Let’s Get Real About Brain Fog

Let’s Get Real About Brain Fog

Brain fog: Clouding of consciousness, also known as brain fog or mental fog, is a term used in medicine denoting an abnormality in the regulation of the overall level of consciousness that is mild and less severe than a delirium. The sufferer experiences a subjective sensation of mental clouding described as feeling “foggy”.

Thanks Google and Wikipedia… one of my points being proven right here. I couldn’t come up with the words to define brain fog in a coherent way. Now that may just seem like a normal thing but it goes deeper than that. 

Just now I had to exit my blog. Switch over to google and sit there for a few seconds and try to remember why I was staring at a google search bar. 

It is so incredibly frustrating. 

It takes every ounce of me to semi exist in a social setting. Never mind when I am on medications that make this fog worse. 

I resort to being on my phone most of the time. It’s easier than having to try to keep up with a conversation that most of the time I get lost in anyway. 

I was at lunch with one of my really good friends and Russell. My oldest “brother” and Russell get along really well. Both of my brothers do actually. The oldest, M, happened to be in town and we met for lunch. I always look forward to these lunches because I hardly see M and being chronically ill makes it difficult to go see him on my own. I have to depend on other people’s schedules. 

So Russell, M, and I are sitting together eating lunch. I began to feel really left out but didn’t say anything because I love that M and Russell get along so well and have so much in common. 

I am beginning to see that other people are not the problem. They are not the reason I feel left out. I am. 

I’ll let that sink in… mostly because it really hit me hard. 

My brain can’t keep up. It’s tiring. That’s why I’m absent. The more I see it (when I can actually think straight) I know that I am probably the worst person to have a social lunch with. 

If it is really important. Like a friend wanting to vent or get advice I usually can focus but if I can’t then I tell them. 

I try to be honest but I know now why social activities are just as difficult as the physical ones. 

This breaks my heart. I feel like there is one more thing that has been taken away. 

It just seems never ending. I have tears in my eyes as I write this post. The posts that are the most difficult for me emotionally are the easiest to write. I don’t lose track of what I am trying to say most of the time. 

I hate how the brain plays tricks on you. 

Brain Fog. I have to write everything down. Then I have to remember to check it. 

I used to forget if I had taken my meds.  So sometimes I wouldn’t get them or I would get them more than once. 

I have a system in place now but brain fog is no joke. I am 24 and have a crappy memory and I can’t focus for very long. I do puzzles and crochet and keep my mind active but it doesn’t seeem to make that big of a difference. 

So next time I see you or if it’s the first time we meet and I seeem distant or disinterested that most likely isn’t the case. 

Please try to be understanding. I know it’s my fault. I am trying.  

Until next time…

Trying To Be A Good Patient

Trying To Be A Good Patient

Oh my! 

I have more than 4 weeks left for antibiotics and being in a cast. 

When you know your body and are in tune with your entire existence being a good patient is hard. It’s harder when you live in doctors’ offices and you practically have your MD via osmosis. 

I have my opinions but I know my body. I know I cannot tolerate antibiotics orally. Which is a pain. I know that there are two  types of narcotic pain medication that works for me. 

I wish you (the doctors and nurses and other healthcare professionals) would just listen to me! 

I understand they go to school for a long time and work very hard to get where they are but the patient may actually know what they are talking about. So hear them out. 

The doctor that did the surgery to clean out the staph infection from my ankle wants me in a cast for 6 weeks in hopes to build up enough scar tissue in my ankle to avoid another surgery to replace the ligament. 

Here’s my problem with this. I know the ankle stability is there for the most part. That’s great! I know that is the goal with this whole casting process. Now, the whole reason I went to my podiatrist is because I was in pain. The previous ankle surgeries didn’t help. It failed. There were hopes of building scar tissue there as well. It failed!!

When I had the surgery to replace my ligament the pain was gone. It was awesome. I know for a fact I will be going back to my podiatrist and having the surgery redone. 

Listen to your patient. It makes it easier for them to comply with your treatment plan. Take into account what they are saying. 

