Hello, I'm new here ... oh hold on, I'm new to me too!

[trishy63]

Hi, I'm using a compute to contact the world again... great... I think I must be recovering!  Was in fatal road crash October 2014, thought i was ok when discharged from hospital 2 months later, cos all the broken bones were healed or healing. Was not told that I had suffered a SAH or Mid Line Shift .. and so learned along the way that the world was suddenly .... weird .... and then weirder.  Learning now that despite all the 'its still early", "you've more rehab tasks to work through", "you're doing great". These well meaning words have delayed my Acceptance that I will most likely get to keep some of my symptoms.  Also makes me feel like Im making a fuss about something that has got better and will continue to get better, in short, milking it.  I look ok, in fact better/fatter than i ever did. I balance with a crutch because I wobble, I have sensory impairment crossing the road. But, the comments I get are "Hey, you dont need that stick to walk" Your gait is perfect, and your leg no longer broken. That makes me feel like a liar.  They dont see the incontinence, or the Fatique, or the Emotional Lability or the Inability to process information in a noisy environment. They dont see me walk out of the shop because I dont know what I went in for. They dont see me cry when I get home, convinced that I made a correct purchase, but was distracted enough in the shop to get home and surprised to find out i actually bought something else. Damn you hidden disability, You make people so challenging ..... Trish

[cat3]

Welcome Trishy.  What a lovely lady appeared smiling at me when I opened your post.............great photo !

Your comments will be so familiar to folks here ; the hidden disability stuff is always a current theme so you'll find yourself in good company, and with someone always ready to hear whatever you might have to say.

All best wishes, Cat x

[trishy63 in reply to cat3]

Aw thanks for the compliment Cat. I was trying to upload a profile pic, but my 2nd attempt will be better, lol.  I've just found you and so now looking forward to having a rant with some kindred spirits. Hope we speak again soon, Trish x

[cat3 in reply to trishy63]

      x

[Elenor3]

Hi Trish, welcome I'm at a similar stage to you but without the crutches but get the same reaction when using my bus pass (by the way - maybe you should apply for one of these?) , but looking physically fit and well, so it's difficult for anyone to have a clue what you're struggling along with .......... The world in general.  

This is a wonderful group for advice, t support and just for having a good rant when it all gets too much. Sorry to hear of your accident but pleased that you've found us x

[trishy63]

Hi Elenor, Thank you for your kind words of welcome xx  Did you have a TBI? I have also just come across stickmancommunications on the web. I have ordered a pile of cards that act as communication 'labels'. I am really hoping that I can get by with those and stay sane/mute .... will keep you updated with how that pans out .. tee hee xx

[Elenor3 in reply to trishy63]

Yes - SAHA and Subdural haemorrhage & fractured skull amongst other things.    Doing my best muddling through &trying to get fit for going avk to work. One day this seems like a great idea, then something happens to make me think 'What are you even thinking? ' No two days are the same - it's one step forward two steps back some times - but lots of improvement since the accident so trying to remain optimistic (which is almost impossible some days). It's a whole new way of being. x

[Kirk5w7]

Hi Trish and welcome. I echo those replies you've already received. I'm 4 yrs post BI caused by viral encephalitis and still seeing improvements, although minor now compared to the beginning.

I get " what it was just a virus !" Yes it was just a virus, a pretty devastating, life threatening one. But onwards and upwards. First time I've seen someone mention the incontinence, very brave of you but thank you. That bit hit me hard trying to toilet train myself again at the age of 60! At least I knew the best way of going about it!.

So, welcome. I'm finding this warm weather a godsend, and hitting a good patch too.

Look forward to hearing more from you .

Janet x

[ktie]

Welcome, I had a SAH and to all the world I am now fine and back to normal, even my GP is under this impression!!   Oh wishful thinking.  From your post it seems you are managing quite well with the new you as you get to know her and her quirky traits  Good luck with your ongoing endeavours x

[Hidden]

Stickman Communications does some really good badges / signs etc about being "differently normal", I had a SAH about 4 years ago and provided I manage my fatigue etc, I can appear quite OK, but I get lots of weird looks and some times comments when I use the disabled parking bays etc as I have a blue badge, find the additional space in 'disabled toilets' a real boon etc.

I have one of the 'Not every disability is visible' sign in our car, and a couple of the pin badges / cards as well.  

Well worth looking at their website stickmancommunications.co.uk/

Regards

John

[sospan]

Welcome,

Yep, being released from medical care because "you are ready" is like releasing a captive bread fish into the ocean - but without all that background genetic instinct.

