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.

“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

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.