally to feel like there was a reason I felt so ill.
After a few months I felt like I was perhaps getting back to “normal”. I think I felt so much more improved from where I was that I felt I was better……..but in reality I was just better than my worst – and still quite a bit worse than my best. I made the decision to come off treatment but kept in touch with the Dr to see if I had any returning symptoms. Within 4 weeks of coming off treatment I had deteriorated again. I called the Dr and I went straight back onto treatment. This time however it wasn’t seeming to work. He advised that because I’d had a break they may be resistant so he added in a second antibiotic. After a few weeks I was starting to see much better improvement and was even able to start running again. I continued on the treatment and getting back to some sort of normal, I couldn’t believe how well I was and by April 2014 I ran the County Road Race Championships and won and got a new personal best to boot. I felt like this was it now and I was on my way up.
Once again I came off the antiobiotics. I returned to training. A few of the members on Tick Talk facebook page urged me to keep an eye for symptoms as it was such a quick recovery they were concerned. A month or so down the road I was starting to get fatigue creeping in, but because I was training again I just pushed it to the back of my mind and told myself I was imagining it, over reacting because of my previous experience. I continued to train. Towards the end of my training plan I was unable to complete a long run and my running partner had to run ahead of me to go and fetch his car to bring me back…….but I really was unable to face reality that it had never left my system and I was becoming worse again. As I flew over to the UK for a race I was convinced I was fine. Nothing wrong, I was strong. But a few days before the big race the familiar breathing difficulties started. Still unable to accept it was the infection returning I told myself it was the usual cold and chest that marathon runners often get before race day. I saw a GP in the UK and advised I had a big race and I needed the chest to be clear. She gave me steroids and although I knew it is was a return of the infection they were the worst thing to be taking – I stupidly ignored that inner fear and took them anyway.
Lining up to the start line I felt fine…….but right on cue in the first mile I knew, I knew it was back…..I knew I’d messed up taking the steroids and I knew the race was already over before it had even begun. About 5 miles in I dropped off the pace group I was in, no way in the world I could hang onto them even at that stage let alone last the full 26.2 miles. I slowed right down but my heart rate would not drop. Even at close to walking pace it was 170 and then flying up to 180 – 190. I knew it was over and I knew it was back. There was no turning back on the course, but I knew I could continue and complete the Half marathon route. At around 8 miles I stopped on a bridge and asked a spectator if I could borrow their phone. I called my Dad, I was never so glad to remember a telephone number in my life. As he answered the phone I said through broken tears that I couldn’t run……that I was going to finish the Half marathon but not do the full so he could meet me back at the finish line. As I gave the phone back to the man I was still crying…..another man said to me “come on, look how many people are behind you keep going”……..I was so distraught all I could say was “yes but look at how many people are in FRONT” – he must’ve thought I was an awful stroppy person, but in my mind I’d gone there to finish at the front and now I was right in the thick of it absolutely devasted, and also knowing that I was sick and didn’t know how I could get through it all over again.
I finished the race and I cried a lot. I went back home to Ireland and immediately called the Dr. As it had been a few months since treatment he started me back on 3 different antibiotics to give me a chance to really kick it this time. He explained because I had stopped and started treatment that the bacteria may be more resistant. Likely I had done too much too soon also. So a year down the road, October 2014 I restarted treatment. He advised it could take 18 months, and that was really all the time I had, if I wasn’t better within that time it may never get better. This time the treatment regime was bad. I felt much much worse than I’d ever felt before and I didn’t seem to be getting better like I had done before. It was taking a long long time. By the time 2014 ended and 2015 started I didn’t know where I was at. Even now I do not remember very much of 2015 at all. It feels like a year of my life that was just gone. Back to my daughter washing my hair, back to having no energy to eat. Back to lying in bed not knowing when I’d feel better. By now my blood tests were coming back with small changes. Low white blood count, wonky thyroid results and vitamin D and ferritin deficiency – but on the whole they were still fairly good. I was referred to a thyroid consultant but she advised that my thyroid results were not a result of thyroidism, that it was what she called a “sicky thyroid” – that it was something else causing the thyroid results and not a problem with the thyroid itself. My heart rate worsened. I’d get a racing heart and then very high readings when I was barely exercising. I saw a cardiologist and had a stress test, a holter monitor test and finally an angiogram – all were clear.