You have done remarkably well riding the physcial and emmotional roller coaster and discovered (and experienced) the way the public perceive people with disabilities. Several of us have experience the - "look at him he is drunk at this time of the day" as we wobble down the street and slur when we talk.

Change wil be increamental and frustrating on time but I guess you have found that already.

All the best on your journey

[BaronC]

Hi Trish,

Welcome to your (and our) brave new world. Every single one of us on the site know how you feel, not exactly how you feel as the nature of what we all have experienced means that every one of us is different on so may levels. However, the similarities in many cases will of course be uncanny.

We all know fatigue, we all know confusion, we all know what it feels like to be branded as a fraud and we all know what the desperate search for acceptance is really like. There is a piece I wrote entitled 'Acceptance' on this site somewhere. 

If you ever need to chat, vent, whatever, find your way on to the site and yell, someone will soon be along

In the meantime, have a look at this, you might glean something from it, hopefully.

ashokrajamani.com/#!andy-ni...

Best wishes

Baron/Andy

[trishy63 in reply to BaronC]

Hi Andy, I followed the link you gave, thank you.  Your sentiments there so frank and honest, so reflective of many new discoveries for me being mirrored after a year and a half "in the wilderness". And here I thought that I was being mean getting annoyed at that pesky morning birdsong, every single morning, dont feel so bad about that now. Hooray, i'm normal ... well BI normalish perhaps. I am relieved though that I was spared the epilepsy. 

[BaronC in reply to trishy63]

Glad it resonated with you! And yep, you're normal, you just have the odd glitch really. Welcome to the club!

[Nutkin33]

Hi there

That's exactly what we have - a 'hidden' disability. 

It took me 2 and 1/2 years to really accept mine! I will never have a paid job again. Too much Fatigue, and Wobblies. But I am now doing Voluntary Work at Poole Hospital, in the Portland Ward, which is a rehab ward!

I also help Headway Dorset, well, that was before they folded! I am trying to keep the Befriending Groups together, and I make Word Games on my Laptop, for the members to play!

If you haven't already, try and join a Headway, as it's invaluable to mix with other BI people!

All the best and remember, the brain never stops healing, although extremely slowly!

Xx

[Judithba]

Hi Trish and welcome. It's so good to be able to talk and even better on here, where everyone understands what you are saying 😄 I find that because I look like my old self, everyone thinks that I'm back to my pre sah self and I'm not. Some days I feel that I'm searching for her but can't find her, quite depressing really.  I mustn't grumble.  I'm so glad that this forum exists.

Very best wishes

Judith x

[trishy63 in reply to Judithba]

Hi Judith, thank you for your lovely welcome.  Mustn't grumble? well I just don't have a handle on THAT bit quite yet ... but yup, I can mirror those sentiments. My daughter came to help me decorate at the weekend. The old Trish would have loved the help. The new Trish wanted the help but not the company. Socialising is so effortful for me now. The new Trish couldnt keep up with the 'where is .......", I was exhausted.  I needed the help but it came at a cost and now I feel so ungrateful. This is quite 'pants' and also quite depressing ..... but I guess I have somewhere to Take It now, a bit of relief ...

[Elenor3 in reply to Judithba]

Thank you for saying that Judith - I very much feel that way. I even stood in front of a mirror & asked myself who I was in the early days - oh my lord - thank goodness I'm not doing that anymore, althogh im still curious to know  

[angelite]

Hi Trish,

Welcome to our corner : )

I have just been on the stickman website - v. interesting, I never knew this existed so thanks for the info ! Will be having a good rummage round later : )

I and many others on here will identify with the 'invisible' disabilities that you describe - personally I have a mixed bag of both physical  and cognitive but no definite diagnosis as yet ( suspected Encephalitis/ possible MS ). I have learned that there is much common ground between brain dysfunction symptoms, regardless of the cause. I liked your post title - says it all, really : )

Good to see you are still smiling, in spite of all the challenges : )

Kind regards,

Angela x

[trishy63 in reply to angelite]

Hi Angela and thank you for your warm welcome xx I should have added in a warning about the stickman website ... So much of it seemed so useful and £2 not much to pay .. but I ended up with a shopping basket of £40!  holy moly, ... The new me has a much more YOLO attitude to life now, the cautious me has left the building!  Yes I was on a Neuro rehab ward for 4 months, most of my new friends Eventually diagnosed with MS.  Seems they take a long long time to reach such a diagnosis. Many similarities in symptoms and experiences, and as you say got to adapt to the challenges. Finding 'buddies' here is just another whole new adventure ... 

