My Brain Has Sparkles on It

My brain has sparkles on it.

The brain problems I have aren’t mental, they’re neurological.

This is something I’ve had to accept to myself.

Progressively worse

I’ve felt & noticed it getting progressively worse since my diagnosis in 2006, but tried to deny and hide and avoid it so I can continue with my lifestyle and business.

I recovered with IV steroids from my first relapse and thought I could continue to live my lifestyle, which was working but slowly over time got to now, where I don’t feel I can cope with the life I created, as my cognitive symptoms have increased and my recent MRI came back with more lesions.

I refused to accept it

I like to be in control of everything in my life so it is difficult to accept that you cannot control your brain.

I don’t want to tell people because I don’t like the attention or to be treated differently. I have always been very independent and like to do everything myself and don’t know any other way to be, I don’t like people helping me, so to admit I can’t do all the things I used to do the same way is scary so I refused to accept it even when I was told.

Scared of my brain

I only ever accept something when it’s the very last resort, so I have spent years researching and self diagnosing as mental health. The “mental health days” I used to take weren’t mental, they were “MS days.” Days when I couldn’t function and would panic because I was scared about going anywhere or doing anything because I couldn’t even work out how to begin the day or get dressed. I often felt scared of my brain.

I only really understand things now when I feel them not when I think them. Repetition and routines are comfortable because I don’t have to think about them. It’s the thinking part that I can’t always do.

So when I can, I get mad bursts of having to write everything down or draw or socialize, when I feel functional, which is probably why I have these “mad bursts” of feeling normal in my brain again – because I’ve felt over the years it’s become less glimpses when my brain is fully functional, and I spend more time in this brain fog and clutter.

Brained-out

I have a way of jumbling everything up, backwards and upside down and into a big mess I can’t make sense of.

I panic daily because I can’t control it and I don’t know how to explain to people when it happens. “I’m not very good at braining today…”; “Sorry I’ve over-brained today.”; “Sorry I’m brained-out.” I’m always making excuses and to myself searching for other options than MS.

I’ve always thought I could overcome everything by myself. Myself will only admit to myself that I can’t do it myself when I have searched EVERY other avenue.

The cognitive symptoms are worse to me than when I lost the use of the right arm/leg/visual field, because it was out of my control – I thought I could manage my own brain. At least I didn’t have to explain to people and I couldn’t hide those symptoms.

Working less and less

I don’t want to stop working because it knocks my confidence and I’m always searching for purposes, but what do I do when I don’t feel like I can do it anymore? I can’t guarantee my brain will be on form each day so am panicking all the time about every appointment booked. The pressure of my own business and the commuting, is too much braining. And people think I can do it because I used to, but for years I’ve been struggling and now it’s becoming noticeable – I’m working less & less and making up excuses to get away and scurry off on my own so no one will notice.

People sometimes ask what’s wrong, and I don’t know – I can’t explain it. Often people are explaining things to me and I don’t understand what they’re saying, but I’ve learned how to pretend I do because it’s just easier.

It’s becoming impossible

I didn’t want to adjust my lifestyle so I have been trying to get by with coping mechanisms, but slowly as I’ve felt it deteriorate more it’s becoming impossible for me to manage alone. It was difficult to say because I don’t want any fuss and I used to be able to do all this, other people can so why can’t I? I’m always comparing my life to other people’s – to see what I think I should be able to do and what might be expected of me.

I’ve been getting panic attacks at work for years but I’ve learned to hide them through my research into mental health/anxiety. It’s a panic because my brain has stopped working, and I’m under pressure to work and I don’t know what I’m doing and I feel like I can’t see. I have a client in front of me and I have no clue what the hell I am doing.

Seems ironic

This seems ironic that it would scare me more now after twelve years experience than when I began tattooing. Often I feel too overwhelmed by having to get my brain to function and I don’t even know how to approach a basic tattoo, as well as struggling to see it the same way.

Anything cognitive – executive functioning – planning, timing (even telling the time), ordering things, numbers, scheduling, reading, words, it takes me ages every day to do basic things, and I can’t cope with having lots of stuff around – how to put things in order and what to do with it all. So I panic.

I always feel like I need someone around, I have often joked with my partner & friends I need a carer.

Don’t know how to describe it

Frequently I have numb and tingly fingers, which can last days or weeks.

