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Hello, Thanks Gill, it worked! David

Thanks Gill, I remeber you mentioning in the past this being a problem with your friends and how it bothered you. I'm not quite sure what to try next. I was unable to open your link but would be interested. Can you email it to me please? It could be my firewall at work. Thanks. David

Hello all: I would like to hear from someone who can come up with an analogy of what a day in the life of an SAH person is like when you are having a bad day. I say this because I can just not get through to my sister, several co-workers and some good friends exactly what it's like to have an SAH and have a bad day. I don't care about what other people in my life think about my condition but I would like to give an analogy to the people who are close to me so they can understand becasue they are just not getting it. I've given these people the SAH brochure already and said just read the "Recovery " part and that didnt work. So some examples I've heard on here before of a day with an SAH is like it's a 500 day hangover, flu, getting hit in the head with a baseball bat, brain hemorraghe, fatigue etc. I've used all those analogies and they dont get it.I'm sorry but it is important to me that those VERY close to me(sister, boss, good friends) know that my life is a daily nightmare and I work with it and I'm not just laying around becasue I'm "tired" or lazy. I think personally the flu is a good one. 580 day flu???You feel achy, fatigued, nauseous and dont want to get out of bed. Most "normal" people stay home in bed with the flu right? Us SAH'ers carry on as if a normal day. I don't expect them to totally "get it" but their current level of understanding is unacceptable and frustrating to me. Please help. David

Hi All: I had an "unscheduled" duvet evening last night. Had dinner and laid down at 6PM. Woke up at 10pm. The couldnt sleep so showered and up til 1AM. But it did help. Work was busy and irritating yesterday. My get up and go got up and went. Wem- Keep plugging, it will get better SL- Hope you find as much time under the duvet as you need tomorrow Dawn- I agree whole heartedly. Wife does cooking and cleaning. I used to do 50/50 but cant now. She understands. I dont visit with friends at all, just no energy for that. Dont miss it at the mo. Sandi- Glad I'm not the only one who get two day hangover. It is just so debilitating sometimes GG- Pacing is a learned thing, but it seems we can do a great job of pacing and then something unexpected kicks us in the teeth and wipes it out doesnt it? Mary- Have to try the water thing. Have NO social life. Dinner with wife once a week. Im ok with it for now. I would like to have a "driveway" beer this summer. But when you have a 24/7 headache the beer makes it worse and it's just not enjoyable. I do have neighbors that chill and I WILL join them this year even if it hurts. Hoping to plant veggie garden this year. Done it for 10 years. Not last year cause SAH. May pay someone this year or do small one. It is one of the things I miss. Be well all, David

Hi Wem, I think pacing is truly something we get better at over time. It used to drive me nuts that I would have a good day and then a bad one. I tried to figure it out and it was a waste. just this weekend I way overdit it Saturday and paid dearly on Sunday and even today. Does anyone find sometimes the second day is worse? Anyways Wem, you will find what works for you by trial and error. Do what you can on the good days but rest and do nothing on the bad days. Pushing thru the bad days will only set you back. Trust me, I have made that mistake. I know many have said not to feel bad that you have "wasted" a day. I don't feel bad but I know many others think you've wasted a day if you sleep til noon. My father told me that for 40 years. Hope you feel better Wem. Take care. David

Hello, Shaw at 9 months it is still early in recovery. It may not seem like it but it is. You will get better. Glad to see you are trying to rid of some of the bad habits, but do what makes you happy. . I still need my chocolate high occasionally. Its called survival. I am at 19 months and still struggling physically. Brain is doing ok though. Karen- Thank you for protecting the safety of our members. If you need a real life example, I can give you one. Last December I went off my anti-d's because I thought they weren't helping me. I was fine for a few days but after a week i starting getting brain "zaps". Google it. After two weeks I got very sick and my BP dropped to 79/38. Was very sick and had to go to hospital. I know not smart to go off it but didnt think it'd kill me. It almost did. So it is important and thanks Karen for advising. David

