It’s been a year now since I got diagnosed.
I’ve been unwell for a lot longer but a year ago to the day I got admitted to hospital to the neurological unit.
They diagnosed me with this thing called Functional Neurological Disorder that I had no clue what it was. I had never heard of it. All I knew was that it was here to stay, they had no idea how much better I could get and there was no tablets to take.
A year later I can honestly say it’s been a tough journey. There’s a lot I have learnt and there’s a lot I still have to learn. I thought having an answer would bring relief but honestly it’s brought more questions and complications.
It’s been a hell of a ride and I thought I would share it with you.
I had no idea a year ago what FND was. All I knew was this recovery was going to be bloody tough and unknown.
I refuse to accept the fact that I will forever have to pace myself and watch what I do. Keep stress to a minimum. Do exercises. No. I refuse. Why? I mean why do I have to work so bloody hard just to be about 70/80% battery life of what I was? It’s not fair! Nope. I refuse to believe it and this will go away.
Part of me has accepted what’s happened however there will always be a part of me that will refuse to accept that I’m now disabled at 34 and every day life is a struggle for me. I refuse to accept help because I am so young. A few years ago I was helping others. It’s hard to accept that some days I have to ask my husband to help me dress myself, feed myself and help me walk to the bathroom.
I am so bloody angry this happened to me. It’s robbed me of so much. I’m so god damn angry. Why? Why me.
I try not to get as angry these days but it’s so frustrating. I just want to be able to do everything I know I should be able to do at 34.
I honestly can’t tell you how frustrating it is to look at your feet and think just walk! Or see your hands and think why can’t I lift that cup. Or lie on the couch unable to move speak or eat and think why the hell cant I just get up. It’s highly frustrating. One moment you can do it and the next you can’t.
With a chronic illness comes great sadness. To be physically so dibilitating on pretty much an every day basis is beyond sad. It’s not something I asked for. I didn’t want to be like this. So much has been taken for me because of this illness. It’s not just sad for me though, it’s sad for my family too.
This is a big one. I have lost so so much. I have lost my career. Everything I’ve worked for had gone. I’ve lost friends, companions, colleagues. I’ve lost part of my independence.
I’m certain there are lots more stages of emotion to having a chronic illness.
Before I sign off I do have one positive stage.
I see beauty in the small things in life. I find peace and beauty in things that would have passed me by before. I also have some concrete friends now that have stuck by me that I know will be here for the long haul and for that I am beyond grateful.