Sandi K

Yes, I knew something was definitely wrong with me. I was feeling fatigue for months before the SAH. I said to people that I was exhausted and couldn't figure out why. Even vacation time and quiet weekends were not helping to refill my energy tank. I began going to the doctor a few weeks before SAH and explained I was not feeling right. We did blood tests and an ECG and even a skin biopsy on my leg thinking maybe I had cancer. Nothing was found. My doctor apologized and said she couldn't explain why I felt exhaustion and general malaise. 2 weeks later I had the SAH. A long time afterward, doctor and I realized I was likely having sentinal bleeds. During those months before I would wake up with a weird headache at the top of my head. It would go away seconds after waking. I'd never felt that kind of headache before but I didn't think anything of it because it went away so quickly. Until the big event when it was much worse of course. I've wondered if I had told the doc about those headaches if it would have helped. Sandi K.

Iola, sustaining attention is one my problems too. The getting up and walking around every hour or so also helps me to refocus. Some days it's nearly impossible though, it depends on level of fatigue for me. Wondering if you've had a neuropsych assessment done? It will pin point any attention problems you have. Having my report is helpful for my return to work because it outlines in detail what I need. Much better than both my employer and myself trying to guess as we go along. Sandi K.

I'm overdue for an update. Have been avoiding it because my new boss quit! I think it was the second week, my third shift. I was shocked and suddenly feeling very uncertain. It was such a good way to slowly dip my toes back into work and new boss really seemed to understand that I need quiet, focus, and few interruptions. I was so relieved that I wouldn't have to be advocating for myself constantly and explaining the whys of how my brain works now. Since then there still isn't a replacement, so I'm continuing on with my project and working from home as planned and trying not to worry about where this will go. The good news is that working from home is brilliant! I can really control the distractions. By keeping the environment quiet I'm able to really focus on what I'm doing. I need to get up and walk away from the computer for a few minutes every hour or so but mostly at the end of the shift I still have energy left! This week on my last shift the unpredictable fatigue crept in about half way through and I wasn't very productive after that. Staring at the computer trying to finish something that would normally take a few minutes but I just couldn't figure it out. So very frustrating but it happens and next time will be better, and if it's not then the time after will be. Sandi K.

Hello everyone! Sarah Lou, there is so much change for your brain. You need time, give yourself a break. Think about what you would say to one of us in the same situation and say that to yourself. Care for yourself. You are in a new routine and learning new things. That's rough for us SAH folks! Dawn, how are things now? As I read your posts I was thinking of you working with two systems side by side, old and new and no wonder you aren't keeping up. Really, you are trying to do twice the work in the same amount of time. But actually, it's more than twice the work because you are learning the new system so that takes longer (brain injury or not). It sounds like your supervisor is supportive as long as you remind them of your needs. That can be awkward and uncomfortable, to have to keep bringing it up. But you do need to advocate for yourself and keeping a folder of your progress is a great idea! Because not only can you show them a picture of what's happening but it also reminds you of how skilled you are at work under good conditions. I returned to work this week! Yay! Mondays and Tuesdays for 4 hours. Different job, same organization. My boss for the next three months is a doctor who knows a bit about brain injury. I am feeling blessed. Mostly I'll be working from home but for the first few shifts I'm going in for training and meetings. So far, working quietly in her office. She arranged for one-on-one training. The quiet and one-on-one is fantastic. Much easier for me to retain information. Felt great at the end of yesterday but woke up with a whopper of a headache this morning. I'm sure it's just the change of routine and over-use of my brain and I need to settle in to new world. I'm very enthusiastic about this, and I will stick to the schedule. This time, I will look after myself. Takes a long time to learn what that means. To learn what we need in order to care for ourselves. I'm still learning but I'm much more informed now and have a better chance at making this return-to-work successful! Sandi K.

Well done you!! Good advice you are giving us, thank you. Sandi K. Xoxox

Not much has changed for me yet so haven't updated for a long time. However, things are about happen! I've been volunteering same shift for some time now. Tues, weds, thurs 4 hours each day. On Fridays I take a 2 hour Coping Strategies class through the Brain Injury Society. It's been really great. 25 weeks long and half way through now. A lot of it has been validation which can be a wonderful thing. Knowing we aren't alone and that things like fatigue and attention problems that I struggle with are shared by others is comforting as we talk about our experiences and learn how to cope. My neuropsych report was finally ready near the end of December. In it are specific recommendations for returning to work. It's nice to have it mapped out. When I tried to return the first time only weeks after SAH I was very much in denial that anything had changed and thought I could 'work' my way back to how it was before. Not much had changed the second time except I became very sad and felt totally defeated and betrayed by my brain! My employer was willing to adapt at work to accommodate me but the truth was that neither of us knew what I needed. Nothing seemed to work. I couldn't even go for a walk without my body screaming at me from fatigue never mind write briefing notes or remember anything from meetings. Volunteering for over a year in an admin role has helped so much. There is less pressure to perform. Volunteering at the Brain Injury Society is also good because it's really been a safe place for me to learn how my brain works now. There have been frustrations and tears, lots of them! Many attempts to return to my old familiar work habits. Sadness that those habits don't work for me anymore. But, there is also a feeling of optimism as I've come to realize new strengths with this 'new' brain and as a result new and different doors are opening for me. Summarized, my 36 page neuropsych report recommends that I work in a quiet, distraction free environment with no time pressures and part time. I've had a couple of meetings at work and lots of ideas are are on the table. I'm positive we will come up with something that fits for my brain. It's early days yet but just talking about it is exciting! I'm going in with eyes open. I know my old habits will still creep in. Things like working beyond the hours I'm supposed to, not taking the required breaks, etc. Personality is a hard thing to change. I tell people I had 46 years to become who I was. I've only had 3 years to learn about my new brain. This may take more time! Sarah Lou I'm looking forward to reading how your new career is going. I imagine it's exhausting at the beginning with learning new things. I hope you are settling into a routine and feeling well. Dawn, I've been following your journey. It's wonderful that you were able to change your shifts! Onward and upward everyone! Sandi K.

