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Trying to figure it out fnd & living with it

diane01diane01 Member Posts: 45 Connected
So I'm a newbie to this condition & i dont know where to turn to fnd comes in all different aspects of illness & its hard for me to come to terms with lost all interest in everything wanting to do things but i cant my brain just feels lost no happy hormones inside so i enjoy nothing everything about this condition is killing me slowly cant break the cycle & life just doesnt seem like it'l get better at any point so trapped like a caged animal nothing normal in my life now makes life in general seems pointless how can i stay strong when no hormone there to give me that one boost of hope 

Replies

  • janer1967janer1967 Member Posts: 9,210 Disability Gamechanger
    Hi 

    Do you have any support through your gp can they refer you to any specialist services 

    I'm not familiar with the condition so cant really help 

    Are there any groups on the internet that support people with this? 
  • diane01diane01 Member Posts: 45 Connected
    I'm due to see my gp tomorrow so hopefully he'l beable to direct me in the right areas of services found a few self-help groups to join so read up on it a little 
  • janer1967janer1967 Member Posts: 9,210 Disability Gamechanger
    @diane01

    Hope you get some advice from your gp 

    We are always here to support I may not know about your condition but I know what it is like trying to adjust to a disability 
  • diane01diane01 Member Posts: 45 Connected
    Aw thank you adjusting is not my strong point atm when its hard to except what you have condition wise & excepting what your going thru thats the most horrible thing trying to figure out that your life now isnt normal & u no longer can do the things you most enjoyed or having no feelings there to care sad as it seems dunno if anyone has the answers as everyone has just said take one day at a time & some days i feel so much a burden on my other half as its mentally draining on him to!..but i am really grateful for any advice at the moment xx 
  • chiariedschiarieds Community Co-Production Group Posts: 8,018 Disability Gamechanger
    Hi @diane01 - I'm sorry to read you're struggling with FND. I feel it's fairly common to be like this initially with many disorders; then comes gradual acceptance, but that doesn't mean you let the disorder define you. You try to look at things you can do, & not look back at things you used to be able to do, & now cannot.
    One of the things that does get the happy hormones (endorphins) working is exercise. So even if you can just do a little, a few times a day, you should find that helps. As well it distracts the mind, so any other interests or hobbies you have, or perhaps one you'd like to try, can all help, even if you just commit to 10-15 mins a day initially.
    Personally, I use daily exercise, a breathing exercise, mindfulness & distraction mainly; others find yoga helpful. Scope has put together some resources to help people during this pandemic, & you might find the exercise & yoga links helpful there amongst other things. Please see: https://forum.scope.org.uk/discussion/75929/coping-with-stress-low-mood-and-isolation-a-support-thread
    As far as FND itself goes, you may likely have come across this, but mentioning just in case, there are many online support groups with FND Action: https://www.fndaction.org.uk/facebook-support-groups/
    Lastly, we are all here offering support; rant when you need to, or tell us that you've been drawing for 10 mins, or building up slowly, but surely with a little exercise. I hope to talk with you again. :)
  • Adrian_ScopeAdrian_Scope Testing team Posts: 7,942

    Scope community team

    Good afternoon @diane01 and welcome to the community.
    It sounds like you're really struggling with this, but I'm glad you're seeing your GP tomorrow. I'm going to tag in @hdeakin as she might be able to speak to you about FND and relate to some of what you're saying.

    I hope your appointment with the doctor goes well and please let us know if there's anything we can do to help you at all.
    Senior Community Partner
    Scope

    Your feedback is really important to the development of the online community, so please remember to complete our online community annual survey
  • diane01diane01 Member Posts: 45 Connected
    Thanking you all for the related information & help much appreciated!..totally been a whirlwind & mind blowing i'l check out these links now that uve sent to me & hopefully have more of an understand on this condition & find ways of coping to with it..i did email fnd action few days ago but not heard anything back, i found a group on f.b who i messaged too!
    Thanks once more & plz take care now! 


