Is it BI or is it just me

My Dad or others, mostly my Dad, would probably say these sort of things when I was younger and I would not take much notice but as I have grown up, I notice it more and find it quite annoying. One day, I might be yawning quite a lot in the car and my Dad might say "Tired, mate?", I would say "Yeah" and he might say "We all get like that sometimes" and I have said to him "it's a bit different for me though". Several times he has said something along those lines to me. And so does my Auntie sometimes. It's as if they don't want the answer to be BI related, like they don't want me to be classed as a person with a BI, but more of an able-bodied human being like them. somebody I know from my local Headway was speaking about the same thing, he was caught yawning or had some confusion with his memory and a friend might say "Oh we all get like that" and then he would say to us "No, no you don't". This friend has not got a brain injury and they have no idea what it is like to go through life with one. My Mum is excellent support with me helping me with confidence and independence which I definitely need but even she can anger me when she might be describing my problems with balance and fatigue. I know she can see me getting tired from walking but she doesn't know what I am capable of.

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    "One fine day, I was walking around the block when FATIGUE crept up on me. So I walked home and had a nap, living with a BRAIN INJURY is not easy. I woke up in a state of ANGER for some bizarre reason. Maybe it was something to do with the little dream I had where a guy was WALKING toward me, he took a pencil and notepad from his breast pocket and wrote down the word CONFUSION and said to me "That is one of the signs of BRAIN INJURY". That was all I remembered and then I woke up YAWNING. So obviously, the dream I had probably wasn't the reason why I woke up angry after all :). The end".

  • I really like what you did there! Very creative mind you have.

    Do you use stories like that to remember things? I tried but could never recall the stories!

  • Thanks Danslatete :). I do not use stories or images to remember most things. My memory is in quite good shape which I am thankful for. On Friday mornings at my local Headway, I have a little job as a service user mentor, a partial volunteer in other words, I make teas and coffees for the rest of the group and memorise everyone's drink :).

  • That is awesome as far as I'm concerned!! I go from lounge to kitchen and forget who wanted what to drink. Which is kind of silly as everyone but me drinks tea or coffee with milk and one sugar, I just can't get who's drinking what.

    I'm glad you help out at headway. I used to think it was just about helping me be social but now I see it is much more than that. I loved going but it was a very long day for me getting the minibus pick me up at 12 for a 2 pm start, but I was first pick up and I didn't get home to very late. But I enjoyed going. One activity I struggled with was when they did dominoes. I couldn't cope with the noise.

    It strange now to think that wiped me out when now I'm on the go from 8:30 to 3 now 5 days a week.

    Headway saved me from myself, from being a hermit and hiding away. It helped me with speech and listening skills. It helped me to extend myself and not be scared to try. They helped me discover the new me.

    I can't thank them enough.

  • Thank you very much :). Not to blow my own trumpet but I agree, it is pretty awesome. I have been through a lot in my life, not just BI related. I like to think that I am now on the road to living my life the way it should, I feel like I am in more control. I have been told that my drawings are brilliant and that makes me feel excellent inside because when I had my very first op, I could not even hold a pen! My hands were so shaky.

    I agree with you on how Headway has helped you, they have definitely helped me out too and still are. Once I left college in 2001 I decided to stay home. From there I did not know what to do with myself. I didn't want to go back to college, I didn't want a job and eventually found I could not get a job anyhow so I stayed at home doing next to nothing. Staring at a wall haha or as you said, being a hermit. That was all I did. As you can imagine, my confidence, that was already low, had basically packed its bags on me and went off on holiday, I lost motivation, I was not drawing for years! It wasn't until six years later when I had a check up at my hospital that my mum picked up a leaflet for Headway. That annoys me how Headway are not well advertised and that is not there fault, that is the government for you. anyway, since I joined in 2007, my confidence has grown, my independence has got somewhat better, motivation has come back to me and I am drawing once again. With the help of another disabled group my art has improved which I am very pleased about and it is also great to be a part of another group too. I do much more with myself now and am so glad about that :).

  • Matt this kind of comment is the proverbial red rag to a bull with me!

    I blow up at the smallest thing I just don't realise how small the thing is until someone tells me but to be honest if it's gone that far I still believe I'm in the right

    It's only after I've had chance to cool off that I actually apologise

    But the stranger in the street who bumps into me or doesn't say thank you when I hold the door open gets a mouthful and no apology

    I am not proud of this but I hope to be able to manage it better as soon as I recieve the right support !


  • I don't get so angry at things , as I said before but get highly annoyed. There are so many ignorant people these days who would stare at me as if they saw an alien for the first time and like you pointed out, don't say "Thank you" when you have clearly done a kind gesture for their well being! What I sometimes try to do now is be as ignorant as they are, it doesn't always work out like that though I'm afraid. If I am in a charity shop and someone wants to walk past me, they don't say "Excuse me", they try to squeeze past and almost trip up in the process. Why not just say those two words? Again, if I am standing in someone's way and they are walking toward me then I might turn my back on them so I pretend that I don't know they are behind me and force them to say "Excuse me", if they don't try to squeeze past that is. Also if I do hold the door for someone and they don't thank me then I might say quite loudly "Your welcome!?" :).

