Frustrated & Depressed

[PJ-ND]

I am so frustrated. I had my NASAH Jan. 6th, was  in ICU for 8 days and then discharged on the 14th. I went back to,work part time on Jan. 18. It was way too soon. It has been a constant up and down, rocky recovery. You know, I only had a few minor deficits like headaches from hell, no short term memory, can't concentrate or focus, brain feels like it is foggy, busy and noisy meetings and rooms stress me out to the point I have to leave, need about 14 hours of sleep a day. Nothing major if you ask my doctors. It is 4 months. When I pushed to get to full time in April it killed me.. all of my symptoms are getting worse, my fani'y has noticed I have regressed a lot the past 2 weeks. Everything is back except the severe  headache. Now my headache can be handled with prescription strength naproxen instead of pain pills. 

 

When i I was discharged my doctor gave me ONE WEEK to work part time and then the second week he wrote "8 hours, as tolerated." I have been fighting the doctor since to give me time to heal. My employer lat me build back up through the rest of January until almost the end of March to get back to full time. Now that I am back to full time I am not accomplishing anything at work for the last 3 weeks. I was putting out a lot more work with part time because I just am not handling the time, the stress the pressure right now.

 

Has anyone else had this problem? I am so beside myself I don't know what to do. I am overeating and gaining weight, I want to start self medicating with booze, (I have abused alcohol in the past but haven't drank for 13 years.) and for,the first time ever in my life I,had a moment of thinking maybe I should just check out of life because this is too damn hard. 

 

I feel like I have PTSD, I dream about my awful time in the ICU, I obsess about why my doctor gave me one week to recover and that  no one cares that this is so bizarre and unreasonable! Some days I just can't let it go because I just can't understand any of it.

 

i have not seen in this group where anyone else has not been given a reasonable amount of time from doctors to heal. I have reached out to patient advocates who promise they will help me and then I never hear from them again or they try to pass me back to my GP. Why wou,d my general doctor fill out work papers for me instead of the neuroscience people? 

 

Has anyone been able to get referred to a psychologist or psychiatrist? I really think I need help because my emotional health is crashing under the weight of all the stress and frustration. I feel so helpless and hopeless. I don't get how I am going to get better, I am going backwards. Now my work is starting to lose patience with me because I am 4 months out and not back to normal. But really, who can blame them when my doctor gave me a week of part time work and then back to full time?

 

For the love love of God! I am not experiencing anything out of the normal from what I see in this group! What is wrong with a Dr not knowing what recovery from aSAH is like? My family is starting to really worry and they are trying to work with a patient advocate to get me help. All I want is a reasonable time frame to keep,working 30-35 hours a week. I was handling that OK. It isn't that I want to not ever work again. I want a chance to heal and maybe actually get back to close to who I was before the SAH. This full time is killing me! 

 

Oh yeah, the insane insomnia is back the last 4-5 nights. Which is about to drive me over the edge. Ugh! It is all so overwhelming again. 

[ClareM]

Hi

 

As I said to you in a reply to a previous post you really need to stop and take stock  of what is happening to you. 

 

At 4 months I was just starting my phased return that took another 4 months and ended with me fixing at a reduced rate of hours. I had been working 5-6 days a week approx 41 hours. 

I reduced to 34 hours and now only work 4 days with Weds off to rest. My bleed was 2 years ago and I still need that day. I never intend to go back to full time work. If I have to work a weekend as per my contract I have a day off in lieu instead of pay. My health is worth more than the money. 

 

I think you you need to sit down with your employer and discuss what you are feeling and approach the subject of reducing hours. 

My neuro- psychologist was really helpful with compiling a report making suggestions for my working life. Can you see if you are able to see one through your own doctor? 

This could be used with your employer to maybe help draw up a plan. 

As you say your emotional health is starting to suffer so you really need to address the work issue now. 

Good luck, keep us posted and don't forget you are not alone. 

 

Clare xx

[paul99]

hi pj

 

Don't start self medicating, Your body wont accept it.  With the trauma your brain has undergone stop take time out.  Booze is not the brains friend.  It takes three months or more for the blood to dissipate from your spine,  every one wants too race back to full health straight away.  It doesn't happen like that, it takes time.  Everyone who has a bleed has a different rate of recovery  you are not exempt

 

if your body needs sleep then let it sleep.  Don't fight it.  The sooner you accept that things are happening at a slower pace then let it.  It is possible your doctor does not understand sah's and its legacy.  As Clare said see a neuro psychologist or a clinical psychologist to help you through the bad patch you are going through.  In the early days of recovery there are more bad days than good.  

