Introduction from a newbie SAH survivor from the UK

[Daffodil]

Jules, when I made it to my first post pop nativity last year I cried loudly and noisily so do take some tissues!!. I missed the first christmas after as I was in no fit state at that point but when I went I was uplifted to see something so simple and just enjoy the moment and it took on a whole new meaning so I hope you similarly enjoy it.

At least I Stayed at the back so my sobbing didn't embarrass my little darling too much, now with my elder I can do that just by being in the same room and speaking

Glad you are doing ok and sounds like you are listening to your brain and body, keep it up

[julianc]

Jules, when I made it to my first post op nativity last year I cried loudly and noisily so do take some tissues!!. I missed the first christmas after as I was in no fit state at that point

 

Another thing to be grateful for!!!  I won't miss Christmas!  At least I don't think I will.

 

FYI my mother in law is a former seamstress so the children's outfits are always quite wonderful, as are furniture and room decorations that she whips up in a few days.  Yup folks we are THOSE parents that make life hard for everyone else!  Please don't hate us. 

 

I have 2 days to cover the songs with the eldest one.  Which reminds me, I haven't tested my voice to see if its still there.  No reason to suspect I can't do my Josh Groban impersonation but its been a month so.....yup just tested with the NOEL album (fitting).  Still there!

[April]

wow you are so lucky to be up and about so soon. I had this happen July 15. But I was awake for the whole experience. It really scared me. I ended up in ICU in 2 different hospitals for 2 weeks. No operation and they did not find where it happened. Just in the fluid surrounding the brain. I laid on the couch for 6 weeks. No light, no sound, no movement, terrible headache and nauseous. But then over 4 months i gradually got better. But groups of people or noise I cannot do. I really listened to my body. I am very healthy but high blood pressure and now very controlled

 

Please take things slow. A brain injury is traumatic. But in my mind I believed I would get better.

We are the lucky ones being alive and no neurological aftermaths . Feel blessed and this is the best site.

I am writing this from Mexico where we flew 2 weeks ago for 6 months. I feel really lucky to be able to do this.

I am now walking about 5km a day. So everything came back!

[julianc]

I am now walking about 5km a day. So everything came back!

Really happy for you in your recovery.

Was it a gradual day by day improvement or was there a defining day or moment when things seemed to 'click' back in?

How are the crowds now? I haven't suffered an aversion yet but I think my patience with crowded noisy bars has hit rock bottom.

[Winb143]

My voice has got deeper but I do sing (off key) a lot. !!

 

I find singing and remembering my parents and how much laughter they gave me

is rewarding and makes me feel so good about my life as it is now.

 

You keep getting better and smile at least once a day even when down. 

 

I look at my daughter and hubby and I feel so happy xx  Well okay apart from me getting

the hump earlier on this evening.. ha !!

 

All the Best

WinB143 

[julianc]

Good morning all.

 

Potentially another good day after a good night.  Did the milk run with a crying near 2 year old at 1:30am this morning, bathed her in the morning (overflowing nappy demanded it) and prepared packed lunch for the eldest.  No headache in sight or on site.  Long may it continue.

 

Now about to walk out of the house and do a post office run and get a bus into a nearby town for a meeting.  I think I am up to it as I am getting more and more convinced that I fall into the ludricrously lucky 10% who walk and talk their way out of longer term negative NASAH or SAH effects.

 

Please don't abandon me yet as, and you all know, it could all change.

 

Have a good day yourselves.

 

Jules

[Super Mario]

We certainly won't abandon you. Support is what we are here for and support we will give no matter how far down the line. I have said it before, do not push yourself too hard. You may feel fine at the moment but you may fall back with a massive crash. False security comes to mind.

[julianc]

Thanks Super Mario

Rest assured I am not pushing in the sense that there is no resistance to doing these things. I am not like others who go for 5km walks. , hell I couldn't be bothered doing that when I was well! Believe me I am not out to prove anything to anyone or myself.

Just ambling along doing stuff until a signal goes off clearly saying or hinting at 'don't'.

If the signal goes off I head back.

Thanks for the concern though. I am behaving trust me.

[Tina]

Hi Jules

 

Hope your day continued well and you coped ok with your meeting?

Rest up & take care

[Teechur]

Welcome to the club that no one wants to be a part of, but all of us have been relieved to find. I had an unexplained SAH in Jan 2012 and am still recovering. Much like yours bad headache, three weeks in the hospital, and then "Take it easy for a few weeks, then go ahead and go back to your normal life. Headache? That should be gone in 4-6 weeks." We are now...hmmm....148 weeks and 5 days later (not that I'm counting) and I still have a headache.

