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.
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.
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.
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.
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:
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.
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.
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.
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.
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.
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.
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.
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.
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.
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