For this week’s blog feature, we’re sharing the story of Lyme patient Tracy Dopson, who wrote in to the charity with this piece on her experiences, and what she wants others to know.
If you’re often asked by friends and family how you are, and you don’t know how to reply, or how to explain how you feel. I’m sure many of you who have suffered with Lyme will be able to identify with Tracy’s words.
I was diagnosed with Lyme disease via an NHS blood test in July 2016 following not one, but two tick bites (both with the classic bull’s eye rash) following a short break away to Scotland with my partner.
So, fast forward almost 3 years!
Many people have been asking how I am doing lately. And my reply to others is the shortest and easiest ‘I’m fine!’
But the truth, the long answer, is actually quite complicated.
I am writing this because I know there are lots of others in the same situation as me. And often don’t really know how to answer this question. And sometimes, it makes people feel uncomfortable to even hear the response. But this is the truth about living with late stage chronic Lyme disease.
Occasional mornings I wake up and feel the best I can. However, suffer from many debilitating symptoms on a daily basis. Most days I have constant pain, brain fog and sensations in my nerve ending which feel like electric shocks!! Sometimes I am incredibly exhausted and fatigued. Some days I just about lift my head off the pillow, however I have to push through to get to work and remember who ‘I’ am because I am certainly not just this disease. Most days my body and brain can only handle so much and for me, these are the worst days. I have to find some strength to push myself. Why?? Because I am so determined not to be wholly affected by this horrendous disease. But still, I’M FINE!!
You might not realize it by looking at me. I can look fine. I may not look sick. And on the days I manage to put on makeup, I really don’t look sick at all. This is where it’s tricky for a lot of people. They see me out, going to work, having conversations, attending meetings, talking with lots of people, having a odd glass of wine at weekend (or actually a rum and coke, as I was clearly a pirate in a previous life!) But if only people knew… it really is the complete opposite.
I force myself to do those activities. Because I need an absolute sense of normality. I need to get back to my old self and life. I want nothing else in this world but to be healthy. So there are some days, you may see me out and about, looking perfectly healthy. But only those very close to me see behind this utter falseness and witness those days Lyme disease gets the better of me. The days I cannot get out of bed without awful pain and a tiredness that is hard to imagine. The days I cannot get my words out in the right order, cannot complete sentences, forget the simplest of words or even open my eyes. The days my family have to do everything so I don’t crash even further. This is the part about Lyme disease and other chronic illnesses that are very scary and misunderstood. BUT I’M FINE!!
We all want to be healthy and be able to go about our daily lives like we used to. But many things have changed for me over the past couple of years. And adapting to those things is extremely hard because you don’t want to let go of who you once were and all of the things you used to do and enjoy without feeling pain or having your energy levels seriously affected.
So yes, I am sick. I have chronic Lyme disease and a whole host of other complicated co-infections too including severe spinal problems of which I am likely to need spinal surgery. And for most of the part, they are all invisible illnesses. But, I’m fine!
I am doing everything in my power to get better. For the past couple of years, every day of my life, I have been fighting. And I won’t stop until I reach a point where I can really say I have beaten this. (AND OH, I’M STILL FINE!!!)
June 2019 copyright
Thank you for sharing your story, Tracy!