Just want to give up

[timtam2014]

Im wheelchair bond just got my first hospital bed and houist whating on my custom made wheelchair cant sleep it hard as the bed im over eveyone has to help me its not fair i just whant my life back 😭😭😭😭the drs staffed my patches up so back to drs i go legens in brain but still calling fnd i just think more going on

[123lisa]

no wonder you feel crap ! Surly it cant be FND with all that going on ?? They just fob you off coz they dont really know what it is ,

However you mustn't give in to it I get that its hard and you want to give up, but if you do your letting some unknown illness rule your life ! If you can't find the strength in your self look for it in your kids, your partner, friends !! Don't let it take you, this is your body and your life fight it with everything you have afterall you would not let a stranger take your kid , don't give in and let this body snatcher take you down ! Yes we have FND but were not dead yet xxx

[cathys20]

I have been there, but trust me life can improve when you least expect it. FND is a real illness, they just don't know what is causing it. Try to focus on whatever in your life blesses you. Its hard when it seems like there is no quality of life yet, but I swear this thing tends to cycle, if you have good Dr.s ask them to try some different meds. Particularly anti-seizure meds, they may need to try several. I am holding you up this day for healing and strength to fight. This thing can really beat you up, but hold onto the hope that tomorrow will be a better day. God Bless, Cathy

[Dave_1]

Hi Timtam, certainly not the happiest point in your life for sure. Those I have met with FND VARY CONSIDERABLY. The lesions, as other posts have said are worth following up.

However the big issue, reading between the lines, is loss of control. Personally it is my biggest fear as I was always was so independent. Trying to put a positive slant on things you are getting some help and hopefully there will be room for you to adapt and learn new skills to cope with the situation. This will give you some control back. If you can get out, GET OUT, take every opportunity to make and keep social interaction going. People will undoubtedly ask the usual, what's wrong with you, how did you catch that disease etc etc. But the benefits so outweigh the risks/doubts you may have. If you can get a support worker who can help facilitate WHAT YOU WANT TO DO grab them with both hands.

What I am trying to say, I think, is this. This condition changes and quite often for the better. Give yourself the best chances by not becoming isolated, keeping as fit as you can (even wheelchair exercises) it will also make you feel you are doing something positive.

Take Care Timtam

Will be thinking of you

[timtam2014 in reply to Dave_1]

Thankyou so much ivam trying to take one step at a time but reley hard as eveytime i wheel in my room i just whant to cry seeing all the equipment from the hospital my bed hoist it makes rell thats for shoure

[Cmb3210]

Don't give up timtam..my wife has been diagnosed with fnd(conversion disorder)this past October..there have been ups n downs...she was in a wheel chair from October till February...has been hard on all of us but it gets better..w just had a solid2months of very little symptoms but this past Sunday were hit hard Again but we are keeping are heads up bc we know how things get bad then good again....remember first u must understand what fnd is and believe it n know u have it..that was our first stepto start somewhat recovering...

[Cmb3210]

..talk to yourself(no your not crazy)tell yourself im okand I've got a clean bill of health from the dr.s and i will be ok n function normal again soon...read and watch doctorsarno books and videos...he is way beyond our time n wrote books in the80s about back pain that eventually was about other pains and weird functionings of the body that really stem from the mind(TMS)not medical illness..

[Cmb3210]

.my wife couldn't lift her feet an inch off the mattress n couldn't walk either ...now she can(not that we don't have problems And it gets scary but she is getting better..please be strong and trust me...look up hollylongford on youtube n watch her videos...she has been symptom free for over 3 weeks now..god bless n we are here for u😊Chris

[Cmb3210 in reply to Cmb3210]

That was suppose to say3weeks..not years

[angelite]

Hi Timtam, your post caught my eye. I wonder if you would mind sharing some background ( symptoms, rate of progression etc ) ? I was curious as to which part of the brain the lesions are located in ? If you prefer not to answer I understand and respect your privacy. Kind regards, Angela x

[timtam2014 in reply to angelite]

Hi Angela ill have a look at my mri for you and get back to you i only just seen all theres amazing posts people saying dont give up its really nice its t2 in deep white matter but ill get my recelts out so im not gussing but i now it siad that thankyou for careing

[timtam2014]

T2 flair not shore where thay are in my brain sorry