Does it ever get any better? : Hi, This is my first... - Headway

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Does it ever get any better?

Hon33 profile image

Hi, This is my first time posting and I really don’t know where to start. I suffered a subarachnoid haemorrhage from a ruptured cerebral aneurysm, 3 yrs ago in December past. I had endovascular within 24 hrs if the bleed. I had a really traumatic time having developed severe respiratory complications which resulted in 2 separate resp arrests - 1 in ICU and 1 on the neurosurgical ward - both required re-intubations.

As far as the SAH goes, it took me a long time to realise that I had been left with ongoing issues. I was just so thankful to be alive that I kept telling myself, I was great. I had no real physical deficits apart from fatigue, balance etc but compared to those around me in the neurosurgical award - some of whom never regained consciousness - I was great.

Three years later though, I’m much more aware that things are far from great and I don’t mind telling you that sometimes, I just want my life back. On top of this - I have OCD - I have convinced myself that none of what I am experiencing is real. Rationally, I know you can’t have a major bleed in your brain and it have no effect. At times, though I feel so normal. I feel like I could conquer the world and yet in reality, the fatigue is overwhelming - and the most basic tasks make me so frustrated! I can’t do anything without becoming frustrated and angry - even something like washing my teeth feels like a mammoth task at times because I knock things over or drop things! It’s been 3 years!!

I know things are better than they were 3 years ago. However, I feel like Covid came at such a bad time in my recovery. It kind of put a halt on things and I feel I’m stuck in this perpetual state of limbo where I can’t access my old life but I can’t make a new one. I’m so tired of being tired. I constantly feel like I’m wading through a swamp in the fog.

On top of this, my last MRI a year ago (December 2020) showed slight changes. I was informed of this by letter, together with their plan to do an angiogram this December. Of course, due to Covid that has now been delayed until at least March. However, I am growing increasingly anxious. I’m on a short fuse, temper wise and worried that every outburst of anger, is going to cause my aneurysm to rupture. I’m trying to manage it but I just don’t know how much longer I can cope with not knowing what the changes are.

I’m sorry for such a long post. I just feel so unworthy of feeling concerned for myself. Some of the people I encountered on the neurosurgical wards had much worse outcomes than me. I know I should feel so lucky but sometimes I hate how much my life has changed. I also hate that others don’t seem to understand that it has.

30 Replies

Hi. I am sorry things have been so difficult for you.

Now, this is just my personal point of view, but I don't agree when people are encouraged to think that they shouldn't feel bad because others are worse off than them. To me, that's like someone with a broken leg being told they shouldn't fuss because another guy has two broken legs! It doesn't stop something being difficult and painful just because someone else has worse problems. I am fortunate that I can speak relatively well and I can still drive a car, but that doesn't stop me from finding many others things such as fatigue, memory problems, sensory overload and being unable to work being really hard to live with. Your difficulties are completely valid. You aren't taking anything away from anyone else. You aren't doing anything wrong at all in focusing on your own welfare.

I would suggest that you call the Headway helpline on 0808 800 2244. They will be closed until after the New Year holidays. They are lovely, knowledgeable and caring people. They have helped me many, many times and will be happy to help even if you just want a supportive chat.

I wish you all the best. It's great that you are a part of our community. 🌼

I do sympathise Hon. It's a constant mood game with equal measures of good & bad and, as you stated, with occasional reminders of how fortunate we are to still be here.

As soon as I regained consciousness I was confused as to why hospital staff kept assuring me how lucky I was. (SAH like you ; 10 yrs ago). It all made sense later on after seeing effects on others but, being brutally honest, I don't see myself as 'lucky'.

I guess the fatigue/memory issues/clumsiness/etc..etc.. do get easier to deal with, mainly from practice and acceptance as the years pass. But for me it's loss of good mobility which never gets any easier to accept.