It drives me crazy when I get a doctor with a surgeon’s complex. 

They know it all. They are in and out. We have to advocate for ourselves but what good is that when the healthcare professionals have the words of the patient, who knows their body better than anyone else, go through one ear and out the other. Or it just doesn’t even register. 

I will comply with the 6 weeks in a cast and the antibiotics. I feel that the casting process is fruitless but we shall see. 

When you are a Spoonie being a good patient is so difficult sometimes. You know too many different solutions for problems and they are safe to do and you suggest them to a healthcare professional and you get blown off. 

Are we encroaching on their territory? 

My podiatrist understands that there is one pain medication that I can get from the pharmacy that works. 

This other doctor “couldn’t prescribe that” but he could give me something else that causes my to double over in pain (which isn’t that the opposite of the entire point of pain medications) so I went to my podiatrist and asked them if I could pretty please get a refill. 

He thinks being in pain is silly and unnecessary. I happen to agree. 

Until next time… 

Gallery

How Chronic Illness Changes You Over Time


Okay, so you may be wondering why I have posted this gallery of photos. I was looking through my pictures and they are so different. You would expect that because as time goes on you get older and your tastes, likes, dislikes, whether you wear makeup or not, if you decide on glasses or contacts…. We change.

I noticed something else though when I was going through these pictures. The very first one was taken either my junior or senior year in high school. I am leaning more towards my junior year but I am not going to look at the metadata… that’s not the point I am making. I was probably about 17 in this photo. I have always been tiny and thin. Always.

As we go through these pictures I encourage you to look at my face in particular. Maybe even more of a focus at my eyes.

At 17 I was invincible. Weren’t we all? I was not “sick”. I had not been diagnosed with anything other than being underweight. Nothing was really holding me back from doing the things I loved.

My next picture I had recently been diagnosed with Bi Polar Disorder and Gastroparesis. I know I am hiding behind sunglasses and a target but from what you can see I am really thin. Somewhat hunched over (my body hurt all the time much like it does now) and that is when I noticed things changing. Not only my whole body but my eyes in particular.

The following photos are all post diagnosis. When I look at my eyes in pictures now I see exhaustion and a look that says I really just want to go lay in bed.

It is amazing what you can see on someone’s face by their expression. I am truly happy in all of these pictures but I am so tired. I can just see on my face the fun I am having but how hard I am working to make it seem like I am there. Like really there.

I think there is always part of me that is somewhat absent these days. Being a spoonie is not easy and it shows in pictures. I didn’t really notice it until recently but I bet I could do that first photo again… It would not be the same. I am older of course but that light that screams energy and a carefree attitude would not be there. It seems like I am looking through the camera lens… like there is no life in my eyes. Maybe that’s something I could change but I think that it just comes with it… with being sick… with my body having to work so hard just to be…

I wonder if my fellow spoonies have noticed this too? That pictures before we got sick had a different light to them.

I will continue to take selfies and what not but I know they are so different now. I think I am okay with that.

All part of finding my new normal… yeah?

 

Until next time….

 

 

Oh How I Love To Sleep!

Oh How I Love To Sleep!

Okay y’all we are going to talk about sleep. 

You may be thinking to yourself why am I reading about sleep and what about sleep? 

Well I am a HUGE fan of sleep. I think I could be a professional in napping. Seriously guys I love my sleep. 

I always have even before I got sick. I have always been the type to need like 9-10 hours of sleep to be a pleasesnt person. 

Now I feel like I could sleep a good 16 hours a day and be good. The problem with that is I get nothing done! Nothing! 

So in a world of go, go, go I have to find a way to slow down and prioritize what needs to be done that day and what can be done tomorrow. 

I nap. I nap a lot. In the car (if I am not driving. Safety first y’all). In the waiting room. Waiting on the doctor in the exam room. And wherever I can catch a snooze. 

This is how I can function day in and day out. Sleep. 

