As you's know I went out yesterday to order my sign about feeling proud I wished now that I had put a bit more in it, can anyone come up with any sayings that will remind me that I can cope with FND so that I can get another sign made.Any help would be appreciated,I know it's maybe to much to ask especially when most of the time our concentration is poor.Is anyone up for helping it could possibly help you aswell, it doesn't have to be a saying it could be anything that will encourage me to battle on.Thanks
Looking for help: As you's know I went... - Functional Neurol...
Looking for help
23 Replies
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Hi ~
I embrace the challenge, and I will keep going.
• in reply to
Thanks for taking the time to reply.
My head is bloody but unbowed
• in reply toJHutton1994
I'm not to sure what this means sorry, but thanks for taking the time to reply.
• in reply toJHutton1994
I get it now took a bit of time for my brain to take it in
Every endeavour counts, however small
• in reply toSpanner46
Thanks for taking the time to reply.
You are braver than you believe , stronger than you seem and smarter than you think.
This may not be what you are looking for, but it's my go to.
It's a famous Winnie the Pooh Quote!
I am so pleased you are feeling proud. Such a lovely positive place to be in. Be proud of each little accomplishment. Each little thing that means nothing to the outside world is massive to people with fnd. It's so hard not to get down with fnd, so I love you are getting a sign as a reminder ❤️
It's taken a few years but I do now do a 2 hr cleaning job 5 days a week and although I have to rest straight after and really look after myself, I can generally cope most of the time. There are flare ups. I have just gone from September till yesterday not crossing a road without anyone with me, and yesterday went to town for the first time by myself. At work, I know if my eyes clamp shut I can feel my way around the pub to find my boilling water to re open them. It's a massive improvement fron a year and a half were I literally had to have a carer with me at all times and didn't think I'd ever be able to work again.
There is hope and things can get alot better. It's hard, but try to remain positive and optimistic. I try and fit lots of thi gs I enjoy in. Especially as I can still dance. And if I have my eyes clamp shut whilst dancing, people are aware and will help me. I also am in a drum band and have private drum lessons all since fnd as part of my recovery. Find something that you enjoy and that takes you away from the sadness of fnd and where you can release the tension and be you.
Keep the positivity up and surround yourself with love and kindness. Enjoy today's sunshine
• in reply toMaisieH
Thanks for your reply it did have an affect on me.That's good you can still dance and get out to work for a few hours,if I tried to dance 💃 my legs would probably end up around my neck of something lol my arms and legs fly all over the place and I fall about as if i'm drunk,I remember trying to dance when I first got FND it was hilarious it just wasn't happening.I hope you continue to enjoy some things in life for a long time to come.Do you mind me asking what makes your eyes clamp shut.Take care and well done you.🎵🎶🎖✨
MaisieH• in reply to
Of course. That is my fnd. How fnd presents I'm some people as non epileptic seizures for example, for me it presents as blepharospasm/ appraxia of eye opening only after mis diagnosis of the above two, I was diagnosed by the top eye doctor in London (day case from near sheffield) as it being fnd (Moorfields eye hospital London. They then sent me a referral to thr fnd centre in London to confirm it . So the fnd makes my eyelids clapt locked shut. Until we were advised to try either a boilling kettle hot water on a towel to relax the muscles around the eyelids, my eyes would clamp shut within about an hour of waking up till I woke up again the following morning so was functionally blind for all but an hour or two max each day in the very beginning. I now carry boilling water in a falsk always never letting it leave my side with a tea towel. I learnt to shower, pick out clothes, make a cuppa etc all with eyes closed. Now it happens every few days but within a few mins I can open them with the boilling water. They may shut straight away again several times over, or may just be once or twice. I have just had a 3 week period with no episodes so it's a big relief for a good period. It's looming though I can feel it, so any time now it's ready to happen again.
Like everyone, we learn how much we can do before needing to stop for a rest etc. I just try to be on the positive side always. There are so many people out there in the world worse off than me.
For me , my first episode came on out of nowhere where the week before my 40th birthday. I am 44 today so 4 years and 1 week in!
I was a self employed childminder so it obviously lost me my business overnight with no paid time off. I obviously can't care for children I can't see! Obviously can no longer drive either.