But dipping in and out of this forum brings some relief and comfort when folk on the 'outside' just don't get it. Hang in there m'love and pat yourself on the back for what you achieve each day and forgive what you don't...

Cat x

Hon33 profile image
Hon33 in reply to cat3

Thank you. I suppose the things I mention are only the tip

of the ice berg in the day to day difficulties. I can walk but I can’t go out alone. My balance remains poor so I need to have someone with me. I thought at first, a stick might help make me more independent but then I just kept dropping it and I couldn’t bend over to pick it up. However, on the day I was leaving hospital - 4 weeks after the bleed and severe respiratory complications - the ward physio suggested I could go to Tesco that week and hold on to the trolley? Three years later, I still can’t cope with going to Tesco. It’s too big, I could never deal with physically or mentally.

I can’t drive - I had a seizure at the time of bleed so they said no driving gif a year. Then after six months they took me off the medication which added another six months, on to that. Then I had absence seizures which added another year. Now, they are reducing the medication again which has added another six months.

My cognitive assessment showed impairment in areas such as impulse control and decision making and I’m not sure if I could drive.

I can’t concentrate for very long, my short term memory is shocking, I can’t take on board new information. I can’t seem to finish tasks. I cannot cook without supervision.

On Christmas Day, I tied to help my husband in the kitchen but it just ended in tears. I couldn’t move around the kitchen quickly enough but he was doing everything in the wrong order and not quick enough, bless him. I had to walk away because my frustration builds so quickly, I would just swipe everything to the floor.

I was seen by neuropsychology at the time. However, the rehab consultant is pushing for them to see ne again.

I know I am very lucky but life is so changed.

Friends and even family just don’t understand. My husband and children do a bit. Sometimes I long to get in my car and drive somewhere or even nowhere! I want to jump out of the car and run into the shop for milk or butter.

Instead, everything is just such a performance! Even getting a bath or shower is a drama! Surely after 3 years it still shouldn’t be like this? My consultant says I need to accept it because after three years, this is how life is going to be. I’m convinced it’s like this because I just don’t try hard enough.

It’s like the me that used to be, is buried somewhere inside me and I don’t know how to make her work anymore. When people in a shop or something ask me questions, I just look at them blankly - because even responding takes longer than it should.

However it was just a subarachnoid haemorrhage - people go back to work and get on with their lives but why can I not? My consultant tells me that the majority of people don’t go back to life as it was. I don’t know what to think is normal.

cat3 profile image
cat3 in reply to Hon33

I in no way want to try to minimise your issues Hon but you have described myself and others here to a tee. Losing so many abilities or talents that we once took for granted is heartbreaking for a long, long time and there's no escaping it.

There's no way through or over it so it's a matter of staring it in the face and making peace. I would love to head for the hills and walk all day 'til exhausted but now I walk like a drunk and tire within mins.

In my 'previous' life I would play devil's advocate in conversations just to examine arguments from all sides ; now I can't remember what I was saying 2 minutes ago. I could go on......

But this isn't a competition. I just want to re-emphasise that we can only progress so far as our injured brains will permit. It's good to test our limitations and to have ambition, but pushing too far and stressing is a recipé for burnout - totally counter productive.

Your Xmas dinner preparations sounded very familiar too, especially the part about 'swiping everything to the floor'. That was me once (still is occasionally). But maybe let your husband mess up and learn as he goes while you get the hang of standing back .......and forgiving the chaos. The alternative is unpleasant for everyone.

..........didn't mean for this to turn into a lecture ; you don't need that. I just hope you'll start caring for yourself more and maybe work with your limitations for now rather than despising them ? 😏 See you again soon I hope. Cat x

HiLike Cat and Marnie, I assure you that your feelings are extremely valid.

I had encephalitis 10 years ago and I don’t feel lucky to be alive at times either.

You learn coping mechanisms and find that small improvements happen from time to time.

I know that COVID came along at the wrong time for me I have gained a further 12 kg in weight which I can no longer walk off.

