Sandi K

Mary I know what you mean about being type A and wanting to be type B. Slow down and focus on one thing at a time. I read an article yesterday that said if we have a report to write for work it can take all day and not be done well if we are doing multiple things at once. But if we focus and ignore disruption it takes half the time, uses less energy, and is done well. I'm trying to learn not to multitask, after years of being so proud of my ability to do that. The grocery shopping is a milestone, good for you! It sounds like your schedule change is working because grocery shopping and meal planning were not even possible for you with your old work schedule. I remember when I was finally able to post photos to Facebook again. It was a huge milestone! As if a small window in my brain was opening again. All of these little things help us to understand we are making progress. Sandi K. Xoxoxo

Cath, thats wonderful news! Sounds like you have a supportive boss. It's really great that they've proposed reduced hours and stretched it out to April. It must be a huge relief to you. I was the same with having no life when I went off work. Just work and rest and nothing else. I'm very glad to read that changes are being made that will support you in your return. I had rehab yesterday with my rehab/occupational therapist. We're making progress! We've gone from her having to prove to me that I'm exhausted and have limitations to now we are talking about what a return to work might look like in a few months and I'm learning how to set boundaries. The boundaries are about protecting myself from taking too much on. And I'm learning what kind of work environment will be best for me (quiet is better than noisy for example). It's all baby steps but I'm starting to feel positive about a return to work instead of dreading it. I'm still not ready but I'm feeling better about it. Sandi K. Xoxo

David, this is the place to complain and after your work day yesterday anyone would be exhausted!! No wonder you feel so old and were ready to quit, it's going to take days to recover from that. My psychologist often talks to me about the unrealistic expectations I have of myself. She explains how in an example such as the one you are writing about a healthy person would be ready to drop after a day of doing 3 people's jobs and all that activity. She asks me how I can logically expect myself to do that when I'm not healthy and I'm in recovery from a brain injury. All that work you did yesterday required your brain to be firing all neurons. How can your management expect that you will do the work of 3? It's impossible. Congratulations that you did it and yes a celebration should be had. But David, it's not realistic. Not in any situation for anyone. I hope I'm not overstepping the mark here, I'm just worried about you and I'm trying to say 'no wonder you feel awful!'. 40 hours will be much easier to achieve if the daily pace is kept to something realistic. Perhaps something could be mentioned in the meeting regarding the addition of hours? You are certainly doing your part and keeping your end of the deal. Surely your bosses can see that and realize you are a valuable employee. Your determination and work ethic must be recognized. Sandi K. Xoxo

Aw Dylan must be so frustrated! It must be very similar to when we are pushing through our recovery and working despite feeling like crawling back into bed. He'll want to fit in with everyone else and not stand out and be different. It's such a sensitive age. It must be heartbreaking for you Michelle. You are such a good mom and you must feel as upset as Dylan does. Sally is right, you are so good with words and Dylan is lucky to have a mom who understands how he feels. Going to school is going to be hard for him but with your constant love and support he will make it through. I can't think of a better person to be on his side helping him everyday. Sandi K. Xoxox

Congratulations Jess! Your words are hopeful and it's comforting to read that things get better. Thank you for sharing and supporting everyone here. Sandi K. Xoxo

Welcome to BTG Debs! My PM-NASAH was a year before yours. Nov 10th 2010. Recovery has been long for me but it's different for everyone. There is loads of info and support here. Sandi K. Xoxoox

Hi Julie Ann and welcome to BTG. Lots of support here. You've been on this journey of recovery all by yourself for a long time. I'm at almost 2 years after a non-aneurysm bleed. I am feeling better but have a long way to go. The only reason I feel better is because I'm not working right now which means I'm not as fatigued. When I'm buried in fatigue my neurological symptoms continue to worsen. I'm learning to pace myself and go slower at things. I overdid it yesterday and am now feeling it today so it's a leaning process! Sandi K. Xoxoox

Hi Neil! What else did the docs say? Will there be follow up appointments? Did they just send you on your way with a bleeding aneurysm? How do you feel? Sandi K.

