[EsthersDoll]

So, I went to my parents house on Saturday to celebrate my birthday. My stepmom is "in charge" and we arrived past the time that I eat lunch because their house is an hour and a half away from mine. I needed to eat and no one told me when I was going to get to... I had several snacks though.

I was "told" that I was going to conduct a scavenger hunt with my 10 year old nephew and my 5 year old niece. I didn't want to. I was tired and I didn't feel like it. My boyfriend understood my reluctance but he didn't communicate it for me. When I asked him why later he said it's not his responsibility. I didn't think it was, I just wanted him to help me to communicate what I was unable to. he usually helps me and reminds me to pace myself. I didn't even realize that I could say "no, that's not good for me, I can't do that". And to be put on the spot like that with my niece and nephew was doubly disappointing. I felt very obligated to try. Half way through it I totally broke down. It was just too much for me. I abandoned everyone and went inside and laid down. Before the accident I was in, I would have laughed and talked with them and ran around the yard with gusto. But that's not now.

I'm still pretty upset that I was even expected to be able to do that. I've always been the daughter to live up to the expectations given to me (I'm the oldest). I feel like a total failure because I can't now.

I asked my boyfriend to get me lunch. My stepmom seemed frustrated that I needed lunch earlier than the family was going to eat.

Saturday was supposed to be my birthday celebration and it ended up giving me a major setback. I could do NOTHING yesterday. I think it's been months since I was so bad off. Today, I'm still dizzy and unable to do as much as I could before Saturday's celebration. I'm pretty upset.

My parents just did not understand before yesterday that everything I do, each sentence I say, is still such a struggle for me - and that's on my good days. I try to tell them what it's like, but I don't see them very often and we don't speak on the phone much either. I was very successful and capable before the accident and now I'm basically disabled compared to how I was before. I'm not legally disabled, because I make too much money - even working only twenty hours a week - which are still a huge struggle for me and it's just so frustrating that I'm like this! I don't speak as well as I used to and I am still unable to even drive on the freeway because my brain just can't handle it - there are too many variables to pay attention to and they're all moving too fast and I have trouble just being a passenger on the freeway. It's so disheartening. I've been recovering for more than 21 months. I'm still getting better, but on days like this I just feel awful in so many ways.

I texted my stepmom to tell her that I'm just not as well as they think I am. They realized that on Saturday. I explained to her that it might take me years to get back to the person I was before the accident. She seemed to think I was just being pessimistic. I don't think they have an understanding about what's going on with me. I don't think they want to.

I know I'll be better after some rest. I don't know how long it will take, days or weeks to get better back to where I was last week. But it's just so damn depressing and frustrating. Last night I had insomnia caused by just the mere thought that the auto accident I was in has taken away my ability to drive on the freeway. That's so not right! That's so unfair! (I know this thinking is futile, but I get it every once in a while.)

My parents think it's best for me not to come out again for a while. What is that? A supportive suggestion or a punishment? I'm not really sure.

I'm so sad about this situation. I just want to be normal again!

I know everyone on this board feels the same way about themselves and their loved ones... I just needed to vent.

["Starr"]

*hugs* to you EsthersDoll.

I'm so sorry you've suffered a set back. I totally get the feeling of injustice at what's happened and being angry about it.

I'm sorry your boyfriend let you down on helping to communicate what you needed. That must be very disappointing and if it happened to me, I would feel very alone and unsupported. *hug*

I also understand difficult parents. Mine live about 6 hours away and I've not seen them since my accident. They are supposed to come visit for a weekend in 3 - 4 weeks (oops, I forget!) and honestly, I'm dreading it. (more than usual! and I only see them twice a year because of the distance.)

Because my accident happened while horseback riding and that is something they've been dead set against since I started when I was 7, I did not even tell them about the accident until 2 weeks later. There were a couple phone conversations in which I spent all my energy trying to sound normal. Very difficult and stressful and honestly, I don't really remember the conversations... maybe they thought I was on drugs or something?

