Welcome to Search For Silver Linings! Sandie here, and I'm all about finding a positive perspective as I go through life, growing through adversity and the challenges life throws at me.
As a disabled wheelchair user life can be a little more difficult to navigate so join me as I share my fashion & lifestyle tips and advice for living as a disabled wheelchair user living with multiple chronic illnesses.
Along with my disability, some of the conditions I live with are Ehlers Danlos Syndrome, Functional Neurological Disorder, Endometriosis, Adenomyosis and Migraine which can be a lot to deal with but I always try to find ways to live life gently and with purpose.
I'd love if you'd join me on this journey of discovery, so if that sounds your cup of tea then hit the SUBSCRIBE button and I'll look forward to chatting with you in the comments.
- ABOUT - Sandie is a Mum of three grown children and lives with her husband and Miniature Schnauzer Lola, in the Cotswolds, UK.
Thanks so much for sharing your journey with FND? Are movement issues such as paralysis, tremors etc seen in most people with FND? Also have you looked into the Gupta brain / amygdala program? ..There are many more techniques besides what you have listed. You can re-train your brain into a new pathways and lessen and calm the stress response, F/F or freeze....which will in turn lessen the symptoms. He has studies to show his program works. He is also in the U.K.
Thank you for this informative video. I’ve had FND diagnosed for the last 2 years. I have been struggling to understand and deal with the psychology vs physiology cause of the thing. Neurologists have been lacking in their help. Computer says no so pls go look at a website and we will see you in a year! This vid has helped me see that the autonomic nervous system isn’t something we can control and the things happening to my body and brain may not show in tests as we done have the right equipment …yet. It’s not that we are imagining the symptoms we have we just don’t have the right machine to see why. ❤
My bodies won't switch off it's unbearable human torture, especially when no-one believes me and I have no one , even my social worker and support worker don't keep in regular contact, I feel like I have nothing, because I've lost everything, my partner, my walking my ability to do almost everything, I was looking forward to travelling and doing lovely things things with my partner and spending time with my daughters and Gransden, but my whole family have Abandoned me
I jus came across this, I've been blamed, shames , abused, made to feel useless, unwanted, unloved and there's nothing I can do to change it , I really have tried so very hard, I've had this awful thing over a year
I have fnd I got diagnosed 2 years ago I woke up with it.,it's horrible. Thank you for your video. This is so interesting. We learn these behaviours from our childhood from our parents. Don't do this dont touch that. It's a negative cycle. Pattern that's hard to break. Of unsolved it can lead into adult hood. But there is hope. Keep living life and distraction ,do things that makes you happy. Your so inspiring.
Thank you for your video. I have FND, was diagnosed in Sept. 2022. I'm 58 and I believe I've had it since I was a young child. You're spot on in a lot of what you're saying.
@@loveKG26 Hmm. I've read they're able to 'see' FND (or abnormal brains) with the newer Functional MRI scanners, but I can't see anything being acted on for decades personally
@@stuartburns8657 I just know of one lady who had tethered cord surgery, after being told it was just FND in Canada. She went over seas to Spain I think to have the surgery.
Thank you so very much for this video. Symptoms started 25 years ago but diagnosed 3 years ago. Been to many doctors. It’s been a rough 25 years! Thank you again!
The ableism part of self doubting yourself is so relatable and true to me. I think its because I'm so new to this disability I have. I grew up only getting and feeling sick once or twice a year. And the only time I went to the hospital was to either get a yearly physical, injury, or to visit someone else. So to go from someone who was rarely sick to someone who feels sick almost on a daily basis and multiple ER and hospital visits in a year than I ever have had in my entire life has been very overwhelming for me. I see different multiple doctors now. Most times I have multiple doctors visits in a month/ week. My life has changed so much in the last two years, I barely even recognize myself. I so desperately want to return back to the me that was rarely sick but at the same time I'm working on accepting my new reality. I now use mobility aids like my cane and my rollator walker which I'm thankful to have. Man life with a disability is challenging but I'm getting through it. Wouldn't wish it on my worst enemy though.
I've been using a cane for a few months now, but I recently purchased a rollator walker because I need to sit often while I'm out due to my chronic fatigue, pain, shortness of breath and bouts of fainting spells. I have been seriously thinking and researching electronic wheelchairs because I think I would like to have one in the near future. Just for days when my fatigue and pain is too much to physically push my rollator. It would be a great alternative to have a electric wheelchair on the super bad days. But that's just a idea for now. Great video btw.
And the more you feed the behaviours of the hysterically minded the patient the more symptoms they have! Help them understand that Functional Neurological Disorder is still considered by some to be a psychological problem. Think about Shell Shock in WW1 and the emotional struggles those soldiers went through on the battlefield. Most men were able to recover fully and got on with life but others were always affected by mental health problems and were never quite the same again. Think of FND in the same way and recovery is most definitely possible. X
I just found out that i have this a few weeks ago. My symptoms are weakness and an increased rate of fatigue in my arms and legs, a distorted sense of touch, hemifacial spasms, and numbness in the "pelvic region". I also deal with depression and anxiety, and we think that's the cause but we're not sure yet.
