Teechur

I think we must have had ours around the same time (I believe within one day of each other). Yours was more serious than mine, it sounds, but the emotions are the same. I have had another serious health issue in my life and it was awful too, but this is a different kind of frustration. When you break a leg, or have a surgery, or catch the flu you can tell without even thinking about it whether you should or shouldn't do A, B, or C. With this, you can't. It's maddening. It's like not only was your body injured, but your person was too and things that used to be effortless feel impossible. I've been keeping a blog and I do find I mostly write about what is frustrating me and when I get angry, but it's helping to even look back two weeks ago and see some changes. Today is a rough day for me too, and I just went and complained on my blog that I miss that old girl I was (also very active...ultra marathoner, triathlete, personal trainer). I just want to turn back time some days. But I'm starting to have good days and I've received so much love, support, and scolding from the people on this site. (I know! I'm overdoing it!) I can't say I'm skipping along little Merry Sunshine tossing flower petals over my shoulder...but I'm feeling positive about the future. We will heal...our bodies and our souls. In the meantime, ask for hugs or help or love or rides or coffee or whatever you need because everyone in your life who loves you wants to be able to be there for you. That is a gift you can give to them--allow them to feel needed.

I'm sure I have read this, but how long was it before you were able to run again? I'm all but being tied down to keep from running. PT says to wait until I have no headache or neuro symptoms at all.

In the three weeks I've been back to work I've had to take at least one day off each week. I get to the point where I think "I can make it one more day, but I know if I want to make the two days after that I'd better take today off" and I do it without apology. I have to be careful because I only had 11 sick days left when I came back (and have used 3). It makes all the difference in the world. While I don't just say "I think I'll take the day off!" Sometimes I do measure the value of each day. For example, I know that Wed and Thurs I have my kids taking a CPR class which means an easy day for me, but also for a sub...and Friday I'm here from 6:20 until midnight for a LAN party for the kids. So if I feel fatigue, I won't feel bad about taking one of those days off so that I'll be able to handle Friday. My job is not my life. My life is my life, and if someone doesn't like it, too bad. Fire me. (Actually, I'm a damned good teacher, even since the SAH, and I brought them all cupcakes today so I think I'm good.) I won't just take the day off to sit at home and catch up on my stories...but I will if I feel that I'm overdoing it. I think one of the things that bothers me about being back at work so early on (was back after only 4 weeks) is that it feels like my life revolves around work and sleep...and there isn't a whole lot of "living" in between there. I'm tired when I get home so I sleep, then I get up and go to PT, then I come home and maybe last an hour then off to bed. Up, zombie around for awhile, go to work, repeat. Although this last weekend was marvelous, I had to keep it laying low on Sunday just so I could make it to work on Monday. (I did get a short walk and a movie in...but...oh well nevermind about what Sundays USED to be like.)

Welcome Tom! I had mine the day before you. You're only 8 weeks out and all these feelings are normal. No one had told me I'd be so tired, confused, that normal things would blow my mind and make me tired, or that I'd get head splitting headaches. (I was told I'd get headaches, but not HEADACHES!) Be careful with when you feel good that you don't overdo it (stop laughing everyone, I can learn). I had a fantastic feeling day last Monday, WAY overdid it, and ended up returning to probably three weeks prior in my recovery. This last week was the hardest in three weeks. If I could change anything, personally, it would be that I would NOT have gone to work after a month. I would have either gone part time or not at all, and maybe be starting back now. I had no idea, though. It's one thing when you're in the hospital (I was in 19 days) and laying around at home to "feel okay" but it's quite another to actually go work a 40 hour work week and expect to be able to function normally. I was tired before the end of the first hour on day one, missed day three, and so far haven't made it a full week without a day off. Will try this week, but will take a day if I need to (particularly since I have an all night LAN party for my students on Friday). I don't know what I would have done without this site. I was told to go home and rest, and given a copy of a Heart Healthy diet (must be protocol...I'm a teacher and personal trainer/weight loss coach and have very low BP and heart rate, marathon runner, triathlete, etc.). Not helpful at all! I was blessed that they took me seriously and I had a CT scan right away. In fact, they took it way more seriously than I did. I was in a lot of denial. But oh well..here we are now, alive and ready to move forward...just gotta do it carefully!

