Mastodawn

Good morning folks.

It was a lot cooler last night and I slept so well, I also started the Travis Baldree book that was sitting in the tbr pile, so the child will get the book soon and can stop nagging me for it.

Today is FND awareness day in the UK. Trust me to get diagnosed with it, just in time for the awareness day 😂 Honestly wish I looked as healthy as purple sparkle brain person in the picture 😂 For me, FND is pretty shit and affects every minute of my day, the more tired I am, the worse it is. Some days I can "trick" my body into behaving, but those days are few and far between. The biggest impact it has on me is functional limb weakness and speech difficulties, oh and the tremor is pretty bloody awful too. The gaslighting from the GP for years has been pretty awful too, had me thinking I was losing my mind. It took me being hospitalised with a suspected stroke for my GP to take me seriously and refer me to neurology, then the year long wait for the appointment. Getting diagnosed was a huge relief, even if neuro don't think I will get any better, at least they think I won't get any worse (or not anytime soon). So yeah, I'm going to share about awareness day, and then promptly forget it and go about my day.

Time for more coffee, Cozy Grove and then I might venture outside.

Have a lovely day everyone 😊

#GoodMorning #FND #FunctionalNeurologicalDisorder

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HeatherMJ

@JustFi
Morning Fi. A 24 yr old with FND was featured on our local news last night. Covered well, including her criticism of her local hospital, Addenbrookes, lack of support. So pleased your consultant sounded more validating. Hope today is a good one x

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Fi 2d ago

@HeatherMJ The lack of support is awful and no doubt in time, I will shout about that as well. I have gathered so many coping mechanisms over the years, already know the physio things that might help and do those, know what works with the fibro and arthritis too, if I pushed for the physio and psych support, I would be taking places from people who need them more than I do - if that makes any sense.
Any fun things on the cards for you today? x

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HeatherMJ 2d ago

@JustFi FND is something I'd not come across before. Even without your first-hand description, it sounds dreadful. It seems as though there is little real knowledge about it. I hope there's a lot of research going on somewhere.
Out for coffee with a friend today. Decided to stay local. A 30mile round trip just for a coffee seems a bit unnecessary in the current circumstances x

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Fi 2d ago

@HeatherMJ I knew about it and have had multiple people say they think that is what it was, which got to the point of being frustrating because without the GP taking it seriously and referring to neurology, I was left floundering without a diagnosis but knowing that something more was going on other than all the other things I have.

Local coffee is good, its often less stress than venturing further afield.

Its a chilly one here, but bright, so I might head down by the river for a while, get some fresh air x