I can pinpoint the exact date my catastrophic downward health spiral and hence my journey living with Autoimmune Disease (and CFS) 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…
(Which I know are completely unfounded.)
And 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 know that the stage was set for my Autoimmune Disease + CFS (and overlapping health complications) 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 likely unknown past infections.
Add to this a complete lack of any healing knowledge (on my part) and you can get a sense of the overwhelming chaos.
Thus, 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 and missed life trajectories which takes this type of severe chronic disease to a level most simply cannot imagine.
Actually, what happened was that although I initially picked up a little from the acute stage I never really recovered and eventually I was diagnosed with ME/CFS. Yet, even then 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 time being, and during the first 5 years, that this was going to get worse before it got better.
And I was right.
Following University I became bed-bound and severely poorly in a way I cannot even describe. For a couple of years perhaps. I couldn’t cope and I didn’t. I broke down. survived. Just about. Progression to being primarily housebound then cuts a (very) long story short to fill you in on the extremity of it all.
People ask me how I felt during the worst phases and I had no sufficient answer. All I could manage was;
“It is like having the worst hangover combined with the Flu, and x 100.”
“Running a marathon on no food?”
And of course as the body faces this onslaught it sends out constant stress signals meaning severe anxiety regularly occurs from a physiological level.
Yet of course the truth is still always a million times more complex and my words lack the insightful conciseness and accuracy needed to portray this physical and mental nightmare. I didn’t understand what was happening to me (back then) 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. Fear ever present and sky high. My family my everything. A million feelings impossible to convey nor process. 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 lives 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 again the path was too rocky. As time went by the diagnosis’ (and labels) built up to include POTS, Hypermobility, mild Lupus, potential Addisons and more. Nothing was getting better I was just painfully trying to ‘band-aid’ a few things along the way. Thus, I knew that there was still something major which we were missing. Something to under pin it all…
Slowly my mindset began to alter as I understood more than the mainstream doctors seemed to. As I understood the hidden controversies and limitations of a health care system. Fundamentally I wanted more than the offers of drugs which mostly didn’t work, and which would only add more stress to myself system over time. I was (and am) committed to healing and recovery at the deepest levels. Open to ALL models of health care I continue to become my own best doctor and to experiment as I go, and as I am able to access leaders in the field.
Don’t get me wrong if a drug is a good fit and works I will take it happily and be grateful. But, for me, it’s been… complex… and at this present time (2018) my body is rejecting all medication and even basic supplements, and the last few years have been ones of relapse.
And yet, deep within I still trust. Amongst the sadness and despair there remains hope. And more than this there remains trust. That I will rise. And shine. That I can try to – even from here. That I can fail – because I am here – too.
A life very much of lessons and great tests which cannot be trivialised. A reality which cannot be ignored, and which I am no longer in any way ashamed of sharing or expressing or feeling.
In late 2014 (19 years from the onset) I managed to discover the first real clue to understanding how my symptoms and conditions all fit together – when private testing (overseen by a professions at Kings College) revealed a positive Parvo B19 Virus result. This was the clue which confirmed that ‘immune dysfunction’ was at the core. The crucial part was that although this flu virus was active within my DNA, my IGM antibodies were negative meanin that my immune system is no longer responding to it – which is very rare.
Alas It seems that in fact really I have indeed had the Flu for 22 years!
Proof at long last and an extraordinarily bittersweet answer which rocked my world!
Shock. Amazement. Relief. Gratitude. Hope.
Euphoria and a million questions arose……
“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 afterwards. And clearly the environment was ‘right’ for me to be affected so dramatically.
However, most people do get over Parvo Virus, so still something niggled? Especially when we realised IVIG treatment was ethier accessible nor advisable in my weak state.
I knew there was more digging to be done…
From here Lyme Disease was brought into the picture as a potential reason why my immune system was not responding right. And entering ‘this world’ has led me to much more understanding of the whole picture around infections, toxins, and chronic illness. The body can only take so much. Too many triggers (mentally and physically) will eventually be felt – within the right circumstances/environment – and from here there is an inevitable downward spiral as all the systems crash and the immune system no longer even attempts to stay on top, and further infections and pathogens take residence.
