Sandi K

Hi Mary, I'll be over the moon if Vit D supplements take away my fatigue but somehow I don't think I'll be so lucky! My vitamin B levels and hormones are good. Sandi K.

Hi everyone, I visited my GP yesterday and went over the results from all the tests I've had done. Only one thing lacking, vitamin D. Everything else is great, cholesterol, etc, other vitamin levels, hormones, liver, kidneys, all good. I don't think Vit D deficiency causes fatigue but GP says its possible. We talked and I explained that a few minutes into brain games my weirdo symptoms come back. We agreed I need to rest longer so I go back in a month and in the meantme carry on with what I'm doing. My GP doesn't doubt that I have fatigue but because she's never had a NASAH patient before she doesn't know what to expect. I think she's surprised that I seem so 'with it' but start to get the headache and sore legs and blurry vision as soon as we start discussing something that requires my concentration. It's been said here before, some of us have fatigue from our SAH. I'm kind of sad we didn't find some other reason that could have perhaps been easily fixed but now that I've been tested I know I'm otherwise healthy but still recovering from the brain bleed. Sandi K.

David, I'm so glad you had a better week. I hope this one goes well too! Carl, please tell us if they accepted or denied your claim for the three days. How are feeling after that dental work? I'm going to be doing some of my brain games today, onward and upward! Sandi K.

Kel is right, it does get better. I'm at about 19 months now post NASAH and I'm still sensitive to noise, light, and smells too but all have eased up gradually since the early days. Same with my startle reflex and anxiety. I would also jump when Peter walked into a room even if I knew he was on his way into the room. For a few months I was really scared to walk my dog too far from my house. I was afraid we would be attacked by dogs or a cougar. I would unlock our house doors and then walk Farley around the house, always close to a door so we would have easy access to safety. Thankfully that feeling went away, what a relief! I can sit in restaurants now but do better in quiet ones than noisy. The noiser it is the more concentration is required at the table and the more drained I am at the end. I always wear sunglasses, even on cloudy days. I never go anywhere without earplugs, sunglasses, and a bottle of water. Sandi K.

David, the book that Carl and I recommended explains in the beginning that trying to heal a brain injury with self determination is like trying to see when you are blind or hear when are deaf through self determination. I'd like to see your 'friend' in your shoes for a few days! Sandi K.

I wonder how Macca is doing in Crete. Ahhh that would be nice. My rehab therapist came to my house today. She is very good at telling me about other clients with brain injuries who are going through similar frustrations. She said it can take years and years for some of us to accept what's happened but we can still learn the coping strategies to help make our lives easier in the meantime. She also explained that I will work again but right now I need to focus on recovery. We spoke for an hour or so and then did some brain games. I find these conversations helpful and appreciate that she gives me examples of others and how they are coping. The more I hear the more encouraged I feel. Any brain games (even connect the dots) becomes much more difficult when a radio is on in the background. My brain just does not want to filter the noise. Interesting, we played one game that brought on a bunch of my weirdo symptoms. I was surprised at the impact of this game. It's so simple. We played with no radio or other distraction it was just quiet. She would say a letter of the alphabet and I would have to say the letter that follows 2 down the line. So if she said A I would say C. If she said T then I would say V. We did this for almost 15 minutes. By the end my head hurt, my legs hurt (I was dragging my feet to walk her to the door), my vision was blurry, and I began to lose my voice. Holy cow!! It's not so much the game itself, it's the level of concentration required. It really showed me that I have a long way to go. Sandi K.

