Trying to be Brave

[shali_queen]

Just a rant I guess. Doing my best to stay positive. I got to university and my tremoring just abruptly started. Having difficulty walking and I sat down in a chair waiting to get picked up. Trying to move forward with my life. Trying to remain like myself and trying to feel normal while sitting here waiting. I’m trying to be brave, and tell myself it could have been worse. But honestly, if I would rather cry at my situation. It’s really hard. I don’t feel comfortable in a public place. Argh.

I know what probably caused my tremoring and it is something not in control (and don’t want to share it) but point is that I can’t do anything about it. If I could I would have and I probably wouldn’t tremor. I want to be brave, but’s it’s very hard.

I just wanted to share because at these times I feel so lonely and that no one, even my friends and or anyone else can understand my situation sometimes. And I feel stuck. Whatever it is I promise to fight.

And I’m trying to fight the my emotional war and stay calm. Just want to say for all others suffering like this, please stay strong, even if it’s hard, but I know how you feel and your not alone in this. I can do this. And so can you.

[thinkin]

Hi,

I'm sorry to hear you are having such a rough day. Unfortunately FND does stop people in their tracks. Doing too much does make symptoms worse. If you have the fatigue you need to be really careful. This nightmare of a condition can also get suddenly worse. The emotional disturbance is your FND and not you as a person.

Unfortunately the pathways in your brain affecting the tremor is worse are the conscious control areas, so being more aware and distressed will make it worse. It's like when people make a stutterer more aware of their stutter - it makes them worse.

I tried being "the good patient", quite arrogantly thought I was going to do everything "right". Like everyone else was doing it all wrong - epic fail. Tried to keep going and it only made me worse - society will tell you to keep going, to fight and not let it win. New flash - this approach does not work with FND. In actual fact it's about the worst thing you can do. You have to fight smart rather than pushing your body and yes, rest is important.

After years of stubbornness I had to give in and just follow the advice on the FND Hope website. It's hard to do, just take it one step at a time. You'll have ups and downs, you just need to accept that. You have to stick to the pacing - without bargaining with it. It does not fit around social life, or schedules. I regular sleep - strict routine, mindfulness, keeping all other conditions under control and optimise everything, look into diet and nutrition, take supplements if you need to, use distraction techniques. I can't say that I'm back to normal, but I have improved rather a lot and now have some quality of life.

It can get better. Hang in there. I know the frustration well enough and people who haven't suffered saying "can't you just" or "you don't know until you try" and those "anyone can run a marathon" posts on social media, grr! If I had the strength I'd need the bail money to go with it.

I've had to edit my friends and my family - not that anyone calls around apart from one friend very occasionally who is also disabled. Just stick to the most supportive people. I'm lucky to have my husband and best friend who understand. You just need to find that safe core of people if it's only going to be one or two... or come on here for another rant.

Remember you are not alone. xx

[M3rry]

Virtual Hug. I might be new to FND but I've been there with Fibromyalgia.

I keep getting the 'why not' from people who think their cold is bad. We both know that for most people if they were to try walking a mile in our shoes - they'd never finish the first 10 yards before giving up.

I don't know if you are in the UK - but watch the malteasers ads (especially the one with the girl who has tremors) remember as bad as your life is - there is some great bits that are worth a giggle!

(I know I am making light of this, but I have found that to be the only way I can cope when I need a rant, apologies to anyone offended by this coping mechanism no insult or denigration intended.)

[SheriAUS]

Oh darl, I feel for what you’re saying. I used to work at a uni and the day that the fire alarm went off was my last straw - walk down stairs with pain, cope with loud high pitch alarm with auditory sensitivity, walk up to group of people with social anxiety...

I went to my son’s swim meet the other day. Hard seats, action around me, and limited times of being horizontal saw me breaking into tremors and disjointed robot walk as I walked to the bathroom passing my son’s coach. Unfortunately I didn’t have my headphones and all I could do to keep moving was summon the first song that came to my head. Luckily “Jolene” by Dolly Parton sung in my mind helped me get there.

Yes, there will be times to cry, times to let go, times to just find the only song in your head and move slowly forward...

[Threewhitewesties]

Hi FND affects us all differently , from reading your blog, you are already listening to your body, and even with your struggles you managed to attend your class, you are in control, your brain may have soft ware problems, but your mind will see you through, whatever the past, you are a strong minded person, I understand , and I believe FND cannot be controlled, but by listening to our bodies we can manage the symptoms and work with them, rather than fight, I have learned over the past few years sometimes the hard way not to try and beat it, honestly if this could be beaten than we wouldn’t all be here on this blog, when I read the blogs every person is surviving and finding new ways within themselves to manage their own symptoms , hats off to you all . Take care remember no one can change the past but we all have thinking minds that can help us choose what’s right for our bodies . You are you and be proud of yourself.

[DonandLisa]

Xxx big hug

[Nikismom]

You ARE brave. <3