 

If I hadn't found this site I don't know if I'd still be here because I am not sure I'd have been able to handle what was happening to me with as much humor and class as everyone here has. See I was healthy, physically active, and took (take) exceptional care of myself. I did everything to try to ensure I wasn't going to deal with any lifestyle related illnesses. I had lost 100 pounds in 2002 and there was NOTHING that was going to drag me back into living a sedentary lifestyle ever again.

 

So when I got out of the hospital with just "go back to life" that's completely what I expected, that I could go back to my life exactly as it had been before I left. I planned to return to work the next week (I got out on a Thursday). I returned to my coaching duties as a marathon coach that weekend using a walker. I did not cancel any of my upcoming races (although I had to cancel most of them, but I did complete a half marathon in June using the walker). Needless to say when I did not return immediately to my normal life I was one P-Oed girl! Learning that what I was experiencing was normal helped SO much. At first I was very happy, just felt lucky to be alive, like the world was my oyster.

 

Since then the limitations sometimes get me way way down. I am not as limited as I could be so for that I am thankful. I am back to running and it is the only time that I am almost always without pain. I am back to coaching, although my time is slower, I can still cheer and motivate. My dogs get out running with me a few times a week, which we all enjoy. It's just that work is trying to kill me (I'm a full time teacher) and I'm considering disability or half time at the very least. I love my kids so it is a tough decision to make. 

 

My advice: Rest as much as you can. Do NOT go back to work too early. I mean it. I did and ended up having to take two more weeks off, then go half time. Now each year I use all my sick leave and go into unpaid leave. My health is more important, though. Don't try to be Superman. You will look healed on the outside but people will not understand that on the inside you have at least a full year of healing to do, if not much more. You may feel great tomorrow, that does not mean you should go out and try to conquer the world. It means you should enjoy it, do a BIT more, but save some in the tank for the next day or it might put you into bed three days following.

 

Be thankful and happy when you're feeling blessed and thankful and happy, but it's okay to be down and to feel that way because there is no way that this doesn't suck at times. It's okay to say that out loud and it's okay to feel mad, just don't wallow in it. We've all vented on here and I promise (or at least hope) that none of us will give you the "But you're lucky to be alive" line because you know that. We all know we're lucky to be alive but there is nothing lucky feeling about getting up, managing to brush our teeth and take a wee and put on half our clothes and then be ready to get back in bed for the day! 

 

Go stand in front of the mirror and practice this word, "No." "No, I'm sorry, I can't." "I'd love to, but I simply can't." "I'm sorry but I can't." 

 

You're going to need those phrases a lot because your old noggin will not let you do some of the things you would have said yes to without hesitation in the past. Bites the big one, but it's true. Knowing that in advance prepares you. Much like the family vacation where you had already committed, there are things you might not be able to get out of but at least if you can't, go knowing that you need to be rested and not expend too much energy.

 

I'm not saying you're made of glass. It's not that. In fact one thing I have noticed is that physically I can do nearly as much as I used to do, but mentally things exhaust me more. We just had a four day weekend in the states for Thanksgiving and I ran a marathon and two half marathons. Two of the days I had a bad headache, the third I did not once I was about 45 minutes into the run. That did not wear me out as much as today at work did because of the mental and emotional interaction with my Nerd Herd (I teach IT). I will go home and get out for a run and that will help for this evening to keep me from truthfully wanting to go straight away to bed, plus it will clear my head some. It's very cold today, and clear, which makes for good running weather for my head. 

 

Now granted the Thanksgiving before my SAH I ran all four days, four marathons for a total of over 108 miles and came out feeling great and I'm just not there right now, but I will be back there if it KILLS me! But for now, I am not advising any marathons for you!

[julianc]

Did fine.  Some window shopping beforehand.  Decent enough meeting.  Tiny bit of supermarket shopping afterwards. Bus home.  All good.

 

Was definitely tired.

 

Took to bed.

 

All fine now.  Night night all.

[julianc]

Be thankful and happy when you're feeling blessed and thankful and happy, but it's okay to be down and to feel that way because there is no way that this doesn't suck at times. It's okay to say that out loud and it's okay to feel mad, just don't wallow in it. We've all vented on here and I promise (or at least hope) that none of us will give you the "But you're lucky to be alive" line because you know that. We all know we're lucky to be alive but there is nothing lucky feeling about getting up, managing to brush our teeth and take a wee and put on half our clothes and then be ready to get back in bed for the day! 