When I did finally tell them what happened their reaction was to yell at me and tell me that at 40 years of age, I had no business riding horses, because its for children. I did snap at them about that and since then they are afraid to ask me how I am. I would be ok with telling them about how I feel, but I don't care to be lectured about the dangers of riding or how ridiculous it is, etc etc.

They've asked a few times if they should delay their visit and I've said no (would rather get it over with!) but I've also said that this visit may be different from other ones.

Generally when they come I cook 3 meals a day, with supper being a borderline feast. I also clean up and have no dishwasher. My husband will help, but someone also has to entertain them while I'm busy, so I usually do it all. When they go home, I sleep for about 3 days and that was BEFORE my accident!!

I have warned them that we may do simpler things and that I may need to take a break and lie down while they are here. They are unhappy about this and have said they may delay their trip until I'm well enough to do it like I normally do!!

I've told them to just let me know a day or two before they come, they can decide if they want to visit with us or just eat our food!

If, as a group, we didn't have so many food sensitivities and special diets (my daughter and I are gluten free, my mother has stage 4 kidney disease, diabetes and has had a 6 way bypass heart surgery) I would just order up pizza for each meal while they were here!

Anyhow, take it easy, get some rest, look after YOU... Make yourself your priority... very hard to do... not advice I find easy to follow, but I try to keep reminding myself about it.


Starr

[camyam73]

I wish there was a HUGS button instead of a thanks... SIGHS.

I am so sorry for your setback hon. You're such a rock here for all of us. Know that even if they don't get it (and many non PCS people won't ever understand!) that we ALL do!

AS for the reason why not to go back... don't worry about it. It's doubtful you'll be there anyways, so why worry about the reasons behind the request????

I've had a pretty hard life, aside from the PCS. IT's pretty great now, but I could seriously write a book... Parents are not superhuman, and sometimes they aren't even good people... sounds like you have just normal people who don't quite "get it"... and that is ok!

Now imagine... My mom came to my wedding (I didn't want her there, but she insisted, LOL), and proceeded to tell everyone I was a *****. Nice huh? My dad seven years ago stiffed me for payment of a christmas gift, and then hasn't bothered speaking to me since (I do jewelry and he bought a set for his wife). He didn't even bother to call when my grandmother died, when I landed up in a women's shelter due to my abusive marriage, or when I got remarried....

Your parents seem tame comparatively, LOL.

IT's all in the perspective... Your parents love you, and while they aren't dealing well with your abilities and limitations... without a doubt they love you.

[EsthersDoll]

Thanks for the support guys! I just came back to delete my post, because it's a lot more negative than I like to be... but it happens. And then I noticed both of your very supportive replies, so I think I should leave it alone.

And you're right camyam73 - I have wonderful and supportive parents and they're dealing with their own issues. They do love me a lot and they try very hard to "get it".

My boyfriend is also usually very supportive and wonderful and I wouldn't be doing half as well as I am no without him.

I'm just so frustrated that I'm not able to be who I was before the accident and it feels like it's been so long. When I feel like this I get scared about having to deal with "permanent effects" even though my Dr.s given me a very good prognosis.

After I'm better rested my perspective will most likely lean towards being more positive and optimistic about the whole thing. I've noticed that when I'm tired I do very poorly emotionally which is a big reason why I try very hard to not overdo it; I don't like feeling so rotten.

It's just par for this course. (Can we play a different game now? Please?)

And Starr - I'm sorry to hear about the lack of understanding you've gotten from your parents (you too camyam!) (I feel like a spoiled brat sometimes...! I forget how good I've got it even though I'm not doing as well as I one was...) I hope you tell your parents that lots of people get concussions and you can get one in an auto accident that isn't even your fault (like me) so it doesn't matter how you got it, just that you did. I'm, personally, very proud of you for following your passion. (We need more people like that in the world! It would be a better place! Because people would be happier.)

