[rosebower]

...to come on here and seek support. If you recognize my name you might notice that I have a tendency to come here and look for ways I can help or advice I can give. And it pleases me to give as well as I can and I hope it helps, but I'm working through boundary issues with a counselor for panic attacks and an anxiety disorder and ADD that were present before the injury.


She said my "task" for this week was to lean on someone for a change.

SO.. here I am. And the truth is this summer is so hot and so wickedly exhausting that it really makes me scared. I'm hanging on to the hope that the hot weather is just making it harder and it will get better when it's cooler, like before. My PCS has been "relapsed", I guess you could say, since the end of May.


Some days are better than others but every morning in bed starts with something like me and my brain in a silent Western standoff with me thinking "What are you going to do to me today...". Taking a roulette gamble every single morning is starting to drive me a little crazy. I'm SO tired of being brave every morning.


Just getting out of bed is so hard. Trying to be everything everyone who loves me hopes I'll be is even worse. But I just can't bear for my boyfriend who looks and hopes every day for improvement to see me just suffering in some way every day. I try to be steady and fake showing improvement.


Also it seems like my body has the worst time controlling my temp. Even in air conditioning I feel like a greenhouse and I'm getting hot flashes, but in the water for barely 10 minutes I start to get chills and goosebumps when everyone else is fine. Get out of the water and I'm close to heat exhaustion within an hour again. Does anyone else get this?


I'm trying with every ounce of me to arrive at a place where PCS and I are old rivals and I know every twist and turn and I can function in some respect in spite of it all. And to top it all off, I want to get married next May but I honestly don't know if I can tell my boyfriend that despite it being nearly a year and a half after the injury, I might not be all that much better.

I feel like I have a deadline and that worries me.


Also my mother and father have anxiety issues and altho some days Mom is patient and supportive, some days she just needs me to be the strong one and that's so exhausting!! And I know now Dad doesn't get PCS at all and I think he may think I'm just being weird and weak. He keeps telling me I should exercise and get out in the fresh air and take my life back.

[Mark in Idaho]

Concussions can change the way the hormones are regulated. The jarring of the pituitary can cause these hormone imbalances. This can effect thyroid and the common sex hormones plus any of the vast number of hormones that regulate the body.

I find that relaxing in quiet is the best way to get my body's temperature under control. I have lived with temperature roller coaster rides for decades.

[rosebower]

Originally Posted by Mark in Idaho

Concussions can change the way the hormones are regulated. The jarring of the pituitary can cause these hormone imbalances. This can effect thyroid and the common sex hormones plus any of the vast number of hormones that regulate the body..

That's interesting because since the concussion I've been much "friskier?" I'm committed to virginity before marriage and so is my boyfriend but I think it's become way harder for me than it is even for him. Even when I know I'll pay for it by being overheated. I thought it might have something to do with PCS but I wasn't sure.

[rosebower]

Also there is one medication that I've been prescribed and taking, and that's valium, 2 mg per bad day. It was prescribed first by the ER doc and refilled by the neuropsychiatrist I see.


The medication itself scares the heck out of me because I know how addictive it is, but on really bad days with frantic dizziness and blinding headaches it seems to be the only thing that gives me enough of an edge (not always total relief, sometimes just a toe hold) to start compensating and functioning again.


This may be because of the combined anxiety and PCS issues I have. It was prescribed at first for dizziness, then two more refills because of the effect it was having on my other symptoms. And thank God for counseling. The panic attacks seem to be lessening.

[Dolfinwolf]

Originally Posted by rosebower

That's interesting because since the concussion I've been much "friskier?"

That I don't know the answer to! I have the exact OPPOSITE problem. I don't even so much want a hug or a kiss from anyone, (unless its telling the kiddos goodnight). I ended up seeing the end of a relationship because of it (honestly I am better off if he was not willing to be with me at my low, so...meh!)

[Mist8012]

I can totally relate to some of your ailments.

The sex thing? No. Before PCS I was beautiful, always had my hair done, make up on all the time and an over all infectious happy girl.

Now I'm moody, impatient, and also have panic attacks often. I cry a lot!

Hubby has said many times he just wants his wife back but frankly don't know how to make that happen.

His mother says I just need to get out and go lay on the beach...WT?

At least here ppl understand. I try to fake it but it never works.

Take care

[rosebower]

I've understood from reading a lot of people's stories that I have the opposite problem from most, so I'm the one who's the exception. My boyfriend I think has a bit of a hero complex and hooked up with me officially about two months after my injury, so he was well aware of what he was getting.


The reason I try so hard to show improvement even on bad days is that I don't want him to get burned out or lose hope about our future. It feels like the reason I have trouble sex-wise now is because I'm so vulnerable and moody, and my self-control has gone way down.


That is not always a nice thing, I've always been disciplined about myself, or tried to be, but now it feels like I could through a lot of that out the window without a care. That's alarming.

[Dolfinwolf]

Originally Posted by rosebower

And the truth is this summer is so hot and so wickedly exhausting that it really makes me scared. I'm hanging on to the hope that the hot weather is just making it harder and it will get better when it's cooler, like before. My PCS has been "relapsed", I guess you could say, since the end of May.


Also it seems like my body has the worst time controlling my temp. Even in air conditioning I feel like a greenhouse and I'm getting hot flashes, but in the water for barely 10 minutes I start to get chills and goosebumps when everyone else is fine. Get out of the water and I'm close to heat exhaustion within an hour again. Does anyone else get this?

I totally understand what you are going through! I am 7 months post concussion and am going through the same regulatory issues, and it's so hard trying to make other people understand, that NO I cannot sit outside in the heat even though I am doing nothing because I will get SICK.


*sigh* totally there with you on the hot flashes too. I was sitting in a very air conditioned break room the other day, and got so hot that I stood in front of the freezer with the door open. But 10 minutes later I had a sweater on, and couldn't warm up!


I wish I could control it! At least I have a hormone explanation provided by Mark, which will help a bit for doubters that I deal with.


I am sorry you are having to put on a show that you are getting better when you may not be as better as you want to be...(or that your boyfriend wants you to be). I tend to do that for my kids, I don't want them to think their formally active mom is a big wuss, but I am slowly learning that overdoing it is more detrimental than being honest about my true state for the day.


I am glad you are reaching out again; it helps to know you are not alone. (helped me too with the temp thing! This heat/humidity is AWFUL!!)