[cat3 in reply to trishy63]

Trishy, I had to nip in here just to say how much I identify with the YOLO sentiment.  I used to be so careful with spending & if I didn't need something I didn't buy it, no exceptions.

Now it's a case of 'I might as well have this................and that.........and those' !

I've become quite well off mind you since accruing a fortune from stopping smoking when I had the SAH over 4 years ago. 

Oh, and there will be many here who identify with the irritation of being with others, even loved ones.  Don't feel bad ; it's all due to the damaged area of the brain.          x

[trishy63 in reply to cat3]

Yes me too.  Working in finance I was very careful to never spend more than absolutely necessary. Now, you are quite right .... we might as well spoil ourselves.  Also stopped smoking, but it was the punctured lung (alongside the other stuff) that kyboshed that habit.  Thank you for being such a trusty mirror Cat! x

[Kirk5w7 in reply to trishy63]

I lost all ability to manage money and unfortunately ran up a lot of debt. Like giving an 8 yr old a credit card and bank account!!!! I begged my husband to take all the direct debits etc off me but he wouldn't, saying I'd learnt once so would learn again and I'm so glad he did. It's going to take me a while to pay off the debt, but I'm getting there and in control again 😬

Janetxxx

[trishy63 in reply to Kirk5w7]

Hi Janet, oh, its that impulsivity thing isnt it. I am spending on what I want, not looking at the bank, or considering if i can afford it. I will take heed of your story though, didnt really consider the consequences so thank you for sharing your story, Trish xx

[Candace8]

Hi Hun, welcome. I have never really had this problem but I'm sure people think it. I have a brace on my arm and my ankle but when it's not visible sometimes cause of my clothing I do get THEM looks when I park in a disabled bay. Sadly due to my brain injury, lol not really but it's a good excuse, I let my gob go . Bad I know but at least it's cause of gobby people like me they will think twice about doing this to someone else in future. I don't know we're you live or who you are actually talking about but I would consider moving as people you around saying these things are very bad for your health. Have u got a headway near you, you need to be around positive people. Stay with us we all lovely 🤗

[RogerCMerriman]

I'm afraid the "you look great" you do by way! is common.

brain injury is fairly hard thing for people do get there heads around. People do mean well on the whole just don't understand.

welcome I found that the vast majority of my imporvments happened early on yes, but even now it's slowly improving. I cracked my head plus some bleeds late 2013.

[moo196]

Just to say Hi and welcome ..... would say most of what has already been said - so won't repeat them all   ...... 

I still struggle with the " but you Look just fine - more than fine in fact"  but there are some of those hidden things that people just don't know/see/hear/understand ..... grrr !  Lost a few friends over my emotional snappiness for a while recently ....  tried explaining - made things worse with one - but have also some hope that it may sink in with them at some point - and am trying to also make new friends along the way. 

My whole lifestyle has now changed and I'm still changing things ...... not sure of everything yet - but we'll see how things go... next big trip planned for next week - eek !  Trying to spend my children's inheritance over the next 20 years cos I may as well spend it now... can't take it with you (whenever)  ... 

I'm planning to watch the Louis Theroux documentary this Sunday - hoping it may help explain a bit more and educate some people !   

K 

[trishy63 in reply to moo196]

Hi K, thank you so much for taking time to read my posts.  Yup the emotional stuff, friends, family, is all hard isnt it. The Louis Theroux documentary? had not heard of that so will need to check it out and ask everyone I know to watch it by the sounds of things.  Thank you for the tip, all knowledge and info on this is always helpful.

[moo196 in reply to trishy63]

Yes, :-), I've put a post on Facebook about it and going to remind people around me again on Saturday....it's 9pm BBC 2. Could catch it again on catch up I player if 9is too late (might be for me ). 

Hoping some of my friends and family will take some things on board....but I suspect that they may not. 

Hey ho .....onwards ! X

[aqua4]

Hi Trishy, welcome from me.I had a SAH 8 years ago. 

The support and understanding from everyone on here is amazing. K

[trishy63 in reply to aqua4]

Thank you for your welcome aqua4. Looking forward to speaking to folk who understand what the issues are because they are so hard to get accross to people who knew you. Look forward to speaking again, kind regards, Trish x

[CindyBurton10]

Trishy63, 

I'm eight years on after a major life threatening brain haemorrhage and can relate to some of your difficulties and experiences above. 

Whoops....sorry! I forgot to welcome you....where's my manners. Hi 😃

Just to add......If you've any queries, questions or need advice ask away and one of your new virtual friends will be around to help 👌😃