Carl, it's really something that they've asked you back to your old job in light of all that's going on with you at work. You did that job for so many years you can probably do it blindfolded! Go easy on your first few days, it's been awhile and may feel a bit strange. Cath, oh Hun I've been there too. It's such a difficult place to be!! Your boss is trying to help. You want to be back to your old self or at least show that you are improving. Nobody wants to give up any of their income. I fought through this struggle for months and months. Do you get counseling? Being on BTG has helped me so much but I also see a psychologist who is really helping me to have a different perspective on work and income and my health and well being. It took me far too long to realize that my health is the priority and nothing else will fall into place unless I feel well. It was such an emotional struggle. I have always been career oriented and have worked since I was 15 years old. My wages have always continued to climb. To finally say 'I need time off to recover' was like admitting defeat. To give up my job and the wages I worked so hard to earn was like giving away the biggest part of me. Who am I if I'm not the manager of my dept? It's a huge undertaking for me to redefine myself. I'm not saying you will feel the same, just sharing my experience. What I am saying is your health is the priority and if you are being given an opportunity to spend more time getting better and getting to know yourself after SAH then it's worth considering. Exploring options and learning about yourself can be an adventure. Sandi K. Xoxoox

Oh that question of why... Yes I still zone in on that almost 2 years after. Not knowing why is frustrating and I know what you mean about wondering how they know it won't happen again. Statistically, it won't happen again. I've searched all over the Internet and still do occasionally, searching for reasons why. I've read my medical reports and looked at online medical dictionaries to figure out what it all means. There really isn't enough research on SAH. I know I have twisted veins going up my neck to my brain. This is not common but not life threatening. I wonder if my twisted veins caused the bleed. I found some info on copper deficiency through childhood causing malformed or weak blood vessels. At times growing up we didn't have food in the house. Was it copper deficiency. I've read that women who enter peri-menopause early have a stronger tendency to have an SAH. This could be me. High blood pressure and stress. I was in a stressful meeting and I'm sure my blood pressure was through the roof at the time. I was also taking loads of ibuprofen for headaches, sometimes 6 a day along with Cold FX to keep colds at bay. I wonder if the combination of the two caused it or if too many ibuprofen caused it. Or was it truly just like being struck by lightening? I don't think so. Something caused it and not enough research has been done to be able to pinpoint why. Sandi K. Xoxoxo

Wow, that's some text!! For how much I hate comments like that i find it easier when they are face to face. At least then you get to see the body language and hear the words in context. You can understand then when it is truly just ignorance and you have an opportunity to ignore, throw it back, or educate depending on your mood and energy levels. With the text you only see the words and honestly I think I'd be furious too!! It's so unsupportive and inconsiderate. You almost died! When I went back to work the first time I educated everyone at every opportunity about the statistics and how 'special' I am to be alive. Sandi K. Xoxoox

Hi and welcome to BTG! It's good to find a place where there are others experiencing the same thing. Without BTG I would be as Mary says, thinking I 'should' be fine and wondering why I'm not! I have right eye damage too but I'm getting used to it and I don't notice it all the time now. It used to feel like it had something in it and I rubbed it constantly to clear it! My bleed was in November 2010. Sandi K.

Hi Shellie, being emotional and crying seems to be part of the healing process. Most of us go through that phase and it can come and go. It hit me at about the 3 or 4 month mark and I cried at everything. It does fade but I find that since my NASAH I'm much easier to tear up over things like weddings and such. I returned to work on a gradual phase in at the 6 or 8 week point and although the neuro's said I was fine I definitely was not. Instead of following my own hunches I focused on what the experts said. I made myself exhausted and the neurological symptoms kept getting worse. Things like dizziness, headaches, dropping stuff, uncoordination, blurry vision, and so on. I even fell down from a standing still position! This doesn't happen to everyone, some NASAH's heal quickly and do return to work just fine. I just want you to be aware of what to watch for. I suggest you read 'letter from your brain' and follow your own pace. If you aren't feeling well then slow down. You know how you feel. Sandi K. Xoxoxo

I read about this somewhere when I was searching for information about causes of brain bleeds. My hair stylist does what Sami's does, puts a towel in the part where my neck bends back. Shortly before my SAH the salon bought new sinks that are more comfortable, meant for elderly ladies who have limited flexibility. Those sinks are far more comfortable than the old kind. The sinks are higher and you don't have to bend so far back. My chiropractor told me I should never ever allow any chiro to adjust my neck too. Back ok but not neck, only very gentle movements. Sandi K.

