Well the rain finally stopped and with a little encouragement from my wife decided to go for a walk and call in and see my daughter.
The sun was out and was geelling soooooo good. Was talking to a friend of my daughter when I thought I was given a compliment.
"You can hardly tell you had a brain injury " he said.
I felt rather good at first. I have never denied what happened to me but U must admit I try and cover it and be normal( whatever that mens). I do this so I can manage the world and not for anyone elses benefit.
I then spent the next hour trying to explain the problems I encounter.
I soon realised I was having to justify my condition.
The positivity I was feeling soon melted away as once again I was having to prove my illness.
Well the walk was cut short and the fresh air has done little for my gloomy mood.
Why do we have to do this all the time. I am proud of my recovery so why do I feel like a fraud for managing to have a good day.
Sorry for the downbeat post.....roll on tommorrow....lets see what it brings.
Written by
paxo05
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I would not worry about justifying your condition with details -anyone asks me I just say that I'm better than I was but have plateaued out for a while.You might perhaps apply this to your current status-still some problems to fix but I've learned some tricks and adaptations ?Or perhaps, ' still some ups and downs but today is a pretty good day '. This lets people know that while you have made some improvement you are not 'all better'.A lot of people's ideas about recovery is one straight steady continuous upward improvement to perfect -as with a broken limb etc.We know differently-peaks,troughs,flats,we are a work in progress : ) x
I do explain that days are different but find it frustrating that I have to some how prove that it is a fluctuating condition.
I know I bring some of it on myself as I only feel comfortable in public with my "normal" head on.
That is to say I only seem to be able to deal with the outside world if I pretend to be as normal as I can.
Although this is tiring I find it is the only way I can deal with the big bad world.
I must stress that I do this for MY benefit and not to fit in so to speak.
I think it caught me off guard when I was told I didnt seem to them that I had anything wrong with me.
I was not really ready to have to go into such detail to "prove " my condition.
I know I am lucky that I have very little scaring visible and apart from having a slight limp, due ti loss of sensation in my left leg, I do at first glance seem "normal".
It was only talking to them that I realised they were not complimenting me on my recovery but doubting my condition.
Although I doubt that they will ask me again as I have been told I was a little sharp with them. A red mist moment may have cone over me.
I know it is often said tgat bi is the hidden illness but no matter how many times people are told this it doesnt seem to improve the situation.
Well thats enough of feeling sorry for myself for today and I promise to be more upbeat once more. Think I will calmly smile at tgem in future and say nothing.....it seems to get them worried and make them wonder what you know and they dont.
I know I sometimes get a case of verbal diahorrrea about my bi especially when I sense doubt or accusation and it is exhausting.
Paraphrasing something you said ...... I can only cope with the big bad world when I feel at my best. Just a thought but have you considered letting the big bad world cope with you?
I once told my OT that I have to plan for visits or going out and when anyone outside the family sees me I am at the best that i can be at that point in time.
Sometimes I wonder if I get so easily upset because I have difficulty accepting the way I am.
If people ask I tell them I'll never be the same as I was but I can manage the me I am. I explain that if they could see a scan of my brain they would see areas that are damaged that cannot be fixed. This seems to satisfy most people.
I also say that some days are better than others, that's usually enough.
Most people ask how you re out of politeness, they don't really want to know, galling I know, but a fact of life.
I've said for ages now I'm better when I'm on my own, that way I don't have to live up to others expectations. Sad really but I can usually up my game for those that really care,.
I know people ask out of something to say, but this time I thought they were saying how well I had done but realised they were just doubting my illness.
Get tired of explaining , and suddenly thought why should I ..
Started today well but been for hormone injection.....yep my body seems to have decided not to produce any.
Strange thing is I have it in the leg I have reduced sensation in. Wish I couldnt feel it at moment as it is raaaaaather painfull at moment.
Apart from that feel ok hoping to go for a walk tommorrow....if weather ok. Hope you are well to. Once again thanks.
Sorry its took time to answer your reply( still recovering from injection). Glad you are feeling more positive. Give the smiling a go ....it really unnerves some people. ....and I find it rather amusing. Childish I know but hey who says we have to grow up.
Some years ago I vowed ( apart from any medical situations ) not to explain or justify myself to others. The fact I was caught out anx having to do just that I think annoyed me more than anything.
Oh and about you feeling a bit down , I am sorry to hear that but dont be ashamed of this. If we did get fed up and a bit low we wouldnt notice and enjoy the good days.
All the best and remember SMILE.
Yes, continually having to justify and for ESA etc. PROVE. Tried describe my everyday life (how it all affects me, the risks, dangers and costs = to me and society) but get lost, it's too big, can't do lists and forget really important things! = FAIL!
Had someone today say think how lucky you are not in wheelchair and YES, I KNOW. I do know that. But that doesn't mean MY pain, injuries and difficulties don't count and don't make my life a misery in some ways.
We with ABI are left out of SO much, OUR difficulties aren't widely-known, catered for nor accepted as DIFFICULT. There's LOADS I'd like to be able to do but FATIGUE stops me or else like Monday I do FAR too much - which to any normals is next to nothing at all.
I think today when he said that he might well have been playing devil's advocate to help me think (he didn't say it nastily), I'd like to think so anyway!
Oops, can't remember what this post says now that I'm replying to. Bit tired, sorry.
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So tired of trying so hard
What does it feel like to you?
Feeling shell shocked
