Bill B

On 01/08/2012 at 15:47, Karen said:

TALK GIVEN BY MARIE ALLEN - PSYCHOTHERAPIST TO THE CEREBRAL ANEURYSM SUPPORT GROUP NOTTINGHAM - May 1st 2008

 

1. What happens to us emotionally when we are traumatized by loss of any kind. The stages of grief are:

• Shock – This is a natural initial response; we feel disconnected and may even be quite calm, as if watching what is happening from a distance. Unconsciously we are evaluating what has happened - Action; calmness, blank, as if in a trance, dreamy (often assisted by drugs)

• Denial – “It can’t be happening”- Action; trying to ‘get back to normal’, avoiding facing reality.

• Anger – “It’s not fair, no-one understands what its like, why me God?” – Action; lashing out at those closest, dumping anger on others.

• Bargaining – “Ok God just let me do this…. If I am good/do it right, then I’ll get better? – Action; trying to control everything, looking for a way out.

• Depression – “Why bother, I’m doomed, this is forever” – Action; throwing in the towel; eating food, alcohol etc., that you know cannot be good for you, retreating from the world and other people, feeling hopeless.

• Acceptance – “It’s ok. I’m Ok. I don’t like it but I’m alive” – Action; re-engaging in life, appreciating small things, finding reasons to be grateful, allowing sorrow, finding a way forward.

 

These stages are ‘coping mechanisms’, allowing us to take time to process what has happened. The stages are not necessarily sequential – most of us move in a cycle from one to the other in any order and we may spend longer in a stage than any other, depending on our character traits. So one moment you may be depressed, then bargaining, then angry, then denying again. We may have long periods of acceptance, only for fear to arise again and trap us in anger at our sense of being an unwilling victim. You may notice that you are more reactive than normal – small things upset you out of proportion, you feel panicky and anxious most of the time, needy around people.

However, it is not a good sign when we are stuck in this cycle, it is evidence that we are not processing what has happened and a sign that we are still avoiding reality.

 

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.

 

3. The spiritual aspect of this illness – why me? Finding a refuge in what has meaning for us, a way to carry on living rather than focusing on fear.

In truth an earthquake has occurred and you will never be the same again. You may recover physically to some degree, but emotionally the rug has been pulled from under you. All your certainties have gone. You thought you knew your body; you thought it was strong, that this kind of thing only happened to other people. This is why your confidence is in shreds. One minute you are going on with your normal life the next minute – wham! Where do we turn and to what do we turn when things like this happen?

 

It feels we have to trust hospitals and doctors to save us and make us better – and they do their best with what they’ve got – but that is limited to the physical, mostly. They cannot mend our confidence; they cannot give us a way of finding meaning in what has happened, only physical explanations. Traditional sources of comfort have all but disappeared. Nowadays few people have faith in the Christian Church (and if they do and can find solace there, that is good) Most of us are lost in a culture that does not value the spiritual (by that I mean belief in a higher power).

 

It’s a tough call to begin to explore what has meaning for you when you are struggling with an illness and trying to cope with disability, relationship difficulty and depression. But find refuge we must if we are to turn this around and find a reason to continue with our life and live it as fully as possible.

 

Most of you will have experienced much relief and solace from simply being able to share with others what you are experiencing. That is a beginning. When we can feel safe and accepted with kindred spirits, that is where we can take refuge, lick our wounds and begin to rebuild our lives.

 

It only when we reach the final stage of the grief process that we can move forward – and there will come a time when you are mostly there – because it’s only through acceptance that you can move forward. I’m not saying it’s easy, but it is liberating to let go of wanting something that is not coming back. Hoping and wishing and regretting only causes emotional pain, focusing on ‘should-have-dones’ is pointless.

 

Suggested reading:

Why Me? Why This? Why Now? - Robin Norwood

Who Dies? - Stephen Levine

Conversations with God - Neale Donald Walsch

Close to the Bone: Life Threatening illness

And the Search for Meaning - Jean Shinoda Bolen

 

Suggested (safe) practices for managing feelings:

Counselling – try and choose a Practitioner who can deal with feelings – not all of them can!

