Sandi K

Welcome Jane and Patsy! Jane, it's taken me several months to realize that my journey to wellness was going to take longer than I expected and only recently have I figured out that I really have no control over how long it takes. The brain does as it needs to and that's that! To help it along we can nourish it with lots of water, good healthy food, rest, and positive thoughts. Sandi K. Xoxox

Hi Vicki, if you go more often I wonder if the novelty will wear off and people will stop asking? I go to our local shops and the hairdresser and out of politeness some people still ask but its been 20 months now and they aren't expecting to have a conversation about it. All they want to hear is that I'm fine and coping. Like any topic people get bored and they are into something else. Then there is the flip side. You look great and people see you often and forget anything happened and wonder why you are acting so strange on an 'off' day! Then I do what Mary does and tell them I had a brain hemorrhage. It's funny how some people forget or think you are 'over it'. They just don't understand and lucky for them. Louise's suggestion of counseling is a good one. They give you help knowing what to do in these awkward situations that make us feel uncomfortable and anxious. Sandi K.

David, happy Anni-versary. Well done on the poem. I like Sami's advice on reflecting on how far you've come since SAH instead of comparing yourself to before. Its hard to do that but so important so you acknowledge all your efforts. Sandi K. Xoxox

Vivien, thank you for sharing this with us. You've come a long way in that time and made some big changes. I remember once you writing about the camera being a prop to hide behind when things became a bit overwhelming in situations. I've taken your advice and used it at family gatherings and other large social situations. It works very well! Congratulations on far you've come in your journey. Sandi K. Xoxox

Hi and welcome to BTG! I get this often. I will describe what I'm trying to say and others will fill it in for me. It's surprising how well this works, even with those that don't know about my brain injury. If for example I want to say 'granite' but the word escapes me I will say 'what's that other type of countertop, not marble, not tile, not laminate....' and someone will jump in with 'granite'. With my husband and friends and family who do know about my brain I will purposely insert goofy words and we have a laugh. Last night I was wanting to say 'sweet potato fries' and the sweet potato was blank. So out came 'nuclear fries'. I have no idea why 'nuclear' but there it was. I knew it wasn't right but also knew it would be funny. We will call them that forever now! Hahah! Sandi K.

Hi Kerry, congratulations on the weight loss. I wonder if the change in dosage of meds will effect your weight loss. I began scaling back my anti-epilepsy / ain't-migraine meds a couple of weeks ago too. I haven't noticed weight change and I haven't had a seizure but I have been really 'spaced out' and lethargic at times but super alert at other times. Will be glad when I'm completely off and can see what I'm left with. Good luck with both your weight loss and medication changes. Sandi K.

Hi Donna, I'm at 20 months post-SAH and I get dizzy when I've overdone it. Crowded noises places like restaurants bring it on for me. Trying to concentrate on the conversation at the table and filter out the noise around me takes a lot of my available energy. When I get up from the table I wobble as I walk and have to hold someone's arm or railings so I'm sure people assume I've have too much to drink. Sandi K.

Vivien, that's what happens to me. A quiet uneventful day that is evenly paced means a good night's sleep. A busy day with exciting or extraordinary events means time will be required for my brain to slow down before sleep. Sandi K.

I was in a stressful meeting at work. Everyone was composed and polite but I was having to defend my tean and decisions we made so was on the 'hotseat'. The meeting went well and in my favor and as it was wrapping up my head blew as if the pressure just couldn't be held any longer. Sandi K.

