Sandi K

I've been doing 4 hour shifts three days a week for a month (volunteering in admin). Last week and this week the routine changed so my third day has been a 'write-off'. There is a good side to this though. Last week, on the second day my shift was 1-5 instead of 10-2. Next day I expected to be wiped out and was. I had a quiet morning to rest my brain and then met my husband at a warehouse store in the afternoon. We've found that warehouse stores are particularly difficult so I wanted to try going when it was the only thing in my day. It did work better that way. This week my second day I was taking training. Again the shift was different. 1-4:30. Changes to my routine are hard on my brain. Also, the class size was large, about 40 people. So there were people shifting about, side conversations, people checking smartphones and lap tops. All that distraction while concentrating on an intense and large amount of information is hard on my brain. I did find the vented earplugs to be quite helpful though, I'm sure I would have struggled more without them. I planned to go in and do my regular shift today, from 10-2. The good news is this: I'm not going in. This is good news because I'm learning to feel ok about having to back off from a commitment if my brain needs rest. For so long I would drag myself in anyway, do the shift and feel awful afterward, and for longer. I feel excited that I'm recognizing my symptoms and taking care of myself by not going in. I suppose it seems like common sense but for me in my back-to-work struggle this is a big deal. It's not about feeling sad that my brain is once again letting me down. It's about accepting that this happens and allowing myself to be flexible enough to stop, say no, and take care of myself. This is a step closer to actually getting back to work and it being successful. Sandi K.

Well done Kris, congratulations! You've come a long way over those 2 years. Sandi K.

Daffodil, sorry to read that your lovely holiday ended on a teary note. I can say that my travel methods have changed and how we plan our travels take into account my sensitive head. In November on a 6 hour flight to Hawaii I developed one of the worst migraines I've had. It took days to get rid. Not a nice way to begin the vacation. We are going to my hometown for a wedding and big anniversary party next weekend. We used to drive there without a thought. It's 12 hours including a 1.5 ferry trip. Since SAH we haven't been to my mom's many times. I think this is the 2nd time coming up. We've decided to book a flight to nearest 'big' city and then rent a car for the 3.5 hour drive from there. The flight is only an hour long. Stopping at the city for a bit to rest. I may be fine and perhaps the drive would be fine. But maybe not and its not worth the risk of bad head and days of fatigue. I'd rather plan for the worst and have a better chance of enjoying friends and family and making the most of my time there. Seems like a lot more planning is put into everything I do!! But no matter how much you plan you can't always know what's going to happen. It sounds like perhaps you were stuck in traffic? Hard to plan for that and not really anyway out cuz you have to get home. I think that would send my head around the bend too. Hugs to you, I hope you are resting now. Sandi K. Xoxox

Aww Wem, it's so frustrating when you are sure you've got it figured out and then the fatigue slams itself back into top spot. It's happened to me over and over again. Completely understand your surprise, disappointment, and sadness. Allow yourself time to rest and then start climbing that mountain again. We will all get there. We can't climb straight up, we have to go around so it takes us longer! Hugs xoxox Sandi K.

I really like your theory Daffodil. And Win, idiots and noise on TV can bring it on for me too. Iola, fatigue is a strange thing, it's unpredictable. It can be a delayed reaction, you may feel fine and the fatigue might take a couple of days to creep up or surprise you with a slam against the wall. You may only have fatigue for a few weeks during recovery or it could be around for awhile. It comes and goes but not like the tides unfortunately. It's really difficult to sort out triggers and understand how to avoid it. By paying close attention to early signs you learn how to stop it from knocking you down for long periods. You learn to rest and bounce back sooner. Your brain is the boss. Keep a log of symptoms and things like 'tight head' may show up repetitively. It will become clear when symptoms come that you need to stop and rest and have quiet for your brain. We are all different so it's impossible to know if this will be around for a long time or just a few weeks. Although we are different it sure is comforting knowing we share similar weirdo symptoms! Sandi K.

