Let me start by saying that my partner is brilliant and I am hugely thankful that this recovery isn't happening when I was married as my ex could not remotely have coped with this plus the temptation to injure him would have been overwhelming! SO, I have always enjoyed all 17 years of our relationship, even when we have pretty small, rocky bits, which have always been resolved through calm discussion. There have been some pretty tough times over the years because of my health (something I was never bothered by when I was miserably married) and he has been an absolute rock. Despite those issues, we've also had an awful lot of fun. Therefore it really upsets me that even we are finding this incredibly difficult to cope with.
We don't live together by choice and the only family living within 200 miles is a single (not in a relationship) daughter in her 20s just starting her career, which I don't want to hamper (though I am feeling that she is being less than helpful these days). She was amazing in the first month despite just how frightened she was at what she was seeing happen to me. We have always been very close despite our capacity to seriously irritate each other so I'm finding it difficult to understand why she isn't offering to do some practical stuff once in a while - sort my e-mails maybe, a bit of ironing, making supper, take me shopping or for a coffee/glass of wine. And then I feel awful, like one of those women who think their daughters are meant to look after them, and then it all spirals out of control and I am now shocked at how alienated from her I can feel. She's struggling to accept that (and these are the words of others, paraphrased a lot) ' cool, inspiring, intelligent, friendly, accepting, embarrassing, irritating, kind' mum has disappeared. Whether or not she's disappeared permanently or is just off on a gap year, who knows? ...but the person who is here right now is nowhere near as nice as the one who used to be here.
My sons live too far away to be any practical help though I value their moral support.
His family are all dead so no support there.
My parents are too aged and no other family is in a position to offer practical help.
So because I struggle to get through every day without some kind of assistance, he has become my carer and we both hate it. We thought we could distinguish between being lovers and being carer/ee but I think that's probably not true. The qualities I love about him are what are tiring him out. They are also irritating the hell out of me - how do you express irritation with someone who is the best possible person you can have on your side? That's what I hate about all of this - the way it distorts everything. I want to talk it all through with him because that's what's always been such fun about our relationship but apparently I talk him into the ground. I've lost a level of social awareness or sensitivity. The logic of my own argument is ALWAYS reasonable, even when I can see that it's not.
And if this isn't over-sharing, has anybody else's libido changed? It's not gone, just changed but is it the bleed or all the drugs I'm taking? And does it really matter why or what; it just is.
I saw a bit on another post about not being able to stop yourself and I recognise that. I have been able to reduce it but it's no thanks to anyone else - we had to work it ourselves for the most part but I can't stop it. I also think that if I was him, I'd be packing my bags. I don't think I could stand being around me. There are times when what I see, when I look at myself, is a gobby teenager who's quite bright but lacking in common sense.
Does this ring any bells with anyone else or am I really just a bit of a prima-donna? I just feel very lonely because I barely see anyone apart from him. I've been upset by the number of people who have made no effort to keep in touch. Initially people were asked to keep their distance a bit. Work colleagues were asked to be restrained in terms of quantity of contact but 3 months on there are some upsetting gaps. A tiny handful of people have either seen me or txted me. Others just haven't bothered and that means I'm even more reliant on him, which is lovely but I hate the extent to which it is required. I want to be alone more but I know that going into the city to shop by myself for instance (which I'd quite like to do as I've put on half a stone) is beyond my capabilities. How does anyone else deal with this? I have been out on my own but I can panic, switch off or have to know that one half of the adventure involves help getting there or getting back. I read about the paranoia that some of you experience; at least I've not got that. There are so many difficult things that people are having to put up with on this site. I'm in awe of some people. How come all of this isn't more widely known because there's barely any of it that I knew before it happened to me.
Thank you to everyone who has made it possible for me to write all of this and if you've read it, I appreciate the time you took. I always thought that Mrs Do As You Would Be Done By seemed so much more sensible to emulate than Mrs Be Done By As You Did.
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Twitchy-Legs
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Hi TwitchyLegs, everything you write could haxebeen written by me, the change in libido could be caused by a hormone imbalance courtesy of your bleed or the medication, it's something you need to broach with your GP. I've not been brave enough yet, but it's not been a big problem for us as yet.
I find writing my thoughts in a journal helps, you can have your partner read it if you want but it does help to empty your mind onto paper sometimes. I have a special journal which is just for "letters" to my husband, all my hopes and fears go in there, times he frustrates the hell out of me, if he wants to read them that's ok and it helps him understand what goes on in my mind.
