MaryB

Wem, When you find that exercise or the answer to your question that works let me know. I am not sure if it is that my damage was in occiptials lobes or what but I just cannot read well at all. OR read the RIGHT word OR spell a word or find the right lettters when someone is telling me how to spell something. I know for me there are exercises for that but I would have to quit my job if I had to work on that as it is that hard for me to grasp. I cannot do those word games either. I also probably throw away much mail I needed to read as well! Good luck Mary

I am not sure I can concentrate at all but I sent you a link in a pm. good luck mary:-D

I want to agree with Dawn that keeping a diary of how you feel is a great idea. I wish I had done one. You can just do one in words and add to it everyday. ALSO foudn some interesting reading on recovery that would help. Develop a routine and stick to it. Advance planning can help reduce the risk of forgetting. Create a place for everything and store everything in its place. Get Organized Utilize a Tote Bag or back pack. Plan ahead place things in the tote bag of Back pack that you will need for the day's activities. Use a to do list. Use a Journal to keep track of important plans, impressions, ideas, appointments. Use a planing calendar Use a system of reminders. Use cross references. Use highlighters, margin notes and tabs. Use repetition. Make notes and use tabs. Focus on one thing at a time. Understand that your sense of knowing might have become impaired by your head injury -- Learn to trust your instincts Live in the moment A few months after my SAH I had goen to get hair down and carried my calender and a pile of papers with me, next it was a yellow legal pad, than it was 50 post it notes ( most say the same thing!LOL) than a few post it's on my iphone as I could not recall how to use the phone calendar finally I got to the point I could just be given a card with my next appointment on it. My hairdresser pointed this out to me last month and it was nice to hear how far I had come. mb

Wade, Hope today is a better day for you. I know it must be hard on your wife as well and you feel that burden. We did not ask for this to happen, it is not our fault and we cannot hurry up a brain injury. It is not like a broken arm. I am over a year now - although working with barking animals just about kills me......at home I do what I can. I simplified my life a great deal. My real problems areas are reading, words, fatigue and memory loss, headaches are not nearly as bad anymore. But I have learned to listen to my body and do not push it too far. As hard as I try to explain my symptoms to friends and family most just cannot understand it. And you know unless you have been there/here we would not either. I am well supported but much of my true lifeline is this site and these people that make it ok to need time to heal. I just thought I could hurry it up on my own. If you asked most people here if they like their new self most would say yes, even the ones with some major handicaps. I would not change a thing as I am more enlighten, and feel more grateful as each day passes. I struggle but I am proud to look at obstacles as challenges. I see this as our cross to bear but also we are not like the only people out there struggling so I remind myself of that when I get feeling a bit cheated! I have to say it gets much better and it will take some time, no one knows how much time but it does get better. Hope you had a good day. maryb

Oh man .....cannot recall how many spoons you gave me..........let me go back and read it AGAIN ( sorry no spoons left). 12 spoons I used all my spoons by 11:00 am today at work. It was a busy crazy snowing day with employees being late and only 4 appointments that spead to 15 and most were crazy sick animals. I was ready to take something by 10:30-11:00 for head pain #5 but I just have a harder time thinking- I start looking like an idiot old woman- LOL - really. My communication & processing skills went into the river early today. I use none really prior to work. Except this morning ( and again NOW) my husband keeps talking to me?? What is up with that??? I can't talk!!!!!! He is certainly not a mind reader. Not many after work as all I will do tonight is lay on the couch and watch 5 or 6 hours of NCIS. I only had a doctor in office until noon so this afternoon I did not have the pressure of appointments but still had plently to keep me steady busy - I could not sit or rest or I would never of gotten up again,. I was sure to sit at computer for stimilation on my lunch hour as that recliner would of knocked me out and I do not think I could of made it back to work. Mary- tomorrow is my day off-

Hi Wade, Welcome, Have you told your Dr. about this? I did not return to work for 5-6 months phase back after my NASAH. I can imagine how you must be feeling! Poor thing. I am glad you found this place as it is the only place that made it ok for me to recover. There is so much they do not tell you and so much you don't understand. The fatigue and headache early on are horrible and you must rest and drink pleanty of water. We all have different areas of injury etc and recover differently as well. No one could ever imagine how much effort it took to think! I was amazed! Good luck - stay in touch. maryb

My advice is to work as little as possible until like 6 months and only increase slowly. ........because once you committ it is hard to go back. I average 34 hours a week. That is the mininmin (SP) you can work for insurance coverage. I need to work 3 mornings a week for 4-5 hours that would be max health wise. That working for insurance is sooooooooo wrong. I have been working all my life and really I have to work for my health care now??? I am hanging on the hope that we can get some other coverage in the future with Obama Care as I paid $9,500. for health insurance out of my paycheck and another $10,025 out of my pocket for deductable etc...... last year. Although if that coverage STILL ends up costing us $20,000 a year it will stink as bad as this situation does. It woud be one thing to kill yourself to have a better life stle but who on BTG cares about life style over health?? It is impossible not to have health become priority. mary b