As more and more accumulates and the system weakens the ‘backtrack to health’ is as potentially dangerous as it is difficult. It is a vulnerable and precarious position, hence I live in a body which feels often as though it can barely tread water. I certainly did feel as though I was drowning back in the worse days. And many times since. But somehow I am stronger within myself at least, even if recently I admit feeling close to breaking point once again. I use all the tools I have learnt, and I practice mindfulness and gratitude as my soul hopes I can find a way out of the maze. As I (recently) fully begin to allow my heart to speak and feel and release. As at my most rock bottom I am guided by something ‘ higher’. Because I won’t deny that there is a lot of trauma being so unwell for so long – without a break.
My wish that my current knowledge had been there at the beginning a fruitless one, the fact is that at this point, this far down the line, recovery is as complex as one can imagine, and I will never know for sure the true order of how it unfolded, only where I am currently at.
So, just how do you even attempt to unravel 22 years, and put the pieces (and yourself) back together?
You do with courage, strength, intelligence and tenacity.
And above all else you do it with faith, spirit, belief and truth.
You find your true soul beneath the illness and you both feed and shine it constantly.
And you feel what needs to be felt. And you release the emotions as you go.
You somewhat lose expectation.
You find connection, purpose, meaningful friendships and support.
You aim to access flow and self-love as your anchor.
Recovery and healing begins with yourself. You need to find the root causes and initial triggers and question if your CFS could be infection based. 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. In fact, I cannot quite believe how much so. Genuinely, for all the work, all the simultaneous commitment and surrender, it feels dreadfully unfair. And yet, I cannot think this way. But I can feel the frustration of it, and lose the judgement of doing so.
Alongside this you need to become your own best Guru because inevitably this journey leads you along a soul path too.
And that is perhaps the real blessing.
Here are my 8 top tips for creating the Mindset you will need when living with Autoimmune Disease:
To begin to get over something you firstly need to acknowledge it, and this is the tough part. You must face it even if in stages as you go/grow. 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. However, as time goes by, acceptance may also mean changing your visions if they don’t end up playing out – and allowing yourself to feel the loss of this. Acceptance is about accepting yourself and where you are. It is permission to be exactly who you are regardless of what is unfolding.
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 self, and to calm the nervous system down. 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.
Kindness + Love:
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, take the pressure off, and be proud of yourself. Indulge in yourself often. 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. Release it all and forgive when you can.
Lose the shame and be open and truthful. Face it yourself too and use writing as a form of expression. Feel what you need to feel and share with close friends. There is grief and loss and fear which you should acknowledge, but also know that illness does not define you nor decrease your essence and worth within the world.
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, and learn to love the wellness world. Absorb all the knowledge out there and become your very own best doctor. Don’t be swayed but the ego and other people. Trust your own instinct and be prepared to consider combined approaches and concepts. Be prepared to take time off and surrender too if this feels right, because most of all healing is about being intuitive.
Find your passions and indulge in creativity and play for the fun of it. It will remind you who you are at heart and may well lead on to purpose – as my own writing and blogging has.
Finally the stage will be set to implement all these changes and to dedicate your life towards this action plan of healing and spiritual growth you have created. Courage will also be needed each time your plan fails. Each time you are backed against a wall and can see no way out. Courage will be needed the most when you don’t see results, and when you have to begin to challenge yourself without better health. But you have it in spades. You would not be at this point if you didn’t.
Action + Growth:
This only requires baby steps and it doesn’t mean that there won’t be set backs unfortunately. Just stay brave, stay strong and continue to nurture and nourish those foundational roots which you are building. Or at least set the intention to do so. The smallest action (physical and emotional) can trigger the greatest result. It all counts. Above all be open to the flow of life as a mantra, and see this as a journey towards growth and expansion – however it unfolds.
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 our own. More so than I could even 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 too. 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 + CFS + Lyme 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.
This is simply my journey which I navigate as I go…
Read more about my story here.
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