 

Go stand in front of the mirror and practice this word, "No." "No, I'm sorry, I can't." "I'd love to, but I simply can't." "I'm sorry but I can't."

 

Teechur, I have only quoted part of your post but I devoured all of it with great interest.  I think we should create a section with nothing but short stories of each person's experience after the 1st year or 2.  No more.  No thanks or comments just pure stories.  Perhaps graded according to the doctors' qualification of each SAH.  Just an idea.

 

I am heeding the advice Teechur.  Your handle make it feel like being at school.  I am taking each day as it comes, and ready to stop or not commit if it is too much of a stretch.  Trust me when I say I have no problem saying "Sorry that simply won't be possible" with an optional "I've had  brain surgery!  You're lucky they raised my tolerance while they were there".  I jest.  I do a lot of that.  But I did that before too so its good... or so I keep/kept telling myself that.

 

I agree that overdoing it one day might cost you three.  Seen that already after the weekend away a week ago.  A few hours of sleep avoidance cost me the next day.  I do notice however that the sleepyness doesn't feel the same as it did in the first 4 week post surgery.  Previously I was almost like an inflatable toy whose big vent had been unplugged.  AN IMMEDIATE TIREDNESS.  Now its much more like it was pre NASAH.  Also its more like normal in that (and forgive me if this is just me) it starts in the eyes rather than hitting you in the head.  I might expand on that later but I hope it resounds with others.

 

Our health and benefits system here in the UK, although not ideal, does provide a certain amount of cover from which, whilst handy, I have no intention of benefitting.  Oooh look at that!  I skillfully avoided ending on a preposition!  Please indulge me I can sometimes be a bit of a grammar pedant!  That much has not changed.  Oh and our work holidays are separate to our sick leave, which I believe can be different in the USA.

 

So when I got out of the hospital with just "go back to life" that's completely what I expected, that I could go back to my life exactly as it had been before I left. I planned to return to work the next week (I got out on a Thursday). I returned to my coaching duties as a marathon coach that weekend using a walker. I did not cancel any of my upcoming races (although I had to cancel most of them, but I did complete a half marathon in June using the walker). Needless to say when I did not return immediately to my normal life I was one P-Oed girl! Learning that what I was experiencing was normal helped SO much. At first I was very happy, just felt lucky to be alive, like the world was my oyster.

 

Since then the limitations sometimes get me way way down. I am not as limited as I could be so for that I am thankful. I am back to running and it is the only time that I am almost always without pain. I am back to coaching, although my time is slower, I can still cheer and motivate. My dogs get out running with me a few times a week, which we all enjoy. It's just that work is trying to kill me (I'm a full time teacher) and I'm considering disability or half time at the very least. I love my kids so it is a tough decision to make. 

........

Now granted the Thanksgiving before my SAH I ran all four days, four marathons for a total of over 108 miles and came out feeling great and I'm just not there right now, but I will be back there if it KILLS me! But for now, I am not advising any marathons for you!

 

I was never one for massive physical activity so in that sense I cannot judge if my personal best times in the quarter/half/full marathons have changed.  Never done one, and have no intention of doing one.  It also means on that subject area at least I cannot bring myself down because I cannot perform as I did previously.  I am however in sales and marketing and so any effects on my personality or memory would show themselves up pretty soon.  We shall see on that front, initial feedback has been good, nay excellent.

 

The last 3 days have shown a marked improvement in wakefulness although a daytime sleep is still appreciated, was it not ever thus?  Last night I made it through without waking up.  Partially thanks to my little ones who kept any noise to one beneath my threshold.  I do sometimes think that the waking up is simply due to drinking almost a litre just before going to sleep (approx 2 pints). That's a lot to carry around!

 

This morning was our eldest's (almost 4 years old) nativity where she played one of a chorus of angels.  It was lovely.  I didn't cry.  As main family photographer I am normally relegated to being behind the viewfinder and this was no exception.  Back of hall.  DSLR in one hand, miniDV HD recorder in the other.  I shall be making a recommendation to the school to appoint a professional or a keen parent to undertake that on behalf of all the parents.  1 in 3 parents I think were viewing the nativity on their smartphone!

 

Now doing some home admin stuff and preparing a presentation.  Thank you again for the great advice and superb post Teechur.

 

Jules

[iola]

Hi,

I do hope you are still feeling well. Pace yourself please. I am a big over achiever and there are times I feel great and times I am totally exhausted. I started working part time at 4 months and that was way to soon. I wanted to be better and show the world I could conquer this terrible thing that happened. Well, the world really did not care and I ended up with terrible headaches.