Hi Iola, I still get this feeling. I call it 'tight head' and most of my friends and family have heard me say 'my head is tight' or 'I have tight head' many times since SAH. It feels like a big elastic is wound round my head and something tightens it. I've been experiencing it this afternoon. It's once of the first signs that I need to stop and rest. I don't get the sinus pain as often as I did but it will still come if I'm fatigued along with other 'weirdo' symptoms like sore and heavy legs, hoarse voice, etc. My doctor doesn't know what it is, she thought it might be associated with migraine. I suppose that's possible, I have had migraines since SAH but not prior. Sandi K.

Excellent list Daffodil. Thank you for sharing Sandi K.

Hi Kris, I think quite a few members volunteer. It was suggested to me here in BTG and by my occupational therapist as a means to return to work so I could build my stamina and exercise my brain and learn how my brain works differently now. I'm volunteering in admin at the local Brain Injury Society. At first my brain was overwhelmed at 2 hours twice a week and learning and retaining information. I started that in December. Now I'm at 4 hours for three consecutive days and I've learned loads of new stuff. I'm figuring out what sends my brain into a spiral and what triggers my fatigue and all the 'weirdo' neurological symptoms. For example, I learned this week that if I'm buried fully in a spreadsheet and someone pulls me away to teach me something entirely different on the computer my brain will just stop taking in information. It freezes up and I don't retain. The fatigue starts. I need to be rested and ready to learn. If I'm fully focused and concentrating on a spreadsheet or other task I need to just stay there and work on it. No multitasking. Also learning how to use my earplugs in an office environment so that they benefit me but I'm still aware of what's happening. The best situation for me is quiet with no distractions. If its quiet I can do a longer day and feel better afterward. This is all stuff I didn't take the time to learn when I was returning to work. I was trying to be my old self and only became frustrated when it never worked. Someone said to me 'you had 40 something years with your brain before SAH. You've only had a couple of years with your changed brain. It will take time to understand how it works and what is different'. Volunteering has so many benefits. It's helping me to build confidence and understand I'm still capable, it's retraining my brain, building stamina, and helping the community. Good luck Kris, Let us know how it goes. Sandi K.

Hi Kerry, the pain from the blood dissipating will ease up. I used a warm wheatie bag like Daff did and I alternated with an ice pack. I also walked around my house, it seemed to help if I walked slowly through the house holding ice or warm bag against my back. I couldn't sleep from the pain despite feeling more tired than I had in my life. Couldn't lay down for very long because it was so uncomfortable. Couldn't watch TV and listen to the sound. The pictures moved too fast and the sound didn't seem to match and the adverts were unbearably loud! What happened to you was very serious and your brain will need some time to rest and heal. I tell everyone how special I am because I survived a brain hemorrhage. It's a pretty big deal. Surviving is the first part, taking care of yourself is what's important now. Give yourself time to rest and allow your brain to be quiet. Seeing your GP on Thursday to discuss everything is a good idea. Many of us find that writing questions down ahead of time is helpful and take pen and paper in with you. Sandi K.

Hi Kerry, welcome to BTG! I had a NASAH too and was only in hospital for three days. It's all a bit of a shock and it took some time for me to realize what happened. I had severe pain in my lower back after I came home. No one explained what it was and it wasn't until I found BTG a couple of months later that everything was explained to me including how serious the entire event really was. The most important thing at the beginning is to rest. Just rest. And drink lots of water. Slow down and rest and take as much time as you can for healing. Sandi K.

Hi Kayleigh, welcome to BTG! I didn't have a drain, wondering if that's a shunt? Others have and will be on soon. Weekends can be quiet here sometimes. Glad you found us, I think this is the best source for information about our 'special' brains. Sandi K.

Gill, good to see you in here and you are doing fantastically! Especially with the added before and after stuff in your day, Nathan's lunch and concert. I agree totally with you, I'm the same, one task at a time. Can only focus on one thing. When I have to cover reception I get totally wiped out and pretty cranky so luckily for all that doesn't happen too often! Daffodil, glad to have an update on your London trip. Very brave and you did it! How very nice for them to mention you at the meeting. That kind of support is reassuring. Most importantly, congratulations on sticking to your time limit, wearing your earplugs, and having your hat and sunglasses. It can be very tempting to stay longer at those events. I never want to miss anything and its an opportunity to see everyone. You've done very well. I've done my second 4 hour volunteering shift and only slight headache today. So far so good. In bed by 7:30pm last night! Sandi K.

