Struggling to Hang On

[PJ-ND]

9 months out from a NASAH. The last 2 months have been a downward spiral. Anxiety like I have never had in my life up until now. PTSD like mad when I am coming up to a followup MRI or even just a followup medical appointment. Heck, I had a full on panic attack just driving by the facility I was flown to and spent 10 days in. 

 

I am out of all leave at work. Now days I can't work full time are without pay. I didn't even take 2 weeks off of work when it happened! Went back to work on pain mess 24/7 for the headaches just so I could go back. I hardly remember that time in my life. If I could go back I would take 3 months without pay in the early days. Now everyone at work thinks I should be normal. 

 

I am so not back  to normal. The headaches are horrible again. But my employer thinks because my MRI doesn't show blood or fluid or whatever, I should be back to normal and be able to,work full time again. Yet I haven't been able to put in one full week of work since my SAH. Seems like my doctor thinks the same because he is the a-hole that gave me less than a week after my discharge to,go back to work.

 

i FINALLY have an appointment with a neuro-psychologist November 6th. (Thanks to advice from this group!) I am sure I can hang on until then. But I am sure I am hoping for way too much out of that appointment. God I pray he can help me deal with this anxiety and PTSD!

 

i have had such a rough couple of weeks I seriously wish I could just go to sleep and not wake up. This is so damn hard with no help from the medical community. It took until July, 6 months out, to get an appointment with a different neuropsychologist to get some testing and diagnosis in the first place. Now my work seems unwilling to accept his recommendation to work 4 hours a day and work up to 6 hours a day over the next 4 months. Instead I kill myself trying to work full time, which I can't, and then I end up off work for 2 to 3 straight days. 

 

I want to quit working, quit making my house payment (because this house is huge and is staring to look like a hoarders house (I have a disabled veteran for a husband, a vision impaired son, a father with dementia that I see about twice a month since January because that is all I can handle, a drug addicted brother and sister-in-law that we constantly pay their rent so they don't end up on the street) let it go into foreclosure,) live God knows where, just to be able.to,curl.up,in a ball and be able,to rest and recover.

 

Seriously, what do,you do when you are buried in debt, have no options for,help from doctors that are willing to help you? I uss to,take care of all those people in my life! Now I can't seem to take care of myself. I just can't get back to full time but I lose my health insurance if I quit or get fired. 

 

How do you adjust after a SAH? I look normal, everyday I get remarks eluding to the fact that I should be back to normal from coworkers, friends, relatives. I wish I could make them all read posts from this group! 

 

Yes, I am still here. But why do I keep feeling like it is way too hard to still be trying to have the life I had before? Obviously I am not accepting that I am not who I was before. When you were a Type A, driven, upbeat, social butterfly, and now you want to hide away from the world and just sleep, rest, recover, and get better, what the heck do you do? 

 

Ugh! My head hurts, I want to throw up, I want to drink, a lot, to numb the pain. But I don't. Someone please tell me it gets better. I want to be who I used to be! Does anyone ever make it back? 

[paul99]

Hi my darling

 

I'm sorry you feel this way  but getting the help you need is so important. Can you call the neuro nurse specialist at the hospital you were treated at and explain how you feel and ask her for help. You cant keep going on the way you are because as you say you are hitting a brick wall

 

Your employer needs to get more informed. Is there a HR. department  who can support you? When you see the psychologist on the  6th  explain how you feel and get him/her on side and you also need to get your husband some support from the VA.  They, I believe, are very good at helping vets get what they need in the way of support. Because you are part of that system as well and if your employer refuse's to accept the information then they can be forced to comply legally. Also think about telling your brother that the money tree has dried up because you and your family are the most important thing. More so yourself need help to get through the nightmare, you cannot carry people who are not going to support themselves. There is an old saying you made your bed you sleep in it

 

I understand how you feel but I'm a little sad because you didn't come on here earlier sweetheart because you are not alone. There are people who will listen and try to help you, that's what we are here for. Your health and well being  is more important, please don't resort to drinking, please drink plenty of water and see if that reduces the headaches because of all the other stuff  going on is draining you big time. Get some support and a kind ear to help you through this crisis. Please remember that we are here and we want you to recover as much as you can with support and love from us all

 

You won't be who you were, embrace the new you and accept that things will get better promise and things will hopefully solve themselves but you need to be honest with psychologist and us. 