Relate is an organisation available for couples to work through problems.

Meditation – excellent technique for calming the mind and lowering blood pressure.

Guided meditations or visualizations – can be as effective as meditation.

(There are many types of meditation, try them out to see which works for you)

All of the above. A long way to see all of this. I could have used this along time

ago.

By the way,…..very incisive Lin!

I am 10 years recovered. Many highs , and recently, many lows. Anxiety is a huge part of my life.  Anger, fear, 

…..the need to hide away. The difference between my former life,….pre- SAH,…….and now , is immense. All I can say is,….just keep trying,….the alternative is nothingness. 

Hi Daffodill. This is my first post ,in nearly two years. I was diagnosed with ptsd,.prescibed beta-blockers and re uptake inhibitors. They do work,......but have alarming side effects.  Things are much more stable now. I am venturing out of the house, though the fear is still monstrous. I was in a terrible place last year. Aggression, short temper, lack of modesty filters,..........all of which led me to withdraw from normal life.

I had 18 months of counseling, and a complete drug regime, all of which, has let me venture out ,safe in the knowledge, that I will not be a harm to myself, or others. Ptsd is an horrendous condition. Vertigo, loss of balance, adrenaline rush, hallucination, and withdrawal from normality. Controlling the symptoms is a real struggle,.........but the meds help! I hope it all improves for you. Love,Bill.

Hi Debz. I am no expert, but have been through the full range of relationship experience, in the eight years of post SAH recovery. First of all, I would tell you that everything is great now. It has not always been so. Like you , I have had accusations of lazyness, selfishness, matyrdom, pity-milking behaviour and "for God's sake pull yourself together" , and get over it! The lack of a scar is a handicap. No-one would abuse a wheelchair- user or white stick carrier etc, etc. But we are different,......no visible sign. This is the problem for some partners. We, know that the exploded head is just the same as heart attack or trauma injury but others don't see it like that. One day ,you were fine, then you were in hospital, then you come out, ......you look just the same,.but you are not the same. I don't know if you can have this conversation with your boyfriend, but you need too. It has taken me years to ,finally, explain all the long term residue of my event. Now we are at peace with it all. I hope you can resolve your situation. Talking it through is the only way. He may just need more information, something that is ,sadly, lacking from the follow-up care. One more thought,.....this didn't just happen to you,....it hapened to your family and friends as well. The response of loved ones take many forms. Some will push you, some will tread on eggshells, some will ignore it all, and some are not really your friends at all. All of them have their own way of dealing with your trauma. Be patient with them, it's all new to them as well. Good luck. Bill.x.

It has been a few months now, since I last stuck my head above the ramparts.Depression and anxiety have laid me low. So what? I hear. We all feel low! But here is a dark truth. Having feelings , of any kind , is great. Real depression is being without any feelings at all. Having to think of body language /facial responses in social situations. The selfish thoughts of not wanting to exist anymore , and the damage that is caused to my family, because they know this is how I feel, is like an ever growing crescendo of noise. I don't have any answers , no sweet reveal, no happy ending, just one stitch in time. Once you make the decision, to stay alive, the endless ,empty void , that is depression,is just another ,transient state. All of us on this site, who struggle with these feelings (or lack of feelings) must understand, that the tunnel has an end. We must believe, that there is light and good , in all our futures! That's all

I have to say.

Hi Fern. I had a second coiling performed six years after my SAH. I, too, was terrified but , like you, the thought of leaving the anni untreated was just not an option that I could live with. The op was successful but left me with double vision and balance problems (third nerve palsy). I see this as small price to pay, for peace of mind ,that I will not explode again. Good luck Fern. Bill.x

Hi David. I, like you , have recently hit the buffers. After years of improvement, suddenly, everything unraveled.

