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

UkeleleEric 1d ago

@JustFi my wife has a similar condition, ataxia, that results in problems with tiredness, gait and speech problems. She can do most things, but only so much in a day. With her condition, there is no treatment (though gluten-free diet does reduce some of the symptoms), no cure, it is degenerative (though her rate of decline is not that bad at the moment), and she thus can't work. As an intelligent linguist, this frustrates her.

@UkeleleEric I can relate to the frustration, I went from being very busy, active, working and being a carer, to having days where I can barely function, some days I can do it all, most days I just muddle through as best I can.

Just Tom... 🐁1d ago

@JustFi
Have a good day yourself 🙂

@tompearce49 Thanks Tom, I'm fairly cheerful this morning so it might just be a good day 😊

HeatherMJ 1d ago

@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

@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

HeatherMJ 1d 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

@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

Phil Thane ✅1d ago

@JustFi One of our sons -in-law has FND. Started about the time their 2nd daughter was born and is triggered by sudden loud noises. Like a baby crying. Later an excited toddler screaming. 10 years on the daughter is a little quieter and the SiL hasn't had a seizure for a couple of years. Other symptoms persist though, especially fatigue. It's been hard for him and his wife and kids.

@pthane Oh no, that sounds awful for him and must have felt awful with the trigger. I have no idea what triggered mine, although since the "not a stroke" incident last year, the weakness and fatigue are a constant now. I'm lucky that my son is older and understands it, the tables have almost turned from me being his carer to him being mine. Noise can be a huge trigger for me also, yesterday was a very quiet day in the house and today I feel almost normal.
Thank you for sharing your SiL experience with FND.

Phil Thane ✅1d ago

@JustFi Having grown up with daddy always being like that the little one is good with him when he had a seizure she used to sit by him and pat or stroke him until he recovered. Nice to see though it was usually her behaviour had set him off! She is a bit boisterous and a total drama queen!

@pthane My son is really good with noticing when I'm struggling and helps more than he should need to, especially with things like supervising me cooking - I'm apt to walk away and leave the cooker on. He is also good at reminding me to rest.

Maj1 THE Neuro Spicy Squirrel 1d ago

@JustFi Morning Fi 🤗🥰

I hope the day treats you kindly & sending loads of love & gentle hugs! 😊🫶🖖

@MAJ1 Morning Squirrel, so far, it is a VERY GOOD DAY 😁

How are you doing?

Maj1 THE Neuro Spicy Squirrel 1d ago

@JustFi Evening Fi 🤗🥰

I hope the rest of the day follow a similar pattern! 😊

It’s been a busy day but we managed to squeeze a couple of movies & some birthday cake in too!

hope you have a reslful night Lovely! 😊🫶🖖

Fiona Craig 1d ago

@JustFi Epic timing! Have a lovely day!

@FionaCraig I know, its not often timing works for me 😂
How are you doing?

Fiona Craig 1d ago

@JustFi Still a bit flu-ridden. Hopefully it'll go away soon.

Having lurgy take away my spare energy has reminded me that I actually do have some 😂

Still, it's given me an opportunity to binge some shows!

@FionaCraig That cold/flu thing I had lasted a couple of weeks and it was brutal. I hope it disappears for you soon.

Fiona Craig 1d ago

@JustFi Thanks lovely, at least that's temporary, eh? 🤣

@FionaCraig Thankfully! I'm just glad I don't get proper colds often these days, that last one knocked me out.