Take care and massive hugs and cuddles from this side of the pond xxxx 

[Winb143]

Sorry you feel so down, not much I can say but my Daughter and next door neighbour have panic attacks and once they knew it was not going to kill them they seem to manage them okay.

 

They suck on peppermints and drink water for the dry mouth and tell themselves to relax.  As for getting better we all improve slowly but it is a long process so start being kind to yourself.

 

Wishing you all the luck and well wishes you can get xx

 

I was told I'd never walk again but a few yards on a bad day and on a good day 200 yards.  

 

As Paul has said get some help if possible.

 

Good luck and remember if down come and talk about it to us or anyone, as stress does us in !! Never bottle things up just find someone you can trust to talk to xx

 

All the Best xxx

 

[Macca]

Hi PJ-ND,

 

Sounds like you're having a tough time.  Looking in from outside, this is what I would do in your case.

 

1) As a one-off, get someone in ,perhaps a professional cleaner to clean up your house, as I suspect it will be too much for you to do alone.  Much easier to keep clean once it is done.

 

2) Get your neuro help as fast as you can and ask them to refer you to any help groups they know of.

 

3) Tell your brother it's time to stand on his own two feet and pay his own rent.  If you have to reduce your hours you can't keep susbsidising him.  Tell him and his other half they need to go out and get jobs and pay their own rent.  You've done more than enough by keeping them in clover for this long.  It's time for you to get a bit selfish and a bit tough for your own peace of mind. If, as you say, you are buried in debt, then you have even more reason to get tough with your brother who has been sponging off you for way too long.  As for your husband and son, problems or not, there must be some help they can give around the house, it is very rare that people are completely immobile or incapable of anything.  Tell them they have to make changes because of the changes that have happened to you and that doing nothing is not an option.

 

4) Get your neuro people to explain to your employer about the after effects of SAH in an effort to be more empathetic to your situation.

 

5) Talk to your employer your self, but only after you have decided you know what it is you want.  Then talk to your employer to try and re-arrange things a bit to benefit the both of you.

 

6) Quit drinking - go for a walk instead. Alcohol is a depressant and if you are on medication it will make things worse.  You need a clear head to sort out your troubles.  The answer to your problems do not lie in the bottom of a glass.  You will feel better about yourself without using alcohol (which is also very expensive and a drain on your finances).

 

7) Open up to people, you will be surprised at how many have solutions or opportunities for you, not necessarily to all things, but to some at least.  Bottling things up, and letting your imagination run away with itself, will make things appear to you ten times worse than they really are.

 

8 Be pro-active.  Take action and deal with some of your problems, don't just sit there and let things get steadily worse.  Life isn't about how many times you get knocked down, it's about how many times you get back up and take it on.

 

Good luck - stay in touch.

 

Macca

[PJ-ND]

Thank you everyone. It has been such a rough couple of months. I will hang on until my neuropsychologist appointment and I will be brutally honest with him.  I sincerely hope he will help me with my employer. 

 

It is weird because no one but my immediate family and a very dear friend at work wants to know how I am doing. Or what is realistic for where my recovery is at this far out. Thank the Lord for them!  

 

I am going to pursue some of the suggestions offered. I am pretty desperate for help.

 

Thankfully my husband realized on his own about 2-3 weeks ago I have been struggling with bad anxiety. If not for him, I think I would have walked into the ER thinking I was having a heart attack when it was actually anxiety. 

 

He he is good about sitting with me, helping be do deep breathing, turning some ocean sounds on the Echo, rubbing my shoulders or feet, and bringing me back down. He does really try to help in any way he can. And he tries to make me slow down, I just don't listen much.  I am so,used to being the one that keeps everything running and everything on track. Hard to let someone else step up. 

 

 My 3 adult children, and one of the sons girlfriend, and my husband are the reason I hang on. That is one good thing that came out of this, we are all so much closer than ever before.   We all seem to have more patience and be more understanding with each other now. And we are constantly checking in with each other to make sure things are ok. See, I found a positive!! 

 

I do have support but still get so overwhelmed by not being able to do what I used to.  I swear I am going through the steps of grieving over losing my old self and my old world.

