Newbie saying hi ;)

[Chica68]

Hi all new to the group ,struggling with lock down post sub arachnoid haemorrhage 2 years ago! How is everyone doing?

[Irmina1983]

Hi Chica69. I would say I’m the same. Had my aneurysm 2 years ago. Struggling as well. But I think we just have to do our best and hope soon things will back to normal.

[Chica68 in reply to Irmina1983]

Hi Irmina,good to meet you,thanks for responding🙂I realised after my chat with Cat I came across as being depressed and I'm really not ! I'm so grateful to be here and be as well as I am.Ive just got a lot going on at the moment my poor mum,whom I am very close to has been admitted to an assessment centre for dementia so I'm in the process of trying to get her a flat sorted so she can move in asap ,shes struggling with se

[Chica68 in reply to Chica68]

Seld isolating ( hadnt finished the message didnt know how to extend the space lol I'm a dinosaur!) Anyway back to my tale getting new carpets fitted during a pandemic is a challenge but they are coming on Thursday so it's coming together!

[Chica68 in reply to Chica68]

My mom has been so stressed as my brother was diagnosed with Nk cell lymphoma and passed away last year age 53

[Chica68 in reply to Chica68]

I feel the stress of both me and my bro has made my mums condition much worse prior to all this she was just forgetful!

[Chica68 in reply to Chica68]

How do I extend the message space if I've not finished the message? Ta in advance xx

[cat3]

Welcome Chica. We're all struggling with the isolating effects of Covid right now, but feel free to come and chat here anytime.

My SAH is 9 years behind me now so I feel I've progressed pretty much as far I'm going to. I still have balance and memory issues but nothing I can't manage. At the 2 year stage I guess you'll have learned most of the tricks for managing the various after-effects. There's still plenty of scope for further progress for you, but which issues do you find the most challenging at this stage ? Cat x

[Chica68 in reply to cat3]

Hi thanks for your message ,I'm mainly struggling with fatigue and insomnia,which makescthe tiredness worse ,I've recently been told I'm menopausal as well so have started HRT but think that is playing havoc .From the SAH point of view my consultant says I'm doing really well,but I have some good and some bad days ! Do you still have that? I'm wondering if I could join a gym at some point but would that be unwise ? Also from the SAH point of view are we classed as being vulnerable for covid vaccination purposes? I've asked my gp but he doesn't seem to know! I'm in a bubble with my dad at the moment so am relatively safe but would like to get vaccinated as soon as possible as last year I had a set back with my shunt,it stopped working in march 2020 so I went in for a replacement and was told a few days and ide be home ,it was three months of rehab again after the replacement as I unfortunately got an infection and was very poorly again,as that's not yet 12 months ago I'm worried about getting I'll again ,Sorry for the long message, thanks in advance

[cat3 in reply to Chica68]

I used HRT for many years and found it a great benefit to both physical and mental wellbeing and I remember it took a couple of weeks to assimilate. To answer your question whether I still have good days since my brain injury the answer is yes, but as time passes, we seem to treat the new challenges as something to manage and adapt to, rather than to fight against, and my bad days are many fewer.

The fatigue was a major problem in the early days 'til I started taking the advice of doctors and Headway, and I began resting more throughout the day and walking away from stressful situations. Being more open about issues rather than pretending we're coping when we're not can really take the pressure off ; took me too long to get to that point.

And I try to walk out every other day to maintain fitness (not always easy when trying to socially distance I know).

I've posted a Headway link giving information on suitability of the Covid vaccine here :-

headway.org.uk/supporting-y...

I've also been nervous about the vaccine but after speaking with my GP and researching it on reputable sites online I'm pretty reassured now. I don't believe a brain injury alone puts us in a vulnerable category where the vaccine is concerned ; it's more about other issues such as personal allergies or other conditions.

You do seem quite down m'love ; I think we're all struggling with the present state of the world ; it does feel pretty surreal. So I hope you'll continue posting here Chica ......Headway has been a true lifeline for me for many years and it's where I come for the reassurance of being amongst friends who 'get' me.... Love Cat x

[Chica68 in reply to cat3]

Thank you so much 😘😘I appreciate the advice and support Xx

[Chica68 in reply to cat3]

Hi I realised after our chat yesterday a lot of my problems are psychological not physical,I think I need to work on accepting the new me,and my new life ,thankfully I've got lots of support ,but you've been really helpful so Thankyou 😘😘

[cat3 in reply to Chica68]

Thanks for your kind words ; it's good that you're turning a corner.... stay in touch ! 😏x

[Chica68 in reply to cat3]

Will do,have a good weekend ! Thank you 👍

[bigfriendlyguy09]

Hi my name is Simon Mountford I am a 53 year old male that was born with a Super Arachnoid Cyst and clinically died twice in 1976, which has caused me nothing but problems.I have had over 37 jobs in 32 years and at the moment I am UNEMPLOYED once again, So I can empathise with people that have these conditions.

Having a HIDDEN Disability is a reason for people to discriminate against you and also you get very little help under the TWO TICK SYMBOL so I would not rely on what it was supposed Help people with Disabilities.

So I now do a lot of Voluntary work that helps me to be part of the Community that I live in. ([e-mail]).

[Painting-girl]

Hello Chica, and welcome, sorry you're struggling with lockdown, always a listening ear on here though 😊 x

[Chica68 in reply to Painting-girl]

Many thanks 🙂

[Chica68 in reply to Painting-girl]

Hi painting girl how are you doing ? 😘😘

[Painting-girl in reply to Chica68]

Hi Chica - better than I was thanks, after the fall last week ...bruises fading, and face and hand not so swollen today. I'm also getting quite good at doing stuff with my left hand (probably helped by realising how much it hurts when I use my right hand to pick things up 😂)

How are you?

