Sandi K

Some very good points Dawn. Had you gone straight into the new role you may have always wondered if it was the right choice. I think I would always kick myself for not trying to return to my job. Now I've tried my old job twice and both times it was dismal I know for sure I need less responsibility and less hours. I feel fine with it but it sure took a long time to get here. Sandi K. Xoxox

Dawn that's wonderful! Such an encouraging post and I'm so happy for you. The doubling of the hours so quickly would have scared me too but changing your role seems to have helped immensely. Thank you for posting. Gives me even more reason to think positively of returning to work but in a different role. Sandi K.

That's a great idea Macca, I will do the same. A toast to BTG on Christmas Day. Sandi K.

Macca I'm so happy to read your post. How absolutely wonderful that your treatment is working! Sandi K. Xoxox

Hi there, you are one year behind me. Mine was Nov 2010. Sounds like you've done really well this past year! Going back to work is tough for many of us but you've managed it and say you feel well, that's really great! As Penny says, the things you describe are common for us SAHers. I don't have short term memory problems. I took some neuropsych cognitive testing a year or so ago. It took a day and a half. My problem is that I don't retain all of the information to begin with. It's especially worse if I'm fatigued. When someone is telling me something I'll remember most of it but some of it comes in one ear and goes right out the other immediately. I never caught the info to begin with so can't 'remember' it. I miss bits of info entirely. Multitasking is something I really struggle with. I need to stay on task and focus. Easily distracted and difficult to get back on task. To cope with some of this I write stuff down. When people tell me things I need to know I write it down. I have a day timer, a paper list of daily things to do, and an electronic reminders list and an electronic calendar synced with my husband's. Sandi K.

I'm having a chuckle too! Especially at Keith's 'lemonade' and 'over socializing' Sandi K.

Go Mary!! WISH I could still do that. Sandi K.

Have to admit I'm not able to drink much either. At first I was afraid to try because I had the hangover feeling like Daffodil. But now I will have a frothy eggnog with some spiced rum. A big mug with 2 shots and then I'm smiling and sleepy. No dancing! it was the earache and sore throat that got me trying the rum. If I'm in a social setting I use the same tactic as Lynne. A drink will last me a long time and I've had more water than booze when I'm done for the night. I hold onto railings, tables, and Peter's arm when I'm sober so can't imagine what a mess I'd be in if I were drunk! Sandi K.

So nice to hear from you Lynne and wonderful to hear that all is going well with the baby and all the support you've got in place. Hopefully the tests will show that what you are experiencing is temporary, I'm not sure if that's possible? Just hoping! Sandi K Xoxox

Hi Win Hope doc told you you need new glasses and nothing else to worry about. Hugs Sandi K. Xoxox

Hi Scoobs, the 1 year mark can be quite emotional. It brings up all the feelings and memories of what happened. Try and think about how much progress you've made since you came out of hospital. Even in the last 6 months. It's unfortunate that it happened but you've accomplished so much since it did. With the worry of your disability claim out of the way now the new year offers hope and you can spend all your precious energy on recovery. Are you planning anything to mark the Anni-versary? Some of us treat it like a second birthday and others just want to forget it and move on. I'm still at the second birthday stage. Sandi K. Xoxox

Hi everyone! Done three volunteer shifts at the Brain Injury Society so far. Each between 2-4 hours long. Mostly office work which feels good. Organizing filing drawer, filing, organizing a binder, and helping to plan a Christmas open house. Was working in excel yesterday for the first time in months and my eye sight was annoyingly much worse and I forgot how to do stuff that used to be done without thinking! Hopefully it will come back to me. It feels good to work on a task without having the responsibility of budgets, meetings, deadlines, staff, etc. it's nice to feel productive and helpful. Was exhausted on the weekend. This volunteering is all about figuring out my capacity for work hours and how much volume I can take on when I return to work. It's just the beginning so lots of time to sort it out. The Dexedrine is certainly helping. Sandi K.

Wonderfully inspiring post Wem! Thank you for sharing. Sandi K. Xoxox

Congratulations on 3 years Kel! You've provided lots of support and inspiration to many of us through that time and it's wonderful to have a summary of how the three years has gone for you. I hope you have a nice celebration planned! Sandi K. Xoxox

People run at all ages, well into their later years. I have a hard time with that one too. It would make more sense if it was directly tied to the FMD but to just be 'too old for it anyhow' sounds a bit out of whack. Glad to hear you've found an FMD doc. Things will hopefully start making sense when you see that doc. Sandi K.

Hi Claire, I've been reading this thread and haven't commented yet because I didn't have an aneurysm. My bleed was a NASAH, unknown cause. In some ways I suppose it's easier because when it happens it's unexpected. In other ways its still quite scary because I don't know what caused it and therefore if it will happen again (stats show it's unlikely though). I imagine having to persuade the medical profession to treat you is extremely frustrating, beyond belief! Especially when you aren't feeling well. Thinking of you Claire. Sandi K. Xoxox

Hi Teechur, I would imagine its almost a feeling of betrayal when you find out the docs didn't tell you everything. I got copies of my medical records and I'm so glad I did. Honestly, it took me a year to be well enough to google the medical terminology and really understand what it said! Once you've got your records you will feel more in control of the situation and as Kris suggests, it will be good to know so you can perhaps treat the never-ending headache. Sandi K. Xoxoxo

Hi Lisa, we get so many symptoms, I call them my 'weirdo' symptoms. Keep pushing your doctor, go back and ask about this. Anything that is causing anxiety, anything that isn't going away needs to be discussed with your doc. Congratulations on your 2 month mark! Sandi K. Xoxox

Hi Michelle, it's really great that you posted your progress. That's a lot of stuff packed into one day! You must be overjoyed! After many times before of thinking 'Im cured!' it would come as no surprise that you needed rest and sleep the next day so I'm hoping you aren't feeling sad. There is reason to celebrate! A day with energy is precious! It's so encouraging to read that more of these days come over time. Xoxox

Way to go Vanessa! The rotation sounds like a perfect start and I'm sure you will do well. Great news that your position will be supernumerary. That will help you a lot. Take as many breaks as you can. Get some fresh air, walk away from work area. Even deep breaths, eyes closed, and a stretch are helpful. Just stay in touch with how you are feeling. Think of how you would treat a patient in the same situation and treat yourself that way or better. Don't worry, feel the excitement and focus on that! Sandi K.

