Isolation due to FND

[HenriettaPoultryfoot]

Hello Fellow FND Warriors.

I developed symptoms in Summer 2020 and diagnosed in May 2021 with FND. As with many of you, the symptoms have eroded your life so that now it a shadow of your former self.

My query is relative to isolation and coping.

By nature, I am an extrovert who enjoys people, activities, and adventures. I enjoyed my job! Since my symptoms began 4 yrs ago, my life has become very small. Although I live in an area with many opportunies to engage in work, fun, and leisure, I may as well live in a remote area.

I had to give up working, people who I thought were my friends faded away, and my little family was less than supportive or helpful. Basically I was emotionally, and somewhat physically, abandoned.

Finally, my husband has turned around and become supportive. My only living child (34 yrs old and lives 10 min away) has stepped away. We were so close. Then FND changed all that.

As a result, I have become emotionally unavailable. I have lost the ability to feel love…toward anyone. I feel nothing. Scary. It is too risky. I cannot handle any more hurt and rejection. I no longer trust that anyone will take care of me if I become even more needy. Ironic, because I had been the one who helped and supported others in their times of need.

I see a psychologist who helps me deal with my life within the confines of my FND symptoms. I have a psychiatrist too. Thank God for telemedicine! I have developed my own activities as best I can. I have become a more adventurous cook, I listen to a huge variety of audiobooks (vision cannot support much reading), garden some, and try to learn new things. All of these activities are flexible. I can do them on good days/weeks. It is a crapshoot what I can do on any particular day.

I am out of ideas.

Do any of you who have been or are in a similar situation, have tips or ideas that may help me? I feel so isolated. Actually, a bit abandoned.

Sorry for this long post. It was not my intention but ended up being long winded. Thank you.

HenriettaPoultryfoot

[LEEJUNFAN]

Hi there,

So sorry to hear of the isolation.

My Wife previously worked in a Hospital

around many people and had to finish on health grounds after being diagnosed with FND in 2011, aged 34.

Like you, she loved being around people and having a regular routine, but FND took that away and her symptoms are unpredictable.

You come across with a positive attitude, which is the best way to be and adapting

the best you can.

I only work part-time now, whilst helping her the best I can, but the isolation she feels, being stuck in 4 walls is mind numbing.

To quote her words, " the quietness is that bad, you can hear it"

I wish there was an easy answer to the isolation feelings, but there isn't.

She doesn't have a supporting family and friends are far and few.

If you are fortunate to have that, then it's

a true blessing to feel helped and not alone.

You are doing the best you can, just like all fellow FND diagnosed individuals.

Just hoping that one day, there will be help centres, as currently, they are far and few.

Sending you warmest wishes and hope

you have a good day.

Tony

🙏🙏👍

[HenriettaPoultryfoot in reply to LEEJUNFAN]

Thank you for your kind words and encouragement. They mean a lot.

[LEEJUNFAN in reply to HenriettaPoultryfoot]

You're very welcome,My heart truly goes out to anyone dealing with FND and it's symptoms.

My Wife can truly relate with you all.

Hope things improve for you.

Warmest wishes!

Tony 👍 🙏

[Lady4]

That post brought tears to my eyes and makes me so angry that not enough is being done to support people with FND and similar MUS. Its the symptoms that need addressing with rehabilitation programmes/techniques giving back the lost confidence with proven positive results before people become additionally stressed and isolated.

[HenriettaPoultryfoot in reply to Lady4]

Lady4.

I completely agree with you.

[Lady4 in reply to HenriettaPoultryfoot]

Forgot to add Hugs xx

[Calistar]

Your post makes me so sad! Who are these people to walk away from you just because you are living with an illness?! FND doesn’t define you nor does it change the person that you are inside. Shame on them!!

Do something everyday that brings you joy. And know that you have a community and support here.

