When Functional Neurological Disorder Plays With My Emotions

A woman living with functional neurological disorder, a rare condition affecting the nervous system, reveals how her physical health has taken a toll on her mentally over the past six years.
— Read on www.yahoo.com/lifestyle/functional-neurological-disorder-plays-emotions-105242478.html

This write-up really felt like something I wrote. It’s so real and honest, I couldn’t help but share.

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Recognizing the warning signs: When the body says NO!

The past 3 days, I’ve been going back through memory lane trying my best to track back the onset of this disease(Functional Neurological Disorder). I went all the way back to 2001. That’s when I had my first fall and first bouts of chronic fatigue. The doctors always thought it was something else.

I remember while undergoing my masters in Europe, I fainted during a major presentation. No one understood what could have caused it. Throughout my internship, I kept struggling with fatigue and palpitations. Then my supervisor would send me home to rest. By the next day I would be back to normal. I kept telling myself it must just be stress. I felt I was probably overworking myself. That was 2010. By 2010, 2011, I really struggled with inexplicable fatigue. Still chalked it up to stress. Until sometime in 2012, when I fell down in the middle of a dual carriage road. With no one to help me get up. I realized I had to take this serious if not it might just cost me my life. That was the beginning of many more symptoms like severe pains, seizures etc.

What I failed to realize all that while was that, my body kept giving me signs before a fall or what I realized now to be major Functional Neurological Symptoms #FND.

By nature, I push and push myself to achieve success. I hardly accept no or impossibilities. So you can imagine my reaction whenever my body says “NO”. The usual me just keeps pushing.

I want to say I’m different now since the diagnosis but that would be untrue. I had a nasty episode last night. But the truth is, when I got up to make myself some tea, my legs gave me warning signs but I didn’t listen till I started seizing all over the floor.

I’ve realized that somehow, my brain sends an initial warning signal to my body before any major issue happens and I have to start paying really good attention to it. I can’t always please family and friends and not even the me I used to be at the detriment of my good health. I need to love myself better by listening to my body when it says “NO”. I need to learn that it’s ok to rest and keep resting for as long as it takes to get better. I’m not lazy but a warrior.

I really need to learn to STOP and Relax, when my brain and body say NO.

Functional neurological disorder: Investigating an invisible illness – University of Edinburgh’s Science Magazine

Functional neurological disorder: Investigating an invisible illness – University of Edinburgh’s Science Magazine
— Read on eusci.org.uk/2019/06/17/functional-neurological-disorder-investigating-an-invisible-illness/

I found this write up on Twitter. It’s a clearer and better insight into this difficult journey.

No one to Talk to

What I never really counted on was how lonely this journey would be.

Sometimes I’m surrounded by people but I’m all alone. I received some really good news yesterday and instead of being able to get all excited, I got the warning signs of a flare up. I had to stay still and force myself to just relax. My mum said ” I thought this news would get you out of bed and jumping”. How the I tell her that this good news wasn’t what my body needed at the time.

Most people feel Functional Neurological Symptoms are triggered by bad news, sadness etc but even excitement brought up by good news could trigger an episode. The most important thing is to really know oneself amidst all the voices out there.

Sometimes I wish I have someone to talk to. To maybe explain the pain, my hopes and dreams as well as my fears. I really wish this person wouldn’t judge me or tell me it’s all in my mind. But would listen to me and tell ” I’m here for you, no matter what”. Is that a wish we should under the category of ‘if wishes were horses, beggars would ride?”

I’m really considering making my blog the invisible friend that listens without judging. I used to talk to God a lot about what’s going, now I really don’t what to say to Him cos it’s like I’m always repeating myself.

One of the key things I was taught helps, is distraction. Well thank God for iPad games and movies.

Recently I joined a Facebook FND group which has been helpful so far. One thing I’m sure of is I’m not giving up. I’m going to keep fighting no matter what.

