Sandi K

Dave we need to develop a strategy for you. Ways to make life easier through those long days. Like pre-prepared meals for example. Sandi K.

Macca, I do hope you come update soon. The decision you made didn't come easy and I hope you are doing ok. Well done for putting your health first, what a huge amount of courage it must take to make such a big life change. David, last year when the company switched to summer hours were you on a gradual return to work or were you working those long days? Sorry, I just remember 'summer hours' but not what you were working. I remember that leading up to September there was much concern. Daffodil, thank you for the poem. How are your days off? I hope you aren't having to spend your entire days off refuelling for the next day at work. Mel, with breaks and travel time the day is extended isn't it. Especially if you drive and if there is construction and detours causing sudden changes along the way. I'm still at 3 days, each 3.5 hours. It's going ok. Really felt it last week but despite being headachy today I'm feeling better this week. I'm getting my custom made earplugs tomorrow and I'm very hopeful that by having the ability to cut down on the noise 'assault' I'll be able to conserve some energy and extend my days. I like volunteering but I'm finding myself pining for work. Sandi K.

Hi Daffodil, get it checked out. If its all fine you will feel better just knowing that. You are doing wonderfully with your pacing and you've added some big stuff to your routine. I found it helpful to see my psych while returning to work the second time. She was good at helping me recognize symptoms that were slowly coming on but I was ignoring them while taking on more at work. It's not that you are doing that same, but your thought of seeing your counsellor is a good idea as you've got so much more added on now. Sandi K. Xoxox

Hi Lynn, welcome to BTG! Glad you found us. Sandi K.

I've bumped this thread up because I went to an audiologist today and was diagnosed with hyperacusis. A website tells me that 1 in 50,000 people have it and head injury is the number one cause. It's sensitivity to noise. I'm getting custom made earplugs. Was fitted this morning, the audiologist poured some kind of material into my ear canals to make molds. The ear plugs should arrive in three weeks or so. He explained that this is more common with brain injuries and although it won't be the cause of my fatigue it's certainly a factor in the level of fatigue I'm experiencing. I'm very hopeful that this is going to help. He explained that there are different types of earplugs. The ones we buy at the chemist which are one size fits all (my ears are too small and they pop out) block noise. The custom ones that are recommended for people who work in loud environments fit better and block all noise. And then the ones I'm getting which are 'vented'. Musicians use them because you can still hear the various tones but the extraneous noise is buffered. Will let you know how it goes. Sandi K.

Hi everyone. . Interesting observations written here about stress and overdoing it and the impact. There is no doubt in my mind that a stressful day (at work or anywhere else) impacts our fatigue. Stress impacts everyone, in our case we take longer to bounce back from the extra or long term adrenaline that is running through our bodies. It's just another thing that the neurons have to deal with along with the regular over stimulation in any given day. The brain tells the adrenal gland to get going because something is happening and then we have all that adrenalin pumping through when the brain really needs calm and quiet to focus on healing. Same when we push ourselves and overdo it when we need rest. We may not feel stressed at the time but I wonder if actually the brain is 'stressed' in that situation. Hence, the same impact? If I had a broken leg and was trying to walk on it longer than I should it would hurt. I wouldn't be stressed out but the leg would hurt from pushing it when I should have rested it. I've inched my volunteer hours up to 3.5, three days a week. I've only added an hour and a half for the week. Slowly but surely, onward and upward! I'm getting some custom made earplugs that should help buffer the extraneous noise which will hopefully lessen my fatigue! Sandi K.

People do look at us funny when we summarize by saying it hurts all over. I feel compelled to break it down for them and I worry that I sound like a broken record but they seem to comprehend more when I break it down into the usual: sore legs, sore arms, sore throat, sore head (tight head, elastic band around my head, ache on one side of my head), sinus pain, sore front teeth, concrete on my legs and arms, sore back, sooooooo tired, and so on with blurry vision and dizziness. Do you get tired of having to explain it all to people? I wish we could say I'm sore all over and not hear back "oh I know what you mean" from everyone - honestly, do they know what we mean? I sure didn't ever experience anything like this prior to SAH. Sandi K.

