Want my life back

[arlene9]

I've got so angry today cause I'm not working and yes I want my son to have everything I'm a single mom yes I'm starting to feel the pressure and doctor keeps saying no change in my condition .I'm just having a very bad day some of my family members thinks I'm pretending to be sick cause once a week it looks like there's nothing wrong with me then suddenly I'm I'm in bed my legs not working

[VivienneWaterworth]

I'm really sorry to hear that you have been so unwell with FND that you can't work. Which country are you in? There are so many differences in treatment and support options in different countries. None of them are perfect, but in the UK and Australia (to a lesser extent), you can usually get some financial help from various government departments, at all levels, National, County/State, and even local authorities in the UK and many charities in Aus who can provide you with wheels, (wheelchair and even a modified vehicle if you need it, though how easily you can get the vehicle varies a lot with where you live.

Are you able to work while sitting in a wheelchair or an office chair? Some people have so much brain fog (they call it cog fog, cognitive fog) that they can't function in a work environment at all, others find that the increase in stress levels from working will set them off too much, others are able to continue working, so long as they keep quietly to themselves (e.g. in an office job).

I personally can't handle using my brain in a work environment for more than 10-15 hours a week. I'm a computer programmer, working from home except when visiting clients, and my brain doesn't appreciate being forced to concentrate for more than a few hours at a time, and even then, well spaced between work periods. I have occasionally been able to force a 35 hour week, but then I crash for 2 weeks at least, and my brain just shuts down. I also get seizures, but have never had my legs completely stop working.

[englishmumof2]

I so understand. It's hard when your body won't cooperate and those around you just don't get it! I also have legs that won't work! Had fnd attack the other week and the drop in center thought it was a stroke do ended up in a and e every test clear so sent home even though left leg had glued its self to the floor..... they didn't know what to do about it so..... legs is also my problem... the other day I decided to try the gym... ha ha ha ha thank goodness I bought an auto magic car legs wouldn't work . When I got home I had to go on hands and knees out of car up drive to the house ... then slept 5 hours.... I'd love to work but exhaustion , brain fog, tremors, struggle writing along with leg problems I'm not sure anyone would employ me 😱.

[cathys20]

I too am so sorry although that is not why you posted for sympathy, for understanding, to vent, to let someone who cares know that everything seems out of control, the life you loved is gone, and no body really gets it. All of their lives go on as normal and why you, why me, why anyone on here. No answers, Dr.s have no understanding. I get it. Cause I understand. Its especially hard like you said when heres a good day then its a bad week followed by another couple good days maybe, heck why??? My left side is in such pain, works part time, and like yours goes out of nowhere, ugh, this thing won't stop. And on top of it we have many other symptoms and neurological conditions, no wonder most of us have days when we say I want to be like everyone else, normal, if there is such a thing. But.....Then I remember this, there is always someone else worse, someone I can help when well. I have a dear friend whos brain is shrinking, the sweetest girl in the world, she can barely talk, barely walk, cannot take care of herself at all, and then I think of my friend in the nursing home who had a left sided massive stroke, same age as me, no family, every day the same in the nursing home waiting for a visitor to just come and give a hug, waiting for someone to change her pants, or even more the child in Haiti eating dirt and rice, ( I have two adopted grandchildren from Haiti, Dr.s said they had the highest lead content every recorded in our state, worms in their brains, and they have the most joy, a joy that comes from within when the world outside brings such pain, and I remember, I am ok, someday I will have a brand new body, and so will my family and friends, and I remember, I;m still me, just a different me, and I keep that joy inside that the enemy cannot steal, that makes me strong. I live life to the fullest I can when I can, and when I can;t, when I am down in bed unable to get to the bathroom or move, I pray, cause it is not God who made me this way, he may have allowed it so I could understand the grief and pain and frustration of others that I might be able to bring comfort or at least an understanding ear. This is not all there is, there is more. Blessing to you today dear friend, the best is really yet to come, sending prayers to you and all. Cathy

[Lesley11 in reply to cathys20]

I totally understand where you come from Cathy. I lose the feeling in my legs every week I get 4 days where I can walk by dragging both my legs and then boom I lose the feeling for 4-5 day and I'm back in my wheelchair. The pain in shocking. I can't work because I can't go out myself. Sometimes I ask myself why me what have I done to get this because I am a happy person. I try have to stay positive because I know it could go away one day xx

[Hidden]

I understand. I have not worked since 2004. I used to be so angry about it. I have come to accept it.

My family and my husband's family do not believe I am sick. My family does not support me at all. I stopped talking to them about my illnesses because they didn't believe me and I had zero support.

I lived with my husband's parents. His mom told my husband that I wasn't really sick. This angered both of us. Matt stood up to his mom. I cried. It upset Matt so much that he had an anxiety attack at work.

I don't talk to her about my illnesses. I have not told her about my recent diagnosis of FND. I am not sure how much I am going to tell her if anything. She has asked about it. Matt just told her that I am having tests done.

It is so hard when people do not believe you. It is hard enough being sick. The lack of support only causes more stress and makes your illnesses worse. I am much more cautious about what I say. When someone tells me that my symptoms are not real or that I am just exaggerating to get attention, I stop talking to them.

I have some good friends who completely understand. Matt is very kind and supportive. Those are the people I want in my life. I can be myself around them.

As far as the other people, I will not talk about it or I will share very little. I have my guard up around them.

I am sorry that some members of your family do not believe you. I know how much it hurts.

I know you want to give your sons everything. I think all moms want to do that. But the most important thing that he needs is love and support. I am sure it is very difficult not being able to work. Finances must be very tight.

Dealing with doctors can be difficult. Hang in there. I hope you feel better soon.

Jenn

[tinslegracie]

I understand the pain and turmoil both physically and emotionally. I have jankie legs too-the like to do their own thing, especially when I am stressed from too much sensory stuff or needing to organize my thoughts, my legs are the first to go! I can't work outside of my home so I work inside of my home to have the happiest family I can. How old is your son? Maybe we can come up with a few games for you to play with your son that don't involve your legs. Don't give up!

[cgarff]

Arlene9, I am so sorry to hear about the problems you are having. I can only partially imagine what you go through. There was a time with FND when I would be walking and my legs would decide to just freeze in place, and not want to go any where. I would have to wait for what seemed like forever to get them going again, or muscles would start to tighten up so much that they would pull me to the ground. I have dealt with wheelchairs, walkers and crutches quite a bit in the last few years, but am currently at a place where I am not having as much of that happening any more thank goodness. I am not sure what the changes was, or why it started, but I am just grateful it isn't as much as it used to be.

I hope that you will be able to find some answers to what is going on. If your Doctors aren't willing to help, look for new ones. That frustrates me so much that they don't seem to want to look out of the box for you.

I agree with another comment that I can't seem to find.. just love your son, do what you can do, but pace yourself. Don't push too hard, or it could possibly make it worse. rest, learn when to restrict yourself from doing things just because you think you need to. You are important too, and you need to recover from this.

Great big hugs to you, and I hope that you can find some help and recovery.

Cheryl

[arlene9]

Thank you guys going through all the comments make me realize I'm still alive I must be greatfull for what I have and that I'm not alone I have all off you mwaaah thanks for support