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Hello - I'm Yoyo, a Newbie to this site


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Hi everyone, my name is Yoyo.  I'm new to this site.  Its taken me ages to register, get a password and log in.  I find when I get stuck I become all agitated and end up crying and feeling useless.  I have of weeks now been reading the site and its been helpful to me.  I hope I have not messed up my login now.  I look forward to connecting with people on this site.

 

At times I feel so lonely and I find I sometimes always cry at the slightest thing, especially if I make a mistake.  I don't know if this will ever get better, I hope to get some clarity from joining this sight.  I am sure Ill get support from people who understand how Im feeling.  I am so sorry if I am not making any sense and sorry for typos, everything is so difficult at the moment. I hope with time I will get better at this.  I really do.  Apologies if I am am rambling on.  I seem to have lost so much confidence will it get better?  

 

Apologies this is what I mean I keep forgetting things.  The reason I'm on site.  I had my SAH in December 2015.  I feel my world has been shattered.  I wonder will the feeling of total loss every leave me.  I would be grateful for any advice anyone can give me.  This whole episode has put such a strain on my relationship.  I am scared things will be damaged forever I don't know where to turn.  I thought joining this sight might help me and give me a focus.  Sorry for the rambling on. 

 

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Welcome to btg 

This site as helped me loads and there is lots of lovely people here who I am sure will help you are not alone sorry I am not much help but I am hopeless when it comes to thing like this I get scared in case I say the wrong thing I also cry a lot and sometimes for no reason I had my sah on the 23rd of January at the age of 40 x

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Hi Aandrea, thanks for your reply.  I re-read my post and yet again I made so many errors.  This upsets me.  Whenever I do things wrong I become very upset.  I know this is due to the aftereffects of my SAH.  I forgot to had information about my self.  

 

Apologies to here goes.  I had my SAH at the beginning of December 2015.  I was in hospital for a while being discharge in the following April 2016 just before Easter.  I feel my world has been devastated.  I was always such a ordered, controlled person.

 

The job I had meant I also needed to have my wits about me.  I now feel so very lost, so very alone and useless.  The pressure has been enormous on my relationship with my partner.  It seems as I am getting better he now can relax I guess and boy has the impact come flooding in.  I'm wondering if others can tell me is it normal to have such an impact on ones relationship.  Its a silly question I know, and I can only assume it does have an impact on ones relationship.

 

 I am physically getting better, but emotionally I am really finding it hard.  I am anxious my relationship is in difficulty.  My husband has been a tower of strength to me, but it seems as I get better he now is finding it hard to carry on.  I would be grateful for any advice  anyone can give.  Maybe others will be able to shed some light on the difficulties this has on ones relationship.  Will things improve or at least become easy to manage, will my endless feeling of sadness ever lighten.  

 

I am so thankful for finding this site.  This is the first time I have been able to stand being on a computer for any length of time, but I am relieved to have joined up with btg.

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Hey Yoyo,

First - welcome to BTG!

 

Nobody is going to, or wants to, judge you for making mistakes - we all do it - this is mistake city and nobody cares about that.  We do care about you and your wellbeing.  They always say that to know how you're feeling we should all walk a mile in your shoes!

 

Well, Yoyo, we have walked that mile, and more.  Many of us have had these 'problems.'  How we deal with them though is very different because we are all individuals, with different likes, dislikes, outlooks on life and so on.  But we all recognise what you are going through.

 

You are not useless, and you are not alone.  Your husband is with you and we are here for you now, too.  You are only eighteen months into this and brains take a long time to recover.  They're not like any other part of the body and are a law unto themselves and won't be told what to do.  In fact, it will tell you when your body has had enough and wants you to rest.  And it will keep on doing that until you get better, which you will, over time.

 

You've taken a short sharp rap (SAH), that has long term effects, and it has thrust change upon you abruptly, that normally would have happened gradually over a long period.  How you now deal with it is what counts.  You have to try now to think rationally, and not emotionally, about how you are going to combat this condition.  It's not easy at first because SAH carries an emotional payload that is hard to shake off, nobody knows that more than me.  Yes, you will be emotional at times, but when you are more able to think clearly, is when to should plan your response.