Hello all: Thanks to all for responding. It was great to hear from everyone. When I said that everyone knew the spoon theory at BTG it was said as a joke. A little sarcasm. Of course not everybody knows what the spoon theory is. I was hoping to encourage conversation. Many joined in it. I, myself must spend every MINUTE of my day conserving, managing and being aware of my energy (spoons) or I would not survive the day without being severly affected. I cant afford not to. I specifically wanted to hear different perspectives from my friends Sandy, Michelle, Sarah Lou and any others who are in different situations than myself schedule wise. I know SL has to walk. I know Michele has a sick child. I know Sandi volunteers and is otherwise active. I was interested in how fatigue affects their daily lives as well. Also, those who work, do you have any spoons left at the end of the day. Michele I hope you were not offended by me using the word work as I was concerned for you as well as to how you get along with a sick child, house, volunteering and being an SAH survivor. I think it was useful, and I don't remeber there ever being a specific post about it before. Now I need some extra spoons (energy) to get thru today and will be happy to share with others when I have a surplus! David

Hello, Thanks for adding Jimmy C! I thought EVERYONE knew about spoons on BTG. My bad. I didn't know so I googled and read up on it. I think any item could be used as spoons it just what they chose. It is so true though. I'm minus many today, have to hit up Keith's shelf! David

Hello all: I know most of us are familiar with the Spoon Theory as it relates to SAH and wanted to do a one day trial to see how it affects any one of us Daily and our count. Anyone is willing to share whether you work, are a parent, both or a SAH survivor. I would use a typical day if possible and go from there. I realize all days are not typical. I woud say you have 12 spoons for the day which is what I read in the article and think is probably a good start. So how many spoons do you use? This is my typical work day and spoon use: 7AM- Get up and get ready for work. Shave, shower brush teeth -3 SPOOONS -Could honestly be more as just getting out of bed with an SAH is not feeling well tired etc.. 7:30AM Drive to work. I dont live far, do have to concentrate but not gonna count any. Others with a longer trip or bus, taxi, walking I'm sure takes more spoons 8AM-12AM Work -6 Spoons 12-1PM Lunch- Yay get some food energy, rest a little +2 SPOONS 1PM-5PM- Work- 6 Spoons 5PM-7PM Drive home, grocery store or errands, cook dinner -3 SPOONS 7PM-11PM. Rest, watch TV, try and spend time with wife + 2 SPOONS 11PM-7AM Sleep. Supposed to be recharging right? I get to sleep but cant always stay that way. Often have weird dreams, have to use bathroom. generally nver feel rested waking up - 3 SPOONS By my count, I used 17 spoons when I had 12 for the day to use. I'm down 5. Not good. How do we continue to operate at a spoon deficit and expect to recover? If I had a million dollars, I'd have the answer. How may spoons did you use today? David

Hello all: Thanks for responding. I'm with you all. I would like to go to a part time status but that would cost me my health insurance and then not be able to have doctor's care. But I'm not ruling out anything at this point. I've lost 20% of my brain and 50% of my strength. I think we should be able to work part time and be paid part time disability by the government but it doenst seem to work that way. Working with a 585 day hangover is not real fun though. Rested over the weekend but still dont feel at that well today. Teech your PT teach plan and PT trainer plan sounds good. Mary- I've been working since I was 13 also. Already have credits for disability. Disability pay is just above the poverty level so that's not really a great goal. Why cant they pay us full time pay if we've worked 35 years??? Teech-I have heard many people say on BTG that they only get headaches when they do too much or use their brain too much. Makes sense but working 40 hours is using your brain plenty. i don;t know that there is a magical cure it more of a managment issue Sandi- Thanks for the support, you understand I know. a 47 hour week was relatively easy pre SAH but now it can set us back 2-3 weeks. GG- If go to part time, I'll have more time to visit Scotland. But I cant buy any Spiced. Thats no good. Legs are screaming in pain today, a 10. They have been better, just having a bad day. Thanks to all, David

