This is not something I thought I’d ever be writing about, but I know how important creating awareness is for Lyme disease. After all, it was other stories that helped me discover what was wrong. Hopefully my story can help prevent others from getting sick or it at least helps them get answers sooner.
It all started in 2019. My daughter Jade was born (8 weeks early) in January. I wanted to get back fit and decided to challenge myself to a triathlon, so I signed up for the King of Greystones race, by the amazing Gavin Glynn foundation. I wasn’t a runner, swimmer, or cyclist so my husband helped me train every day and I was starting to feel amazing.
About a month short of the race, in June, I felt sick after a swim in the sea. I had a headache, a pain in my stomach and felt nauseous. I figured it was a bug but after a week or so I went to my GP because I didn’t want to keep missing my workouts. She said I’m probably run down (even though I didn’t feel that way) and gave me a prescription for paracetamol and anti-nausea tablets. I was never one for drugs (oh boy has that changed!) and I don’t like to mask symptoms, so I didn’t take them. Fast forward to the race at the end of July. I completed it and came fifth out of the females, which I was delighted with, but I felt like I was running on fumes. It didn’t feel right from the second I came out of the water.
Getting Answers
For months afterwards I could feel myself getting sicker and sicker. It became very apparent something wasn’t right. I could barely do any exercise and getting up in the morning was extremely difficult. As someone who used to get up at before 6am to go to the gym, this was very frustrating. Over the summer I had tests ran by three other GPs with nothing showing up. I’ve always been good at putting on a ‘game face’ but this was often met with a ‘but you don’t look sick’ from doctors, and I would have to convince them how sick I felt.
During the Autumn and Winter, I was getting even worse and felt like I was dying. I was on maternity leave and would often lie on the floor beside my baby as she played because it allowed me to rest. Carrying her upstairs would leave me breathless. It became so bad one weekend I brought myself to A&E. I was worried I was going to faint holding my daughter or not wake up. My head and my chest were in pain too. It sounds incredibly dramatic, but it was frightening. My blood pressure was very low when I was admitted, and they thought I may have a blood clot. After three days there a consultant came to tell me that they see nothing wrong, my symptoms don’t fit into his ‘typical boxes’ and he said, ‘you strike me as someone who is a worrier’ and tried to suggest my symptoms were down to anxiety. I don’t like confrontation, but I lost it and I’m not even sorry. I cried and argued that I know my body and I wouldn’t take up a valuable bed or leave my baby at home if it was all in my head. I cried the whole way home. I’ve come to realise that medical gaslighting is common with people who have chronic illnesses.
As my symptoms became worse and more of a neurological nature, I was referred to a neurologist. I was also referred to cardiologists, rheumatologists, and respiratory specialists which led to diagnoses such as ‘Fibromyalgia’ and ‘Post Viral Fatigue’ but neither sat well with me. My neurologist diagnosed me with NDPH (new daily persistent headache disorder) because I had a constant headache, and I was having issues relating to the brain and my central nervous system. I wasn’t fully convinced of this either but spent 1.5 years on medication to ‘manipulate my neurones’ in the hope it would flip the switch back. This involved taking high doses of anti-seizure and anti-anxiety medication. I really hoped these would help but I’m pretty sure they made me worse.
During my time with this consultant, he suggested I get tested for Lyme with my GP. Lyme disease is an infectious disease caused by the bacteria Borrelia burgdorferi. It is transmitted to humans by a bite from an infected black-legged or deer tick. I’ve spent a lot of my life outdoors exercising so this wasn’t a wild suggestion. I also have a dog who could have picked up a tick on a walk. I had the test done and it came back negative. I really thought that this time I might get an answer, or at least one that was reflected in scientific results. It’s also worth noting that 60-70% of people don’t have a rash with Lyme disease. This was my case too. No memory of a bite or rash. After doing some research and listening to a podcast on Nicola Lavin (thanks for sharing Jen) It became apparent that the testing in Ireland and many other countries wasn’t always accurate. This is especially the case in those with chronic Lyme. I mentioned this to my GP who told me to ‘stop listening to the quacks on the internet’. I didn’t pursue the conversation and put the Lyme testing to the back of my head.
A few months later I was still thinking about Nicola’s story, so I decided to go ahead and rule Lyme out to give myself some peace of mind. I had heard amazing things about a lyme literate infectious disease consultant. I noticed that he took self-referrals which meant I could avoid the awkward conversation with my GP. His office suggested I get the TickPlex Plus test (fully accredited) from a lab in Germany. Within days of sending my samples I received a positive and showed that my antibodies indicated a humoral immune response against Borrelia burgdorferi, Lyme disease. As weird as it was that was a happy moment. It took two years, but I finally had an answer. I asked my doctor if he thinks I got the disease two years previous when I first felt sick or could it have been earlier. There is no way to tell but it’s possible it was dormant in my body and my pregnancy weakened my immune system, allowing it to attack. I’ll never know for sure, but I suspect the latter and often wonder if it’s what caused my waters to break so early.
Sometimes I get mad at the healthcare system. I was fortunate to have good health insurance to go private, was confident enough to push and advocate for myself, yet it still took this long. But I know I’m one of the lucky ones and some people can have it for twenty years or more. Doctors are also humans, and they make mistakes. GPs aren’t specialists and the specialist consultants I dealt with didn’t always see the bigger picture outside their chosen field. That’s why I would urge anyone with health issues to trust your gut and keep fighting.
Lyme is a multi-systematic infectious disease. It attacks every organ of the body and every bodily system. Therefore, it’s often referred to as ‘The great imitator’ and so hard to diagnose. It can cross the blood brain barrier getting into the brain and nervous system, and that’s exactly what happened to me. I’m over 2 months into treatment with my Lyme literate consultant which involves a lot of antibiotics, low dose Naltrexone and supplements. I’m seeing some improvements already, all be it small ones, but I’ll take it!