Hi Jord, so sorry to see you aren't feeling well today. It is a real roller coaster, especially in the first months. Like others have said I've often thought I was 'cured' when I've had a good day. It seems so unfair when we've felt good and like we are getting better and then the symptoms come back. Many threads advise keeping a diary of our symptoms. I've done this for over a year. It's really helps to see the overall progress. It's difficult to understand that you are recovering when day to day different things pop up. But keeping a diary helps you to know that from week to week and month to month you are actually progressing. Whenever you aren't sure about something don't hesitate to see your doctor. It will help to reassure you and ease the anxiety. Sandi K. Xoxox

H everyone! Time for an update here. I think it's been about a month since I went back to the regular Dexedrine tablets. The slow-release formula didn't work at all. Isn't it interesting that Karen found the same thing with a different medication. It was as if I hadn't taken the medication. All the fatigue and neurological symptoms came back. I had no motivation and was too tired to get anything done. My head was in a fog. Immediately upon returning to the regular tablets there was a positive difference. I take a very low dosage but its enough to zoom in on that part of my brain that needs a boost. When I first get up in the morning I take 2.5mg. It 'peaks' about a half hour later and lasts approximately an hour and a half. The fog clears, my sinuses clear, suddenly I become organized with my thoughts, I've got a 'normal' amount of energy and I can focus. Some days that's all I take. It depends what I've got scheduled in my day and how long my day needs to be. The most I've taken is 2.5mg first thing. An hour and a half later 5mg. And hour and a half after that 2.5mg. That gave me a good long day but it was a day of sight seeing on vacation so I've not had a chance to put it to the real test of being at work or something like that where my brain is required to be productive and focused. No side effects--fingers crossed it stays that way!! Sandi K.

Welcome to BTG Wem! Fatigue is a biggie! My rehab therapist and many BTG members will advise you to pace yourself. I've found this to be a hard thing to do!! The fatigue is unpredictable, it's hard to plan for and prevent but you just have to try as best you can. Schedule lots of breaks in your day. Even short 10 minute ones help. Make yourself get up and go for a walk at least once through the day. It takes you away from your job and gives your brain a rest and gets the blood flowing. Drink lots of water and remember to breathe and eat healthy at work. Your brain needs water and oxygen and good nutrition. Sandi K.

I tried twice to return to my role. The first time was ridiculously early (only weeks after the SAH) and the second time was months later but still ended up being too early. Even though it was a phased in return and I didn't take on all responsibilities I still took on too much, more than my brain was ready for at the time. Dawn, when I return to work the third time it will be in a different role. I'm not sure what yet but I've given up my previous position. I think it was too hard for my team and colleagues to adjust, their expectations didn't change and they didn't understand that my brain was different. The biggest part of the problem was me. Despite trying to educate people about my brain injury I was still trying to live up to everyone else's expectations and I was trying to be the same worker I was before. I didn't know enough about my brain injury to understand that I had to do things differently. I didn't know what I had to do differently. I thought I did, but in the end I really didn't understand. How could I expect those around me to change their expectations when I couldn't clearly explain what was different or what I needed? I'm hopeful that when I go back to work in a different role it will be a fresh start. I will be working with some of the same people as before but also some different ones. Hopefully the combination of a new role and different people will help me to better set my own expectations of myself. I've learned a lot in the last few months, I hope I don't forget it all! I start volunteering at our brain injury society on Tuesday. I'm looking forward to that. I've attended some classes there and joined the drop in sessions a few times. I will be doing admin stuff, helping in the office. This will help me understand what my return to work may look like and it will feel good to be volunteering in this organization. Sandi K.

Hi Bev, the unknown is scary. Not knowing if this is going to be forever or just during recovery and for how long. At 9 months believe it or not it's still early. I've come a long way from where I was at 9 months with symptoms. We all recover at different rates and long term side effects vary. I'm at 2 years now and although I'm feeling much better I still deal with fatigue and when I am feeling fatigued I get a bunch of neurological symptoms such as blurry vision, sore head, heavy arms and legs etc. I have more energy now than I did before but I'm taking medication to help give me a boost. I'm pretty certain now that my long term side effects (the stuff that just isn't getting better) is sensitive hearing, trouble dealing with noisy shopping centres and busy fast moving traffic and noisy restaurants. All of that just wears me out and brings on the fatigue and the boatload of symptoms. As time goes on I'm learning how to manage it all. It makes it easier but isn't a cure. I think I will be managing my time and tasks and doing my own personal energy-saving for the rest of my life. It's not the same for everyone, unfortunately we don't hear much from people who have 'recovered' and moved on. It would be wonderful to have them pop in sometimes and tell us at what point they started feeling better and if they have long term effects but have just learned to deal with them. Ad if so, how did they do that. I've had lots of help from a psychologist and occupational rehab therapist. Sandi K.