Friends

[ninja]

Hi All

I'm back to an old subject of mine regarding "friends". I am now 5 years post coiling and am awaiting another scan next month and may need more coiling. Throughout this period I have been amazed as to the attitude of some people including so called good friends.

During the period just after coiling I was deserted by many because I did not want to go out or when out I wanted to go home as I was exhausted. Many people became bored with this and basically lost patience with me, however I still had good friends who supported me. My problem is now that I am 5 years on even these "friends" are becoming distant. About 2 months ago I caught a virus as did my wife and at the time we were due to go to a 60th birthday party, we felt too ill to go and told the friend that we were sorry, handed over a £23 bottle of whisky and left. Since then they have become distant, have not been in contact with us nor really thanked us for the gift. At the time my GP had told me that due to me having an aneurysm many ailments I would get would be worse due to this I believe they probably heard we were shopping in town and therefore could have gone to the party both I and my GP knew this was impossible. A second instance arose when I saw a good friend in town when I was using a walking stick due to arthritis and my balance being affected again due to my aneurysm, He said "Come on John throw away that ****** stick you don't need it you look fine", probably said as a joke but nevertheless it hurts.

I believe that the public in general should be made more aware of the effects of a SAH on a person as they are regarding strokes which at the moment are subject to an advertising campaign on TV. I do carry a card with me to explain to people the possible side effects I am experiencing but is impractical to show it to all those who do not understand.

Sorry for this rant but its a subject I feel very strongly about and I really feel there should be more publicity widely available as I feel I am slowly becoming an outcast through no fault of my own. I do accept I am a miserable, depressing and sometimes an aggressive old *** but it really is not of my choosing.

Cheers All

John :frown:

[kelvz48]

john, I know wxactly what you are saying I am approaching the 1 year mark after my SAH and have recently returned to my stressful job full time following a phased return. At first everyone was very understanding but that soon ended and now when I tell my colleagues that I refuse to put myself in any over stressful situations I get the impression they think I am pulling a fast one which makes me feel that I am letting them down. They cannot begin to understand just how exhausted and mentally fatigued I sometimes get.

My family who on the whole have been fantastic sometimes forget that it was only last August that we went through an absolute nightmare because of my SAH and often I feel that I am being patronised when I complain of tiredness or pains in my head which is often replied with "we all get tired", which then frustrates me and makes me angry. Very often I have to make an extra effort just to go for a meal because I never really feel up to going and always return home early in the evening. In general, social events are a no go and when invites are politely declined I often get questioned on why (sometimes even by my wife).

I strongly agree with you that there should be more awareness on the effects of SAH.

Best Regards, Kelvin.

[Gill C]

Kelvz I am with you & won't put myself under any undue stress not for anything or anyone. I did have some problems a while back & put my foot down saying I wouldn't be involved with something I wasn't comfortable with & was then made to feel guilty for 'not doing the right thing!' I have stuck to my guns & if I'm tired I leave early & that is that. I have learnt the hard way overdoing it as a negative effect of me for the next few days so it isn't worth the risk. *** those who sthave left because they can't adapt to the new you, concentrate on the fab friends who have stuck around & are here for the duration I say

[tracy]

John

Definately there needs to be more awareness of SAH. There is so much advertised about strokes, but when i tell people that my bleed is effectively a stroke, they say but your face didnt drop down. People i speak to dont have a clue what a SAH is, so i just say i had a brain haemorrhage. It really bugs me that people see me well on the outside so think thats it im healed.

Take care

Traci S xxx

[Riane]

I'm coming up to 6 weeks post-SAH.

My 11 year old called me up today from her dad's house (he and I share custody) and she asked me if I'm better yet.

Ok, she's only 11...I had a talk with her and talked to her about when she broke her arm and how long it took to heal and it was in a cast. While our brains do so many things even when we don't seem to be using them...I hope she got it a little more. I'm sure we're going to have to talk about it again.

And again.

And again.

Yesterday I had a nice phone conversation with Sandi K. During our talk I spoke of my outrage that I was sent home from the hospital with so very little information about what to watch for in my healing journey, or where to find more information.

I told her that when she and I are feeling better we should make a pamphlet to hand out to SAH and PM-SAH survivors when they are discharged from the hospital. It could talk about each person's recovery being different, while naming some things that can be very common. And, it could include website addresses for places like BTG (assuming there are any other places like BTG).

