Where do I start? So much has happened and so much happens daily.
In 2003 my now ex-husband and I went to the Canadian Rocky Mountains on our honeymoon. At the time I was 42 and extremely physically fit, a passionate member of the gym for many years.
While there I was rushed to hospital with breathing problems. This became the first symptom of over 100 that I eventually developed through this evil and ignored disease called Lyme.
Back home, I returned to the gym. While there I became so dizzy I felt as though I was in a washing machine. It was nothing like ordinary dizziness. That same day my friend noticed an odd-looking rash on my back, but I simply disregarded it. However, as the days went by I began to feel very unwell with flu-like symptoms. My whole body hurt and my head felt as though it was going to explode. A few days later I started suffering from vertigo--the room was spinning so fast I held on to my bed for dear life. I reluctantly went to the Doctor, where I was told, “You have vertigo. Take these tablets and it will go away.” It did go away for a while, but since then it has often returned.
The next event was the scariest. I woke in hospital, my husband by my side, after having a massive seizure. I knew nothing about it and I said, “Who was that, where am I?” I could not see properly, and again my head felt as if it was exploding! I was kept in on that occasion. I had to visit A&E many more times over the next five years.
For many months I had MASSIVE headaches. Measured on a scale from 1-10 they were 50! Weird things happened on most days. My face started to twitch along with other muscles in my body, and I experienced what felt like electric shocks in my head as if someone had put 1000 volts through my brain.
In between all this--being a gym-loving girl--I carried on regardless, often feeling too weak to exercise, but I'm a determined soul. No one ever knew just how dreadful I was feeling. Yet, from the last week in Canada, my life was never to be the same again.
I endured regular trips to the A&E over the next few years, before and after my husband left me, where they always tried to convince me that it was all in my head. Well, it sure was, but it was also creeping around my body, to my joints, heart, brain etc. I remember lying down relaxing and being so scared when I felt something rushing through my body as if life was draining from me. I thought maybe I was just overdoing it, but I was determined to carry on.
As the extreme ill feelings passed every few weeks, I thought I could then get on with life. My mouth became dry and I could not speak properly. I was like a rag doll for hours afterwards. Strangely though, I could get up the next day and feel OK. I still went out socialising, and to the gym. I also cycled everywhere! Nevertheless, all the time I had bouts of illness that led to yet more symptoms. Now, six years on, the symptoms are far worse. At times I cannot even hold a glass of water.
The symptoms that accumulated within the first year included: eye problems-–I could only see half of anything-–pain behind my eyes, floaters, “dancing” face, tinnitus, nausea, loss of hearing in my right ear (I had an ENT test), acute sensitivity to noise, hyperacusis, blackouts, painful joints, insomnia, seizures, exhaustion--sleeping for days--balance problems, pins and needles throughout my body, brain fog, and extreme fatigue. I often felt like I was losing my mind.
I was admitted to hospital several times within this first year, yet was treated for nothing. My husband had done some research on Lyme and all my symptoms fit perfectly, so I requested a blood test for Lyme, knowing by this time that the rash may have come from a tick bite. The test came back negative. This often happens, because the NHS test for Lyme is inadequate. I asked for preventatives and antibiotics but was refused.
There are over 300 known strains of Lyme worldwide. Where you're bitten makes the difference to the strain and the co-infections. Ticks carry more than just Lyme disease itself--for instance Babesia, Bartonella, Ehrlichia, etc. can all be in the gut of the tick. As it is feeding it spews back the contents of its stomach leaving you with a nasty concoction of disease.
By late 2004 my symptoms were getting worse, including bad allergic reactions and rashes on my face. All my joints were hurting. I suffered cramps in all muscles and lost cognitive ability. I developed night sweats, yet felt the cold intensely. I experienced fevers, chest pains, air hunger, heart palpitations and breathlessness. I craved sugar (normally, I don't have a sweet tooth), suffered numbness in several limbs, together with persistent lethargy. I had a constant vibration in my head and at times my right eye started drooping. I suffered intense lower back pain and my legs would completely give way. Besides all this I developed unexplained anger--rages--now known to be "Lyme rage."
By June 2007, my health had worsened to such a degree that I was confined to bed for days on end.
Part 2 Friday.