Talk to your boss ask him to look on here, it will give him an insight as to what you are going through because its ignorance that they are not more forgiving and understanding  

I would also suggest that you speak to the gp about the drug you are using for headaches as its also used for other symptoms.  Use conventional pain killers.  I think the drug you are using may be responsible for the nightmares 

 

There is no shame in seeking help from those who understand your situation i.e. the neuro psychologist or clinical psychologist as soon as you can

 

And DONT YOU DARE THINK ABOUT CHECKING OUT OF THIS WORLD.  Your family needs and wants you in their life.  They want you back, and as soon as you feel able  see the drs and get help.  We are here, your life and family are more important, so is your happiness. Slow down, take a deep breath and seek help and if its necessary change jobs.  Drink plenty of water, slow down.  You have a second chance of life, grab it and enjoy with help 

 

Regards and I hope you take things on board.  Wishing you well.  We are always here for you

[Daffodil]

PJ. It is so hard and we all know and feel your pain.

 

i can't in all honesty understand how someone could think you could jump straight back into work so soon ...12 days after is beyond my comprehension but I note that in the US right now there is a big movement to educate people about the effects of concussion etc so it's probably lack of understanding about what a brain injury actually is so maybe it's a case of just stopping and saying to everyone 'let's get back to the drawing board'.

 

You haven't drawn breath since it happened and you need to work out what is possible for you and realistic, what your limits are for now and to pace yourself with the things you do need to do each day.

 

Some of that starts with you knowing and establishing that and sharing out loud that you need help to get a more realistic pattern of work and living. Maybe people see you coping and think you're doing ok but now they are noticing it's taking effect it's the time to take postive action to change things for the better.

 

what is your company like? Are people going to be supportive if you ask to sit down with them and discuss a more phased return, is there oth help you can ask for.

 

your doctors, go back and speak to them, ask them about support groups, what help is available and explain how hard it is and the issues you are having.

 

often people don't get the help post bleed and discharge without pushing or asking, that's sad but true. I had amazing support but even then but in every instance after discharge it was left to us to research it ourselves or battle to get access to to help I needed so I would say turn your energy and frustration at what might help you open a door here. 

 

Its ok ok to be angry, and scared and you need to talk that through and process some of that. life changed for you back in January, there's no going back but go forward and start giving yourself the kindness and help you need to recover.

 

i wish you well. 

 

 

[Macca]

Hi PJ,

 

I can understand how you are feeling.  I went back to work after six months and that was way too soon for me.  I supposedly went back on a phased return but after a week they were dumping all sorts onto me and it was too much.  It's hard to believe you went back to work after twelve days.  That's way too soon and quite dangerous if you ask me!

 

What we are talking about here is a brain injury, that in a lot of cases can be fatal, even before you get to hospital.  Your brain is at the core of everything you do, so to treat it with scant regard for your general wellbeing is ill advised.  If you were to take ill again, because you had gone back to work too soon, they may have lost your services for good, so why are they pushing you - or are you pushing yourself too hard because it's where you want to be? 

 

Treat your brain with the care and respect it deserves.

 

The things you describe (headaches, frustration, concentration issues, noise, stress, short term memory, lots of sleep etc) are all classic SAH features.  They take time to get over and your body will get over most of these problems - if you give it a chance, in its own time.  You aren't doing that at the moment.  You are overloading your brain, and your body is telling you it can't cope at the pace you are asking it to.  So slow down.

 

GPs are not specialists.  Go back to the people that treated you to get some proper advice from them.  They will more than likely tell you to take some time out by going off work sick or by taking some leave to go on vacation.  Discuss that with your employer too - but after you have obtained the advice from your treatment centre.  Then you can go to your employer armed with the knowledge they give you. 

 

You think you have PTSD - well I'm not a doctor and you might be right, but from what you say, my bet is that you just simply haven't given yourself enough time to let your brain heal properly.  You need a time-out and if you must carry on working in the short term, you should negotiate either lessening the load, or going part time - for a while at least.

 

You say you want a chance to heal, so deep down, I guess you know yourself what needs to be done to give yourself that chance - so be brave and do something about it.  Go and make contact with the people that treated you for their advice, and then go and sit down with your employer, be open and honest with them like you have been with us.  You will probably find them to be more receptive to that approach, rather than with the appearance that you are just not coping and are not saying anything to them.

 

Make that first move, it might just be the best thing you ever do for yourself.