 

I'm not saying lay in bed and do nothing, that absolutely does not work but do rest when you need to rest. It's hard with kids, I know. Mine was 7 when it happened to me and after the third week I had to get up every day and get her ready for school. Pretty hard thing when you feel like you have an elephant is sitting in your head.

 

My doctor told me 12 to 18 months to feel "normal" again but not to compare to who you were because you were no longer that person. Well, 18 months has come and gone and I'm not who I was in many ways. You will begin to discover this new person you will need to get to know.

Iola

[kpaggett]

It always seems like people with SAH have to start life again from scratch.  We're not given information or rules to live by or any expectations.  It is so hard to be in the land of unknowing.  I would have liked it if someone had just told me that I was even in this strange land.  At least I would have known SOMETHING.

 

At first you really feel that socializing is one of the most tiring things.  This gets better or you tend to know your limits better.  One good thing about this is that you begin to realize what is important to talk about and with whom.  Silly discussions with far distant relatives or acquaintances fall away and Good riddance anyway.  As you get further along, your ability to process information faster helps this too.  Right now, keep it slow and keep it really real.

 

~Kris

[Teechur]

My doctor told me 12 to 18 months to feel "normal" again but not to compare to who you were because you were no longer that person. Well, 18 months has come and gone and I'm not who I was in many ways. You will begin to discover this new person you will need to get to know.

 

When my doctor told me this it absolutely devastated me! I really did think I'd get back to my old life. I am accepting it more that I may never be that old me, but part of that life I absolutely want back. I particularly want back my Sporty Spice part. That's my main focus because my running feeds my soul and my doctor supports it. In fact, it is part of my prescription. She encourages all of her patients to run and lift weights as part of their self care program. 

[julianc]

When my doctor told me this it absolutely devastated me! I really did think I'd get back to my old life. I am accepting it more that I may never be that old me, but part of that life I absolutely want back. I particularly want back my Sporty Spice part. That's my main focus because my running feeds my soul and my doctor supports it. In fact, it is part of my prescription. She encourages all of her patients to run and lift weights as part of their self care program. 

 

Neither my consultant/surgeon (with whom I never actually spoke 1 to 1), any of the doctors/consultants at the hospital or my own doctor from the local practice has said anything about expectations of what I should be getting back in terms of life.  Nothing.

 

Only behindthegrey forum members have shed light on that murky subject.

[julianc]

end of day 37

 

No headaches

Minimal tiredness (2hour shut eye at 2pm)

Tiredness is still starting in the eyeballs unlike immediately post NASAH

 

So far so good.  Night night all.

[iola]

Teechur,

Some folks say they like their new life better. Well, I'm with you. I miss so much of who I was. I am blessed by clarity and pure reality I am not immortal. Life is fragile. Bad things really do happen to good people. I am so much closer to the Lord and for that I am eternally grateful. No pun, really eternally grateful. That is refreshing to me. But, I miss feeling my old 100%. I have a new scale now I measure my "feel good" days with. There is always something not quite right. I am active and walk/jog, cut grass, garden, run up and down stairs, etc...Running still hurts my head though. I swear sometimes I feel my brain moving around.

 

I believe most of us do have some type of epiphany after surviving. A new meaning to life. A new sense of direction and a road blinded to us that continues to reveal itself in bits and pieces. Well, that's my philosophy.

 

Now, if I could just remember simple things like what someone said 3 minutes ago.......

Iola

[Teechur]

Neither my consultant/surgeon (with whom I never actually spoke 1 to 1), any of the doctors/consultants at the hospital or my own doctor from the local practice has said anything about expectations of what I should be getting back in terms of life.  Nothing.

 

Only behindthegrey forum members have shed light on that murky subject.

 

My original neurosurgeon and my second and third neurologists both said I'd be completely normal and I believed them. I wish they'd been honest when the reality is that only 15% of people return to a completely symptom free life. I think if I'd been told from the start that I might not return to my previous state of health I might have been more realistic in my expectations. At the same time, that probably would have just made me more driven (because I'm like that) to return to normal. I do live a pretty "normal" life for most people. I am way more active than the average American, which makes me doggone proud!

[Winb143]

I like the new me apart  from the walking bit.

 

I am glad (being selfish) I do not listen to others problems as I don't think I could

take their worries, head hurts.

 

We must be stress free if possible !!!

 

I do sound selfish I know but if it gets me better !