I struggle with my vision and light daily but despite tests at opticians my eyesight has not changed. I often feel like “I can’t really see everything” but don’t really know how to describe it. Like white blind spots but small enough I have adjusted to or I just look around it. But I’ve noticed it becoming harder.

My sensitivity to the cold is intense and my body and brain stop functioning. I just slow down and stop working. I’m not really very good at describing or articulating anymore. I like to play brain games to practice, I find this does help and gives me confidence.

Retire ASAP

I am always worrying about retirement and why I feel I need to plan and save for the future for when I am unable to work. I opened the shop last year with the main intention to be able to “retire ASAP”. I am only 32 years old!

I secretly knew that I would struggle one day to work full time, at least in this career – so would need to prepare.

I crave to learn everything, because I’m struggling more to retain information and I constantly feel rushed, as if I don’t have the same time as everyone else to do what I can now, or time isn’t the same for me – and I haven’t been able to understand why I feel this way.

This is ridiculous!

Even my words don’t make much sense a lot of the time. I’m talking then I have no idea what I’m saying.

I don’t like making plans because I get anxious about how functional I will be on that day. But I have appointments booked and people rely on me for work, so I feel pressured and I don’t know what to say.

Some days quite often I look at what I am actually doing and how I’m going about it and say to myself “this is ridiculous!” because in my “normal” mind I can see I am going about everything all the wrong way.

It has only got worse

I have over years seen therapists, counselors, CBT, medications (citalopram, amitriptyline, fluoxetie did nothing), countless books, general medical research, been tested for diabetes/insulin & hormones, changed diet, lifestyle changes, spirituality, religion, philosophy desperate to try and manage it as mental health and be in control. It has only got worse despite the fact I know I am a positive person and happy with my life.

When I have no stress and minimize my lifestyle, it’s just more noticeable.

I feel like I have to be going to work and earning money and be successful to show people and it scares me that if I don’t, I will be treated differently. I also worry what else I would do, as art has been my only career and passion. But I find it so difficult to say when I will be able to focus so I make excuses, then often can’t remember the excuse I have given!

Scared of commitments

I feel scared of committing to a movie or the cinema in case I can’t understand it or focus. Often I won’t even have followed the movie at all and I always laugh at how I don’t like or understand plots.

I get anxious to be in situations around people for long periods, so I don’t go out as much, without knowing I can tell people I can’t stay long as I have somewhere to be. I rarely if ever do.

If there are lots of people or a lot happening, lots of options, I can’t make any decisions or choices.

If I drive to work, work – I need to be aware I have to drive home. So I can’t work that much, because after work my brain might not be very good at driving. So some days I make up reasons to not drive or go to work.

I don’t understand how to use keys or what way keys turn in locks and no matter how hard I try I always get it wrong. I don’t know how to make plans or anything logical.

It’s isn’t funny

It takes me ages to learn an area and I still rely on my SatNav when I’ve been there many times. I always walk out of a shop the wrong way and people laugh because it’s funny, but it isn’t funny when you’re on your own and don’t recognize where you are.

I feel often like I am crazy and often joke that I have lost my mind or becoming eccentric and my friends used to joke that I had dementia, and I am like an old lady because I have to go to bed early – because I know if I am tired the being tired on top of it is an added difficulty.

People are always asking me in various situations, “Why did you do that?!” when I’ve done something silly by mistake. I have no idea! Because I don’t know what I’m doing most of the time! Everything seems complex.

No pattern

But some days I am ok and there is absolutely no pattern, it fluctuates and this is what scares me and increased/created my ‘anxiety.’ I know how to manage anxiety, but I can’t seem to control or manage neurology.

I have to say things to myself out loud in lists when no one is around. Or when they are, in my mind – lists of what to do next, what I am doing right now. I have to write everything down these days – EVERYTHING. More and more each day I spend writing notes. I constantly tell myself in order what I need to do, the most basic things are listed.

Loud noises, lots of people talking, lots going on, mind blanks out and I don’t know what I’m seeing or what’s happening, I can’t follow it all.

