Life with fnd

Hi all, this is a question that's been in my head over and over for a long time, I have looked at different websites about FND and they say you should still try to live as normal as possible, this has caused me a lot of unwanted feelings as I have kept trying to live but it just doesn't work for me, ex. Shops cause seizure with lights, noise, unable to move as can't think to move, two people talk I can't hear either, car makes me feel so ill, was travel sick before this so I always drove, try to walk one of my dogs and just stop moving, lost even more confidence now by trying to live normally. I don't want to give up but just don't understand how I'm meant to be trying. I'm causing myself more pain, seizures, depression through keep trying. I can't lay down during day as it causes more pain so I just sit in our conservatory in the quiet, tired, lonely, and wondering what I should be trying to do to get better. Taste buds gone haywire. Coffee is no longer same like most of what I try to eat, smell gone, always cold, so many symptoms can't even remember them till I try to do something. The seizures affect my mood leaving me really down and stiff and sore so I try to avoid having them as much as I can which means doing not a lot and wondering what I should be doing to have a semblance of life, so confused 😐 Lisa-anne

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  • Hi sorry sounds like your a bit down at the moment I feel for you I kind of know how you feel as a great deal of your post could have been written by me.

    Sorry I am not really much good at this trying to say the right things to cheer you up but my head is on a go slow at the moment. Is it maybe the weather seems to be endless grey and damp at the moment. If I had a magic wand I would fly you of to somewhere warm where the food tastes good. Don,t give up the sun will shine again soon best wishes Richard

  • Thank you for trying Richard, I'm glad you can relate to what I'm trying to say, no one else could understand what I mean unless going through it too. I know family mean well and try to get you to keep trying but only so much failure then have to pluck up courage to try again, seems to take longer and longer each time, yesterday I just couldn't walk, so tired I wanted to just fall on floor, partner helped me walk but to tired to even open my eyes. Can't let him see how bad I feel as he gets upset. If only for a magic wand for us all. Thank you for replying, means a lot as not sitting here so alone now. Best wishes to you. 🍹

  • I just wish I could do more.

  • Replying is more then enough, thank you for that. 😊

  • Hi Lisa-anne

    I think possibly the problem is what you consider to be a definition of living 'a normal life'. For some that means trying to live like a 'normal' healthy person (whatever that is). For others it is just living as normal a life as they can. In other words what is normal for some isn't normal for others.

    Personally I have ME, fibromyalgia, restless leg syndrome, FND, IBS, bruxism, post nasal drip, lower spine issues, acid reflux . . . . you get the picture. Living a 'normal' life for me is something I can only dream about. That doesn't mean I don't try and do whatever I can. But I do have to be aware of the limitations that my various conditions place on me and live within those constraints. Otherwise I will simply make things worse.

    Do you think it's possible that you are expecting too much of yourself. Perhaps try and live as normal a life as YOU feel able and forget what anybody else considers normal. You know better than anybody what your body is capable of, what is going to send you into a physical, mental or emotional spin. Make sure you don't push yourself too hard.

    Would it help to spend a bit of time just doing as little as possible to get yourself back on an even keel. Use that time to think about what needs to be done in your life and what you know or feel you are capable of. Then when you are ready just try introducing various things, you decide what, back into your life. Then continue slowly building from there at a pace you can manage.

    I know that is often easier said than done, especially if you live alone, but sometimes we just need to listen to our bodies and work with what we are capable of, not what we want to be capable of.

    Take care, gentle hugs, Margaret. xxx :)

  • Thank you Margaret, I just have no idea and that's when the brain even works, if I sit and do nothing I'm not to bad, as soon as I try to do anything it doesn't work, I set myself backwards and although I know this is what I'm doing I can't stop myself, just so bored, lonely, it's my grandson birthday today, big party, outfits, 2 years of missed partys, they aren't young for long, hit me hard today. 😭

  • Yes I understand. I hope what I said made sense, but I also know it is far easier said than done. Sometimes we can be our own worst enemies.

    In some ways I'm a fine one to talk. I do sometimes find myself doing more than I should because . . . well it just needs doing and it's simple enough so I'm just going to do it. Then my husband tells me, I think you need to rest or go back to bed. I feel affronted, but deep down I know he's right.