[HenriettaPoultryfoot in reply to Calistar]

hi Calistar

I too was astonished and a bit devastated to actually realize that a medical disorder drove people away. By nature, I am a people person. I was the go-to person, the organizer, the planner, and facilitator in my family, at work, and socially. I was happy to do whatever I could for others. Service to others brought me joy. Now that I cannot do all that anymore, I feel extraneous, ignored, and tossed away.

Are others angry with me because my historic way of operating cannot happen anymore? Perhaps unwittingly, I surrounded myself with wolves in sheep’s clothing.

Your suggestions are goodies!!! Thank you!

Henrietta PoultryFoot

[Calistar in reply to HenriettaPoultryfoot]

People are afraid of the unknown. Stay true to yourself

[Sparklingsunshine in reply to HenriettaPoultryfoot]

I wonder if they would have abandoned you if it was cancer, MS or a " visible" illness. Playing Devil's Advocate I sometimes think its other people's inability to cope with their own mortality, ageing, or you are a reminder that illness, disability and misfortune can strike anyone. Its completely random and that scares people who nuture the belief they are in control of their lives.

People prefer to think this stuff happens to other folk, not family or friends. Humans by and large are very bad at dealing the messy side of life. We prefer the Instagrammed airbrushed one.

That said though I take a very dim view of people who do this. It shows a lack of compassion, thoughfulness and empathy. If you care about someone it doesnt stop when they become ill. It says far more about them than it does about you. I'm truly sorry.

[Lady4 in reply to Sparklingsunshine]

I agree even friends of mine "stopped listening because they don't understand" or "changed the subject" its heartbreaking but I pulled one friend up on it and I have told ither friends that their comments/suggestions are upsetting me, I shouldn't have to justify my actions to anyone but myself.

Do they need to understand, judge and make unhelpful suggestions, no, they need to be there, no matter what. I try and take note of their situations and listen although its hard not to make suggestions/comments to those you love, so I guess we are all learning and guilty of that. Sometimes its easy to help others, I guess it can be a welcomed distraction, other times it adds to the stress levels.

I have had friends mentioning you sure he is not having you on not to go school and it kinda messes with your head and increases the anxiety.

What they need to be saying is "what can I do to help", "what do you need from me"* even if they have no clue and lets face it many of us had never heard of the diagnosis and being ignored/disbelieved or sent to some website the educate yourself is just not right.

* I am sure those are questions similar to ones medical professionals should be asking.

We hear you and we fight by your side.

[HenriettaPoultryfoot in reply to Sparklingsunshine]

Sparklingsunshine,

Thank you for your heart-felt reply. I agree, the actions of others does speak of them poorly. I am working on accepting. I cannot understand. I try to weed out the negativity. I am working on discovering from whom any toxicity is coming.

But this is tough, but necessary. Life is not a bowl of cherries, where they are fine and the bad stuff happens to others.

Be good to yourself, Sparklingsunshine. Your name here is a positive. I like it!

Henrietta PoultryFoot

[Lady4 in reply to HenriettaPoultryfoot]

True friends should stick around no matter what. It sounds like you ran yourself ragged after others and wasn't truly appreciated.

[HenriettaPoultryfoot in reply to Lady4]

I do have a couple true friends. Sadly, one lives in the hills of NC and the other is a traveling nurse. She changes locations about every three months. Those two ladies would bend over backwards for me and come running if local they do keep in touch.

I did have a short visit (about 3-4 hrs) with each within the last six months. It was heartwarming and sad at the same time. I miss them terribly. Doubt I will see either of them for a few years.

Yes, I found out the hard way that people who I truly thought were friends, were not! Some I worked with for 10-15 yrs; some I knew for 30 yrs. How could I have been so blind?!?! None have asked how I am doing or what they can do for me. They have faded away. Rarely do I even check in on them anymore what’s the point. They never check on me.

It is hard to think I could be so wrong about people! I guess we are all learning.

Take care of yourself. Look for a smidgeon of joy in simple things. Be good to yourself. 💙💜💚❤️💛 I am sending you five hearts to demonstrate the courage we FND warriors have.

