Learnt my limitations!

[victoria conway]

It's taken me some 5 years to come to terms with it.  Lord, what a time.  I am not as I was.  I cannot do what I used to do, no matter how I will it.  I have had few doctors who have cared - but one, now retired, younger than me! Who said, Listen, Victoria, you have had a bleeding stroke.

 

I have learnt since to say those words with a certain emphasis (on the "bleeding") you understand. 

 

SAH, or, certainly the version I had, with hydrocephalus and post-operative complications is a form of stroke.  Three times over, my brain got squeezed - by bleeding, by cerebral fluid, by sodium deficiency.  No wonder my right hand side does not work.  

 

What I wonder is that even the people closest to me don't know.  My so called husband, who only ever cares about his own interests - work and sailing.  

 

In his world, I was to snap back to normal.  No SAH - back to his world, sailing, ski-ing, doing what he ever wanted.

 

It does not work that way , does it?  There was this SAH and it has changed my world.  Rendered me incapable on my right hand side, the one  I  used to use.

 

I can no longer do what he wants and maybe I should never have thought I could.  I am in despair.

[jess]

I left my husband because he thought I should be fine just talk to him tell him you can't do it anymore xxx

 

It is hard but you do get there in the end you learn to live with the new you and your husband will too xxx

[Tina]

Hi Victoria,

 

Bless your heart, please dont be in despair. You have come so far and done so well.

 

It took me along time to come to terms with the new me too. It is so very hard when your whole world as you know it, is turned upside down. It's a huge step forward that you now can accept what you cant do and know your limits. Feel very proud of the new you and try to embrace the things you can do.

 

Have you ever considered counselling where you both go and can talk things through. Sometimes family just dont get it. Its not because they dont care, they just dont know how to cope and deal with their own feelings because you did not just 'snap back to normal'. 

 

Things will get better, it just takes time. As Jess has said, tell your husband how you are feeling.

We are always here for you. Take care and let us know how you are doing.

Sending a big cyber hug your way.

 

Take care

Tina xx

 

[Macca]

Hi Victoria,

 

You need to sit that guy of yours down and have a heart to heart with him.  But before you do it, prepare what you want to say well.  Make the things that have the most impact be at the top of your list because first impressions last and stick in the mind the longest. If he stops listening, at least you will have got the most important bits through to him!

 

As for the way you describe yourself, I think you should be more positive.  You sound browbeaten and at your wits end.  You are still you.  Ok, your body may have had a bit of a rumble, but you are still here still fighting and have a second opportunity at life.  And that is the word you should seize upon - 'opportunity.'  Be proud of what and who you are.

 

What you need to get through to your husband is that your capabilities post SAH are different (not worse) to what they were pre SAH.  That is fact.  You cannot change the past but you can change the future and how you both look at it and how you both face it - together.

 

His priority should be you, not his work or his boat!

 

Get involved in his world.  If he goes sailing, go for a ride on his boat with him.  If he goes skiing be at the bottom with a camera.  If he goes to work, ask him what he does, how his day has gone etc, or drive him to work and back again occasionally if it gets you out of the house.

 

Also find some things of your own to do and build your own life and interests so that you are not constantly depending on him.  You can find things to do and people to meet and be friends with.  It's not about being his version of 'normal,' it's about being your new version of 'normal' and you have to make that as good as it can be.  Try and develop a bit of fire in your belly for new interests and passions. Please don't dwell on the past, it's gone.  Don't think what you 'can't do' - think what you 'can do.'

 

It isn't always easy but it is a challenge you can face up to.

 

Life sometimes is what you make it - so make it yours. Stop looking at it as what he wants - what do you want?  What opportunities can come your way?  Look for them and take them up.

 

I hope this doesn't sound too harsh, just go on the attack a little bit and look at things in a more positive way.

 

I have been in your position - in despair - but you must face it and tackle it to overcome it.  I hope this helps.

 

Always here to help if we can.  Have a rant, ask questions, look round this site.

 

Please let us know how you get on.

 

I wish you well,

 

Macca

 

[Daffodil]

Hi victoria

 

i feel for you and I really hope you get a chance to sit down and really talk about what life is like five years on. I am similar to you in timeline and also in level of bleed etc and I know that my hubby will often always look on the bright side so much in terms of what is possible that we both get carried away and then I pay the price head wise.

 

i guess emotionally that's how some people cope, just keep doing what you have always done and everything will be ok but it's time to accept some changes.

 

im just going to quote from the pinned post on the SAH forum: what happens to us 

 

Quote

2. How it affects relationships.

Unfortunately we may find ourselves caught in the trap of needing others to help us and not feeling we have the right to ask. We fear we will be judged stupid or lazy or not doing it right and so on. If we have always looked after and protected others emotionally it will feel very scary to be looked after.