I dislike the life that's been dealt me and I try very hard to emulate the old me but it can be exhausting and frustrating too so I'm also as kind to myself as I can be, it wasn't my fault and I'm learning to cope.
But I'm lonely too, I spend most days amusing myself in various ways waiting for my husband to come from work and he's so tired I don't get the attention I crave but, c'est la vie, could be worse.
I say I spend too much time alone in my head!
I still have a son at home, who is very caring , but I have been careful not to become dependant on him, he is off to university in a few weeks and I'm so excited for him, he took his gcse's while I was in hospital and did so well.
My youngest daughter had finished her uni course and was trying to get a job, I made it out of hospital just in time to attend her graduation, she was adamant at first she should stay spat home but I insisted she got on with her life, she is now in London , we are in Manchester. My eldest daughter plus grandchildren have just spent 5 days with us and I'm exhausted, glad they came but craving the peace and quiet again.
I am so lucky, my life may no longer be the one I thought I would have but I have plenty blessings to count. Believe me I am no saint I can bemoan my fate very vociferously but try not, it's destructive, I want to make the most of my life.
Enough now, it was just to let you know your thoughts are not uncommon, hopefully you will get to grips with them, accept them for what they are, examine amd acknowledge them then let them go and move on. Much love xxxx Janet
Thank you so much Janet. There is a lot in what you've written that I really recognise and it's nice to see the similarities and your positivity. How long is it since your bleed? I managed to make my daughter's graduation too! How do you maintain the positivity - I don't seem to be able to keep it going all the time.
We had space today and we'd agreed he wouldn't stay last night. It was all going really well until he came round and something really stupid happened and I just let rip. However, we managed to talk it through and it's fine, in as much as I know what fine is anymore. What's really frustrating right now is that I know we gained some insight into something to do with something that my brain isn't doing any more, which has some relationship to processing things. I know he knows what it is and that we both agreed it was one of a few things I needed him to say tomorrow at my 3 month check-up but the fact that I need him to do that (and it's clear I can't remember what it was) is really hard to come to terms with.
It's also a shock to realise that something that is so invisible (and certainly for me has left no visible mark) actually has such a profound effect on daily life. I think the libido thing is that I just need a lot of space to stop thinking of him as my carer and to enjoy him as my lover.
Once again, thank you and I hope the positivity continues for you but I do hope some of the rubbish stuff gets better
Hi Ailsa it's two and a half years since my illness which was initially diagnosed as viral encephalitis but the rehab consultant thought it was PRES, either way the results the same, damage to the brain caused by swelling. It's also damaged my optic nerves but only caused loss of peripheral vision on the right hand side and a need for bright light to see well, my night vision is pants.so the usual problems, balance , short term memory , executive function, but not doing badly on the whole.
I don't know why I can remain positive, I suppose it's the little improvements I keep seeing. I just said last week that I'm almost back to me, apart from the physical problems, chronic fatigue, and I can manage that by rest periods and not expecting too much of myself.
I've been lucky to not have a personality problem and I work hard on the executive functions with puzzles and knitting and crochet, I'm determined to still be able to do those things I was looking forward to doing in my retirement.
I miss driving though, relying on public transport puts me off going out, plus trying to walk safely up a moving bus is damn near impossible. And wind, the weather type, can blow me over!
Believe me I'm not positive all the time, I have my moments, but like I say it helps me to write it all down, means I can then move on it's like I've shared it with someone.
I should perhaps read these replies in some sort of sensible order! Anyway, the bus comment made me laugh. I've not driven for years for a host of reasons so I use buses a lot. The first time I went out on a bus was with my daughter and I was going out for a massage, so nice positive reason. Her part time job is nannying and she's very good at it, so she's used to taking care of people and to going on public transport with them.
There is a very steep hill for the last 2 or 3 bus stops prior to me getting off so when you stand up not only do you have to compensate for that upwards slope but there's bus movement (and this particular day the bus was crowded with people standing up). Does she stop to take my hand or check I'm ok? Not a bit of it - she storms off to the front and I'm left calling after her pathetically. Fortunately I was able to laugh it off but it was clear that the caring stuff she knew around children had no relevance to being out with mum!
I realised I'd stayed on here too late last night and it took quite a while to calm down for sleep but at least I slept again!
I meant to comment on the diary. I started keeping one intermittently when I was in hospital and like you I find it really therapeutic but I won't let myself do it as often as I should do. Why I stop myself makes no sense! I did let him see one long entry and it was very helpful so thank you for reminding me about it. I will suggest that we do what you're doing with the 'letters'.