People ask what I’ve done today. I don’t know, I feel like I have done LOADS but when I list it back and say it aloud it really doesn’t seem that much at all. It just felt like a LOT. Because I had to think every tiny thing through and make sure I’m doing things properly.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (8)
  • mollyculelove
    1 month ago

    Thank you for sharing that. Well articulated! I have told myself 10,000 times I am going to type out and share my story on this site and then I forget! Or get overwhelmed at the idea! Yours nailed it! It’s almost like someone detached our heads and shook them up and reattached them some days. I’m 31 years old and my mom is my caretaker for me and I’m so so thankful she is willing to do it for me! I walk into walls, I fall, I forget to take my medication, I am not hungry with my infusions, I can’t drive anymore, some days I’m a total as$**le, I forget everything including the day of her birthday which terrified me and my own PIN number, my eyebrows are falling out maybe from my infusions or MS, my bladder leaks on a good day…MS is a brutal disease and doesn’t discriminate with age. And asking for help is ok! I have barely been diagnosed a year and this disease has totally rocked my world and the cognitive issues terrify me the worst because my brain has been by far the worst impacted by my disease…they found around 35 lesions spanning my right and left sides of my brain and boy do those come with confusion and inability to focus and do things quickly and remember among some other gems you so eloquently described! Thank you thank you for sharing!! So many people here understand what you’re saying!! Check with your insurance about a caretaker and they can provide one or someone you know and love can fill in that roll. I figured that out after I was discharged from the hospital. Contact me if you want more information 🙂 take care!!

  • lcal
    1 month ago

    Gemma
    Thank you for writing about such a hard to articulate topic, yet for me, you nailed it! All of it actually. Trying to explain to others how my brain literally thinks backwards or upside down one moment when another time it will miss the obvious, be it a pun or a logistical problem and jump to an elaborate answer and yet other times I have had to come out (while seeming to have a conversation with someone) look them in the face and say, I’m sorry but I have not idea of any words your saying. I am not being rude doing that but feel worse continuing to allow someone to continue talking when to my brain it’s jumbled noise. I used to pride myself in being decisive and now if I had 2 choices of TP to use I’d not be able to decide. Its has all gotten very tiring on every level and leads to much isolation which I don’t wish for anyone.
    So Gemma, I too have been looking for help of any sort and plz contact me if you’ve got any thoughts
    Lisa
    ps. my lifelong bff’s tattoo artist is Gemma, I wonder?????

  • wolfmom21fl
    3 months ago

    there is far too much in your story that i am writing into MY story. it makes me sad. i can’t remember how to braid my hair that is long enough to sit on now so i cut it off. i can no longer remember how to tie my shoes so i got some that do not need to be tied. i get lost so often going to places i have been going to for years that i have stopped driving, which is actually a good thing because my visual field has shrunk to the point where i have no peripheral vision at all and my depth perception is bad enough that very soon i would end up having an accident because everything looks further away than it actually is. I have dropped my great Grandmothers casserole on the floor which shattered into a million pieces because i thought i was further over the counter than i was when i let go of it. I also thank god every day that someone invented spell check even tho i as a young person i came in 2nd in my state in the All Star Spelling Bee, but today am lucky to remember how to spell my own name

  • ShelbyComito moderator
    3 months ago

    Hi @wolfmom21fl, thank you for commenting and sharing a little bit about what you’re going through. I can imagine all of these changes must feel so frustrating and scary, and I think many people here can relate – which means you are not alone. Thank you again for sharing and please feel free to do so anytime. We’re here for you! Best, Shelby, MultipleSclerosis.net Team Member

  • wolfmom21fl
    3 months ago

    ty

  • collena
    3 months ago

    I’m sorry, I know how hard it is- finding yourself completely lost on roads you’ve driven for 30 years, the blind panic of knowing someone is speaking english yet you can’t understand a word they’ve said.

    I’ve joked about needing to use a heavier weight oil in my brain because of it slipping gears- stuff that I want to funny but it’s not. Anymore.

  • Flowers For Algernon
    3 months ago

    Thanks for the post, and I can most definitely relate. You’ve come to the right place. There are many wonderful people here that have definitely helped lighten my days.

  • Erin Rush moderator
    3 months ago

    Hi Gemma Kennedy! I think you touched on so many things that our community members can relate to — the drive to keep working, the struggles to maintain a social life, the effort to maintain mental and physical health, etc.

    I am so glad you took the time to share your thoughts here, so we could all read about your experience with MS. There is this commonality with this disease, despite the fact that every person seems to experience MS uniquely.

    Thank you very much for sharing! Best, Erin, MultipleSclerosis.net Team Member.

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