‘Every single day I either need to push myself or pace myself………..’ The reality of living with late stage Lyme disease

Tracy Dopson, LDUK member, shares her story of living with late stage Lyme disease during the COVID-19 pandemic.

Thank you, Tracy for helping to raise awareness of the symptoms and challenges of living with late stage Lyme disease.

“Quite a few people have been asking how I’ve been doing lately, having Lyme Disease whilst living with this awful  COVID-19 pandemic. And the short, perhaps easiest response is, ‘I’m fine thanks, how are you doing?’

But the real truth to be honest, is actually quite complicated. 

I am sharing this because there are probably other people in very similar situations to me. I’m assuming others with chronic, hidden or invisible illnesses too don’t really know how to answer that question either. 

But, this is my story and the real truth about living with late stage chronic Lyme Disease whilst trying to manage the very real effects of the horrendous COVID-19 situation in a personal way.

Most mornings I wake up and feel the best. But, I have many symptoms to actually manage on a daily basis. There are lots of days I have constant pain, real tiredness (fatigue), memory problems, headache and sensations in your nerve endings which actually feel like electric shocks!

Sometimes I feel so incredibly exhausted I simply just don’t know what to do to help myself. But I push through to simply eat something, chat with or text my closest family/friends and at best, go to work.   Going to work is really important to me.  I absolutely love my job and the people I work alongside!  I’m constantly managing risk and adapting what I need to do to keep myself and others safe (as we are all doing at the minute). 

I also desperately want to do physical activities to help improve my physical health and even more importantly, maintain my mental health and wellbeing too. I have recently started the Couch to 5K programme and although it’s a 9 week programme, it’s taken me 19 weeks to get to week 7.  This is a huge achievement for me and I’m really aiming to complete it.

Every single day I either need to push myself or pace myself.  You might not realise it by looking at me. I look fine and don’t look sick.  That’s simply because I’m so determined not to be wholly affected by this horrendous disease and even more so, to keep myself safe and as well as possible with this pandemic.

The days I put makeup on, get dressed I often say to myself, ‘wow, you really don’t look sick do you, that’s fab’.  And this is where I believe it’s tricky for a lot of people too. That’s because others see me out and about trying to improve my physical health (emphasis on the word trying!) going to work, having conversations, having meetings and talking with lots of people and having a glass of wine (or occasional rum and coke) at weekend and I actually look OK, I look fine, I look healthy. 

But to be really, really honest, it’s absolutely the complete opposite. I often force myself to do those activities. I need a sense of normality and actually, so do most people at the minute.  I need to get back to my old self and life before contracting Lyme Disease and before the pandemic. I want nothing else in this world but to be healthy and stay healthy.

But only those very close to me see those days which are a real struggle.  The days it’s hard to get out of bed with pain and tiredness that’s hard to imagine. The days I struggle to get my words out in the right order, complete sentences or even open my eyes at times. The days my family have to do everything at home so I don’t crash even further and remain in work, doing a job I feel so passionate about.  This is the part about chronic/hidden illnesses which is very scary and completely misunderstood. The part that many people living with other invisible or hidden illnesses would totally understand. 

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 few years, adapting to those things is and continues to be extremely hard. I don’t want to let go of who I once were and all of the things I used to do without feeling pain or having my energy levels seriously affected. I think I’m quite a resilient person.  I try to remain optimistic and positive about whatever life throws at me which is easier said than done some times!

So. I have neurological Lyme Disease and a whole host of other complicated co-infections too including severe spinal problems which I will need to have surgery for at some point in the near future.  I am doing everything in my power to get better and raise awareness about the impact Lyme Disease has on individuals and their families where I can. 

For the past few years I have been fighting a very real battle. I won’t stop until I reach a point where I can really say I can live with this in a way that only I can be ‘ok’ with. And, actually I’m really getting there! I am incredibly lucky to have such amazing family, friends and work colleagues.

For everyone else in similar situations, battling chronic and often invisible illnesses whilst trying to keep themselves safe in this strange world we are living in at the minute, let’s understand better and listen to each other.

So, if this helps others, stay strong, really share how you feel honestly with others, be kind to yourself and support each other ❤️”.