I really love love love this thread! It warms my heart to read all the replies! Achievements start by being so small and work their way up don't they? I remember when it took all my energy to have a shower. That was all I could do. I remember when I could watch TV and listen to the volume at the same time and it felt like a milestone. I remember making hubby banana pudding and having to lie down 4 times through the process then a year later making turkey dinner for 6 and how wonderful that felt! I was so nervous and had all the steps listed out with times beside them. Having our wedding was a huge achievement! Date set three times due to brain not being ready. All the planning and learning to pace out the tasks over time and take it one step at a time. Planning every detail to ensure I didn't have to 'think' or make decisions on the day. Ensuring I had 'quiet time' throughout my day's itinerary so I could rest my brain. Finding ways to cope ahead of time in order to stretch out my stamina for the day was a major accomplishment. Sandi K.

I've been off for 14 months now. Seems like such a long time. SAH will be 3 years ago in November. I wonder if the combination of returning to work too early, struggling with denial that I was ill, and exhaustion delayed my recovery or impacted how much I will recover. It is so important to pay attention to how you feel and try to find a compromise with your employer so that you have a successful return to work but are also healing. I really feel for Mary and David who have to work a certain number of hours per week so that insurance still covers them. Being on vacation the last 3 weeks and not volunteering has meant my brain has had a nice rest from routine, no real decision making, not having to remember office processes, no alarm in the mornings. Just nice long walks in the warm breeze, lots of fresh fruit and veg and relaxing. Not having to 'think' makes a difference. I feel the best I have in three years. I feel like I can add hours to my volunteering but I'm being cautious, trying to remember that I'm feeling so well because I've been fully resting my brain. The earplugs and medication are absolutely making a positive difference to the level of fatigue I have but it's rest that helps the most. The brain needs rest to heal. Sandi K.

Hi Daffodil! Yes I had those tests done. It took about 3 weeks for the results to be compiled and I was given a 50 page report after consultation with neuropsych. I found it to be a huge relief. It helped me jump leaps and bounds into acceptance that brain had changed and I needed to stop trying to be the same as before. Of course it took several factors to truly accept changes but this was a big one. Everyone is different and will have different outcomes and results. Mine showed that I miss chunks of information during conversation. I know this becomes worse with fatigue. During meetings at work I would walk away thinking I had it all but I was missing pieces. Then I thought I was crazy. The testing was a relief because it explained what was happening. I know now that I need to write the important stuff down! I appear engaged and will even respond to specific conversation but once I walk away I'll have lost some of it. Sandi K.

I didn't wear glasses prior to NASAH. Ever since my vision is similar to Sarah Lou's. When I'm fatigued its blurry and will sometimes go double but less often now. I've picked up reading glasses at the drug store. All different levels and in different styles. Depending on how blurry my vision is in the moment I use the glasses with the strength that helps best. This works best at home as I don't carry them all in my purse. Sandi K.

Glad to see you went to hospital David. Good for you Mary, he needed a push. Sandi K.

What a good idea to say welcome to everyone when there are so many at one time Mary. Elaine, I feel as Michelle does. It's so wonderful to have many new members but it takes awhile for my brain to figure out who is who and what their story is. Especially lately cuz I'm not able to check in as often as I'd like. Welcome to everyone, check out the green room too. Lots of friendly chit chat in there that can help bring a smile. Sandi K. Xoxoxo

David, yes you were smart to step back. What a scary situation! You are right, you know your body. You were already sick and adding 2 hours a day onto a full day that was making you sick wasn't heading anywhere good. Will your employer honour the doctor's recommendation? Can you keep that pace and begin the disability process in the meantime? David, I feel for you. You are under a great amount of pressure to meet the demands of your employer while trying to take care of yourself. Good for you for making your health the priority though and following through with doctor's advice. Sandi K.

