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Brain injury blog by survivor

Brain injury blog by survivor



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Brain injury blog by survivor

Brain injury blog by survivor



Brain injury and the debilitating impact of social isolation

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I am writing this during the UK’s official first week of lockdown during the coronavirus pandemic. The country has been asked time and again to stay at home where possible, to slow down the spread of the disease and give the hospitals a better chance to cope with the sudden increase in patients. But after many people have spurned this request, the government and police are now ensuring we do as we’re told. And whilst I completely understand how people are finding this hard to adjust to, I can’t help but think, “welcome to the world of a brain injury survivor.” Although we aren’t fined or arrested for having a social life or trying to go to work, we find ourselves thrown into a totally unexpected situation where we can’t do either. 

People are now having a taste  one element of what we go through.

It’s no exaggeration when I say it’s the debilitating impact of social isolation, and I think the world is only now getting a tiny flavour what us survivors experience. Suddenly where people have often made quips about how nice it is that we don’t have to work and how they’d like some time off, there are internet posts everywhere telling people how to keep themselves busy when stuck at home.  Now the restaurants, bars, cinemas, gyms, sports clubs and just about everything else is shut, people are getting bored and restless. 

Well, this is what it’s like when a brain injury means you can’t drive, and being noise and light sensitive means you can struggle to leave the house at all. And where people might imagine that we can fill our days just sat on the sofa having coffee with a friend each day, this just isn’t the case. After our friends and family have seen we are very much alive after sustaining a brain injury and we have made it home after being in hospital, the sense of urgency relaxes. They have their lives that they need to get back to, and we see less and less of them. Social isolation just seems to creep up on us, it’s not that anyone is intending for it to be that way. Or when we start to see how many mistakes we make, like forgetting names, repeating ourselves over and again, struggling to follow what others are saying, we can feel ashamed and retreat into isolation. Either way, it’s a lonely corner we know all too well. 

Social isolation is actually worse for brain injury survivors than others.

Where as everyone else is just trying to find ways to entertain themselves whilst housebound, the lack of social contact is detrimental to a brain injury survivors’ recovery. It is linked to low self-esteem and mental health issues such as depression and anxiety. These are all problems which survivors are at an increased risk of being affected by anyway, so social isolation just compounds the effect. But then there is the fact that for us to refine the skills that we struggle with as a result of our brain injury, we must practise them. Conversations, reading social cues on others faces, responding to changing situations are all things that people take for granted, but we can suddenly find challenging. But unless we spend time with people, it can be tough getting the vital practise that we need, and thereby holding back our recovery process. 

When this pandemic has passed and the world tries to return to normal, I’d like to think that there will be a greater understanding for what it is like for those who are housebound. But I’m not going to be holding my breath. For people quickly forget when they move on to whatever comes next in their lives. I’m not necessarily asking anyone to do anything differently. Just don’t always assume that whist we might not be rushed off our feet like so much of the modern world is today, that we don’t still have dreams of a different life.  But it would be nice if people would pick up the phone from time to time and check in on us. I know I’ve been guilty of being moody and difficult to talk to at times and put some people off. But it’s not always going to be like that. I manage my emotions much better now than I did originally, so I would ask anyone who hasn’t spoken to a brain injury survivor for a while after getting a curt response to try again. What all of this has to have proven to us all is that the people in our lives are worth more than anything else, so fight for them. 

How debilitating has the impact of social isolation been for you?


16 replies on “Brain injury and the debilitating impact of social isolation”

Yes it does feel like that and I can only hope we all stay safe. Sending you virtual hugs ?

You’ve summed up beautifully my own feelings Michelle. I thought yes, now people will have some understanding of what it’s like to be housebound. But they will as you say soon forget.
With my family at home, I am more relaxed but also less able to get alone time. The house is not my own anymore!
Not being able to shop much is great & made me realise that I over-did that aspect of life. I hope I remember that.
An added stress for me is that things cannot be under my control. When I did last go shopping my scanner stopped working half way through the shop & I had to go the checkout, keeping my distance from those around me, unpack & repack etc. the stress this caused me was bizarre & left me exhausted.
Best wishes to you & everyone during this strangest of times ?