It was a lot of pressure as it meant my husband and children had to go into carer roles. Boys were 14 and 12 but good boys so really took care of me. They walk me where ever I need taking now. Husband obviously then had to taken on all the shared duties by himself and we lost all my income over night
We thanked our lucky stars though. Although only 40, we had paid both mortgages on our 2 houses off already so we were in a fortunate position with no debts. My income was spare as we had always been very careful in case anything ever happened. How we knew something may happen, I just don't know. I know this could have crippled so many people who relied on both incomes . It's a cruel cruel cruel think fnd. What I really hate is that people think it's psychological and you can just make it come and go away. If only! Who would ever want this!
Stay strong, love your self, be kind to yourself friends and always have hope that it may one day get better ❤️
• in reply toMaisieH
First of all HAPPY BIRTHDAY 🎂🎁that's a nightmare with your eyes I could definitely not cope with that.I don't believe that FND is psychological,I also can't bring myself to believe childhood trauma can cause it,they say this,that, and the next things can cause FND,and see all this rubbish that you can retrain your brain it that was the case then why is there still so many people suffering,i've had it for 9years i'm 60 and I've given up hope of getting better I would love nothing more than to find out that they have found a cure so that everyone on this website could be happy again and enjoy there life.I'm going to use your phrase as headline and have the others scatter around it,thanks for your help my eyes are closing here.Take care🤗
MaisieH• in reply to
Thank you I will keep my fingers crossed and keep hoping for all of us suffers too that one day everyone finds there way out of this.
9 years is a long time to be having this. Keep strong.
I have no childhood trauma. What i do believe may have triggered though .......A year before my eyes started, I lost my nan. I was working full time 40 hrs week had teenage sons at home so all the household jobs and running around after children. Finish work, 50 mins drive to the hospital each day, see nan then home again through her cancer. From the time she stopped treatment and it came back aggressive, I did this every day until she passed, only missing 2 days. I had to spend as much time with her as I could. The only person I ever truly thought understood me. I am /was so similar to her. I spent 3 nights in hospital sleeping on her room during the last days and with the other family members also. On the last moments, all other family had left the room and nan chose to go when only surrounded by her 3 granddaughters . This moment I live over and over and cannot get the thoughts out of my head. When my eyes started initially, I was still crying everyday from my nan and I do honestly believe it is ptsd from those final days and trying to live without her in my life. 5 years down the line and I can still burst out in tears in random times, and just be doing my 2 hr cleaning job when I am reliving her passing again and consumed with the emotion. I honestly do believe this could be one of the main triggers.
Generally speaking though, there was no stress in my life at the time of onset and it didn't make sense. Why if it was going to happen, did it not happen when I was at the worst point to in stress in my life?
No, i also dobt believe it is psychological in any way. We need alot more research into this. Just wishing everyone positive thoughts in their journey through this. Keep strong !
It could be that whole experience was so emotional that you blocked it out for a while (put it to the backnof your mind) and maybe a year later, it truly came back full force, only a thought. I think therapy (not necessary trauma therapy) may help.
The reason I suggest this may be helpful is that I was speaking to another member who experienced medical trauma and the sounds from the environment years ago, seem to trigger a reaction now. So wonder, if there is a reason that you could explore that may be creating this reaction.
I hope it will get better too and hope your period of remission continues. I haven't learn anything get or heard of any members with that symptom, but as soon as I do I will be sure to report back.
As the warm water serms to relax the eye muscles would a relaxing facial help at all.
Good is goooood and bad is disappointing
I went to a great rare conditions meeting in the UK several years ago and met a young woman with Frederick's Ataxia who had a saying which was 'I have FA but it does not have me'. I promptly nicked it for MdDS and made it into a t-shirt to wear at future rare conditions meetings. Maybe your sign could say 'I have FND but it does not have me'.
Thanks for your reply i'm very grateful,i'm excited about this now I can't wait to get this done.
Yes it's getting professionally made I've ordered the first one but I need to go through all the ideas that people on the website gave me so that I can get a second one made,i'm going to see if I can get pictures of my wee grandson on it because he is the reason I need to live,I need to be here for him when he comes out of care.It is bloody hard I've got a constant battle going on in my head at times it's goes back and forth from just take an overdose to seeing my wee grandsons face,it's brain damage. I JUST HOPE IT HELPS ME, THAT'S GOOD WHAT ?YOUR DOING TO HELP YOURSELF TAKE CARE.
Thankyou
I got this, I always have and always will
Or maybe
This too will change.
Because everything changes we are never stuck in the same moment for ever, everything passes and changes. One min you’re having a seziours - the next you’re not- it changes and you can keep going until it does because you know it will. You can get through it knowing that it will change.
Hope they help.
I think thats a great idea, you could also use a multi photo display frame.
