I can pinpoint the exact date my catastrophic downward health spiral and hence my journey living with Autoimmune Disease began. You do tend to remember with crystal clarity when (overnight) you transform from being a healthy fit 16 year old to someone plunged deep into the midst of illness and fear.

Living with Autoimmune Disease and Parvo Flu Virus

I was thrown into the all consuming chaos on New Year’s Eve 1995 to be exact, just a few months after we had relocated 200 miles to Kent. A year of massive change climaxing in to something far greater than anyone could ever anticipate.

And not in a good way.

My friend Emma had come down to stay with me and we celebrated at a pub with a group of people we barely knew, feeling the (heightened) self-consciousness of being teenagers wildly out of our comfort zones. To be honest whilst we were determined we would be out as the dongs chimed Midnight, the dressing up and giggles getting ready together were a millions times more fun, and secretly we were both relieved to get back home as soon as we could – our reputations in tact at least.

I remember the night so clearly. A sense of unease and apprehension mingled with excitement. Wanting to fit in and build up my social life in this new place. I wore a short black dress with a shiny silver T-shirt. My Denim jacket in no way sufficient for the freezing cold 20 minute walk we took.

In hindsight I’ve often wondered if something so simple as switching that jacket for a cozy fleece parka could have saved me? If I had never caught the Flu that night would I have never developed a Chronic Disease?

Crazy harrowing thoughts?

……Besides I already felt slightly overdressed amongst these new alien people brazenly wearing their mum’s bright red shift dresses and high heels. At least Emma and I had tights on!

In truth I believe that the stage was set for my Autoimmune Disease to develop a long while before it was presented with the ideal opportunity to emerge. A combination of perfect circumstances coupled with a strong genetic predisposition and a complete lack of any knowledge (on my part) which could have helped protect me.

Once triggered, this intensely dramatic roller-coaster ride took on a speed and direction of its own and I was simple an unwilling and increasingly terrified passenger clinging on.


I woke up that New Year’s day with a raging sore throat, aching all over and in total pain. I had never felt this ill before. To be fair, aside from the odd traditional childhood illness I had never really even been sick. This was the Flu and it felt terrible!

But at least it would only last a few weeks right?

for it is the the duration of time which takes this type of Disease to a level most simply cannot imagine.

Actually, what happened was that I never really recovered fully and eventually I was diagnosed with ME/CFS, but I knew in my heart that there was much more going on which the doctors were missing. I could feel it deep within my bones. A fearful premonition and dreadful insight that whilst things were okay-ish for the initial 5 years, this was going to get worse before it got better.

Much worse.

And I was right.

Following University I became bed-bound. For a couple of years perhaps. Progression to a decade (or so) of being primarily housebound then cuts a (very) long story short to fill you in on the extremity of it all. People asked me how I felt and I had no answer. All I could manage was;

“It is like having the worst hangover combined with the Flu, and x 100.”

Yet of course the truth is always a million times more complex and my words lacked the insightful conciseness and accuracy needed to portray this physical and mental nightmare. I didn’t understand what was happening to me so I couldn’t even begin to explain it to others.

My identity and self-worth diminishing daily as I retreated from the world.

At a time when I should have been tentatively embracing adulthood I was weak and vulnerable. My anxiety ever present and sky high. My family my everything. A million feelings impossible to convey. Everything had changed…… And then once I got stuck in the deep murky depth of it all, it felt like nothing was ever going to change again.

Heartbreaking for everyone involved.

Only someone who has been there or has lived with a sufferer will ever fully comprehend.

I was eventually additionally diagnosed with Hasimoto’s Disease in 2000 which is an Autoimmune Thyroid condition where the body begins to attack itself. Replacement hormone is needed but in my case this also caused confusing (and unusual) reactions. My adrenals were a total mess and replacement was also sought here, but there was still something massive dragging me down and it took me until now (Sept 2014) to find another major piece of the missing jigsaw puzzle.

It seems that in fact really I have indeed had the Flu for 19 years!

That initial flu Virus which struck me down (all those years ago) was the Parvo B19 Virus strain and for *some reason I never was able to fight it properly which is rare. My body became incapable of mounting an adequate immune response against it after a while, and the virus is still measurably active in my body today. I no longer produce any antibodies to fight it and it continues to rage and cause utter havoc – albeit less so with all the good measures I have passionately implemented over the years to counteract the damage.

