November 2021

Wait. Where did my videos go?

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Wait. Where did my videos go?

For those of you who are new here but read the About Me section, you will see that I have issues related to brain fog.  Along with my brain fog I have had six major concussions in my life (unconscious more than  10 minutes), followed by two traumatic brain injuries within a few months of each other requiring rehabilitation to walk and talk again, among other things.  With a traumatic brain injury, wires get kind of crossed or even connections lost.  There is a lot of relearning and regrowing those connections can do but you have to exercise them.  To keep those connections exercising, I work puzzles, play mobile games that make me find things, try to follow recipes, and keep a calendar.

I am an avid LEGO builder.  I love LEGO.  I discovered them again in my adult life while watching different streamers on Twitch on the days I can’t get out of bed. [*Side note:  A streamer?  Twitch?  According to Websters dictionary a Streamer is: a flag that streams in the wind especially : PENNANT b: any long narrow wavy strip resembling or suggesting a banner floating in the wind.]

That is not the type of streamer I am talking about.  Twitch is a service that streams individuals on a live visual stream that you can react with in a designated chat section.  It’s a streaming service somewhat like YouTube.  You can use your web browser or download an app.  It became popular for gamers to stream themselves playing games for people to watch along with them, however it has grown into hundreds of categories besides just video games.  LEGO builders use one of those categories.

I actually started watching my son stream games that he plays online.  There are many people that sign in and watch him as well.  You can chat with others about the game or just simply about life. Oftentimes the streamer interacts with chat as well.  If you are stuck lying in bed in your room, you don’t get a lot of human interaction unless all your friends are available..  If I am watching someone stream there may be others on there from all time zones across the world.  It’s a safe place to chat and you control the amount of information you want to share.  I have made many friends and have even talked to a few outside of the chat room on a more personal level about things like arthritis, for example.  What does this have to do with LEGO you ask?  If my son was not streaming I would browse around for other things of interest to watch.  I watch a wide variety of things from knife making to cross stitching.  Interacting with these streamers gives you an outside connection.  They usually tell you about their lives, show you how to do specific things or just chit chat along with everyone else…..ahh, adult conversations.

After wandering upon a LEGO streamer, I noticed that the instructions are in picture form.  If you have brain fog or damage in any way, you will know that following instructions, both verbal and written, is extremely challenging.  You have to read the instructions which typically have ten or more steps and then comprehend them before trying to remember what order they were in.  Yes, that is very difficult for a person with brain fog.  I discovered that the instructions in the LEGO set are pictures with arrows. You follow the directions shown in the picture to build the set one step at a time.  There are small sets and very large sets.  It’s an at-your-pace type of activity.  You can work two pages or twenty and then take a break.

I decided that videoing my building sessions and posting them on my blog would be a good way to reach out to others who are having brain fog or issues, and explain how they help me, what I do if I run into a roadblock and show how it can be used for therapy.  I have issues with fine motor movement, following/understanding  directions and difficulty with pain in my joints and head.

I started with a very small set in my bed with a little table over me while I was lying down.  Being able to take my time and manipulate the small pieces into a final shape was like finishing a race for me.  It boosted my confidence and made me feel like I could actually accomplish something.  Because I have to take frequent breaks (sometimes even days) I decided that I would not stream as that entailed “running the show” which is virtually impossible. So instead I decided to make these videos and post to my web page for others wanting to learn a new task, or even just have simple creative time.

My first video was just a small part of my build.  I had to take several breaks and I am not able to splice different sections together (that is way beyond my brain gauge) and would have my husband do that part for me.  I was excited to post so I just put up a small section that discussed ways to work around issues with brain fog or even physical issues with your hands.

I became very involved in this LEGO community and people stream amazing content.  Have you heard about the 9,900-piece Titanic set?  Yeah, I can’t do it but there are several who have.  Suddenly my anxiety crept up on me.  I felt inferior and was afraid I would look unprofessional in my videos and quickly my anxiety did take over.  I chose to delete my videos and not do them any longer.

Two days later I was in a stream where the streamer was building a unique small project.  He was building it for the LEGO #buildtogive campaign.  You just simply build a star out of LEGO and post it with the hashtag to any social media.  Lego will give away a set for every star posted under that hashtag to 1.5 million children in need.  My streamer made a statement that resonated back to my videos.  He said to just build what is in your heart with these stars.  Don’t start comparing them to other builds.  That is not the reason for this build and that is not the reason we build LEGO in the first place.  He was right.  Why would I compare my building videos with other streamers who do not have the physical or mental issues that a person with chronic illness has?  I build LEGO because it makes my heart happy and I started the videos (perfect or not) to show others they can do it too.

