Carl

this aggravates me to no end. I am not sure of what is available to you in the UK but can Headway help? I know I feel so frustrated when I are trying to explain things to people and they are blinded by ignorance. I wish there were advocates we could call on that had some clout. I wish I had a Tshirt that said Member of Behind the Gray Subarachnoid Haemorrhage & Stroke Support Group. I would wear it like superman and change in a phone booth. Some people just need a good kick! Good Luck Sally! We are behind you 100%

No advice just words of worthless wisdom. The difference between In-laws and Outlaws Outlaws are wanted!

Fatigue was something my doc and I discussed yesterday too Sandi. Doc said to me, the fatigue from exercise is healthy fatigue. we dont want to push ourselves beyond that "Wow I felt good after my work out" once we pass that point it becomes exhaustion. I think more of us suffer from mental exhaustion than fatigue and we lump them in the same class. Tired Fatigued and exhausted. We all need to balance . Just dont over do it.

I agree that letting go can be key. I have a hard time doing that. I have yet to really see any of the scans, although I may ask my doc if he can email them to me. There was no aneursim, I imagine they dont want to commit to much about me because they don't know . I am trying to look on the brighter side of things. Even if I can't let go I can put things on the backburner and simmer. Today I decided to smile when people fail to believe there is anything wrong with me. I always laugh at clowns. Less than a year ago I was in the hospital wondering if I had a future at all. Today I know I have a future and the trick is what path I take. Boywithcap, if you feel at ease talking to your GP like I do then the GP will be one of your best allies. Be sure to write down your questions before you talk. I tend to forget too much, I also mention BehindTheGray lots. I hope the medical community recognizes us here more and more. No one knows SAH like someone with an SAH

Oh how I wish doctors would read our forum! The mind is so complex, and although professionals seem to know lots I am sure the collective experience and knowledge shared on this forum would astound them. I only saw a neurosurgeon in the hospital when they did the Cerebral Angio. He popped in to see me on the way out and said you are good to go. Minimal chances of a recurrence. So here we are, left to support each other. Well I couldn't have chosen a better group of people to turn to for support. Most of the symptoms we share are hidden invisible ones but they are still there. I think we all have to continue to ask questions, to educate our support professionals and to support each other. Oh and to thank our loved ones for being so tolerant of us Hang in there Boywithcap. We are all here and understand the frustration and enjoy it when others get things off their chests. It is therapy for all of us!

When I first went back to work I told my doctor I suffered from fatigue. He sent me for a cardio angiogram stress test to ensure that the blood was travelling to the correct parts of the body unimpeded. He has talked about the sleep apnea test, I have no doubt they will be exploring that tomorrow when I see him. My doctor explained to me that the brain needs to process things in a different way than it did before the SAH. This is what is causing my fatigue. The analogy of a road that is closed and diverts all traffic on an alternate route that is already running at its normal capacity seems to sum up why the fatigue kicks in. Try it in a car and see if you get more stressed and tired going that route. I wish there was a window into our minds so others could see the long and arduous journey we travel every day.

Thank you. I know it is head games they are playing and they do not believe me. I asked the union to represent me, which actually meant they were in the room while I did all the talking. One of the things I was grieving was the fact I got a disciplinary letter that transferred me to another postition on a temporary basis till they could evaluate me and my behaviour changed. Well it has been 6 months and I requested reviews and some timeline to the transfer. The response was an alltime low as far as I am concerned. I was told by the superintendent that they dont have to give me a time line and they dont have to give me a review. I felt like I was dealing with children. LOL it is becoming a joke. I guess it cost lots of money to say to an employee "you are doing well" or "you need to pull up your socks" I see the doctor tomorrow, I will see what his response will be. There are other courses of action, like early retirement and find another job. Or even civil action but I am not sure if I am up for that battle. In the mean time I will hold my head high knowing I am not lazy or crazy.

