I remember back in 2020, the unfolding pandemic was the least of my worries! I spent that spring lockdown feeling relieved that furlough was giving some respite from my busy job on the phones working for a holiday company in the New Forest, where I live.
It also meant though that I had plenty of time to worry, and my anxiety was through the roof: why was my blood pressure so high and my heartbeat so fast? As well as frequent headaches, adrenaline rushes and constant nerve tingling etc.? Worst of all, why was the ability to speak properly beginning to leave me? I was slurring my words, and it seemed to take a lot more energy to form a coherent sentence. I was under review at my GP with the menopause being suspected, but I was also being referred to a neurologist.
I was, and still am, a keen landscape photographer who loves the outdoors, frequently going into the forest at dawn and dusk photographing sunrises and sunsets. But during the summer of 2019 I began to feel out of sorts, with all the symptoms I have mentioned slowly gaining momentum and getting worse. I was unable keep up at work, dreading the late shifts as my speech would get worse during the day and towards the end of my shift, I was admitting defeat and passing my calls to colleagues.
But then it eventually dawned on me during that lockdown that Lyme disease was highly probable, especially given my lifestyle and the fact that ticks are prevalent in the New Forest.
I asked my GP to be tested and it came back positive. My neurology tests were all normal which I was grateful for, but it soon became evident that the NHS were not willing to join up the dots and entertain Lyme disease as the cause of my failing speech. I have had to turn to private clinics for more in-depth testing and treatment. Further tests also confirmed Lyme disease, plus several co-infections and the current specialist, whose care I am under, is in no doubt that my cranial nerves have been affected. I have now been receiving treatment in the form of IV and oral antibiotics plus herbs on and off for the last couple of years now.
I am a lot better, but my speech is still an issue, and I am having to face up to the fact that I may just have to live with it. Obviously, my job became impossible, so we lost my income as well as having to pay for the treatment.
Mentally it causes immense frustration and sadness, and I am still grieving a part of me that has been lost. I have an incredibly supportive husband and friends, but I don’t feel like I am very good company. I miss the simple art of chatting, instead of having to constantly compromise on what I want to say. It makes me very self-conscious about sounding unintelligent or even drunk! I hate phone calls, and I find myself worrying about things like having to call the emergency services or breaking down if I’m out in the car on my own.
On the positive side I am not bedridden or in pain as so many Lyme disease sufferers are. I still get out and about, and I still enjoy my photography. I have recently trained as a proofreader, and I have just started a writing course because I need to find another way of expressing myself.
This is a horrible disease. It affects everyone differently; it sneaks around the body mimicking other illnesses. I don’t recall an EM rash, but I am allergic to mosquito bites so I could have just assumed it was a reaction to that. I think I could have been a lot more vigilant though, and I really wish I had been diagnosed and got treated sooner; it could have saved my speech.