WOW!

Proof at long last and an extraordinarily bittersweet answer which rocked my world!

Shock. Amazement. Relief. Gratitude. Hope. Euphoria and a million questions…...

“Maybe now I can stop blaming myself for not getting better results?”
“Maybe now I stand a real a chance at recovery/treatment and can let myself dream of one day getting married, having a baby and having a job?”
“But how was this not found earlier???”

Looking back I believe the Flu infection was severe enough to encourage the trigger of my Autoimmune Disease and was the catalyst for all that ensued.

“There is strong evidence that acute parvovirus B19 infections are involved in the pathogenesis of some cases of Hashimoto’s thyroiditis.”

(A 2008 PubMed Research study)

All I know is that my immune system got crazy confused and severely compromised. The virus was able to take residence and set up home and in this (weakened) state I was further vulnerable to every other infection and potential pathogen which came my way. I was living in a body which could barely tread water. I certainly did feel as though I was drowning back in the worse days.

The picture is complex, and to be honest, i’ll never know the true order of it all for sure -especially as I learn more and more each day. For me , when I write and speak about my condition, I may intermittently alter the terminology. It isn’t black and white, and WHAT’S IN A NAME AFTER ALL?


So just how do you even begin to find your way out of this complex maze? How do you start to unravel 19 years and put the pieces back together?

You do with Courage, Strength, Intelligence and Tenacity.

And above all else you do it with Faith, Spirit and Belief.

Recovery and healing from Autoimmune Disease begins with yourself. YOU NEED TO FIND THE ROOT CAUSE AND INTIAL TRIGGERS, AND QUESTION IF YOUR OWN CFS COULD BE LINKED TO AN INFECTION TOO? You will need to become your own best Doctor and this will be a full time (and unpaid) position. It takes a very long time and I admit that I am very much still a work in progress myself.

It is overwhelming granted but when you are at the bottom there is quite simply only one way to look.

Look up.

Foundations need to be built for healing to even commence and Mindset is crucial.

+++++++

Here are my 8 top tips for creating the Mindset you will need in order to (begin to) heal from Autoimmune Disease:
Acceptance:

To begin to get over something you firstly need to acknowledge it, and this is the tough part. You must Accept it. For now anyway. This is not the same as giving up. It is the opposite. Basically it is what it is and once you know what you are dealing with you can form a plan.

Peace:

Once you have Acceptance you need to seek some level of Peace. Healing cannot ever come from a place of anger or desperation. Find Peace with where you are right now by knowing that this is the path towards a better brighter life. Begin to explore MEDITATION or GENTLE YOGA as a way of connecting to a higher spiritual Peace. From here your body can get the proper rest it needs to be ready for the journey ahead.

Hope:

Things may get really tough. Hope will at times be all you have left. Keep the faith always and immerse yourself in recovery stories and positivity. Know with all your heart that this will get better.

Kindness:

To yourself first and foremost because this is an incredibly difficult challenge and many people will not understand. You are doing your best everyday. Give yourself credit and be proud of yourself. Also be kind to those who help and support and love you. It will make you feel better too.

Forgiveness:

It will take time to forgive those friends/family who leave you and those who judge you. It may take longer even to forgive yourself and your body for failing. To rid yourself of the thick heavy guilt of somehow causing this or for being a burden. I believe long-term (invisible) illness is one of the biggest tests of character one can face. Dealing with the all consuming harsh physical reality alongside judgement and stigma is beyond overwhelming and unfair. Of course you are justifiably angry but after a while you do realise that your energy is better spent elsewhere and you have to begin to let it (and other people) go. Release it all and forgive when you can.

Dedication:

Focus on everything you can do to heal. Explore, research and commit to well-being. Practice good Nutrition and Lifestyle. Use this as a learning opportunity. Absorb all the knowledge out there and become your very own best doctor. Don’t be swayed but he ego and other people. Trust your own instinct and be prepared to consider combined approaches.

Courage:

Finally the stage will be set to implement all these changes and to dedicate your life towards this action plan of healing you have created. In order to take action you need courage, and you have it in spades. You would not be at this point if you didn’t.

