Shouting into the Void

This is the most difficult post I have ever done  but in light of  my recent Lyme diagnosis, I’ve decided to share the following in the hope that, apart from creating awareness about Lyme disease, it might help others who may be going through what I went through for years.

Lyme disease can be very difficult to diagnose.  The debilitating pain and fatigue can be misdiagnosed as Chronic Fatigue Syndrome or depression.  Pinpointing this type of infection is not an exact science and the symptoms are not always crystal clear. In my case it took all of 45 years to get a diagnosis.

I’ve been plagued with health problems all my life, starting from childhood. Chronic fatigue, painful foot and leg spasms, mood and sleep disorders, gastrointestinal issues, night sweats, recurring lower back pain, neurological symptoms, UTIs …These have all been part and parcel of my life for as long as I can remember. The symptoms come and go and can last for days, months or years at a time but chronic fatigue is there all the time as well as a few others.

In my lifetime  I’ve been clinically diagnosed with chronic fatigue, ME, PVS, narcolepsy, chronic depression and more. I have endured a myriad of seemingly unconnected symptoms coming from all parts of my body.  I have spent a fortune on doctors, consultants, psychiatrists, sleep disorder specialists. I have been on antidepressants and sleeping tablets on and off during my life.  I have needed medication to enable me to sleep at night and medication to keep me awake during the day.

At some point about 20 years ago I accepted that there was something wrong with me that medical tests could not define .   Conventional medicine provided no answers .  In my quest to get answers,  alongside conventional treatment  I also sought additional help from alternative/ complementary practitioners……..acupuncture, homeopathy, reflexology, naturopathy,  Chinese medicine….. the list is endless. But despite my myriad of symptoms, none of these holistic practitioners were ever able to join up the dots and give me any answers either . With the exception of one therapist   that I attended for a year and a half after my second son, Eoghan, was born in 1996, they were indeed of little, if any, help to me. However, I was so desperate for help, and even the knowledge that I had someone to go to was a great comfort to me as I struggled to find some light in the darkness.

The years between 2011 and 2019 were the longest stretch of relatively good health that I have ever enjoyed. I had chronic fatigue and other symptoms on and off, but overall it was pretty good. It was during this time I developed my passion for photography. At the shoreline I discovered the pure joy of living in the moment.   Standing at the shoreline, aware of the ever changing light in the sky, the winds, the ebb and flow of the moving tide and absorbed in their wonder, beauty and majesty.   I cannot adequately describe how much joy my photography has brought into my life. I feel so happy too when the viewer too connects with my images and feels it in their soul.

This year, I have experienced ill health again. I have been bed-ridden much of the time with chronic back pain.  My problems started in October 2019 with severe pain in my right foot. By the end of January this had worsened and I was now in considerable pain with my lower back and very stiff.  I went for 5 or 6 sessions of physiotherapy, but this had no benefits. My GP then referred me for scans which showed up nothing abnormal. So I was then referred to a Spinal Consultant to try to get to the root of the problem. I was sent to Cappagh Hospital for a spinal injection to ease the pain. This had no effect.  The consultant then recommended more physiotherapy. I felt I was going around in circles and it was very frustrating.

In October 2020, however, I became much worse. I now had very painful arthritis in my wrists, and was unable to perform the simplest of tasks around the house or lift anything. My hips were also very painful so I was unable to sleep at night. I went back to my GP practice in Drogheda. This time I was seen by a different doctor, who was recently qualified and working in a temporary capacity  with the surgery as part of his rotation training.  He did a huge range of blood tests and I was tested for everything under the sun.  On my second consultation with him to discuss the results he was perplexed that the blood tests were all fine.  It was clear though that I was in a lot of pain as I was on prescribed painkillers and anti-inflammatories every 4 hours.   He decided to refer me to a Rheumatologist as I was displaying symptoms of rheumatoid arthritis. I knew myself he did not think this is where the problem lay, but he had exhausted all avenues as blood tests were fine.

 His previous examination had detected nerve damage to my feet  I was unable to sense/feel the vibration being applied from the tuning fork on my feet.   He queried if I had been bitten on my foot.    I thought about it and then recalled that, yes, that I had gotten a small bite on my foot in October 2019 on a photographic trip to Italy.  At the time I thought it was insignificant, apart from the fact that it was a little itchy.     He suggested to me that I might have Lyme disease. Blood tests were arranged for testing up in UCD.

That day marked a turning point in my life in so many ways and I will always be grateful to that GP for shedding light on the darkness that was part of my life. I went home from the surgery and started studying up about Lyme. As I educated myself about Lyme disease, I came to realise that I have lived with this disease all my life. Suddenly, my life came full circle, all my struggles, bad health, strange and debilitating symptoms. I was now able to join up the dots myself and make sense of it all. This demon that had a grip on me and kept coming back time and time again to unleash more misery, it was Lyme Disease.