 

That must happen in your own time, no-one else's, when you are ready.  And you can do it little by little.  So carry a diary, a notebook and start to write things down.   Use the notebook/diary as your memory bank as a kind of temporary substitute for your brain.  Let them take the strain off you a little bit.  Take regular breaks, and don't try intense concentration for long periods.  Do it in short bursts - then rest.  Stay hydrated, this usually helps minimise the effect of headaches.

 

Try and start to do somethings for yourself, independently and see them as stepping stones and achievements towards better things.

 

As for your relationship, the best thing you can do with your husband is to talk to him about the effect the SAH has had on you.  What are your hopes and fears?  How can he help you? 

And then let him speak and tell you the same things form his point of view.  Importantly, don't cut him off, mid sentence by getting all defensive.  What you need is a frank admission of all these things and then together - I'll repeat that - together - you can work out a joint plan of how things are going to be tackled.

 

This can actually draw you together more.  Has he felt left out, have you told him how you truly feel and vice versa?  He has stayed with you this far, why wouldn't he see the battle through until the war is won?

 

You say you don't know where to turn.  Turn to your husband, and let him in, to help you deal with these issues.  You can both get through this.

 

Brain injuries aren't easy to deal with, nobody says life will be easy.  Yes, some things may change from the way they were before, but they are just different, not better or worse.  It's how you view them that is important.  Look forward, not back.

 

Learn from the past, don't dwell on it or live your current life through it.

 

Talk, talk, talk!  And don't forget to keep posting on here.  We are here for you too, typos or not (they don't matter so don't worry about them).

 

Macca

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Hi Yoyo,

 

I send prayers for you and hope you can find peace soon.  It's a struggle to heal and it takes time and patience, by you and your support group.  I hope you continue to improve.  You will have good days and bad days, but the trend should be up over time.  Please hang in there.  You are a survivor!

 

Chris

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  • Skippy changed the title to Hello - I'm Yoyo, a Newbie to this sight

Hey Yoyo , well done for having the courage to post and join the group and it does take courage to put yourself out there and admit that things feel broken and that you weren't as you are, that's a huge deal but we , as Macca says so well, know that feeling, have had those fears and together we are stronger.

 

First, and this is for you too Andrea, it's ok to be a little lost but when feeling that way offer yourself some kindness and generosity and self compassion the same as you would for others for what you are having to learn and adapt to. It's a big deal and no easy path. 

 

The SAH arrive with the force of a hurricane, each of ours unique, no one knows the path or the destruction it wreaks  as of course that is as unique as the person we were before. One thing we share though  is the brain we had before altered in that moment, it can never be exactly the same as before so change will be your constant as you find new boundaries that weren't there previously.  

 

Yes some people make ' full' recoveries and in that I read that they manage to reclaim their previous pace and style of living but many of us have no choice but relearn to do things, to learn the new ways that work for us now, find the new pace, and that takes time to adapt, to adjust. But it gets better with time.

 

 Whilst we are exploring this new operating brain of ours that our partners also are adjusting to the fact that this other person who was oh so capable before their bleed may not be able to do all they did , may never do it and whilst torn between wanting to protect you and keep you safe they also have a loss to deal with as that plan of your life and how it was going changed is gone and a new plan is to be made,

 

So great advice already. Talk if you can. Love makes that harder and easier. Easier because you want to lift each other up and harder because neither of you wing to hurt one another. But come together, lean in not out and it's the step towards getting this new future inked out together. 

 

I was 39 when I had mine. My life today is very different to that previously but Five years on My aspiration and ambitions have shifted to take the reality of my new state but I remain curious about possibility and I find happy in the smallest of things. The two year mark was the  hardest to be honest , I realised I was trying so hard to force myself to get back to what I was I was losing sight of what and where I wanted to be. So I focussed just on taking each day, celebrating the little and big victories and sitting out the storms each time they hit.  It's a change in pace and you'll find yours. 

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Thank you all for the wonderful, thoughtful, kind and informative words.  I don't feel I am the only one feeling like this.  I totally expect any relationship would be hit hard with what has happened.  I just felt alone and a scared of everything being over.  I have to be brave enough to give my husband time to heal I guess.  I think the impact on him has been immense.