Mike and Bill, it was recently said to me 'it is always darkest before the dawn'. I'm sure you've heard that before. I had never paid attention to it until it was spoken directly to me as if it were a message just for me at that time. I grabbed hold and believed I was at the darkest place and ever since I've been heading toward dawn. I hope you both are now heading toward dawn. It seems to be a long road but we will get there. Sandi K. Xoxoxoox

Oh there is so much I want to say, I only hope I'll remember it all! Love to see so much contribution here, we all need support. Going back to work is such a major achievement post SAH. Cath, how lovely of your co-workers to welcome you back so kindly. I found the same kind of slight awkwardness where people weren't sure how much to say or do etc. I found that I was just as unsure as them about myself. I wasn't sure how much I could take on. I wasn't sure of myself when I was in conversation about how I was feeling. I was putting on a brave face for my team in most cases and saying all was fine. I think things settled down and became less awkward when I began opening up. When my words started to match my body language we all became more comfortable about it. Somedays I could honestly say 'I feel really great today!' but others days I would say stuff like 'that meeting was too long for me and now I have double vision and my legs aren't working'. It was really hard for me to admit when something was too much but it helped to ensure trust with my colleagues and team and took the awkwardness away. Sarah, congratulations! Wow, lots of hurdles to go throu for job #3. I'll bet you have amazing organizational skills, your managing of the household, taxiing the kids around, and scheduling three jobs is brilliant. How did you get to the point where you can quickly repriortize and change the p,an as needed without sending your head into the land of symptoms? Changes are getting easier for me but I still like things planned and scheduled ahead of time with no surprises. Mary and David, thank you for your kind words and all your support here. David, I keep a journal too. I started it for my doctor but found no one else but me reads it. I keep going because I keep track of my symptoms and progress and dates. You are doing so well, look at how great last week went and it was a crazy week with your website down. Imagine that same week happening a month ago.... You are progressing David. If only there were never any backslides! If we all kept going forward all the time it would be so much easier but for every good day or two there can also be a bad day. It sounds like you are beginning to see some good days though and that is really really great news. Mary, you are one of the hardest workers here. You just keep going regardless of anything. If there is a wall up you just knock it down!! If we have to live with these extra challenges I guess it's important to me to understand exactly what I'm living with. That's why I keep asking 'why'. Where was the bleed, what kind of damage, what happens now, does the neuro have a clue, does the GP really understand, etc. I have the utmost respect for our medical professionals but when it comes to living with SAH I believe we are the experts and the docs can only help with one symptom at a time. We 'get' the picture as a whole. Macca, I hope you are resting this weekend. Please tell us how you are doing. How long before your next tests? You are so positive for everyone here. Know that you can vent too. GG, your advice is so valuable. You rembember your experience so well and we are all benefitting from your words. I'm stil going through the list of volunteer opportunities, I've narrowed down to 5 or 6. Good luck with next week/shifts everyone! Onward and upward! Sandi K. Xoxoox

I would love to hear more opinions, I really wish we were able to access iplayer. My hopes were up on this one. Bummer about them not spending much time on living life after an SAH, that's really what I thought it would be about and I was so looking forward to seeing it. Sandi K. Xoxoxo

Hello everyone! Had a great session with my rehab therapist this week. I've been given the ok to look at volunteer opportunities. By volunteering a short time each week we are hoping it will help build my stamina and help us determine what my limitations are in a work environment. We know what some things are, like I can't function for long in an environment where everyone talks at the same time (think desks pushed up together and many people on the phone). But we are still figuring out things like concentration and ability to switch focus and so on. Volunteering will also give me a sense of reward, something I miss from working. I like doing a job well and working in a team and I miss that. Next steps are to pick a few from hundreds of opportunities and my rehab therapist will help me with the choosing process. Would love to see some updates from everyone else on how it's going for them. Cath, this is your first week back to work, I'm thinking of you and wish you well. Pacing is what everyone talks about. I'm still learning how to pace! Setting priorities is a big one. What is important to you, what do you need to do, what do you want to do, and what can wait until later so you can rest now. Take mini-breaks several times a day. It's so important to give your brain a break. Sometimes a walk, sometimes just a stretch and closing the eyes along with a deep breath. And of course, drink lots of water! Sandi K. Xoxoox