I can trace back to when the problems with my health first started.  As a child of 8 or 9 years old I remember getting bitten by ticks in the haybarn of my grandparents’ farm down in west Clare. I remember picking them out of my arms.  For years after that I suffered with recurring UTIs, chills and chronic fatigue and a range of other unpleasant symptoms.

After my surgery visit , I joined an online support group TickTalk Ireland and this a huge support as well as a wealth of information. They advised me to get blood tests done privately in Germany, as the blood testing done in Ireland for tick borne diseases was not completely accurate.  As expected, the results from UCD were negative so I sent blood samples to Armin labs in Germany which are more sensitive than the tests done in Ireland.   No test is always accurate, so a clinical diagnosis by a Lyme literate doctor is necessary.   A Lyme literate doctor will diagnose someone with Lyme if their symptoms match it and cannot be explained by anything else.   There is only one Lyme literate ID Consultant in the country, Dr Jack Lambert of the Mater Hospital in Dublin.

The results came back from Armin Laboratories. As expected, I tested positive for Lyme disease, Borrelia Burgdorferi.    More than one infection can be spread by a tick at the same time  ( called coinfections ). In addition to the Lyme I tested positive for about a dozen different co-infections. The most well-known coinfections are Bartonella and Babesia. One reason Lyme disease presents in so many ways is that some of the symptoms are not from the Lyme itself but from these other coinfections that emerge when the immune system malfunctions.

In my case it’s not clear if the bite I got in October 2019 ignited old infections that lay dormant for years, or if this bite introduced new infections into my system. Many of the symptoms I had this year were new to me.  They completely floored me. I had never experienced joint, muscular and nerve pain like it before, arthritis or the chronic stiffness.

   A Lyme diagnosis is not good news.  But for me it has given me an understanding of why my life has been the way it was.  Finally after 45 years I know what my demons are.  Armed with this knowledge, I am able to fight them.

Some key components to recovery include an anti-inflammatory, allergen-free diet, adequate rest and avoiding stress. Stress causes painful flare ups in an already overburdened body. Treating Lyme requires a global approach that not only kills the Lyme and co infections but also strengthens the gut and immune system so that the infection can be kept at bay.  Removing sugar, dairy and gluten from my diet has had a remarkably positive effect on my wellbeing.  The pain subsided enormously, as did the stiffness.

The past year has taken a huge toll on my body and I feel battered and bruised. My immune system has been severely compromised. Nerve damage to my feet is causing issues with pain.  I have arthritis in places. I don’t have a huge pile of energy, so I need to preserve what I have just to get through the day, and get out for walks a few times a week. In addition to conventional medicine there are dietary and herbal approaches to this disease too and for me, my recovery will involve both conventional medicine prescribed by my ID consultant and support from Lyme Literate therapists / practitioners.

I am aware that this will all take time, but I do hope that by this time next year I will be enjoying good health. I am sharing all this because I want to create awareness about Lyme disease. The HSE website states that Lyme disease is not a common infection and that there are 50-100 cases annually. Taking into account so many cases go undetected or undiagnosed, Dr Lambert at the Dublin Infectious Disease Clinic estimates there are actually 2000 cases across Ireland annually.

It’s a difficult disease to diagnose, and I have learnt from my own experience and that of others I have spoken to, people are often referred to Neurologists, Rheumatologists, Psychiatrists, Sleep Disorder Specialists, Physiotherapists…etc. More education is badly needed and in general, there does not seem to be really any awareness in the medical community. People, like myself, have been shouting into the void for years and years before being properly diagnosed and receiving appropriate help.

I have Lyme disease and those of you who know me are also aware that I am completely deaf.   I had cochlear implant surgery in 2016 which enables me to hear fairly well.   I dont allow either of these issues to define me.  First and foremost I am a Landscape & Seascape photographer. Photography is the air that I breathe.  It has carried me through dark and difficult times. . I do believe that the joy I got from creating images over the past 10 years has helped me enormously and has given me the strength to develop and blossom as a photographer. The bite I got in Italy in October 2019 has reignited dormant infections and perhaps introduced more. However, it has been a blessing in disguise as finally I have answers.  For the moment, I need to rest plenty and avoid stress to give the medication the very best chance to succeed. This is not a death knell for my photography. Rather, it’s a new beginning. I have faced my demons and now know what I am dealing with.  I will continue to capture the beauty all around me & I look forward to spending more and more time at the shoreline in the coming weeks and months. The shoreline is where I belong. It’s where I feel happiest. It brings out the best in me and I hope that is reflected in my images.

Thanks to Tick Talk Ireland for all their online assistance and friendship.  They have been a mine of information and a great source of comfort as I try to navigate through all this.