Daffodil, you ask if the impact will diminish. We are all different so it's not a yes or no answer. In my case I found it really difficult to stick to the agreed upon hours. I constantly over-reached both by working longer than I was supposed to and by taking on more than I should have. I was stubborn and determined to prove that I was as capable as pre-SAH and I would recover 100%! I've learned that I'm still capable. I have lots to offer and can contribute and be successful but to do that it has to be in shorter days. I haven't tested this theory for real at work, but its working for volunteering. I'm symptomatic at the end of my 3 hour shift but an hour of rest and I'm ready for my tasks at home, my bucket of weeds and making supper. The real test will come when I'm back at work and wanting to meet everyone's expectations again. Throw me a challenge and I forget the impact to me of meeting that challenge. Especially when it all feels so familiar, it's so easy to slip back into those habits. Respect yourself Daffodil and stick to the hours you've all agreed upon. Adjust the expectations both from yourself and your team as required. Delegate and ask for more help if needed to meet deadlines. Easy for me to say! Carl, life is getting better daily Sandi K.

I am 2.5 years on and I still get waves of dizziness if I've overdone it. Macca, that panic hit me once about 8 months after SAH. I didn't know where I was, I sat down and didn't know what to do. It was awful. I phoned a friend who left work and picked me up. By the time I had the friend on the phone I was able to explain where I was and what was happening. Horrible feeling. Sandi K.

Hi Mary, your fibro must play a part in this and it must be difficult understanding which is what. When I was working I had a lot of pain and exhaustion and all my symptoms were way worse. I felt like I was stuck in mud somedays and my legs hurt all the time. My arms hurt, head, face, a constant ache in the muscles. There was rarely a break from it. It took months of rest after going off sick before I started having breaks from the aches. It's been nearly a year now that I've been away from paid work and if I overdo it with volunteering and gardening and any other activities I feel the symptoms creeping back in. The more I ignore them the louder they get. Sore legs, arms, head, face, blurry vision, dizzy, hoarse voice, difficulty understanding conversation, difficulty retaining information, difficulty making decisions and so on. I feel a bit of something everyday as a reminder I suppose. Retaining information is always a problem for me. It is always with me so I write everything down but it gets worse as I get worn out. Sandi K.

Here I am too! 40 hours a week sounds so beyond reach to me right now. I can't imagine it and I often did 45-50 and sometimes more pre-SAH. Wem, our work sounds very similar. When I go back it will be project related. Starting small and working up. At first I'll be an 'extra' and then the plan is to move onto my own projects. It sounds wonderful and I'm excited! I'm also concerned though. I'm still at 9 hours volunteering and yesterday I came home so tired I went straight to sleep. I was ok an hour later but if it were a work environment with deadlines instead of volunteering I wouldn't last long at this point. You are right in that volunteering gives me an opportunity to see where I am, what I'm able to do compared to before, and without the pressure of expectations to be who I was before. I'm so grateful I'm able to volunteer before going back to work and I can only hope that at some point I'll build my stamina and get back to paid work. David I hope you get some good rest this weekend. Maybe check out the movie Dawn suggested. I loved it! It might give you an idea on a different way to make a living. Hi everyone else! Macca, stay strong. Sandi K.

I've always found it easy to give advice Whether or not someone is asking for it! Macca, it's very true that situations seem so simple when it's someone else but for us, we can't see it objectively and we are forever testing ourselves. Always trying to do things the way we did before SAH Didn't Einstein say something about not being able to change the outcome if you keep doing things the same way over and over again? However that quote goes it really resonated with me. It was like a second bang on the head telling me I needed to change my approach. Yet- I still catch myself trying to be as productive as I was and feeling down when the fatigue rolls in like a big black cloud. There are a few in this thread who have changed their jobs and it has worked well for them. Macca, it takes energy to do that too - finding a new job and learning a new job. I think it might be worth it though if you are very unhappy with where you are and if you are unable to scale back. Are you able to change roles with your current employer? Mel, I'm about where you are in shifts. Was really hoping to add hours by now but still not ready yet. Mary 'learn to pace' - seems like the hardest thing ever doesn't it. Does learning to pace come easy for anyone? Sandi K.