Functional neurological disorder: the silent illness – The SANE Blog

Functional neurological disorder – formerly called conversion disorder – is more common than multiple sclerosis yet remains a little-known condition in both the medical community and the general population.
— Read on www.sane.org/information-stories/the-sane-blog/mental-illness/functional-neurological-disorder-the-silent-illness

“You Don’t Look Sick”

It’s been almost 2 years I posted anything on WordPress. After A Different Diagnosis!!!! I tried to find myself again. Well I can’t tell you I succeeded but I’m still on it. Not given up yet.

Today, while my niece was preparing for church service, she looked at me and asked if I was coming along. Mind you, I’ve not been able to step out of the house in more than a month but my niece said ” you look ok, you don’t look like there’s anything wrong with you”. That statement cut deep. Those with invisible illness will understand why that statement hurts.

Unfortunately for me, this journey to figure out what’s wrong with me has been difficult and really painful. The doctors keep going back and forth on diagnosis. They aren’t really sure of what it is exactly and how to treat me. I’ve been struggling with intense pains of different kinds on different scales for years now. The spasms have increased in the last few months and I get exhausted so quickly that it worries me. But to those around me, I don’t look sick. As long as I’m not groaning or crying out in pain and not losing weight then how can I be sick.

I’ve learnt so well to say “I’m fine” even when I’m not, otherwise I’ll have to start explaining how I feel to people who I doubt really care to understand what I’m going through.

Most folks just want to see me better or back on my feet. Therefore any conversation that doesn’t demonstrate how I’ll be back to “normal” Me, they really aren’t that interested.

Having an invisible illness makes you a one man advocate. It’s difficult and really tiring but what’s the alternative? We need to be strong for us and those around who aren’t sick but need to hear us encouraging them. Telling them everything is going to be alright.

As always, I trust in God and shall keep holding on even when it gets difficult to turn over in bed.

#FND

A Different Diagnosis!!!!

Wow!!!! It’s been ages since I posted at all In Sickness and in Health blog. It has been a year and about three months to be more precise. Guess what everyone; my new Neurologists have come up with a new diagnosis for me.

In September 2015, I returned to my country of origin; Nigeria; where I did my best to get in touch with the best Neurologists in the country (Highly recommended and not cheap at all). They contacted my Neurologist in Ghana, run lots of tests all over again and came to the conclusion that I don’t have Stiff Persons Syndrome but rather Functional Movement Disorder.

This was a very surreal experience for me. I had gone from Multiple Sclerosis diagnosis to Stiff Persons Syndrome and Myasthenia Gravis and lets’ not forget the Lacunar Infarctions the MRI scans showed. The major question was, what do I believe now?

It has taken me about a year to come to terms with myself and I’m still coming to terms with the new diagnosis. It would be difficult to write down this ‘interesting’ journey all in one post. But I will be trying my best to put down my thoughts and prayers in to words and hopefully get some helpful comments from my readers out there.

I think I should briefly explain Functional Movement Disorder (FMD). According to the Canadian Movement Disorder Group, Functional Movement Disorder is a term to characterize real and problematic disorders of movement that, although not faked or imagined, are not due to an underlying neurological disease. These are conditions that are not infrequently seen in specialty movement disorder clinics (up to 15% of new consultations), wherein a patient comes in with a disorder of movement or abnormal movements which interfere with their function, but careful examination is able to exclude that the movement disorder is due to damage in the nervous system. Although the cause or trigger for the dysfunction is often never found, these disorders are not due to any brain pathology or lesion. These patients can present with a wide spectrum of different movement disorders that range in their severity and impact. An analogy which is useful in helping both doctors and patients understand these puzzling conditions is that they represent a software problem and that the hardware is intact. www.cmdg.org

This last one year has been emotionally difficult for me because it just feels like; the rug has been pulled out from under me. I remember My Sister asked, the Neurologist last year; “Does that mean she isn’t sick?” and the Neuro answered, “She is”. My family had and still have no idea on how to cope with the ‘new’ me. Coping with Stiff Persons Syndrome was one thing; at least they could explain it and in some ways understand it. With Functional Movement Disorder, no one really understands it. I feel completely lost.