Scarlet, Let the Doctors do their job honey and they will not let you leave if you need to have it fixed. You have to just trust in their care. Sometimes we just have to let them do their jobs as they see fit & their are so many variables that CANNOT be controlled in medicine and life. Michelle is right get it done now b4 it burst. Good luck, maryb

The pressure and weather has been researched in Fibro and it is real as most suffer during exteme changes and season change. Also working for a veterinarian we also see many dogs with their owners complaining on weather changing about their dogs limping etc.... strange but true!

Just want to add we have flurorecent (SP) lights as well at work and I swear literally at least 2 rooms are always flickering! I do not have seizures but they are trying their darnest to give me one as do celing fans!

I want to add everytime I call my neurosugeons office I am so stunned they know who I am right away because I feel what I had was such a small thing compared to what so many other people that neurosurgeons has worked on. I really am quite shocked they even spell my name correctly!!!! I do not even have to spell it when I call!

I told my therapist yesterday I think at 54 years old & I have worked since I was 13! Always having a job and doing the right thing. I think I am due & deserve to be able to volunteer 3-4 days a week with seniors or children doing something I can make a difference with and the rest of the time work on me getting well. I find it almost shameful that in this “modern society” I am force to work for my health insurance when I really could be giving back to society in many more sane and useful ways to earn my health coverage.

Daff, You have done remarkable already with your recovery, and I agree with the confidence and experiences the more you have the stronger you become. Geez……..a fund raiser- that takes talent! I have been meaning to make a new thread on therapy. I started it maybe 3-4 months ago and have gone 3 times. I am logical and very well adjusted so they say- I am in harmony most days where I am at now in my life. With that said I have bumps in the road weekly. I do not usually get to do what I want. Someday I can't get off the couch, someday shooting pains in my head. I do not fear "dying" I fear suffering. So when I go to therapy it always ends with him asking if I NEED to come back or if this even helps (I answer almost all my own questions LOL) but I do need it. I need the quite office and someone to tell me I am normal for where I am at. One thing is I thought I was becoming very OCD because I check double check triple check and still screw up or leave the burner on etc. or I can only seem to watch NCIS returns or Criminal Minds both run many episodes a day & during the evening. I really have a problem when I turn the channel, I thought I was turning in to “Rainman and Judge Wapner” but therapist told me it is easy on the mind to watch those marathons of same programs and many people with brain injuries do just that to relax. There is no real thinking involved. SO I feel better that was worth $200 for that piece of advice. This week I told him I am crashed on Wednesdays 1/2 days it just about throws me over the edge and I come home and never get off the couch from noon till bedtime and he said "That's good". I was shocked by that but you know I know my brain and body need that rest but I need someone to validate that for me once in awhile. I need that professional to tell me this IS normal to have some of these feelings. SO I am thinking therapy is a wonderful gift I have allow myself have. I need to be reminded that this is the new normal and it is ok to have certain feelings. I do not panic ( I am the opposite I never cry – I think my cryer is broken!). AS far as thinking something is going on in the brain- sometimes when I have a headache and my blood pressure gets up there I think I am going to stroke out but I now know I cannot let myself get that out of whack with being upset or anxious etc. It just does not work for me. I tend to believe in my heart what will be will be and I cannot worry about something that has not happened. I will cross that bridge when it or if it comes. Maybe meditation, age, past experiences etc…. have brought me there but I cannot waste time on things I have no control over. I have had much practice with moving forward from struggles and maybe I gain some insight from that? I do not know why I just accept this and am thankful I can walk and talk! I cannot read a book or directions (I would have to quit my job and do that full time in occupational therapy- really). Maybe I am just way too tired to spend the energy worrying? NOW, saying that I did panic a tad when Sandi went to that meeting recently and the speaker was still recovering 4 years after his mengioma surgery as I had talked myself into that if I have to cross THAT surgery bridge it will be so much, much easier and not like this SAH and Strokes recovery along with fibro and being auto immune! But again I calmed down as to not waste energy on something I cannot control. I am living in the moment and present state of being and really that is ALL my BRAIN can do. You are doing great and should be so proud of yourself. Sorry to babble but this is how I cope by just not participating in worrying. There are certainly things I wish I could change in my life like workign so darn hard. I should be able to work as a volunteer and make a difference in this world- that is what I wish I could be doing but that is not where I am right now and I accept that what I do at work is important and I am still making a difference. But my recovery suffers from not being able to be on that kinder to myself end of taking it easier. Best of luck, maryb

