Thank God for modern technology… because who knows what language I would be writing in, if I was left to my own devices of using the keyboard and my uncontrollable shaky hands. Although every cloud has a silver lining though right? It’s so much quicker to blog using a microphone as opposed to typing. To be honest, I was getting pretty fed up with the use of auto predictive text anyway and having to correct/explain why I’m in ‘ducking hell.’
As a blogger I feel it’s important to be open and honest with your audience as much as possible, but I also feel it is equally as important not to cause any unnecessary panic or worry for my loved ones , which is why I have not opened up until now about the progression of my condition.
As a Psychology graduate the brain and illness has always been an interest of mine but never did I think my own brain would be under the limelight. Placed under scrutiny and analysis. How very wrong was I … it all started with…
‘Dave WAKE UP! I think I’ve just had a seizure in my sleep…have I wet the bed?!’ …
-About a month and a half ago-
I was sat opposite my Rheumatologist feeling like a ghost of my former self. I explained a number of multiple new and worsening symptoms I was experiencing such as restless legs, fatigue, vision problems, numbness and tingling, muscle spasms, mobility problems, coordination problems, tremor, widespread pain over the body with ice and burning sensations, problems with thinking, learning and planning, depression and anxiety, bladder problems, bowel problems, speech and swallowing difficulties, crawling over skin/pulsing sensation over legs, migraines and headaches, heat sensitivity, hallucinations, freezing cold/wet leg sensations and tight chest. My Rheumatologist told me that he was going to immediately refer me to a Neurologist and told me that I would need a brain and spinal scan within the next two weeks.
As I had recently been diagnosed with Fibromyalgia as well as Lupus I knew my body was under a lot of stress, but I didn’t realise quite how much stress until I met with my Neurologist to discuss my results.
– 5 days ago –
My Neurologist informed me that we have to do further neurological tests including a SPECT scan of my brain and Evoked Potentials of my visuals, upper and lower limbs. The SPECT scan I am told, will look at bloodflow to my brain and identify any abnormalities, whilst Evoked Potential tests will include using electrical impulses to cause shocks to my body, to see how long it takes to reach my brain. I asked him what he was testing for and that’s when he said…
‘I’m sorry, but I’m almost certain you have Neuro Lupus, it means your lupus has spread to your brain and central nervous system and I believe that can account for all of your symptoms.’
‘But I’m getting married in 10 months , we’re about to book a honeymoon, what should we do?!’ I replied, trying to steady my voice. ‘Well’ he said…’I would hold off on booking your honeymoon just for now, but in 2 months time we’ll know exactly what we’re dealing with.’
My Neurologist advised me to research ‘Neuro Lupus’ so that I would be aware of what that to expect. After I read the first 3 lines ‘…Migraines, seizures, strokes, psychotic illness, inflammation of the spinal cord or brain’s blood vessels, paralysis, coma…’ I stopped reading and contemplated on how on earth he thought this was helpful?
Humour me … but can’t help but feel frustrated at the timing of this all …if only this happened a few years ago when I was doing my Psychology dissertation I could have used myself as a psychology subject! Pretty sure I would have got a 1st for originality ay?! However, life as I have learnt is never convenient. 10 months before my wedding is when my body decides to start shutting down. You can only imagine the immense pressure that puts on both myself and my fiancé. Particularly when suppliers are demanding on decisions to be made and I can’t even decide on how safest to make a cuppa tea without dropping the kettle, singeing my skin and giving our kitchen floor a new makeover! Jeez and to think just a couple of months ago, being on steroids and fitting in to my wedding dress was the main concern of my worries!
Thankfully we have a great support network around us which really helps. In fact I’ve been really overwhelmed with the support of some very special family, friends and colleagues. I’m so grateful to those people around me who have kept me grounded, whilst I am literally losing my mind!
Unfortunately now it seems we play a waiting game, waiting for these next tests and waiting for more results. I fear the more that time goes on, the more of myself I lose to Lupus. It truly is a continual battle, but I feel lucky to have a strong army by my side!
Thanks for reading all, I will keep you posted, Much love xoxoxox
For more info on Neuro Lupus and CNS involvement: http://www.lupusuk.org.uk/medical/gp-guide/clinical-aspects-of-lupus/cns-involvement/