Action:

This only requires baby steps and it doesn’t mean that there wont be set-backs unfortunately. Just stay brave, stay strong and continue to nurture and nourish those foundational roots which you are building.

The smallest action can trigger the greatest result. It all counts.

Gratitude:

Above all else find joy and gratitude in everyday life. There is always so much to be grateful for in every circumstance. So much love and beauty in the world. It is true that many people have lives so much more difficult than own own. More so than I could begin to imagine.  Value and respect the people who care and hug them tight. Notice the rainbow, the stars and the sunsets. Dance, sing and giggle as much as you can. Be Present and as positive as can be – without denying any emotions which need to surface from time to time. A smile goes a long way and can help to set you free.

+++++++

*All of the above are ongoing and even now there are areas which I need to work upon – mostly around forgiving myself which was a huge revelation as I wrote this article.


Healing and Recovery from Autoimmune Disease is a unique and individual path. There have been many humble lessons I have learnt along the way and the most valuable of all is that whilst THIS is certainly my story and I share it openly with you, I AM NOT MY STORY and I AM NOT MY DISEASE.

I am quite simply ME and always have been. I will grow and evolve but that can never change.

Deep down beneath all the layers I am a soul which is perfect regardless.

I find comfort in this knowing.


*Update May 2015 – It is looking like Lyme Disease and Co-Infections may also be part of the bigger picture and root cause. Read more HERE. I shall carry on unravelling as I go …. 

**Update March 2016 – I am still very much in the murky midst of this cruel illness and life is very limited and restricted. I still am unwell every single day and barely leave the house. The Lyme Disease picture is soooo much bigger and scarier than I could ever have comprehended. I admit to feeling massive fear and other mood issues of late, and very much want to start seeing some improvement.

I would love to hear from you in the comments below… Perhaps you can also help me too? I am looking for as much information (and similar) stories as possible. Did your Autoimmune Disease begin with a Flu Virus too? Or perhaps even better you have found a way to heal further and you are embracing a new exciting wellbeing path? Have you forgiven yourself for the pain this illness has inflicted? Please share with anyone you can and together let’s get this topic aired and solutions discovered.

Thank You.

Love + WishesCarlyxxx

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33 Comments on Living with Autoimmune Disease: I’ve had the Flu for 19 years

  1. Ariadne
    January 22, 2015 at 7:11 pm (2 years ago)

    truly inspirational and amazing story, Carly. So powerful in sharing it, well done! Sending you lots of love xx

    Reply
    • Carly
      January 23, 2015 at 3:57 pm (2 years ago)

      Thank you lovely. It was a nervy moment pressing send. I hope my other posts combined balance out the ‘seriousness’ of this one to give an overall balance. I want Living Brightly to be a happy space but I’ve realised its important to include the raw + real stuff too – albeit in as positive manner as possible.
      Honestly I feel so odd feeling called ‘inspirational’ – I struggle to feel deserving really – or more so than anyone else anyway I guess. I believe we all inspirational and all doing the best we can with what is thrown at us and the character traits we are given. Writing this blog is certainly helping my self worth and confidence I believe so thank you again for all your support. xx

      Reply
  2. Jess
    January 22, 2015 at 11:46 pm (2 years ago)

    Hi Carly,

    Your 8 points to dealing with chronic illness are succinct and perfect. They are the precise recipe I use to do life with ME/CFS.
    My condition came on following a bout of mononucleosis when I was 16. I had been an elite gymnast and high academic achiever prior to this.
    I managed a diagnosis just last year, at 29. The experience of the intervening years – (the lost cognitive function, jobs, homes, relationships etc,) living with an invisible illness is beyond words to express, and frankly unbelievable to most people.

    I identify very strongly with your experience and enjoy what you write… It could be my own words.

