I had my BI 6 years ago now my balance is still not great, I can walk and get about fine but if needing to walk on uneven ground I struggle tho can manage. My mum says I have no motivation which I don’t agree with, but can see why she says it.
If I need to do something I want to do and enjoy doing then 100% I will do it and be there early or on time. If it’s something I’m not bothered over doing my mum keeps on at me and I’m on last minute. My balance seemed to go in this pattern too straigh after my BI I needed physio to walk again which was purely to learn to balance enough to walk. I had physio and managed to walk with walking frame in days and 2-3 week later I was walking normal again. Since then it’s not really improved as I can get through daily life not needing to balance on one leg which I struggle with.
I attend a BI group which I go twice a week or even 3 times if something extra is going on. In summer I asked the man who runs it if he would consider ever giving someone who attends the group a job. He said if one came up he thought would be suitable for anyone then yes. I asked him what he thought I needed to wrk on to be considered in future, he said deciding when something needed doing rather than waiting to be told. This is something I agree with and said I would try to work on it. Well as expected that week and next 1 or 2 weeks I did well. Then I haven’t been pushing myself to keep it up. It’s something I’m not used to doing and can feel uncomfortable. Well I have been thinking this week I would love to walk the 3 Yorkshire peaks with the group. The man who set the group up seems willing to help towards this. We have done a 10 mile hill walk last month, but as he is the only member of staff out of 4 that is keen on this sort of exercise the others have said they don’t want to do any longer walks. Also me struggling more than I expected and even going dizzy 2 mile in and having to sit down didn’t help. I think it was through not eating before the walk as once I ate something I was fine. Now I’m wanting to do more walks and I think providing the man is comfortable everyone will be ok and he has staff to cover the walks he would be willing to do more I think. So I’m thinking next week I mite talk to him about this he has said he will do another same length walk early next year so I’m going to make sure I manage better this time. I am thinking of asking if he would try to get some staff to cover walks like this. If he would that is where I can mention I think I would be suitable and even offer to do voluntary to see how I’d get on. I know something like this I would push myself to do best I could and I think he would know that too.
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keeley24
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its a day to day thing. just because we feel up for it now doesnt mean we ll be up for it when the time comes. one of the after effects of a bi is lethergy..........cant be bothered.
But with me I can say 100% I will want to do things I know I enjoy whenever I can. Like the 10 mile walk that was planned in July for end of September. I knew 100% I wanted to do it and would do it and on day I still felt same. It was harder than I expected but there was no chance at all of me not doing it even when I had to sit down through feeling dizzy everyone but me thought I’d not manage. Woman who works at group later said she thought they would have to force me to go back which I said that is only way I would have ended up going back.
It’s only things I’m not that bothered over I struggle to push myself to do and can manage sometimes like if someone tells me to do something and I do it to show I can. It’s keeping doing the things I’m not bothered over I struggle with.
I understand you. I need to fight myself to do the simplest of tasks. Im able to do it but it feels such hard work - to others it must seem like I’m being lazy!It’s called executive functioning and mine is screwed
My partner survives a hypoxic brain injury following a cardiac arrest last year. We’ve been told it is relatively minor but widespread.
He has no obvious visible physical problems so his difficulties are invisible to most people but they affect his executive function.
One of those is what someone else referred to on this site as “self-starting”. He will do anything I ask him to but won’t initiate a task or activity himself, unless it’s something he enjoys.
This can come across as laziness or disinterest so I can relate to your mother’s frustration.
However I’ve come to learn this is another skill his new brain just finds hard to do.
He’s also lost confidence about doing some activities as he struggles with any that are complicated. These days that means having more than one part to it as he can’t always get them in the right order or remember them all (even if it’s only two things).
So because it’s harder for his new brain I have to work harder first to coax him into taking part with what used to be the simplest of our routine activities.
At the same time I’m encouraging him to use tricks to help him take more responsibility for certain things eg writing in his diary when the bins need putting out for collection each week.
Our community occupational therapy team have explained that he needs to practice routines like these as they have to be relearnt. Then they will come more naturally & be less stressful for him to do, and be less frustrating for me because I won’t have to get him to do them.
Of course the practice is another hard thing he’ll avoid doing so I’ll be supporting him with that but I’m hopeful we’ll get there in the end, one activity at a time.
As a care-giver this has been a massive a learning curve to try & understand how my partner’s new brain works. Headway has been my go to support as they just get it & explain it so well. Hearing survivor experiences on this site has also given me so much insight & patience. So I’d encourage you & your Mum to look them up regularly.
As I am fine doing things I want to do and enjoy I’ve come up with an idea which I’m going to talk about with man who runs BI group I go to next week. I’m thinking I could organise activities or things for group to do at social time also would like to help plan outings and things as I enjoy them and would like to be more involved.
This will lead onto talking about 2 things I want to do that may or may not happen. First is a Santa dash 5k run or walk. A few of us did one last December and I would like to again as this year I have had to stop any running as I’m on benefits it could effect. This Santa dash will be ok as it can be walked. Also as I know the man doesn’t want to keep hearing about things like this I’m going to add a bit about doing it to raise money for the charity he runs. The other thing is 10 mile hill walk he’s said he will do another of next year I’m thinking as I enjoyed the one this year could make it a yearly thing in July which will be anniversary of my BI and my birthday also to raise money for the charity. Me helping plan outings will give me chance to discuss the walks and possibly doing longer ones at some point.
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