Our second guest blog post is from UK patient and LDUK group member Tony Bent. Read more of his blog here http://tonybent.wordpress.com. If you have a blog you would like featured, please email firstname.lastname@example.org
So my body is in safe mode. I remember reading about this analogy some time ago – when you have a chronic infection, that the body cannot easily get rid of, you reboot into a state where key survival bodily functions are protected at the sacrifice of other less important processes. It makes you feel like shit, but you live – and reach equilibrium with the foreign invaders that your body has decided it can’t get rid of.
Throughout 2011 I was hospitalised with recurring pericarditis, pleuritis, pericardial effusions, high fever, flu symptoms….. This was diagnosed as ‘viral’ as blood cultures were persistently negative for bacterial infections – a diagnosis of exclusion. Treated with anti-inflammatories and pain relief, I would return home after these hospitalisations, which is when I noticed this new feeling slowly taking over me. Fatigue. It’s a little word, that people think they understand, that I used to think I understood too. Until you’ve suffered from realfatigue, believe me – you haven’t got a clue.
I was getting a hair cut that summer (2011) and the hairdresser said to me “Fatigue? Yeah it’s weird – I feel really tired after a hard day’s work too”. Nah mate. Fatigue is waking up in the morning aching in every muscle and bone in your body, like you’ve just run a marathon. Everything down to the tiny muscles between the joints in your fingers. Getting out of bed is a chore… you remember how waking up used to feel, refreshing – you stretch your muscles and get up and go. With fatigue you crawl out of bed and everything is a struggle. You know what type of day is coming then. ‘Walking through treacle’ is another phrase commonly used. You struggle to wash properly or do simple household chores because your muscles can’t hold your hands up for long enough.
You can’t do anything that requires effort without feeling discomfort or paying the price later. Sometimes you won’t even feel the repercussions until 1, 2, 3 days later. It’s something you manage over time, you work out what you can and can’t get away with. For me it’s a constant battle of mental vs physical. If I’m finding that my symptoms are restricting me too much, it’s easy to get down or depressed – so I’ll go out and do something that I shouldn’t, like a long walk, work on the house, throw the kids around….then all is better mentally, I’ll worry about the physical effect tomorrow.
Unfortunately for me in late summer 2011 after another stint in hospital I was treated with prednisone, an immunosuppressant steroid to treat the pericarditis. I was weaned off of this medication after a couple of months I felt the fatigue creep back in with a vengeance, and it’s at this time I think I developed neuroborreliosis – where the Lyme bacteria penetrates the brain / spinal chord and gives serious neurological symptoms (resulting in Encephalomyelitis in March 2012 – something I hope none of you ever have to experience).
For me fatigue affects the brain too –especially after the onset of neuroborreliosis. Most Lymies suffer from ‘brain fog’ – this feeling is so hard to describe…. It’s a kind of dizzy feeling where everything has slowed down – you struggle to talk for long periods as you can’t process the words quick enough. Simple calculations seem like advanced calculus. It’s a kind of hang over feeling but without the satisfaction of making an arse of yourself the night before. For me – pushing this mental fatigue to the limit ends up in total mental breakdown. I remember the first time it happened, before my Lyme diagnosis – I was attempting to return to work after being off sick for 6 months. The tasks I used to at work (I won’t bore you with the details) were all of a sudden beyond me, it was very hard to recall things stored in my brain somewhere – like trying to run GTA5 on a ZX81…. Confused by this my brain fog would spiral out of control, my already present noise sensitivity got acutely worse so that distant conversations couldn’t be filtered out – a heightened fight or flight response. I had visual disturbances where my brain couldn’t process the images my eyes were sending my brain – the final result being tears, going home and hiding under the bed covers until it passed. This happened a few times to me until I understood what I was dealing with (most embarrassing was in the middle of Lakeside shopping centre with my wife Kate and baby daughter Rosie – who was born amongst all this going on in June 2011).
After my diagnosis, LOTS of reading and research and meeting people in the same fucked up situation as you (I’ll get to that another time –but let’s just say for now that you cannot believe the anger that burns down inside of me) I worked out that pushing yourself to this threshold of being counterproductive is a skill you develop as you want to feel better, you want some quality of life, but you don’t want to go backwards. I’m convinced that pushing myself in this way has speeded up my recovery.
It’s now nearly November 2013. My physical fatigue has improved – I can pretty much do anything that a ‘normal’ person can do, apart from cardiovascular (my diagnosed cardio accelerator problem is a bit of an issue – my SNS is a bit screwed, something called Dysautonomia). Days out with the wife & kids, playing in my band, walking the dog – all things that mean a lot to me, I’m grateful to be able to do.
Mentally though, it’s still a struggle. I was doing very well in the summer, but have taken another downturn recently – currently I’m disappointed that I can’t seem to do more than 4-5 hours’ work without my brain fog spiralling down again. I’m grateful to have not had any serious symptoms for 18 months – and by serious I mean pain like you wouldn’t believe, trigeminal neuralgia, pericarditis, pleurisy,encephalitis, myelitis….. Lyme at its worst can wreak havoc.
They say what doesn’t kill you makes you stronger. When it comes to Lyme Disease, I say that’s bollocks.
Shit, this turned into more of a rant than a blog….
Anyway….. this bit is for the Lymies who are struggling. Someone told me when I started treatment that this would be a long journey – and it’s one you just can’t prepare for – when it’s going well you think ‘YES!! I’ve finally made it’, when it’s going bad you think ‘SHIT!! I’ve not made any progress at all – AARRGGHHH!!!’… but this is how I see it; my chart below is a rough plot of my health over time – starting from the tick bite & EM rash, steadily going downhill until my serious (aforementioned) problems started. The important bit is the red line – which starts at my diagnosis and treatment, it’s a trend line that (after the initial herxing) has a positive gradient (for all you maths fans out there high five).