[Mark in Idaho]

Kim,

Sorry to hear of your bad day, especially on your birthday. I understand your need to vent.

Regarding your stepmom's comment, I don't think it was directed at you like you suggested. From how you described the day, it sounds more like your stepmom was saying, "I don't want you coming back until I don't have to be subjected to you limitations. I don't want to be put in the position of needing to make accommodations for your condition."

I am sorry you have to deal with this kind of attitude. Maybe your stepmom needs to watch the "You Look Great" YouTube video series. In fact, those extended family members who were there will benefit from watching it, too.

I bet your boyfriend will be a bit more proactive after this event. But, you should discuss this with him to arrange the protocol. Something like: When he is concerned by an event, he pulls you aside for a private conversation to ask if you can handle it. Or, if you are concerned, you pull him aside. Together, you two decide if the activity/event is too risky. If you decide it is, he makes the explanation for you. It would be better to not put the load on his shoulders alone to act. He needs to know that you are ready for him to step in and speak up.

And, remember that your extended family and other social contacts do not understand your condition. Sometimes, there might be an opportunity to have a teaching moment where you can explain the struggles of someone with PCS. When people learn a bit, it can empower them to be compassionate. Most people will not react negatively. Those that do will expose themselves as the jerks they are and you can take steps to protect yourself from their attitudes.

If you need some tips for how to explain the struggles, let me know and I will assign some brain cells to the need.

Well, time for me to got get some Tylenol. My head ache is just getting worse.

My best to you.

[EsthersDoll]

Originally Posted by Mark in Idaho

Kim,

Sorry to hear of your bad day, especially on your birthday. I understand your need to vent.

Regarding your stepmom's comment, I don't think it was directed at you like you suggested. From how you described the day, it sounds more like your stepmom was saying, "I don't want you coming back until I don't have to be subjected to you limitations. I don't want to be put in the position of needing to make accommodations for your condition."

I am sorry you have to deal with this kind of attitude. Maybe your stepmom needs to watch the "You Look Great" YouTube video series. In fact, those extended family members who were there will benefit from watching it, too.

I bet your boyfriend will be a bit more proactive after this event. But, you should discuss this with him to arrange the protocol. Something like: When he is concerned by an event, he pulls you aside for a private conversation to ask if you can handle it. Or, if you are concerned, you pull him aside. Together, you two decide if the activity/event is too risky. If you decide it is, he makes the explanation for you. It would be better to not put the load on his shoulders alone to act. He needs to know that you are ready for him to step in and speak up.

And, remember that your extended family and other social contacts do not understand your condition. Sometimes, there might be an opportunity to have a teaching moment where you can explain the struggles of someone with PCS. When people learn a bit, it can empower them to be compassionate. Most people will not react negatively. Those that do will expose themselves as the jerks they are and you can take steps to protect yourself from their attitudes.

If you need some tips for how to explain the struggles, let me know and I will assign some brain cells to the need.

Well, time for me to got get some Tylenol. My head ache is just getting worse.

My best to you.

Thanks Mark! I hope that headache is gone now!

I'm not exactly sure what my stepmom meant by her comment that I shouldn't visit for a while... and she was actually telling me what my dad said. I can't ask her until I'm doing better. She and my dad have been very supportive of me during this ordeal, it was probably just my perspective that made me think the comment was anything but.

I get really weird when I'm so exhausted; I tend towards really negative thinking with some added confusion.

I'm feeling much better today, but I'm still really tired and need more rest than I have in recent weeks.

My boyfriend and I talked about it; he didn't feel comfortable suggesting that I not to the hunt because it was my stepmom who instructed that it was going to happen! So he felt just as obligated that I try to perform the way I was expected to by her as I did! Pulling me aside like that is a very good idea, I will mention it to him. Hopefully we can both remember to do so. My stepmom has already promised not to have any more scavenger hunts. She just didn't realize I wasn't doing better.