Henrietta Poultryfoot

[Lady4 in reply to HenriettaPoultryfoot]

Thanks for the 5 hearts, I am only a member here.

Can"t you do Face Time regularly with your friends, I know its not the same but its contact.

[Cornelia35]

I am so sorry i completely understand ,am going through the same its been 3 years. I dont have any family brothers husband childen. Only my mum who is 77 and has dementia ,i live in Cyprus nobody understands fnd. I was the go to person as well ,now that i need help ,most of my friends turned their backs on me. I don’t think nobody cares that i have it.

But you know if there was a cure i would take it this instant and I wouldn’t care about anyone who abandoned me!

But there isn’t any cure every day i wonder why they can’t help all of us and we just left alone to suffer.. it is so unethical the least i can say. I can’t even walk my dog or drive by myself… and i was the joy of life!

[HenriettaPoultryfoot in reply to Cornelia35]

Hello Cornelia35.

I hear you. I am acknowledging your aloneness. Being rejected and abandoned is tough. Very heart-wrenching.

A true friend, who is a traveling nurse, worked with me to compose a list of Simple Pleasures the Bring Me Joy. At first I couldn’t think of anything. I thought my moments of joy had to involve other people. Then I discovered that joy doesn’t come from others. It comes from within. I found a few things. For me, having a cup of tea in my favorite mug or a fancy teacup and saucer brings me joy. Listening to an audiobook of a favorite novel while resting, is wonderful. And so on.

I am trying to be good to myself. I am trying to let go of negative or absent people. I am trying to fill that void with positivity. Sometimes I flounder at finding any good stuff. At this point, I haven’t been able to forgive others. It is hard. I struggle with it.

I am keeping on, keeping on. Just like you, my fellow FND warrior.

Henrietta PoultryFoot

[MONIREN]

Hi, I'm from regional Australia, I started my journey with FND in 2017. Mine seems slowly progressive. Yes, I've never allowed anyone to define me with the disorder. Most close to me choose not to talk about it, especially when I start jerking or my speech slows down or I walk weirdly. When I do go shopping, the kind assistants allow me to point as I struggle with words. Wait patiently as I struggle to pay. I try to be happy and joke around, make their day pleasant. This is me , take it or leave it. I have a supportive husband, I'm actually his carer, as he is quite unwell. We accept help when offered but cope the best we can by ourselves. Fortunately we are with Aged care program, so they fill the many gaps. Ask around whether something like that is available. Those people on the whole, deal with people with disabilities and treat you kindly. It takes time to be accepted in programs but worth it. I'm sorry you don't feel the love of your past friends and family, but you are worthy! Don't accept half hearted care.

The only program I was offered I couldn't get because of location and my sick husband. I hope what you have been offered helps.

Take care. Moni

[HenriettaPoultryfoot in reply to MONIREN]

Thank you for the information and tips. I will keep trying. I aim to learn more and more about FND and about any care assistance available. I try to be my own advocate but sometimes I am too tired.

Wishing you a day filled with some joy, hope, and a feeling of connection with this group.

Henrietta PoultryFoot

[MONIREN]

This is just the way I handle FND, I try to sort out symptoms not the cause. Even those who say they know about the disorder actually don't. I've seen 3 neurologists, last one just smirked when I said I couldn't control my jerking. She said for me to go off Parkinsons medication that was helping, my gp allowed me to decide when and if I went off it. Both Parkinsons and FND are very similar, both counted as a software problem. There are great videos on YouTube. Maybe go down that avenue. Just a suggestion. One day at a time. Don't push yourself, only you know how much strength you have. But don't stop trying. A $50 note is still the same value even if its crumpled. Take care.

[HenriettaPoultryfoot in reply to MONIREN]

Thank you, MONIREN, for your insight. I like that statement about the crumpled note having equal value to the smooth, crisp one. I will borrow that, if I may.