I read your chat with Cat, I think it's fair to say we all struggle to a greater or lesser extent with the way our lives changed suddenly. I've seen a psychologist and then a neuropsychologist fairly continously (for a bit under two years) to first work out what my usual coping strategies are in a life crisis ( and whether they are helpful now) and to develop new strategies to manage now. ( I also did a mindfulness course early on - I'm really enthusiastic about these MBSR courses have you looked at those?) Then I did a lot of work with the psychologists and the physio, with input from the neuropsychiatrist, on strategies to manage my fatigue.

Even then, managing my fatigue only really paid off early in lockdown, as I hadn't realised that (for me, now) I was still doing too much, and so was constantly fatigued. It was a relief to feel 'normal' again, even in short spurts. The next challenge for me is to find the right amount of exercise during the week to stay fit, without triggering the ubiquitous 'post exertional malaise'.

The risk of reducing down your activity levels to avoid fatigue (a quite natural reaction) is that your muscles and you become 'de-conditioned' so you get more tired more easily - a sort of vicious circle,

By the way, I hope HRT works out for you - do you have the patches? It can sometimes help with the fatigue I believe?

Jen 🌸 x

[Chica68 in reply to Painting-girl]

Hello 🙂thanks for your response, what's an MBSR course? I do feel that my body is coping quite well and I'm good now at recognising if I'm doing too much.im just really not good at relaxing and sleeping, which has a knock on effect,! What do you do to turn your thoughts off? I'm awake at 4 am most days 🙄🙄xx

[Painting-girl in reply to Chica68]

Hi Chica, I think a lot of us here have trouble sleeping, me included. It can seem like my off-switch has gone entirely missing some nights. I think I'm more sleepless on the days that I've got more fatigued - the better I manage my fatigue levels in the day, the better I sleep that night - though that said, of course it's easier said than done!😊 Don't forget to break before you get fatigued - such a tricky one to manage.

Mindfulness /meditation works for me to help 'shut down' for breaks during the day. Have you ever tried the free content on the Headspace app? I've also noticed that my blood pressure goes down after even a short (3-5 minute) session, which makes it seem a practical step to me. I haven't been able to cope with any visualisation meditation (walking along a beach stuff) since my TBI - but the basic breathing exercise type meditation they do on Headspace works for me.

MBSR - mindfulness based stress reduction courses - certainly helps to live in the present and stay focused. I think it's been found to help brain plasticity too. Some local authorities offer the courses free, and there's a lot of them running online now.

Jen 🌸

[Chica68 in reply to Painting-girl]

Thank you sounds good I'll have a look at those 🙂anything that will help me switch off would be a positive Thank you take care 😘😘

[Painting-girl in reply to Chica68]

You're very welcome Chica 😊 The neuropsychologist that did my testing recommended doing an MBSR course, and it, and the Headspace app, really helped me to manage the constant headache.

The chap who started it all was Jon Kabat-Zinn if you want to look into it. My library is doing 'click and collect' so I'm ordering a lot of books for free at the moment 😊. Someone on here recommended ' mindfulness and stroke - a personal story of managing brain injury' by Jody Mardula and Frances L Vaughan - and the local library service actually bought the book in so that I could borrow it - I was quite impressed!

Let us know how you get on - perhaps start off a sleep thread here?

Jen 🌸 x

[Ba5555]

Hi iam new too had a brain injury 4 years ago struggle with memory balance and fatigue

[Chica68 in reply to Ba5555]

Hi goid to talk ,It sounds like we all have similar issues 🙄 with lockdown it's even harder ! Take care

[Painting-girl in reply to Ba5555]

Welcome to the forum Ba. Really sorry to hear this and to read your bio. Sounds rough. What I was saying to Chica was that one of our natural responses to fatigue is to do less, and so we get physically deconditioned, which increases fatigue. So the answer is to start slowly and gradually build up what you can do in a day within your limits.

The other thing to do is to realise that cognitive and physical fatigue can be bi-directional - so you can be fatigued physically, and it will have a knock-on effect on your cognitive fatigue - and vice versa.

I find I can do more physical tasks than cognitive stuff in the day - but that's just me.

Do you have a regular pattern of rest breaks ( eyes shut, laying down) during the day? It really does help me.

Jen 🌸

[Headshrink]

Hi and welcome,I am in a similar position and have gone from confinement dt brain injury to confinement due to covid so pretty much more of the same. The one huge bonus is that I have been able to focus on my rehab efforts and am now able to wiggle my fingers a bit and wear a glove on my affected hand which is helpful in winter!So in many respects this has been a blessing in disguise-I have learned to focus on the positives no matter how miniscule as this is the only thing to keep us all going, good luck

[Chica68 in reply to Headshrink]

Good luck with your rehab and take care here to talk anytime 🙂

[Superwoman2020]

I personally had a S A H back 9th June 2018,taking each day as it comes,I wouldn’t say I’m good or not,just surviving

[Superwoman2020]

Blackheath brain injury rehabilitation centre is a god send to me,thanks to them,family and my determination,I re-learnt to walk/talk

[Chica68 in reply to Superwoman2020]

Hi yes the rehab is pretty awesome thankfully 🙂I recovered well after SAH in oct 2018,then had a set back with my shunt packing in March 2020 so another 3 months rehab and learning to walk again ! But here we are onwards and upwards 😘😘will just be glad when covid is sorted ,the isolating doesn't help xx

[Chica68]

That was rather insensitive ! I had been a midwife since age 21I ,loved my job.I decided to take early retirement in oct 2019 12 months after my SAH as I knew I wasnt well enough to do it well,and I can't drive.I may at some point but have to apply 12 months post shunt replacement so March this year fingers crossed xx