Hi Paula, warm welcome to BTG. I'm Canadian so can't offer anything regarding your sick pay rules. I agree with Win that you need to be careful about going back too early. Your brain needs rest to get well. Mental and physical activity drain your brain in the early days and you are still in the early days. Don't feel guilty about what happened to you. It's not your fault, you didn't cause it. It just happened and now you have to focus on getting well. Lots of quiet is important and drink lots of water. Sandi K. Xoxooxox

Hi Stephanie, warm welcome to BTG. You've come to the right place. We know what you are talking about. It was at about the 4 month mark that I was very emotional. Lots and lots of tears. There have been lots of tears since but that period of a few weeks was a daily thing (maybe even hourly!). Anything set me off, I want to say the way the wind blew. Prior to that I wasn't a cryer. I was a tough one, strong emotionally. A 'get on with it' type of person actually. I think it might be part of the healing to feel all the emotions. Let yourself feel the way you do. Sandi K. Hugs. Xoxoox

Emma, I'm so pleased to see your progress! Thank you for coming back and sharing with us. It's wonderful that our tips are helping. Keep up the good work, you are doing great! Sandi K. Xoxoox

Macca, I hope you slept well. Two more days and the week is done, you are more than half way now. I don't know about 'sanity clause' but I sign the kids Christmas presents with 'sandi clause' have a good day Sandi K. Xoxoox

Mags, so many good points in your post this morning. I agree wholeheartedly that Michelle is spot on with her description that we can't fix this one through self determination. Michelle, you really did hit the nail on the head. That's sums up exactly what I've been trying to do. My GP said its important to do at least 30 minutes of physical exercise everyday to balance the mental fatigue with physical activity. I found it impossible when I was at bottom with fatigue and feelings of negativity a couple of months ago. It was only once I began to lighten my load (resulting in some rest for my brain) that I was able to begin doing the exercise again. Now Im doing it every day and it feels great. I agree that it gets your blood flowing and gives your brain a break from cognitive activity. You need some energy to begin with though. If you have no energy it's a good sign you are doing too much (speaking to myself here!!!). My psychologist has been speaking about mindfulness. About focusing on what I'm doing as I'm doing it. I suppose that also gives the brain a break if you aren't planning too far ahead all the time and thinking of the 20 other things you have to do. I find it easier to do this when there aren't deadlines. So it's easier to be mindful planting flowers at home than it is when writing a briefing note at work (where there are 20 other things that need doing at the same time). Funny though, the mindfulness would be better served with the writing of the briefing note. Yoga and meditation help focus the mind. You need energy to go. All of my energy was being used at work. I wasn't just giving the best of my energy to work, I was giving all of energy to work. Being at home had become a refueling station. Resting in order to go back to work. But it got to the point where I was never getting enough rest. This post doesn't sound very inspiring! I always believed that a person should work first and everything else comes after. Food on the table, roof over your head, and fun. It all follows work. Get your work done and then you can have fun. Now I'm learning that I worked too much and it impacted my health. Now to find balance that fits my brain. Sandi K.

6 hours! Nothing like marching right back in there! Are you gradually back in or is this 6 hours everyday until you finally get your next set of tests? Can't believe you are having to go through this and I can understand if you are feeling any bitterness at all. You are certainly taking the high road on this Macca and I admire you for it. Chin up, making the best of a not-so-good situation. Hopefully these weeks leading to your next set of tests will fly by and your legs won't be pulled too far down into that treacle! We are here alongside you anytime you need to vent. Sandi K. Xoxoox

Hi Macca, it's hard to be objective with one's self. Even as a manager at work I was very quick to send people home if they were sick. But I would drag myself in after an SAH when I was having horrible headaches and couldn't comprehend conversations only weeks after the event. I've never been objective with myself and always pushed hard. That's why I was so successful (prior to SAH). I get that. But I think I need to step back and reassess now in order to be successful again. Success may need to mean something different. Instead of 'upwardly mobile' and big pay paycheques it might be more about reward and accomplishment, good health and balance with family life. Oh my, who is this typing this?! The life plan has to change to fit my new head. I don't think I'm being pushed into believing anything that isn't true. Peter has been saying for months that I was doing too much and working too many hours. I just had the blinders on and insisted I could do it. I still have a lot to offer and I will get back to work in some form with my employer. It will just be something that is more reasonable for my health. That can only benefit my employer because I'll be far more productive and more reliable and people won't have to worry about me keeling over! I need rest first for my brain and fatigue. I need to build my stamina and work with my rehab therapist and neuropsych. It will all be good in the end - just have to try and remember that along the way. There will be more crashes on this journey I'm sure. So grateful for the support here. Sandi K.