Of course, being so close to the event, it's the early stages that are forefront for me.

Perhaps there could be a series of pamphlets made up.

One for Aneurysmal-SAH, the first stages of recovery. One for PM-SAH, the first stages of recovery. One for SAH, the long-term effects. One for people who love/care about survivors of SAH.

Oh, I'm already exhausted contemplating the work involved.

But seriously, I do graphic design. Layout of pamphlets is still a fairly easy thing for me. All I need is the information to include on the pamphlets....well, that and the energy to see it through.

...and the money to print...

...and the money to distribute.

Frankly, despite the obstacles I do believe it can be done.

And I believe that who better to get the information together than the people who are living it.

Isn't that how the Stroke Foundation (may have a different name in the UK) was started was by the stroke survivors and their loved ones.

Seems to me it is time to begin the early stages of getting the word out about SAH.

Perhaps it takes 5 or more years. It's a damn good thing for me that Karen started this place 6 years ago. What's 5 years when you move at the pace of a SAH survivor?

Just think about it...

I won't be in any position to seriously consider putting together a pamphlet for an undetermined time. I'm asking people just to consider it. Perhaps there are enough of us with the combined skills/resources to one day see this to fruition.

Ok, I'm stepping down off my righteous soapbox now.

Please accept my appologies if I've hijacked the thread, or if this is discussed elsewhere. Just chalk it up to newbie zeal.

Now, back to the regularly scheduled program on the understandable frustrations felt in the face of former friends who just don't frikkin get it.

Riane

[ninja]

Hi Riane

I agree totally with you. I expressed my feelings hoping that perhaps someone of medical experience "may" read our entries and may possibly stir up some action.

There is an advert on our TV in UK that publicises the effects of a stroke and it tells people what to do at the time but there is very little ever shown regarding SAH's. I am fully prepared to discuss with whoever takes an interest. As I am now 5 years post SAH I get the distinct feeling that people think I am back to 100% fitness, if only that were true. I have replied to a couple of surveys on this site from graduates etc.so you never know someone maybe "out there".

Cheers

John

[FionaH]

Most of my friends have been amazing. They have looked after me, looked out for me, took me places, made me laugh and told me I can carry off no hair and a huge scar no problem.

A couple have been equally phenomenal in their self centredness, they have managed to make it all about them. One spent my first get together with friends after I got out of hospital in a different room telling a another friend for 4 hours how stressful she found it all. It was the first time I'd seen her.

Another told my 3 year old that if she didn't stop making so much noise I'd wish I had died to get away from her. She is 3, did I mention that? 3! I wonder if he's figured out why I haven't spoken to him again....

Still I have found that in the grand scheme of things that the relationships that really matter to me are much stronger now and as for the rest, stuff 'em. Life is really too short!

I love the idea of leaflets, any written information to take home from hospital would be fabulous. It is really hard to explain what we have gone through to others as it is, even harder when we leave hospital not fully understanding it ourselves!

[Louise]

Been there know that all too well.....

lost friends - but those kind I or anyone dont need, mostly it was just Ronnie & I and of course my Dad in the first 2years.

But I SO agree there should be leaflets not in the techinal jargon but just like we tell it on here I think that would give people in hospital hope that there is life after a SAH & well as stroke.....

[Winb143]

I agree Louise.......need the books for my hubby when he says I am not trying hard enough.....but I got my own back !!!

He caught up on the gardening and now has backache..I said "hows ya back Al"..he said "it hurts"....I just said "mines been like

that since September"......1 to Win 0 to Al...aren't I horrid....yes you are !!!!!!...oops still talking to myself

Have a goood weekend all

Love

WinB143 xxxx

[goldfish.girl]

Hi John - I have found the same. I am 3 years on and long term friends don't understand why I recently admitted to myself that bits of my brain (and physical issues) have made me leave my job - their response 'are you going to look for something else'? If I felt I could carry on (after giving it my best shot for 2 years, I wouldn't have left! Part of the reason I left was a lack of management understanding that I may look normal so why can't I do what I did before.....