I think she and my dad want me to be better than I am, so they kind of assume that I am. And I'm not so great at talking about the challenges I face everyday because I prefer to focus on the positive - so I've really only told them about my improvements over the last few weeks.

I think people living with brain injuries and PCS have to deal with a lot of miscommunications - at least that's been my experience. But when I add miscommunications with sheer exhaustion it can be a personal recipe for emotional disaster. (And another word that I can't quite remember right now! But it's on the tip of my tongue!)

And it's just another lesson on how I need to stay vigilant and pace myself now matter who I'm with. I'm able to do so at work and at home and when I'm visiting friends for the most part, but now that needs to be transferred to my parents house. I think a part of why it was extra difficult for me on Saturday is because they are my parents and they were in a place of authority for me for so much of my life and this condition has got me all discombobulated.

I don't think you need to allocate any brain cells towards helping me to educate my family or friends at this point. They don't get really it, but they're do the best they can. Thanks for the offer! I might take you up on it someday in the future.

[Mark in Idaho]

Kim,

Sometimes I use a comments like, " It sounds like fun but I don't think it is worth me having to struggle if I get over-whelmed."

Something you may not have noticed. Do you have problems with vertical movements of your head? I get in trouble if I am bobbing up and down as in walking around the yard pulling and picking up weeds. If I lean over to reach the grass, I can have problems after a few ups and downs. If I squat to reach the ground, I usually do better. I also struggle with too much side to side head movements. I have learned to turn my shoulders to look side to side. It appears the shoulder movement slows the speed of head rotation.

I learned this cleaning up the back yard after my dogs. It could leave me a space cadet. And, it was not dizziness like the therapist suggested. It was cognitive confusion.

Just in case, The comment that works best for me at group gatherings is, "The part of my brain that is supposed to filter out all the extraneous sounds and voices so I can focus on just one voice does not work properly due to my injury. This makes it so my brain tries to listen to and process all of the sounds around me at the same time."

Most people do not know that their brains are filtering out so much sound.

This helps them understand how to try to accommodate your needs.

My best to you.

[EsthersDoll]

Originally Posted by Mark in Idaho

Kim,

Sometimes I use a comments like, " It sounds like fun but I don't think it is worth me having to struggle if I get over-whelmed."

Something you may not have noticed. Do you have problems with vertical movements of your head? I get in trouble if I am bobbing up and down as in walking around the yard pulling and picking up weeds. If I lean over to reach the grass, I can have problems after a few ups and downs. If I squat to reach the ground, I usually do better. I also struggle with too much side to side head movements. I have learned to turn my shoulders to look side to side. It appears the shoulder movement slows the speed of head rotation.

I learned this cleaning up the back yard after my dogs. It could leave me a space cadet. And, it was not dizziness like the therapist suggested. It was cognitive confusion.

Just in case, The comment that works best for me at group gatherings is, "The part of my brain that is supposed to filter out all the extraneous sounds and voices so I can focus on just one voice does not work properly due to my injury. This makes it so my brain tries to listen to and process all of the sounds around me at the same time."

Most people do not know that their brains are filtering out so much sound.

This helps them understand how to try to accommodate your needs.

My best to you.

Thanks Mark!

Yes, I have trouble with head movements, but it's been getting better overall. I don't know the specifics of the head movements that give me trouble like you do; I hope mine will continue to improve before I need to understand the specifics. I tend to keep still as much as possible. I get dizzy like your therapist suggested more than have an increase in cognitive impairments from it, but if it continues long enough, then additional cognitive impairments and speech problems ensue.

I've been thinking of going and getting the vision evaluation Eowyn had success with. I haven't really been able to afford it, but it looks like I might have some "extra" cash at the end of this month. I put the term "extra" in quotes because I've really amassed a very uncomfortable amount of debt as a result of this injury and it's a difficult decision between paying some debt down or using it on therapy that might help me improve. I think I'm leaning towards vision evaluation at this point.