Thanks to my consultant, Dr Jack Lambert, Dublin Infectious Disease Clinic, Mater Hospital,  my GP,  Dr Tony Crosby ( Dublin ), and Nutritionist/ BioKinesiologist, Pippa Health in Dalkey for their ongoing help and support .

Last, but not least, thanks to my family and friends for their enduring love and support  both now & throughout my life.

Additional notes :  23 Jan 2021.

As my life has unravelled over the past few weeks/ months , my deafness has been very much on my mind.  I have realised in past few days that in all likelihood , my deafness was caused by the Lyme disease.  Up till the point that I was bitten by a tick as a 9 year old child in west Clare , I did not have any problems with my hearing .  Afterwards , however, I suddenly was having huge difficulty hearing in the class room , at home,  and with my friends.   As well as the hearing loss this tick bite also triggered a whole lot of other health problems at that time, including persistent and painful UTIs and chills.

 

Main image : Me as a child at my grandparents’ home in west Clare .

24 Replies to “Shouting into the Void”

  1. Tick bites were so common as children playing in hay barns etc. It is unreal the random nature of the fact that I got no adverse results and you got a life altering and debilitating illness!! Hope all the approaches you are being offered now will give you a whole new lease on life and a pain free and joyful future.

    1. thanks Berni . Yes, I asked Dr Lambert how come some people get sick from tick bites and others dont. He said its the same as covid. Some get very sick, others are asymptomatic. Appreciate your good wishes for my recovery and look forward to meeting you again sometime soon xx

  2. Beautiful thought provoking and well written piece, Eimear. You have really been on a tough journey and I wish you well and a speedy recovery.
    I have a small understanding of where it all is for you. My Brother in law is also a long term sufferer.
    It was too late for a recovery plan for him as he had it undiagnosed for so long with too much damage done. He is one of the most optimistic and driven people I know and won’t let it get him down.
    He says he has too much living to do.
    All the best in 2021, stay safe and keep the wonderful landscapes coming. 👏👏👏
    Colin O’Riordan

    1. Colin, Thanks for your lovely message filled with hope . Sorry to hear that your BIL has this awful disease too . But it sounds like he is not letting it get the better of him and is living his life to the full. Best wishes to him for the future. Thanks kindly for your good wishes and many Happy Returns to you . Eimhear

  3. Congratulations on your diagnosis and thanks for sharing your remarkable story Eimear, you inspire só múch with your photos and now with your words, good luck on your road to recovery

  4. Oh my goodness Eimhear, what a story. I would never have known that you were suffering so much. You were always smiling, helpful. I remember the sandwiches and tea from the back of your car after a sunrise shoot. I think you are amazing . Please God that with your correct diagnosis and treatment you will get relief soon. Love and best wishes , hopefully we will meet soon, Katy xx

    1. Katy.. Thanks for your lovely message and kind words. I can look forward to the future now Katy as I am taking baby steps in the right direction . Yes, would love to see you sometime soon xx

  5. Golly Eimhear….what a read. U r not ‘just’ a brillant photographer but amazing author too!!! I thought ur ill health was only recent…gosh u hav suffered but u always have a smile on ur face. It must b such a relief to at long last hav a diagnosis.
    Hope this diagnosis now lets u improve ur health. Wishing u ALL that is good in 2021…u sooo deserve it.

    1. Noeline.. lovely to see your comments and kind words here. Thanks for reading the blog and taking the time to connect. Yes, it is a huge relief to know what I am fighting . My life has come full circle. Take care of yourself and Happy New Year to you x

  6. Eimhear,my heart goes out to you on reading this. What strikes me most is your resilience in the face of dreadful adversity. I have always found you to be full of enthusiasm and positivity. You never gave any indication of the suffering you were enduring. I hope your diagnosis,your bright outlook and your passion for photography and the shore bring you to a better place. We all need to keep seeing your beautiful images.

    1. Dick. Thank you so much for taking the time to read the blog and your nice words. I am just so relieved to finally be able to face my demons unmasked. Never before could I understand what I was fighting . Take care of yourself and hope I see you sometime soon x

  7. Eimhear. One sentence stands out for me: ‘Armed with this knowledge I am able to fight them’ Look to the future, there are lots of new immunology treatments coming along now and in the near future which will help you and others. Hopefully you will be able to put this illness behind you, but will help to serve and educate others. I look forward to seeing more incredible photography from you..

    1. Eamon, Thank You for your very kind words.. Knowledge is power. I have a battle ahead of me, but feel confident I will conquer it . Take care of yourself and a Happy New Year to you and yours x

  8. Eimhear, I have only recently started following your amazing posts on Twitter , recommended by your fabulous cousin Siobhán. Thanks for this blog. It will undoubtedly help raise awareness.
    You certainly have been through the mills. I’m so glad you finally have a diagnosis. What a journey. Wishing you the very best for the future. Your eye for beauty is amazing and your photography is inspiring.
    May your next few months bring healthier times and new freedom.