Rhian - my son is now 10, he was 7 and on his own with me when I had the SAH (not sure if your child was present when it happened?) so he understands just how serious it was. I was also given leaflets designed to explain the long term effects of a brain injury to a child from a social worker & a brain injury support worker - is that avenue available to you for your child? If not PM me & I could send the booklet to you if you think that would help.

I think that as you become stronger after the initial event, regain some of your outward composure (physically & mentally) that people think you are now ok. It is very frustrating. Personally, I don't want enternal sympathy, just for people to understand how life is now and adjust to it as I have had to do myself, I'm still me just not as able to do the pace I did before.....The two closest friends I have now are friends I have made since I became how I am now. Try not to let it get you down John, you cannot make people who chose not to see, see

Michelle x

[anderss77]

I'm coming up to 6 weeks post-SAH.

Yesterday I had a nice phone conversation with Sandi K. During our talk I spoke of my outrage that I was sent home from the hospital with so very little information about what to watch for in my healing journey, or where to find more information.

I told her that when she and I are feeling better we should make a pamphlet to hand out to SAH and PM-SAH survivors when they are discharged from the hospital. It could talk about each person's recovery being different, while naming some things that can be very common.

Riane

I received such a pamphlet when I was sent from the hospital were I was coiled and to my local hospital. For 3 months until I went back for a followup, that pamphlet was like a lifeline for me.

It's just a piece of paper with some basic info about SAH, but it answerd a lot of my questions in that early phase.

[FionaH]

Headway sent me a booklet called 'My Mum Bakes The Best Cakes'. There is a 'My Dad...' one too but I can't remember what it's called. Anyway they seem very helpful for explaining the longer term effects of a brain injury to younger children. They might be worth a look?

x

[Liz D]

http://www.brainandspine.org.uk/information/neurological_conditions/subarachnoid_haemorrhage/index.html

This link will take you the Brain & Spine Foundation booklet on SAH. Might be worth a look for ideas Riane. I was sent a letter from the Neuro Specialist Nurse after I returned home, which explained a bit of what to expect but really only covered the first 12 weeks. It also gave a list of support groups which she suggested would help me further. Only problem was, they were all in Edinburgh, an hour + drive away on a very winding A road! No way was I capable of doing that for a good many months after my SAH. I wish she had given me a note of this site, I did tell her all this last year, no idea if she now gives the address out.

As for friends, I've lost a few. One 'friend' actually dives into a shop when she sees me coming! Needles to say we haven't spoken since I had my SAH in Feb '09! I don't need her or the others. But the friends that have stuck around are fab. My family are also very good. They see the changes in me (but also see the improvements too over the last 2 years) and my hubby notices my fatigue starting before I do and always asks me if I'm getting tired. He'll make our apologies and we leave. When I'm at family get togethers they don't blink an eye now when I disappear for a snooze or just go for a lie down.

But I have told them that a SAH is a stroke and this seems to get through to them, that although I look very well my recovery is still on going!

ps have just found Jen's link to article on fatigue, excellent!

Edited July 31, 2011 by Liz D

[winter]

It is unfortunate that many of us have lost some friends along the way, in our recoveries. Actually "they" are the ones who are losing out, not us. I've found that the people whom I no longer see were never really good friends to me, but I was a good friend to them!

I've struggled with trying to explain the after effects of SAH - have informed people that it is a stroke, it does cause brain damage or varying degrees along with many other symptoms. Many don't want to understand or maybe just don't care... it doesn't affect them so why bother!

I've got a small handful of loved ones and a few friends who "get it" and of course I'm thankful for that. But the biggest support I've received has been here at BTG!!! Thank you all so much for being here Truly I don't know where I'd be at this point without all of you!

I am going to go to some of the websites/links from BTG and send e-mails to some local hospitals so they can see some examples of booklets/pamphlets some of you did receive before release from the hospital. My neurologist and GP could certainly use some insight as well! Might also be good to have for people fighting for disability income - since a good majority of the medical professionals don't seem to have access to these I'm sure the social security disability people in US don't have a clue!

Good thread here - hang in there and know your 'real' friends are still with you, the others who've gone weren't worth your time or energy!

[Riane]

Wow! It's great to hear that so many of you have received good information (and some support) from the hospital, your medical providers, or social workers and other professionals.