Hi Daffy D, Sorry you had a rough go but you made it through strong as you always do. You are doing great and organizing this coffee thing is huge for an SAH'er. I don't have a shunt so I cant imagine the anxiety but I do have daily pain that is concerning. I swtiched meds a couple of weeks ago and starting getting terrible shooting pains in my head. Like 10 SAH type pains. They would last for about 30 seconds and go away. They are scary though. I try and look at the big picture and am confident that I am going to be ok in the long run. Thats about all we can do. Hope that helps DD David

Hello all Back to Workers, This week has been pure torture. By the end of today I will have worked 47 hours including three 10 hour days in a row due to a co=workers family illness. Not sure how I do it. Yesterday as I left felt like my brain was going to explode, not to mention sheer utter complete exhaustion. Like running a marathon. It is amazing what the human body can take. I was just feeling good Tuesday as I felt I had conquered the 40 hour plateau with some reserves. Then this hite me. Can we not get a break? I like my job and feel fortunate to have one in this economy. Not really going anywhere. But this hit me like a truck. I normally go to poker on Sat afternoon but that is a Nooooo. Will need to rest all weekend. I had inquired last week about any possible reduction in hours and it was met with "This is a full time job". In other words, shut up and get back to work. In the good old USA, we have no legal protection in these circumstances. But I think I will make it anyways. Going home for lunch to rest my head. Hope all others are doing well. Any words of encouragement would be much appreciated. David

Hello, Glad to hear she is doing better. As much up and around as possible may help. I still have jaw ache 18 months later, usually when stressed or tired. Always think I'm having a fit but it goes away. Best to you and Mum, David

Hey Dano, This site is certainly invaluable for many things that the docs may not mention .Just to chime in on the back thing. My neurosurgeon told me that the bleed in my brain would travel down my spinal column and slowly dissapate (sp) over the course of 2-3 months. He did say to be careful with any movements or activity with back and to watch for leg pain. I had some back pain after SAH probably due to being in a hospital bed for 2 weeks and also the blood in the spine. Please take it easy and BTW the doc did say no bungee jumping ok? Take care, David

Hello all BTG'ers I did this thread about a year ago and we have many new members who we would love to hear from. The thread is titled 3 Things We Miss since our SAH, or 3 that we don't. My answers are MUCH different then they were a year ago. Last year I said exercise, drinking, and of course forgot the other one... memory perhaps lol. Today I would say: 3 Things I Miss Cooking: I don't have the energy and can't stand for that long. I'll eat anything, don't care. I used to LOVE to cook and i think it will come back. Keith? Help? Freedom: The ability to get up amd go wherever I want when I want. Used to be able to up and go away for a weekend. Now everything takes so much planning dadgummit. Immortality- Used to think I was young and would live forever. But it has taught me to focus on the things that are important. Won't miss: Yardwork- I didn't mine gardening, but the snow shoveling and lawn mowing can go. Dishes- Goes with housework Long work days- The 12 hour days at work I can do with out now. Win's singing- just a joke pal, that is the BEST thing some days Anyone else care to comment? David

Hi Dan, Nice to meet you and welcome to the site. I guess lucky is a relative term eh. Lucky to me would be living to be 90 with no health issues and a great family. But I suppose with your SAH, you have been somewhat lucky and had a good outcome. The aftercare in the US is rather minimal. My doc said, you survived, you're going be great, move on. Not exactly. The most common symptoms are headaches, fatigue, nausea and short term memory loss. I would suspect that you may have minor cases of each. Fatigue is the most common and most debilitating. They may keep you out of flying for a while but think you'll be back. It sounds like your immediate recovery from the SAH has been well. Like Kris said I think that bodes well for the future. Being in shape helps too. I'm a fat moo so maybe that's why I didnt recover well. Although my brain surgeon said that had nothing to do with my recovery. It seems like we don't hear much from those "fully" recovered because I don't think there are many and those that are move on. I don't fault them for that. This is an SAH support group and if you don't have symptoms of SAH why would you come. I myself have made many friends here and if I ever did "fully" recover I would still come back and support those who supported me when I was down. I'm sure a positive attitude will help and you seem to have that. As far as glass half full goes, my glass isn't half full. It's overflowing with positivity. The water just keeps overflowing the glass. I work full time, manage a home, a family, offer support at this site, volunteer at the homeless shelter and take care of an elderly friend. So a full life can be had but it doesnt guarantee a full recovery. You seem to be doing great at this point. Drink lots of water (Sarah Lou said so) cause brain needs it. Rest when you're body tells you too, visit here often and you'll be flying in no time! Pleased to meet you. David