    Practicing those 8 steps above I now have a sense of self worth growing and a version of life that promotes my wellbeing. Thanks for what you do with this blog. Take care xo

    Reply
    • Carly
      January 23, 2015 at 3:53 pm (2 years ago)

      Hi Jess,
      Great to hear from you and thanks for connecting. It sounds like we have a similar story – bar the elite gymnast bit! 😉 haha
      Im so glad you liked the post and you resonated with it. That is great for me to hear.
      I hope you continue to make progress with your wellbeing path – its a long journey but so rewarding in places isnt it? I hope we both reach fabulous health from all the work.
      Thanks so much again and stay in touch and let me know how things are going.
      With Love
      Carly x

      Reply
  3. Karen Wood
    January 24, 2015 at 3:41 am (2 years ago)

    I’m so sorry that you have it that bad. I’m not as bad off as you and I hate it bad enough. I wish us all wellness.

    Reply
    • Carly
      January 24, 2015 at 12:06 pm (2 years ago)

      Thanks Karen. I wish you improved health too. We will also get there I am sure. Take care xx

      Reply
  4. Chloe
    January 24, 2015 at 6:43 am (2 years ago)

    Hey Carly,

    Thank you for opening up to everyone about your true feelings and the pain you have put your self through as I think that is the biggest key to ever deal with.

    As an ME Suffer along with many other illnesses for the last 18years diagnosed about 12yeara ago following a car accident and mugging, everyday is the joy of flu like symptoms and as I also like to discribed it a hang over without the drinking!

    I have met many people far and wide with ME, who dealing with the acceptance and starting to realise blaming yourself actually makes u worse. Truly seeing it written down in black and white this morning from your words I feel will help so many people realise that it’s normal to do it and given ways to help cope with it.

    That’s what most doctors dont realise is, if they have simple short coping strategies to offer suffers then they have something to work towards.

    Thank you for giving me the ability to know I’m not the only person who feels like u, that my friend is priceless x

    Reply
    • Carly
      January 24, 2015 at 12:11 pm (2 years ago)

      Thanks so much Chloe. Sorry to hear of your own struggle and I hope things improve for you. Chronic illness has so many layers and repercussions doesn’t it? Its affects much more than people realise and I think everyone feels this way – so no you are definitely not the only one 😉
      For sure, coping strategies and Mindfulness techniques are not a cure…. but yes they give us something to work on and begin to build the best foundations possible for ourselves… alongside food and other holistic measures – which are all fundamentals. Take care and thanks for connecting xx

      Reply
  5. Robin
    January 24, 2015 at 10:16 pm (2 years ago)

    It truly does have a healing effect to know of others coping with such difficult & ongoing Health Challenges. It’s been a very long, strange & lonely road for myself. It requires much fortitude to go forward every day. I know the feeling of shame for not being able to keep up & live a so called “Normal” life. Presently, I’m 6 years out from a diagnosis of Non-Hodgkins Lymphoma, researchers have made a connection between Lymphoma & Epstein Barr Virus, though they’ll never say what caused the cancer, frankly they just don’t know. Thankfully, Chemo has treated the Lymphoma but has left me with severe & Chronic Fatigue worse than prior to the cancer. Thanks for your encouraging Spirit.

    Reply
    • Carly
      January 28, 2015 at 3:07 pm (2 years ago)

      Hi,
      Thanks for connecting and so sorry to hear of your own struggles. It sounds very difficult. Keep the faith and stay strong. I believe we can do lots to aid healing alongside anything else we need. I continue to take it day by day myself but starting writing has been very therapeutic as I feel like I am finally doing something worthwhile. I hope so anyway. Thanks for your support. Take Care.
      Carly xx

      Reply
  6. Melissa Mitchell
    January 26, 2015 at 5:21 pm (2 years ago)

    Carly, Your story touched me deeply as I have been suffering from the same thing, persistent parvovirus b19 and it’s literally wreaked havoc on my entire body, my immune system, my autonomic system and my joints. I am inspired to now read through your blog more and see how we can possibly connect. Thank you for opening up and sharing your story. Melissa

    Reply
    • Carly
      January 28, 2015 at 3:05 pm (2 years ago)

      HI Melissa,
      Thanks for connecting here and in the forum. Its great to meet people in a similar position and learn more about ways to help one another. I would love to hear more of your story if you want to connect privately too. How is your IVIG going? At the moment I am just doing all I can to aid healing on a foundational level – mainly because thats all my body seems to accept – although its hard. And also because I am still waiting to hear about IVIG although I understand I still need to do as much as I can to reset my own immune system as there must be a reason why it cannot fight the virus itself. How are your antibodies?
      Thanks so much for sharing my post too – I love to hear feedback. Take care xx

      Reply
  7. inspiration
    January 27, 2015 at 12:45 am (2 years ago)

    Hi there it’s me, I am also visiting this website daily, this website is
    truly nice and the people are truly sharing good thoughts.

