Brain Injury Support Group
Traumatic brain injury occurs when a sudden trauma causes brain damage. TBI can result from a closed head injury or a penetrating head injury. Symptoms of a TBI can be mild, moderate, or severe, depending on the extent of the damage to the brain. Outcome can be anything from complete recovery to permanent disability or death. A coma can also affect a child's brain.
I have two different things I wanted to get feedback on and figured it would be easier to just write one post.
The first thing is that I'm really tired of the physical pain and how slow it is taking to heal the physical aspects of my injury. And, I know, if I look back, that, yes, I have made a lot of progress since I was first injured.
But...a lot of times I just feel like it's not going to get any better and that I'm stuck with certain aspects involving physical limitations and pain.
But, I feel like a bit of a hypocrite for feeling like that. Because, how many times have I encouraged others that things can get better?
Sigh...but it's hard when you're looking in your own mirror, know what I mean?
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The second thing is that I had something weird happen this past week. Basically, I had some brain symptoms come on out of the blue, that I haven't had to deal with for a long time. It may have been brought on by a physical thing or it might have been brought on by some fun excitement I had this week. I don't know.
All I know is that on Friday I ended up "spacing out" while at a gas station. All of you who are BI survivors and caregivers know what I mean. I literally was "gone". Fortunately, the gas attendant was very nice (although he probably did think there was something wrong with me. And, well that's true, isn't it?) I also had dizzy spells and confusion.
Actually got kind of worried but it seems to have gone away by today. Anyway, has anyone had prior symptoms come back out of the blue? I would say I hadn't had these things happen since 2011, so it's been quite awhile.
It kind of struck me as "Oh, yeah, Elanie, you really DO have a brain injury."
The first thing is that I'm really tired of the physical pain and how slow it is taking to heal the physical aspects of my injury. And, I know, if I look back, that, yes, I have made a lot of progress since I was first injured.
But...a lot of times I just feel like it's not going to get any better and that I'm stuck with certain aspects involving physical limitations and pain.
But, I feel like a bit of a hypocrite for feeling like that. Because, how many times have I encouraged others that things can get better?
Sigh...but it's hard when you're looking in your own mirror, know what I mean?
------
The second thing is that I had something weird happen this past week. Basically, I had some brain symptoms come on out of the blue, that I haven't had to deal with for a long time. It may have been brought on by a physical thing or it might have been brought on by some fun excitement I had this week. I don't know.
All I know is that on Friday I ended up "spacing out" while at a gas station. All of you who are BI survivors and caregivers know what I mean. I literally was "gone". Fortunately, the gas attendant was very nice (although he probably did think there was something wrong with me. And, well that's true, isn't it?) I also had dizzy spells and confusion.
Actually got kind of worried but it seems to have gone away by today. Anyway, has anyone had prior symptoms come back out of the blue? I would say I hadn't had these things happen since 2011, so it's been quite awhile.
It kind of struck me as "Oh, yeah, Elanie, you really DO have a brain injury."
I seem to find it happing more and more, these moments of confusion or feeling just not with it. Ok not that often but every now and again and thats more than enough.
Sometimes I wonder am I just more aware of it now and maybe its a good thing and a sign of my improvement that I can now see what I can be like but I don't know. Its not nice and makes me feel a bit stupid bu like you said there is something wrong.
As much as I appear normal when these things happen its like a knock saying you are not really up to it yet. it is frustrating but I try not to let it slow me down or hold me back.
I just keep going and yeah I may seem silly at times or not with it, well I just try to laugh at these times.
I cringe on the inside.
I wonder what people are thinking and sometimes wish someone would talk to me about it. I feel like its like a big elephant in the room that nobody wants to talk about but then again do I want people to mention it, maybe they just politely ignore it.
i don't really know what I want other than tto be completely normal again but thats not going to happen so have to just get on with it as well as I can I guess.
With regards to the pain you are feeling Elaine, never feel that you have to hide it away or pretend its not happening.
It must be so hard for you to constantly deal with. i can't say much more about as I am lucky not to be dealing with any pain but just do what you can to get on with life. I know it must be hard and so frustrating. I'm sorry for the pain you are dealing with and wish they could do something for it.
I so wish I could take your pain for even just one day so that you could live pain free at least for a little while!! I know I've said it before but I'd take it still. I've been very lucky in that department. I have occasional headaches but that is due to spine alignment. The other pain is from the arthritis the broken bones...very manageable even on the worst days. Perhaps you needed to vent your frustration with it. Just because you encourage everyone else to give it time we all go through periods of time when it just seems more than we can bare. Hugs...I continue to pray for your relief!
As far as the "spacing out" Yes, it has happened to me too. Although rather unexpected after I get a hold of myself I can usually find the cause.
Over did...over excitement all the things you pointed out may have contributed to it have in fact affected me at these times. I also found out the dizziness was due to allergies (I didn't know I had) confusion right along side...too much pressure from the allergies in my head.
Another thing I found was not helping me...not enough fluids. When I get out and about and especially if I'm doing something active I tend to forget to drink enough water.
I so understand the realization of having to continue to admit we have brain injuries. I can't tell you how many times I hear....Oh...I forgot about your injuries or, I forgot to do whatever. The very things I was judged on for my own well being...
I can't say I want them to remember in reality. I've always wanted them to treat me...like they want to be treated and on that note yes...I sometimes forget myself. I think that's because I decided while still in the hospital...I'm not going to let this beat me. I will win...I will recover fully someday!!
I've seen that very support from you with all you reach out to; and the same determination for yourself. It's okay...we'll all get there if we never give up trying.
Please just cut yourself a break girl. You are healing and will be healing for a long time, little by little. I get these periods too where something will just come out of nowhere....I guess it is our reality. I have learned to laugh at myself...It is my way of coping. If the people around me cannot deal with it, then they can just go elsewhere and not deal. This is me, my life. I can't help it. End of story.
I am sorry that the pain is so bad. I practice biofeedback as a way to help get through mine. I detest pain medication. One thing...I found out I have fibromyalgia now as a byproduct of my car wreck. My nerves have been on high alert for so long from all of my injuries that they now only know high pain, there is no feeling of lessor pain levels. You should look into this and see if the symptoms match yours at all....not that I wish a new affliction on you but I found it helpful to have an answer. I now take Lyrica and helps with this daily overall body pain.
Actually, Sporty, I am dealing with allergies this week. I've always had very severe allergies but managed them well pre-TBI. That actually could have triggered the brain problems this week. Or in combo with doing just a little more.
It was just a little scary to have the more serious side effects come out of the blue. To be at a gas station, confused, not knowing where I was, etc. I haven't had something like that in a long time.
Here's what I do when it happens to me. I find a place to sit close my eyes and relax. Usually helps it pass faster than if I try to fight it. Fighting it always makes it longer...takes a day or two to recoup.
I'm sure it would be a bit harder if someone saw it happening.
A little bump in the road to keep us ever watchful.
I have wondered how I came across to other people when I was confused etc. And having this happen again, my conclusion is that I think I just come across as ditzy or something, because people are generally nice and helpful towards me. I guess I don't really know what they think but at least they're not yelling at me!
As far as pain goes, I had several epidural steroid injections into my spinal fluid, it really helped me overall. I did not care for the bloating :)
Anytime my symptoms of brain injury pop up I get to thinking how far back since I did that. I find that the 'spacing out' is getting further apart and less noticeable. I use it as a reminder that I am getting better.