Whirlybrain - WhirlyBrain

Never feel like an idiot.

I’m stealing this title from a friend of mine. It wasn’t during a prophetic talk or during time time of need. It was a simple little sentence in response to having a good day. He simply sent me one line in a message “Never feel like an idiot, people who would look down at you do not matter”. He is so right.

It’s hard to go into any situation where your going to encounter people and not have that twinge of worry that your going to look stupid/idiotic or even ugly. We ask ourselves questions like “What if I say something dumb? or “What if people are dressed in nice jeans and I have on these old shorts, will they look at me weird? We ask ourselves those questions out of fear. Fear of human response to what we will take home and live with for a long time. I am very guilty of this.

Since my illness, many things have changed for me. Brain fog is a big part of that. I am afraid to say things in public because I misuse words or can’t even think about what someone is saying and I stare at them. Recently, I’ve begun to find that using a wheel chair in certain situations has been a huge relief on my ability to get around. Not only does it help me get to places my headache would keep me from going to but it helps save my energy. If I spend a planned day out going to the doctors office I have to rest the whole day before to garner my energy. If I want to take a small trip to target my head will eventually hurt so bad I’d have to lay down in the store.

I’m having Easter with my nephew and his family and I wanted to fill some eggs. My son drove me to target and helped me in the door. I started off by leaning heavily on a cart. We made it to the back of the store (because that is how they get you… go through everything to get to the seasonal stuff – Thanks a lot Target.) We spent a few moments trying to look down the aisles but there were so many people I couldn’t lean on a cart and look around. After walking around and around trying to be at a point where I could see the eggs, it hit me. I had to stop and when I have to stop it is because I’ve pushed myself to the brink and my body fights back. I push it so far because I don’t want to give in but in the end it pushed back. Sweat began pouring, the pain in my head got worse and all of the sudden brain fog was keeping my mind from even being able to count the things we needed. I had to sit and I had to sit now! Luckily we were by a table and chairs set up. While I sat down my son went to the front of the store to get the wheelchair. You know the kind… “beep beep beep” I was mortified, but I hopped right on. He made me feel good as I tried to go around corners and hit things and laughed with me when I wanted to cry about the worlds loudest beeping.

Most people were kind and moved for me and gave me a “giggle along” snicker with me. We finished our shopping puttering through the store and giggling together. I made my comments about looking ridiculous and feeling embarrassed and he spent the whole time saying “Mama, who cares about these people, they don’t matter to us”. He was right We headed to the register. We decided self checkout was the way to go so I could take up less space in lines. On our way to drive the cart back to the station there was a woman who was standing where I needed to park. I said “excuse me” and she looked at me like I was in her way. My son said “use the horn mom” and we laughed. She heard us giggling about it and she moved out of the way with a bit of disgust. He took me home and helped me in the house. He carried my packages and was so sweet giving me a big hug and kiss on the forehead before heading out.

I didn’t think to much more about that wheelchair the rest of the afternoon and thought more about the giggling and fun I had with my son. I smiled the rest of the day after that big hug and kiss. My kids are my world. Getting that one little line from my friend yesterday reminded me of this trip. For me that line he sent really hit home. I actually say that line TO HIM all the time. Him telling me this though was a great reminder that friends and family matter. Who you take home at the end of day matters.

People who look down at you DO NOT matter… Thanks Scotty for the reminder!

Things move fast

Uncategorized / By Whirlybrain

Things move too fast..

I can remember when I was young.. maybe 10, time moved so slow. I’m not sure at what point I finally realized that it now moves too fast. I have memories of thinking just that throughout my life. When the kids were small and again when the kids were growing older. Now at 55, I’m almost overwhelmed with it. I know it’s a part of life and there are so many times we can’t wait for this to pass or that to happen but right now I do wish there was a reset button.

So many people say they wouldn’t want to go back and relive certain parts of their life but I would. I want to go back and relive it all just to learn more about it and from it. You know when you go to a movie you liked you go home happy and always say in your mind how great it was? Then then two years later you only remember the plot? Suddenly it comes on TV and you watch it again and see things you didn’t realize happened the first time you saw it. Reliving life sounds like such a joy, like watching that movie you loved so much again.

I am the kind of person that realizes that you go through good times and bad to get where you are. You shouldn’t regret the bad times if they got you to the place you are. I am very lucky that I am elated with where I am. Of course everyone wishes that something could be different. I wish I weren’t sick. I wish I could get up and go do things whenever I want but as my life is right now I’m happy to be blessed with what and who I share my life with. Now I want it to slow it down so I can watch it closer, deeper and with the awe that life gives us. Things in life just move too fast.

Where have you been?

Uncategorized / By Whirlybrain

Where have you been?

August 2022. Six months ago seems like a lifetime. Where have I been? I am looking back at how long it has been since I made a post and am not quite sure where I have been. I’m trying to look back at what has happened to not only my content, but my energy. Last August, I was in a place I was content with. I was living my life maintaining where my disability had placed me. I was choosing joy and refusing to let pain, loss or change push me off my path. I was enjoying friendships though they were mostly virtual and preparing my youngest to head off to college.