    Reply
    • Carly
      January 28, 2015 at 3:01 pm (2 years ago)

      Hi,
      Thank You thanks so lovely to hear 🙂 xx

      Reply
  8. Marla
    January 31, 2015 at 10:19 am (2 years ago)

    Wow, we could be twins, my autoimmune issues were also triggered by viral, began at 16 and I am now 46. Took almost my whole life to find root issues thanks to my Dr trained by the Institute of Functional Medicine. My body wears the scars from what the medical industrty left behind. Their answers almost killed me. Blessings to you.

    Reply
    • Carly
      January 31, 2015 at 5:02 pm (2 years ago)

      Hi, wow so how are you doing now? I love to hear recovery stories – keeps me hopeful 🙂
      What was the root cause for you and how did you treat the virus if I can ask? I have done a lot of functional medicine work and anti viral herbs but I need to understand and fix the compromised immune system. Take care xx

      Reply
  9. Crystal Weare
    January 31, 2015 at 1:17 pm (2 years ago)

    Hi,
    Thank you so much for writing such an articulate and heartfelt article. Something has been very wrong with me for the last six years and to this day I’m not sure what’s going on. Your story sounds very similar to mine. How did they discover you had parvovirus b19? Any
    advice would be much appreciated.
    Thank you! Crystal

    Reply
    • Carly
      January 31, 2015 at 5:01 pm (2 years ago)

      HI Crystal,
      Thank you,
      Sorry to hear of your struggles. I found it by chance as we knew there was likely a viral aspect but it is a bit like a needle in a haystack hunt…. and most doctors dont even want to know. It took 19 years which is crazy…
      I dont have antibodies so it would not have been picked up in standard tests even if they did them – which they dont. This is what makes my case more ‘interesting’ although I am no further on in treatment yet…..
      I had a positive DNA PCR test showing its still active but negative antibodies mean that my immune system for some reason is just not responding. I paid for the test privately and then had repeated on the Nhs.
      Let me know how you get on
      Carly xx

      Reply
  10. Shell Tzorfas
    January 31, 2015 at 7:32 pm (2 years ago)

    Your writing style is great and when you spoke of your teen years leading up to the point when you fell ill, I thought that it was the beginning of a novel. I think that you can turn your story into a thoughtful compassionate novel with a few minor changes such as giving the characters names and I encourage you to do so.. Shell of the book,”Recovering Autism, ADHD, & Special Needs.”

    Reply
    • Carly
      February 1, 2015 at 5:10 pm (2 years ago)

      HI, Thank You. I am currently working on a guide Ebook to help others – which will have snippets of my story. But actually after that I am very excited to start work on my health (memoir style) story as a proper book. I guess I am still waiting to see ‘how it pans out’ a little more but am looking forward to starting the process when I can and will be looking for as many tips/support on publishing as possible.
      Carly x

      Reply
  11. Andy
    February 9, 2015 at 5:10 pm (2 years ago)

    Wonderful piece, Carly. Those eight top tips definitely capture the best attitude in a nutshell. It can certainly take time to realise them, though!

    It must have felt good to finally know what was causing you to feel like you did. Doesn’t necessarily give all the answers but, like you say, it certainly takes away that self-guilt which so many of us have for not becoming well.

    I remember the exact day I became ill too – 21/12/95 – just 10 days before you!

    I look forward to the E-book. I imagine it will be helpful to so many people.

    Andy

    Reply
    • Carly
      February 9, 2015 at 6:33 pm (2 years ago)

      Thanks Andy. Wow how strange the dates are so close. Yes, it helps it so many ways although obviously the best thing ever would be to finally feel well – as you know. Hope you are doing ok – ish. Take Care Carly x

      Reply
  12. Casey
    February 11, 2015 at 3:52 pm (2 years ago)

    Mine was ultimately triggered by a flu vaccine. For some intuitive reason I did NOT want to get it that year, but being that I had had swine flu several years earlier, the doctors scared me into getting it every year. I had an allergic reaction and thus began the spiral of pain and physical turmoil I’ve been slowly digging myself out of for the past year. Do you think you’ll get better and be able to rid your body of this eventually? Had you seen an alternative/functional medicine doc who can help? Best wishes and lots of luck!!