My videos will return to my website within the next week.  Thank you @Marvelousbricks!  Here is the link to the LEGO information to the #buildtogive campaign .  https://www.lego.com/en-us/build-to-give

If you want to take the time and look around Twitch, don’t get overwhelmed. I follow some great people and would recommend searching them up.

TheLocalBrickshop: Streams sorting LEGO and gives away free minifigures or poly bag sets every Wednesday.  

AZpinoy:  Streams LEGO technic typically building all of the cars such as the bugatti and speed champions racers.

Hyenaplus: Streams RPG tabletop games (role play gaming – like dungeons and dragons) and is about to sort some space LEGO

TexaxHulaMan:  He is a woodworker.  Has multiple cameras in his shot so you get to watch every aspect of the build he is making

I hope you find this as a new world opening up to you.  Sit and watch a stream, interact, learn something you can do while you’re down or learn something you can do with family.  Keep your journey moving.  Love and Hugs to all.

Mental Health Should Be A Priority

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Mental Health Should Be A Priority

Mental health has historically been seen as a “sickness of the weak.”  The world has slowly started to see how many people have had a time in their life where their mental health took a backseat.  People are not afraid to take their spiritual or physical temperature, but avoid anything to do with their mental temperature.

Your heart in your body is a very important structure.  You feel emotions of love in it: your pulse increases,it feeds blood to your body parts that feel spirituality coming into their body, and it is the main source of your brain making clear decisions without even thinking about it.  Your brain says: breath, move your legs, scratch that itch. But it also says laugh, cry, care.  Your body is typically talked about when talking about your shell. Your spirituality is typically talked about when talking about your faith or beliefs. What about our brains?  Why is it hard to talk about the job of your brain when it is such an incremental part of life?

Mental health is an urgent part of our entire working system.  It’s wires and connections control everything your body and soul use.  I would hope that from this post you do see that MENTAL HEALTH should be a priority.

I wonder if we called it something else? Because the word “mental” is associated  with our weaknesses and not our accomplishments.  Caring for your mental health keeps you healthy in general.  What if we called it “cranial health” or “brain health”? Would people then see that the spongy soft tissue thing filled with fat and water is not just a regulator of emotion?  Keeping your brain healthy keeps you in a forward motion…literally.  When I talked about your heart, I talked about it being affected by emotions.  Your kidneys are affected by your emotions.  Your whole body is affected by emotions.  Why would we not want to take the best care of our brain’s emotional connection to the body as a priority?

When I started taking an anti-depressant my world changed.  I literally woke up one morning, stretched and smiled, and was so ready to take on the day.  My neurons don’t fire in order.  I need medicine.  That does not make me a weak person.  People with kidney disease wake up and take medicine.  Their kidneys are breaking down.  That does not make them a weak person.  If a person had a massive heart attack, wouldn’t you want them to take their medicine?  Would you be sure everyone around them knew that they could have an incident and to just be aware of it?  So why would I not let my family or friends know I take medication for a malfunctioning neuron and could have an incident?

I’ve been on an anti-depressant for years.  I’m not depressed.  In-fact, I’m a very positive, happy person.  That does not mean that I am going to stop taking my medicine.  Just like you wouldn’t want the person with the previous heart attack to stop taking theirs.  Why would we want to be unwell again?  We both have proven that we have a disconnect in our body.

I  once heard my six year old son say “I don’t want to be here anymore, mama.”  That did not make me want to hide him away and not talk about it with others for fear of what they would think of him.  It made me want to get him help, just as if he said he was having a hard time breathing.  He was having a situational depression linked to an incident that happened in his life.  After a few years of medication, he was able to stop.  His neurons were back in order and he took on the world.  He is productive, loving and very fun.  He has lots of friends who are there for him just like he is there for them if they need help in a situation.

I do take my brain health temperature.  I do see when I am feeling a bit out of sorts.  I used to hide it from my family.  I didn’t want them to see me as someone that needed to be cared for or tiptoed around.  I tell my family up front and right away if I am needing a little extra time.  They see that my brain health is connected to my physical health.  I immediately talk to someone, write simple statements on my arm to look at for a day (such as stay grey, stay in the middle) and then I continue on.  Sometimes it takes a few days, but by making my MENTAL HEALTH a priority I am living my best life.  I wish the same for you.  Love and Hugs to all.