David, it's hard not to be cynical of the pros when they tell us we will or should be fine but we aren't! They lose credibility don't they. I used to have burning in the early days but haven't had for sometime. The blood pressure numbers are concerning. Was a there a reason for it like being stressed at work or bad traffic or something like that? You are at work today and I'm guessing you don't want to take time off to see the doctor today. Sandi K. Xoxoxo

Hi Panamacane, welcome to BTG. It must be frustrating to watch what is happening with your dad. When I had my SAH I'm certain it was harder for my husband then me. He felt panic and so helpless standing on the sidelines unable to do anything. I was drugged up on codein and morphine and in a haze of pain and nausea. It's harder on the loved ones than those going through it. All you can do is be there for your dad. Be by his side and help him to be comfortable. Cool cloths on his head if he's hot and hold his hand. Tell him you love him. All of that helps, even if he's unconscious. Hugs to you Sandi K. Xoxox

Hi Ron, happy Anni-versary. This next year is going to be much better than last. best of health to you. Sandi K. Xoxox

Hi Kris, happy belated Anni-versary. I hope this next year brings health and wellness to you. Sandi K. Xoxoox

Hi Gaynor, welcome to BTG! I had a non-anny too, almost 2 years ago. Recovery is different for everyone but it doesn't seem to matter if you have a bleed from an aneurysm or no known cause, a bleed is a bleed and recovery can take awhile. The positive thing about NASAH is that statistically its not likely to happen again. I've always struggled with that concept, wondering how can they be so sure when they don't know what caused it? But all studies show that to be the case. It must have been awful between the time you had your hemorrhage and when it was actually diagnosed. I returned to work too early twice and am now off giving my brain the time it needs to recover. I think I prolonged my recovery by pushing myself too hard too soon. Healing the brain is a very slow process. Drink lots of water and allow yourself to rest. Sandi K.

Dawn, that's great news! What a relief for you. The pressure is off, you've got a more gradual phase in, and you get full pay. Sarah, very interesting post about your sleep requirements. I remember when you used to post that you had slept all day and were afraid that this was it for life now. You are right that it's encouraging for us to see that after 3.5 years you don't need to do that anymore. It's different for everyone but its hopeful to see others make milestones in their recovery. SarahLou, I wonder if it will always take us longer to recover from surgeries because our brains need so much of our energy post-SAH. I'm always concerned about catching even a cold! Anything small can knock us down so something major like surgery could have a big impact. Hopefully you will see a quick recovery. David, I'm waiting for a decision from the insurance company once they've reviewed information from my doctor, psychologist, and rehab therapists. The recommendation at this time is to sort out my meds and then a few months volunteering and then begin a gradual return. I hope the insurance co agrees because I know I'm on the path to wellness but it's slow and if I return to work too soon a third time I'm afraid another failure would be devastating both health-wise and emotionally. Not very cost effective for the insurance co either! I'm so happy to see everyone posting on this thread. Supporting each other through this challenge is so important. Makes it easier for us when we know we aren't alone. Sandi K xoxoox

Hi Shellie, welcome to BTG! You aren't the only 'yank' and I'm a Canuck so you will be very welcome here. Ths is a warm bunch of people who offer loads of support. I had a NASAH too, in Nov 2010. Sandi K. Xoxoxo

Ron, I'm so happy for you, congratulations! What a relief you must be feeling. I remember your earlier posts when things were not so bright. This is wonderful news! Sandi K.

It is a roller coaster, up and down, good and bad. The worst part is how unpredictable it is. You can plan as best you can for an event like going to a restaurant by having a quiet day leading up to it and planning quiet time the day after but sometimes there's a surprise and you need a few days to bounce back. If at least we could plan for our symptoms we could work with the recovery and feel like we have some control. It really doesn't make sense, it seems so illogical. Sandi K.

No Paul, I didn't have that. I wonder if you were reacting to some of the drugs used while in hospital? Sandi K.

Michelle, it must drive you around the bend when the neuro's advise the symptoms have nothing to do with the surgeries but it seems so obvious because none of this existed before. If they can't help why don't they refer you to someone who can? The 'brain business' should really take a team of specialists, not only neuro's but also all the people required after the brain has been 'injured' or 'fixed'. If a gastroenterologist (?) were to see Dylan and then work with the neuro to find help for Dylan it sure would make sense to me. Why are we always left asking all these questions and having to coordinate our care. The doctors who have the education should be working together to find a solution. How are you supposed to know who or what you need? I didn't even know there was a difference between a neurosurgeon and neurologist until 3 or 4 months after my SAH. I thought they were the same thing. Sandi K.