Sandi K

Mel, it's a big shock when we find that even doing the easiest things knocks us out. Pre-bleed all that stuff you listed would have been an after-thought. You would probably clean out your email while you were listening to voicemail and organizing papers on your desk, right? Now it's a major milestone to do any one of those things on its own. Just getting to work is a major part of your day. There is a lot of brain power required to get ready in the morning. Firstly, you may be waking to an alarm instead of allowing your brain all the rest it wants. You've got to figure out what you want to wear. Decision making starts early in the day! It takes some thought process-- what's the weather going to be like, what is my agenda for the day, what do I feel like wearing? The nervous excitement of returning to work takes energy as well. The anxiety of not knowing how our brain will manage takes energy. The saying hello to everyone and thinking of the right reply when they ask how we are is energy draining. Answering 'how are you' can be awkward. Oftentimes we look great! But if we aren't feeling great people look at us weirdly when we say anything but 'fine, thank you'. Negotiating our bodies through crowds is hugely brain draining. For me it is anyway. If someone is with me I always take their arm. I get 'lost' in the multitasking required. You have to think about where to put your feet, try to keep from bumping into other people, keep yourself safe from others bumping into you, try and block out the multiple conversations going on, all while being assaulted with the noise of the trains and bad lighting. While all that is going on in your brain you have the overall objective of ensuring you have the ticket and getting on the right train and getting off at the right stop. Just this part alone justifies a rest for your brain! What were once easy tasks that could be completed without thinking may now require the same effort as writing up something like a contract. It does get easier. It takes practise. In the meantime having respect for the amount of energy required for even the easiest of tasks is necessary. Give yourself a break. You managed a whole bunch of things your first couple of days. I'm learning that there is value in taking the time to complete even the smallest task slowly while concentrating and focusing fully on what I'm doing. It's helping my brain and acknowledging how hard my brain works for me. Keep a log of things you do in a day so you can watch your progress and try and figure out what triggers your fatigue. Right now it might be everything! But overtime you will gain the ability to do more. Sandi K.

The past week was my third week of three days, each day 3 hour shifts. 9 hour week. Had a headache that started the second day and went right through until I finally took something at end of third shift. Hopefully just a sign of adjustment. Besides it being the third week I was also working on new tasks in Excel and I stopped taking 2.5mg of my energy boosting med because I had been having trouble sleeping the 2 weeks before. My sleep is fine again but that change in med might be causing headache as could the working on computer in excel. It's hard to pinpoint exact cause. It feels good to be working on stuff that resembles what I did in my job (I'm volunteering). It feels familiar and comfortable. Onwards and upwards! Sandi K.

Hi! Although the spoon theory has been 'discussed' in other threads I'm thinking we have to remember that almost all the members have brain injuries and some might not remember reading about it before. Someone who remembers today might not remember tomorrow but then remember it again the next day. . -- and it may depend entirely on how many spoons they have left that day (how much energy they have and how well rested their brain is). It's also hard for us to remember to provide the links all the time too! Because after all, we have brain injuries. And I think I may have forgotten that I'm not supposed to have all these smiley faces in a thread unless its in the green room? Anyway... Back to how many spoons do I have. David I have a really hard time answering these questions. My brain just doesn't like calculating numbers and percentages and figuring out how much of what is anywhere. Thank goodness for calculators and computer programs. All I know is that I seem to have enough spoons right now but my cutlery drawer was empty of spoons months ago when I was trying to work. Sandi K. Xoxoxo

Hi Wem, I haven't had an opportunity to try this properly in a work environment yet but my Occupational Therapist told me to take small mental breaks when I have difficulty concentrating and feel easily distracted. She explained that some days the breaks might need to be a 10 minute walk every hour and other days just a stretch or eye rub every 20 minutes. She also suggested removing the distraction - shut the door or window. If you can't then try covering it up by plugging music in your ears it something like that. Personally I think the music would be too much like multitasking for me but it works for other people. The more fatigued I am the harder it is for me to concentrate. Sandi K.

Daffodil, I can't imagine having the courage to tackle a fundraiser at 1 year. I really admire your determination and bravery. Go easy on yourself. Our emotions in recovery seem to be magnified by 10 some days. It does get easier though as time goes on - although I remember thinking many times that the feeling of fright and anxiety was never going to go away. It has taken me what seems like a very long time to feel 'solid on the ground' and have confidence again. Self trust is something I've been working on - learning to trust myself and feel self assured again. Thinking 'I will be ok, I can do this'. When I don't feel well I remind myself that it's temporary. I will feel better after some quiet time and a rest. It's taken alot of time to get here and it's not perfect at all but my fear and anxiety has subsided in a big way. Yoga and meditation - even just deep breathing helps me in a big way. Hugs and congratulations on your success. Xoxox Sandi K.