    1. Hi Jo, thanks for taking the time to read my blog and for your very kind words about my photography too . With Lyme disease education and awareness are key to ensuring others don’t have to suffer like I did. I am glad to finally know what’s wrong with me and I can now face my demons . Looking forward to a brighter future. 🙂

  9. Dear Eimear, what a long battle you’ve had to get to the bottom of your illness. Unfortunately the medical “experts” are all experts in their specific fields but seldom have a holistic approach. Also, for uncommon or unusual sicknesses they have no idea. I remember hearing of a man who was seriously ill in hospital and was being treated for his symptoms rather than for the root cause of his illness. It was only when a doctor visiting from the USA saw he he recognized the patient has Legionnaires Disease, unheard of at that time in Ireland, but common knowledge in the USA. Social Media has a place to describe your symptoms and seem if anyone, from home or abroad, recognizes them. Best wishes for a full and speedy recovery.

    1. Hi Tim, thanks for connecting and I really appreciate your kind words and good wishes. Yes, indeed, I agree, the medical profession needs to be more open minded . Just because they have not studied about Lyme and its coinfections does not mean it does not exist. Take care and Happy New Year .

  10. What a story Eimhear. I haven’t seen you since our children played tennis in Bettystown. I knew nothing of your illness but I’m so happy for you that after such a long time you have found a diagnosis. Wishing you good health and happiness in the future x

    1. Catherina, Lovely to hear from you and thanks for your kind words and good wishes. Looking forward to better health in the future . I have very happy memories of all the fun Eoghan, Thomas, and all the lads had on the courts all those years ago . Good times. Take care and stay safe, Eimhear x

  11. WOW. Eimhear, you just described my life. I came down with what we were told at the time was juvenile rheumatoid arthritis when I woke up at six years old paralyzed and had joint pains for years among milk intolerance, terrible anxiety, hyperactive, and unable to concentrate or retain information. I was lucky and within a few months I slowly was able to walk again as my body loosened up. But I have always had something going on my entire life.

    I am just about to turn 48 years old and about 8 years ago I started coming down with all of these autoimmune problems, exhaustion, neuropathy, brain fog, memory loss, fibromyalgia, and the latest being narcolepsy with cataplexy and parasomnia.
    I have several doctors and put on so many medications. Finally I went to see a psychic for fun and she says I am seeing Lyme disease.

    So after trying to figure out who to see and what to do I found a Lyme literate Doctor Who tested me and said I have chronic lyme disease and most kids that were found to have juvenile rheumatoid arthritis actually had gotten Lyme disease.

    For almost a year now I have been getting injections of antibiotics 3 times a week and I am really not feeling any better so I’m currently trying to figure out what I can do cuz I refuse to give up.

    Thank you for sharing your story. Makes me feel less crazy hearing it and I feel validated by reading your story.

    The best of luck to you!

    1. Hi Anne, thanks for sharing your own story . So many of us were shouting into the void for years before we got any answers. I think it can take a while to get the right combination of antibiotics. I am on 3 different antibiotics for 6 weeks now . I don’t feel any different yet . Changing my diet had a huge impact though on my wellbeing . I am looking into BioMagnetic pair therapy too. I hope that this year brings you better health and happiness . Thanks for your good wishes x

  12. Hi Eimhear, I have just come across your blog which was shared by LDUK. Not only was I moved by your experience of this horrible illness, I was also very moved by your photography. Like you I am also a keen landscape and coastal photographer based in the New Forest, a very common area for ticks.
    To cut a long story short some strange health symptoms suddenly hit me the summer of 2019, the worst one being dysarthia (slurred speech) and it has cost me my day job. An NHS test actually showed a positive Lyme result but the NHS, including a neurologist having ruled out MS/Myasthenia refuse to acknowledge this as being the cause of my speech as “you’ve had your antibiotics they would have worked”. So I have been left with no official diagnosis and no further treatment. I either have to live with it or visit an LLMD but having no job makes that very difficult. Obviously this is the grim reality of many sufferers as I am discovering.
    But you have had to fight a lot longer and harder then me and I’m glad you have sought solace in your photography. (I love the Artic pictures by the way). When I am out capturing say.. a beautiful sunrise… I do forget about it all. I have recently posted on my Flickr/Instagram accounts warning my fellow photographers to be vigilant about ticks.
    Thank you for sharing, I wish you well with both your photography and health x

    1. Hi Christine, Thank you for taking the time to read my blog and your kind words. So sorry to hear about your own struggles with Lyme . I am glad that you too find solace in your photography. Your work is truly wonderful . Photographers are very much at risk of this disease , so it is good that we are able to create awareness on our platforms.
      I too wish you well with your health. I hope you get more answers . Wishing you continued success and happiness with your photography xx

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