Hi Michelle, thank you for posting about your 4 year mark. You've had some very difficult and emotional struggles and your life has changed enormously. You've been so generous with sharing your experiences with all of us and it's helped so much. For me, you were right there almost everyday when I was having my hardest time trying to be back at work being the person I used to be. I would come home in tears of exhaustion and hurting all over and feeling like a huge failure and so depressed and there you would be, a bright shining light sending me messages of encouragement and helping me to see (really 'see') what was happening. You helped me understand through tears and laughter that I needed to change something. You helped me face one of the most difficult decisions in my life and admit that I was still sick. You helped me understand that I'm not a failure. I will always be grateful for your messages from Scotland. I can't say it enough, thank you dear Michelle. Sandi K. Xoxoxo

Hi Nic! Welcome to the BTG family! Ask as many questions as you like, someone here has been through it. It's such a relief for all of us to have this place to 'meet'. Sandi K.

Teechur, I agree with you. It's a relief when someone says to me 'you don't look so great' ! Sounds weird but honestly, when I don't feel well I don't have the energy to explain that I'm not up for something and why. It's just so much easier when someone recognizes that and acknowledges it. Sandi K.

Hello everyone thought it was time for an update on rehab therapy and a check in with others. Macca, how is your week going? I hope you aren't so knackered that your entire weekend is spent resting up for Monday. I know that can be reality though. David and Mary, do the heat and humidity in your area effect your energy levels and work week? Dawn, you posted on another thread that Headway has suggested you take another year off. We are all different in our rates of recovery and remember that some people do recover quickly and we have some members here who have successfully phased back into work early on. I do wish though that I listened and heard when anyone may have said I could be off work for a year or 2. I'm sure people at BTG told me that, I think I had an Occ Health rep who said it. I flatly denied it and refused to consider it. We all have to do things in our own way in our own time. In the end they were all right. You are in a situation where you have advice suggesting you take another year off but only have a few weeks left of sick time. it's hard and you have to do what's right for your health. I can imagine this is a tough time. I managed 2 hours of rehab brain puzzles on my own yesterday. Not 2 hours straight. My rehab therapist has suggested I try something new. I can only focus and concentrate for 10 minutes before the weirdo symptoms start creeping in. The first sign is always thirst, followed by 'tight head', then headache, then sore legs, blurry vision, and losing my voice in that order. When I stop concentrating the symptoms begin to fade. I'm doing harder puzzles now but I work for 10-15 minutes and then I pull away. I go do something else like put in a load of laundry or move the sprinkler outside. Then I come back and do 10 minutes more and so on. It's amazing how well this works! Puzzles that 'stump' me and I just cannot figure out are suddenly easy when I come back. We are hoping to extend the amount of time I can concentrate, just like physical exercise on a treadmill. You begin with a few minutes and build up. My rehab therapist says social situations are always easier because I can disengage from conversations when my symptoms are coming on, even when I don't know I'm doing it. It's easier to pull in and out of conversations. But she also said that any type of concentrating will bring on the symptoms. I've really paid attention to this. When I was with my GP explaining stuff it happened because I was focused and concentrating. When Peter and I are sorting out travel itineraries it happens. Now that I'm becoming aware of it I'm hoping to figure out how to get better at preventing full on symptoms. I don't know if it's possible to eliminate them but this will hopefully help to lessen how often they come. Onward and upward. Sandi K.

Win, my eyes started twitching 10 years before my SAH. I have wondered though if it is related, was it a sign that something was wrong. It's very subtle, I can feel it happening and if I'm quick enough to look in the mirror before it stops I can see it but people don't notice it. It feels like its my whole eye! Can be either one. But it's not, it's just the skin underneath or ontop and just a tiny bit of it twitching about. Doesn't seem to have anything to do with stress, just happens whenever. Sandi K.

