Stephanie Rubeck Posted January 14, 2013 Share Posted January 14, 2013 I'm coming up on the 1 year anniversary, if you want to call it that, of the day I had my subarachnoid hemorrhage with complications. I'm still not back to 'normal' and probably never will be. My family relives it like it was yesterday in stories they tell me. I think them talking about it helps them, but some days, I just don't want to hear any more. I can't tell my 14 year old son to stop talking because I want to vomit hearing about it all over again though, he needs to get his feelings out. I can't tell people close to me how much I'm terrified of the memories I do have, much less the ones I don't have. I know I was in the coma for 2 weeks and the doctors said I was going to die. My family has told me many MANY times all about it. I'm starting to have nightmares again the closer it gets to the 1 year mark. I cry a lot lately, but I just tell them it's because I have one of my headaches if they notice. I just wish I could go back to being a normal every day person. Not a person with a piece of metal screwed to my brain and a tube running down the inside of my body to drain the blood from my head forever. I can't even wear a freaking hat because of it. (yes I'm bitter), glad to be alive, grateful, but bitter about the things I have lost. I dunno, I just needed to vent a bit...thanks for taking the time to read. Stephanie Quote Link to comment Share on other sites More sharing options...
winter Posted January 14, 2013 Share Posted January 14, 2013 Aw, Stephanie... Sending you big hugs hon. It is an emotional time for you and your family. I can understand about not wanting to hear about it all the time. I know we're all thankful to be alive, but the bitterness of what's happened does set in for many of us - and that's normal too. You did go through a traumatic, to say the least, event in your life. And if you don't want to hear about it from your family members, maybe you can let them know how you feel, how upsetting it is for you to hear about it all the time. While they may need to talk about it, maybe they can share their feelings with someone other than you. When you're ready to talk about it you will. Karen posted in the hemorrhage discussion forum, a writing from a psychologist, I believe. Talked about stages of loss and grief and what we go through. It made so much sense to me. All of your feelings are valid. Sending big hugs your way. Keep coming into BTG to talk about what you want to talk about. That's what we're all here for. xxxooo, Carolyn Quote Link to comment Share on other sites More sharing options...
winter Posted January 14, 2013 Share Posted January 14, 2013 (edited) The article is by Marie Allen, entitled, "What's Happened To Us" - http://www.behindthegray.net/vbulletin/showthread.php?7946-What-Happens-To-Us-By-Marie-Allen-(Psychotherapist) Edited January 16, 2013 by Karen link added. Quote Link to comment Share on other sites More sharing options...
MaryB Posted January 14, 2013 Share Posted January 14, 2013 Stephanie, Maybe in a gentle way you can interrupted or redirect their re telling of the story? You have been through a lot and it is not easy to get passed the anger and bitter stage. I certainly did not do mine in any the correct order of grieving. I jumped from numbness to acceptance and now I live in a bit of anger. The one year mark is such an interesting mark in your life. It made me move on a little bit. I think. I don’t know it was such a big thing in my head and I know we are all so grateful & everything but I felt like maybe I needed counseling after all! Also it seemed I would be so much better than I was but when I look back at how far every month I have come it is interesting that you miss so much of your progress. I almost think it what we need is a balancing coach but maybe that is what BTG is for us. I think some more feeling normal days would help. It took a year to cook, 15 months to knit etc… but I went back to work at 5-6 months. Maybe it is time to take some time out of your day for yourself. Water aerobics class or something with some safe exercise makes me feel much better. I feel as if I can breathe. It is a great weigh less feeling in the water- weight less of mind and body. But you somehow have pull through. I hate the bitter stage and know I personally need to work through that and am not sure if it is a phase of being tired or just a stage anymore. I think Step you should write more and get those feelings out. Go ahead and vent in BTG so you can work though it. I often write in words and than just delete the whole thing so no one feels bad if they read it. I imagine with a family you have no privacy. It must be so hard for all of you with families at home I cannot imagine having all that commotion all the time in the house. It would be like work. Do you have any friends or relatives that are normal and do not have a bunch of drama in their life that you can have an equal conversation with. Not all about you but that they get what you have been through? And you can have an interest in what goes on in their life as well? I made a New Years Resolution to spend time every 2 weeks with my friend and her small children. And it is helping me. I would always rather stay in my pjs on my day off but after I am out and about with them for an hour or so I feel better for it. Good Luck sweetie! Maryb. Quote Link to comment Share on other sites More sharing options...