I know fatigue is taking care of a large portion of our lives. Last night I maybe got 30 minutes sleep. I was fretting about work and had a bit of a headache. I got up at 430, even before the alarm went off and made lunches. Took my pills, fed the cat, made coffee and had breakfast. I arrived at work about and hour and twenty minutes before my shift. I was sent out to do something new this week which is a nice change. I took advantage of my lunch break and had a 20 minute cat nap. My partner mentioned how slow and doggy I was today. At the end of the day I stopped in to see the shop steward to see the results of my meeting I had from 2 weeks ago. I am not sure if you remember but my doctor had requested a midweek break and I had ample sick time banked away. Over 830 hours banked. Once again I was denied. This time was a simple verbal denial. Being tired or fatigued is not just cause for sick time. I am so frustrated I could scream, at the same time I am so weary I dont have the strength to do it. I almost feel like shutting down. The union will follow up with a letter to the managers but if they dont recognize a doctors letter why would they recognize the union. I do see the doctor again on Thursday. It has been about 6 weeks since I submitted my letter. I saw the doc about a month ago but he has been on holidays for a few weeks. I will talk to him, see if he has any other ideas. It is frustrating since I was in such a hurry to go back to work. I worked full time from two months after the SAH, I have had no neuro specialist or therapists or any follow up other than a treadmill test for fatigue about a month or two after I went back to work. I did have a week off on vacation and visited our daughter, that was wonderful. I have more holidays I can take too so that may be an alternative. I could use a beer Maybe I will have a bottle with supper tonight. Then an early night It couldnt hurt.

That is good news David. I like the idea of the split mid week. Even the half day Friday isnt too bad. I went back to work full time 2 months after my SAH and that was a huge mistake. I have come to the conclusion that my job is perfect, it is my bosses that are a work in progress SarahLou. I had a meeting ast Thursday, which wasnt too productive. It was step one of a grievance. I gave the employer a 5 day deadline for them to come back with some alternative. That is standard with our union. I imagine the response will be another series of questions for me to take back to my doctor. I have an appointment with the doctor on the 26th, so I don't imagine there will be much progress before May. One of the joys of SAH. always look forward to the future :

There is something to be said about crying in your Cheerios, they wont get soggy. I had a couple of good cries last night, while watching a movie about a brain injury. Funny thing is I was crying more over the frustration of the family than I was for the victim. I don't get enough cries to warrant any medication. I have been fortunate so far to only have a couple of public sessions. It would be nice to know if anyone else has tried it though.

I have been reading through the forum and noticing most of us have the same symptoms and frustrations, all with slight variations but all the same roots. We are all striving to get back to where we were, Like work and physical health. I am starting to wonder if that is the right thing to do. sometimes we try so hard we seem to stumble back. I am not saying we should give up on anything because I dont think that is healthy, but I am thinking we should strive to accept who we are and what we have become. Then we can move forward. Funny I don't have perfect vision, I wear glasses, People see me in glasses and don't even think anything of it. They accept me as a person who does not have perfect vision. The "disability" of needing glasses is invisible till the glasses are on. I realize that I am not perfect. There are days where I shut down, sometimes intellectually, sometimes physically. Those are things I deal with and have come to accept. If my SAH only came with a pair of glasses that would allow people to see that I am not perfect. I beleive the people who love me and care about me understand some of the frustrations and still accept me for who I am. This last weekend I was visiting my daughter and at the end of the day I was tired but I was looking for a magazine. My daughter was talking to her mom and she asked what I was looking for. I heard her, I didnt respond. I found the magazine, still ignoring wife and daughter I slipped away to another room. I heard them discussing the fact that I shut down and don't reply. Still I didnt reply. They accepted it and moved on. I don't mean to be rude, it is just one of the side effects. I know I need to change that behavior, not sure how to do it but it is another step on this fun journey. That is enough rambling for now, just feels good to get some stuff down on paper.

Good luck David!

I used to have a great memory. I was reading this post and thinking to myself I should write something, then I see I already did LOL. I have confirmed that stress is the biggest cause of my headaches and this morning I was enjoying the routine I go through each morning. I get up and feed the cat, make the coffee and take my pills. Then I have breakfast and make lunches for the day. This is a constant for me. It does vary on the weekends, but then there is no need to rush with anything. I find when simple plans go off the tracks I get headaches and feelings of frustration. That never used to bother me. I loved solving problems, I was also a person who juggled many projects at a time, although I seldom finished any. Now I am finding a greater satisfaction in completeing something more than starting something else. That is an SAH plus:lol:.