 

If we have never openly and honestly expressed our feelings, this is a tough challenge indeed! Whatever patterns have been operating in our relationships will be highlighted with a vengeance now, resulting in despair and thoughts such as –

 

• Why isn’t he/she there for me now I need them?

• I can’t tell him/her the truth about how I feel, it will do them in.

• I’m on my own with this.

• If I just pretend a bit longer, it will all work out.

 

It is very common for the spouse or close relative to also go through the stages described above – but that doesn’t help you! Unless you can find a way to talk about it, and get support (both of you) from someone other than each other.

 

At this time it isn’t possible for two grieving people to be there emotionally all of the time for the other. Your partner/spouse/relative/friend will begin to feel overburdened and resentful, because they too are coming to terms with this unexpected and shocking change in you and in their lives.

 

They had an expectation, as did you that you would be growing old together in a particular way and all that has been shattered. They will be afraid too. It is absolutely vital that you find a way to talk about it. Open and honest communication is the only thing that will work.

 

Even in relationships where honesty, openness and acceptance of feelings have been a foundation, there will be rocky times. All change brings up our fear – when we don’t know what is happening to us or what might happen next – it can feel like an earthquake has occurred.

As Macca says. Talking is the way out of this. Lean in to each other . X

[Winb143]

Hi Victoria,

 

I am no longer the woman I once was, instead of arguing back I cry lol.  but I find it easier to be happy than waste my life worrying as I find being happy is less stressful than  wanting to growl at them like this  Grrrrr !! lol xx

 

I sing when I feel down and music cheers me up, poor family as I'm tone deaf.

 

We understand what you are going through.  Stress is bad for us so we need happiness around us  xx

 

I cannot walk very far and hubby is a moaner when he has to take wheelchair out lol

 

But getting better but have off days like we all do so listen to Win. Ready?  

Only talk to people who do not moan or tell you sad things. Keep thinking happy thoughts morning and evening and when family get to you have a sleep xx

 

Good luck and I hope all goes well

 

Win xxxxxxxxxx

Plus hubby has a boat also !!  How am I supposed to be wheeled over the wooden gang plank wobble wobble  ha!

 

 

[Chelle C]

Hi Victoria, Welcome to BTG,

I`m so sorry you are feeling such despair, what I`m about to say I have not said to anyone apart from my doctor.

 

When I had my SAH in June 2014 my partner was fantastic, he really did take good care of me, always reassuring me that everything would be fine, no matter deficit I was left with we would get through it together,

When I left hospital I had left sided weakness, couldn't walk unaided, had a lot of head, back and leg pain, the hospital gave me pain meds to take when I was discharged home.

 

I`d been home about 4 weeks when out of the blue he told me he didn't want me taking anymore pain meds, I told him I had to take them because I was still having a lot of pain, he then told me if I didn't stop taking them he wouldn't love me anymore, as you can imagine this totally shocked and horrified me that he could say such a thing.

 

The following morning he took all of my pain meds back to the pharmacy, telling them I no longer needed them, I wasn't strong enough to fight back, what I did do was go to see my doctor, when I got there I totally broke down and just poured everything out, she was great.

 

She actually phoned my partner and explained to him that I needed pain relief and she was prescribing me some more, he was not to stop me taking them and if he did then there would be consequences for him, I was dreading going back home but when I got there he was fine, I don't think he expected me to tell her what he had done.

 

Jumping forwards 10 months into my recovery, I had managed to get onto arm crutches and get on my feet, while I was waiting for some physiotherapy he said he wanted me to stop using crutches, I told him no way was I doing that because I would just fall over, when the physiotherapist came I told her in front of him what he wanted me to do, she told him no way was I to go without them, not until I was confident that I wouldn't fall.

 

When I had my 6 month follow up with hospital, he nearly fell off the chair when the Professor said I should start to see some improvements over the following 2 years, he said " how long " years, I thought she would have been back to normal by now, that's when he was told I would probably never be the same as I was before SAH. I was so glad that he was told that because it made him realise there would be a new normal for me, well both of us actually.

 

I hope when people are reading this they don't think I am horrible for telling this storey, I actually typed it 3 times and deleted it because I was worried what people would think, we have been together for 18 years and I love him dearly he has been my rock through all of this. He now understands more about what I can do and what I can't, I do stand up to him more now that I have the strength to do it.

 

I know this has been a very long post, I`m sorry, but please Victoria try and talk to him, talk to your doctor and maybe they might be able to explain more to him about what your limitations are now. You will become more accepting of who you are now, like Macca said you cant change what has happened in the past, you can however be in charge of what happens in the future, start loving the new person you have become, that's what I have done and I actually quite like the new me.

 

This is a fantastic place to come to when things are tough, it`s also the best place I know to make new friends, with lots of advice and so much help and support, it`s perfect.

 

We are here for you, I`m sending you a big hug as I think you need one,

Good Luck

Love

Michelle xx

[Sharlua]

Michelle thank you for sharing your story and hope it will be help to Victoria, my family and partner too were great at the beginning, very supportive and understanding but the levels of this lessened quickly.

