The Struggle is Real

[PJ-ND]

I am not quite 4 weeks out from my SAH, 1/6/2017. I have no 'deficits' according to the medical professionals. I do get that I am so lucky to not have had a lot of complications that could have happened, but it is a struggle right now.

 

I was in the ICU for 9 days, and then discharged. I was able to return to work 4 hours a day  less than 2 weeks after my SAH. Now that I am almost 4 weeks out, it fees like it is getting harder every day. I have not had a minute without a headache. 

 

I still have a lot of nausea  when the headache spikes, and I am sleeping about 12 hours a day, even though my sleep at night is very restless. I am finding some short term memory issues, and I have a hard time concentrating at work, even though I used to be a master at multi-tasking and juggling many demands at the same time.

 

I am so glad to find this group, but in a way it is daunting and depressing to see people still struggling so much after one year, 2 year, 3 years. I don't think I have come to terms with the fact I will have a new normal, and never be how I was before. It scares me.

 

I have a disabled husband, I am used to being the care taker. I work full time, I have the medical insurance because of my job, I was barely keeping up with my house, my dogs, my job, my dad in assisted living, my vision impaired adult child, all my responsibilities before this happened.

 

I can hardly do anything right now except work my 4 hours a day, 5 days a week, and rest every minute of every day that is left over. I have no idea how to deal with this. my life does not fit into this level of activity. 

 

I also did not have a good experience in the hospital. Doctors telling me I was so critical because of the risk of additional bleeding and my blood pressure being out of control, but then i had nurses making rude comments to me like I didn't need to be in the ICU, my life flight to their city 2 hours away from home was a waste and similar kind of statements.

 

Then there were a few days in a row in the middle of my stay my pain was out of control and it felt like I was not getting what i was prescribed for pain. After the 3rd day of this, I begged and pleaded with the critical care dr. and charge nurse to please help me.

 

FInally my pain meds were increased, and I had some relief. When I was discharged, I got almost nothing but Tylenol to control the pain, I had to use pain pills from a previous surgery that were a year and a half old for 3 days because no one in the medical facility I was discharged from would help me.

 

I finally went to my local Dr. and he helped me with pain management and medication for my nausea. He has been my life saver. Seriously, I feel traumatized by my experience with the medical facility. And my normal dr. is telling me my body has been through a lot of trauma and I should expect recovery to be slow, months long.

 

It is so hard, I keep hearing how great  I look, I fear that because there is nothing visible on the outside, coworkers and friends think I should be back to 100% by now, My family is awesome, they are telling me I am not taking it slow enough.

 

I was just not given any information from the hospital except "'resume your normal activities,( including work), as tolerated". Any time we asked any questions, that is the only answer anyone would give us.  I have had to 'google' my questions to feel like I know anything about what to expect from here on out.

 

You know, as a rule I don't like to find my information from the Internet, but it has been a valuable tool for me since I have been discharged.

 

I feel lucky to be alive, to not seemingly have many long term issues except the headaches and fatigue. I am blessed, I truly am. Why do I feel so much anxiety and frustration? I still can't believe this happened to me. I look in the mirror and look the same, but yet nothing is the same as it was before that day. And will my head ever stop hurting?

[jess]

Welcome to btg sorry you are still struggling but it is early days for you drink plenty of water and rest whenever you need to xxx

 

I am so sorry that they treated you the way they did in hospital hope things improve for you soon xxx

[ClareM]

Hi

 

It sounds  to me that you need to STOP. Full stop. No work, no helping others no housework just rest and helping yourself. 

You are only four weeks out from a massive trauma to your brain,  it is going to take time before you reach the point you may be able to call your new normal. 

 

 I cannot believe the crass way you were treated in hospital. A bleed whether caused by an aneurysm or not is a bleed.

And it is the blood that causes the damage and subsequent fall out.

 

Sounds like you are lucky with your local doctor. Listen to his words, he is right it's going to be a long haul. 

 

Please see if you can find more help at home and consider not working at all for at least a few weeks. Your brain needs time to recover and by resting and drinking plenty of water you will give it that time. 

 

I so feel for you and hope you will be able to find the help you need. We understand here on BTG so come back for advice and compassion when you need to.  We don't think you are a fraud, we've been there and know the script. It will be a long haul but you'll get there and hopefully you'll get there quicker if you stop now and take some time. 

 

Keep in touch 

Clare xx

[Tina]

Hi 

 

A very warm welcome to BTG.  So glad you found us.

Bless you, it is such early days for you in your recovery. 

