Thank you all for your phenomenal response to my request for prayers. I have had messages, emails and blog comments galore, and I am honestly so grateful. The past two weeks since Charlotte started fitting have perhaps been the worst two weeks of my life. For three years we have battled through one symptom after another. Charlotte’s life has been turned upside down as we have watched on helplessly. But I have always taken comfort from the fact that none of her symptoms were dangerous or life threatening. They were a pain in the neck (sometimes literally) but at no point did they pose any danger to Charlotte. The fits, hallucinations and headaches that seemed to go along with them were another matter. It wasn’t necessarily that at the moment they were dangerous, it was more what they could mean…I honestly fought and lost the fight for the Peace that surpasses all understanding. I was deeply entrenched in an agonizing terror that this might be the one symptom that could kill Charlotte.
Yesterday we saw the neurologist. I can’t say that I took to him at all, but my goodness was I relieved by what he had to say. Gary and I were praying for the seizures to be non-epileptic ones and even more fervently praying that cancer was not the cause of them, especially since the hallucinations had started. When the consultant said that her presentation (she was fitting on and off in front of him and we had some video footage of when they were particularly violent) was more symptomatic of non-epileptic seizures than epilepsy, I very nearly hugged him (in a very non-Covid manner). Instead, I did the very adult thing and burst into tears, as my daughter took my hand and comforted me. Yes, I am not quite the grown up I thought I was. But I was so relieved I literally (for about the third time that week) balled my eyes out. The official diagnosis is Non-Epileptic Seizure Disorder, usually brought on by stress or anxiety, and completely safe and completely treatable. He is sending her for a brain scan (today) and after that, if he feels she needs it bloods and an EEG.
Assuming the scans etc are all clear, we now have three official diagnosis which explain every single symptom and allows us to move forward. Charlotte has Fibromyalgia, ME (Chronic Fatigue) and Non-Epileptic Seizure Disorder (ironically probably brought on by the stress involved with her (ill) health). We have all reacted in some way or another. Thomas, Ads and Gary have all stepped up and offered Charlotte and Lillie all the support they need. Becca has cried a few tears, and both Becca and Abigail are just relieved that things will now return somewhat to normal. And I have stopped crying 😁
Lillie, however, has completely fallen apart and has had a morning long breakdown. Bless her. Lillie has really taken the brunt of it all. Charlotte is her twin (and you will only understand the significance of that if you are also a twin, or perhaps a mother of twin). When Charlotte hurts, Lillie hurts. She is also the one that Charlotte sleeps with at night, and has, in particular over the past two weeks, had many many broken nights of sleep. I offered to sleep with Charlotte last night whilst Gary offered to sleep on the sofa, to allow Lillie a night on her own in our room. She refused point blank. She could not even contemplate one night of not being her sister’s primary carer.
The plan is to get Charlotte Cognitive Behavioural Therapy to help give her some strategies to help her manage her pain, as well as teaching her to control the seizures. She is also going to join some support groups so that she has friends who completely understand what she is going through. For the rest of us, the goal is to return to some sort of normality. Out of necessity, Charlotte needed to come first for a time, but now we need to recalibrate and find a better balance for our day to day family living.
The last few months have been horrible, but thanks to my mum blessing us with private health care, thanks to the knowledge and wisdom of the consultants Charlotte saw and thanks to many, many people praying all over the world, I believe that the tough times are over. It is onwards and upwards from here on out.
At least it will be once Lillie has had the rest and recuperation she well and truly deserves.