When to be real

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When to be real

[This post will not be edited and corrected for spelling/gramar by my daughter….It will be real]

Something interesting (hmmm…..interesting is a funny word to use here) happened to me yesterday.  I started a post about when your having a bad day.  It’s funny because I didn’t realize it was a bad day.  People with chronic issues (especially brain fog) don’t always know when it’s going to be bad.  Sometimes we are even in the middle of a bad day and are oblivious to it.  It’s what happens with brain fog.  Your clueless.  You go on about your day knowing your not yourself  (or even who yourself really is) but even that doesn’t always register that it’s going to be a bad day.  You don’t remember what day, date, time and sometimes season it is.  It was however: a bad day.

I went about my day as usual.  Woke up, surveyed the land and was able to make it to the couch. (yay me!)  I wanted to build LEGO but my brain just couldn’t compute doing it. I literally could not put the process together in my brain how to set myself up to build.  I kind of knew then my brain fog was a bit more than usual.  Instead, I set my things up on my table that pulls itself up to my typing level and followed a routine.  Routines are extremly important.  I turned on twitch. (Twitch.TV has been a God send.  I have met wonderful people and I don’t have to interact or I can)  My streamer I follow frequently was on that morning.  I like to interact in his stream.  He tells everyone new LEGO news and sorts buckets of bricks and minifigures.  It is one of the streams I tend to interact the most in.  But –  I didn’t….I just turned it on and sat there.  I sat there with it playing…knowing I wanted to say hello to my friends but I just sat there.  It just played, more like a radio show where you just listen but I wasn’t even listening to comprehend. I didn’t hello say my usual hello to everyone in chat.  I just sat there…listening, but not.  

On days I have heavy brain fog it’s like there is an intake system and then a yield sign, sometimes even a stop sign.  Sounds and sights go in but it takes minutes, hours or sometimes days for my brain to understand what is being said or happening.  So I sat and listened.  My brain didn’t even compute really that I wasn’t doing anything.  When I say you don’t compute things till the next day sometimes, this was one of those days.  I realize today that I missed yesterday even though I lived it.  I can not even describe the rest of the day only to admit I had an anxiety attack….not a small one either.

I’ve had multiple things that I’ve needed to make decisions about over the last few days.  They aren’t even big decisions.  The stress of not being able to think through them but knowing that something was there needing to be done added to me having a bit of anxiety.  It’s like walking into a room and not remembering why you went in there but know it was something important.  The only problem for brain fog is it’s like walking into ten rooms and not knowing what to do and then standing in the hallway trying to decide which door to try again and not even knowing what is in that room.  You just know all ten doors need to be opened.  Once I start to have anxiety over things I don’t even understand  other things wrap themselves up in it.  I couldn’t walk straight.  My head pressure from my CSF leak was increasing to an intolerable level.  I started to realize I am going to be like this forever and I will ultimately be a burden on my family.  Suddenly those ten doors feel like one hundred.

I was in pain, I was grossly  confused and I knew I was going to be completely dependent on someone else to make decisions for me.  I’m actually aware during this time that I can’t even care for myself.  The only thing I know is that I must get myself to a place where I feel safe (it’s kinda my MO – quietly move to myself to a place of safety knowing that eventually my family will come help me when they see I’m not where I was previously. Don’t draw attention to myself.)  I calmly walked to my room, got in my bed with my warm blanket and called a family member for help.  They were not aware that things were spiraling as bad as they were for me.  Remember, I was sitting on the couch.  I was smiling.  I don’t like to show I’m having troubles as people with chronic issues do to hide the bad (they don’t know what is happening inside our brains.)  My son’s girlfriend came brought me medicine and sat with me.  I lay quietly in the dark with her at my side.

I knew I needed to make myself calm so I closed my eyes and thought of positive thoughts.  When my son had anxiety as a child we would do a breathing technique and made up one vision to focus on.  The vision was him swinging on a swing with me pushing him. In his vision he would lean back in his swing watching the sky. Back and forth, higher and higher.  He would imagine himself  laughing out loud and smiling with shear joy.  This is the vision that I use now for my focus.  It brings me joy to envision this happening.  I closed my eyes, focused my thoughts on that vision and allowed my medicine to help.

I slept for several hours and when I woke my husband came in to try to understand what further help he could give me.  I’m not always able to explain what happened or is happening at the moment if I am still having brain fog.  He understands this and just offers support. He knows he can’t fix anything or even ultimately make things better but he knows that just being present helps.

For those that have a family member with chronic issues, supportive care is an absolute must.  Know that you can not always fix something but that your presence in some way can make this impossible life a livable one.  

Today I’m having a better day.  I’m on the couch again and I’m typing.  I won’t remember everything I typed later and I will be in a bit of panic hoping it wasn’t awful.  I’m glad I chose to type this up though.  It doesn’t explain it all or even in as much detail as it could have been but people just need to know sometimes we need to be real.