Hi Stevie and welcome to BTG. I was another one that believed I would recover completely and get right back to where I was. I told everyone I would recover 100%. 2.5 years on and I know my brain is different and will always be different. Now, instead of trying to get back to where I was I'm learning to live differently and listen to what my brain needs. Loud places bother me too. It's difficult to concentrate and triggers my fatigue. We went to a loud restaraunt for lunch yesterday. I remembered my earplugs and popped them in! I never go anywhere without earplugs, sunglasses, and bottles of water. It doesn't make it 'all better' but it really helps if I can buffer the noise, the light, and keep from getting thirsty. Sandi K.

Haven't heard of it but it sounds like good timing for me Lynne. Will check it out, thank you for the suggestion. Sandi K.

What a fright! Remove all sharp and dangerous objects from around your bed or as Daff suggests wear a helmet! All the adrenaline from the scare and shock will be playing havoc with your fatigue I imagine, on top of making your headache worse. Can you have a headache on top of another headache? Sandi K.

I'm so sorry for your loss, it was very sudden and it must be difficult to try and make any sense of what happened. I didn't lose conscienceness (sp) so I did feel pain but I've spoken with others who went out and they are grateful for it because they felt nothing. I wanted to comment on what Karen and Daffodil said about no longer being afraid of dying. I felt a deep sense of calm, quiet, and peace. Although it hurt like nothing I'd ever experienced before I didn't panic and I wasn't scared. I knew something was horribly wrong and I knew I might die. Although I was able to make my way down three flights of stairs to ask for help at one point I sat on the stairs and held my head and thought if I die right now it's ok. The hospital was able to take most of the pain away after a couple of hours. Shortly after arriving to the emergency room I panicked with all the attention I was getting and I began hyperventilating. But then I went back to being calm and peaceful throughout. It was like I was removed from the situation, almost observing what was happening rather than actively participating. It wasn't until I was discharged and began to realize over weeks what happened that I really started feeling the trauma of it. Sandi K.

Dawn, having a supportive boss makes such a difference! What a relief that you were able to change departments. If you were still in your old role think of where you would be now. I'm not saying its easy, you are working a tough schedule now but I wonder if it would have been at all possible in your previous role to work these hours. Wem, I hope you are feeling better in the next few days. It's really important to acknowledge how far you've come and how much you are doing. I don't always practise the advice I'm giving you! It's important to feel good about where we are and what we are doing. Compare to when you came home from hospital, not to how it was pre-SAH. Sandi K.

Thought I was doing so well with 9 hours a week. Three days, three hour shifts. Felt really good at the end of the third day last week! But went to a big warehouse store on the way home and I could feel the blanket of fatigue beginning to cover over me in the store. Although I've done a lot since that day (last Thursday) I've really needed more rest. Went shopping on Saturday, friends came for supper yesterday. Today I'm really feeling it. I've still done meal planning and grocery shopping, vacuumed, and went on treadmill so I'm managing to do stuff. That's it though. Cancelled meditation class and I'm on the couch now with my head squeezing in. Brain always wins! I had hoped to move up to 4 hour shifts this week and a year ago I would have done exactly that. I have learned something on this journey - you can't force your brain into feeling well. Sticking with the 3 hour shifts for awhile. Just going with the flow. Sandi K.

David I have definitely experienced the delayed reaction of a couple of days. I'll have thought 'I got away' with an especially busy day when I don't feel so badly the next day. But the day after that I can hit the wall. It really is so unpredictable and I've also thought its such a waste for me to try and figure out a pattern. Looking for triggers as Lin Lin suggests is better way to try and manage it. Sandi K.