Hi Scarlett, Been reading this thread as well. I hope you get your angio soon. I have never had a lumbar but have heard good and bad things. They wanted to give me one on December but I refused because I was having brain zaps that I knew were due to anti-d withdrawal. They later confirnmed that. CT showed negative. I do know that a lumbar puncture can detect a bleed that a CT scan may miss. If the lumbar is clear you can be 99% sure that all is ok. You may want to do that for your own peace of mind. But certainly go on with the angio as well. But with what Penny said, please try and relax because getting all worked up can increase BP and is not good regardless of circumstance. I know it is hard but try and relax, be positive and have your doctor get you some pain or anxiety meds that reduce your current stress level. I hope it works out for the best. David

Hello, Yes those crazy days in bed. I am a real party animal. I had a pretty good week last week, worked all week, wife was in California and I got up and made it to work every day. Saturday I felt ok and did chores. Sat night went to poker and was a little late and went to bed at 2am. Woke up Sunday at noon and sure hit the wall. I had brekkie and got back in bed to watch TV. Around 2 I woke myself up snoring and thought what huh? So I turned over on my side and woke up ant it was 6pm. Does anyone else have this where they sleep all day? I dont do it much anymore but used to in early days of SAH. Had dinner and back to bed. Feel bad because wasted a day. However,if I don't rest up, there ain't gonna be more days. Wife was gone all week on holiday. Guess how many meals I cooked?? NONE. Ate out every meal. I just can't cook anymore. I cant be on my feet for that long. Sad becasue I love to cook. Eating seems to be a function now and not for enjoyment. Maybe some day. David

Hi Shellie, I'm probably the wrong one to ask, but they say things do get better. I work full time and can understand the noon naps. I do seem to seek the chocolate high also. I get by on support from family and friends the good folks here at BTG. I know some have recovered better than others. At 18 months, I have headaches everyday, nausea, fatigue and dizziness. Therapy may help but I think only someone with experience with brain injuries. I know it helps me to read here that I am not alone in how I feel and others understand. That and a roof are about all I got to hang my hat on now. Hope you are doing better. David

Hi Kel, We had the same problem at my work. Very bright. One of my co-workers has migraines and she asked for them to remove some of the overhead bulbs. They did and it is so much better. Not sure of that applies to you but worth a try if possible. David

Hello all: I attended a live SAH meeting two weeks ago and wanted to share some info from it. It is a nice group of people and nurses. It was in Ann Arbor and meets every two months. We missed our BTG Kris as she has moved. Missed you Kris. The speaker was the local neurosurgeon at the hospital. He came in and just said he would like to answer any questions that we had. That was nice. Not many people asked so I stepped in and asked a few. One person asked about recovery and he said about 4-6 weeks. He apparently was referring to some kind of open head injury that he treats. For SAH, he said 3-6 months. I asked about any correlation to leg pain and he said no. One person asked about lifting and he said there should be no restrictions. I'm not sure I agree with him on that. My doctors told me to be careful lifting and not over 20 lbs. Anyone else heard different? Last but not least, I asked him if there were any studies shown to be that an SAH would shorten the length of your life. I wanted to know badly. Everyone said yeah yeah, what about that? So he said there should be no reason that us SAH'ers shouldn't live a long happy life and it should not cause any future complications or shorten our life in any way. I'm gathering this is his professional opinion but I'll take it for now. All I know is it was a 14 hour day between work and the meeting and it took me about two weeks to recover. Thanks, David