I just want to say thank you again to everyone. Today was a roller coaster day. Started out laughing in the green room but quickly moved to anxiety and tears when I saw my job posted. All through the 2 hour rehab session my eyes were teary. My rehab therapist is very understanding! Then I read your posts and calmed down a bit, spoke with Occ Health and calmed some more. Worked in my flower beds with my husband and threw the ball for my dog and felt pretty good. Went to yoga and thought about how things happen fr a reason and everything has a purpose during meditation- felt great! Drove through McDonald's for ice cream on the way home. Roller coaster day. The rehab therapist told me that of all her clients, those recovering from brain injuries have the toughest job. Sandi K.

Seeing my job posted really threw me today. Lots of tears. It's all part of acceptance and making changes and understanding I can't do what I once did. Sometimes I think I'm doing well with the whole process and then I'm shocked by how I react to something. This change in my life is definitely a struggle. I feel a bit better now. I spoke with Occupational Health and although I won't have that job anymore I will have a job. I did know that but needed reassurance. Michelle, you are right, there should be no self blame. Easier said... ! Ok, back to the positive. Because I just can't bear to be down for long. Rehab for 2 hours today!! This is focused on getting me back to work in some capacity. She came to my house which is nice. I'm not all exhausted from driving to her office. She played CD's where there was background radio news and an announcer saying various letters and numbers. I had to listen for specific letters and numbers and filter out the other noise. This as you all can imagine is very hard! I did ok on the slow ones, not as well on the fast ones and my head hurt. We talked a lot about expectations and self awareness. Interestingly it seems I'm not very realistic in my perception of my capabilities. I would agree with that. 3 months ago I would have argued it. Now I know it's true. I volunteer for stuff I'm not ready for and take on way too much and I don't ask for help. So she left me some excersices on self awareness. Also some brain puzzles, taking your pen through the maze and stuff like that. I'm to do these brain games 1 hour a day, my physical exercises 30 mins, and work in flower beds 1.5 hours a day. She comes back June 6 and we reasses. I feel a lot better. There is a plan. A plan with activity. Things are looking up. Thank you everyone for your responses. Where on earth would we be without each other. Sandi K. Xoxoox

There is something surreal about seeing your job posted when you haven't quit or been fired. My job is now posted. I totally agree that work defines us. So who am I now? Someone with a job who isn't working and doesn't own a position. Lots of unanswered questions and uncertainty. The feelings of failure still lurk. Shame for not being strong enough to overcome this brain injury that has left me looking fine. Only those closest to me know I'm different. This definitely was not the life plan. Sandi K.

Mary, were you sitting in on my last psychology session? I kept saying this isn't the life plan, this isn't how it's supposed to be. I'm not supposed to slow down for another 8 years. Ugh! David, I'm glad you responded, just like Mary I was worrying about you. Im sure many of us were! It's pretty incredible that you found the energy to reply to everyone! I hope this weekend brings you rest. A visit to the pain clinic is a great idea! There must be something that can be done for the headache. It seems we are all taking different things so surely there are more options available to you. I really hope you feel better Friday morning. Sandi K. Xoxox

A couple of weeks ago (maybe a bit longer, my dates are mixed up) my GP said 'no matter what I want you doing 30 minutes of exercise everyday to balance the mental fatigue with physical fatigue'. She said if I was working to go for a 30 minute walk. I found it impossible to keep up the physical activity when I was immersed in my full workload. Even though I was only working 3 out 5 days a week it was exhausting and on my days off I crashed. Lifting myself to go get groceries was as much physical activity as I could muster. Once I began handing off duties at work and my load was lighter I started the walking. It was so tiring, would have to put my head down when I got back. Everything hurt. Not pain from a good workout, this was pain from fatigue. Now that I'm not working Im on the treadmill or bike and doing yoga everyday. It feels incredibly good!!!!!! What a difference. Those feel good chemicals are active and I have the right kind of pain, the pain that says 'good workout!'. What's my conclusion? Well... I was never going to be able to do the 30 minutes while I was over stretching my brain. My GP is right in that I need this physical activity, but I had to address the problem of fatigue first. I needed to make changes in my day to allow for proper pacing and right now that means I can't work as much as I was. Sandi K.