That is where I was, but I just realized I have no idea where I’ve been. As I think about it right now though I’m having trouble remembering the last five years let alone the last six months. It’s pretty normal to have to stop and think about what you did yesterday or even last week. I’ve talked about my issues with brain fog and cognitive issues frequently in the past. I’ve reported to my neurologist that I felt my cognitive issues have increased with each of my yearly appointments. I can actually *feel* how I spoke about each each time with increasing urgency. Today, starting this post I suddenly feel like I should have been more insistent and urgent with my requests. Beth, where HAVE you been?

I quickly think… I don’t have a calendar, I don’t keep a journal. Think damnit, Think… Okay. Just like looking for my lost keys, I backtrack in my brain. What month is this? *looks at computer date* March!! Yes, of course it’s March! I ordered my new LEGO sets that came out. Okay, good. Now *looking around my room* it clicks.. I’m in bed. I had another set of patches for my CSF leak last.. last week? No, not last week think again… February…. February 8th? SHIT SHIT SHIT. Opens iphone calendar.

Thank god I try to keep all of my appointments in my phone calendar. If I think about it, I remember specifically having to start using it instead of a written calendar because I was forgetting to look at my written calendar. Putting things on my phone calendar with alarms was my way to remember things. It was, just like other people, finding a new way of managing something. I specifically remember my therapist saying I am going to have to find new ways of managing changes in life. Yes, I am aging and we all need to manage changes with age.. That is normal. That was five years ago so I should easily be able to go back through my calendar and remember.

I opened my calendar and switched it to year view. I scrolled back to August and immediately see highlighted dates. I was obviously using my calendar and now I can look at things and remember. Now, I can look at things and…. I look at the appointments and realize they mean nothing to me. Tuesday the 15th “Richard at work”, wtf would I put that in for? I realized that it was on every Tuesday in the calendar. Like looking for my keys, I squirrel off and start thinking backwards as to why I have that on my calendar. Right, Richard works from home but on Tuesdays he has to go into work. I put that on the calendar so I can remember not to make appointments on Tuesdays.

I’m laughing at myself because I know this is probably very normal. Very normal for busy people who are trying to keep their daily lives straight. I do not however have a busy life and only have to keep things straight for myself. My main job in life is keeping myself happy, healthy and joyful. My husband is healthy, my children have moved out and I don’t have to report to anyone except my dog. Now I will spend the evening see what has been on my calendar for the last six months. I will think back and use my next coping skill of making bullet points of what I did so I can then try to formulate a map of what it was that I actually did. Beth, where have you been?

Theres not always joy

Uncategorized / By Whirlybrain

There Isn't Always Joy

In the last year or so I’ve talked a lot about joy. Incorporating joy and living a joyous life became my mantra. It’s a very important thing for me. I’ve talked a great deal about how my life has changed with my health. It is a difficult thing to deal with on a daily basis and I refuse to let this shit define me. So, yes I choose joy.

There is never joy in every moment for anyone. I think everyone knows that. I’ve been asked how I can be so happy and joyous all the time. I’m not. I choose to be joyous. Sometimes even for me choosing joy is a minute by minute, hour by hour or day by day thing. Sometimes I don’t want to choose joy. I just want to give in and be sad. I’m human and I do have my times where I just need to cry and vent. I just have to pay attention to where I am allowing my sadness to take me. A good cry is very cathartic. For me it’s a release that will take a lot of weight off me.

There are times where I feel weighed down by choices or lack of choices. I have a tendency to ask “Why?” I am the kind of person since my accident and illness that understanding things is very hard. There are many things I forget or can’t figure out on my own. I find that asking “why” has become my source of input for things that my brain can’t input. It is also a part of my inquisitiveness. I’ve always been a very curious person and love to learn what I can. It gives me a sense of connection.

Those times that there is no obvious “why” for me in a situation is stressful though. If something has pierced into my life that I don’t understand but it’s on the negative spectrum it does weigh on me. Those are the days that I need to complete a re-center. I need to get my balance back in my soul and emotions. My re-centering typically involves releasing fears, hurt or misunderstandings. Knowing my path that I am on is an amazing driving factor to help me while I am on my pause.

One thing I say often is “Five minutes at a time”. I had a physician tell me that once and I’ve held on to that all of my adult life. It is a saying I share at the end of my streams. It’s an important message. A very important message to keep you on the path of your journey. If you are having a moment that has caused you pause, lack of joy or simply sadness, I get it. To myself, I say “Five minutes at a time and you’ve made it five, which gives you five more minutes to continue to work on it.” If I am honoring my pain five minutes at a time it lessens the feeling of “it will never stop.”

There is still a journey for me to stay on the path for joy. Working through that pain or lack of joy knowing I need back on my path does help give me peace. It is difficult but I won’t let my own negativity affect my positivity. So, yes I choose joy.