 

I think if I'm honest its truly hit him harder than I realised.  He had to be strong all through the time I was in hospital.  Being told that things where on a knife edge etc etc.  I can only hope things will improve for us.  I find however my patience is tested and I don't know if this is normal.  I think I am looking to the physical side of things for reassurance that we are ok.  As this is not happening it creates more anxieties and doubt for me.

 

I will try and somehow dampen down the anxieties and hope that things, as I become more independent, our relationship will get firmer, if not stronger and we once again I hope be husband and wife fully.  Its very hard, and I guess I sound selfish and uncaring but I truly am not.  I am grateful for all he has done for me, he has looked after me.  I notice as I get better he seems to get worse. It's as if my getting better has allowed him to collapse from the strain of it all.  Am I right?

 

I know no one can predict if things will improve for me and I guess I am just looking for certainty which I know at the same time I can't have!  Do marriages/relationships come through this awfulness?.  I find I am so scared at times of thinking it will all be over.

 

Sorry for going on.  I also scared if I'm honest of anyone showing me any kindness and interpreting that.  I feel so needy and at times so alone.  Then I think of others who really are in a worse situation than me and I then am angry with myself for being so selfish and uncaring.  Its like a vicious circle at times.  I hope at some point I will step off of this awful merry-go-round.

 

I know my marriage will never be exactly as it was before the SAH, but I hope it will be better than it is at the moment.  I hope we can be close again.  I'm not sure how long I can hold out as I feel so alone at times.  I think I need to pluck up courage to go to the support group.  Trouble is, it only meets once a month, but maybe that's a start.

 

I feel I'm asking so many questions and answering them at the same time.  I'm sorry to be such a pain.  Thank you all of you for you advice and support it is so appreciated.  I am going to try and be positive.  I think I might even dare to bring this up with my therapist!!

 

I must be brave.  Thank you all.

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Yoyo Hi,

 

My Daughter found this site and it helped her as she didn't like asking her Dad all the time ie "Dad will Mum get better".  He'd say "of course but when" ? 

 

I came on here and was not alone anymore, there was others who laughed and joked about their bleeds etc.  Made me feel like "Oh there is life after an SAH"

 

It is hard for our loved ones and I cry or want to shout at hubby or Daughter, but it isn't their fault or ours this happened.  It happened and I try not to stress and I sing instead.

 

You will make it as you have survived xx  Now take hubby out for a coffee weekend and keep your happiest face on if possible.  Things do get better as time goes on ! 

 

We leave the hospital our short term memory shot, and we are told nothing about it and if I was told I'd forget it. 

Now wipe those tears away and try a smile instead when possible xx  Good luck xxxx

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Hi Yoyo

 

I am sure things will get better with time. Your partner is probably scared. Scared that any intimate activity will be too much for you. Have you tried talking to him about this aspect of your recovery? It is known that some people suffer a SAH whilst having sex. With the advent of the internet and access for all to any information you want in an instant, maybe your partner has read this fact and is worried.

 

My husband really looked after me after my bleed and I feel the event has actually brought us closer. But it is a traumatic event for them that takes time to get over. We were lying in a hospital bed oblivious to everything while they were having to deal with the emotional fall out. I always think that at the time it must have been much worse for the family.

 

Hang in there and yes, join that support group. Talking is the best healer and if it's only once a month come here and talk too, we're here all the time.

 

Clare xx

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On 7/18/2017 at 22:43, Macca said:

As for your relationship, the best thing you can do with your husband is to talk to him about the effect the SAH has had on you.  What are your hopes and fears?  How can he help you? 

And then let him speak and tell you the same things form his point of view.  Importantly, don't cut him off, mid sentence by getting all defensive.  What you need is a frank admission of all these things and then together - I'll repeat that - together - you can work out a joint plan of how things are going to be tackled.

 

Hello Yoyo, many thanks for continuing to share your anxieties. It is clear from your comments that you are desperate for your relationship to work following your SAH.

 

Our members are urging you to talk it over with your husband and maybe you are even afraid and already presupposing that the outcome of such a discussion may not be what you hope for.

 

The content of your latest post is ideal for moving forward with your husband. It tells him exactly what your anxieties are.

 

Is he aware of this site?  There is so much within BTG that would help him too.

 

As has already been said, SAH does have a major effect on relationships.

It poses different obstacles depending on the severity of the SAH and it`s after effects;  and also depending on the strength of the relationship that existed before SAH.