David I am so sorry you are feeling this way. Its an awful feeling when you can't see the light at the end of the tunnel. A headache for almost a year straight would drive anyone nuts. The pain from fatigue isn't understood by anyone whose never felt it. The tears are about the only thing that makes sense. Tears of pain, frustration, and sorrow. We get to a point where we are so exhausted that the only expression we have left is tears. What is keeping you at work. I'm assuming you have used up your sick leve and beneifits and risk losing or will have to give up your job if you request time off? Can you afford to take a month off? You have shown incredible strength and determination and loyalty to your job by ramping up so quickly. I have stood by reading your posts in awe of your persistence. Despite all odds you have pushed through. I've thought to myself many times 'why can't I be more like David?'. If you can afford a month off now you could remind your employer of the initiative and dedication you have shown and explain that you are exhausted and need time away to recover further. Is it an option? At your return you could then assess where to go from there. Right now you are so exhausted I'm betting that you aren't thinking straight. I sure wasn't back in March when I was overwhelmed with fatigue and could barely put one foot in front of the other. The one thing you need is rest. I wish I could send you some spoons. Sandi K. Xoxoxo

Anne, thank you so much for your post. I will come around. I'm never down for long, especially when I read inspirational stories like yours. GG you are right, it is a process and honestly, regardless of understanding the logistics of it all there are still the emotions to deal with aren't there. So true about the job and way of life being tied to our identity. SarahLou, hon I recognize where you are right now. I wouldn't wish it on anyone and I hope you are resting and filling your soul with things that invigorate you. Somedays don't you wish we could just make time stand still for awhile? In the quiet. Cath thank you for the words of encouragement. One day I'll look back and read all this and say, 'why was I so worried?!' Sandi K. Xoxoox

Thanks Mary. Peter likes anyone who agrees with him about this. Sandi K.

Feeling a little down today. It's all becoming real. My position is being posted so they can find my replacement. I know it's the best thing but it's still hard. Everyone assumes I'm 'cool with it' so no one has taken any extra time to ensure I'm ok with this. They are plowing ahead. I guess that's the best way but I feel a bit cast aside. My boss said 'don't worry, we will find you an awesome job'. So again I know I'm beyond lucky and will be ok but I can't help feeling a bit sad. It was my office and my dept and we were going in my direction. I don't know what I'll be doing when return to work. Peter says its a good thing, he calls that job the 'widow maker'. He said it was too demanding and he doesn't want me doing it again. I know health wise this is good for me and the right decision. I need to think forward and know that I'll land on my feet and be healthier and happier. It's still hard! Sandi K.

Hi Rhiannon, good to hear you were able to negotiate your return to work. Sounds like it worked out well but the half pay will take some getting used to. I get 3/4 of my pay but even that took some getting to. I hope you are able to qualify for benefits. Sandi K

So far, for the most part my sleep is ok. Sometimes I'll have trouble falling asleep or I'll wake up really early despite feeling tired but mostly my sleep is ok. My doctor keeps asking me about it though and I wondered why. My GP always assumes my sleep is messed up. So I was googling awhile back and found information about fatigue and sleep. Often accompanied with fatigue is a messed up sleep pattern. Despite feeling tired you can't sleep. I have felt this but more so in the day, where I think I can sleep for hours but only nap for for 30 minutes and wake up still feeling exhausted. I hope you finally slept last night and feel better today. Sandi K.

Hi again! I'm sorry, I don't know anything about lupus. Good luck with your meeting tomorrow, I hope it goes well and you get the answers you need. Sandi K. Xoxox