At 70 next birthday I just wait the days away, hoping another 3 months will see the ability to move around more freely without fearing a bout in hospital.

We have all seen ICU and the problems that brings and have no wishes to see it again I am sure.

As Cat does I dip in and out of here,it has been a godsend over the years.

Don’t forget to come back.

J🤗

Thank you. All of you 😊

Hello There, first of all sorry about your hardships in the last few years. I can’t relate to your health issues but I can certainly relate with your OCD. I’m 24 years old and have suffered from ocd my whole life. I have been doing better recently (thank God), the first step to coping with OCD is to understand it. I would suggest to write every ocd thought you have for a while, this will provide you information on what type of ocd you are suffering from. Next step is to go to therapy, seek help from a professional ( it helped me ALOT). Also the last step I would suggest, is to become open about your ocd with your family and friends. Never EVER be quiet about it, share your thoughts with people you trust otherwise your ocd will become worse.

If you have any questions regarding ocd please don’t hesitate to ask!

Thanks, I too have been living with OCD for a very long time. On the whole, I manage it quite well and my family are aware of it too.

It is causing an issue around my perception of my illness but I’ve discussed it with my rehab consultant, which is why he is keen to get me back to neuropsychology.

For the most part, I know the thoughts are irrational. I know they are related to my OCD but I need some help in coming to terms with the fact that what I am feeling in terms of the brain injury, are real.

Thank you for the support.

You have also pretty much described me with my life after subarachnoid haemorrhage but when I was finally able to accept my new life and the new me and learnt how far I could push myself everyday without overloading my brain then I was able to move forward and make the best life with the limitations that I had, I am not able to drive know more because of cognitive impairment issues but although that was difficult for me to accept at first it's a minor issue really, I am now going through another bad time because of a different condition but I can still enjoy each day and be thankful for what I still can do rather than being annoyed about what I can't do. Be kind to yourself and celebrate all the little things that you achieve everyday

Hi Hon33 I thought I was reading my own story, I had SAH in 2017, following my aneurysm rupturing, I had surgery previously with coils and stents but it has always proven unstable, and has been since, did you have coils or clipped for your aneurysm. Anyway despite being told if it ruptured it would be catastrophic, I recovered well even returning to work on reduced hours and responsibilities, life was normal, brain was a bit slower, memory bit poorer, and balance little wobbly. However couple years later I started having mini strokes, they found my aneurysm had grown quite large and was pressing on my brain stem, all my problems were more so I could no longer work, my mobility was poor I had to use a stick for balance and safety, they were saying they were probably at the stage they couldn’t do any more for me, as it would be too risky, and the most they gave me was five years. They would do one last angiogram to check where things were, the night before I collapsed in the shower, the following day at the angiogram it was found I had a blood clot in front of the aneurysm, blocking it off, no blood was entering it. It has remained that way on my scans since, and I am not prepared to ask how long for, I am just accepting that it has, not only has it remained blocked but the aneurysm has actually shrunk, and I am on two yearly scan follow up. So you see Hon, when things feel they can’t get much worse, miracles can and do happen, not always in such dramatic ways, but to survive as we did, was our first miracle you hear of people all the time who had ruptured aneurysms that didn’t survive to hospital, i and my family laugh at my changes, when my brain substitutes it’s own words like I have penguins in the back garden, which is good going for Manchester, don’t tell bird watch, sounds more positive, I have come a long way to accept my abilities I cook, I wash, my family do the rest and I have to accept that, I’m waffling now, please come back for more, lots of luck love Alice xx

Hi Hon, firstly welcome to the community, second, there is never a need to apologise here, we have all experienced some or all of what you are experiencing.

I have read your post and the replies, there is sound advice. It feels like you have bottled up so much for too long. I think many of us know how this feels.

It's good that the rehab team are holding on to you. I know covid has come along at the most inopportune time. It has messed things up big time.