I now try to imagine my life trough positive thoughts. Cognative therapy is helping, but the black dog is still sitting on my shoulder. We are all in this mess together, and no-one is immune from the negative feelings. Thank Karen for giving us this outlet for our misery. I hate being negative...but, sometimes, it helps to spew out your angst. Cheers, Bill.

Hi Linda, After eight years, I just don't seem to notice the constant "after- ring" in my left ear. My hearring is now mono and it can be quite disturbing, when my eyes tell me something is on the left, while my ears tell me it's on the right! I was diagnosed with"Third nerve palsy" a few years ago. This is a condition that a few of us on this site have. The Ani is coiled , then settles against the Third neve, causing double vision and tinnitus. Also, the whooshing sounds, that feel like an internal toilet being flushed! Weakness down my left side........etc, etc....but what I wanted to say you ,is, all these alterations in your being, become normal, and manageable, over time. From the outside, you don't look any different to anyone. With some adjustments, life is still good, and anything is possible. Cheers, Bill.

Hi Jigsaw, I have not been on BTG for a while! A few problems have restricted me. welcome , though, to you, and I hope you gain as much strength, as I have, from all the loveley people on this site! You are in the right place ! The full road to recovery is convoluted, and strung with setbacks, but , the understanding of fellow survivours is essential. There is so much love here,......it keeps you alive. Welcome girl! BILL

X.

Hi Vanessa, I am very interested in any Nottingham support.I need all the help I can get! Oct. 4th .....Ill see you there! Do I contact the SAH nurse for details? Iv'e got a phone number somewhere. PS, I neXXver said hello....so, ...hello! Love BILL. XX

Hi all, it seems like lots of us have this problem, and it is a problem, because of the debilitating consequences of brutal honesty. I think it is worse for me because I used to perform comedy , in pubs, and much of the improvised act was based on the hipocracy and dishonesty of the audience. When you are in the accepted role of performance, you can get away with outrageous statements, because the rest of the audience suppresses the anger of the target. Not so, in real life, the response to my berating a litter -dropper, is one of hostility, and horror from the public. This causes me to turn on the public, for their inaction, and acceptance of anti social behaviour. So, you see why I don't go out any more! Mary, yes I am having therapy, and slowly, things are calming down. The plus side is the new level of honesty that my wife and I now have. I never hide any feelings from her, and , although this can be painful sometimes, there is a whole new level of trust. Amexdm , thanks for your words, I was a lot stronger back then. Daffodill, I love the idea of an honesty booth, I have a Punch and Judy routine, complete with mini cans of "Stella" all about wife beating and society and the courts, ignoring the massive problem of hidden violence . The sad thing is, people think it's very funny. So I berate the audience with the drunken Punch character. I need help, don't I? Oh yes, I'm getting help...... I forgot. Lisac, you've started something here.....good for you! I'm off to take my tablets. Speak soon! Bill.xx

Hi Lisac, this subject is very relevant to my present situation. First of all, following my SAH, I spent years suppressing my feelings of superiority. I know it sounds arrogant, but people irritated me , with their whining, petty, insignificant problems. Secondly, nearly eight years on, things have become so intense, that I can not leave the house, for fear of upsetting someone. I have become brutal in my commentary of other peoples behaviour. I am undergoing therapy for this, and am being instructed in the use of "modesty filters" to curtail my venom. So, to come to your point. You are not alone , in your feeling of genuineness, and, yes, I think a near death experience is what triggers it. I hope you don't fall as far as I have.On the few occasions that I do go out , with friends, they think it is hilarious, but I do not. I can't tell them, that I think they are all insects, with no vision of reality. The social norms and normal subterfuge of polite conversation , the hidden subtext, the subtle flirting, all irritates me. So I stop in! You are not alone with your honesty! This is my first post for months, I've not been well! Good to be back! Bill x

I love this thread!!! I was a goal keeper for 30 years, playing, in goal, the day before my SAH, at the age of 49. It is, in your genes, my son is a goalkeeper, and is just as mad as I was. I have so many scars and injuries from playing, collected over the years, and I too regard them as badges of honour. As for playing again......I tried,.....but could not see properly or judge the speed of the ball......so I stopped . My Dr had told me that there was no risk involved , in playing again. It was just unfortunate that I could not see. Don't be afraid, if you can do it.....do it. All goalkeepers are mad, And I, for one, am glad, I