All the best
Ailsa
xxx
I can empathise with a lot of this. I feel very isolated and rejected at the moment. Like you I have felt very let down by all the people who said they would come round, bring me shopping, take me for coffee etc etc. In reality everyone is too busy.
I had moved to a new home and village just 3 wks before my SAH and hadn't had a chance to meet people or connect up. Now I find it really hard, I mean I've started going to the local church, but I have trouble r'mbring whose who, names, and who I spoke to the previous week. I either assume they know something they don't or I repeat myself! And if anyone asks me what I thought of the sermon, I'm in big trouble! I know that I am begininng to withdraw as I feel so stupid and am sick to death of having to explain my sorry state.
I have a daughter in her early 20s who has Aspergers, she has found my illness very hard to deal with. She did come to see me in hospital while I was unconscious, but once I woke up she stopped coming. I tried ringing, texting etc and eventually she admitted she can't handle seeing me like this. It upsets her too much, she doesn't ring often as she says there's no point as I repeat myself or forget what she's told me anyway! I know she can't help it, she just says it how it is. Like you and Janet said I don't want to be dependent on her, or her change her life for me, just a bit of company would be nice!
My eldely parents have tried to visit fortnightly, and chat to me on the phone in between, but I talk too much and tire them out, my Dad has STM loss so doesn't notice mine! But my Mum gets really cross, 'I know you told me already!' So then I stop talking to her as well.
I've gone back to work, just a couple of hours 4 times a wk, and the people who said they would visit etc are all 'Oh how lovely to see you' and I feel like saying 'well you could've seen for the last 3 months if you'd bothered'!! Sorry I am really down at the momemt and feeling very sorry for myself.
Some (but not all ) of my colleagues are being really strange with me, distant, avoiding eye contact etc. I think people just don't know how to react to you when you are different to how you used to be. Also I think people don't realise how bad loneliness can be. This weekend I haven't seen anyone and as you can tell I am feeling very sorry for myself! Sorry I will shut up now
So a very long winded reply of 'no you're not alone twitchy legs'!
oh you poor thing, honestly that's really crap. I'm amazed you're back at work - how come? There's no way I could function for even a couple of hours. I'd either storm off in a sulk, be inappropriately sarcastic or burst into tears at the smallest bit of confusion.
As for your response to some of your colleagues, I have been so bitter about some of mine. I'd actually been signed off work for 6 weeks,with stress, 2 days before the SAH hit so there were quite a few people who knew I'd not been in a good place. What makes me even more bitter is that quite a few of them are meant to have insight into health sociology/psychology!!!
Local church communities can vary enormously but if it's a nice, community minded church you might want to try talking to the vicar/minister; call them and ask if they would visit. If you explain to someone central in a church, it usually gets disseminated downwards and somebody will keep an eye on you. I hope that doesn't sound really infantilising because it's not meant to. However, it does go back a few years to a long involvement I used to have with a local church. We tried to include newcomers and if there was a difficulty, at least there'd be someone with some understanding. However, I'm not in a church community now because the last church I tried, when I moved house, was less than supportive and, as you've found, joining a church post SAH isn't easy.
I hope being on here helps and I really appreciate you sharing your feelings with me. I'm sorry it's been so horrible for you but you have helped me to feel better. Sleep well and I hope this coming week has some nicer moments in it for you.
Big hugs
xxxx
Thanks twitchy legs Life doesn't feel so bad this morning - sorry I was really on a rant yesterday!
I think I am perhaps pushing myself too much with work, but a combination of financial pressures and trying to break my solitary confinement have driven me back!
I hope thing get easier for you too
Best wishes
Sue xx
FIRSTLY I AM SO SORRY THAT YOU ARE HAVING TO DEAL WITH ANY OF THIS. RUBBISH ISN'T IT.
MY BLEED IS FRONTAL/TEMPORAL LOBES & WAS 16 YRS AGO. I COPED WELL WHEN I WAS YOUNGER - I WAY 38 WHEN I HAD IT BUT NOW I'M 55 IT'S A BIT TRICKIER. NEURO SAID THIS WAS COMMON.