    There are days when it gets too much for us and we miss being able to do normal things. And it's hard to know what to say to support people through them, even when we suffer them ourselves. Hopefully it helps to know you're not alone.

    I don't have children or grandchildren myself but early days in my chronic illness story I missed a few family weddings. I know that I wasn't really up to attending them but I still regret it to this day. Hopefully celebrations like that only happen once. Or as you say children are only young for such a brief period.

    Now I try and use the spoon theory. Have you heard of that one? Might be worth looking up if you haven't. Like all chronically ill people I only have so many spoons so I try and save them up for what is really needed. When you are chronically ill you have to save up your spoons for the things that really matter. And for me that is family events. It's a real pain in the proverbial but sometimes it just has to be done.

    Happy birthday to your grandson! xx

  • Thank you but all family functions are out, ear plugs can't block noise, I will try to keep a spoon for one day and just keep trying and hoping. I have 4 grandchildren, the oldest is 7 and 2 are babies, not many visits now as noises too high and seizures start then they have to leave quickly. I miss them all so much, my daughter had post natal depression and baby in hospital with sepsis. I just wanted to be with her and supporting her as all mothers want to do but it's not happening. This illness just destroys. Sorry just so much bottled up and no where to vent. Xx

  • Please don't worry about venting. That's what support groups like this are for. We may not be able to offer much help but at least we can listen and understand.

    Thinking of you.xx

  • Noise canceling earplugs by Bose has been my life savior. They are amazing. They block the clutter.

  • We have thought of these but as only got disability payments sorted in December, money is very short. Thank you for thinking of me and advice is always welcome. Xxx

  • I also use Bose, it helps quite a bit

  • Lisa-anne.

    I read so much support in the replies to your post. I also read so much support from yourself in that you are recognizing the world around you and you want to be there for others but your body just cannot go along. That drive in you to support your own progress gives me great hope for you! You deserve a lot of credit here!

    I give you great recognition and accomplishment for the effort you are putting forth. It makes you the very special person that you are. The body needs a whole lot of down time before it can begin to think about adjusting.

    For months, I could do nothing for myself not to even mention doing for others. It was a terrible time for me. Days seemed like years. I could not believe this was happening to me.

    Then, I saw very tiny improvements, one at a time. All I could think was how to hold onto those improvements. Sometimes yes. Many times no. But I learned patience like I never knew it before. Then I learned that I was only going to do what my body was going to allow me to do.

    That let me start to release the frustrations of what I could not do any longer. The modifications to life became endless to this day. But I am ever more thankful.

    It is impossible to steer anybody through this process. It is so lonely, isolating and agonizing. But, I see in you the spirit and the will to stay with it until you find that one day when it is a little bit better - and then you can try and build on that.

    You will make it Lisa-anne. We are cheering for you.

    Family sends our love.

    Dan / Seattle

  • Dear Dan, I was a carer for 17 years, I loved my job, l enjoyed helping people who couldn't help themselves, now I'm one of my clients and apart from my partner and this website im on my own. I would help anyone but can't even help myself now. The feeling of letting people down is immense and I try to hide what I feel so I don't upset them. The loss of the last2 years of my daughter and my grandchildren is overwhelming, the party's, the Xmas plays, the hugs for nanna, if I can't help myself, I still try to help others. It's all I know. Love to you and your family. πŸ€—β€οΈοΈπŸ˜Š

  • Lisa-anne.

    I just think the world of you. I do not for one minute believe you or I ever let anyone down even though we carried that burden.

    I believe you will come back from this in your own way and life will again restore meaning through family and friends.

    Hiding the burden you feel is what you do for now but one day your spirit will lift that burden and you will be free to cope.

    You are that person who helps others, always giving of yourself, in spite of how you may see it.

    You are just very, very special and I think nobody knows that more than the people who surround you with the love that they feel.

    Such an honor to meet and share time with you. Thank you for touching my life with words.

    Dan / Seattle

  • πŸ˜­πŸŽ‰β€οΈοΈπŸ’•πŸ˜ŠπŸ€—πŸ˜˜πŸ˜

  • Hi,

    I too have felt like you do at the moment,

    You feel ill, useless, tired and sad for everything you have lost, it's a bit like grieving for the old you, you look in the mirror and you don't recognise the person there.

    First try and stop hitting yourself with a stick, with thoughts of why, how, when and of course the big one- what next.........