Dawn, I could have just copied your post and wrote it on Nov .29th and Dec 26th last year. I fee like we live the same life only in paralell countries. I hope you are doing better today. I had 4 days off for Tgiving and 4 days off for Christmas in 2012. I though that rest would do magic for me. I did nothing for 4 days but rest. It didnt work. I felt worse on the Monday when I went back to work and was so angry. Wanted to give up recovering. But we can't ever give up. Which brings me to the question for you Dawn and Mary and any other BTG'er. If a weeks rest doesnt help you feel better to go back to work then what will? You are doing great Dawn, with your back to work and eating well. I hope this is just a smaill blip for you. Certainly come here if you need to talk. We understand. David

Hello all: Sorry to say we didn't make it. My heart said yes but my head said no. Feel bad. But wife worked all day Saturday doing hair and she was tired too. When working all week, running errands Saturday, Sunday is my ONE day of rest. And I can't afford to give it up right now. It is the dreaded fear of "fatigue hangover" as Lin said that I think would have done me in. I didnt feel all that well today anyway in Day 9 of cold. It would have needed better planning with perhaps a Monday off. If I went, I truly would have needed and USED a wheelchair cause it is much getting around. But that fatigue hangover can often last days or even weeks right? It would have been a large mountain to climb. It's ok, I may have to settle for shorter and smaller events for now as this would have just been impossible. Thanks to all who responded, there were great suggestions and I will use them in the future. Gnite, David

Hello all: Wanted to share a little something with BTG'ers as many have dogs and are dog lovers. Our annual Detroit AKC Club dog show is Sunday. My wife and I have gone almost every year for the last ten. We didnt go last year due to my SAH recovery. I don't really feel much better a year later. It used to be our thing. We would go, see our favorite Shetland Sheepdogs, ( and others) and watch the show and events. they have herding, police tracking and other exhibits. They have collies that herd ducks and really cool! We would also meet breeders and be looking to make contacts. Have a nice dinner afterwards downtown. But the enormity of it all just would exhaust me I think. You have to park and walk a long way to the Centre. It is alot of walking and standing. It tired me out when healthy. I would like to go but not even sure if wife wants me to risk it. If I insisted I was ok to go, she would probably go. I'd be lying though. But I hate to deny her this joy after all she does for me. I know if I go, it wouldn't kill me but I do have to work Monday. There's no real way to pop in and out as i said parking is far and it is a big Convention Center. Heart says yes but mind says no. I know there will be other ones but we can't take time for granted now can we? I know you guys will understand. How do you plan for two days from now when you don't know how you'll feel? Any suggestions? I'm leaning towards suprising wife and seeing if we can for a short jaunt. She may say we're even crazy to try. We'll see. Penny- Can I borrow your wheelchair? haha Thanks, David

Wem, What I read was you said you were a working alcoholic with an active social life! Joke! Thats what I used to be. Now I'm just a workaholic with no social life and no alcohol. So fun am I. We knew what you meant Wem. my little brain forgot to mention that lately occasionally I get a head pain of TEN and it scares the days out of me. It last for about 30 seconds and feels sort of like SAH. I get that "here we go again" feeling and think should I go to ER or what. But it usually goes away. think its a medication change or stress. Sitting here with an 8 headache at 9am at work is not making me feel hopeful. But last time I tried to wean off the pain meds my BP shot up to 240/170 and I almost died. Headaches can cause high BP which can cause stroke. So it's nothing to play around with. Teech- I sometimes feel like we are athletes that have to take a pain shot to play. There are some athletes that are in so much pain and they take injections so they can play in the game. That is their job. Their livelihood. It's not pretty but sometimes a matter of survival. So consider us highly functional athletes Teech! You are doing great with the fitness, I cant walk to the corner due to fatigue. Maybe Botox will work. My neurosurgeon said steroids would help but he "wouldnt recommend it". I'll go with brain surgeon on this one. Thanks for the update and feedback from all. Back to the game, David