This is something many individuals go through with chronic medical issues. You ask the question should I leave the house or should I stay home. One is always believing it will be a good day, so you go about the plans for your day. It turns out this is more of a typical day in the life of all the above mentioned individuals. Please laugh along. You may be able to identify these situations with either yourself or a loved one. I welcome any of your personal “laughter moments”!
A while back I was standing in line at Costco. I suddenly felt ill without warning. A relatively common occurrence dealing with autonomic instability, but this time nothing I did helped. I just needed to get out of the store quickly.
If you tell anyone you are ill, they’ll call an ambulance! So you can’t ask for help if you want to stay away from emergency rooms. The lines were long. The only way I felt I could get out quickly was through the self-scanning lane. I never did it before. I also needed my cart to lean on. So no matter what way you look at it my cart had to be empty.
I started scanning my items. The light or sound kept beeping. I couldn’t figure it out. I just decided it was scanning my items and I threw my items after each scan to the bottom of the belt in this check-out lane. After visibly upset I finally realized that the beeping sound meant it didn’t scan my items. At least I figured it out!
I bet they already called security and the local police to arrest me! I re-scanned the items and I was out of there. I was feeling hot, so in the parking lot I was taking off my shoes and socks. I knew this would help cool the body off.
Now they probably thought they had another reason to have the security and police arrest me. I think about all the cameras in these places and wonder how many TBI survivors or anyone dealing with chronic medical issues they catch on these cameras and think they are criminals? Too many innocent TBI survivors are already in jail for doing things they are not aware of. Instead they label them as “criminals”.
I stopped at Costco to get gas and pick up a couple items. It just wasn’t my day. They didn’t have gas at this Costco. Oh…how difficult when you’re trying to accomplish things and everything turns to crap.
From Costco, I continued on to my appointment for oxygen hyperbariac therapy and needed to stop at McDonald’s for an ice-cold soda. I was so hot! Now, wouldn’t you know all the school children got out of school early and happened to be at this McDonald’s! Yuk…so much noise, but I was extremely thirsty! Besides I’m frugal and that $1.00 unlimited ice tea/soda was just what I needed!
McDonalds (Photo credit: Sean MacEntee)
If anything would have happened no one would have believed I went to McDonald’s on my own free will! Was I being held hostage? I rarely drink soda and go to fast food places. I made it to my appointment but I wanted to cancel…I didn’t feel well enough. I know this is a day in the life of anyone with TBI and chronic medical issues.
The next day I decided I should take my temperature. I never put all the symptoms together, but when I couldn’t get out of bed I knew something was wrong. Yep, 106 degrees! I knew I was feeling bad…and really bad! On these bad days, it’s hard to tell if it’s the usual bad days or unusual bad days. There’s a very fine line between the usual and unusual bad days! At least for me.
I was taken to the hospital in an ambulance, but left off in the waiting room even though they knew my fever was over 106. I wonder if it ever occurred to them that I could have something contagious! I didn’t think I’d be able to sit there very long and asked called my son to pick me up.
Blood infection gram positive Cocci and hospitalized. It wasn’t the blood infection or sepsis that scared me…it was the hospitalization! I started feeling better quickly, and better than I ever did in nearly 18 years! It seemed like another miracle. That was short lived!
It was explained that since I was receiving intravenous steriods for the adrenal insufficiency I would feel as though my body was making and regulating adrenal hormones, which was before injury and is normal in nearly everyone. The levels were constant receiving adrenal steroids by intravenous. When the IV steriods were discontinued I became weak as I was prior to this acute illness. It was short lived but at least I know the diagnosis is correct. What a way to prove a diagnosis!
So did I rationalize the usual bad days versus the very bad days! Someone with TBI can’t really tell the difference. At least I couldn’t. Most of us can’t even get out the door on a bad day…but this is what it’s like when we are out and things change quickly. It’s always unpredictable!
At least I wasn’t arrested and I probably kept the security cameras rolling with some interesting comments. For all I know they have been waiting for me to return, but I haven’t returned to that Costco yet. Maybe next week, and this time I’ll smile for the cameras!
So if you hear a beeping at the scanner don’t throw the groceries to the end of the check-out lane and assume it’s scanning. It’s also not a good idea to get undressed in the parking lot!… but you have to do what you have to do to get by.
This is just one reason people dealing with chronic medical issues stay home. Is is worth all this? The noise and frustration level can get the best of those with TBI. Be prepared if you go shopping with anyone with medical issues either help them, or you may also be arrested!
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Three Well Beings
June 20, 2012 at 1:58 am
What a harrowing experience in Costco! The self check-out system can be frustrating for anyone at times, so I’m really quite impressed you got through it considering how you felt and having no previous experience! 106? That’s a really scary temp! I do think it’s nothing short of strong tenacity that would get you out to do anything. It sounds so exhausting! Bless you! Debra
brain injury self rehabilitation (BISR)
June 20, 2012 at 2:06 pm
I think when one minimizes health issues things look much better then they are. Here is a not so nice answer when I reply to feeling ‘FINE”. FINE does not mean or equal okay, but it’s the expected answer in our society. FINE stands for = F..ked Up, Insecure, Neurotic, and Emotionally Unstable! Maybe, expectations of others would be avoided if they had this definition! Actually, most people asking how you are doing really don’t care anyway! I’m not sure who told me that one…but it’s worth a good laugh! Take care and stay safe, Edie
yeltnuh
June 20, 2012 at 11:01 am
I’ve just come through a week of this (screaming on the inside). 🙂
brain injury self rehabilitation (BISR)
June 20, 2012 at 1:37 pm
Are you doing okay now? It’s so hard, and I don’t think people understand!