    Give yourself real time to adjust, stop fighting it and try to relax by doing something you can do and more importantly that you enjoy. If you can't think of anything try something new. For example I used to love to do cross stitch but I can no longer hold a small needle or even a tapestry needle so I am now learning to knit and hopefully this summer to paint. The important thing though is to try and enjoy something which in turn will help you relax. It will take time and I'm not talking about days or even weeks but slowly things will improve. You will still have all of your symptoms but hopefully they will not feel as all consuming as they feel now.

    It is not a cure all or even a comfort blanket but I have honestly found it really helps me to cope.

    You've made the first important step by writing to FND the next step is to find a friend to talk to, I would love to be that friend however again that is up to you.

    You can choose somethings if not your health, but you can choose to make the best of things and yes you'll get knocked back by your health or some other problem, in my case I am at the moment fighting the DWP over my PIP allowance.

    But fight we can, we have to!

    All the best!

  • Dear borrow, I wish you luck with the pip it took me and my partner over a year of fighting them as I was awarded 2 points, in the end a charity helped to re do the forms with us, as I am in a seizure when struggling to think I am not any help at all. Another lady came to assess me and said she couldn't understand why I got 2 points. Since last December I have got full points now but it took its toll financially and emotionally. Maybe for me with Summer coming I can sit outside, even though still on my own, I feel happier outside. Health in mind helped me with those awful forms, I was referred to them by my new dr over a year ago as my old dr just sent me to psychiatrists and wouldn't acknowledge my the actual pain I was in, I would love a friendship and try to follow anyone on here, regardless of their symptoms we are all just struggling with life we now have, as you say I look in the mirror and I'm no longer there, just a stranger, bent and in pain. Thank you for your lovely letter. Lisa. 😊

  • You are very welcome! It's really nice to talk to someone who really understands not only the illness of FND but the frustration and heartache that goes with it.

  • Hi Lisa-Anne,

    I too fell into the trap set by professionals telling me to live "normally "!

    It took me a long time and the wonderful people on this site helped so much. I now realise that I need to stop forcing myself to go beyond my body's capability. Like the spoons example. If I have to do something, I save energy for a day or two, or sometimes 3 beforehand. If I over do it I rest up for a few days afterwards. Sound great, it means missing a lot of events and days out but I am feeling much better for it and able to do so much more. As others have said go with what your body lets you. I would add, try to find alternatives like phoning the birthday boy or sky ping for a short chat during the party. I started taking Magnesium and Vit D supplements and found that after a few weeks they seem to have made a difference.

    Yes. it's lonely a lot but I now take pleasure in many things I had much less time for when I was well. E.g. My family, Nature, my pets. The genuine people on this site. Oh, and chocolate- lots of chocolate!! 😊

    Take care, big, warm hugs,

    Mel xx

  • Thank you Mel, I know I push myself because I'm afraid of giving up, I feel I should be doing more, but the thought of washing up, making beds, washing, cleaning, getting dressed, takes so long just to pull myself up and out of bed knowing no one is coming to see me, what am I getting up for but can't lay any longer in bed in pain. The guilt of not helping my partner walk dogs, housework etc. I just can't leave everything to him, he comes home tired and I just don't know how to react. I end up saying nothing with all these guilty thoughts in my head that I haven't helped him. What a mess our lives have become. I don't eat much anymore nothing tastes how it used too if at all, some foods I loved make me feel sick and ill, he never knows what to cook me as don't know what reaction I'll get, loved my coffee, lovely and strong, now no taste it's even coffee. Love my beautiful dogs but more guilt as unable to walk them anymore, I used to walk each one 2 miles each day, talking to people I met everyday. Still am unaccepting in denial I suppose that I've ended up like this through pain and that if I try hard enough I will get better, I know deep somewhere I'm fooling myself but only straw left to cling too. Thank you for your lovely reply. Means a lot to me that a stranger can accept me better then my own family. Best wishes. Lisa. 😊

  • I felt just like you, 18 months ago. It's taken a long time to move forward but I am now getting there. Once I stopped fighting against it and started going with it, I have begun to learn how to take more control of it and it does get sooo much easier than it is for you right now. Also, I finally sat my partner down and explained to him just how hard this illness is to deal with and how guilty I felt about him having to do so much. I said that I would do what I can , like shopping on line and I began to pay for important clothes ironing and a bit of cleaning. It made a huge difference. I also started taking my dog out for VERY short walks but I would throw biscuits for her to run and get then make her come back to me. That way she went 3 times as far as me and it helped me get a little excercise. Gradually I have managed to Increase to up to about 1/2 mile and My dog runs back and forward all the time! If I am having a very bad spell my partner steps in. He doesn't feel left with it all to do, like he did before and he knows that I will have good spells when I can do much more, so the bad spells don't seem so hard for either of us.