I am continually astounded by the ignorance and lack of information that I am getting here on this side of the pond. Perhaps, as Sandi K mentioned to me, it is because of having a more concentrated population that the medicos have more information over there. Here, in Canada (and it is sounding like in the US) the info is amazingly limited.

I spent most of Friday in the hospital again, trying to find out if I had a re-bleed. Without getting into details here, I did have the fortunate experience of hearing the Emergency Room doctor say, "no wonder you are experiencing all those symptoms, you have had a brain injury and those are classic brain injury symptoms." It was like the clouds cleared and the sun shone (not in a too bright way!) I was so relieved to FINALLY hear a doctor say I've had a brain injury (my own GP refuses to entertain such silly thoughts). On the negative side, when asked about his experience with what happened to me, he admitted that he's never heard of PM-NASAH.

Sadly, this doctor does not maintain a private practice anywhere, he is exclusively an Emergency Room doctor. I asked.

Where I live there are no pamphlets on NASAH. There may be pamphlets on aneurysmal SAH, but since that is not what they think I had they didn't give me that publication at that hospital.

Because the medically accepted long-term prognosis is so good for me there has been no follow up care offered (again there may be/likely is (I hope) for folks with anuerysms). No social workers, or other folks to help educate me or help me navigate the systems that I now have to find my way through (trying to get disability support, etc while I focus on recovery).

Once again I am left happy for all you folks in the UK/Europe who have such civilized sounding medical care. I'm sure it's not perfect, but when you get down on its imperfections just remember that it can be worse and is over here in North America.

[JayKay]

This is a great thread! I have decided that I am having such trouble understanding how little I can do, how changed I am etc, that it's no wonder those on the outside find it impossible! I must say we had great support at the National Hospital and I was given the excellent pamphlet that you can find on the Brain & Spine Foundation website. I was told to get my family to read it too, and I'm glad because it's very detailed. I also had great support from the Stroke Association with their leaflets, and Different Strokes with theirs! I feel I know an awful lot about SAH now lol.

I have also been invited to a series of workshops at the National, with the vascular nurse and the psychologists because they want to see how they can help survivors with after-care. I can't wait - the first one is on Wednesday afternoon. I will definitely suggest any conclusions they draw be published and maybe rolled out around the country....

Maybe I've been lucky but I do have a bunch of very very good friends, who all keep an eye out for how tired I'm getting and who are all very supportive. It might help that lots of them work in the NHS (as I do/did) and my other friends are involved in Community work and disability.....

What's that saying? Those that matter don't care (what you're like) and those that care don't matter......!!

[Riane]

I downloaded the pmaphlet from the brain and spine foundation.

Would love to get the leaflet from the Stroke foundation and Different Strokes. Maybe I'll check out their websites. When I have the eneergy.

It sure sounds like you folks have great support on that side of the pond. Makes me more frustrated to see how little support we have over here.

Honestly, there is no follow up that has been suggested to me. I've been asking for something, but there really is so very little. My doctor is sending me to a pshyciatrist (and I've finally agreed) and that's all that's available to me.

Perhaps that's becuase I had a NASAH. Perhaps they have more support for aneurysmal SAH's.

I honestly don't know. It boggles my mind.

[Bill B]

You weren't there man!

That seems to sums it up for me.

All the specialist nurses and clever councilors can provide all the paper-based support in the world, but it means, not a jot, to all of us that have faced

the reality of brain trauma.

Riane is right to champion the production of an, experience- based, information leaflet.

A leaflet that could explain all the convoluted intricacies of the infinite symptoms that affect our daily lives.

Where do you start?

Life is unthinking,predictable and instinctive.

Then,... there is the event!

All of a sudden, life is introspective and analytically, everything that went before is a distant memory of normality.

Nothing can prepare you for this journey, no medical expert can explain what has happened to you.

The only people who know what it feels like, to have your life ripped from underneath, and rearranged in such an individual, personal manner, are people

who have experienced the same trauma.

Everyone of us is different, we all have alterations to our lives, and some of us are lucky enough to have support networks to help us through.

Some of us are shoved out into the real world, with, only a, "your lucky to be alive" dismissal from the medical fraternity.

I don't know much, but this much I do know!

The Neuro- surgeons and specialist follow-up teams are expert in there deliverance of physical repair, but totally useless in deliverance of aftercare.

