Is it my ME or could it be something else? We follow the clues ...

 

Life has thrown a few sticks of dynamite my way again. But by overdoing it one night my flare-ups are consistent in terms of time but I’m very rarely knocked sideways quite so spectacularly.

A weekend in late August included going to see The Bowie Contingent at a local venue, The Cutlers Arms. They were amazing - the lead singer makes each song uniquely his but with Bowie-isms thrown in. So talented and then a sleepover with my dear friend, Chloe. I felt almost normal! CBD top ups got me through and we were given seats just by the stage so we felt safe too. I stayed up past midnight, drank my weight in herbal tea, then slept. I don't remember Chloe going home but we had breakfast and i seemed quite lucid. How does that even happen? I then slept all day Sunday and most of Monday. No alcohol so AF beer for me but I survived being sober. Trade  off to minimise seizure risk, trade off  to minimise pain.Trade offs are how it is now. I almost plan for it.

On Tuesday, I was booked in for an EEG to investigate my seizures a little bit more. Imagine, if you will, that Hammer Horror film where the guy’s head is wired up to a machine. Add in the spiralling lights from The Prisoner that would cause No. 6 to pass out and that’s pretty much what my afternoon was like.

It brought on seizures lots of little ones then quite a long one. Once I was unwired I apparently went into the waiting room telling anyone who’d listen ‘it was awful - I just need to get home!’ and my mum led me away from a rather horrified queue of patients. 

I slept Wednesday and Thursday - I annoy myself on days like these as I get dressed and come downstairs to sleep all day as a kind of normality. My flare-up normal, I suppose.

I have felt super-groggy since Tuesday, like my brain feels fried and I feel really heavy (more than usual!) so it has been ‘Tools down’, sleep and Netflix.

Friday I went for coffee with Mum and our friend Helen at Cuccini’s (my local coffee place) where I do feel kind of safe - I’m not going too far at the moment. I was there in body but my brain was still wired up in that EEG room. Brain fog was off the scale.

Brain fog can make you feel as if your processes of thinking, understanding, and remembering are not working..

It can affect memory, including the ability to store and recall informationuse and understanding of language

• ability to process and understand information
• visual and spatial skills for drawing, recognizing shapes, and navigating spaces
• ability to calculate and work things out
• executive functioning abilities for organizing, solving problems, and planning

If one or more of these functions does not work effectively, it can be difficult to understand, focus, and remember things. It can lead to stress and mental fatigue.

Medical News Today

Claire Sissons June 12, 2019

 

 I slept until late Saturday and prepped lunch for my two of my closest friends - or should I say my brothers? They are part of my chosen family. We just chatted all afternoon and once we cleared up and they’d headed home I curled up to take more Gabapentin and rested. I’m avoiding my morphine and cbd just in case they’re adding to my seizures. I’ve been asking Dr Google and according to her, there may be some link to my hormones, as I’m in peri menopause which can start seizures. A drop in oestrogen can cause them.
 
But there is also a theory that some anti-depressants can cause them. There doesn’t seem to be a list of which ones so I need to ask about the safety of still taking mine.
With all this in mind, I also need to consider my use of cbd oils as there are possible links with, not the cbd itself but the chemicals that are added to some brands. This can also be through taking street versions and non-medical marijuana as chemicals are sometimes added to improve the taste. So by combining all my meds with cbd, this heady mixture might be an issue.  

Here I am coming back to my blog a month later. One of my longest flare ups. But I'm back and functioning at a rate that works for me. Slower than I'd like, my wings are clipped but the silver lining is that I've watched the complete boxset of Lucifer. Time will tell. Until my results come back, I'll be none the wiser. But wheels are turning. I'll know soon enough.