    The old saying "one day at a time" had helped me through bad times.

    All my love

    Mel xx

  • Thank you for replying Mel,I have too walked 1 off my dogs off and on when able but went downhill few weeks ago and lost my confidence again, I go not far with my partner and 1 dog but struggling before we get back. I have 3 big labradoodles, mum, dad and 1 baby of theirs we kept after an accident mating before we got mum stopped, I have had comments (why do you have 3 big dogs when your like you are) I didn't have this when we have dogs and they are our babies, my partner and I didn't want any more children as we both already had 1 each so we got our doodies. I've forgot what I was saying, sorry 😐

  • Lisa , has anyone ever checked your B12? Or your adrenal glands? Nobody does until it is almost to late. You sound like me. My pituitary gland stopped working. Don't give up! Thanks for sharing! Get tested.xxoo

  • Hi have just had my B12 and something else checked after reading on here, they came back ok but am still taking B12 and magnesium. Am not sure what pituitary gland is. Was a struggle just to have them done. Dr thought they had already been done but they hadn't. Xxx

  • Oh my gosh Lisa-anne, I am so sorry you are going through so much. This disorder truly does rob us of our lives. I have gone through worse times, and am seeing some light in this tunnel of mine. I have good and bad days, and yes, you do have to listen to your body. I know we are creatures of habit, and want to do everything, but that is what kills us off. We have to take it easy, we need to take the time and just relax. I get frustrated with myself not being able to do everything I want to, and my therapist is getting mad at me for thinking that way, and trying to overdo it. Like I said, I have been fortunate enough to not be as bad lately, my worst times usually are usually between when I go to bed at night, and when I wake up in the morning. That is when I am hit the hardest. I have gone through the muscles freezing in place and not wanting to move, and still continue to have them here and there. Have the seizures.. although the conference Dan mentioned, the docs there seemed to feel that if we have a name for this thing, that will make us better. What a load of crap. I have known the name for this for years, and I am not seeing a difference because I can put a name with it. Yes it helps to be able to find sites like this and other info, but it doesn't take away the pain, the emotions, the depression, the wanting to be back in our normal bodies, the loneliness etc.. They just don't seem to get it, and that is what makes it even more frustrating.

    What helps me.. I have found that I do need to take it easy, because overdoing it doesn't help. Take the time to watch movies, read a book if you can. For me, the thing that helps me the most is to draw and paint. I can't tell you what that does for me other than it helps me to focus on something, it gives me a purpose, and I enjoy doing it. It helps to take some of the loneliness out of it. I wish I could post some of my drawings and paintings on here. I would love to share them with everyone.

    I also, and I know this won't help much, but I HAVE to keep a positive attitude, and know that it could be worse. It isn't life threatening, and I have seen changes. Some good, some bad, but there are changes. So if you can find something that you can do, maybe even keep a blog or something to keep you busy, it will help, and may help you to focus like I do. I tell ya, I get that paper and my colored pencils in front of me when I am having a horrible time, and it melts almost everything away. It truly makes a difference. But.. babysteps. You HAVE to live in moderation. you can't overdo it, if you can accomplish one thing for the day, that is something. Getting up is awesome. you can count it as one thing. If you can do another, even better. But count the things you can do, vs the things you can't. There is a therapist here that I have really liked to listen to in my area in the US, and she gave me one of the best things I could hear one day, and it fits in so many ways. So think back in the days where you could do things, you probably made a list of To Do's right? And if you didn't get everything done, you may feel frustrated, or like you didn't accomplish much. But she turned it around. It is no longer a To Do list.. it is a Ta Da list. as in.. Wow, I did this one thing today, awesome. Maybe tomorrow I might get two things done. If not, that is ok. you need to praise yourself for the simple things, not beat yourself up. Be happy if you can get out of bed and get dressed. If you are able to read a book, awesome. If you are able to sit in the tub and take a warm bath.. great! This disorder has changed your life now, and you have to work with it, not the other way around.