 

I can relate in some ways to your experience Victoria, life goes on as normal for them, I guess your husband has always been a workaholic and passionate about sailing.

 

This certainly happened in my family once they thought I was safe i.e. home and managing to get up!, they just got on with things they had always done, I sometimes felt very alone coping with the emotional after affects from my SAH,  it is very difficult to express sometimes what we need from our families.  

 

As suggested by previous excellent posts communication is the way forward, exploring how to make the relationship work particularly dealing with the impact from SAH.

 

It is also good to seek external support, I did and it helped immensely to understand my feelings, anger (falsely apportioning blame for my SAH on demands from mothers Alzheimer's and stressful job), emotions and to have some strategies to support my own wellbeing.  People react very differently after crisis, often as result of upbringing, past events or need to be in control, all of these things will affect both you and your husband.

 

It is good to have an outside person who is not emotionally involved to give a more balanced perspective it certainly helped me.  This forum can also be a very useful supportive group who can share experience, friendship and a sense of humour to help you on making a good but different life. I wish you well and look forward to hearing from you.

 

Regards

Sharon x

[Winb143]

Hi again Victoria,

 

I have laughed with all on here and been a pain in the butt typing on others posts, singing a song you name it I have done it on here.

 

They BTG/ Family stuck by me and gradually found I needed to sing and laugh to get through it,  and as Michelle has just put about her Partner, how they want us to be better sooner than our brain is ready to let us get back to some normality !!  (I was never normal) !! 

 

Serious though, do what suits you in your own time and you will get there.

God Bless you and keep moving forward and sing  xx

 

Win xxxx

 

[victoria conway]

Sorry it's taken me a while to reply to all your kind posts!  Alas, I had an episode of the tummy bug that's going round locally and that just floored me for a while.  Also, I have been kept busy doing things for the church - since I retired, at long last, from running my charity at the end of last September, I have started a lay ministry course and am also the treasurer for our little church now.  My brain still operates, intellectually!  

 

But I do need help with physical tasks now.  For instance, this evening, I have managed to get a cassoulet (French bean stew) in the oven but the clearing away of vegetable bits and the washing up is beyond me at the minute.

 

Hence my sitting here typing this (badly - the right hand is not behaving and I keep missing out the n's!)  So, H will be faced with the clearing up when he comes back soon from his French class.  I know this must be a downer for him but it's just the way things are.  

 

But a big thank you to all of you for your responses and best wishes.  I haven't been here for a while but it does so help to know that I am not the only one who feels as I do.  And I have tried to talk to him and explain (shoot - the l's are disappearing now!) but all I get is - well, they told me you'd be back to normal in 6 months.  

 

I've tried pointing him in the direction of Headway and they sent him leaflets, which he has neatly filed.  I have tried writing to him to explain the way I am - again, they just get filed, with dates on, for some reason.  I've tried counselling but he just does not engage with it.  I am currently thinking about going to see the counsellor on my own to ask her advice.  It is like I am living with someone with his head planted firmly in the sand.

 

The trouble for me is that it is making me feel so guilty.  That's a propensity I have, in any case.  I think I have, after some difficulty, accepted my life now and, so long as I can plan things so that I know what I'm doing or where I'm going.

 

 Can have plenty of periods of rest and avoid using the stairs except to come down in the morning and go to bed at night, I'm OK.  But I do need to have those plans and I think that one of the effects of this whole SAH thing has been to rob me of spontaneity.  

 

One of my chief loves was cooking - and I mean good cooking.  So, if I can bore you with an example from a couple of Christmasses ago, I had planned the food for the day when all of his family were to visit.  Planned it down to what came out of the fridge when and what was done when, to give me time and space to get it all done .

 

I showed him the plan and said to him the night before - look, I've planned it all, please do not do anything until I ask you.  Descend the stairs the next morning and he's got all sorts out of the fridge festooned all over the kitchen.  The effect of this is to put me into panic mode - and then I've had it.  

 

Breathing goes to pot, blood pressure yo-yos - you know the scenario. So, it became a big thing - that he had to put things back in the fridge and adhere to my plan, and I felt resentful that he simply had not listened to me in the first place.  Not ideal for the occasion.

 

I like the idea of a doctor explaining things to him - but what hope, when you're rationed to a 10 minute slot, these days?  My kind, listening doctor retired shortly before I did and I'm exploring the rest of them, so far without much success, but, on the advice of my hydrotherapist, I have booked an appointment with one who may prove helpful - but not until 31 January!

 

Hey ho, I'll keep on trying!

[victoria conway]

Somehow, I managed to bring this here!  The words are in old French but the music, by Faure, should be an acute over the last e - just wonderful.  Crumbs, I only brought the first one!  Now suddenly there are all theses others! Enjoy the peace of our Lord! love Victoria