Written by Benjiman Grant

Out On The Wiley, Windy Moors, We’d Roll And Fall In Green.

Today I talk about the brain fog that comes with CRPS

Featured Image – The wonderful @missedenvader creates wonderful items at StichesB4Glitches made this wonderful Jigglypuff! Ordered last week after we caught our first one on Pokemon Go. It popped up on my instagram timeline, so it had to be perchased! She is a fellow spoonie, so if you like her work please support her and buy a piece!

Title Song – Kate Bush – Wuthering Heights – Stuck in my blooming head since friday! I do love this song. It’s a shame I cannot replicate the dance from the video.

Brain Fog

So CRPS, and in fact many chronic pain illnesses are associated with brain fog. This has affected me in a few different ways:

  • Forgetting names
  • Getting lost in the middle of sentences
  • Forgetting to do things
  • Losing words and meanings of words
  • Memories blurring and combining
  • Making mistakes
  • Not knowing what day it is
  • Nonsensical conversation
  • Blanking out
  • Ignoring things around me
  • Confusion with spurts of heightened emotion

Now I understand a lot of these do come with age, and a lot are symptoms of many illnesses. These are sadly a daily occurrence  for me, the pain spikes and I feel so many of these things happen to myself.

I often thought many were linked to my psychological state, but after much therapy and this symptoms still being prevalent, I am fully aware that they are linked to CRPS. It can be overwhelming feeling like my body is failing, but when I lose parts of my mind I also lose my sense of self.

CRPS is fundamentally a neurological condition, with the basic description being, a confusion of the nervous system and pain receptors. I guess I will never know whether it is the direct feeling of pain, or the consequence of the neuro side of CRPS. Perhaps and most likely it is a combination of the two. Also writing this I realise, that it has the potential of being a side effect from the drugs I take, and have taken for 8 years.

My adoption of writing and adding a creative outlet has definitely helped me stay more focused and sometimes I don’t feel the symptoms of brain fog as much. However, as I was aware when I have been socialising recently I can sometimes find it hard to concentrate in conversation. I feel like I lose myself, trying to focus so hard on what I want to say, but then I want to listen and be part of the conversation. This leads to me forgetting what I want to say, or when I attempt to speak I make mistakes and drift. I can see it often when I write these blogs, I will have a purpose or direction to start with and sometimes I feel like a bit of Ross Noble stand up, I lose my direction and end up not completely sure what I want to say. This can leave me contradicting myself or simply getting frustrated at not being able to finish what I start.

The slightly more serious side of this comes when talking to my Doctors, discussing my condition. I write lists and hope I can discuss things, but my ability to articulate verbally is slow and muddled and easily interrupted.

I am also hyper-aware of how my moments of brain fog affect the people around me. I sometimes just want to get out all the thoughts mounting up in my head, this can escape as verbal diarrhea, I can flourish with conversation, but also get lost in my own thoughts. This can leave to confusion or misunderstanding at me. Which in turn frustrates me further because not only am I struggling to say what I want, but also feeling like I am more of a hinderance and burden. I guess like talking to a chatty toddler, I can just speak and speak. I do however really want to make a point and it can just be difficult to feel unheard, due to my own miscommunication.

The brain fog does have relatively dangerous consequences in respect to my health. I can easily forget to eat, to take my medication. Simple jobs become more difficult, cooking can be a worry as I have had many accidents, with burning, melting and other adjectives for mistakes!

Side effects are often left behind as something you just have to deal with, but they can begin to accumulate and actually become part of your condition. I feel so undertreated at times for the less obvious symptoms of my condition. I realise more and more how much I require help, as independent as I may hope to be, I need to accept the future is only possible with support and deep care. This is something I have not been willing to ask for simply due to my own pride and internal hope I would recover. Surely though If I can accept tablets and living aids, I should be able to ask for any and all help possible. I am not admitting defeat, I am not losing the battle, I am standing up for myself and allowing myself to vulnerable, might be scary and intimidating. Without asking I won’t get anywhere.

So yeah, the brain fog sucks. many of us suffer with it, I was unaware of its effects for so long. I didn’t even have a term for it, until very recently. I can only suggest, become part of Chronic and Invisible Illness communities. They support you and offer love, but also they understand and can vocalise things you might not have directly realised. I personally have found a very amazing network of support via Instagram. It’s amazing how sharing a picture and some words can really connect to other people. Following and interacting, has taught me so much more about myself and condition.

Now, what was I talking about?

Wuthering Heights

If you are able I request you get up and dance around like a complete goof to this song. If you are confident enough, I would love to see you video yourself dancing and singing along. This song obviously is a love story, but I chose it because of the video. The dancing and characterisation that Kate Bush adds to this song is beautiful. She is so vocally and physically expressive and it really enhances the depth of the music. There is two version of the video, I prefer this one personally, and also its kinda foggy in the video…ooo ‘ark at me making connections! Enjoy!

 

 

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3 thoughts on “Out On The Wiley, Windy Moors, We’d Roll And Fall In Green.

  1. Words…. I wish I had the right words to say to bring you comfort, and I’m sorry that you’re feeling down, my friend. I wish I had the confidence to sing and dance and send you a video. I love to dance, and I’m good at it! I don’t think I can sing, but people tell me all of the time that I have a beautiful voice, I think there must be something wrong with their hearing. Maybe when I drop a few pounds I will have the confidence to record myself acting like the big goofball that I am. No promises, but for you, I’ll make an effort! 🙂

    Liked by 1 person

  2. I used to think I was the only one feeling the brain fog you so eloquently describe…yes, ELOQUENTLY…I know first-hand how frustrating it is to feel as though you have lost the one thing we thought no one could ever take from us – our minds, our thoughts – you are not alone and I feel some level of comfort knowing I am not alone. I too make notes for my doctors’ appointments, only to come away from said appointments frustrated and with a feeling of complete emptiness. I keep a pain and symptom log so I can share it with my docs; it’s the only way I can actually articulate what’s going on with my body and brain. I’m at a point of frustration bc of my brain fog right now – after almost 10 years of living with these monkeys (chronic illness). You are soooo not alone, my friend!

    Liked by 2 people

  3. Wish I had the energy to get up and send you a video…this is *so* what I’d do when I was ‘only’ mild/moderate.

    I love the way you write. Only just found you but I’ll be back

    …if I remember 😅😅😅😅

    If I don’t comment in weeks gimme a poke on IG to come and look at your goodies….I’ll just wait again til someone can articulate the crap that comes out of my mouth into words again 😀

    Liked by 1 person

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