Living with Autoimmune disease

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 best friend 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 and be living with autoimmune disease today?

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 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.

Much worse.

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 for the following 2 decades + then cuts a very long story short.

People ask me how I felt during the worst phases…

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

Or perhaps;

“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 and emotional 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 or 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 my 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.

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, as sadly 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 belief in magic and possibility. That I will rise. And shine. That I can try to – even from here. Even though I fall often. That’s okay.

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.

The truth sets us free.

In late 2014 (19 years from the onset) I managed to discover perhaps the first real clue to understanding how my symptoms and conditions fit together when private testing (overseen by a professor at Kings College hospital, London) 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 meaning 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 when I read the results……

“Maybe now I can stop blaming myself ?”Was one of my first surprising thoughts.

“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?Was another.

“But how was this not found earlier?” My broken and spirited heart raged.

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 the suggested IVIG treatment was neither accessible (in the UK) 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 – 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. Further infections and pathogens take residence and the picture gets a million times more complex for the lack of initial help back in the acute stage.

The ‘backtrack to health’ now becomes 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 too, even if recently I admit feeling close to breaking point once again. I use all the tools I have learnt, and I practice mindfulness, self-love and gratitude willingly. My soul ultimately hopes I can find a way out of the maze, and I now allow my heart to speak, feel and release along the way.

Knowing now that I am worthy and valuable – regardless of circumstance.

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, but there is magic when you are forced to truly face yourself too. Both.

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 23 years, and put the pieces (and yourself) back together?

You do with courage, strength, intelligence and grace.

And above all else you do it with faith, spirit, belief and truth.

You find your true soul beneath the illness and you feed and shine it constantly. And you feel what needs to be felt. You release the emotions as you go.

That’s very important.

You somewhat lose expectation, and you embrace connection, purpose, meaningful friendships and support.

You aim to access flow, and grant self-love your anchor.

You begin to love the true you.

Recovery and healing begins with yourself. You do need to find the root causes and initial triggers and question if your CFS could be infection based? 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 at times hard to even breathe with the weight of it all. 

C’est la vie.

Alongside this you need to become your own best Guru because inevitably  this journey of living with autoimmune disease will lead you along a soul path too.

And that is perhaps the real blessing.

Living with Autoimmune Disease

The story continues in part 2 …  8 top tips for creating the Mindset you will need when living with Autoimmune Disease.

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