Louise Posted January 14, 2013 Share Posted January 14, 2013 That’s what its all about hun. Why not tell them how you feel about it Stephanie, I thinktalking it through is good for all of you, maybe though you should use the 1stAni of it as a point where you say I know you all mean well & I know howbad things were but lets move on now. Honey you really should maybe consider councelling it reallyhelps I think maybe thats the road to go down. I have the shunt and tube running down the inside of my bodytoo draining the ugh away aw! Bitter is ok but don’t let it fester like I diduse the 1st Ani as the turning point. Talk to family be honest with them ok you don’t want to hurtor upset them – but they’re doing just that to you ok they don’t know it, butif you don’t tell them they wont know and carry one.. Reaching the first one is sometimes the worst it gets a tadeasier as the others go.... ok better stop there because this so reminds me of myself I find i may be too pushy & you really dont want that but please talk to your family tell them how you really feel. take care Quote Link to comment Share on other sites More sharing options...
Guest Mike Posted January 14, 2013 Share Posted January 14, 2013 (edited) Hi hun as people will its normal to feel this way, last year and this year have been just like yours, I started a thread called Psychotherapy vs Psychiatrist it may help you as it has done for me, I am still reeling even now 3+yrs further down the road, recovery is a very long road at times, and sometimes we have to travel the road more than once to get the feel of it,having pulled out my hair on numerous occasoins my friends on here have been so helpful kind and respectful, and most of all the advise given is only now just begining to sink in to my mind, please remember its a hard injury to cope with emotionaly and and pysically too, the things we took for granted are harder to come to us, but if I may say so albeit late in the day life is great at what ever level you have it, we are here for each other because we all understand the fullness of what has happened to us? imho, take a deep breathe close your eyes and think " I am alive I am here I can manage this journey because I have friends and much more to support and underatand that not every day is going to be perfect but its still aday day to learn something new, we are a band of brothers called "behind the grey all for one and one for all" wishing you well for 2013 Mike XX Edited January 14, 2013 by mikeymack2002 Quote Link to comment Share on other sites More sharing options...
Winb143 Posted January 14, 2013 Share Posted January 14, 2013 They care for you Steph, they want to know you are well. They have been through it also so in a gentle way just say" lets have a week of no SAH chat. deal ? " My daughter told me she thought I'd die as I got rid of one lot of germs I then came down with another germs, they love you and are scared for you also. xx It done my daughter good to give vent to her feelings. Be Well and happy All of you xx Love to you and Family xx WinB143 xx xx Quote Link to comment Share on other sites More sharing options...
Daffodil Posted January 14, 2013 Share Posted January 14, 2013 Everybody in the BTG house with a VP shunt shout yeah! Sorry , poor humour, I noticed with interest on this thread that Steph, Louise, Mikey, Win and I All have shunts. We have the majority view! , tee hee Sorry ill get on subject Steph. Just to say I am thinking of you and get that you want to move on at the 12 month mark, im sure it will come for all of you but maybe at different pace. I think asking your family to reduce or limit the times they mention it and why you need them to would be good way to start. Interestingly I have the opposite problem in my house where no one wants to talk about it, which suits me fine , until I'm feeling rough and they've all moved on and are looking at me as if to say,"what's up with you?" and I'm like "hello, SAH" Hey maybe we sould do an SAH wife swap special! Quote Link to comment Share on other sites More sharing options...
JayKay Posted January 14, 2013 Share Posted January 14, 2013 Interestingly I have the opposite problem in my house where no one wants to talk about it, which suits me fine , until I'm feeling rough and they've all moved on and are looking at me as if to say,"what's up with you?" and I'm like "hello, SAH" Hey maybe we sould do an SAH wife swap special! I'm the same as Daffodil. No one spoke about it to me, really. I kept asking what happened this time, and what did I do then? etc. I do think, though, that WRITING about it really helped. It was suggested to me by more than one doctor/nurse, and as I had a blog, I used that. It has been very therapeutic. As soon as I came round in the hospital I was all "I don't want this to define who I am" and it hasn't BUT it is still a huge part of who I am now, so I have come to accept that and wear my scar with pride - not that anyone can see it really, but I can! Be gentle on yourself. We have survived a life changing event and it takes such a long time to get over it. We have to learn to pace ourselves and I can't tell you how hard that is! We are so used to living such hectic lives, but our body is telling us to slow down. I've just (nearly 3 yrs post op) started Tai Chi and I'm loving it. It teaches us to breathe, to slow down and yet helps to strengthen the body (and mind). This place is the best, and I'm so glad you have found us. Keep coming here. Ask any questions you might have. Sorry, that's all for the moment but I hope you will find solace here. Quote Link to comment Share on other sites More sharing options...