A friend brought me Left Neglected in the hospital, and I want to get Still Alice (I bet it's on Audible!). I can tell after 8 weeks my memory is getting better, although I don't think I'll be able to recall the things truly lost before (like most of the time in the hospital). If I get really tired, it's worse...but then not sure that's any worse than before (just that I get tired more often than before).

Sandi--one thing I say to my clients who beat themselves up over their weight (I work with weight loss clients quite a bit as a trainer) is to treat yourself the way you would treat your own daughter. Don't beat yourself up over mistakes, but instead go easy, nurture the positives, learn from the mistakes, and move forward. So I'm going to tell you the same thing...it is not your "fault" that you have, for all intents and purposes, brain damage. Love yourself and go easy on yourself. If you were your own daughter, would you beat her up over a few mistakes, or would you lovingly nurture the positive aspects of how far she's come and help her come up with coping mechanisms to minimize mistakes? David--glad you are letting the losers go. There's nothing you can say or do that will convince them that meeting your needs as a post SAH patient is "fair" but in fact, fair is not equal. I am allowed to leave work as soon as the kids do every day I feel the need to, cutting almost an hour off my work day (although because I'm not driving, in fact I come in an hour early every day). I'm sure there are people who do not think that's "fair" but the fact is, it takes me 5 times the effort to get through my day as it does others and I am coming in even on days I am impaired because I feel a responsibility to my kids. I couldn't care less if someone else doesn't like it. This is my fourth week back to work and it's been really tough. I took Tuesday off and slept all day. Wednesday and Thursday were student interview days so I met about 40 new kids and interviewed them which meant a lot of being "on". By the end of yesterday my brain was being eaten by spiders, I was exhausted, and my headache was at a level 8. Went home early and slept for 90 minutes before going to PT. Got some neck release massage, which does help as I tend to tense when the head hurts. Went home and took morphine and flexural, and within 15 minutes had a bile duct spasm (unrelated to my SAH, obviously, but related to a surgery I had in 2003....get them to some extent at least once or twice every two months). That with the headache sent me straight to bed last night early. I needed it SO bad. Woke up feeling a lot better today, but almost like a bucket with a leak in it, I can feel my energy draining. Thank God I have a job where my kids love me because they're being very good...quiet, doing their work, and doing anything I ask them without argument. Ah well! It will get better! Still wish I hadn't gone back to work, and did get a note from my doctor today faxed over that states that my health issues are ongoing and I should still be able to have leave as needed. That's relief as my HR wasn't sure if I could use my donated sick leave beyond my initial time off. So this will allow me to do that.

Thank you. Even though it's being repeated to "take it easy" over and over again, it's very helpful to read and to see other people's experiences. Not making excuses at all, but it isn't easy. I had a busy day yesterday; nothing I could get out of (interviews of next year's students, set up for the fundraising race this weekend, dinner with friends) and I just tried to rest as much as I could in between. During the race setup I was feeling fatigued, but good...happy to be with friends, blessed because the fundraising race is for me and they're all there on their Wednesday night stuffing race packets for me.But when I got home...boom. Not a bad, boom, though. Just interesting. I went to bed really early and got a decent night's sleep. Headachy and wobbly this morning, but more awake (and the headache is, blessedly, slight). I was talking to a friend of mine who is also a marathon runner, who is undergoing chemotherapy. We've both, of course, been told to take it easy and were commiserating about how difficult it is to determine what that means, since we're both used to "running through" exhaustion and some pain, we get a lot of mental benefit from our exercise and when you're feeling confident it's easy to ignore when things are starting to go south. So it's almost like we need to say "Okay, I can allow xx minutes of this, and xx minutes of that. I guess the regression has scared me, although I do feel better today than yesterday, but still not as good as I did the last few weeks.

