Randomphantoms and I decided that we would like to offer any tips/coping strategies/support that we can to fellow BI sufferers, and so decided to start a thread offering just that! I suffered a 'moderately severe' TBI in October 2012 and was lucky enough to receive support from the community neuro rehab team who helped me to come to terms with my BI, and the effects it would have on my life and career. With their help, I was able to return to my job as a staff nurse and the things they taught me have made life much easier. I would like to be able to share these if I can! Randomphantoms and I are aware that not everyone has access to such a team (don't get us started, it's just not fair) and so would like to offer our help if we can.
Just so you are aware of the kind of issues I have suffered (so you know the stuff I received advice on that I can share) - short term memory loss, distraction, reduced concentration, anxiety, PTSD, and fatigue. This all had a massive effect on my self confidence. Nearly 3 years on, I have learned to adapt to the issues that still remain, and my confidence is improving month on month. I am happy to discuss anything that you would like to know about!
Thanks for reading!! Take care
Anna x x x
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amvamp
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I'm 12months into my BI and I've no professional identity any more, no confidence, fatigue is still an issue, depression and now been diagnosed with epilepsy- which has totally blown me away.
My friendships have all but gone.
Thankfully I have a great husband and son at home and a supportive daughter and other family members to keep a smile on my face and love in my heart.
Thankfully I have a great rehab team who I can't thank enough. I wouldn't know how to thank them to be honest.
It's great to hear that you have had the support of a rehab team, and have such a caring husband and family
I have learned that things aren't the same as they were before, but I have figured out that I can adapt and live with those changes. It made me look at life differently; work is not the driving passion that it used to be. People that I work with might find it irritating that I can't function quite as well as I did; I forget things and I'm rubbish at multitasking. But you know what? I don't care. I'm here and I'm fighting.
I guess the point of me saying all this is to let you know that I've been where I was like a painting that had faded, the colours were muted. But you know what? It's taken a while, but those colours are coming back stronger month on month. The painting might be a bit different, but it looks good. You are very early on (frustrating isn't it, how long brain takes!) but you will get through it too. Have hope if you can, and share your worries.
You've hit one of the big nails of bi on the head....the loss of identity and isn't it amazing how big a part of our identity our working life was? That need to feel useful even if paid employment isn't an option at the minute.
Everyone's journey is different. Forcing myself to get out and take part was the best thing I think I've done and led to informal voluntary work and I have just registered with a volunteer centre .
What I'm trying to say is don't worry about work yet there are more important things and as you work on them with your rehab team other bits will slot into place.
I did try earlier to set it up but must have done my usual trick of pressing wrong buttons when I've overdone it and then I convinced myself that it was blocked by headway. Daft I know but I've had a time out now and think I'm ready to participate again.
So pleased that you are joining us in doing this as it's what this site is all about. The more the merrier to offer tips/coping stratagies/support and of course the understanding that you have forgotten. Or do I think myself and many others have been thinking we are doing this but we haven't been able to offer anything helpful??!!
Everyone is really helpful we just thought that one post with all the Tips in one place would be easier than trawling through all the posts to find something when we aren't sure what we're looking for.
To be honest, I didn't even look through previous threads to see if other people had put one out offering similar advice, I just thought I should offer! I'm new to the whole forum thing :/ Everyone offers brilliant advice on here, I am amazed by how everyone chips in when someone posts; I find it so reassuring and comforting to hear from other people who have been through similar experiences. I wanted to share that, and thought a new topic would help other people who are new!!
The fatigue and being 'down' will pass over, and you will get back to finishing off the Volunteering section! If I'm financially able ever to reduce my hours at work, I would like to volunteer for Headway - it's easier to talk to someone who has been through something similar to you, and I would like to help with that.
Concentration and fatigue. To help my concentration, I found that I need to remove distractions as much as possible. For me, those distractions tend to be noise - if I hear a noise I am distracted wondering what is causing it, and loud noises make me jump. So, if I need to concentrate hard, I go somewhere quiet where no one is likely to disturb me. An example of this is at work as a nurse I take a handover of all the patients that I will be looking after - it's where I find out the history of the patients, and what specific care is required. It's really important to work out what to do for the shift. Everyone else has this out on the ward where buzzers are going off, people come up and ask for all kinds of assistance, the phone rings - lots of distractions. So I now ask to have this shut away in a locked room, where I can just sit and listen and make notes. This helps my memory too. I have noticed that other people are doing this too - and they don't have a BI!!
Fatigue is a huge one; and has more of an impact on my day to day life than anything else. In rehab, they talked about 'pacing' and I never really got that. But now, I totally understand. Basically, doing normal everyday things knackers me; and work exhausts me. So I need to spread out my activities over the days; which gives me 'down time' (like now) where I sit at home in the quiet pottering about. And I have one day a week which is a 'rest day' - I don't leave the flat, I don't see anyone, I stay in my pajamas and read or watch tv (well, I only have a computer) and allow my battery to recharge. I tell people that I have a battery like you have on your phone, and it gets drained really fast, and some days I just need to plug in and recharge. One key thing I learned early on is to recognise when I am getting fatigued, and don't fight it, just give in and it passes earlier. An example is I did too much on saturday last week, and went into town on the sunday with my husband. It was busy in town, the lights seemed brighter, the noises louder, and my panic rose. So we went home, I got into bed, and fell asleep instantly for 3 hours. I was able to work the next day without any problems. I work 30 hours a week (4x8hrs) and after work I can't do anything, it's recharge time. It's hard coming to terms with changing your life so much - I was an insanely active person before the accident, was never at home really. But I have got used to it now, and doing all this allows me to see friends on my days off (not my rest day) which I was too exhausted to do before I figured out how to manage. In rehab, they also told me to eat small amounts regularly, and drink plenty of water, as being hungry/dehydrated has an effect on my brain which is working crazily hard. When I'm feeling tired (not fatigued, just a bit knackered) if I have something to eat it often helps. I do hobbies at home now, like painting, so that I can do things in the quiet which doesn't tire me as much. I was an exercise fanatic before the accident, but some times going into town to go to the gym is a bit much, so now have an exercise bike at home. I now have got it to a balance that works - I do a maximum of two days at work (eg mon, tue), then one day off (wed) then I might work friday and sunday - having a job that works 7 days a week probably helps that. I designed a job last year which got funding this year and so was advertised - my dream job. But it was 37.5hrs a week , and the matron wouldn't reduce the working hours, so I couldn't go for it. But I decided that what I have now works, and I didn't want to risk that.
I hope that's helpful; I'll keep thinking and add anything else I might of missed!
My addition, in terms of fatigue, is before you start a big or complicated task. Take a little time to break it down into manageable parts and rest between them.
I find that recipes are less taxing if they are written with the ingredients on one side and instructions on the other.
Just thought of something else. If you are suffering with eye problems and photophobia.
try looking in the RNIB shop site I have got spares of stuff the hospital gave me from there.
Typoscope to make it easier to read and eye protecting sun glasses (mine are the sort that fit over spectacles so the fashion conscious among us may be less interested).
Another top tip is, if you are lucky enough to be driving and have photophobia use matt black tape to cover all the shiny bits inside the car that any sun,when we get it , might reflect off.
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Is it BI or is it just me
Wife of a meningoencephalitis survivor 2014 lonely confused and grieving ☹️
dont want to be a let down.
a year ago tomorrow