 

For example, seeing a partner become disabled and no longer able to function as they used to, is so hard. It may take months or even longer before you can consider returning to work, and even then a new set of issues arise.  Often full time work is no longer a reality.

In addition, SAH may have changed your personality (often this can be temporary and certainly can improve with time). It is not easy to cope with a loved one who seems no longer able to control emotions such as irritability)

 

A bleed can often damage the area of the brain that allows you to take that few extra seconds to evaluate a situation before you comment or react. Now you may say it as you see it without thinking that your actions or words may be hurtful.

Your husband may well be confused and uncertain about what the future holds for your relationship

 

Also, from what you say, it appears that you want the relationship to be more physical. Often, due to post SAH issues such as fatigue and low libido and just physical weakness, it is the partner who feels left out of a physical relationship.

 

You have everything to gain by showing your husband that you care about what happens to you both ... you cannot give any guarantees about the extent of your recovery, but you want to do your best to build the future together.

 

I do hope that you can both take that step to share your feelings and find a way to help each other deal with what SAH has done to your relationship.

 

 

 

 

Subs

 

 

 

 

 

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One thing to add, no marriage is perfect, it's a partnership that requires effort and work and sometimes it can be completely out of kilter so you're not being a pain actually you're being very honest and brace. 

 

The SAH really throws a spanner into the Worksop our predictable patterns,, we, who have the bleed don't quite operate the same way any more and the partner had to witness that loss and shoulder the burden of all the worry , caring and taking on everything, so basically both worlds and routines are rocked in similar but also very different ways.  Sex is hard to talk about sometimes. My libido was non existent post SAh and to be honest I had no physical energy for nearly a year afterwards and he was scared for me too.

 

I can't tell you things are back to where they were previously because they are not but we our relationship is different now, I'm different now but we talked throughout and made sure we kept up some levels of physical intimacy and caring and sharing contact even if that's just little touches.. Let him know what you need , ask him? Request hugs and offer and give him hugs too and both make more of an effort, baby steps to rebuilding that confidence.

 

I guess that's what I meant by lean in to each other. You both feel fragile and a little broken right now but together you are stronger. 

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  • Skippy changed the title to Hello - I'm Yoyo, a Newbie to this site

Thank you, thank you all so very very much for your kind words and words of advise.  I thought I was having a better day today, but not so.  I notice I can't take sudden changes in anything.  I have a complete meltdown and end up exhausted with crying constantly.

 

It's hard because I sometimes feel that because I have no physical obvious effects, those around me expect me to be as i was before. When there is a change in any event I seem not to be able to take on the change immediately and go into complete meltdown.  This is so unlike me, I was always do organised and the job I did needed me to always be controlled and no what I was doing.  

 

I more often than not was the one doing the supporting at work, thus needed to remain in control.  My job involved some very awful things so even more's the need for me to be controlled to be able to support others.  I am finding this relying on others so very very difficult.  At times I think how can I continue living like this, then I pull myself together or try to.  

 

Today was one of those not in control days, I completely lost it over a what was a minor change.  I have never ever been like this in my life.  I feel so very useless and it feels at times hopeless.  I don't mean to be so negative.  I just hope things will improve.  I am trying to keep positive, you all for your wise words of advice.  

 

I understand my husband will have and is going through a difficult time, I hope things will improve for us both.  I guess I just have to go day by day, bit by bit.  I cannot believe how knocked I am by all that has happened to me.  Sorry to keep saying these negative things.  

 

Thank you all for you kind words.  I sometimes, in fact most of the time feel I am not going forward but that I am stuck.  I have to shake this sadness off.  I having CBT therapy into the 2nd week only.  I guess its too early to say if its working for me, I think I get 8 sessions on the NHS.  I am wondering if its best to just have therapy privately.  I think I have 6 sessions on the NHS, do I just move to a private therapist now.  

 

I cannot believe how totally anxious I get when there is change in something, it leaves me feeling so awful I cannot find the words to express how awful it makes me feel.  I so hope this improves.  I am not used to such strange, emotional feelings.  I feel very alone at the moment.  

 

This site lets me know I am not totally on my own with these feeling.  Sorry if I make no sense, even as I type this I feel that I am just spilling out a load of rubbish that makes no sense.  I so hope this gets easier.  Its so hard because I am physically doing so well, able to get about on my own and now even able to type on the computer and getting quicker.