Mary, I've done that same thing, tried to figure out how to turn the music down so I can hear people talking on TV but the music is part of the TV show. My hearing has become more sensitive like Dawn's. I carry earplugs with me always. Last night and tonight I can hear a loud intermittent gushing noise like a huge amount of water from a hose that is going off and on but I know it's a few houses away and I can't figure out which direction it's coming from. It's annoying me but Peter doesn't even notice it. This kind of stuff has been happening since my SAH. Bionic hearing! I often feel like I'm being 'assualted' with noise. Loud restaurants or even a loud TV feels offensive to me. I guess it's because I know it's either going to hurt (headache) or bring on the weirdo fatigue symptoms. Sandi K.

Hi Lizzy, there is something about the possibility of epileptic seizures for awhile shortly after SAH. I don't know too much about it but it was written in my discharge report that there was a risk of this occurring. I've been taking an anti-migraine medication which is also an anti-seizure medication so I haven't experienced any fits. It must have been scary for you and I'm sure you lots of questions. I hope you are feeling ok now. Sandi K.

David I wonder how your week would have ended had the colleague come into work. Wouldn't it be wonderful if you were able to have a whole week that was good. Maybe you are getting closer to that reality. You are doing amazingly well! Sandi K.

Aw Michelle, It's sad to see you sad. Hugs. It's an awful feeling to be left out. To know that everyone is having fun and you aren't and it can feel lonely. Once you have your driving license back (hopefully not too long now) you will have more freedom again. Would it be easier to attend these events if you were driving? Then you could escape when you've had enough. Sandi K. Xoxoox

congratulations Jan! Happy Anni-versary! Sounds like you are keeping busy with grandkids and puppy, good for you. Sandi K. xoxoxo

Teechur, I take topomax and find it to be quite effective. It took at least 3 weeks to kick in and during that 3 weeks I was very irritable and cranky. After that my constant headache eased up. I've been taking it for about a year now and am just about to drop to half my dosage (per the doctor) to see if the headache comes back. Good luck, I hope it works for you. Sandi K.

I do think it's more frustrating when we are told we will be fine in a few short weeks and then we're not. The same thing happened to me. It was never clearly laid out but after asking questions and through different medical people I was told not to drive for 4 weeks, no swimming or hot baths during that time, and no weight lifting for a year. When I said I still felt weird after a month I was told by the neurosurgeon to take another 2 weeks off. So that would be 6 weeks off work. As a result I assumed I should be fine and couldn't figure out why I still felt the way I did. I made bad decisions for my health based on the direction given by the 'expert'. Returning to work that early was the worst thing I could have done and I can't help but think it hurt my recovery. The next 'expert', a neurologist told me at 3 months that what I was feeling was normal and to expect to feel that way for 6 months. So that's what I did. I expected to feel that way for 6 months. And then I went back to work too early again. How about this for an idea: how about suggesting that come back and see you in 6 months for a check up first? How about suggesting I get some rehab? How about giving me the full picture instead of just the rosy side which through self-determination I would be a picture of but have found you can't fix this with self-determination. I've decided the experts don't know what to tell us. They discharge us and there is no follow up so they have little or no idea what's happening to us. Through insurance at work I have rehab therapy and thank goodness!!! She knows that what I'm experiencing is normal. She tells me that all of her brain injured clients have similar issues. She puts no time limit on recovery and there are no expectations. I needed her more than the 'experts' in the early days to tell me what could happen. It's such a let down when we aren't all better when the medical professional says we will be. I've gone through anger and sadness, round and round. I really would have preferred to know the full picture and if I healed quickly I would have celebrated and said 'oh what do they know?!'. It's almost as if we've been lied too. Like a dirty trick. Set up for failure. You have every right to be angry and I would say you need to feel it. You have to express it somewhere. It's hard for people to understand it. They see us as looking like we used to look and they can't understand why we're different. You are still recovering and it is still early days for you and anything is possible. This summer is one summer in your life of possibly 100 summers. It's a good investment of time to use it doing stuff for you and your recovery. Be angry about Disneyland and the lost income but look for replacements. Things that you can be excited about, something new that you can do while recovering. Sorry for rambling on so long! Sandi K. Xoxoox