I Blog on Tuesday, Invisible Illness

the day my brain and body disconnected

brain-disconnected
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Eighteen months or so ago my mind decided enough was enough. For years and years and years I had hidden from myself and the rest of the world that there was a problem.

I didn’t really know what the problem was I guess I just thought it was normal the way I lived, the constant worry, my head always spinning out of control. Never believing in myself, constantly trying to be more, to do more, to be the hostess with the mostest in everything I did.

There was a catch though. Somehow I had at some point in my life I developed a self destruct button that I would push whenever things felt like they were going too well for me. I had convinced myself a very very long time ago that I didn’t deserve all the goodness in life.

I had a very boringly normal kind of charmed childhood right up to high school. School was school for me but my finger was always hovering just above the self destruct button. Whether it was to do with my grades or friends it didn’t really matter what it was self destruct was never very far away. I developed a coping mechanism that if I made things, bought things, gave people things then they will stay around. It seems really silly to write it down and say it aloud. But it is how it was for me. This is how it has been all my life.

Make a gift, buy a gift, make a cake, do something for someone, leave a gift and around in circles it goes. In between all of this there have been times of drinking lots and lots of drinking, trying to be the life of the party so that people want me around and won’t not invite me along (though in the back of my mind I was (still am) pretty certain I am the pity friend).

This has really been the cycle of my life. I don’t understand it. It makes no sense at all really, over and over I am told I am loved, needed, wanted but time and again I self destruct this. Until that is my mind finally decided it was time for the big disconnect. The biggest of them all.

My brain disconnected from my body. The left side of my body stopped listening to what my brain would tell it to do. Which meant that my arm wouldn’t hold a cup or open a bottle or even lift up when I told it. It also mean that my leg wouldn’t walk when I wanted to, I couldn’t walk for a long time without the aid of a stick. There were so many things. Every now and then I still get pins and needles for absolutely now reason and occasionally I limp when I am tired.

This brain and body disconnect is called Functional Neurological Disorder. It is actually a lot more common than people know. Its cause is unknown which makes it more complicated because often doctors, nurses, other professionals just don’t know why things aren’t all working together. Lots and lots of tests are run they will all come back within normal limits which only makes it more confusing for me the patient (or someone else). No-one knows what is wrong, you can be put in the too hard basket or the making it up basket.

You can get sent from doctor to doctor, psychologists, psychiatrists, neurologists everyone telling you that things will get better in time. If you can just work out that trigger. Then there are others with FND who are certain that their brain and body disconnect is in no way psychological. Which is quite possible but if it wasn’t in the beginning it bloody will be down the track because no one can live knowing that their body and brain aren’t doing what they should with no answers and not go slightly mad in the process.

I can look back over my life and can absolutely connect the dots from there, to there to here and I am in no doubt that my FND is definitely related to my depression, anxiety, PTSD, dissociation and depersonalistion. That said it still doesn’t always make sense.

It is a long way back from a brain and body disconnect. It doesn’t happen overnight and it doesn’t happen without a lot of hard work. Physically and mentally. There was a time not all that long ago walking around the block would have been a near impossibility. Now I can go off on a walk by myself without a walking stick! Physically I have improved out of sight so I am told. The memory issues mean that I actually don’t know how far I have come! Mentally there is enough to keep a team of psychiatrists in work, holidays and fancy cars for years!

Sometimes it is hard to not get angry and think why me. I guess the reality is why not me? Why am I so goddam special that I should avoid mental illness and associated problems. Goodness knows there is a 6000 word document that is just the cheat sheet my psychologist has of reasons why it should be me. Sure I am blessed with an amazing loving family, there was no abuse within my family. But there were plenty of other things going on in my life, many little, some bigger add them all up they create a perfect shitstorm of exactly why me.

Cat xoxo 

Linking up with Kylie for #ibot

 

14 thoughts on “the day my brain and body disconnected

  1. Sharing your truths is never easy. I hope you are travelling okay-ish. You have been through so much. Time is our best friend and also our most loathed necessity. They say time stands still for no one but anyone working hard to heal knows how stagnant the minutes in an hour can feel. Much love Xx

  2. A hard road to live and a hard post to write I’m sure. I truly believe the mind and body are so connected which is why the physical eventually manifests the mental. It sounds like things have improved from the worst times and I hope writing is part of your therapy towards feeling whole – physically, emotionally, mentally and spiritually – or at least as whole and together as any of us get. X

  3. It is good that you can talk about it. It would not have been easy. You certainly know about what is going with you. Some people go into denial. You sound like, ‘okay this is my lot in life for whatever reason and I’m not letting it stop me from living my life.’ Keep writing. So good to know there are brave people like you still around. Thank you.Mxox

    1. Thank you Maria. I think that I got to here because while I love to talk there is a lot of shame around things that I just couldn’t face. So I pretended and hid from it all for a long time. Gotta get it out now. I also think that in part I was not being true to me I have always wanted to write but found every excuse under the stars as to why I couldn’t, now all the excuses have been stripped away I feel like I need to but not in an obligatory way. xoxo

  4. It can’t have been easy to write this post – you’ve been through the wringer, that’s for sure. You know, every time I read your posts, I’m always struck by your resilience. Can you see that in yourself? It reminds me of that A A Milne quote “you are braver than you believe, stronger than you seem and… more loved than you know.” Keep on going – every forward step you take is a step in the right direction.

    1. I don’t see much in myself except the shitstorm of destruction that I leave in my wake Sammie. I honestly struggle to see the good in anything I do. I could list off a huge number of things and then next to every one have a reason why that isn’t a good thing me but if you did it sing your praises. I am a bit self-depricating I don’t mean to be I just don’t see the good. and I don’t mean to do it in a martyrdom sense either. Lots of therapy to work through this!

  5. The mind and body are so amazingly interconnected and the stresses of life can show up in so many different ways, both physically and mentally. I can only imagine how tough this post must have been for you to share, but hopefully you feel all the better for it. The work you have done and the steps you have taken, and continue to take every day, shows how strong you really are.

  6. I don’t know what to say Cat. I think you are bloody amazing. I often wonder how you manage to write so well when struggle so much with memory loss but you just keep getting better and better. This was so easy to read and so well articulated, sad as it is that you’ve been through such a shitstorm. Up and up Cat. As others have said, you are stronger than you give yourself credit for. I saw on insta that you had a set back today. Whatever it is please be kind to yourself and know that you’re a fighter. When life knocks you down you get back up, look it in the eye and refuse to let it get the better of you. You’ve already proven your metal xx PS….it turns out I had something to say after all 🙂 xx

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