Had an interesting thing happen to me this week. I'm seven weeks or so post SAH and healing has been good. Monday I had what I referred to as a "normal" day. No real headache to speak of, no cloudiness, feeling really good all day long. I'm a personal trainer and a teacher, so during my teaching day I bopped around the room helping kids like normal, and was a lot more active than I've been. Then, because I have the dumb and can't read a calendar, I had two one on one clients to train which translates into about 2 hours of weights. I used light weights for the first client and a kettle bell for the second. Neither of those workouts were anything that would have caused much concern prior to Spidey-fest. I could tell after the first client that I'd made a mistake, so I closed my eyes and rested before the second one. Both know my situation so I did modify, but the problem is it's really easy when you're working with someone to forget to take it easy because not only are you demoing the moves and correcting posture, but pumping them up to feel good about their fitness goals. Finished and I was wiped! I thought I'd sleep like a lamb that night, nope. I was cloudy and swimming all night. I woke up every hour and would lie there feeling like my head was floating three feet above me. Tuesday morning I was trashed with a capital T. Exhausted. Okay, lesson learned, right? Don't do THAT again! I called in sick and took the entire day in bed. I slept probably six hours during the day, and made myself do nothing outside of write lesson plans for the day and watch TV and sleep. When I went to PT last night there was a marked regression in my neuro. My left hand was markedly weaker and I couldn't seem to get it to keep the pattern I'd been practicing. I was on and off with cognition...just fine one moment, then completely losing my train of thought the next. I was still pretty tired, so was more stumbly. I got a firm talking to when I explained what happened the night before. Today I am still headachy, but not as bad, but very very swimmy. I have my walker at school and I've been using it because I've almost fallen a few times. Please tell me I haven't done anything permanent...this is temporary, isn't it? It's a little scary to feel I've set myself back three weeks.

So good to hear I'm not the only one who does things like that, Kelbel! I've made myself two cups of coffee at work! Always look on the bright side...better one cup too many than one cup too few!

Every day is a blessing! Today is a rough day, but even that's a blessing because a week ago I would have said it's a "bad" day. I realize the activities of yesterday impacted today, so that's okay. It was worth it. I have decided not to look back on what I used to be able to do in a sense of longing, but rather use it as a measurement of where I might get to again some day. After all, I was once a couch potato who weighed over 100 pounds more than I do do right now. I started from NO real fitness level and worked my way up to being a multi-marathoner and ultra marathoner. I can get there again. It might be different and it is definitely going to take longer than I hoped it would, but it's not impossible! For now it's one day at a time with a goal of finding a victory in every day! Today's victory was walking 2 miles on the treadmill, making homemade tortillas for a lovely lunch with my husband, and listening to my body and resting.

Sarah This is where I find my iPhone absolutely a NECESSITY. I can say "Remind me in 20 minutes to check the bread." and it'll do that. The 4s is amazing. I got it because I "wanted" it. Little did I know what an important role it would play in less than two months after updating. Being able to just push a button and say to it, "Take a note...." or "Remind me when I get home to call the doctor" or "Remind me at 10:30 to email Fred" is invaluable.

Have had a MARVELOUS day today! I walked four miles and felt really good. Light headache, but nothing I'd even pay attention to pre-Spidey (I call my SAH Spidey). I'm tired, but feeling VICTORIOUS from it!