Yes, the medical community at large has little understanding of FND. There is an international organization that studies FND. It is called The Functional Neurological Disorder Society (FNDS). This professional group is comprised of neurologists, psychologists, researchers, and professors who focus on FND as a unique and real disorder. Yes, a true disorder in and of itself. All of the written material is in doctor-speak and very clinical wording. FNDS has a huge convention every year. This past summer’s location was in Verona, Italy. I forget where the next one will be held but in two years, the convention will be held in Baltimore, MD, USA. I found out about FNDS through my neurologist. It may be worth researching and asking doctors about it.

Additionally, the global center of FND studies (as appears to me) comes out of Edinburgh, Scotland. Jon Stone hails from there and is considered a predominant founder and researcher of FND. You may want to Google that name.

To wrap up, i self-advocate. I do a lot of research on my own. I look at information from very reliable sources. In the USA, where I live, I trust information from the Mayo Clinic (NY), Mass General (Massachusetts), and Johns Hopkins (Maryland). I have simply called these places and eventually was transferred around until I got to the right department. I asked for any information these institutions could give me. I received some good nuggets that way.

The best things are that all of this can be done at my own pace I work around the bad spells. I have no deadline to meet. Also, knowing that I am being proactive in my care gives me a sense of power. I will not bow down to doctors that are either arrogant or dismissive.

I wish you well., MONIREN.

Henrietta PoultryFoot

[HenriettaPoultryfoot in reply to HenriettaPoultryfoot]

I made a mistake. The Mayo Clinic that I referred to in my original post is in Minnesota, not NY. Opps. Sorry.

[ragerty3]

Ðear HenrìettaPoultryfootEveryone that has read you post has had some lovely replys i have loved reading all of them

Your poßt made me cry when i read it because if i was going to write a post i would mirror your words and feelings just wanted to let you know youtr not àlone

[HenriettaPoultryfoot in reply to ragerty3]

Thank you for your kind words, ragerty3. However I am saddened that you are in the same situation. As you said, we are not alone.

Over the past couple years, I have been working on stopping the comparison of pre-FND me and current me. I have developed a mantra that I recite to myself. It is, “I am doing my best, and my best is good enough.”

[ChaosCats]

Hi, an introvert here that is also struggling with the isolation aspect! If you are able to, I suggest looking at a local ymca or a similar program for some kind of exercise class. It gets me out of the house and moving. Plus the endorphins are good and you will be seeing people so that could give you an opportunity to connect to others at least a little. Libraries are also good places to find community. If you like books maybe you can see if there is an audiobook version of whatever the book club is reading? I think some libraries also have crafting activities and groups as well! I wish you luck!

[HenriettaPoultryfoot in reply to ChaosCats]

ChaosCats,

Thank you for your reply it sounds like you have developed a good list of anti-isolation activities. That is wonderful

I have joined my local senior center. It is only 1.5 miles away! I try to eat lunch there on a couple Thursdays per month. There is an exercise room in the center. My neurologist recommends I try the recumbant bike because I am less likely to fall off that than other stationary bikes. Yes, my balance stinks. He said floor exercises to work on my core would be helpful too.

whenever my vision lets me drive, I try to go. I will explore your other ideas

Thank you, ChaosCats.

HenriettaPoultryFoot

[Panther5000]

Any diagnoses where you are uncertain when you will feel well enough to go out with friends chases a lot of them away. I have a daughter who was sick and we became very isolated because of it. She was young so it was a bit more understandable since kids have to have help from someone to help them through some of the awkwardness that comes with dealing with a sick friend. We could never commit to doing things on any day or time since she never knew if she would be up for it or not. It is hard to connect with someone who cancels or is not available most the time. Her church friends were the most understanding but after a few years passed with her not going and them visiting but her not up for it they did eventually stop coming over. Some might even have take the cancelations and unavailability personally. Now we do have a few more options to reach out to those who may not be up for a personal visit. I know a lot of people who are home bound who play a game called Big Farm it helped them feel somewhat connected since there was a comment or chat feature.