 

i will admit it helps to talk to people that actually know because they have been through it too! 

 

Thank you you so much for the kind words and good advice.  I will keep coming back here. It helps a lot. Now it is time for American football, one of,our favorite pastimes as a family. They all still pile into my living room to,watch the games, in spite of the mess and the fact that I go,to bed at halftime now. ❤️

[iola]

Holy smoke, you need to take a breath.  No wonder your anxiety level is so high.  I had the same as you and the first year is the worst.   I am going  on 4.5 yrs and my anxiety is down but I still have headaches  and when I get that wierd dizzy off balance light headedness I silently freak out a bit.  

 

I work fulltime time too and it's hard.  I went back four months after mine and was part time and suffered enormously.   My daughter was in second grade and I had to get her on the bus every day and could not walk a straight line if I tried.   Still can't.  

 

Your employer must be difficult and they no nothing of your injury.  Just because the blood is gone does not mean you are fine.  No one knows your brain like you do.  We all look okay from the outside but it takes a long time to feel good again.  It will happen and good days will come.

 

iola

 

 

 

[Macca]

You sound more upbeat today!  That's more like it, well done!!

 

Sometimes you have to step back and look at things in the cold light of day, grab life and try to bring it under control.  Don't let life control you.

 

It does get easier over time, unfortunately there is no quick fix.  Iola is right, no one can see an injury so they think there is nothing wrong.  That is not the case.  Like looking at a car and thinking it's ok until you lift the hood and there's no battery so it won't go!

 

You are still in the early stages of recovery, this is a brain injury don't forget, so you have to rearrange things in a way that means you can cope.  You might have to sit down with pen and paper first , then discuss things with your family and come to family decisions that enable you to recover properly and give you the best chance of making the recovery, that surely, they all want to see (as do you).

 

Good luck PJ, please let us know how you are getting along, we are always here to support you as best we can.

 

Macca

[PJ-ND]

From pj's husband ... 

 

I just want to thank everyone in here for being so supportive. I appreciate the mix of gentle love and true understanding of her situation along with tough love and solid ideas for dealing and coping with this! It gets difficult when I'm right there for her and giving her suggestions, support, advice, etc and four months later when a neuropsychologist says almost literally word for word the same thing she hears it, is encouraged by it, and tries to implement it FINALLY while acknowledging to me that if she could let me help her she would do so much better.

 

There ARE S-O-M-E overwhelming things in our home but I've been blessed by God to step up like never before in this situation! It just takes a village to get pj to look at any other perspective and I've lived through that with my own chronic health issues. I'm continuing to look for healthy ways to support her and learn to be what she actually needs and not only what she thinks or says she needs, so again I appreciate you all as an invaluable resource and lifeline!! God bless all of you who battle this struggle in yourselves or with loved ones! Thank you. ?❤️???

[Winb143]

We all need a special person in our life while getting over this and you have been chosen pj's hubby, just like my hubby was also  ha xx

 

But I also get help from Daughter and I knew when I was getting better as we started to argue again  ha ha (She has a fractured ankle at moment).

 

Wishing you both all the best and keep spirits high when possible xx 

 

Good luck both and keep happy xx

 

Win xx

[frmertd]

I will pray hard for you and your family tonight. Im sorry you are having such problems so far out. Terrible.

[Lesley]

Thank you for writing this. It's one of the most realistic descriptions I've read.

I had my grade 3 sah on 29th oct and everyone expects me normal and working now! I feel the same. I think the panic attacks are just your body letting you know something isn't right, and also letting you know that life is precious that's why all creatures fear death.

Thank you for your honesty xx

[Macca]

Hi Lesley,

 

You've come through the worst bit - well done!  Now you might want to open up a bit.  It's ok to discuss your thoughts and fears and we will help, if we know what the problems are as you see them, from your perspective.

 

All our journeys to recovery are different, but in many things there are similarities.  What is different is the degree of each problem, your own individual circumstances, your attitudes to solving problems, the help we receive from friends and colleagues. 

 

It takes a long time to recover and whilst you may be up on your feet, the mental journey can be a tough one, and physically it can be draining.

 

Keep talking to us and we will offer our support.

 

Good luck!

 

Macca