Frustrated

[SarahLou]

Hello guys,

I'm feeling really frustrated with myself today.

Last night we went to a friends surprise party.

It's the first time since my SAH that I've been to something like this... Lots of people, loud music, bright disco lights.

I thought I'd cope ok, I've been coping better with other social events.

I went with my trusty survival kit (ear plugs, sunglasses etc!) and as soon as I got there I checked out places I could escape to for a little break if needed.

I coped ok for a couple of hours, sat as far from the DJ as I could, had my back turned as much as I could to all the lights that were flashing around the room. The music volume was a bit lower at first. Coped fine chatting with people.

Then after the buffet, up went the music and lots of people dancing. My dear friend begged me to dance with her , she knows I've always loved dancing, but I had to explain that since my SAH that's something I can't do now.

Thankfully I can happily dance around my own living room, but not when there's loud music, lights and big crowds of people. That made me a bit teary, but she held my hand and said although I may not of got that back, I have got lots of other things back.

I was starting to feel rather drained and knew I'd have to leave soon, said to the hub that I'd like to go soon, was in the middle of holding a conversation when my brain went into shut down. Just like that.

I looked at the hub, who said 'we're going now'....

I couldn't get my words out, couldn't walk properly and felt ashamed of this.

I knew anyone looking at me would think I was drunk.

It's normally just my hub and Miss C who see me when my brain goes into shut down like that so I'm sure it was a bit of a shock to some.

Once I'd got home it took about an hour of being in peace and quiet for my brain to calm down a bit.

Today my whole head is so full of pains.

My emotions are all over the place.

I want to cry, scream and stamp my feet!

But I also know that it's ok to feel like this.

It will not stop me from trying to get 'normal' back.

The frustrations we feel following SAH are such a challenge.

Big deep breath..... Bring it on!

Take care,

SarahLou Xx

[Tina]

My heart goes out to you Sarah Lou xx

The frustrations we feel following SAH 'ARE' such a challenge, but look how strong you are and how you are coping with getting back to 'normal'.

Never feel ashamed ! Maybe those that were shocked by what happened may have a better understanding of what you have and are going through now.

I really hope that you can rest up today and that your head pains improve xx

As you say lovely lady.....

Big deep breath..... Bring it on!

Love & hugs to you xx

[Karen]

Bless you Sarah Lou and think that you've probably described social events pretty accurately for a lot of us.

I must admit that I still find social events a bit like going on a mission....where as before the SAH, you don't have to think about it, as it would just be an enjoyable experience.

I'm much better at dealing with it now and some social events have gone okay and others not so good ... all depends on how I'm feeling on the day.

The social events that I really don't enjoy at all now, are the business dinners for clients that I have to attend for the firm that Eric works for... I find it absolutely hard work making small talk and the last one that was organised had 40 guests which was too large for the Restaurant to cope with, wasn't at all organised and totally chaotic, so I found myself running about like a Waitress ... in fact, one of the clients actually thought that I was a Waitress and asked me for a plate... We're both one of the "oldies" now at his Company, so you just muck in and plus I worked for them pre-SAH, so I know the business. I will do my best to get out of attending any of these now...but it doesn't normally work!

Unfortunately I still experience my brain shutting off when it's got too much and for me, it's a warning sign to get home and get some quiet time or sleep. This really hasn't changed for me, but like I say, some events have gone better than others and I've definitely improved, but it's still there.

xx

[Tina]

I also still experience my brain shutting off and like Karen has said, some events go better than others. I do believe it is how you are feeling on the day and how stressful the situation is. I always try and have a sleep during the day if I am going to have a late night. Normally by 9pm my body just starts to close down and I find it a real struggle to stay awake and function.

It happened to me once when volunteering during the day. I could not function, my balance went and was all over the place. One of the volunteers had to drive me home...I remember feeling mortified and so embarrassed, but when I went back next time they were lovely and understanding.

SarahLou bless you, look at what you have achieved....started a brand new job and doing really well I have huge respect for you xxx

Edited April 6, 2014 by Tina
Typo ;)

[Skippy]

SarahLou

Please don't feel ashamed or embarrassed hun - those looking at you and thinking you're drunk should be the ones who are ashamed. You've achieved soooo much - probably more than some people I know who haven't had a brain trauma!!

You're an inspiration to Miss C and many of us on here!!

[jess]

Sarah lou hope you're feeling better today we have all been through it don't let it get you down xxx

[Super Mario]

Don't beat yourself up. I get like that at times when I have tried to do too much.

Don't forget that you are contending with a new job as well that will be taking its toll.

[victoria conway]

Sara Lou

How I sympathise. I managed to attend a 50th birthday party fairly recently for a very close friend by dint of spending most of it sitting in a room away from the music, lights and crowds. Oh, and finding the door first off so I could get out in a panic (spent several spells out in the drizzle!). Towards the end, Chris decided that he had to dance with me before the end of the evening. Between him and my husband, I was relieved of my walking stick and pushed out onto the dance floor. I think he lasted a minute or two before he gave up as I had nearly pulled his sleeves off!