  • 11190821119082 Posts: 258 Member
  • hdeakinhdeakin Member Posts: 123 Pioneering
    Hi @diane01, (thanks for tagging me @Adrian_Scope) FND is a difficult disability and adapting to a disability is very hard. The advice above is all great advice. I write a blog Hannah's Hope. I think many of the posts maybe useful to you. I have one about FND, the wolfson unit, pacing etc I will attach a few links but feel free to look around. I don't know where you are but the wolfson unit, Roehampton, London has a rehab programme for people with FND. Also have you been seen by a neurologist?

    https://hannahdeakin.blogspot.com/2019/08/what-is-fnd.html

    https://hannahdeakin.blogspot.com/2019/07/my-stay-at-wolfson-unit.html

    https://hannahdeakin.blogspot.com/2020/11/the-art-of-pacing.html

    I also recommend gentle exercise and pacing, although I appreciate it is easier said than done.

    Feel free to ask any questions I will be happy to help :)

    Best wishes x
  • diane01diane01 Member Posts: 45 Connected
    I'm in Manchester & i've not seen a neurologist drs just gathered information off my symptoms that i've got  & said its that basically ...he will refer me hopefully tomorrow as i've been like this for 2 months now suffering but i heard the waiting time to see a neurologist near me is 18 wks all bit frustrating 
  • diane01diane01 Member Posts: 45 Connected
    Seen dr didnt really understand the conversation to be honest something to do with the neurotransmitters in my brain not working like they should in balance in them on waiting list now for neurologist which is months away in mean time suffering with a nervous compulsive disorder & my brain feeling num not switched on & then there is the crying fits where my crying gets so bad that its causing more trauma to my body. It doesnt help crying neither doesnt seem to relieve any tension!..even phoning these helplines dont seem to work because like everyone else has that calming side where the brain calms there nerves down my brain neva gives up mine just keeps storing info & getting over loading i cant communicate with friends on face to face level its like i'm not even in the room horrible stuck in this mode
    Other symptom today hands going num cant find the strength to get out of bed..
    Losing a battle 
  • diane01diane01 Member Posts: 45 Connected
    @hdeakin
    Ano its small steps at a tme but i'm so tired really finding any strength in me hard to get up & go should be trying to do something but feeling so weak in myself every day my body is feeling this way or my brain is telling my body that i feel this way dont kno how to take a bit of control back
  • hdeakinhdeakin Member Posts: 123 Pioneering
    Hi @diane01 so sorry you are having such a hard time. I think first thing first be kind to yourself. Don't feel guilty of what you have not done. I know it is easier said than done. Try and do something small that is positive or you enjoy everyday. You will get there. Talking to others and making a plan helps a little. Little and often is good advice too, don't overdo it if you are having a good day. Sending a big hug and strength your way x
  • 11190821119082 Posts: 258 Member
  • Jean EveleighJean Eveleigh Member Posts: 122 Pioneering
    Whenever anyone acquires a disability in life it comes with the "death" of the life they had planed and a grieving process needs to happen so that you can start to plan for a new life based on your new abilities.  There are two articles here that may be helpful for you:-
    1 - https://www.goodtherapy.org/blog/grieving-acquired-disability/ 
    2 - https://www.talkspace.com/blog/acquiring-new-disability-affect-mental-health/ 

    Start looking here, on any websites for your specific illness/disability and on social media for groups that specialise in supporting people with disabilities and there you will start to make friends who have the same or similar experiences in life, work, education etc to you and you will start developing positive friendhi[s where you can all advise and support each other and life will start to feel easier and more hopeful again.

    At this point, you will find yourself making plans again quite organically and can then start looking at specific plans for the future.

    BUT right now you need an advocate to help you ensure you are getting all the support (financial in benefits, practical from social services) that you are entitled to; to make day to day living less stressful, there are people here in Scope who can help otherwise The Citizens Advice (https://www.citizensadvice.org.uk/) or Turn to Us (https://www.turn2us.org.uk/) or any charity websites specific to FND such as:-
    1 - https://www.fndaction.org.uk/
    2 - https://fndhope.org/
    3 - https://www.thebraincharity.org.uk/how-we-can-help/practical-help/information-advice/a-z-of-conditions/37-f/406-functional-neurological-disorder

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