My symptoms over the past 2.5 years have been the following but I know it can vary with each person:
- Constant headache/pressure since day one
- Feeling hungover/jet lagged 24/7
- Chronic fatigue
- Twitching
- Numbness especially in leg
- Nonrestorative sleep
- Bone, joint, muscle and tissue pain
- Allodynia – sensitivity and pain at the slightest touch (especially around my ribs)
- Burning or stabbing sensation in body
- Weakness, even at simple tasks (brushing hair, hanging up clothes)
- Ringing or blocked feeling in ears
- Night sweats and difficulty regulating temp
- Cognitive issues/Brain fog
- Speech difficulty/stammering
- Lack of concentration/coordination/disorientation
- Memory impairment
- Changes in blood pressure
- Heart palpitations
- Repeated infections etc. – canker/cold sores, lipoma which has since been removed
- Dizziness and balance issues
- Overstimulated – sensitivity to light and sounds.
- Difficulty with socialising/conversing
- Hoarse throat/swollen glands
- Shortness of breath
- Stiff and painful neck
- Pelvic pain
- Disrupted menstrual cycle
- Floating yellow spots in eyes
- Nausea and Acid reflux
Another challenging part of this disease is the emotional side. You mourn the person you were as your forced to live in a body that doesn’t do what’s its told and you must live a life accordingly. I struggled every day with this. I just wanted to go for a run, but I had to remind myself that I’d pay a price and would be sick for days after. Another part of it is the lack of validation. As Yolande Hadid says in her book ‘You don’t get it until you get it’ it’s important to remember that friends and family won’t every understand just how hard it is as they haven’t lived it. It can be frustrating to hear ‘Oh yeah I’m wrecked tired myself’ when your friends have had a busy week. At that point I remind myself not to rely on anyone else to understand. I’m sure I would have been the same if it was the other way around. Once you let go of seeking that understanding you will be less frustrated. Once you have a doctor that confirms you’re not going mad and if you’re lucky, a supportive partner, that’s what matters. You’ll use less energy explaining why you can’t exercise or go somewhere and spend it on getting better.
Time is Precious, but so is Energy
The last 2.5 years have been the best and the worst. It sounds contradictory but it’s exactly how it feels. I absolutely adore spending time with my daughter. Anyone that knows her will understand why. She is wild but in the best way and loves the outdoors. People always say they grow up so fast so I’m aware how important it is to spend lots of time together and be present. What makes this difficult is the energy needed to do this. If you know anyone with a chronic illness or you have just been diagnosed, I suggest you learn the spoon theory. It basically describes your units of energy as spoons. For example, I might feel like I have 20 spoons today, but it takes 8 spoons to walk the dog. You could also think of it like a battery, starting some days with 40% and thinking about what is going to run it down to 0%. It helps you understand and appreciate where your energy goes and what’s worth saving your energy for. If I’m lucky enough to get fully better or into remission I will continue to be mindful of the energy I use. Run from the drama and an unnecessary stress. The energy could be used on something better, more fun, or more beneficial to your life.
One thing I’ve really taken from all of this is that many illnesses are invisible, and we should never assume people are well just because they may look it. If someone is dressed up and well put together or looking awful with no makeup and carrying some extra weight, you have absolutely no idea what it took for them to get out of bed, get dressed and leave their home. Just to do that simple task may require them to go to bed when they’re home. Trust me when I say, they are paying a price for every move they make.
I will cancel something or do less chores if it means I go can and jump in puddles with my daughter. Every single weekend I would describe myself as ‘in minus spoons’ because I can’t bring myself to not play with my daughter. The guilt would be too much. Some days she might say ‘again’ after doing Ring around a Rosie 3 times. For anyone in full health that’s nothing, but for me it would bring me to tears just to do it again. The fatigue and general weakness in my body is on another level! My husband gets the least spoons of all. I’ve gone from mountain biking, running, everything with him to nothing and he walks the dog 99% of the time now (Sorry Stu!). Thankfully he understands and I can start making it up to him now that I’m improving.
Lyme during lock down – There is no denying the devastation that Covid-19 has had on the world, but, for people like me, it was a lifesaver. There are two reasons for this, one being that there was no expectation to leave the house, attend social events or even go to the office. I was back to my office after maternity leave for one month before lockdown kicked in and it was absolute torture. I cried so much because I was so sick and exhausted. Simply getting dressed and driving to the office was enough, let alone conversing or using my brain strategically. When we were advised to stay at home, I was able to manage my energy far better and not use it getting a work dress on or commuting. It also meant I could rest in between important calls etc. I managed to stay on top of my work, but it wasn’t easy, and it still isn’t. I didn’t want to give up work, especially when I had no idea what was making me sick.
Secondly, Covid has unfortunately left people with some long-term symptoms which is now coined long Covid. With this effecting approximately 1 in 3 people who have had Covid, more time and research will go into helping and understanding people with long term illnesses. My consultant Dr. Lambert is seeing many of these cases.
Although my story might seem scary, I consider myself one of the lucky ones because I have a diagnosis and I can continue to treat the disease and get back to 100%, fingers crossed. I don’t think I’ll be running onto the camogie pitch soon but hopefully I can get back to being more active. I’m on my third month of treatment and finally starting to feel better. There are potentially thousands of adults and children in Ireland who are still suffering as they are searching for answers or an accurate diagnosis. Hopefully this may ring a bell for someone, and they can get help too. Some people may not have the resources to seek help abroad or with specialists so it’s vital that we create more awareness in Ireland, so education and treatment can improve in the future.