I'm 3 years on and still figuring out who the new me is. Some new things come quite naturally now. Like grabbing my sunglasses, water, and earplugs before I leave the house. Spending anywhere from 30 minutes to 3 hours laying down every afternoon feels quite normal now. But there are many times where I have to pause with confusion because I don't know how to move forward. I wish I could stop and do a mental check in with myself but 'myself' doesn't know what all the answers are! If I'm asked to do something (like give a talk for example) after 3pm I'm really thrown off kilter. I want to say yes! The old me would just do it. Or if I've got a couple of tasks on the go and someone asks me to do another and I've only got an hour before I have to leave I get muddled on what to do because there are so many things to figure out. Do I have enough time, can my head manage another task, how do I feel right now - do I need a break, do I know how to do his, will I remember the instructions.... I was saying to someone this week that I'm looking forward to the day when this more complex stuff comes as naturally as knowing when to put my earplugs in. For now I'm still drawing blanks more often than I want to. I suppose the good news here is that my expectations of myself are different and trying to be observant in learning who I am now. Sandi K.

Zoe, I'm so sorry this has happened. Thoughts are with you. Sandi K.

Dawn, I'm just seeing this today. I hope I'm not too late to weigh in on the forms. At one point I summed everything up as fatigue. When I said I had fatigue my doctor asked me to describe it in detail. My detail included heavy arms & legs, sore muscles, sore throat, hoarse voice, tight head, head ache, and the list went on. I also include inability to concentrate, plan, organize, problem solve or make desicions and an overwhelming feeling of exhaustion. Many of you have seen me write it here as my 'weirdo symptoms'. My GP said she would sum it all up as neurological symptoms from subarachnoid hemorrhage. She includes fatigue as one of the symptoms right alongside the others like sore muscles. Just a thought. So many people just do not know what we mean when we say fatigue. It does not mean we are 'tired' because fatigue is so far beyond tired. However, many people think 'tired' when they hear the word fatigue. Sandi K.

Wondering how it's going for everyone who is back to work. I finally cleared my old work clothes out of my closet this past weekend. What a huge turning point! Part of 'letting go of the old me'. I'm pretty sure my neuropsych is going to recommend I start returning to work gradually again (in a different capacity and slowly) and that's exciting! And scary all at the same time. In the meantime I'm volunteering and have begun a 'coping skills' class every Friday for 2 hours and runs 25 weeks at the local brain injury society. Sandi K.

I'm still finding the Dexedrine to be helpful. I don't take very much. Usually only 7.5 mgs a day. Some days I will take double that spread over several hours if I've got dinner plans or nighttime plans but that isn't very often. If I take too much it brings on a headache. If I forget to take it the fatigue slams hard and fast and includes sore arms and legs, foggy confused head, tight head, hoarse voice, and exhaustion. 20 minutes after taking the med I perk up again. I asked neuropsych if this is causing any problems for brain recovery and he didn't believe so. On November 15 a pharmacist is coming to meet with a group I'm attending and I hope to find out more about long term effects. Sandi K.

Had 2 days of testing two years after the first testing. The first tests were done 1 year post NASAH. The second tests done at 3 years post NASAH. First time my executive functioning (planning, organizing, decision making) came out in the low 30% range compared to others my age. This time the number came in at a whopping 95%. Great improvement! Still problems with attention though. There was some improvement but not much. Neuropsych said I may continue to improve but it will be slow and I will likely always have problems in this area. Selective attention: having difficulty filtering noise and distraction to select one thing to focus on. Divided attention: I like Daffodil's way of saying I am now a great unitasker! Not a very good multitasker. Sustained attention: I'm good for about 10 or 15 minutes and then I'm done So I'm telling everyone I'm really smart again but can't pay attention. I don't have the written report yet so I'm going from memory. Once I get the report if there is anything else interesting I will be back to share. Sandi K.

Well done Daffodil, thank you for sharing. I like the term 'unitasker', I'm going to steal that! Sandi K.

The idea of 'letting the brain injury win' is not the right way to think of it and Dawn I'm sure you blinked at that comment. We need to learn to cope with our daily challenges with brain injury and part of that is learning what our capabilities are. Everyone is different, if your quality of life will be better with fewer working hours then that is absolutely the way to go. Hopefully the info Lynne and Daffodil have provided will help get you there. Ask your friend if running on a broken leg is the way to heal it and when it gets worse is it letting the broken leg win? Came home from volunteering with a rotten head today. Very noisy on Wednesdays at the Brain Injury Society where I volunteer. Plus I'm training new volunteers and still have my own stuff to do, spreadsheets and such. I've come a long way from when I started but days like this remind me why I have short days. Sandi K.

Susan, wow! This is such a good description of me! I can imagine your head being tight after writing that but what a fantastic piece of work you've created. Sandi K.