  • I'm glad your mum is supportive of you Matt - i suspect everyone of us on here can empathise with the 'oh we all get that' line. I certainly get it continoulsy from my family, they clearly don't want to understand - so I have given up explaining.

    Trouble is my mum doesn't know why I blow a complete hissy fit at her every now and then - as it has been building up and then one final comment and I blow! :-/

  • Hi twin LOL! ;)

  • 8-)

  • That is another thing Hedway has helped me with, because they are understanding of the brain and how people would likely act with a BI, Ibring home my knowledge and let some of my family know. My mum is not only great support but she understands some of these BI emotions, she is sympathetic whereas my Dad is as bitter as a... a plum that is not in season haha. That was the best way to describe it. My Dad is not very supportive, very negative about life in general and puts a right damper on things. I try to avoid him at all costs haha. He is only good at acting like a chauffeur :), he has no sympathy whatsoever.

  • When you say your family don't want to understand, that is quite horrible, sorry to hear it. And it makes me think of a few married people where the husband or wife has come to my local Headway and they tell us about themselves and they say their other half cheated on them or left them. It amazes me when they do that cos I just think, do you actually know why you say your vows at a wedding? They promise to love you through SICKNESS AND IN HEALTH. They must think that means if your other half gets a cold or something. How wrong can they be.

  • I loved your story at beginning of thread :). yep, families sometimes are not great at understanding, none of mine do, I have given up trying to explain. I am pleased you have your mum xx

  • Thank you sem :).

  • the "Oh we all get like that" line is oddly people attempting in there own way being nice. or rather not really wanting to acknoage the degree of the problem.

    heard it all before being dyslexic etc.

    I assume that most people's knowledge of (disablity/differance/etc) is non existance or what they have seen on tv. Common time i do menstion it is taking numbers/notes over the phone my working memory is woeful due to dyslexia and a BI hasn't improved it! so I say "sorry I'm dyslexic and con only manage two digits at a time" works for me.

    rember that familes often have ideas about what kids will do when they grow up, and these tend to be hard to shake, parents often struggle with accemptance.

  • I asked security to leave the corridor lights on until I have left work as I don't balance well in the dark-I find people are happy to accommodate if you explain.I also get the 'you're walking better' from others even though the spasticity has plateaued out for months-they are just trying to be encouraging!

  • I don't like walking in the dark, it's not so much balance in the dark but more that I can't see what Im doing. I normally stick to going out in the daylight but if I am out at night, I must have someone with me. I do find some people are happy to accomidate. Sometimes I go out on my own and get a drink, I ask for them to carry my drink and they are normally happy to help. When my Dad has seen me yawning in the past and has said that we all get it, I think of it as his way to have the last word of the conversation. He is forgetting though,meh has a son who also has the last word of a conversation :).

  • I think it is sometimes hard for others who have not experienced the fatigue to truly understyandhow severe it can be.I decided in my wisdom(I despair of a learning curve sometimes with me!)to try the 1 1/2 hr walk last Saturday evening round the big park with Jess.I used to do this every week with my dogs pre illness no sweat.Sadly I lost my boy and only have my girly lab now.Jess was thrilled as we had not been up this way for a long while-I thouroughly enjoyed it and was pacing myself well,I thought.At 3/4 of the way round I 'hit the wall'.The exhaustion was overwhelming and I just wanted to curl up in a bush and go to sleep!The last 1/4 was a teeth gritting drunken stagger -massive relief to arrive home,total time 2 1/2 hrs.Slept most of Sunday.Might be wise to leave this for a while,methinks!

  • You can do more walking than me then, I only have to walk one mile, about ten minutes, and I am cream crackered :).

  • I suspect you have more to deal with than me Matt-my balance feels pretty good(with eyes open )so its mainly just the spasticity that I have to compensate for : )

  • It sounds as if I do have more to deal with when it comes to my balance. I don't really know the right words to describe it but my balance is like crashing waves. When I walk, I sway to the left and right and my gait is wider, the narrower it is then I lose balance more easily. If I were walking straight and I ended up swaying to the left, I imagine a wave hitting the left side wall of my skull :). I put a lot of conentration into keeping my balance upright, more so when out and about.

    What is the spasticity? Is that to do with being able to see where you are going?

  • You sound like you have to work very hard to maintain balance-must be tiring.Spasticity is a problem with muscle tone-my brain sendsfaulty signals to my muscles which make the tone higher-muscles don't relax like they should but stay partially tensed.So when I move it takes more effort and I get stiff sore muscles quicker than normal ,they pull at my joints and turn my hips/knees/ankles inwards causing pigeon toed walk.The faster you try to move the greater the stiffness-If I try to run they seize up and my knees go down like Groucho Marx.It also causes weakness,hence problems with slopes and steps-you run out of push.This was severe in early recovery but has mellowed out to a more manageable level now.I also have a problem with co contraction-I send signals to all the muscles in my legs instead of just the ones I need to stand up with so they fight against each other-stalemate!I have learned to drop the signals to my legs and push up with my arms when getting up-otherwise I would never get out of a chair! : )

  • So by the sounds of it the muscles in your legs are at eork virtually all thr time, that sounds rough. I think I have a small amount of spasticity in my legs, only I didnt really know the word to use to describe it :). I learnt a new word. I'm not great with a lot of words. I have good days and bad days with the muscles in my legs. Some days when I walk, the muscles might feel like jelly and sometimes the muscles might feel stiff. I had a walk around the area I live in a few weeks ago, my legs were feeling a bit stiff then. I stopped to have a little rest and the muscles eased up a bit.