'm mad! All the best. Bill B. xx

Hi all, I was driving and ran head first into an articticulated lorry. Had the same "ball of light" as some of you guys. Not as bad as being in the fast lane of the motorway though! Bill.x

You're absolutely right about professionals opinions. Nothing is official until pronounced by one or more Dr or therapist. I got my official diagnosis today. Nearly eight years post SAH. Post traumatic stress disorder! Finally! A reason for my depression. I have been saying this for years. It took a complete breakdown to get diagnosed. I suppose I wasn't sick enough before. Now I have to wait for a counselling package to be arranged. I hope this is the start of my real recovery. Ever since the SAH I have tried, ignoring the symptoms, getting busy with a new profession and opening up on BTG , all this led to the point I find myself at right now. All the time I was masking the real problem and giving up drinking has removed my anaesthetic/prop and revealed the oblivion that I walked away from. Now , every night, I think of the moment before the operation, when the surgeon said "you probably won't survive this, but we'll do our best". I didn't care whether I survived or not, as long as the pain could be stopped. That is the source of my depression, because the feeling is the same now. I don't care if I wake up or not. So there it is, it took a long time to realise what was behind all of this. I hope the therapy works, and hope this really is the beginning of healing. I feel better already, just writing this . Thanks BTG ,.....for being there. Bill B.x

Bath and then sleep, it's good to be back!! Seriously, It's been hard to post agin....I'm glad I have. Bill b.xx

Damn Citalopram and propranol, turns you into an emotional wreck!

I love my Ex, never stopped loving her, didn't want too give the impression that she was a burden. BB.xx

Hi. Not been posting for a while. Have had a bit of a breakdown. In short, got accused of something terrible, at work, this triggered post traumatic stress syndrome. I am currently on 4 types of meds and undergoing psychotherapy, due to scoreing 17 out of 20 on the GAD SCALE. Apperently 15 out of 20 is considered "suicide risk". I am not suicidal, but do not want to wake up anymore. What's the difference? So forgive me for my absence, I have been looking in to BTG and keep threatening to post. As regards this thread, I too, have been on that beach (Lliggwy, in Anglesey) with the water consuming me. I was saved by friends who worked it all out. What kind of therapy? All kinds, medical and emotional, and the kind you get on here! Sorry to be such a downer , but life is pretty bleak at the moment. I have developed an unhelpful relationship with my EX. All this was triggered by the accusations. I had no idea that I was so vulnerable. My sympathy goes to you Mikey, I know how you feel! Keep talking mate, as I will try to keep talking.Bill.B.xx

Hi Debbie.

The information you were supplied with, upon discharge, is statistically correct.

It is very unlikely that you have another bleed.

This information will not make those feelings of dread, concerning a re- bleed, go away.

We all, on this site, feel that the pain will come again, and no amount of medical reassurance can make that feeling go away.

All our side effects subside in different ways. The sea-sickness has never left me, even seven years on from my SAH, it still invades my life every day.

The other side effects, like depression, headaches,fatigue, over sensitive emotions and lack of confidence have all gradually improved.

The reason you received no pastoral or emotional advice from your medical team is, that they have no idea of the long term legacy that follows the trauma of a brain bleed.

The neuro- teams at all our wonderful hospitals in the UK are expert in fixing the physical body, but clueless, when it comes to rehabilitation.

There has been a study conducted, and responded to, by survivors on this site that may improve the understanding of the medical profession,

if they take on board all the responses.

It is a good thing to keep in touch with your fellow ward -mates, just as it is a good thing to correspond with all your virtual ward-mates upon this site.

Our experiences are vastly different but, at the same, very similar.

If you have managed to emerge from your event without too much physical damage, you are very lucky.

Some of us cannot see properly, some cannot walk some are so tired that normal life is very difficult.