Hi Paul, I was wondering how you've been doing. Sorry to read that the benefits people are being ridiculous. It's crazy that people with brain injuries have to fight so hard to prove they need help. Sandi K.

Thank you for sharing this Lynne. I completely understand the giving in even when it's not your preference when you are fatigued and just don't have the energy to find the words to express yourself. I've done that many times over the last couple of years. It's something I would not have done so easily before, I was described as tenacious pre-SAH but I don't have the energy to be tenacious anymore. I am finding it helpful to say can we talk about this later. But that of course doesn't work in every situation. It's very interesting to see that generally people do this when ill or fatigued. I've thought about it many times wondering if I've lost my ability to stand up for myself. When I'm well rested I have no problem expressing my opinion on things though. It's helpful that you've explained this specifically. I'll be more aware now and hopefully less exasperated when I can't find my words, feeling fatigued, and stressed out. Good for you for working on this, the counselling is an excellent plan. Sandi K.

It's been a week with the earplugs. They are definitely helping. It's important to note that they are not a cure though. I still have all the symptoms in the afternoon when I get home from volunteering but they are different with the earplugs. I wonder if its because the sensory input to my brain is different. My legs and arms aren't as sore (still heavy) but I feel the sensation of floating down a river more. So it's like some symptoms have eased somewhat but the floating is more acute. Maybe it's just that I notice it more now with other symptoms easing. Wednesday night I just wanted the world to stop moving! While volunteering (in an office environment) I put them in when it's noisy but take them out when it's quiet. When it's quiet I find myself straining to hear so that uses energy. I am noticing though that by filtering the extraneous noise I've got some brain power left in the afternoon and can have a conversation without it being painful. Hopefully with more time and adjustment it will keep getting easier. Sandi K.

Hi Lesley! I don't think I drink 3l every day but I carry water with me wherever I go. If I get thirsty my 'weirdo' symptoms are worse. There is no doubt of that. Water doesn't take the symptoms away but they come on sooner, stronger, and stay longer without it. When I'm in a noisy area (one of the triggers for my brain to start complaining) I get thirsty. I wonder if our brains are working harder and needing more water. Sandi K.

Macca, well said. We have to find coping strategies to live with our new brain. New ways of doing things. It's not easy, I'm the one with ankles digging deep in the dirt from resisting change as I've been dragged along. Acceptance is a huge step in this process. We must learn to see the benefit of what happened to us. I refused to see any benefit for a long time. There are still days I have trouble seeing positive. I guess it's my way of making sense of what happened to me- finding some good in it. Most often now I focus on finding ways to do things that fit better with my brain. I'm not as productive as I was and sometimes unpredictably I'm knocked down for longer than expected by fatigue. But I keep going forward with the attitude of 'ok that didn't work so how can I do it next time'. Taking a bunch of stuff off my plate was the first step. Wearing sunglasses, earplugs, and carrying bottles of water everywhere was another step. There are lots of steps, lots of strategies. Pacing is such a big one. I doubt I'll ever stop learning ways to make things better - maybe one day I'll be fully recovered and find I don't need to work so hard at it. In the meantime, changing from the old me is the only way I can be happy and stay positive. Go with the flow instead of fighting it. Sandi K.

I picked up my custom made earplugs on Friday morning. The adiologist will call me next Friday to see if any adjustments are needed to the fit. I'm not sure if I'm just getting used to them but the right one irritates my ear a little. I wore them grocery shopping on Friday morning and was disappointed that I still felt yucky afterward. Reminding myself that these aren't going to cure me I wore them to the shopping mall on Saturday and out for lunch yesterday and while I was gardening amongst lawn mower noise yesterday afternoon. I still get neurological symptoms but it seems its not as bad. I still feel like I'm floating down a river while in the mall and I feel more steady if I can hold someone's arm. However, we were home at 4:30 and although I was ready for a lie down and quiet time I wasn't headachy and completely deflated. After an hour I was ready to prepare salad for supper. Normally the mall would bring on a load of symptoms and hours of quiet time would only help them subside a little. I will wear them grocery shopping again today and then volunteering for the rest of the week. I should have a better idea by Friday if these are really making a difference. Sandi K.