You say about seeing the neuro-psychologist in the past tense. I hope that the door is open to re-engage with them. I would also ask to be referred to the neuro-psychiatrist. No I don't think you are mad, they can help you with mood and the difficulties they are causing, they specialise in people that have experience brain injuries. If you can get on top of your emotions, I feel that this will help you to cope with many of the challenges you are facing.

Cat talks about acceptance, I'd use the term, recognising. Recognising what causes fatigue, recognising that you have to work around this by not trying to push through this come what may. If you are knackered, you are knackered, and need to rest and recharge. You talk of wading through a swamp in a fog, this is because you are fighting the fatigue. I'm not suggesting that you give up on everything that makes you, but that you recognise what is the problem, and put in place measures that help you achieve.

I know that you are facing many challenges at the moment, we are all here for you. 🍀

Hon33 profile image
Hon33 in reply to Pairofboots

So, it’s a bit complicated about the neuropsychologist. I live in Northern Ireland and we have one regional brain injury unit for the whole province. We also only have one neurosurgical unit for the whole province. I saw the neuropsychologist from the brain injury team while I was on the neurosurgical ward.

However, I was being discharged directly to the community without going to the brain injury unit. At the time, the community brain injury team had a waiting list, so the OT referred me to the community stroke team. When I saw the neuro-rehab consultant, he said he would have preferred it has been the brain injury team. That’s to undermine the stroke team of anyone who has had a stroke. I saw their neuropsychologist gif a few weeks but it was very early days after the SAH.

So now, the rehab consultant tried to refer me back to the community brain injury team but they might not take me on because it’s been longer than two years. He says that failing that, his team in the brain injury unit will see me. However, he would prefer I didn’t have to come to the Unit as he thinks it will be very stressful. He suspects that on top of the brain injury i have some kind of PTSD.

I think I mentioned that I had two respiratory arrests during my recovery. One was in ICU, which I don’t remember, and required reintubation and ventilation. The other, took place on the ward and also required reintubation and return to ICU for ventilation. I was there for another week!

However, the problem is that on the ward, the whole situation had been badly managed, resulting ultimately in me arresting. We’ve had some acknowledgement of the situation but it hasn’t really gone far enough.

Anyway, the problem is that the whole situation led to me pushing for discharge earlier than I should have and a total fear of having to go near hospitals at all. That’s basically why the rehab consultant doesn’t want me to have to come to the unit.

As far as neuro-psychiatry goes. I’m not sure they have a neuro-psychiatrist. However, he has referred me back to the community mental health team to have medications etc assessed. He has also reduced my Levetiracetam as he thinks it isn’t really helping my mood.

Sorry for the long response. I tend to ramble.

Pairofboots profile image
Pairofboots in reply to Hon33

Ramble away. It does sound like the consultant has your best interests at heart. There should be a neuro-psychiatrist somewhere in the mix, the generic services have trouble determine what is as a result of brain injury, and if something was there to start with. But either way it sounds like you need a review of your meds. Covid has played havoc with services, so I hope that you can get the right service, the consultant seems to be doing what he can.

TBIX profile image
TBIX in reply to Hon33

Hello Hon,

I’m sorry for what you’ve been through and continue to go through. I too live in Northern Ireland and I supported my daughter through a TBI a few years ago. She was referred to the brain injury unit in Musgrave and also was referred to Cedar, who you may have heard of? They are based in Northern Ireland and support people with brain injury, disabilities and autism. My daughter found it most helpful being referred there - she was assigned a mentor who helped her with getting her life back on track. Life is not the same as before and there are many ongoing issues but Cedar was a great help. Here is a link to they website cedar-foundation.org/