  • Yea,sounds like you could have some too.Mine is generalised(in arms,torso,legs,slightly worse on right side) but much milder than early on -it was like trying to wade through toffee at first!It has plateaued out for a long while,just feels a bit tight and sore.I have a base level of exercise and if I exceed that then the muscle fatigue bites back-more pain and stiffness followed a few hours later by weakness or jelly legs as you described.Can take a few days to get back to my base level again.I am used to how it works now.I developed a flexor spasm in the right leg-random contraction of muscles that bend my knee and lift my leg off the floor-if I stand with my weight on it it can't lift but only jiggle me about a bit-looks a bit less barmy!The joys of neurology eh?!

    With regards to balance,three things are involved:eyes,ears and brain,you can afford to lose one if the other two are working,its safe to say that my brain bit is not working as I cannot balance if you take away my sight,or I get ear inflammation,I wondered if this is the same for you?

  • I dont usually get ear inflamation if my sight was taken away, i would say it is harder to keep balance if I were to close my eyes. I like to walk in the daylight really as I can see more of what is around me and that helps with balance but at night it's quite difficult, it is a good idea for me to be with someone if I walk in the dark. I could end up walking into things I can't see, like pot holes and so on that could throw me off balance. I don't really like this time of year as it gets dark a lot earlier, thankfully though I don't really go out so much in the evenings. Also with the cold weather, this can bring on icy patches on the paths or roads and as I have a wider gait when I walk, it means stepping on ice, I am more prone to slip up.

    Do you have any of those problems?

  • Hi Matt, ice is not my favourite,it takes more concentration and muscle power to walk on it.My gait is narrower than it used to be but still a bit wider than average-if I try to walk with feet too close my legs crisscross due to the inwards muscle pull and affects balance.So my brain has conveniently worked out the most efficient way to walk and plants my feet further apart and sways my upper body from side to side to compensate.Probably sounds worse than it looks!I have bought some of those stretchy rubber boot ice grips recently for if the weather gets really bad and always carry my fold up stick in my bag in case-I do sometimes pull tendons as they are tighter than normal.

    Regarding vision,I am aware that you have a turned eye which I assume means your eyes can't work together-the brain usually ignores the sight from the bad one so you may not have the depth of perception that two eyes give.My son was born with this-eye turned in and upwards.Had a corrective op on the muscles(age three,he's 22 now) but it started to turn again shortly after.Not quite as much as originally but still turns up and in a bit-kind of makes him look cute and the girls don't seem to mind!Do you have any vision in the bad eye?Hope you don't mind me talking about this-don't want to upset anyone x

  • So your gait is narrower and mine is now wider, sometimes I might waddle like a duck haha. If I stand with my feet together, it feels quite tricky, I sometimes do little exercises to aid balance like striking the heel to the floor when I walk or even doing a little Tai Chi. When I was little, I used to fall off my bike all the time when my Dad would teach me how to ride a bike and even at P.E. at school, I could never walk the balancing beam without aid. Doctors say it was because of my brain tumour, that is located on the brain stem just under the cerabellum, which controls balance, which was why I could never do those things. I got some of those stretchy ice grips one or two years ago, I never really got to use them properly because we haven't had terribly icy weather since. They are there if I need them though, I will just have to remember where I put them haha.

    I can see iut of my right eye but mainly see the surroundings, I cannot really focus on anything. When I close my left eye with my hand, my right eye looks directly at my nose haha. I wish my turned in eye made me look cute and the girls didn't mind, well my Mum might think it makes me look cute. I hate to see it in a photo or something.

    I don't mind at all talking about this and you have not upset anyone :).

  • If weather gets really rough I might have to harness Jess(dog) to a sled !Wonder what I'd be like on skiis....!

    Yea,standing with feet together or heel to toe line walking is tricky.Flexor spasm adds interest-good job I like a challenge!

    You shouldn't worry about your external appearance-its the content of the pages not the book cover that matters.If people can't look beyond an impairment then I can only assume they are shallow and not worth knowing.My partner of 22 years is 20 years older than me,born partially deaf,had a stroke a few years back so has a slightly' mushy' voice and some facial weakness but by Gosh he's a grand lad ,a real character and definately cute in my opinion!There is someone for everyone : )

  • :) I could picture you using your dog to pull you along the snow/ice. You would be like santa or maybe an eskimo :).

    I have always agreed on the 'don't judge a book by its cover' saying but you explained it better with the 'it's the content of the pages' :). You're right, and if they can't look past an impairment then they are shallow or not worth my time :).

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