I was a healthy, young 47-year-old enjoying life. A party animal, I was always first on the dance floor and last to leave until one morning I awoke with every bone and muscle hurting, an intense, deep crushing pain.
Months went by without improvement, in fact I got worse. My symptoms included excruciating headaches, strange shooting pains, tingling, numbness, irregular heart-beat, face paralysis and total exhaustion. It got to the point where I was incapable of functioning. I was scared, you just know when something is seriously wrong.
When anyone asked me how it felt I would reply, “Today it feels as if I’m on a torture rack with my limbs slowly being pulled out of their sockets”. On other occasions I would describe it as someone hammering my ankles like the infamous scene from the film Misery.
I’ve never been one to rush to the doctors and it took me time to gain the courage to seek help.
I guess I shouldn’t be too surprised (given the lengthy list of ailments I presented) that my GP’s response was to raise an eyebrow and offer anti-depressants. My health continued to deteriorate yet I always received a similar dismissive response despite me telling them, “You don’t know me, I’m the strongest, happiest, person on the planet, I’m not depressed”.
I always left the surgery feeling patronised and thinking that they’d labelled me a hypochondriac.
Eventually I was referred to a rheumatologist, a huge scary man who manipulated a few joints, took bloods/X-rays and bellowed, “You provide a convincing story”. He diagnosed Rheumatoid Arthritis (RA) and prescribed medication including steroids. It made no difference whatsoever.
Within eighteen months I felt like I’d aged thirty years.
From time to time, I would try talking to my GP to raise my concerns of misdiagnosis, RA just didn’t seem to fit. It didn’t help when in conversation with my GP I casually mentioned I’d discovered a lump.
I was subsequently diagnosed with breast cancer, had a full mastectomy and a lengthy course of chemotherapy. I just got on with it. When you’ve been ill and in excruciating pain for so long, Cancer simply represented just another thing for me to deal with.
Throughout my treatment, I complained about my pre-cancer health issues muscle, bone, electric shock pain, insomnia etc. They put it down to my RA/Cancer. By definition, and given I’m writing this now, I am a cancer survivor and although in constant pain, I never forget I’m one of the lucky ones.
Seven years into my health journey, I finally discovered what was wrong with me.
I read an article about Lyme disease.
The more I read, the more I realised all my symptoms were classic text-book Lyme. A few months before I became ill, I was on holiday in the New Forest. While there I found a strange black insect embedded in my skin (a tick I believe), ten days later I noticed a huge 6-8 inch bullseye rash.
I have enormous respect for the NHS but any mention of the tick, bullseye rash and, according to NICE guidance, my indisputable Lyme infection, is met with ignorance. GPs and specialists seem clueless as to how this complex disease manifests and progresses. My rheumatologist’s response was, “Don’t be so silly, Lyme doesn’t exist in this country”. He is of course WRONG.
Consultations with two different infectious disease specialists didn’t go any better. The first, insisted the Lyme disease would have, “burnt itself out by now” and actually suggested I had MS (amongst other things). The second concluded it was ME and asked if “everything was alright at home” so, after fourteen years, I’ve returned full circle to the ‘depressed woman’ diagnosis!
I visited my GP to try one last time.
His response? “I’m afraid even if we get a specialist to join the dots and accept Lyme is the cause of all your health issues, they would not know how to treat you. There is nothing that can be done”.
I am left wondering why specialists are so willing to diagnose and treat me for any number of other serious illnesses – RA, ME, MS, but not Lyme?
Lyme is unpredictable and finds your weaknesses.
For me the disease causes repeated bouts of syncope, pneumonia and seems intent on creating havoc with my bones and nervous system. It’s incredibly debilitating and painful, but what hurts more is the absence of any kind of care or support. You are simply left alone to cope.
One thing is clear, Lyme disease desperately needs more investment, we need to raise awareness of this dreadful, life changing disease and substantially improve the diagnosis, care and treatment of Lyme patients.