Welcome to the site Debbie, I hope you continue to gain strength in your recovery.

You have found the right place for advice and support.

All the best,

Bill B.

Hi Nic.

Interesting idea, but I don't think there is such a thing as an aneurysm season, mine was January, my sister's was July.

I think it's all chance.

Bill B.

Hi JellyB.

Returning to work is a massive endevour.

Lynne is right , when she says some employers are committed to equal opportunities and some aren't.

They all say they are, but experience tell us that some just pay lip- service.

Following my event, I re- trained as a teacher.

I was lucky enough to be supported though my training and initial appointment , by a group of people who were damaged in other ways.

I realize that this is just the luck of draw.

Being able to dictate your own hours and set the the perimeters of your working conditions is vital, to the success of your return.

I have played the disability card many times in my present job, not in a negative way, but in a way that highlights the company's positive support of

recoverers of a range of conditions.

Being the resident "Brain injury" man works to my advantage now, and I revel in the role.

Small companies are unlikely to employ you if disclose your history. They cannot afford the risk.

Large corporations, councils and the education system, on the other hand, will accommodate you, in all your damaged glory.

You are not obliged to disclose any of your previous medical history, but it may come to haunt you, when you request special treatment,

related to your condition.

Personally , I would disclose the SAH and trust the HR dept to do the right thing.

There are no comebacks when you have been honest.

I have been amazed how sympathetic everyone has been. I feel the need to soldier- on through illness, because of the fair treatment I have received.

Make no mistake, rebuilding your life is difficult, but the insight gained from your event can lead to great things.

I say all of this in great humility. I know I have been incredibly lucky with all the circumstances of my own recovery and not everyone has had the same

luck.

So, is SAH a negative on the job front?

Yes..... and no...... it all depends on you.

All the best.

Bill B.

i

Hi Nic.

I too, have eye problems. Every time I go to my optician for a check-up , he recoils in horror at what he can see.

I tell him to relax, and just do your best to fill my prescription. He always wants to propel me back into the ophthalmic system, but I explain, that I have

been along that particular conveyor-belt, and fallen off the other side.

I have recently been discharged from the ophthalmic department at the Queen's Medical Centre, Nottingham, as I have refused to have the proposed

operation, that would reduce the function of my "good" eye, to match the function of my" bad" eye. It seemed an idiotic solution to me,

risking a worsening of my condition, on the off-chance that things may improve. Stick or bust! I think I will stick with what I have.

I have developed coping strategies to reduce the impact of double vision, and spend my time looking like some, demented pirate or

mad scientist, with one eye open, staring, like a dog , that has just been shown a clever card trick!

The body language is often misread, but I have come to ignore all the negative reactions to my demeanor.

This is my mantra.

I am blind , but not blind enough for a stick.

I am disabled, but not disabled enough for a badge.

I am crippled, but not in any way that anyone can see.

I am disadvantaged, but not in any official category, or any definition accepted by the state.

I am like everyone else on this site, left to recover, without anything, but fellow sufferers support.

You have only just begun your journey of recovery.

I am seven years down the line.

It all becomes easier over the years, with wit, acceptance, humour, and all the support from these wonderful people on this site.

Things will level out and settle down.

You only need one good eye.

Ask a blind man!

All the best.

Bill B. ( Now,fully adjusted to the new reality, that is my life post SAH)

Hi Alison.

This site is full of people who have had every vascular event imaginable, so there will be loads of support and advice available over the coming months.

Partners of sufferers have, sometimes, to carry the burden of the aftermath and can be sidelined in the recovery process.

It was many years before I realized the full extent of my wife's sacrifice in my recovery process.

This site has been the bedrock of my real recovery. Unconditional support and advice , not available from the medical services,

and just good old fashioned encouragement, born in experience.

I am sorry you had to look for us in the first place, but now you are here,

welcome.

I hope things go well for Chris.

We all know the fears you are currently feeling, some of us personally, and some of us having worked through them with our partners.

I wish you strength and good fortune.

All the best,

Bill B.