I cry more often than I ever did. Sometimes it is over nothing, other times it is at a commercial or in a movie. At the movies isnt so bad because the lights are out. I sobbed at the movie War Horse, and not necessarily at the points where I should cry. Last week when I was explaining things to my union president, someone I had never met before, I broke down and cried. Funny about 5 minutes prior I had mentions emotionaly liability. Breathing steady and deep does help control it. But then again I wonder why we have to control it. Our brain is telling us to cry because maybe we need to. Maybe society is making us feel awkward for crying. socially unacceptable. More so for a man. There are times where I don't want to worry about being acceptable. The weather is improving and I will be walking again. I usually walk alone and that allows me to reflect and sometimes cry when no one is around. I am starting to like the "new" me, even if I do cry now and then

This is all sinking in a little more every day. About 8 months ago I was ready to take on the world. I think I overdid things a little. Some days I wonder if it is all in my head Well thats the cause of the problems isnt it! I have to admit there are more OK days than any others. Every now and then the old Carl pops out and I feel awesome. Lately it has been a struggle. I need a gumball machine that dispenses pain killers for my headache. I used to say headaches but this one lately has been relentless. I am pretty sure it is stress related, since it came on at work after a discussion with a non favorable outcome I have a 4 day weekend, followed by 3 days of work and then a vacation. That will help. I do agree enjoy the good days as much as you can. I know that even going to a movie can be a decision. Something most people take for granted. When I do feel up to going I sure hope it is a good movie

Thank you all for your support and kind words! Today wasnt a bad day. Other than the headache, This one has been constant now for about 5 days. If it doesnt ease up I will go to the clinic. I called my docs office today but he is on holidays and I cant see him till April 26. As for the union, I may have to do the ground work and hand them a package to deliver. I talked to the president yesteday and when laying out the history of my event and treatment by the employer I asked him if he was notified about my work transfer. I normally read water meters but 5 months ago I was transfered to another job for disciplinary reasons..... long story... Maybe related to the SAH but not going to use that as an excuse. Anyway the president says the employer doesnt have to notify the union about transfers. I asked him to open up the Collective Agreement to article 4.08 and read it. when he did he replied I guess they do, I will look into it. So I think I have a better grasp of the agreement and the human rights code. I know I have a better grasp of the symptoms of ABI and SAH. I think I will just need to spell it all out, hand it over and let them deal with any confrontation. It is the confrontation that I find stressful and hard to process. It seems the closer I get to May 1 the stronger I feel. (that is the earliest date I can get my pension) I know I could get the doctor to rewrite the letter. Part of me just wants to say to the people at work." It seems no matter how simple we make this for you to understand you just dont get it, and I am the one with the brain injury!" I look forward to the 4 day long weekend and then the following week is holidays There is always a light shining behind the gray!

I am sure I could get a book published when all the dust settles Not sure if I will change the names to protect anyone LOL. I went to the union office today and had a one hour chat with the president. He got to experience first hand just what emotional liability is. We went over the events of work for the past year, and I provided him with most of the documentation he needed, letters and replies. There are three medical assessments that the employer has but he shouldnt need those. I have documented comments made by various managers, I keep a daily journal these days and it has been a treasure trove of information. Part way through our discussion the Provincial Union Rep showed up. He says there will be no problem for me to get the midweek break as the doctor requested. There are just a lot more hoops to jump through in the form of grievances. The employer has a legal duty to accommodate unless it creates undue hardship for the employer. So the wheels are in motion but I dont expect to see anything from either party till April 16. At the end of the day the employer served me with a letter confirming that being " tired" is not acceptable rationale for time off coded as sick time. But they will support me by giving me unpaid time off. I adore the generosity I could use a misquoted Churchill speech here...... We shall defend our island whatever the cost may be!

Thats not moaning around moonlite. This is the place you come for support and understanding. a place where everyone is equal. I feel that way here anyway. When I first had my SAH I used to think to myself, other people have it worse than me, trying to quantify things. Then I realized that here we all share a common thread. I find this a sanctuary where no one judges, People empathize not sympathize. It is good to get things off your chest. Feel free to share anything you like. Welcome to BTG

Well a miserable day at work today. All was well till around 2 oclock I had a meeting with the health and safety officer and the superintendent. After careful consideration, they reviewed the letter submitted by my doctor for a midweek break to recover from being over tired due to the way my brain processes the simple every day tasks. The reply from the employer is, you are tired not sick, therefore you do not qualify to use sick time, We want to co operate so you can take a leave without pay or use your holidays to get rest. Then they told me they are keeping a close eye on everyones sick time and I need to be aware of that. I replied that after 33 years and saving over 800 hours of sick time I do not take advantage of it. I turned and left the room. Head ache and raised blood pressure. good job there were no sharp sticks about! Oh well I am still alive I am not giving up. They would like me to retire next month, save them lots of money but I am stubborn. I will stick it out. I wonder if I broke a leg and was recovering, if I would be denied, since I am not sick. I may not have the brain I was born with but I didnt lose my intelligence Don't worry I am not going to break my leg