I spoke to a dear friend, who advised I research on it and start learning to leave with it. So that’s what I’ve decided to do. It might have taken me more than a year to talk about it but I am now. I need to get better. I need to believe I can get better or at least be a better version of this “new” me. In subsequent posts I would explain what living with this illness has been all about and how I’m coping with the good and the bad and hopefully, not the ugly.

The plus side to this diagnosis is the possibility of a full recovery. I guess I could be hopeful…

“It’s Not My Fault”

“It’s not my fault” sounds like a such a simple phrase but difficult to accept and believe. A big part of me still constantly blames myself for falling ill.

I feel like I changed the rules of the game in my family, by falling ill. I realize how difficult it is for them to cope with my health challenges. Some plainly refuse to accept it as if by denying it, the illness would cease to exist. Others just take it out on me. Apparently, I’m not doing enough, I should try harder.

Trust me when I say this; I’m doing my best in this situation and in most cases I’m overdoing it. Which is what sets me backwards sometimes. I really did not wake up one morning and decide to fall ill or go to bed at night telling myself to fall ill the next morning. It just happened. This illness crept in while no one was checking and kept progressing to what it is today.

Do I feel like my body betrayed me? Yes, absolutely! Can I do anything about it?  That’s the question I need to answer.  I know I’m really trying hard but I think the challenge is I’m trying hard to be normal. To be the person I once was. Maybe I need to let go of that person and embrace the new me. I just wish I knew how.

Lord I need your strength to come to terms with today, to let go of yesterday and somehow find the grace to welcome my future by accepting the beautiful creature I am today.

The Unpredictability of My Day!

It’s really interesting how well a day could start and how downhill it could go. Today is a sample of a very unpredictable day. It’s 9pm over here and my nephew asked me “Auntie what made you so weak?” Let me just tell you about my day then.

The rain or rather the heavy winds woke me up at around 7 am considering I just went to bed at after 4am. I was strong enough to make sure all windows in the house were shut, then I went back to lie down. I finally got out of bed around 9am, feeling okay, which mostly means in some kind of pain, unbalanced movements etc but manageable. It started around noon or 1pm, I can’t really remember. The back aches, mostly my lower spine; bending was really painful, sharp pains that affected standing, walking, sitting and even lying down. Then the pain started moving towards other areas. In about an hour or two, I knew this wasn’t going to be the great day I envisaged when I woke up. The dreaded spasms followed after 4pm, by then movement was totally out of the question. My eyesight had started giving out signs of blacking out. I prayed as usually do. Asking God to take control.

I went thru my day with a fine comb, trying to figure out what went wrong. Did I take my meds too late, it couldn’t have been the heat because we had a cool weather due to the rain. I wasn’t the cause. My body just acted out without giving me a say on the matter.
How do I answer my concerned nephew?  My days, hours and even minutes could be really unpredictable but I have to live with it and make the best of the situation.

God, please give me the grace to withstand the good, bad and the ugly, while finding a purpose in everyday.

Adaptability: Life as it is VS What I Want

Its good to dream. How else do I keep hope alive? Lately, I’ve been struggling on the simple but complicated question of how to cope with what I’m going through.

Reality check: my body is still at war with me, I’ve got the same family. They love me but mostly don’t understand what I’m going through and I’ve got no medical assistance. So for the past month, I thought about escaping from this. Contemplated traveling, visiting friends etc. But really, none of this options held a solution for me. Anyone I visit would be saddled with taking care of me. I can hardly leave the house alone . how then do I travel? Ive been so uncomfortable in my skin, irritable and quiet anxious.

This last weekend I started to think like the old me. I want lots of stuff out of life, laughter, family, love, the ability to help people etc. I can’t escape the pains, the difficulty walking, the insomnia, weakness, irritability to touch. Thats as good as giving up, right?. I know it’s perfectly normal to want to run away from the pain. I’m human, it’s therefore a normal thought process.

I have decided to learn to adapt. I recognize that the road to getting what I want from life would be tough. Full of ups and downs, highs and lows, but I have to go through. My assignment to myself is to write down the difficulties and challenges I face and figure out ways to adapt while still chasing my dreams.

I’ll be writing on my journey as usual but more on how I’m learning to cope and I encourage lots of advice from everyone.