Wem, this one is so tricky!! Ever since I joined BTG members have kindly advised me to pace myself. I had no idea what that meant. On rare days when I had energy I wanted to make the most of it. Especially when I was working. Carpe Diem! Use up that energy and try to catch up on the millions of things I was behind on! And if I still had energy once I came home I carried on doing stuff. Then the crash would come and my duvet days were spent on the couch in the quiet feeling awful. I'm still learning about pacing 2.5 years after SAH. I have a list of to do's everyday. Regardless of how I feel I try to get the basics done anyway but I don't push myself to the extreme. I can always carry things over to the next day. I plan my week so that my tasks are evenly paced out. This seems to be working for me, more so than when I was using up all my energy on a good day. Now, when I'm having a good day I still make myself rest in quiet time. It might only be a 10 minute break and then off again to the to do list but then I'll have another break of perhaps an hour. Doing this helps to extend my day. Will be interesting to hear from others about this as there must be other methods that work better for some. Sandi K.

Memory is so complicated. I had neuropsychology testing done about a year after SAH and I have something called 'selective attention'. The name makes it sound like I'm choosing to pay attention only to what I want. That's not it though. It means that I don't retain everything I'm paying attention to. If we are having a conversation I may only be picking up parts of it and I'm completely unaware of that. I think I'm getting it all. As a result, later, I don't 'remember' things but really I never got it to begin with. I didn't retain it from the start. It's worse depending how tired I am, just like all other neuro symptoms after SAH. As for shampooing twice or going to start the laundry when it's already started.... I'm practising 'mindfulness'. Sounds all new age but all it means is I try to really pay attention to what I'm doing in that moment. Again, it depends how tired my brain is. Anytime I mono task I have more success remembering what I've done and actually getting something done. Multitasking stretches my brain and as a result my memory gets scrambled. Sandi K.

I knew I wasn't well and begun going to doctor 2 months before. Had ECG on my heart cuz I'd been having palpitations and I was just so very tired all the time. Had a biopsy on a weird looking spot on my leg. All came back normal. Then lightening struck. I hadn't sorted anything. In fact, we were planning on a restful long weekend away beginning the next morning. Sandi K.

Hi Mitch, welcome to BTG. What a story you have!! I don't know where you are from but I'm wondering if there is a brain injury association near you. In the UK Headway comes highly recommended by many on this site. Where I am is the Brain Injury Society and there are many other similar organizations around the world. There is lots of wonderful information here too of course. We seem to get more meaningful information from people who've been through it like here on BTG and from those associated with Brain Injury organizations. Sandi K.

Hi Bernie, welcome to BTG. I'm not a carer, I had a SAH. I can only speak from my perspective but maybe it will help. Fatigue is a common problem for us and the more fatigued I am the worse everything else is. Especially in the first year our brains demand a lot of rest. When I feel fatigued (mentally and or physically) everything becomes louder, lighting is brighter (annoyingly), conversation is difficult to follow, tone of voice and words are misunderstood, I don't retain information, and decisions become almost impossible. Decisions about simple things 'what do you want for supper?' seem overwhelming. The best thing my partner can do for me when I feel like this is say to me 'you need some quiet time' and he leaves me alone. Sometimes for 15 minutes, sometimes for 3 hours. Whatever it takes for my brain to settle and allow me to manage again. Your husband will need your support, especially with going back to work so soon. It can be hard and it's going take all the energy he has to just work. Things like managing the house will likely fall more on your shoulders for awhile. When I was working all I could do was work and rest. Good luck to both of you. Ross is very lucky to have you, you've come searching for information which shows how concerned you are about him. Sandi K.

Hello, it's wonderful to see you back here and even better to read that you are doing so well. I agree with you on how helpful this site is. It has kept me sane. Sandi K.