 

Be Well All.   Oh and someone said to me " Do not lift heavy bags" so beware of weights.

Regards to All

 

WinB143 xx

[julianc]

My original neurosurgeon and my second and third neurologists both said I'd be completely normal and I believed them. I wish they'd been honest when the reality is that only 15% of people return to a completely symptom free life. I think if I'd been told from the start that I might not return to my previous state of health I might have been more realistic in my expectations. At the same time, that probably would have just made me more driven (because I'm like that) to return to normal. I do live a pretty "normal" life for most people. I am way more active than the average American, which makes me doggone proud!

 

I feel like I can't LIKE your post because I agree you.  All levels of neurosurgeons (1st, 2nd and 3rd) should have been more honest or kept their ill informed opinions to themselves.

 

How can this be allowed to happen today?  All they need to do is record a video, update it every quarter to take into account any advances the establishment makes in treating SAH then give patients a link to it and this forum.  Done.  No time wasted.  No false hopes created. Realistic expectations set.  Helpful support ensured.

 

Grrrrrrrrrr.

[Teechur]

LOL Iola; literally LOL. My memory is SO bad since the SAH but it might be the meds (Topirimate). I agree that I had every single one of the epiphanies you had and feel EXACTLY like you. I am closer to God, I see beauty in everything. I seriously NEVER sweat the small stuff any more.

 

One of the eternal blessings of this situation is that I simply can't give in to stress and drama, even though I worry that sometimes on this board I come across as negative. I tend to come here to vent because all ya'all "get it'. If I get stressed, my head hurts worse so if it starts I just say "Tory...let it go!" and I do! I am so freaking calm I'm almost TOO calm at times, but it's wonderful. I don't often snark, I rarely lose my temper, I am just zen. 

 

But like you I just don't feel like me. I remember asking a friend who also had an SAH about a year before mine, when she started to feel normal again and when she said she still didn't, it really was an eye opener. She still has headaches as well and she's almost four years post.

 

I am SO glad you're doing so well Julian!! Love reading your progress, even if your photo squicks me out a bit every time I see it.

[Teechur]

I feel like I can't LIKE your post because I agree you.  All levels of neurosurgeons (1st, 2nd and 3rd) should have been more honest or kept their ill informed opinions to themselves.

 

How can this be allowed to happen today?  All they need to do is record a video, update it every quarter to take into account any advances the establishment makes in treating SAH then give patients a link to it and this forum.  Done.  No time wasted.  No false hopes created. Realistic expectations set.  Helpful support ensured.

 

Grrrrrrrrrr.

 

I agree! My current neurologist, who is at the University of Washington Medical Center in the Headache Clinic, and continues to her  education CONSTANTLY could not believe that A) I was given a timeline for any kind of healing. She said the brain heals at its own rate and there is no "typical" way anyone heals. Bones heal at a typical rate. Brains do not. that I was told I could resume my 'normal' life because there is never any guarantee with a brain injury that a person will return to the life they lived prior. They may be impacted in some way forever, or they may have, in some way, a better life. 

 

I swear if I were independently wealthy I would start a TBI outreach for patient advocates. I remember a nurse practitioner coming in and giving me some information on vasopasms, which I really appreciated. She also gave me information on my bleed that helped me to understand what was going on. My neurosurgeon was not happy about that. She said it shouldn't apply to me because it probably wouldn't happen and I shouldn't even worry about it. Well then why was I in the hospital and being doppler tested 3x a day if not for vasopasms? I am not a stupid woman, so don't treat me like one.

 

My current doctor actually assigns reading, gives me books to read (medical books for med students), and knows that I want to participate in my healing, not just sit there and say "Fix me." She knows that if I am given an assignment, I will follow it but if I have a question, I will ask it. I just wish that someone had been there to say "Wait, she needs to know this about her situation..." because the only people who told me anything were here and my PT who had worked with TBI patients, but that was well after I was out of the hospital and completely confused with what was going on.

[julianc]

Maybe we should leave the surgeons to surgery and just appoint a new kind of consultant that advises on post hospital life and care. Nothing else. Just the off boarding. A member of staff who is informed by constant referral to former patients and not an old text book or ill founded supposition or wishful thinking. Facts based on real life from that facility.

Good mind to put it up on the UK government's petition site. Any UK members agree?

[jess]

Well I cannot comment on other people's neurosurgeons however mine never gave me false expectations he was very good at his job and I will always be grateful to him for giving me my second chance. Keeping in touch with my Dr's, midwives all through my pregnancy, his dedication and caring manner needs alot of praise xxx