Good for you Chris to find this place. I hope you phase back slowly as that is often the mistake people do- is not realize how much work it is for our brains to THINK! Take it slowly and drink lots of water! I hope you continue to do well. December was not to long ago so don't push yourself to hard. Please keep in touch and let us know how you get a long! Maryb

Hi Wendy, Welcome, I BET YOU cannot tell where one begins and one ends. I was feeling poorly since 2009 with neuopathy ( from my fibro) and felt better with new meds than about 6 -9 months before my SAH and strokes I was so fatigued and so confused at times, no one has an answer to that. It is hard to have a chronic illness or is it a blessing as it prepares you for the limitations you may have after the SAH. I am fatigued daily and have a memory like a sieve! But on the bright side I can accept most days where I am at and thankful i am not worse. Come in anytime to talk, vent or whatever! This place is a GOD SEND! I started therapy several months back and only go monthly but I told my therapist today I really do not need to come here and so many others need more than I, but I need to have my health validated by you as my neurologist just looks at me with a blank face. I wish I could quit work and work more on my health- yoga, mediation, read & comphension etc..... but not when I work and collaspe every other day. This system in the USA is not set up for recovery very well and so little is known. CRUDE I thought I WAS typing in words to correct my mistakes. Sorry for your luck that you have to read them now! Once again, WELCOME!! Maryb

Well I am glad things are looking a little better as far as you seeking help elsewhere. If I look back in my life how many doctors I saw before someone helped or believed I have fibro it is embarrassing to me but it should be embarrassing to the medical community for not pointing me in the right direction. I am in therapy as well and although he does not specialize in brain trauma he has helped me with goal setting. My strengths are adapting and finding ways to do things but this fatigue is a kick in the pants. I have been on CYmbalta since 2009 when neuropathy was bad with the fibro and love it but they added Elavil at night and I wean off as I was not seeing a change. I do see a neurologist now every 6 weeks or more? Can’t recall...LOL Anyway the noise at work does me in I work a full day Monday with no dr in the afternoon and I can drag myself through that day, Wednesday a 7:30 to noon with 2 doctors and a huge staff ( I am always trashed after this ) and Fridays all day with 1 dr and a smaller staff. Less is so much better for me. I cannot stand the loud fast talkers (although I was once one) they wear me out listening to them. I find that is why I like therapy so much it is the most quite place in the world. AND although my mind wonders off during CD's of meditation it still helps to listen to that message and the soothing voice. I swim at water aerobics which I love but I tend to have a hard time getting there this winter or the class is cancelled. I am looking forward to the weather getting warmer and walking. I have no real excuse for not exercising but I am just not motivated to do so. I do best in a class. I can come up with many excuses why not but I won’t bore anyone with them! I know exercise is so important but I cannot fit it in with work. So good luck with your new approach and do not beat yourself up too much as big changes come one step at a time. People quit smoking like 20 times b4 it works and dieting?? Well that is like 100 diets b4 one actually can stick and lose weight for good. I can add finding a good Doctor is in there as well. I have gone through many before I found one that I love. I believe you are working for ME and I am hiring you so you best meet my expectations!! Maryb

I am on eof the lucky ones that returned to work as a phase return after 5 months. I am not perfect and I wear down as the days goes along but i have worked hard on some problem solving and some stop wasting my energy on people and stuff that does not deserve it. I have assorted health issues but I keep on trucking along. I will say I thought once a year passed I was as good as I was going to get but I still could see improvement. I think it is really tough to return to work ( us in USA have to carry our health insurance often through work so we do not really get much choice) but even the ones that volunteering feel it helps & I think using your brain (LATER ON) on ways other than home life helps in recovery if that is a possiblity. maryb

Welcome, Sorry that you had to go through this but happy you found BTG so early on. I will repeat you are still in every early stages and when I think back to those i was thinking how come I thought I was goign to be working in 3 weeks?? Drink your water, get fresh air and rest as much as you need. This recovery is not like a broken arm or such you cannot rush it and feel free to stop by often as you can to let us know how you are doing! Good luck ,mary

Welcome James, I am glad you are doign well, and are drinking your water! You sound positive and really it will be so exciting when the baby arrives. Continue well with your improvement and attitude it will take you far. Please keep us update with your good news AND if you feel blue. BTG is a great place to come to let it out when you are frustrated. Kind Regards, Mary

Oh Penny I need to add "following simple instructions" as well! :redface: WHOA that is a biggie for me. One step at a time please! And sometimes I even think "What does that even mean?":shock: So I need to add another "good thing" .......I realized I am a problem solver by nature and I look for solutions automatically and I did not lose this "strength" but I believe I have proven it daily by the obstacles I face and have overcome. My boss pointed that out to me today that I always look at things that way.