I hope you find it useful,

All the best 🙂

Hon33 profile image
Hon33 in reply to TBIX

Thank you. I will have a look at the link 😊

I'm sorry for what happened to you Hon33. There are clearly a lot of things happening at the same time for you and I can only really talk about the brain injury side of things. I had a severe TBI in 2008. In the first few years I became angry - which was not like me - over things that annoyed me. For me it was mainly noise, so when my husband was emptying the dishwasher I used to kick off on him for banging the dishes. Which he wasn't doing poor thing. You have every right to feel sorry for yourself. Yes, comparing yourself to what you saw around you is totally fair enough - but things have changed for you since your injury and that's okay. It's fine for you to admit that to yourself. I'm constantly comparing myself now to what I was before my injury and I'm trying to accept and realise that I am different and will be permanently. Saying that, my recovery did take a very long time - more than 3 years , so you may find that medically and emotionally things will still change - in small ways as time goes on. Joining in here is a great move - this forum has really helped me over time as you're talking to people who understand and "get it" - you don't need to explain it to us the way you need to, to people who've never had a head injury X

I felt like I was reading my own last 13 months . I to has a subarachnoid haemorrhage after falling 12ft with my head and shoulders taking the Impact . I didn’t need an operation as over a week the bleeding slowed by itself .. I have no memory this time and very little of time after to start with … But I am too sat in a body that isn’t mine , have improved loads in the last 11 months but am lost to where/what the future holds .. im not able to give kind words just you really are not alone … I hope your journey goes well Sue x

Thank you all for taking the time to reply. I do appreciate it. I have so many mixed emotions about even having written this here. It’s good to know people identify.

Thank you.

Hi, painful isn't it. I too am 3+ years into life with a brain injury.

I find it hardest when, on a good day, I can see bits of the person I used to be. I still expect that person to return but she never does.

I'm 52 & "I used to be able to......"

I'm sure life can be sweet again but it's going to take some finding.

Hi Hon

I really emphasise with your frustration. You know in your mind that there are others in a worse state, but that doesn’t mean that it’s easy to cope with your problems-I have a relative who said that to me and it’s helped me not to feel guilty many a time. I have a friend who was a counsellor for years and has said many times, “be kind to yourself, not so unkind, and that has also helped me to wade through my emotions.

Brain damage, of any type, has a big impact on our behaviour and emotions, and if I don’t get enough rest, everything gets on top of me, making it harder to cope and leaving me feeling ‘useless’ and defeated.

It’s now over 11 years since I had a brain abscess and cerebral haemorrhage and I still get very frustrated when I can’t do things-has and does result in my feeling angry and, yes think that only who have brain injury can relate, or someone with specialist training like Headway. It’s well worth thinking about giving then a ring as their counsellors are specifically trained-they’re open between 9am and 5pm Monday to Fridays.

I’ve rung them sometimes and really felt the benefit .

So-be kind to yourself

Get enough rest-despite those who think that shutting your eyes for a few minutes is ‘rest’. They don’t understand the difference between that and mentally switching off-I didn’t before this illness. I had some help from my therapy team and can now rest my mind, but sometimes more easily than others!

I’m constantly expecting too much of myself, so end up feeling a failure-not good, but I still keep doing it🤬😩

Keep going- and don’t give up-you’re worth far more than that in the way you’ve recovered and coped. Sometimes when people can say things like ‘you’re amazing”, I think not at all-you should see me when I’m struggling with frustration-I’m definitely not, but then I have to admit, well it’s been a long hard struggle which you’ve experienced too.

Never give up

Be kind to yourself

Have enough rest

Best wishes to you Hon

Lite75

Im afraid none of us will ever get our old lives back. Covid has changed the world forever. I would suggest focussing on yhe presentmoment.try mindfulness maybe?

Thank you for posting Hon, so sorry to hear what you've gone through. My TBI was a lot milder than yours, you've been through a great deal - but I can relate to a lot of the issues you've mentioned, like fatigue, wanting to be back how I was, coping with supermarkets,lack of concentration, and finishing things. As everyone has said, the Headway helpline, and neuropsychologists and neuropsychiatrists are all great people to get support from - pretty much essential I think, to get coached in coping techniques and get some much needed support in dealing with the new normal.