 

I agree with Clare that you should stop working and take time to recover. You body is telling you to slow down. Your body has had a major life threatening trauma. Go and see your Dr as it sounds like he understands and explain how you are feeling. Ask him to sign you off work. it is very hard as you say, when you look well on the outside to others.

 

I also can't believe the way you were treated in hospital !   Sadly It seems most of us are discharged from hospital without any information on recovery or support. What you are experiencing with the headaches, anxiety and frustration is all very normal, especially at only a few weeks in recovery.

 

Things will get better, it just takes time. Listen to your body. 

Keep  in touch and let us know how you are doing. You have certainly come to the right place for lots of information and friendly support to help you with your recovery.

 

Take care

Tina xx

 

[kempse]

Hi PJ-ND - A warm welcome to BTG. I'm glad you found this site where you will at least be in the company of some warm, helpful and compassionate people, who unlike those nurses will not judge or make rude comments 

 

People on this site are understanding and that's because we know what it's like to have suffered a bleed on the brain or know someone who has and we also know that whilst everyone's recovery is different, it can be a long, slow and frustrating process.

 

It appears that whether you are in the UK or US, the lack of support and information regarding recovery is not at all as it should be.  That's why this site that Karen created is such a godsend for so many who have been thrown into this turmoil world of sah.

 

Like Clare said, if at all possible, the best thing would be for you to stop trying to do all that you are in order to give your brain the best chance.  I escaped a lot of the deficits that one can have from a sah, but even I took 5 months off work - and then I still needed plenty of extra sleep when I did return. 

 

Things definitely improve with time -  you are still in the very early days and I do think you would benefit from doing less now to give yourself a better chance of being able to do more in the future.  

 

Wishing you all the best,

Sarah

[Misty]

I am also just 4 weeks after a ruptured aneurism and can sympathise and relate to how you are feeling right now. I am shocked to hear that you are back at work and like others have recommended,

 

I would say that it's far too soon to be returning to work, I couldn't imagine being able to do that with the way I am feeling right now. Ask your Doctor for a sick note and stay off work for as long as you need.

 

I went to a computer course last Mon thinking I was ready to return, but the concentration made my headache even worse, and has been intolerable since. I realise that I am just not ready for that level of concentration so have decided to put it on hold for the time being. It could be that work is actually making your headache even worse.

 

You need to be home and resting as much as you can for as long as you can. All the best with your recovery.

[Macca]

Hi and Welcome to BTG.

 

Wow!!!  You sound like Wonder Woman!  However, in reality you are not, so stop beating yourself up.    But you are wonderful.  You are one of those wonderful people who looks after everyone else before yourself and often to your own detriment.  Now that you need help, it is time to re-appraise somewhat and be a little more selfish in your outlook for a change, at least until you are better.

 

Let's look at this a little more critically.  You are only four weeks out from a potentially life changing event - no time at all.  Change has been thrust upon you suddenly and before you were ready for it.  If someone had warned you it was coming you could have put some measures in place, but that did not happen.  It was unexpected and caught you by surprise, like the rest of us.  Welcome to the club!

 

What has happened, has happened.  You can't change it, but you can change and shape the future and how you deal with it.  Change happens, just usually more gradually and you absorb it and evolve as it happens.  In this case, the change has been sudden and caught you napping.  Look forwards not back.  Learn from it, don't dwell on it.  There is much to be positive about.

 

Understand that your brain has undergone a major trauma so don't underestimate what happened, or its effects on your daily living.  You are back from the brink of oblivion because a surgeon was able to save you from crossing the threshold.  Just because you can't see it doesn't mean it didn't happen.  Go to a local garage - there are plenty of cars there that look ok on the outside - they still look like cars -  but that are not ok because they don't run - that is car hospital!

 

I didn't go back to work for six months and that was too early.  You are back there already and I would say you really need more rest - four weeks is nothing and is not enough, in my opinion, to repair yourself, but you must consult with, and stay in touch with, your doctors and follow their professional advice.

 

Probably the two most critical organs in your body are your heart and your brain.  They are your core as far as functioning as a human being are concerned, so when they've come under attack, they need nurturing and nursing back to health not cajoling and bullying!  Fatigue, short term memory loss, headaches and nausea are common in people following SAH, so follow doctors advice and don't worry too much about that unless they become abnormal,  Hopefully they will ease in time.

 

Just keep in touch with your doctors and manage those issues you have as best you can until your body heals itself - over time.  Experience tells us repairs take time, they are not instant, sadly.

 

Are you in a position where you can re-appraise your responsibilities at home?  Your family sound great so can you call on them for a little more assistance, at least in the short term, to give you the space to get better?