Hi everyone. David, I can't imagine it. Pre-SAH a 47 hour work week was tiring and required a slower weekend to compensate. A 47 hour work week now would make my weekend basically non- existent. I'd be landed on the couch in the quiet with no conversation. Are there any head injury advocacy groups in your area? Maybe they have information on return-to-work or working with a chronic illness? Would your employer be open to job sharing at all? It seems that you are doing everything you can to make it work and surely your employer could be more creative and considerate! Teechur I do much better in warmer weather too. I wonder if too much of our brain energy is used on yucky days for keeping us warm? Wem, you go girl! Have you added more onto the 10 hours yet or will you stay there for awhile to let your brain get used to it? I'm at 9 hours a week volunteering now and so far so good. I do believe the Dexedrine is helping me. Some days I have more energy than others naturally, other days the Dexedrine gives me a little boost and just snaps my brain back into action. It only works to a point though. It wouldn't give me a whole 8 hour day and definitely not 5 eight hour days in a row. At least not yet. Sandi K.

Dan I had that lower back pain about 2 or 3 weeks after the bleed. At the very bottom of the tailbone. It was uncomfortable in any position for very long. I walked through my house every couple of hours with a heated bean bag held against my back. Then I would ice. The pain lasted a few days, maybe a week or two. I understand it's the blood making its way from your brain down through your spine. It's a step toward healing - but a painful one! Sandi K.

Well said Daffodil. I love the 'sand in your engine' comparison! Sandi K.

Hi Dan, welcome to BTG! I think it's true that when people get back to work full time and are having active social lives again they just don't post here much anymore because they are busy and active. Some actually say a sort of 'goodbye and thank you' before they go. There are people who either recover very well or become very good at coping with any changes due to their SAH. My SAH was perimesenchephalic (sp!) no known cause. I'm not sure if its any worse or better than other types. Regardless of what type of bleed we have it seems we all share experiences. The one good thing about this type of bleed is that it's not expected to happen again. Good to read you are resting and drinking lots of water. Breathe in fresh air and walk a little when you can. A little at first...one step at a time. Sandi K.

This is fun! And I like how three things we like have been included. Three things I miss: 1. Not having to explain that I'm fatigued and what that really means (Im not just tired). 2. The big paycheque 3. The sense of accomplishment from working Three new gifts I'm happy with after SAH: 1. My morning ritual of waking my brain slowly with coffee and iPad in dim light and quiet 2. Meditation 3. The experience of volunteering Sandi K.

Welcome to BTG Andy. So glad to see things are happier for you and Rachel. Looking forward to reading about your journey together. Sandi K.

Hi Scarlett, I've been following your thread. Welcome to BTG. Sorry you are going through this horrible time. I hope you don't mind me asking - why did you refuse the lumbar puncture? I've never had one but I understand that it can show whether or not there has been a bleed. Sandi K.

David it's not a wasted day. Good for you for using the opportunity to give your brain a well needed rest. If your wife had been home I'll bet you would have felt obligated to spend time with her on Sunday and you wouldn't have rested as you needed to. Sandi K.

Hi Kel! I hope you get an opportunity to consult with a neuro regarding your recent migraines. Based on everything said in your SAH follow up appointment it's most likely nothing to do with SAH but it's obvious you are concerned and as we must advocate for ourselves you must keep pushing to get what you want. Migraines can come for all sorts of reasons. One reason is peri menopause, I wonder if your GP would run some hormone tests for you while you wait for neuro appt? My GP has done this for me and all my numbers came back normal. I never had migraines until after my SAH, now I get some doozies that last days but thankfully not often. I've been getting them since right after SAH though and for you migraines just began recently if I remember right. We don't know why I get migraines but it must be associated with my head event. I'm sorry you are having to go through this and I hope it is figured out soon. Sandi K. Xoxoxo

Dawn, you have worked very hard the last 6 months. Your focus has been directed on getting back to full time, learning a new role, and learning to pace yourself. You've done incredibly well. Taking a week off has allowed you to take a step back and feel how tired you are. You made healthy choices when you cut back on your schedule during your week off. Rest was the focus and you've tried to stick to it. Returning to work on Monday may be a shock to your brain and it may take some time to settle back into the routine. Remember to eat little healthy snacks, take breaks, and drink lots of water. Hopefully your brain will settle back into routine easily. Sandi K.

David, my guy and I are attending an event at the Victoria conference centre in this month. Here's how I plan to do it. We are booking a hotel room a half a block from the conf centre. This way I can go there after volunteering and check in and have some quiet time. When Peter gets there we will join our group and go to the event. It's a chefs tasting event. You go from table to table tasting wee yummy morsels. I will duck outside when I need a break from the noise. I'll also have earplugs with me. Afterward it's only a short walk to my bed. The next day I'm not volunteering. Peter is thinking of taking the day off but he might go to work from the hotel. I'll have a slow morning and gradually make my way home. Sandi K.

Hi Scarlett, welcome to BTG! I'm sorry you are going through this horrible time of worry and anxiety. There are members here who have aneurysms who will come on and share their experiences. Some have their aneurysms monitored annually and some have had procedures done to avoid a bleed. The news must have been a shock for you, especially as you had been scanned and it was missed. I had a brain bleed where the cause was not found and I've found great support from the warm and caring people here on BTG. Sandi K.