Daffodil Posted January 14, 2013 Share Posted January 14, 2013 Jen, you're right about the writing. I haven't explored my SAH experience too much so far in writing but have shared my feelings since I had my shunt put in, it's been a good way of letting people know some of what I'm really feeling. If anyone wants a read it's here. http://popgoestifty.blogspot.co.uk/?m=1 Quote Link to comment Share on other sites More sharing options...
DawnS Posted January 15, 2013 Share Posted January 15, 2013 It's really difficult to stop people talking about it. When I got home from hospital, every time we bumped into someone we hadn't seen since sah, we had to go through the whole story again. Can you ask people to tell you how far they think you have come and what good progress you have made? I wonder if this would be a gentle way to get them to realise that you are finding it all a bit negative and to turn it around? I didn't have a shunt so recovery is probably very different for me, but the bitter feelings did subside with time. I think the first anniversary is probably the worst, I hope...it's the only one I've had! Good luck with your first anniversary and here's hoping that getting it out of the way helps you to feel much better. Dawn x Quote Link to comment Share on other sites More sharing options...
kpaggett Posted January 16, 2013 Share Posted January 16, 2013 The one year mark is so hard. You look back and the recovery is going...but you NEVER EVER thought it would take this long!!!! There's where the bitterness comes in. AND all the deficits that consume your day, but no one else even remotely knows. Then they all talk about what they want to 'Remember', but it isn't necessarily what you want to remember. But what you want to remember, is exactly what they could care less about. I will say that the anniversary was hard on me. I cried all the time too which has always been one of my issues - emotional expression disturbances. Now, just a few months later, I took another step towards healing. I think I just needed to get through the expectations and accept where I was in the present. This acceptance is such a process and it sometimes dashes hope, but balancing the two is good...like yin and yang. On another note, I did go to a neuropsychologist...finally...and it really irritated me that my discharge papers recommended OT, PT, Speech, and Testing, but made no mention of counseling. I needed that just as bad as all the other therapies. I was even discharged with a secondary diagnosis of anxiety and they still didn't recommend it! So, even doctors put just as big a stigma on psychological concerns as everyone else does. This maddens me. I felt like I was going to die when it happened...how could I NOT need counseling? It took me so long to realize and then actually make the appointment. You're asking a brain injured person to make a bunch of decisions. Isn't that what recommendations are for anyway? Anyway, I really hope you get some renewed energy after the 1year is over! ~Kris Quote Link to comment Share on other sites More sharing options...
Wem Posted January 16, 2013 Share Posted January 16, 2013 Hi, My 1 year anniversary is coming up in a couple of weeks too! Like Steph I have a lot of conflicting emotions about this momentous date. Firstly I am of course really pleased to have made the 1 year mark, but I cannot escape the fact that I did not think for 1 minute that I would still be struggling to recover at this stage. I distinctly remember being told in the early weeks that my sick pay from my employer would cease at 6 months and I felt a sense of relief that I would be covered! After all I would surely have made a full recovery and be back in paid employment at this stage. How wrong could I have been? My family and friends fluctuate between talking about it too much (my mother mainly, bless her) to well meaning indifference! For me, there is also an element of my wanting to stop talking about this subject 'cos I am really struggling to find anything positive to say on a day to day basis. One thing has struck me with all this talk about strokes is that one member of my wider circle of friends had a stroke a few months after my SAH. He was left paralysed down one side of his body and unable to speak, absolutely traumatic for him and his family. What I have found though is that his quality of life is returning to something nearer normal much faster than mine. He is talking well again, able to get out and about with some assistance. He does not have any problems with fatigue, headaches, noise or light issues. So he has been able to socialise with the crowd on a regular basis almost from day one and I get the feeling that because my 'injuries' are not visible no-one is interested anymore. Seems I sound a little bitter and I do not mean to but the final straw was when one of these so-called friends was telling me how dreadful it was for the stroke victim as he will not be able to return to his role as finance director again, there was no real understanding that I am unlikely to be able to return to the senior project manager role I held neither. Oh well, sorry for the negativity guess it is my emotions getting the better of me as the anniversary approaches. Tomorrow is another day, Wem Quote Link to comment Share on other sites More sharing options...
Stephanie Rubeck Posted January 20, 2013 Author Share Posted January 20, 2013 Hey maybe we sould do an SAH wife swap special! I say LET'S DO IT!!! I'm on board for a swap Thanks everyone for your replies. Sorry I didn't get to read them sooner, I've been trying to do the 'normal' life thing. Quote Link to comment Share on other sites More sharing options...
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