Joanna you are braver than me. I hate supermarket shopping at the best of times, but with the chaos at the moment out there I’m definitely not doing it! Having a make more decisions due to the lack of stock available and extra stressed out people, no way, I can’t cope with that. Instead James is in charge of constantly checking the online retailers for the scarce home delivery slots to keep us in doors.

Still it is very different. Yes other people will have the experience of being housebound, But I am not on devices all day. I do not have the tunes crank. I can not read all day. I can not have movie marathon. I can not run the yard equipment. I can not spring deep clean. I can not go drive to the river or mountains. .. I am not good on the phone. I lose the conversation and find it very exhausting. .. my usual routine is disrupted. Always I order my groceries and supplies online. Now my grocery store is so overwhelmed with orders that I can not get mine in. It make me ask friends to expose them to go shop for me. .. No. I think it is not the same for the generic public.

I totally agree with you Don, just not being able to go to work and seeing friends when we want is only one part of what we go through. And when home technology can’t help because of your brain injury it’s a very different situation. I just hope this offers a chance for people to reflect and pick up the phone now to those who really need that social contact.

At this time of isolation. It isn’t to much different from the life I have been living. I was seeing very few friends to try and make myself get out. Realizing this was good for me but at the same time exhausting. So then I need a day or two ~ to recouperate. I do realize there are times I must push myself and not give up. At the same time knowing I must get some rest in order to be healthy. #staystrong #nevergiveup #taketimetimetorrest #sayingnoisamustattimes.

Dana you put it so well. Yes, it’s the same for me. When I do see friends I am exhausted for a few days afterwards.

Same for me. When friends take me out for a day it takes me two to three days to recover. Folks don’t understand why I can’t go out two days in a row?

I guess it’s nice that they want to see you so much, but it does make it awkward when you have to turn things down and they don’t understand

Thanks Lydia. I’d like to think something good has got to come out of this situation.

Thank you for writing this, it’s so very true. People mostly only see or hear from us on our rare good days so they assume we’re like that all the time when we aren’t, then (as you say) we pay for going out and over-doing it, it’s like a big overdraft: we’ve used up more energy than we have so have to pay it back often for several days afterwards of feeling totally exhausted, wiped-out and in extra pain. Thank you for explaining how hard it can be for us to do things people take for granted (as we did before our brain injury) such as watching a movie, reading a book, cleaning and so on, for me it’s difficult to even get comfy to watch telly, let alone people telling us to do relaxation exercises or meditation = so hard when in constant pain even lying down and no position is comfortable. I do find that doing my art blocks out a lot of pain and worries until I stop & then realise I’ve done too much, still rubbish at pacing myself and can’t relax when I stop anyway! Yes, at the moment I’m feeling even more lonely and cut off than I did before. Well done you for writing all that you do – and so well.

This lockdown has definitely affected me….because hubby is home. He’s a teacher so he’s home during the summers, but by Sept, I need to rest for a month…and for two weeks after Christmas. But in the summer and Christmas break he’s busy with other things. Right now, there’s a bit of outside house work to be done, but he’s got a bad cold (tested negative for Covid-19) so he doesn’t have a lot of energy to get the heck out of the house. He mostly leaves me alone, but before the lockdown he also taught karate 4 evenings and Saturday until mid afternoon….ie: most of the time I had the house to myself. But now that he’s word thinking ability has definitely decreased, I’m hanging onto counters and furniture much more again, and even having a bath is exhausting again. My light and noise sensitivity (especially to tinny/screechy computer webinars that hubby must listen to for work) has ramped up dramatically.
It’s 1:30 pm and I haven’t been able keep my eyes open since I woke up…need a nap today. There’s only so many times I can say to him, with his bad cold, “now you know how I feel everyday.” He’s always been very good to me, but now he’s getting a better feel for what I’ve been going through for 5 years. I do realize now that I can’t pop out the grocery store, only 5 minutes away, that I too was doing too much driving before the lockdown. The last time we got groceries, a couple of weeks ago, hubby drove and that helped soooo much! Stay well everyone. We shall persevere.

It’s amazing how any change to your routine as well as peace and quiet and take it out of you. I hope your husband gets well soon so he can work more in the garden and you both can have your space.

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