I don't know if you'd find it too harrowing to read at the moment, or whether the recognition would be welcome - but a mindfulness lecturer, at Bangor university, wrote a very clear diary of her life and thoughts after SAH and her neuropsychologist wrote an excellent commentary on it and on the different impacts of brain injuries, and some coping strategies, as well as incidental notes on each diary section of the book explaining what was happening. Some kind person on here recommended it to me. It's very clearly and simply put. I ordered it from my library and they bought it in for me. It's called 'Mindfulness and stroke - living with brain injury' by Jodie Mardula and Caroline Vaughan.

Keep posting, you'll get lots of support here 😊 x

Hon33 profile image
Hon33 in reply to Painting-girl

Thank you. I will have a look. Even posting here feels a little overwhelming which I suppose let’s me see how much I have actually been avoiding dealing with it all.

Painting-girl profile image
Painting-girl in reply to Hon33

We never have to handle everything at once, whatever you can do is fine. Even posting on here makes me tired sometimes.

Good morning, I'm am also from N. Ireland and am one year post rupture with surgery to insert coils and a web device in another. On return to the ward I had an "episode" where my vision collapsed in, my speech slurred and i went numb down one side and across my face and the nurses thought i was having a massive secondary bleed. Thankfully my emergency CT was clear but they never found out why it happened. it happened a few more times when i got home from hospital. I 100% thought i was on my way out and it's a feeling that is still very much with me. I was treated in the Royal and when i was discharged home my local community stroke team linked in with me. They got me into counselling and also a referral to a neuro psychologist.

My first angio was also scheduled for December 2021 but you know the score already!

I don't know about you but I find people from our part of the country seem to be very unwilling to talk about brain aneurysms and i feel we need to be able to talk to understand it.

I have been left with constant head pain and ocular migraines but feel I'm lucky to have made it this far. i also witnessed a lot of "worse off" cases in the ward at the Royal :-(

i am sorry you feel the way you do but you are not alone. I understand.

L

Hon33 profile image
Hon33 in reply to BooSocks10

Thank you. I’m sorry that you have been through this too. I think the awareness of brain injury in general is low here and that is reflected in the lack of services for people with the condition. I also think because there is only one regional service, it is very stretched. If you don’t actively seek support, you can very easily slip through the net.

When I was told last year that my MRI had revealed changes, I simply got a letter telling me that. I tried phoning the neurovascular nurse but she was on holiday. Maybe it’s my fault for not pushing things but it’s hard to when you know there are people worse off.

I found out last January that I needed the angiogram and obviously the changes were slight or they wouldn’t have scheduled if for December. However, a whole year has passed and I’d really like the reassurance.

However, I’m terrified of needing further treatment. My experience on the ward was not a positive one - not due to the care really, just because of the arrest and stuff. From that perspective, I don’t care if the angiogram is never done even though I’m so anxious that it needs to be.

I mean, they warn you it can need retreated but I just want it to go away.

Again, I’m sorry for being so negative.

BooSocks10 profile image
BooSocks10 in reply to Hon33

Never apologise for how you feel! I'm bloody terrified of the angio and don't care when I get it either to be honest. Our services are stretched to the hilt and I had to push and push to get my first MRI check up. Yes it's also the aftermath of the surgery that terrified me and recovery ( as you know) is hard too.

I try not to think about needing more surgery/repair and that fear will always be there and I understand that it's hard to stay positive but we've made it this far.

I've found this group to be very helpful and there's always someone to listen. I hope that 2022 brings us better health and indeed you never know our paths may cross as "our wee country" is a very small place!

Hon33 profile image
Hon33 in reply to BooSocks10

Thank you so much - and yes, they may well cross 😊

Life can be a bummer for us can't it. I found this helpful. Hope the link works! It was on facebook. l.facebook.com/l.php?u=http...

Thank you so much. What you say makes so much sense and is really helpful. Thank you.

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