Vulnerability, paranoia, depression, lack of self- esteem, limited -time feelings, fear of re-occurrence and, bone deep, tiredness are the legacies that we all live with, day to day.

Where is our leaflet?

Where is our help?

We,...are our help!

Only people who have experienced an event can offer insight to others.

Riane , if you can articulate some of this in a leaflet, I will help, in any way I can.

We all seem to speak with one voice upon this site.

The medics don't understand the consequences of our individual, catastrophic, traumas and dismiss our concerns because we are fixed, and should

"just get better".

I am nearly seven years down the line now, and have no more come to terms with anything, than the day I left hospital.

You weren't there, man!

Well,....... yes, we were!

All of us, on this site.

You know, no-one else is going to help us,.... don't you?

All we have, is each other.

We were there, and now we are here.

For each other.

Bill B. x

[Leo]

Dear John,

I totally agree with you about the campaign but for differing reasons.

Luckily, my friends and family have been an unflinching tower of support over the past three years but I think the bigger issue for me is my wider community, especially in terms of employers and work colleagues.

It is definitely a case of "You look OK, so you must be OK". I think despite, initially, the best will in the world, patience does run out because people do not realise that it feels like we are running on empty for the most part. I had no idea how much energy it took my brain to perform even the simplest of tasks before my SAH. Now staying on top of everything is incredibly hard. The fatigue from the effort is relentless.

I'm really sorry that your friends have let you down. Especially after the effort you made.

Let's start a campaign to raise awareness of closed brain injury!

Leo x

[Winb143]

My pals say how well I am coming on...I feel lifted, but it has taken from July 2009 to Sept 2010 over a year to remember what

happened to me. ..ie why did I get so many germs attack me in hospitals....I asked the Surgeon this,he replied

"when you go into the brain you get germs"...so why did they put me in normal ward and not HDU....every time time I went to normal ward I was rushed back to HDU...first with ventriculitus then with Sepsis....Finally with MRSA of the skin....

The only thing that kept me going was my brother singing to me...and me chasing after my parents....

But when I saw my hubby and daughter then I knew I had to go back to them and say bye to my Mum Dad and brother Barney

Sorry if this sounds morbid , But I am happy to be alive and with my daughter, husband , brothers and sisters I Love Them All

and They Love me..(sometimes as I can be a pain)

So if you are down remember We Made It and gissa smile

WinB143 xxx

[choccibicci]

Before my SAH, almost 3 and a half years ago, I played for a local pool team (and had done for 15 years to that point); suffering from osteoarthritis of the knee I would somtimes turn up with crutches, however I still managed to play and won a good 90% of my games. When my SAH happened and I was in hospital my wife informed the team captain (a good friend) and initially I was flooded with support. Following surgery I returned to work much sooner than I returned to pool, but when I did I found I was no longer a 'cert' to feature in the team and most often than not was only picked if other players didnt show up. This was hard to acept so I confronted the team before a game only to be met be a wall of silence. The captain took me aside and explained that the other players 'didnt understand' but felt such a 'brain injury' wouldnt be good for the team so I should only be played when the result wasn't that important. I quit that very night and soon after signed for a rival team. We won the league that season and the following season I picked up the trophy for most wins winning 37 out of 40 racks over the season.

To this day I feel that in many games when the opponent knows of me, treats me with a handicap, but in the end its their loss and they usally do!

[Lin-lin]

Thank you for sharing your story choccibicci. I ran the full gamut of emotions reading it!

Have you thought about hustling?! I bet you could make a small fortune!

[Winb143]

Hi Chocci.

I bet your old team are sick as parrott that they let you go................. their loss not yours Chocci ...

Next time you play them make sure you are on top form.......And Go get em Chocci !!! lol

Be Well

Regards

WinB143

Edited August 3, 2011 by Winb143

[SarahLou]

Well, Choccibicci what is your previous pool teams loss will be your new ones gain.

I too have had a hard lesson in learning who my true friends are. Funny how they could visit me when I was in hospital,looking like hell,staples in a shaved head,covered in bruises,a very dodgy left eye which I had no control over etc etc, yet they can't visit or even contact me now. I learnt who my true friends are,one dear friend bought me twister ice lollies on every visit,yum yum yum..helped my recovery no end! Bless her.

So here's to true friends and the ones we make on here.

SarahLou Xx