I've tried to explain about the filtering thing to my parents before and did so again after the awful snafu on Saturday. They really have trouble remembering all the details and understanding them and when I'm overwhelmed I have a lot of trouble communicating because my thoughts are jumbled and fatigue tends to increase word-finding difficulty and speech problems.

I think that the effects of an injured brain are very difficult for someone whose never had to deal with them personally to understand. I've been trying to figure out a way to communicate the finer details to someone who has no idea what it's like. I think it's important for our society that people understand what concussion victims experience. I've read that because our auto safety increases, there will be less deaths from auto accidents, but more head injuries to have to recover from and that's alarming to me given the current level of understanding that the average person and average Dr. has of brain injuries.

Luckily, I'm doing better today than I was since Saturday. I just need more rest. (The biggest problem I face right now is that: I don't want to rest! I don't want to pace myself! I don't want to have to deal with a setback! I want to be normal again! Right now!) I expect that I'll continue to improve as I rest over the next couple of weeks. That was a huge setback for me - and it's just very disappointing. Luckily, I have more cognitive faculties than I did over the last few days which enable me to better handle it.

I'm just still very impatient with the process of recovering. Presently, I need to be more conscious that it's going to take more time... and that the more patient I can be, the better I'm going to feel and therefore do while it's happening. Being patient through this recovery has been a constant challenge for me. I do better with it, when I'm better rested. When I get tired, any patience I may have goes right out the window. (That insight would be a good thing for me to remember when I'm tired!)

It also probably didn't help that I canceled my weekly therapy session in order to "celebrate" on Saturday. I swear my therapist has been like a lifeboat for me during this ordeal. I'll see her this weekend and she'll help me wrap my wounds and I'll feel better after that too. ::sigh::

[Dolfinwolf]

I'm sorry you had a setback...! Glad to hear you are sounding better toward the end of the thread here...i totally understand where you are coming from as far as your parents go; I am in the same boat.

My dad thinks I am "all better" since I made it (barely) through a 6 hour shift at work...ha ha! I am there with you on wanting it to be all better right now! I wish I had words of wisdom or help for you, but sadly I don't. Just know that I understand (i had my birthday this past week too and experienced similar).

I am glad you took the time to share your struggles because it helps
me and others know its okay to have setbacks! (sorry I am not great at the writing part like I used to be yet...i wanted to let you know we are all here for you and ended up rambling) hope your week continues on the upward!

[Mark in Idaho]

Kim,

If you can, try to put together a paper explaining your symptoms and limitations. This can be a big help when you have to attend a function like Saturday.

Try to keep it simple and in terms that the PCS ignorant can understand.

You will find that putting your struggles down on paper will help you sort through those struggles. List the work-arounds and other accommodations that help.

For example:

I am easily over-stimulated by sounds and voices such as in:

a room with lots of people talking.
a room where there are echos or sounds and voices. I can hear echos that most people do not hear. Auditoriums and gyms/arenas can be a problem.
a seating location too close to speakers
an environment where there are unexpected/startling loud noises.
I am confronted by someone shouting at me

It helps if:
I wear my ear plugs.
I have a quiet room to escape to if I start to struggle.
People do not try to all talk at the same time.
Somebody covers for me if I have to make a sudden exit.
The TV or radio or stereo is not on while people are talking.

If I become overwhelmed:
Sometimes, I can take a quiet break and recover to be able to rejoin the group.
At my worst, I will need to leave immediately, usually without much of an explanation. It may take me days to recover at home with rest and quiet.

Over a few days, you can work through a list like this and slowly add and improve it. Have your boyfriend read it to make sure it is understandable.

Issues to consider are:

Sounds and voices,

Visual stimuli

Movements and other physical activities

A need to be involved in conversation, especially intense conversation

Anything that puts someone else in control of timing such as "You need to do 'such and such' now." without any ability to take a breath and prepare for the effort.


I think I have covered most of the risks of attending social events.

Hope you can make sense of all of this.

My best to you.