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[debs57]

Hi I am Deb.i have been suffering with fnd since 2012.diagnosed in 2014,been a long continuing journey,cope as best. I can but would like to have a more fulfilled life,what do others do.any comments welcome.

[LEEJUNFAN]

Hi Debbie!

My best advice is to take one day at a time and despite the symptoms you experience, just keep trying to do the things you enjoy even if it's on

a much reduced scale.

I know it's very difficult because I am dealing with the same issues, as we all are on this site.

Mine started in 2012 after suddenly collapsing and I get so bored and frustrated because I was finished on health grounds from my job.

You will get good days and bad days.

Having a good support network helps

if you're fortunate enough to have one.

I am going to attempt some kind of volunteering because the isolation of this condition that you feel is very hard to deal with.

You will get a lot of good feedback from

this site just as I have done and will meet some great and inspiring people.

It is, as you write, a long and continuous journey which is life changing in it's nature.

Keep smiling and hoping because that's the best we can do.

Also google other sites to get any information and tips on managing it.

Have you spoken to your GP and

other healthcare professionals who are dealing with your condition?

Please respond to me anytime

if you wish to chat.

I may not respond straight away but

I will reply to you.

Best Wishes!

Kim x

[Rachh8]

Hi there, if you can manage some level of volunteering I find it does help just gets you out and you see people and takes your mind off things for a while listening to others challenges excetera. My faith as a Christian has helped me immensely. I have to have an extremely flexible schedule as I never know until the day how I am and try to keep up your hobbies or find some that you can do. I try to read and have a subscription to Netflix as well if I'm on the difficult days or more limited days. I also do lot research and social media and support groups helps. Plus benefits take a fair bit of admin! Hope this helps xx 😀👍

[debs57 in reply to Rachh8]

Hi there,thanks for taking the time to chat,seems those of us with this condition all seem to take it day to day and do what we can when we can and not when we want...I've been coping best I can,like yourself,watch a lot of films...! Don't have a great deal of support,but,do have good friends whome I try to see when I can.hopefully I can maybe find a good group that I can join to fill some of my time. It's been nice to know we all seem to cope the same way,I feel so lazy at times and would like some improvement in certain places, just to fill that I can fit in somewhere.anyway I really wish you well and hope that not in the too distant future they find the cause of this condition.take care and keep fighting....with best wishes..debs.x

[cgarff]

Hi Deb, I myself have been going through this since 2008 when I lost my voice to a cold, which still to this day 7 years later still goes in and out without notice, then 3 years after losing my voice in trying to correct it with some medication, my movement issues kicked in. I am fortunate enough to be able to get around for the most part, but like everyone else, have hard days, but there are good days as well. I have been out on disability for over a year now, and am struggling to get help. However I just found an awesome therapist who really cares about me, and is willing to try just about anything on me to help me get through this. She has worked with others that have been given the same umbrella diagnosis, and has had success in helping them to move on. I am just praying that she can do the same for me.

Definitely keep doing things that you like to do as much as possible. They will help keep your spirits up. Get out of the house if possible, and be around people, don't hide yourself away, that will just create depression and loneliness. I know this isn't an easy road to take, and it can turn your life upside down. But DON'T GIVE UP NO MATTER WHAT! You have to keep smiling, trying, praying and doing.

My thoughts on this whole thing with me is.. Just remember it could be worse, and appreciate what you have and can do. It helps to keep me out of a bad place because it could be worse, I can still do things, and I have a good support group, family and friends that are willing to help any time I need it. I am so grateful for that.

I wish you the best in your journey, and hope and pray that you find answers to this, and that may be able to overcome the problems you are facing. If you would like to chat, I am here as well.

Cheryl :o)

[debs57 in reply to cgarff]

Hi there,sorry for the delay in replying,but you know how it is.thanks for all your suggestions.iknow in my head what I want to do and try to achieve but find it difficult to put these thoughts into reality.have always been very independent up until 2012 so find it very hard to ask for help.i do use the voluntary driver service,someone at the other end to help me if I need it,or otherwise friends pick me up and bring me home.i hope as time goes by I will gain more of the confidance that I once had.im sure you will agree that this disorder stripes you of the person you once was.the only thing we can do is carry on best we can.yes..there is always poor souls...living worse lives...I wish you well..take care..debsx

[EnglishIslander FND Hope Volunteer]

Might I suggest you join our Facebook group for more support and friendship.

Go to our website homepage fndhope.org and click on the "Join Facebook" icon. You'll be made most welcome.