It's so weird, you got over it for years and then someone rings reminds you of that past condition and then you get a worser version of it in that exact same month of may when you got that call and was reminded? Is that correct?
I have joined a group of FND sufferers that i googled. I was so excited to find the group. It is comforting to know you're not alone but beware. Listening to others with FND can be very discouraging because most say the same that there just is not enough help out there.
Thank you for sharing your experiences with FND. I was diagnosed 6 months ago. It is so frustrating and discouraging. If I daid I had Parkinsons or MS people would have some understanding. Not so with FND. The first symptom was wild uncontrollable tremors in my right hand and arm. If I held down my hand to stop the tremors then my head would immediately start bobbing. In recent weeks the head bobbing and hand tremors happen together and all day. In the last week I have weakness in my legs and balance issues. When I walk I feel like I'm bouncing. I'm worried that if it keeps getting worse I might not be able to walk.
I just watched your video and it made my cry. I’m lying here as an in-patient in a hospital bed for 11 days now. Came in my ambulance after having what looked like a seizure in the street. Not my first one as I’ve increasingly had more and more since March last year following a simple viral infection. Experiencing all the symptoms you’ve described. Had all the tests possible, all coming back unremarkable. Just saw a neuro psychiatrist yesterday who told me I have FND. Hoping to get out out of here soon but need a plan of how I’m going to manage the 20+ seizures every day! So here I am finally with an explanation. Your video has made a world of difference. God bless you❤❤❤❤
I too am having seizures. With quite scary distorting auras beforehand. I do get a warning. However once I was in TKmaxx trying to reach the stool in the shoe section when I got that aura warning. Well I didn’t make it n woke up to concerned faces all around me n a bleeding face… cut my eyebrow wide open. Not fun I can’t tell u how long it took to get any kind of diagnosis It first happened 30yrs ago.. the fits last for about a week to 10 days then it seemed to disappear. Now I get it maybe once a year for a week. Sometimes I get the auras. The cognitive stuff is the worst. Fatigue….
that is me right now, my legs get so weak when I walk, I walk like a zombie, studder talking, seizures, tremors, migraine, the loud ringing in my ears. I got diagnosed with Pnes
Good info and explanations. I've read a lot of resources, support groups , websites, books.. You gave some insights I hadn't considered,. The circles/rings of safe vs red zone was a new one for me. Now I'm thinking of my symptoms as a sign to slow down..... not pushing through or completely ignore it (which is the advice I read in a book). More tools for the box, thank you!
Thank you so much, I have been diagnosed with FND for about 5 months ago. Still going through the whole health care system in Canada where it is still largely misunderstood. Your video is awesome, thank you
Thank you for this video, my mum was recently diagnosed with FND and has been given anti depressant medication and just kind of left to it.. She went from working in a school kitchen to looking like a dementia patient overnight. All her scans came back fine and she was sent home and has had very little medical support other than some mental health counselling..
Wow, Thank you for your video, I actually watched it twice just to get my head around some of the things you said. Only being diagnosed in September 2023, I find it difficult when a lot of doors appear to get slammed in my face. Maybe not appear, they do get shut quite often. Some Doctors receptionist need a lesson in humanity, as if it is not difficult enough. Apologies, a bit frustrated. I really liked the way you explained FND and triggers. Especially the circles, Safe, Learning and Danger, I am at the stage of trying to deal with this and I find the Safe zone pretty easy to be in, although it is very boring. The learning zone and the Danger Zone has a very fine line and I cross it every day. Part of my problem is that over the last 60 years, I have been told to give 100% or go home. Now I have to pace myself, use breathing exercises, distractions and anything else to get me to slow down. So frustrating. Take care and much love.
This is so true. I’ve been battling FND symptoms for over 18mths now and have had to do detective work in researching all about it as best as I can. I sustained a spinal cord injury 22yrs ago, since I’ve developed a prolapsed disc, I developed ankylosing Spondylitis, Fibromyalgia and CPTSD. The doctors I’ve seen have given me little to nothing to go on, with what I’d be facing and how to treat my many illnesses. I’ve had to do the research and educate myself of them. With my FND symptoms, I experience an aura type feeling just before I get the shakes or tremors. I’d had epilepsy, MS ruled out with scans. But still, I’m left bewildered with having to manage nearly all my symptoms myself. I do notice patterns of my blood pressure peaking, and heart palpitations and headaches just on the onset of an episode. There’s no control of these things and my whole body just shuts down. It’s debilitating to us suffers that the medical profession aren’t up to speed on Functional Neurological Disorders, and it comes at a huge cost to us. There are times I feel as though I’m suffering in silence. I’ve watched all your vlogs, and they have helped a lot. Thank you.
Also, my husband and I have been through almost everything you talked about…. We are seven years in, still seeing doctors that say is anxiety, in my head. I have FND, my husband deals with it so much better than me ❤❤
Although it is very hard to get people around you to understand that you can’t control what your body is doing. I’ve had FND seven years, started with seizures, speech issues,balance and short term memory issues. In the last several months my legs don’t always walk properly, and at times my speech is gibberish. It scares me, and I still struggle thinking I should be able to control these things. I have had many discouraging doctor visits because they don’t know enough about FND to help me.