I became ill once in a mall, went to lay down for a second when security told me I needed to leave or they would call 9-1-1. I slept in my van for the next several hours before I could get home. Who knows when things are so unpredictable? What makes matters worse, we are spending so much excess time correcting everyone else’s errors: incorrect bills, insurance company issues, paperwork galore, etc. That’s a full-time job!
People don’t realize that if you don’t sleep, you don’t function at all! It’s not like going to work and just didn’t sleep last night. NO…if you don’t sleep well, your body will NOT work AT ALL! REST AND SLEEP ARE VITAL to just living when you have chronic health issues.
yeltnuh
June 20, 2012 at 1:40 pm
No, I probably won’t get ‘better,’ but I’m learning some great skills.
brain injury self rehabilitation (BISR)
June 20, 2012 at 1:59 pm
It’s amazing how one needs to compensate when they don’t improve! Bless you, Edie
heidirmoore
June 20, 2012 at 11:09 am
This deserves a TRIPLE OMG, Edie. Half laughing, half crying here. My goodness, now. THAT’s what I call a day! I’m so happy you’re okay, first of all.
Now, did you already know about the Addison’s Disease? I wasn’t sure. Infections are so difficult with cortisol insufficiency. Hell, we’re half dead half the time anyway (does that make us 1/4 dead all the time?).
I’m really sorry to hear you missed the signs of your illness. The culprit, I think, was going to Costco. That place, I have learned, is not for me. Maybe send hubby with a list next time and (quietly) do something nice for him?
Best,
Heidi
brain injury self rehabilitation (BISR)
June 20, 2012 at 1:46 pm
I honestly did not realize how severe adrenal insufficiency is, and I minimize everything. I’m sure that’s why I’m in the situation I am … but minimizing is something I’ve done my entire life! I’ve tried to change, but it’s so deeply engrained. However, I will get treated immediately in the future for adrenal insufficiency … it’s amazing any of us are alive! I wonder how I managed for so many years before proper diagnosis and treatment. I do take cortisol twice daily and it’s been sooooo helpful! I like your 1/4 dead all the time!
We’re still here, and trying to help others along this difficult path. So we’re doing something with the 3/4 living being! It’s amazing how many healthcare professionals (including myself before diagnosis) don’t understand all these different diagnosis and the degree of severity it has on one, especially when they become acutely ill.
wendy
June 21, 2012 at 12:49 pm
I never go out alone. I can’t. The vertigo could hit at any moment, I wouldn’t want to be behind the wheel of a car at times like that. As hard as shopping often is, it’s so much easier with someone with me, especially my husband. I keep an emergency kit with me (cold pack, the kind you have to hit to activate, a towel, wash cloths, bags to throw up in, extra meds…and a card to explain what is wrong with me.) This emergency kit has helped me feel better, I don’t feel so helpless.
I’m often worried when I have GI issues and just brush them off as gluten or fructose problems that I may be really sick, and I’m not paying attention to the clues. I’ve done that before, I was sick to my stomach and running to the bathroom….I wondered what I had eaten that I shouldn’t have. The next day, I was running a fever (not as high as yours), I had a virus. Who knows how many people I exposed this to, since I just thought it was one of my instances.
Every morning I wake up with vertigo, usually not bad and it subsides fairly quickly but every morning, most mornings I wake with a migraine, and I always wake with double vision, or seeing gray spots. (like little spots of ghosts) This is most of my symptoms of my intercranial hypertension. I’m so happy it hasn’t gotten worse….but I know it could.
as always a good message, we need to pay attention to our symptoms, even if they feel like the normal symptoms we have, we need to really pay attention and notice if it may be more.
brain injury self rehabilitation (BISR)
June 22, 2012 at 5:28 pm
I love your suggestions. It’s always a good idea to keep an emergency kit in the vehicle that has supplies to support your specific situation. You have added some things that are helpful. You are right, never to drive when you have symptoms. Safety is always key. I won’t say I practice it, as much as I preach it…but I try hard. I’ve learned never to ask for help as a very young child, as this is so hard to change. I’m changing slowly, but it’s happening.
wendy
June 23, 2012 at 1:35 pm
I too had a very hard time not being very independent, I was for so long. I had to go into therapy to help me give up some of that control and allow someone to help me. And learn to ask for help. and realize it doesn’t take anything away from me.
My husband and I still see this therapist, she has helped us a lot in dealing with this big change in our lives…and the continual changes.
stay safe
wendy
Maria Tatham
June 21, 2012 at 3:13 pm
Edie, self-check out is challenging for lots of people, I bet. A machine tells you what to do, then scolds you if you don’t get it right. If you forget to set something down after it’s scanned, the machine commands you to do this and won’t continue until you do. Yikes!
I’m sorry you were so ill. One can laugh, but still…106 degrees? That’s dangerously high – I realize you know this, especially as a nurse.
By the way – all of you – I think it’s great that you are so good at using math in conversation/joking! That’s an accomplishment!
Bless you – all of you!
Maria
brain injury self rehabilitation (BISR)
June 22, 2012 at 5:22 pm
Maria, We always love hearing from you! I guess maybe if I pay attention to the commands on self-check-out that would be helpful. I’ve tried it since then and I’ve accomplished the task, but it wasn’t easy. I’ll only do it rarely now! (maybe 3 times!) One needs to really pay attention, and follow directions! Not as easy as it sounds especially with so many distractions!lol I really like your comment on using our math…without that, I could just say “more alive then dead”!….either way, we aren’t doing too bad with math and you noticed…isn’t that great? Take care and stay safe, Edie
Maria Tatham
June 22, 2012 at 5:59 pm
Thanks for saying this, Edie! Yes, you’re right we must pay attention. I’m trying to pay better attention too! :0)
Yes, it IS great about your math in conversations! Because you deal with TBI, I noticed this as something positive.
Take care and stay safe too!
Maria