    My suggestions.. If you are able to get some therapy, someone to talk to at least once a week, can be SO helpful. For one, it gives you someone to talk to. And if you can find a good person that you like, it helps you to not be so lonely, and maybe they can help provide you with some coping strategies, relaxation and breathing techniques. I hate that the docs all say do therapy, but I have found it to be helpful. I have gone through about 6 people, and I love the one I am with. She is awesome, and more like family than a therapist. If you are able to do some physical therapy as well and/or occupational therapy to hopefully help to re-train your brain to remember how it is supposed to work can be very helpful.

    Sorry I am going on and on, but I hope the information I have provided will help. I would be happy to chat with you via email if you would like. It helps to have someone to chat with, who knows what you are going through. my email is cgarff1@gmail.com

    I wish you the best, and would love to be there for you if I can. I am glad you have been able to get funding too. I am still waiting.. the US takes forever to do. I currently still have around 6 to 8 months or more of waiting before I can see a judge. And who knows what will happen within that time. I am fortunate enough to be able to get out of the house, and do things, but again I have to watch it because overdoing it makes me pay.

    keep in touch

    Cheryl

  • Hi Cheryl, love your long letter, thank you, unfortunately I have seen therapists, Nuer therapists, mental health charities and they have all said the same thing (they can't help me) am unable to talk on phone for Long as once questions start I shut down and can't remember. None will come to my house because of funding so I am totally isolated, my partner is working all day sometimes weekends to try to make up money we have lost, paying for private nuerologist as dr wouldn't send on NHS, private dentist to take mt impacted wisdom tooth out before cyst erupted again nhs wouldn't touch it, they said wait till cyst errupts and then they will take tooth out. I used to love my soak in the bath in the evening but now I get out tired and angry, don't know why but I take it out on my partner. I don't bath when I'm on my own as I do sometimes drift off and he comes and checks on me. Sitting in the garden is my favourite so waiting for some nice weather. Messaging on this website has been a godsend for me at least if unable to think it's still here when I can. I love reading but unable to remembers what I've read. Sorry struggling now. Thank you 😊 Cheryl xx

  • I love the "Ta Dah" list. I am going to use that as my new strategy!

    I hope you can keep your chat on here though as it's really helpful for anyone with similar problems.

    Best wishes,

    Mel xxx

  • I UNDERSTAND WHAT YOU ARE GOING THROUGH, EXACTLY THE SAME AS YOU, BE BRAVE, GO BACK TO YOUR DOCTOR AND ASK TO REFERED TO A NEUROPHYCOLOGIST. THERE IS A LONG WAIT BUT THEY CAN HELP YOU LOADS, UNDERSTAND HOW YOU FEEL, I AM THE SAME, BUT GETTING SOME REALLY GOOD TREATMENT AND AM ON NON EPILEPTIC MEDICATION, AND MORE, PLEASE GO BACK TO YOUR DOCTOR.

  • I really felt your pain as I remember so well this battle to try to regain what I used to be. I recalled something I wrote for someone else who was facing a similar push to live a 'normal' life a few months back: I hope you don't mind the cut and paste, and that it gives a different perspective for you to ponder.

    'We are 'human beings' not 'human doings', as the saying goes...When I first got ill I would rail at the same....7 years on I remember the lightbulb moment when my boys told me what fun it was to have a duvet day with their previously ever-on-the-go career-girl mum. And the one where a friend told me how nice it was to find someone who really had time to really listen. And the sorrow I feel now for people that I see who really do feel that they just can't stop, not to wait at a pedestrian crossing for the lights, or to help someone pick up something they have dropped, or to share a good morning with a lonely person at the bus stop who may not speak to another soul all day. These days I thank God for the opportunities I have has these last 7 years to be more, and do less. And for knowing how precious each day is. Which in the end means being thankful both for my illnesses (ME and FND), and the brain aneurysm that places daily life in sharp relief each morning. It turns what others might see as 2 life- changing disasters on their head, but I prefer to dismiss the disaster tag...and revel in being in each moment of my beautifully changed life. It took me time to get here (it takes me a long time to get anywhere these days - geographical or otherwise) but I hope you find this place of rest too.'