MY SISTER HAS NEVER & WILL NEVER GIVE ME SUPPORT. SHE HAS ONLY ASKED ME HOW I AM ONCE ABOUT 4 MONTHS AGO SO I'V WRITTEN HER OFF. NO OTHER FAMILY IN THIS COUNTRY - MOST ARE IN SOUTH AFRICA)
MY PARTNER & I LIVE APART THROUGH CHOICE LIKE YOU BUT HE'S 40 MILES AWAY. HE'S ALWAYS BEEN BRILLIANT EMOTIONAL SUPPORT & PRACTICAL SUPPORT WHEN HE CAN BE. I TELL HIM ALL THE TIME THAT I DON'T TAKE HIM FOR GRANTED, I THINK IT HELPS. MY FRIENDS ARE ALL ROUND THE COUNTRY OR ABROAD. THIS FORUM IS THE BEST SUPPORT I HAVE FOUND FOR FELLOW SUFFERERS, WE ALL LIVE IT DAY TO DAY & KNOW WHAT IT FEELS LIKE.
I CAN'T STOP MYSELF, I PUSH ON TILL I'M BEYOND KNACKERED & PAY WITH HEAD PAIN & EVEN SEIZURES. BRAIN SAYS STOP BODY DOESN'T LISTEN. GET MORE REST I SHOUT AT MYSELF.
YES LIBIDO AFFECTED QUITE BADLY
I CAN'T GO OUT TO BUSY PLACES, CAN'T STAND CROWDS, WORRIED I MAY HAVE A 'FUNNY TURN' I WEAR A MEDICAL BRACELET. I DON'T DRIVE ANY MORE & PANIC THAT I WON'T BE ABLE TO GET HOME IF I START TO FEEL FUNNY. I DO ALL MY SHOPPING ON THE INTERNET.
I AM VERY HAPPY MY OWN COMPANY, I CAN DO WHATI WANT WHEN I WAN'T IF I'M FEELING REALLY AWFUL I DON'T HAVE TO PRETEND I'M OK OR DO WHAT I THINK OTHER PEOPLE WANT ME TO DO.
HOPE THIS ISN'T TOO GARBLED, ICAN'T READ & WRITE VERY WELL TODAY.
Bless you Zeblet. My sister too has been written off even though she lives in this country. She'd like to be involved because it'd make her feel better but it'd be totally negative for me. I wish it were otherwise.
Coming on here and either ranting or sharing calmly seems to be most people's answer. I'm curious to see what is said at my check up today. The main focus seems to be physical healing with no reference to the social effects caused by the varying degrees of damage people have experienced.
Again, thank you and if I could I'd send a collective hug to everyone.
MY SISTER LIVES 18MILES AWAY & BASICALLY IF THINGS AREN'T ABOUT HER SHE'S NOT INTERESTED. I'VE WALKED AWAY COS IT'S BETTER FOR ME. I GET MORE SUPPORT FROM MY FRIEND IN SYDNEY & THE FAMILY IN SOUTH AFRICA.
YOU CAN'T BEAT A GOOD RANT TO PEOPLE WHO UNDERSTAND & DON'T JUDGE!
I HOPE YOUR CHECH UP WENT OK
WHEN I WENT TO MY NEURO RECENTLY I SANG THE PRAISES OF THIS FORUM & MENTIONED IT WOULD BE VERY HELPFUL FOR HIS OTHER BI PATIENTS IF GE GETS ANY, I'M THE ONLY ONE AT THE MOMEN., MOST OF HIS OTHERS ARE PARKINSONS, MS, MOTORNEURONE ETC..
IN THE MOST POLITE & DIPLOMATIC WAY I RECOMMENDED HE HAVE ALOOKAT IT TOO TO GET THE PERSPECTIVE OF WHAT IT IS LIKE TO ACTUALLY LIVE WITH BI FROM SURVIVORS/CARERS ETC.
I'VE BEEN WITH HIM FOR 15 YEARS SO I DON'T THINK HE WAS OFFENDED. HE SAID HE WOULD HAVE A LOOK.
MAYBE THIS WOULD BE AN IDEA FOR ANYONE IF YOU CAN MANAGE IT.
Yes it affected me too greatly. My libido dwindled to nothing. I am not sure whether this was due to just feeling awful, and then when I did feel better I started to have gynae problems. My partner is supportive too but we do like you not live together out of choice. if is any constellation I have a similar issue with my mother. I would like her support just sometimes like your daughter, but nothing. I am not sure whether it is a denial. You must be baffled by this, as you were so close. have you tried talking to her? Or your partner talk to her? I found everybody visits in the first month and then dwindles. I have directly ask my mother if I need help, I can rely on her to Hoover as she loves it, but the rest is left to my partner.
yes our relatio ship has changed and our lifestyle, but we still together and make the best of it. I do not like relying on my partner so much, and when I am fatigued he says it like I am not there, but we enjoy the good times, and BI does improve slowly with time, and I am doing activities I could not do last year. There is hope. Good luck xx
Families don't get it, our daughters are lovely but two years on think everything is fine as dad can out on a great act for short periods and I just get on with things. Work colleagues stop contacting you once you don't go back after a short period, two years is a long time to be away from work, husband has finally agreed he won't be able to go back.