    Reply
    • Carly
      February 13, 2015 at 11:44 am (2 years ago)

      HI Casey,
      How annoying for you. Yes I avoid vaccinations now but it is a tough choice as obviously they are beneficial for some things. I guess its individual as to whether the body can cope.
      Yes I’ve seen many functional doctors and believe Im doing all I can. I obviously don’t know for sure but all I can do is believe that yes I can recover – even if that is not to 100% I don’t mind. Good luck and thanks for connecting x

      Reply
  13. Nicci
    February 11, 2015 at 4:50 pm (2 years ago)

    omg! I have Hashimotos also and had parvo virus in college. I was super sick and turned purple everywhere. Where can I find research connecting parvo and Hashimotos? Thank you for this article!

    Reply
    • Carly
      February 13, 2015 at 11:45 am (2 years ago)

      Hi Nicci,
      Interesting link isn’t it. I just googled and came up with a lot of stuff. I think there is a ‘perfect storm’ which occurs with autoimmunity but this is definitely a major factor for many of us it seems. If only I knew back then. lol. x

      Reply
  14. Emma
    May 1, 2015 at 7:36 pm (2 years ago)

    One of the best blog posts I’ve read for a long time Carly. Heartfelt, honest and….honestly? Right the way through I just wanted to give you a huge hug.

    Genuinely can relate to almost every word you say.

    Keep going….

    Emma x

    Reply
    • Carly
      May 2, 2015 at 11:50 am (2 years ago)

      Aww thanks lovely. I’ll take that virtual hug :-))
      Keep going too hon. Hope the blogging is going well. xxx

      Reply
  15. Clare
    August 9, 2015 at 10:08 am (2 years ago)

    Hi a friends just sent me a link to your blog as we are on a very simular journey, I was diagnosed with ME at 14 triggered by a flu like illness, then a viral menigitis at 17 (now suspected as lyme disease triggered) I also have autoimmune thyriod and as of last you a unusal autoimmune pancreas blood sugar problem, no one knows what type of diabetes it is) since 2008 I been having treatment for Lyme disease, it helped at first but now it’s just holding it at bay, I’m still mostly housebound, herbal medicine has been the most help to me. Good luch with you healing journey Clare

    Reply
    • Carly
      August 10, 2015 at 3:54 pm (2 years ago)

      Hi Clare,
      Thanks for the message. It does sound a similar journey and Lyme is coming out as a main player for lots of people at the moment. Who do you see for treatment for it? Sorry it hasn’t helped more. Really hope you improve further. I will keep updating the blog with progress and share anything which may help others.

      Yes I am in Kent – where are you?

      Best wishes
      Carly xx

      Reply
      • Clare
        August 10, 2015 at 5:42 pm (2 years ago)

        Hi I’m in Deal, so far I’ve been lucky enough that my GP has been prescribing Doxycycline, I also see a herbalist in Hythe. xx

        Reply
  16. Andy
    May 12, 2016 at 11:31 am (1 year ago)

    Thank for reposting this Carly. I have a 10 days headstart on you, having become ill on the 21 December 1995. Twenty years is a long time, isn’t it?

    I hope all the ME Awareness Days eventually start making a difference. Attitudes seem to have changed little since 1995 although there is more understanding outside of traditional healthcare if people are lucky enough to be able to afford it.

    Enjoy the sun!

    Andy X

    Reply
    • Carly
      May 12, 2016 at 7:04 pm (1 year ago)

      Hi Andy – such a long time I know. Sorry you are having a rough time at the moment. At least now we are both getting some more clues but tis crazy to think of how it could take so long I know.

      I actually have noticed a shift in opinions within the Nhs of late – and come across some very interested and really apologetic and compassionate doctors who know they could do so much more – if the system allowed it. Maybe one day it will change. Good luck in your own journey. x

      Reply

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