I cannot understand why men think it will do me good to be forced into doing things. My husband thought it would be a jolly good idea to get me back on a boat and go sailing a week after I came out of hospital! To this day, I cannot contemplate it in my own mind and he truly doesn't understand it. I have shown him your post and said - "Look, I'm not the only one like this." So thanks for giving me that opportunity!

I say - have a little rail - I do, mostly to myself - why? - and I don't want to be like this. Sometimes to the husband but that's like firing at a brick wall, really. He is of the belief that "you should be better by now" - but it doesn't work that way, does it? Oops, I'm railing - gets it out of my system before the start of the next week and whatever that brings!

[Winb143]

Sarah L,

I'll go with what the others say.

You are doing well SL and as you know I come from a big family and sometimes a phone call gets me down.

You are doing well now relax and try it again, never say never. One day we will get there x

I hope you and family are all well as they are what matter to you and you to them.xx

Be Happy and sing.

Love

WinB143 (SMILE Also) xx xx

[iola]

Don't ever be embarrassed or ashamed. Hey, I was supposed to have an MRI last week and couldn't do it. They put me in the tube and within 5 seconds I said to get me out. I was sooooo embarrassed. And, if it makes you feel better when I am at work I completely zone out in meetings and if someone talks to me too long I couldn't tell you what they said. I tune them out. It's like, blah, blah, blah.

Smile, you are a beautiful person.

Iola

Edited April 7, 2014 by iola

[Louise]

Hey honey don’t feel frustrated with yourself, you’ll be feeling tired after your outing so hopefully now your in a better place, headwise...

I’m glad you know that is ok when we feel like this & pleased to hear that it wont stop you from trying – that-a-girl...

I wouldn’t worry them looking at you thinking you were drunk, they may have been and wont remember so dont worry..

They always crank up the volume after the buffet and do the club music I SO hate that, we went to a 30th I had to come away, went to a 50th I had to come away, so when we got invited to our friends daughters 21st I was filled with dread, & you know I was able to stay till the end and danced a lot, so you just never know do you.

Like you there was a time that I couldn’t dance with the music & lights but I started slowly with (dare I say) a slow dance with Ronnie till I got used to the music/lights and now unless the dance floor is really packed its not a problem...

Take care

[Daffodil]

Hi Sarah.

as louise said I hope you are feeling bit more on an even keel today. I put it down to a reduced capacity to take neurological load.

If you were not carrying any excess luggage then you may have got away with the noise and lights and maybe even a dance but with the extra load of your new job your special brain did that horrible 'shut down'...how I hate that although I am beginning to be less scared.

So actually, a huge well done for not being scared or freaked by it and for reacting well and 'so what' if people thought you were drunk, let them!!!

sending hug

[DawnS]

Gatherings of any size are exhausting. Parties have so many aspects to them...lights, noise, movement, conversation, noise. Did I mention noise?? What used to be fun is now at least two days worth of headaches and maybe a week or more of fatigue. Well done for going at all!

Perhaps even though it wasn't the best of nights, it is actually a sign of progress...could you have managed it at all three years ago? Two? Although it's not nice to let other people see you feeling so floored, it may be good for them to be reminded that although you have improved, the effects of sah are long lasting and don't simply vanish. Sometimes I wonder if we do ourselves down by being so determined to be 'ok' because then people are surprised when we are not.

So, people saw you staggering because attending a party caused you to be neurologically exhausted as a result of surviving a major trauma to the brain. I'm sure that plenty of people left that party staggering because they had chosen to get plastered. Why is that less embarrassing?

I hope the fatigue is lifting and that you feel better x

[SarahLou]

Thank you all so much for your kind words and support, as always, your strength becomes my strength.

I'm not quite sure how I managed to get through my shift at the hospital today but I'm pleased to say that my head pains are finally easing off now.

My colleagues were great today, I was talking about my weekend being full of frustrations and tears, trying to explain how things are for me now. I mentioned 'the spoon theory' to one colleague and she looked it up there and then.

I was touched when later on in the afternoon my manager came to talk to me about it too, asking was I ok.

I'm so lucky to be working with a team who are making the effort to understand.

I also spoke with the person whose party it was, I felt that I wanted to apologise that they got to see me like that, he told me to please not worry and that I was amongst friends. They are grateful I made the effort to go and understand what it meant for me to do so. I do not regret going, life is all about making memories, however if a social situation comes up again like this I will put more thought into it and better planning.

I can't help the way I feel right now and the confidence blow it's given me.

Louise, bless you...You give me hope... Maybe one day I will get to dance the night away with my friends again.

Thank you again everyone.

Take care,

SarahLou Xx

[Winb143]

I switch off when people go on and on, rude aren't I ?

I go into my own zone and switch off and just go "oh really, oh yes".

[kpaggett]

I always find that SAH teaches me about my past. It alerts me to ways that I have always carried myself and all the expectations that go along with that.

The load is now too great for all of my previous expectations for myself. Why do i have them? Which ones are serving me today and which do I need to work on casting aside?

I don't have to be the last one at the party...I can be the first one when everything starts out quiet and leave early as people naturally get jazzed.

I can find happiness in not accepting social pressure to behave a certain way in a given situation. I am a strong person, I can find a new way to fit into society.

No one really cares about how I am coming off when they are concentrating on having their own good time, anyway. Growth. It can be so hard and large after SAH.

~Kris