I was diagnosed with FND a month or so ago, i have obviously been living with it for a while and just plugging along, i have been signed off work since and now i dont know wether ill be able to go back as i my job entails a memory that is sharp as a tack and mine is as sharp as a bitten down fingernail, my short term memory is very poor, i have right sided weakness, my vision isnt great and my speech is slurred and stuttering and everyone loves it when i dont know words cause then i say "thingy" or swear and call things like sellotape seaweed, scissors gloves..but its embarrassing going to shops as people think u r drunk and the way they look at you is awful..I have loads of support so thats a good thing..but they dont really understand what it feels like..so i just wanted to let you know a little bit about me and my "dodgy brain". 😂
I gave up my job last year takes a while to come to terms with it. I have great support but sometimes feel so useless ! And the drunk feeling it is embarrassing but I now let them know I have a condition !
Last night I thought I was been attacked I was panicking when my little girl took my glasses off and removed the cleaning cloth that was stuck in them ! I did feel a pillack !! But I had to laugh also forgot what faggotts were called and referred the them as Those GAY things lol ,
Were here for you and we understand every frustration and emotion you feel xx
Thanks for the lovely reply, my husband says i should have a sign round my neck saying i have a condition and not to judge, hes very protective of me at the moment and also my daughter. Hahaha it is hilarious when we forget words..do you receive benefits? I dont think ill apply as i reckon i wont get much as i am able to do most things, apart from cooking as sometimes i forget i am cooking something..so i use the microwave when my husband is offshore, i just dont want to give up working..xxxx
I worked for 3 years but kept having to cancel clients in the end my consultant told me it was time to give up !
I applied for pip at the advice of my consultant and was successful, I picked my new mobility car last wednesday and haven't been able to drive it since lol !! But my carer is insured on it so he can drive me. I also now have a mobility scooter so when I do come round a bit I can get to the shop or take the dog out ect. So I know its so difficult but you will come to terms with it you have to learn about the new you and how to cope it takes time and can be a struggle but you will get there.
Apply for pip when you go tell them about your worst days tell them what you cant do not what you can do.
You get it whatever work you oh does its for you it doesn't go on income.
Aww thanks for the advice u seem to have all the support so thats so good, its just a big thing not working as im only 38, i have an automatic car anyway, but its my pride i think, i am fed up as it is..but i will give them a phone tommorow, but ill need to put it in my phone to remind me hahaha..i dont know the amount of appointments ive missed cause o my "dodgy brain" thanks again its better asking for advise from someone who knows what you are going through. Xxx
My daughter has flown the nest so she comes and help when she can..but its a shame for her as she needs to lead her own life, yup..thats what everyone says, i have to think of my health as that comes first..but ive never been ill like this in all my days..but at least i get a laugh with my vocabulary..haha..thanks again lisa..xxx
Hi Lisa...am fine thanks for asking, what about yourself?.. ive decided to get a less stressful job..im signed off for another 6 weeks..but i think a job with little hours and less stress would be better...i phoned about the Pip of whatever..and i don't think id be entitled to much...i told them of my bad days..but i think they are reluctant to give out maximum benefits now..and silly me i said that my husband worked offshore..so then obviously im on my own..but i want to keep on working until i cant no more...but its just good and bad days at the moment..going to a physio gtm class twice a week..to strengthen my right side..but its not helping my mouth..i keep swearing..especially the F word..i get called effin Emma..i never swore before having this..i was never posh but now im defo not...hahahaha..xxxxxx
Lol emwell effin Emma im not great,atm but I will survive ! I worked for 3 years but had to give up ! Its hard coping on your own but we are women we survive !!!! Xx
Oh no that's not so good Lisa..are you ok?..survive..i think im forever trying to survive haha..xxxx
Yeah im ok plodding on like I'm drunk and stoned lol gotta get on with it !! X
Haha..my hubby said maybe being stoned will help me..am like..eh think it would make me worse hahaha..hes been brilliant though looking into alternative medication for me..what a shame Lisa..its not so fine having to struggle along. If you need a chat to let off some steam im here..take care xxxx
Hi Emma. I had episodes kind of similar to what you are describing towards the beginning of my diagnosis. I acted kinda crazy and then people thought I was drunk.
This eventually subsided. I feel like I had this episode when I couldn't deal with all the other episodes I was having at the time. I was overwhelmed, and it was hard. I hope things get better for you
Im slowly getting there..better than i was but at times i do revert back to slurring and speech difficulties, but i swear like a trooper now..i still have weakness in my right side..have been more active and doing what i am told..but it just isnt getting better..i notice that when i have my migranes it seems to be worse..but its tough because people dont actually understand what you are going through..are you symptom free now? Thanks for the reply and i feel better knowing that other people are or have went through what i am..xxx
i am not symptom free, but i haven't had anything where i seem drunk anymore. i still sometimes have issues with slurred speech during some of my episodes tho. i was symptom free for about the past 4 months, but i have recently had some more issues. it can be really hard to fight through this confusing disorder, but i hope you can stay strong and surround yourself with people who care about you. that has been the best thing for me
I have loads if support..but my work dont want me back as i am a "risk"..some days i have no symptoms..then the next week new symptoms appear..thanks for taking the time to read my issues and for giving me more knowledge about our disease/disorder..take care 😁
Hi Emma looks like you are the closest to me and this thing is tough so we need people like you who understand coz if you haven't been there they don't know
Your right..it is tough..dont get me wrong when i have my bad days, im not an easy personto be around..but they dont understand, they think going out for a walk or for a meal will help but all i want to do is curl up in a ball in my bed with the dog..i mean i am so blessed i have the support and thats really what has got me through this but its good to speak to people who are going through the same.. i hope you are looking after yourself too..😁
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