Scarlett, I am just going to add that you have not had a BLEED right? And you can get this taken care of prior so your recovery is and may never be as hard as some of us that had a bleed and than had to recover. I know with my brain tumor I was really stuck on getting it removed and having to do THIS all over again but it won't be THIS it will be easier than this. Just my thoughts. Also what will happen to your son if you wait too long and end up an in bad shape from all this worrying and walk into traffic? This is something you can control. You must realize that. You must realize we all can be hit by a car tomorrow and live for today. We all have to have a long term plan for our children and others in our lives we are reasonable for. It part of life, we can control our actions but not certain things. We need to knwo what we can do and cannot do. You can get this taken care of. Good lUck Maryb

Agree with Freedom, I miss my freedom. On my day off today my husband said "Why don't you do something fun for yourself?"... Would love to have the freedom of not paying for that tomorrow at work and the next day etc..... Jumping in my car and just going somewhere anywhere!! Cooking - as well. Somedays I have it but I cannot work and cook too. Can't do that yet. I enjoyed making my neighbor/ co worker/ friend who just had surgery a fantastic salmon salad for lunch today. It gives me such pleasure but once again can't over do it. I told her to enjoy it when I have it right now! I miss memory. I am back to forgetting things like turning on the right stove button etc....... I am sure it is due to getting better in areas but I regress in others. I want to use a word and for the life of me cannot spell it or say it right so SURI can help me. I know I should know clients by their name on the chart but I have no idea who they are. Not a clue. I watch the same shows on TV over and over like "Rainman" for comfort. 3 Good things are...... I am happy to have such enlightenment ( yes, SURI could not help me as I cannnot say that word anymore). I don't sweat the small stuff or the stuff beyond my control. I am happy to be by myself ( may be good or bad but mostly good I think-rather content with the simple things. Ok 4 things- I feel I was always pretty health conc????? ( can't spell it) "health aware and concern"..........ah "health conscious" but now I am more aware of what I need to do or have to do to make my mental and physical life even healthier. maryb

Welcome Dan!! Oh you lucky man! You have so much to be thankful for, one is you were in Indianapolis where they have a great Neuro Unit. I live north of there and that is where I would be for surgery. I hope you have continued good fortune and continue to get along so well. Please however keep us inform as we will all be curious how you get along. I am sorry about your pilot license I have no idea how that works. I say drink lots of water and listen to your body. Pushing yourself only a tiny bit at a time, we all tend to over psuh to see what we can do - maybe that is the nature of some of us to see HOW much we can do in a day!! If I had to start this journey over I certainly would be journaling along the way. AND really meditating or at least get therapy sooner. I am poor at doing both of those because that part of me that is still hyper active stops me but it would of benefited me greatly if I could of made myself do it. I need to be in a class to be accountable! That is why maybe a therapist helped me to focus and knowing i had to go back and report to him makes it better for me to behave and be mindful. Good Luck & I look forward to hearing more from you! Maryb

Ditto That Dawn! I worked a half day today when I came home I crashed on sofa for 3 hours and I DO FEEL LIKE I AM WASTING my day! I know I am not but.........I feel I have so little or not time for the fun stuff when work takes so much out of me. I told someone the other day I am back to leaving the stove burner on or turning the wrong burner off or on ( something about RIGHT FRONT - I must not understand jeezzzzz), leaving the heating pad on all day and night etc..... As hard as I have tried to do my job and only worry about myself this week I find we are short handed in every department and it will ultimately affect me in my postion. AUGH. In therapy this has been the plan for me to only worry about what I need to do. Sounds easy enough but ........you cannot go up to the reception desk and see a room full of people and not help you know?? Spring is coming though! maryb

Kel Bel, I think your reaction is perfectly normal. I think we all would like to be scanned every year the rest of our lives but I know that is not possible. I did not have annies & I imagine that anyone that does would be very worried that they are missing something big. You are feeling well now? And back to normal? ( sorry I have to keep going back to reread what you wrote! jeezzzzzz). I suffered 6 months or more b4 my NASAH and stroke - writing nonsence in charts, writing was falling off the line by end of sentence, fatigue then as bad as it is now, just was not feelign right. To this day no one can tell me what that was about. I am frustrated by that. I would like a conversation about those symptoms instead of well this is where you are now. Sorry I am no help - jounaling has been helpful to me with my daily "where am I at?" Although I really need to add what I ate that day as well. But I just can't seem to muster up the energy for that much work. I know it would helpwith my painful head days as well as my fibro. Big hugs to you for comign so far! Maryb