 

It's a chance to see if you can de-clutter your lifestyle rather than plod on in the same old way!  If you do what you always did, you get what you always got - so change it if you can.  You may need to be quite ruthless about some things, but as I said earlier, you need to do what is right for you now. You've given all you can and now it's time for others to roll their sleeves up and give a little more and some respite to you.

 

Those are nurses?  I feel like I want to shake them by the throat!  They above all, should know better.  It is clear from what you say, they know nothing of the experience of a SAH.  If you were to go into your local supermarket and pick up a box of eggs - it looks great from the outside doesn't it? - but before you put it in your basket, you open it up and find one egg is broken and the yolk is spilling out into the box.  What do you do?  You close the box and put it back and get another box.  You don't close it and put the box in your basket and pretend nothing is wrong, do you?

 

That is what has happened to your brain, but you can't put the brain back and get another, it is the only one you have, so you have to repair it instead.  It takes time to do that and the repair has to be given time to set so that it is as fully functioning again as it can get!  I would say to your nurses that they should have a look around this site and understand what a brain injury really means to the patients and their families!

 

As for your co-workers - they are probably just ignorant of the facts as this is quite a rare event - so educate them, and keep on telling them.  Just because there is no plaster cast doesn't mean there is nothing wrong.  If they can't - or won't understand then that is their problem, not yours.  Remember colleagues are not necessarily friends and you can cut them out of your life if necessary.

 

You are right - you are lucky to be alive.  You were lucky to be alive before your bleed, you just didn't know it then.  Now you do!  So embrace it, look for the new opportunities that are coming your way.  They aren't always obvious but they are there if you look for them.  Every day is a bonus for you now so take advantage of it and never take life for granted.  it is what you make it - so make it good!

 

I wish you well,

 

Macca

[subzero]

Hello and also a warm welcome to the site.

 

As everyone has said, you are in good company and you will get much support from people who have experienced SAH themselves or who know and care for someone who has.

 

Please heed the advice from your `awesome` family when they tell you to slow down and think of yourself as you recover. Advice backed up by those who have posted already. Please give yourself every chance to make progress by accepting that your brain needs rest and TLC. Trying to get back to normal will invariably set you back and give you added frustrations and anxieties.

 

I hope your disabled husband is coping with what has happened to you, It is always traumatic for those closest to you, and I am sure more so if your husband may not be able to provide the physical support you need for the months ahead.

 

Take care and keep us updated with your progress.

[Graham Oxburgh]

Hi PJ-ND,

 

So sorry to hear of your trauma and disgraceful treatment.  Sadly lack of quality, or any, information seems to be a thing many of us have experienced following a SAH.  I am astonished you are back at work so soon.  Like you I had no obvious defects and was discharged from hospital and it was only months later that I began to discover and accept that something had changed.  Nearly everybody said, "you look so well", and I felt pretty good.....until I tried to go back to work. 

 

Doing nothing was absolutely agreeable for me, but when I started to try things that required concentration (like work) I have come to realise I quite simply do not have the same amount of juice in the tank.  Long before a day's work is done I will find I am losing concentration, starting to get sloppy in my thinking, and can get a sore head.   The thing I still find hard to accept is that something has changed, the evidence is there, but I keep wanting to kid myself on that I am capable of the same as before.

 

So my advice is....listen to people on the forum.  Listen to your doctor.  Rest.  Be realistic with yourself, don't listen to that voice that says, "just get on with it."

 

Hope the stress of caring for those around you does not get to you.

 

Do take care.

 

Best wishes

 

Graham

[Winb143]

Hi PJ,

 

All I can do is ditto what others have put xx ie drink water as it helps head.   Perhaps ask you to read this and imagine if your brain could speak to you  xx

Now take it easy and I know you have a lot to contend with but I find not to listen to Doom and gloomers tales, rest up when you can and listen to your body.  I find a smile helps me to get through rough times.  Perhaps one day you can and will smile again and no stress my surgeon said. So I sing when down xx poor you, you have yet to hear me sing/type a song out xx

 

Wishing you well

Winb143 xxxx  Welcome to BTG xxxx

 

[Chris G]

Welcome to the forum.  I am also saddened by your struggles and send you prayers.

 

As has been said above, one of the things you quickly learn to do is to listen to your body.  Headaches, fatigue, moods are all symptoms you need to slow down and heal.  I was pleased to see your family is being supportive.  But don't be surprised if even they, later, start to move on and expect you to as well.  As Macca mentioned, since your injury is internal, people cannot see it , and thus can't appreciate it. 