I run into the problem of not being able to sleep because I am too nauseous or something is aching or something else going on with my digestive system. At this point I am useless. I am laying in bed binge watching Netflix because I don’t get the sleep I need. I fall asleep here and there through out the day and I get nothing accomplished. Other than maybe finishing season 2 of Gossip Girl. Haha. 

It is crazy how much sleep rules our lives normally but when you have a chronic illness… sleep seems to be the greatest treasure you have ever found. The greatest experience. 

I won’t speak entirely for the Spoonie community but I think we all feel that we will never feel rested. No matter how much we sleep. 

People have said “Well you need to get out more and be active. Get a routine going and that will help too.”

My answer to that is this: I can be active but I pay for it in the coming days. My life is nothing but a routine. When to take medicines. When to set up my feed and when that ends. Cleaning the extension lines. Doctors appointments. 

There is only so much one can do when they are chronically ill to help the need for sleep. 

Sometimes we just need to sleep. Period. That is how we take care of ourselves. Just like taking a pill or supplement. Just like if we went a holistic/homeopathic route to treat something. Sleep is part of that. 

Yes, sometimes I need to get my butt up and get going but there is a delicate balance when you have a chronic illness. 

Until next time….

When Things Don’t Go Your Way

When Things Don’t Go Your Way

Goodness gracious y’all…

I know it has been awhile since I have written and let me tell you it has been hard to want to.

This past Monday I was headed in for surgery to get a couple of things on my left foot all fixed up. 48 hours prior my ankle that I had the ligament replacement on really began to hurt. It got all bruised (see my post called A 55 Pound Dog) and was really painful. I thought it was just because of the dogs jumping on my ankle.

It continued to get worse over the weekend but I decided I would have my doctor take a look once I got to the surgery center Monday morning. I couldn’t walk on it and that really should have been a hint to go to the ER Sunday night.

I was put under general anesthesia and he found an infection so he told my parents to take me to the ER for IV antibiotics and see what was going on. They took a bunch of blood and all of that jazz.

I was admitted to the hospital not long after that. That night at 11pm I was taken into surgery for them to clean out the infection. They applied a wound vac and left it open for 24 hours to drain.

GROSS! Am I right?! The next day really early in the morning they scheduled another surgery and in I go… Clean out number two…

Turns out I have a Staph infection that thankfully did not make it’s way into the bones but filled my ankle and foot joint and was eating away at the material that replaced my ligament. Turns out that it made it into my bloodstream as well… That material was removed and after lots of waiting for cultures to come back I was discharged.

I have a PICC line for antibiotics which I get infusions of daily for the next 6 weeks.

The doctor wants my ankle completely immobilized for the next 6 weeks in hopes that my body will build enough scar tissue to create it’s own ligament.

This is not what I planned. I am bummed and bored and kind of in pain… in more ways than a pain pill can fix…

I thought 4 weeks recovery for the other procedure was doable. This is a whole new ballpark. This is not something I am familiar with. Not something I know how to deal with. It just is…

Until next time….

 

A 55 Pound Dog 

A 55 Pound Dog 

So as you know readers I recently had surgery on my ankle. I had to have a ligament replaced. 

I was finally walking normally and yesterday that changed. I now cannot bear weight on my foot and it is very painful. 

I am back in my splint and taking pain medication to make it bearable. 

You see my mom has this very sweet and loving German Shepherd/Golden Retriever mix. I love my JoJo even though she is my mom’s. Haha. 

JoJo and my dog-child Bentley were playing as I was laying in bed with my mom watching tv when the dogs jumped up on the bed. 

I had the full force of both dogs ram into and on top of my ankle. 

It is bruised and angry but yesterday my foot decided to respond by cramping up for hours. Couldn’t even touch it without me screaming. Hat cramping worked its way up my leg.  I cannot tell you how much fun that was (sarcasm by the way).

I took pain meds and was zonked for the rest of the night. 

Russell and I were supposed to go out on our yearly tradition but that didn’t happen. 

I wanted to go out today but that didn’t happen. 

I wanted to go to church tomorrow and a fellowship event. Not going to happen. 