 

Plenty of us have gone back to work, but even then most have had to make some kinds of adjustment.  A substantial change has happened, abruptly, to you.  Now it's how you deal with it that counts.  Be fair to yourself, take stock and re-appraise where you are, and what you want out of life, and then go and make it happen.  Work to live, not live to work.

 

Try and stay positive, but try and tackle the issues head on.  I'm sure you will get through it, but you need time and patience, and to be open and honest with those around you.

 

Good luck ,

 

Macca

 

[Chris G]

I wish I knew what to say to you to give you patience and care.  It takes time to heal and it is not an easy process.  Others can't see the struggles or pain, so it sometimes feels like a personal burden.  The people on this site do understand and the advice they give is invaluable.  I sincerely hope and pray that you are able to get through this with patience and that those around you give you the support you need.

 

Please know that it gets better with time.

 

Chris

[PJ-ND]

Thank you for all the kind words,! I finally got a call from the neurology department where I was in ICU for the SAH. Thanks to my husband getting involed with the patient advocate. They are sending paperwork to my employer to let me work as tolerated for the next 4 weeks. Then I have a followup in 4 weeks to reevaluate me. I am beyond thankful. I feel like I have hope again.

 

they are also setting me up with a neuropsychologist in my home town. It was kind of funny because they were kind of dancing around why I should see one until I interrupted her and said I was trying to get a referral to one from my primary care doctor. I know I need to see one because I am not dealing with any of this in a healthy way and I need help! 

 

Between the encouragement and understanding here on this page and finally getting help with not having to work full time and an appointment with the neuropsychologist, I feel so much better about my immediate future. 

 

I will  check back in here as I journey down this unknown path that is my future. I am so glad I have family that is working hard to get me the help I need. They were quite worried over my decline over the past 3 weeks. 

 

This group and the stories here make me feel so much better. I am not so different than all the great folks here. It is so comforting to know my recovery is like a lot of others and I am not all alone!

[ClareM]

Hi

 

So glad to hear that things seem to be moving in the right direction for you at last. 

 

Hopefully the reduced hours and neuro-psychology appointment will help you. It sounds like you have a supportive family too which is key in your recovery. 

Take this time to re-evaluate and consider what is most important to you.

Things do improve with time but time is the key - you need it  to discover the new normal. 

So glad you are feeling more positive be really interested to hear how you get on. 

Please come back and keep us updated. Glad BTG has helped too. 

 

Clare xx

[Daffodil]

Im just going to add this link too which may help https://craighospital.org/blog/tips-to-be-assertive-not-aggressive?utm_content=bufferc12f8&utm_medium=social&utm_source=facebook.com&utm_campaign=buffer

which is tips to being a successful self advocate. 

 

Its always  hard to speak up and ask for help but I think it's one of the best habits you can learn post brain trauma especially if it's not something that sits well with you. Practise and be assertive about what you need. A happier you will be a healthier you and as Win says ' no stress' and we all listen to Win. 

 

Fabulous that you are finding the steps you need to get your recovery on a good path. We wish you luck ! 

[Winb143]

PJ/Clare,

 

Glad you are getting help, as it is better than having me type a happy song out for you  !! Off key xx

 

We are not alone in this, we all have a good day and then the bad day comes, we are here for those bad days xx

 

I have come on here and felt so sad but upon leaving here I think to myself "You shyster Win" and even now I am smiling.

 

Now get sorted and please let us know how things go, and remember to keep happy 1 month of not hearing others problems is a must !!

 

No Stress if possible and I totally concur with Daffs comment lol xxxx  (They never listen ) lol

 

Keep away from people with problems ie doom and gloomers you need happy in your life xxxx

 

Good luck on your recovery

Win xxxxxxx

 

[Xmartz]

You may want to sit down and look at your finances/budget and see if there may be a way for you to cut back to working part time. 

 

I don't know if you're from the U S but I was put on social security disability to help supplement our income.

 

l can't for the life of me understand why your Neuro docs would think you could go back to your normal routine so fast! 

 

As said above, CHECKING OUT IS NOT AN OPTION! We have all been given a second chance and there is a reason for us to be here or the Lord wouldn't have helped us thus far. Your family and friends need you!

 

You can always find someone to talk to. I don't know if we can send private messages on this forum but I'd be glad to be here for you any time you need an ear! 

 

Hang in there and don't give up on those patient advocates. Let your family help. They need to know that you are still in the early stages of recovery as well and that you need help.

Hugs?And prayers ?

Mandie