Welcome to our sanctuary Debbie. It is a great place to end up when you are cut adrift. I empathize with you. The more you read here the more you realize that you are not alone, and the sensations you are feeling are not fantoms of imagination. I know I have headaches and I do try to drink more but I have such a hard time doing that, I think I need to have an alarm go off every hour and force myself to have a glass of water. It is a bit hard when you work on the road though. If you have any questions be sure to ask them, there are no dumb questions, maybe the odd smart ass answer but no dumb questions!

Well I was on BP meds before my SAH but recently the doc switched me to a stronger dose. I take 40mg of Quinapril, There is also a need for PMS--Hydrochlorothiazide, a diruetic and I have to say that pill works very well I monitor my BP daily sometimes, when I am under the weather or stressed even more often. Just took mine now 126 over 75, if I didnt have a cold I would feel awesome LOL. The meds do not help me at all with headaches. Rest is helping. The meds do get my BP on track but they also affect my diabetes medication.... wow if I knew I was going to live so long I would have taken better care of myself!

The midweek break last week did me wonders and I felt like I had a very productive time at work when I returned. The health and safety officer wants to have a meeting with me and the superintendent some time Monday or Tuesday. Not too sure what will be said but I am sure it will raise my blood pressure. This is the same person who was going to give me a letter to take to my doctor sometime midweek last week. I thought I was the one with the concentration problems!!!!! There will be changes in duties for me in the up coming season. I have heard I will be flushing watermains through out the city. I know it will be a little more physical than I am used to so I am not sure how that will affect me as far as fatigue. I do find the closer I get to retirement the less stress I feel. It is a toss up. 36 days to a reduced pension or carry on for 522 days to get a full pension. The ideal would be to enjoy all 522 days and walk away with the max. There is no reason why I should not be able to do that, but time will tell I see the light at the end of the tunnel and that is a huge inspiration!

I shall have to rename "Hump Day" to "Wonderful Wednesday". I called in sick, early enough in the morning so I didnt have to talk to anyone.....mind you I have no idea why the boss isn't there at 5:55 am! That is the time I usually show up for work for some reason he doesn't come in till around 6:30. But my memory being the way it is, who remembers such things. I really did enjoy the day off and today I went back to work refreshed with a good outlook. We had a very productive day. If they do ask me for a note I will re submit the letter the doctor gave me. Oh touching on the same topic, the health and safety officer told me he would have a letter for me to take to my doc sometime midweek. Is Friday midweek anywhere in the world Well maybe tomorrow.

Last week I took a letter from my doc requesting a mid week break for me to rest. It took a week to get a response from human resources. Not so much a response but a meeting with the health and safety officer. He is the most passive aggressive person I have had the "pleasure" to meet in some time. " we are not denying your claim, but we wont just sign it off just so Carl can come and go as he pleases" "it isnt about the money but there are many others off right now, if we sign off on this letter it could cost us 6 weeks pay" "If there is a holiday in the week do we split your time off to half a day monday and half a day friday"....... not sure what mid week means to this man. and the kicker... I told him even though I can retire in a month, I want to continue for at least another year to maximize my pension. I enjoy my work His response.....after I have been with the company for 33 years..... Perhaps you would be happier and healthier if you worked at Home Depot three days a week. So they are writing a letter back to my doc for clear instruction. The letter will have to go through me. The doc in return will write a letter back to the employer, which in turn must go through me. Doc is on holidays for the next two weeks. They may get it all sorted out by the time I retire. In the mean time. I may have to call in sick on wednesday and see what happens. I dont think there is anything anyone can do to me that would be as bad as the SAH headache so bring it on

It is good to monitor your progress. I keep a daily journal. At first I did it to cover my but at work but now I track my headaches and fatigue. Ignorant people who have no clue say offensive things. I have had that a few times. I am also diabetic and this week I had a few lows where I got even foggier than I normally am . My co worker who also thought I was milking things, is seeing that the issues I face are real. I have always been far to passive in the workplace and I think sometimes we need to take a stand and be counted. Keep up the good work David