I was frustrated, I felt like the antibiotics were making me worse not better. I didn’t know how I could ever feel better again. At this stage I hated runners. I hated seeing people I knew running. All it did was remind me how utterly disabled I was by this disease. I felt like I’d be lucky if I could walk again let alone run……it all seemed so unfair. I was becoming bitter and irrational – how was it fair that these people were able to run along the road so happy and carefree and here I was trapped in my own body. It consumed me. Every night I sat on my bed and cried……..I didn’t want to go to sleep because I knew I would wake up and have to live through another day, it all seemed too much to bear.
One day I was lying in bed and I wasn’t sure if I was awake or asleep. I couldn’t move my body, I felt like I was rising out of my body and looking at myself on the bed…….in that moment I thought I might be dead, I tried to scream but nothing would come out – I was scared and I didn’t want to die. And then I suddenly gasped and took a big breath in and I was able to sit up. I still wasn’t sure if I was asleep or if I’d actually died. But I knew that I wanted to live, so I continued on with the treatment.
By August 2015 I still felt awful, I was nearly a year into this final treatment and I honestly didn’t think there was hope any more. I was on 4 different antibiotics and I really didn’t think I could physically take anymore. In desperation I posted on the tick talk facebook group. I said it was hopeless and how bad I felt. Many people commenting, supporting me and telling me not to give up – one comment stuck in my head “there is always hope Hannah”. I took as much strength as I could from the comments, knocked back my tablets and cried myself to sleep. I continued every day telling myself to think of my future self……that if I don’t continue to push through my future self will be looking back at me now screaming at me to continue through this hell. I wanted my future self to be happy and not looking back with regret at the one chance I had to get through this. Somehow I kept going.
Just over a month after this crisis moment in the September I woke up once morning and as I opened my eyes it was like I was alive. I didn’t feel like I’d been hit by a bus. I didn’t feel tired, I wasn’t achy. I just felt…….well, I felt normal. It was the strangest feeling ever, but wonderful at the same time. I felt like it was a sign to keep going. After lots of research and talking it through I knew that many patients continued treatment for 3 months after all symptoms had gone. So this was now my new focus. I still had good days and bad after this lightswitch moment in September. I wasn’t suddenly cured – but I was certainly very quickly much better. Every day improved and then I might take a step back but then improve again. I was in touch with another member who’s daughter had been treated with high dose vitamin D, as I had vitamin D deficiency I started taking the supplement. In the December we were due to go to Australia, as it would be sunny the Dr advised that I couldn’t take one of my medications in the sun so I changed medication for the trip. I got to enjoy the sunshine and I even managed to go to a few workout classes and walk and one day even jogged around the block. I soaked up as much vitamin D as I could (perhaps getting burnt on bondi beach wasn’t the smartest move but maybe that was the turning point? Who knows)
By the January I was feeling pretty much symptom free so I started to think about the scary possibility of coming off the antibiotics. I was 15 months into treatment so I figured by the time I weaned off the antibiotics it would be 18 months and that would be my lot anyway. In the February I came off one, March another and then in the April of 2016 I took my final antibiotic. 3 years since I had been bitten – 3 years of my life gone. I didn’t know what to expect and of course I was nervous, waiting for symptoms to return. I set myself little milestones. First was 4 weeks, then 8, then 12 weeks and once I hit 12 weeks I told myself if I could get to 6 months clear I’d feel more confident. Once I got to 6 months clear I still felt nervous it could return so I said if I could get to 12 months clear I would be happy.
As I hit 12 months clear, pretty much to the day, I found out I was pregnant. It was a miracle – my hormones had been checked before and I had been told it would be unlikely to fall pregnant with my levels the way they were. And yet exactly a year clear of medication I was pregnant. It was wonderful, but it was also scary. I feared that the pregnancy symptoms would cause a relapse or that I would pass on the infection to my child. But with no symptoms returning I enjoyed the pregnancy and really treasured it. In December 2017 my beautiful 3rd child Kyle was born. He was perfect.
As I write this it is now May 2020 – my facebook memory has just popped up with my race picture from May 2013 and the last time I was “normal” before my life was turned upside down by an infection I never knew existed……a small insignificant bite that I didn’t even remember having until reminded by the Dr report. After fighting for my life for 3 years I slowly recovered. It took a while, even after all symptoms had gone my body had taken a battering from the drugs and lack of exercise. I slowly had to build up my system again. I still was unsure for a while if I would ever reach the same level again. 7 years on from that bite what I can give is hope. That one line of support still sticks in my mind “there is always hope Hannah”. And there truly is. I have been blessed with another child (who is now 2.5 and been sick once in his life – healthy and boisterous) Since my recovery I’ve completed a triathlon, a few duathlons, a few marathons – I am back running 70km a week, running my classes and living again. It was once a dream but is now a reality. THERE IS ALWAYS HOPE.