Surgery number two happens Monday. I will explain that in another post. 

Until next time…

New Friends

New Friends

As many of us Spoonies know friends tend to drop off the radar. We have to cancel or bail all the time and that makes makimg friends and keeping them very difficult. 

Our lives are just not the same. Russell and I joined a small group and last night was our first gathering. 

I just know that making friends is hard. Even if you are perfectly healthy. 

The group of us got along great but as always time will tell but friends! 

It’s the little things. Getting plugged in at church is one of those. 

Have an amazing day! 

Until next time y’all! 

When Your Disease Makes You Feel Like An Old Lady

When Your Disease Makes You Feel Like An Old Lady

Last night I went out with one of my best friends and went dancing.

IT WAS A BLAST!!

I was getting ready to go out at 10:30pm… and I was thinking to myself… I haven’t done this in years…. 

I left the house with crazy excitement! I was going to be “normal”!! I was going to be the party me!! Like back before my life got thrown into a different direction.

As the night went on and after a lot of dancing I was looking around and I thought to myself how do all of these people have so much energy?!

Seriously though, how?! I sat there with my heart racing and trying to catch my breath…watching….

Once again I was a spectator. Someone on the sidelines. I felt old.

I was definitely older than the people we were talking to. My body felt old. I felt maybe 30-40 years older… I’m 24. I went out to have a great night (and it was) but when I got home I wanted to crawl up into a ball and give in to the pain I was feeling.

My ankle was killing me. (Quick tidbit: don’t dance like crazy on an ankle that you had surgery on 2 months ago…) My back was screaming… Every part of my wanted to lay out flat and give up….

I didn’t. I continued to dance. If I was going to be miserable it was going to be for a good reason by golly!

I came home. I told Russell about my night and then crawled into bed. I just wanted to stop feeling every muscle, tendon, bone, ligament, and whatever other connective tissues that exist in my body….

I couldn’t believe how tired I was and how much pain I was feeling… I just wanted it to stop. I was feeling pretty miserable. I took half a pain tablet just to make it stop hurting. I am still hurting today… I am exhausted but I would do it again in a heartbeat!

I would not trade that experience for the world! I will probably plan it out a little better but I would do it again!

I feel like an old woman when it comes to being active and having fun. When it comes to camping or rock climbing or dancing like I used to…. I feel like I am 30-40 years older than I am…

Until next time…

What To Do

What To Do

Honestly guys, 

I am in a mega rut. I don’t know what to write. Not sure what to do with myself. 

I am working on this crochet teddy bear but I can only do so much of that. 

I was working on learning how to code but I’m not sure how well that is going. 

I started reading a book, which I am still working on, but I—

I’m making excuses. I just don’t feel accomplished in anything. 

Spinning in the same circle. Day after day. 

I can’t stand this. 

I am waiting on this disability thing and I just am spinning my wheels. 

So…. sorry for the shortage in blog posts. I don’t know what I’ll be doing next but I hope I can still write things that reach out to someone. 

P.S. Sorry if this is rude y’all… I really don’t want suggestions and ideas of what to do… I am just sharing my story. 

Until next time… 

More Medications

More Medications

I had another cardiology appointment today and I received yet another prescription. Now, before you go all homeopathic suggestions or yay drugs or boo drugs you must know that I actually tried the all natural way of doing things first per my doctor’s instructions.

He understood my Gastroparesis and various other diagnoses and took into account what I had already been taking.

I tried by keeping my electrolytes and such more balanced. It started to make a small difference but my heart rate was still consistently in the 98-112 range when I was just resting. In case you are not sure of what a “normal” heart rate should be at resting is around 82-85 I believe. Please double check the facts. IN NO WAY AM I A DOCTOR OR HEALTHCARE PROFESSIONAL.

So now we need to resort to medication. He put me on an extremely low dose for only a few times a week. We will see how this goes.

I  really don’t have much going on. Knock on wood. I have been extremely tired because my heart has been working so hard.

Until next time…