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.
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.
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.
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.
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.
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.
Were you misdiagnosed with something else before receiving a MS diagnosis?