Dawn it's so weird when we are absolutely certain of something (like you thought it was time to go home) and then we realize we are completely out of it. It's like being in the twilight zone. It happens to me a lot and I've come to quickly accept it when someone corrects what I'm saying because I know I misunderstand stuff and I don't remember things. It's not a problem with memory, it's a problem with retention for me but it's just easier to say 'I don't remember'. Your week off sounds like perfect timing. An opportunity for you to rest and get your feet solid on the ground again. Sarah Lou it sounds like you are doing really well managing all that's on your plate. It's such a juggling act to get the balance right and finding new ways to do things when multitasking is out of our reach. Volunteering is going well. I'm doing office work, focusing on one task at a time, not too much on the computer yet, a lot of organizing stuff which makes me feel good when I'm finished and what I've done makes sense to other people. As weeks go by I get more added on so it's a nice slow progression and one that would never be as slowly paced as the work place. So it works well for me doing this before going back to work. It's also teaching me the value in doing even the 'smallest' job slowly and well. I used to go 100 miles an hour multitasking and rushing to the next thing. I was thinking 'its good enough, I don't have anymore time to work on this'. That's the reality of the workplace but I'm hoping to build new habits and I'm determined to focus on things more and feel better about the end results. That's the goal anyway! Sandi K.

Hi everyone! I'm reading about the number of hours you are all working and it's really great! The full time hours that David and Dawn do scares me still but it's encouraging to read that they and others are finding what works for them. Although David, I do wish you didn't have to work with all the pain you are in. I was given the green light to add another 3 hour day to my volunteering week. That's the same as you i think Jane? Three days of three hours. Unfortunately I had a spot removed on my forehead for biopsy just as I was given the ok to up my hours. The black eyes and puffy face will put off my new hours for a week or two until I can heal and make arrangements with the society I volunteer at. The insurance company doesn't want to discuss going back to work until I'm doing more hours volunteering. It makes sense, I'm only doing 6 hours a week now and that's not a good representation of what they would hope my work week will look like. So onward and upward ever so slowly! Sandi K.

So happy to read that Dawn! It's really great that you act on the good ideas that you believe make the most sense for you. Your progress over the last few months has been truly inspirational. Keep going Dawn! Sandi K. Xoxox

Welcome to BTG! It's early days yet so give it some time and you will notice things feeling better. Drink lots of water and above all you need rest now as your brain repairs itself. Sandi K.

Hi Vanessa, feeling like I was walking on a boat and being dizzy in the first year of recovery was almost all the time for me, especially when I was working and my brain was tired. For me, it is one of the signs that I need rest. Not sleep so much as just rest. It means I'm doing too much. Along with feeling like I'm walking on a boat or floating logs will come the feeling of concrete blocks tied to my legs and arms and uncoordination. I'll need to hold onto wall railings or someone's arm. I drop things. I miss the counter when I go to put something down or when I'm passing something to someone it will fall on the floor because I think they've got it but they don't yet. The floor will seem to come up and meet my foot so my foot lands hard. The table will come up to meet the glass so it slams on the table. All of this only comes with fatigue for me and I can avoid it if my brain gets enough rest. I hope you feel better soon Vanessa. You've been doing really well. Are you suddenly working more hours or have you added to your routine? Sandi K.

Well said Lin Lin. I eat often because I've noticed the pattern too Dawn. My husband was diagnosed with type 2 diabetes months after my SAH. We eat differently now, as Lynne describes. I still have my chocolate stash though! Whole grains, yogurt, skim milk, lots of fruit and veg, nuts, lower calories. We eat every 2-3 hours but it might only be 12 almonds or 5 dried apricots as our in between snack. Our dinner plates are divided up as 1/2 veg, 1/4 meat (or some protein), 1/4 whatever else (starch - potatoes or pasta or brown rice). And I drink a ton of water all day long. It makes a difference. If my brain is hungry or processing empty calories then my energy is focused on that instead of something I'd rather be doing. Sandi K.

Dawn, I'm really inspired by your success after changing your role at work. I'm hoping that works for me too. I can completely understand how the extra hours and miles in your day would have been a nightmare! Now to recover from that. Thankfully your car is back and your routine is back along with it! Sandi K.

Hi everyone! I've had two phone calls in the last month with my insurance company explaining I'm feeling ready to venture gently back into work. I need their ok first and for them to fund an occupational therapist to support my return. This will be my third attempt so we all want to make sure it goes well. It will be a different job but same organization. I won't know exactly what until we start having meetings. There is so much planning that just getting things in order will take time. I've been volunteering 2 days a week in admin, only 3 hour shifts. Reluctant to bump it up without talking to an occupational therapist because I feel really good right now. . You all know that when we feel good we don't want to tip the balance in any way! It helps to read your posts and see what you are doing that works for you and what doesn't work. Sandi K.