 

Yes, there will be a "new" you, but there are good things that come with that too.  Some of us have a different perspective on life, love and faith since our bleeds.  I suspect as you continue to heal, you will find some inter peace that you may not have even had before.

 

But as of now, it is very early.  Please go slow and rest often.

 

Chris

[PJ-ND]

Thank you for all the kind comments and input. I do feel like maybe I rushed going back to work. I am not sure how to undo that, but I did ask to meet with my director and my HR department. I will see what they are willing to do for me. They have been supportive so far, and like everyone else, they were so surprised I was back as soon as I was, even though it is part time.

 

i definitely see that my headache gets worse when I try to do too much. Today was a pretty good day after 2 very rough days. Maybe I jus felt better after finding this site and seeing all the support. Seriously, it is the first time I have not felt so all alone with the symptoms and anxiety.  I hope down the road I can be helpful to others too.

 

My husband has been stepping up as much as he can. I have a feeling we will have to make changes to our lifestyle. I am trying hard to let myself take the time I need to heal. It is a challenge.  

 

I have had a great side effect, I did smoke, but not only have I not had one puff since my SAH, it is like the part of my brain that craved them is just gone. I don't desire one, need one, think about one, it is just gone. I am super excited about that. 

 

I will I'll keep on making my way through the information and posts from this group. Thank you for the warm welcome, so glad I found this site! 

[Daffodil]

PJ, welcome. fiRstly well done on getting off the cigarettes, that's a big deal!

 

i am hoping that your work will be happy to look at the fast return you have made and maybe together work with you to adjust it down so it is a little more paced over time and eased back in to things.  Talk to them about adding in extra breaks when you can just take yourself off and sit quietly and have some water.

 

are you driving to work too? When you get in the car to go anywhere in these early days post bleed  that's going to use lots of cognitive energy so just pause and take a few minutes just sitting and composing yourself before starting any journey. Settle yourself, and put a pause in.

 

i am hoping you get the opportunity here to reset the pace of a few things, you may have rushed back at life full of the adrenaline of survival but now you need to get down to the lengthy business of invisible healing so be gentle with yourself and turn your dials down a notch.

 

Most stuff can wait I have found, it can be done slower or later or differently. Give something your full attention rather than try to juggle tasks, make lists of what you want to get done or remember and be realistic, don't overstretch all the time. Give yourself a break. 

 

If you do do something then afterwards rest your brain and give it a moment and the time to recover from what it has just done. Think of physical training in a gym ,  you can't just go from machine to machine without rest breaks for muscles. Everyone gets that, well your brain is a muscle and you hurt it so it's going to need more frequent rests and refresh opportunities. 

 

The good news news though is that if you do all that then hopefully you will over time find your level of healing and  recovery and explore new ways of doing things and who knows maybe even enjoy it a little more. 

 

Good luck. 

[Josie Rosie]

Hello PJ-ND ,

 

I am in early stages as my haemorrhage was day after yours . I really don't think it's wise to be working just yet ,could you take some time out of work ?  It's a good place here for advice and support because everyone knows how you feel and can offer their experiences to help you . All I know is it's early days for us and time will heal . Just be kind to yourself and keep in contact with friends and family as talking helps . Rest as much as you can and take care .

 

 

Best Wishes Josie

[iola]

Hi,

 

I had had mine almost four years ago and I know where you are right now.  Mine was non aneursymal, which I've learned simply means there were no aneurysms found on the major arteries. Still a bleed from some where, which the doctors believe was venus/weakened vessel.  Still hurt like hell, and, to this day I still get what I call the, "here and there days" when out if the blue my head feels pressurized and heavy or i get this smack of dizzy that scares the socks off of me.

 

I returned to work four months after mine and I can tell you that was too soon.  I still work but it's not the same, I am not the same, you are not the same.  

 

Give yourself a minute to heal.   With your responsibilities you need to heal if you want to take care of others.  It's so darn hard.

 

I'm in the states too.  Where were you?  I was in Jefferson in PA and I had a wonderful dr and team.  There were two nurses I do not miss but the majority were wonderful.   I am sorry your experience was bad.  People sometimes lose their humanity.    However, many of us were let loose to live a "normal" life.    Whatever that means..

 

iola

 

[Winb143]

When I first went visiting I was" thingyme bob and whatshername said".  My short term memory was shot,  it comes back slow but sure.

 

Was always proud of my memory.  Long term okay but what happened 10 minutes ago I just couldn't grasp.

 

So you can always ask me to keep a secret as I will forget within a minute xx

 

Good to be alive no matter what xxxx

 

Win xxxxxxxxxx