Is there a local headway centre near you for support? We live in the middle of no services but I used the internet a lot and headways leaflets so hubby could read them again and again when he forgot something. That really helped both him and me.
We laugh a lot over the difficulties and mistakes, and I get support from my local carers centre when needed. Hubby and I set small tasks for him to work through, he just finished installing a new shower. With lots of hell from teenager son and it did take four months! The mess drove me nuts but the sense of achievement and confidence boost it gave my wonderful hubby was worth it, plus the shower is great.
Find something you enjoy doing, sewing, knitting, whatever and gain some achievements from that just for you.
It is very hard for all concerned but I have learnt that family love to help, when asked, and be specific about what you need help with and how often. Daughter and hubby were great during a flying visit this weekend moving furniture for us.
thank you once again for sharing your experiences with me. I've been silent for a while because I realised that the effort of typing and reading was really quite tiring. Also, after the check up and my last post, I had a bit of a meltdown and I needed to withdraw to think a bit, and absorb some of the things that people have shared.
The checkup was fine. I saw the specialist nurse, who is lovely and actually does understand the social side (have I said how useless the neuropsychologist has turned out to be? Does anyone else see one and if so what exactly do they do?) and she is going to recommend my GP refers me for counselling to someone who specialises in post-traumatic stress. As a result of that part of the discussion (and my partner was with me so he could chip in), the penny has finally dropped that I really do have a brain injury and that it was all extremely serious. I've been having flashbacks since then to the points in hospital when I thought I was dying or when the pain was so unbearable that I just wanted to die. Some of them are really visceral - I can remember smells and the feel of a jacket or the skin of whoever I was clinging on to. I've even had thoughts come out that I knew were hovering there at the time but I refused to hear them. In the days since discovering this forum and having my check up, I have had awful sobbing sessions and even if I didn't sob, tears would just start falling down my face - hence the suggestion about counselling. I also told her about the website and she knew all about it - not sure why it hadn't been recommended; I think they're not allowed to, which strikes me as bloody stupid.
Anyway, I'm rambling because I've not slept for 2 nights. The 2 days after my check up last week were awful and I'd decided I was telling my partner I wanted a separation. I just wanted to go away somewhere but couldn't think of anywhere that I'd like or could cope with on my own (which was pretty bloody annoying!). I also didn't want to keep on making an effort to keep in touch with people and there is a barrier I can't get past with my daughter (more of that later). The upshot was that I arranged to meet my partner in town after I'd been to the hairdressers and we'd go for a drink and a chat. Originally we were going to do something more fun but I was the one that changed it.
I suppose the outturn of that drink is why I love him and am grateful he came into my life. We talked for hours and he helped me to put together all the pieces that had been whirling around in my head for the past fortnight (a particularly bad spell). I had acquired a good deal more information and this forum had definitely assisted in that. As I said, I finally recognised what had really gone on and realised that from that recognition had to come acceptance. The meditation app I've raved about also helped considerably with being calmer and getting to a place of acceptance. It felt as if a huge weight had been lifted off my shoulders. Last Thursday and Friday were absolutely brilliant and I wasn't snapping at him. Also, I was on my 2 nights without a sleeping tablet and actually slept for nearly 8 hours. I have no idea when that last happened. We also realised that with the cathartic effect of our Wednesday discussion, I'd actually started yawning again. It was only when I started doing it that I realised I'd not done it since before the bleed. And unsurprisingly, my libido returned with a vengeance to something that is much more like normal. I suppose with everything that was going on (and the drugs), it's not surprising that it would change and take a bit of a holiday. I was relieved to discover it wasn't going to be a gap-year!
Another useful thing the nurse got through to me (my partner had tried but I'd dismissed it) was the way in which the mindset that makes me a good academic is really unhelpful for trying to deal with all of this. Again, it relates to accepting things rather than endlessly questioning why.
I've been on here too long today and I need to get some lunch. I am going to have to be an intermittent participant. Those of you who were having bad days when you wrote, I hope you've had something nicer since then. In the absence of people who are physically with us to provide support, it is good to have each other on here.
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) of my colleagues are being really strange with me, distant, avoiding eye contact etc. I think people just don't know how to react to you when you are different to how you used to be. Also I think people don't realise how bad loneliness can be. This weekend I haven't seen anyone and as you can tell I am feeling very sorry for myself! Sorry I will shut up now 
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