    Blessings x

  • I do wish I too could get out and meet people, I miss being apart of society or even family life, having a job, talking to someone but it isn't happening yet for me, there is not much but loneliness, my partner off today so that is nice but as for remembering previous days the memories are not there. Thank you for replying, it's nice that you have taken time to reply, one day for me I will have what you have and appreciate the time I have to do something without paying for it in pain. Best wishes Lisa. Xx

  • Hi lisa

    When first ill I was bedbound... many with severe ME continue to be unable to cope even with light and quiet conversation, fortunately for me that stage of the illness was shortlived. I was buoyed up through that stage by the opportunity to think and pray, to think of others and what they were going through and be their listener. There was not much going out and doing, but that didn't mean that I had to stop being. Even in days of relapse now I try to find something of meaning - a migraine that confines me to bed for 48 hours is a chance to reflect, in between being out of it. A period without my legs is a chance to speak for those with illness and disability - whether directly or in places such as this. There is always a place for us....

    Blessings

  • My dear! I am absolutely thrilled to hear how depressed you are! That's delightful news!

    Some years ago, 10 years in fact, I was poked into going to talk therapy yet again for depression – and the counselor I was seeing urged me to go to the bookstore and find some silly self help book he was promoting at the time. It was a very, very silly book. Horribly simplistic and waaaay too chipper, not the least helpful. Quite offensive, frankly. But as I wandered about the bookstore, poking and prodding, I discovered a very different book. This one on how the brain develops. Pop science, yes, but still considerably more interesting to read than that idiot book the idiot therapist was pushing at me.

    Lots of info in it, but the biggest, best and most helpful bit in it for me was the section on the Terrible Twos. Hehehe. As a mother and grandmother you would know all about the Terrible Twos but you MIGHT not know the most interesting bit that applies to you and me!

    It seems that right around two is when the brain discovers the concept of causality. Until then everything just happens to Baby. Baby doesn't understand how or why his bottom is wet or his tummy is hungry. And then one day Baby figures out that grabbing Cat's tail causes Cat to make a wonderful loud noise and that Baby made that happen. He did it all by himself! One thing leads to another and very soon Baby is tearing around PROUDLY CAUSING no end of delightful destruction and lots and lots of NOISE! Huzzah!

    You see, we are hard wired since our Terrible Twos to change the world and when, for whatever reason, we are prevented from taking command of the world around us and CHANGING it to suit ourselves...WE GET DEPRESSED. It's perfectly natural and shows that our brain is actually working correctly. We are here to change the world and it's all wrong when we can't.

    Think about that!

    As our world gets smaller and more limited in scope we'd actually be crazy to be cheerful about that. Right?

    This realization gave me considerable peace of mind. I wasn't wrong to be depressed. It was the HEALTHY response of a HEALTHY mind to an unhealthy situation.

    Find a way - as many as you can in fact - to put some Terrible Two RAMPAGING back in your life. Grab Cat by the tail and yank hard! Joyfully fling some feces at the world! And have a tantrum every now and then Just for th wonderful NOISE! It'll do wonders for you.

    I speak from experience. :)

  • Lisa anne I wish you lived just down the street from me I'd fly down on my mobility scooter and give you a big hug or even a wee wave through the window if you didn't want to be disturbed . I have been where you are there was a time I hardly saw anyone just sat in my chair everyday. I don't know if it was the amount of pills I was on or it was disassioation but I was out of it most of the time. I still crave peace and quiet and that in turn makes me feel lonely, it took me 6 years to accept help from the social worker department and I'm now attending a day centre, Just want to say hi and send hugs. x

  • Thank you tobie, that is such a lovely thought, I too wish you could, I would love to meet or even just see you. I'm just glad your getting out finding the world again even if just small ways, sorry didn't answer yesterday, was not a good day, my partner Trevor is going to take me to my parents this afternoon, I'm so looking forward to it even though I become unwell, I just want to see them, plus mum day Sunday, I won't be going as if brothers al there I can't cope with the noise and talking, it's not right for them to not speak or for me to sit in a quiet bedroom, it dosent help my upset. So going this afternoon, can't wait. Love to you. Xxxxxxx

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