 

It's this emotional fluctuations that I find difficult and exhausting.  Phew that's it  for now.  I'll probably read this back and think what an idiot I sound.  Thanks all 

 

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Yoyo, if I were you I would finish the NHS sessions and then see how you feel before going to a private therapist. The time to do that is if you feel you would benefit from more counselling.

 

Recovery is a very slow process and you may not think that you have made any, but you will have, the progress will be so minute that you can't recognise it yourself.

It has been suggested at times on here that you keep a day to day diary then you will be able to see what progress you have made in reality.

 

As for making no sense, you do make sense to us and for you to be able to spill out your concerns on here can only help as it is an outlet.

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Hey I don't like change much either even the smallest and simplest things set me into melt down hate that but cant help it its how I am now..

 

Yes I would finish the NHS sessions (it's so hard to get onto something don't back away) 

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  • 2 weeks later...

Hi Yoyo,

 

Everything you are going through, and everything you are feeling is perfectly normal after SAH. I think what you have to do is to take tiny steps, and not great big ones. From reading your posts it seems to me that you are giving yourself such a hard time, you are focusing on what you can't do instead of what you can do. Try and put your doubts and anxieties about your marriage onto one side for a while and just focus on yourself.

 

Looking in from the outside it seems like you are mourning for who you used to be. It may take quite some time to be that person again, you have mentioned that you are getting better, so there is no reason why you won't keep on improving and maybe one day in the future the old you will again emerge. By comparing the new you to the old you, you are becoming frustrated and depressed, and again, this is perfectly normal after SAH and quite understandable. It was 7 months ago that I had my SAH and I have just received a letter from the Psychologist asking if I have experienced any of the following difficulties:- 

 

. Symptoms of anxiety and/or panic

. Symptoms of depression or low mood

. Feeling unable to be left alone at home due to anxiety

. Feeling unable to venture outside due to emotional factors

. Not doing things because you are frightened that it might happen again 

. Other emotional difficulties

. Being overwhelmed by fatigue and unable to resume a reasonable level of activity

. Difficulties with memory, which might compromise your safety

. Unable to be left alone in the house because of difficulties with memory

. Difficulties in planning and organising things

.Deterioration in reading ability

. Experiencing proems which prevent your return to work

 

All of the above are normal symptoms and most on this site will have experienced some or many of the above. It will help you to post what you are feeling and thinking. You don't have to apologise for being negative, for rambling, for feeling sad. There is nothing to apologise for - it's not your fault - you can't help it and only time and some help will change it. 

 

You are probably taking on too much by worrying about your recovery, your marriage & your future all at once. I would try and break it down to one at a time. Put your fears about your marriage into a box for the time being, your brain is still recovering, it may be to overwhelming to deal with everything at this moment in time. Allow yourself to look after "you" for a while, treat yourself, pamper yourself, and give yourself permission to put "you" first.

Your husband has been looking after you during the most difficult stage, and I am sure that if he can cope with that, he can cope with your recovery and the road that it takes for you to keep improving. As you begin to see the old you returning, you can then start to open up the marriage box and start talking with your husband more and working on your marriage. From my experience, something like this brings you closer together, not further apart.

 

Maybe you could discuss this site with him and he can read other people's experiences, and what you and he will see, is that there are many positive outcomes, there are many that have improved immensely since their SAH which will give you both hope for the future. Then, when you start to see more positive outlooks, you can then focus on what your future may look like. It may be a little different than the future that you once saw for yourself, but it may also be a wonderful future because you survived against the odds.

 

You had a second chance at life, and a second chance at your marriage. It could quite so easily have been written off, but it wasn't. You are here, you are together, and you will keep on improving. You must take that new future with open arms and reach out and enjoy it rather than fear it. It wasn't your time to go, it was your time to embrace your new future.

 

Get as much help as you can from the Doctors, maybe some anti-depressants to help you through for a while. Write on here more, as getting everything off your chest will help very much. When you are ready, you can then start to talk to your husband about ask how he is feeling and what he is going through, and you can then move forward together, but not until you are ready, because it may be too much for you right now to deal with. 

 

Wishing you all the very best with your recovery and your future xx

 

 

 

 

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