Stage 3: Meaningless Shock
1-2 Years After Diagnosis
The beginning of this phase was Hell.
Not only was I dealing with my own MS issues, but I also had to cope with society’s perception of MS and chronic disease.
Some of my friends deserted me either immediately or over time. That hurt.
My family were devastated. Never will I forget my father’s ominous words: “MS is a punishment”.
That shook me to my core. Punishment for What?
The ‘relief’ at the diagnosis soon turned into total shock, then hellish pain and intense, often violent psychological and emotional trauma.
Physically I felt like an Egyptian mummy: I was swathed in medical tubes, hospital bed linen, incapable of moving and intoxicated with pain killing drugs and powerful steroids.
My mirage life was replaced by a with a drunken like haze. It was like being in a permanent hangover without the preceeding ‘High’!
Of course, I was in no fit state to work, so resigned from our Company. What a failure I felt.
Then I hid. Our beautiful country home provided the refuge I needed.
I should have had the emotional maturity and gratitude to understand and accept my situation, and make the most of it.
So I hid in our beautiful home and indulged in temper tantrums, wild accusations and imaginary fears.
Round and round in my head were those BIG questions: WHAT had I done to deserve this and WHAT was I being punished for? I lost my sense of identity, self respect and hope.
I imprisoned and strangled myself with ego dramas, analysis paralysis and control complexes. I became twisted in my sobriety.
Not nice. But true.
My husband got the brunt of all this crap. Imagine how he felt!
Even more to his credit, he turned down my offer of divorce, which I made once I knew the diagnosis and how hard it would be for him.
He chose to stand by me.
Although we are now separated, I will always respect and love him for not ‘running away’ in the heat of the moment. His continued support to this day, including with this site, has been special.
He sacrificed much of value to him: our lovely home, his friends, our Company for my health.
You see, when it became obvious that the cold, damp UK weather was literally crippling me, I decided I had to leave the UK, while I still could.
I knew intuitively, and from all my travels, that my body responded well to warm, dry climates.
What I didn’t know at that time was how beneficial Vitamin D is on MS, especially in the form of natural sun light.
So I suggested a move to sunny Antigua in the Caribbean. It was a hell of a decision to make, given the sacrifices necessary. But at that point, all I knew was that I was deteriorating rapidly, and I needed to give myself the best chance I could to pull through.
(Don’t worry! By tapping into my current knowledge you won’t need to uproot yourself from your family and familiar surroundings to benefit from similar improvements to those I now enjoy.)
Isn’t it strange how clear things can become when facing disaster? This clarity reminded me of my RAF experiences.
In extreme situations, options are limited. Decisions and actions must be quick. Indeed, it’s often this speed which determines whether you live or die. There are no shades of gray on a battle field: black white or red.
Red for blood.
Maybe that’s why I could make the decision to move so quickly.
Amazingly, given my poor behaviour, my husband both supported the decision, and moved too.
The next events seemed to happen quickly. We sold our beautiful house, our established, successful company and said bye bye to friends and family.
On a crisp, cold morning in November 2000 we left England.
A New Start
Caramia and Max at Galley Bay Antigua
Antigua was indeed a wonderful opportunity to start afresh. The warm dry climate and greater outdoor life with regular beach walks and swims were (and still are) Heaven for me.
I felt Very fortunate to have been able to make and finance this radical change.
Positive results happened relatively quickly:
- My health slowly improved.
- We started developing online businesses, which after various false starts have culminated in this and related sites.
- I became fascinated about understanding myself and MS better and started in depth medical research.
Caramia swimming with Montserrat Volcano in the
background, taken from our then home in 2003
By this time I had stopped all medication. It was neither easy nor cost effective to get the right stuff in Antigua. And I didn’t feel I needed it so much. I had begun to wonder if it was largely the medication which was making me feel like a zonked out zombie most of the time.
Yes, I was in some pain and had bad spasms, but these lessened as my medical research and networking enabled me to learn about the right nutrition, supplementation, exercise and attitude.
I also had some very upsetting incidents, like when I still walked with great difficulty....I would go for ‘walks’ on the beach, but sometimes the pain was too much and I had to crawl.
Imagine the surprise and often amusement of the locals to see a white woman crawling on the beach! Yes, sadly many felt good about it: seeing a white woman in pain. Some didn’t, and they were eager to help.
Today, these same people look at me with amazement. And some embarrassment too. One called me a ‘witch’. Then she apologised when she realised I could help her!
Gradually life began to look more hopeful, even though I was hindered by my feelings of confusion and guilt about my MS.
For sure my research into MS was unearthing fascinating discoveries and giving me hope......
The ‘Meaningless Shock’ of Stage 3 was like a Transition or ‘Rites de Passage’.
I had to go through the depths of despair and pain to be ready for and appreciative of the next Stages.
Certainly, fundamental self understanding and physical recovery had begun. But I had a long way to go.
Indeed, my ‘inward travels’ to explore and resolve my deeply rooted inner turmoil were frightening. Especially as I didn’t know if I would like what I found!