I always joke with my kids when I'm staring right at a kid I've spend the last 75 days with, 3 hours a day and completely canNOT remember his name..."Give me a break! I have brain damage! Curse my leaky brain!" They laugh and then I make up a name for him (usually Chuck). It' when I stop trying to remember it that it'll come. I've found for the most part that being very honest with people helps. Then they are my memory for me. It's not as bad as it was even a week ago, but there are still holes. What I don't like is when people (there are just a few) start with "Remember when I visited you in the hospital?" "I'm sorry, I remember this time, but I don't recall a lot so I don't remember but I appreciate it." "No, you have to remember. It was Valentines day, remember?" "I really don't." "How can you not remember that day? It was the day before you got out?" At this point my head is pounding. "I'm serious. I really don't remember it. I'm sorry!" So far I've noticed most people are very patient, though. I'll stop talking and stare into space and will realize I'm doing that and say "I'm sorry...what was I saying? I can't think of the word." I was trying to tell my doctor I had had an ulcer on my last ummm....thingy where they stick a thingy down your throat and take pictures. I sat there and sat there and finally said, "I had one of those, you know, things where there is a hole in your stomach?" "Ulcer?" "YES! That's why I can't take the NSAIDs. The happy news is, though, I have had a few days with MANY hours where I felt completely normal! So wonderful to get that back. Gives me hope that it will soon be here to say! Hallelujah!

I don't want anything to think I'm full of bitterness and anger. I'm really not. It's just that every now and again I go through a cranky batch and I just need to let it out. I don't want to seem ungrateful or that I don't understand the true blessing I have been given not only to have a second chance at life, but in my case a third. I know me. I know when I come out of this on the other end it will be with such an even BIGGER lust for life that I'll be, once again, insufferably positive. in 2003 a pre-cancerous pancreatic tumor was found in my pancreas (obviously) during a routine CT scan for a kidney stone that was the size of Cincinnati (or at least it felt like that). IF I had not had a stone, and IF I had not gone in the day my regular doctor was out of town and gotten a new doctor, I might be dealing with pancreatic cancer right now, which would make this look like a walk in the park! I definitely had times of "why me" and I think it's okay to feel that way. But I did also have times of "Well why not me?" At any rate, long story short, I had a Whipple Procedure (one of the most complicated surgeries they do with a low long term survival rate), with multiple complications and a few "she's not out of the woods yet" experiences. It left me with chronic problems that come every 4-6 weeks, but don't hang around (which is thoughtful of them). My take from that? That God had plans for me and I was so blessed to have been given a second chance to do the most with my life and I have lived every day since then with a very clear understanding of the gift I was given. Maybe because when it happened I had time to prepare for it, which of course with this you don't. The head hurts, you go to the hospital, you sit in denial for 3 weeks, you get out and reality slaps you in the face. I do have many periods of thankfulness and peace. Yesterday just was not one of them. So I just wanted to make sure you all knew I am happy, I am blessed, and I know it. But sometimes I think it's important to acknowledge how we feel "out loud" in a safe place. The nice thing about emotions is that they are transient. They never last, good or bad. But as long as the good emotions outweigh the bad, that's a pretty blessed life!

I know people mean well, but if one more person tells me there's a lesson in this (I know that) or it's building character (I am a freaking Looney Tunes factory I have so much character), or it's "inspiring how well I'm handling this" (I'm not)...I am going to go postal! My PT is going very well. I have gone from stumbling and requiring a walker, falling down daily, to being able to walk on my own and even balance on one leg. I've done GREAT...and I was hoping that would mean I could run soon, but now it sounds like it'll be months. (I did cheat and run this weekend, but the doctor and PT both said until the headaches are gone, nothing that jogs the head at all.) So I had a race I was scheduled to run before Spidey and I was planning on walking it. I thought I'd better double check with my PT and he didn't say no, but he said no. You know how they say "no" without really saying no. I know he's right...he said that he was concerned the fatigue would affect my balance and the size of the race I might get jostled and fall and set back my recovery. I feel like right now I am "Tory, who had a stroke" where seven weeks ago I was "Tory the personal trainer, teacher...the one you see running all over town. She's great!" I want my life back and I'm SO angry! I know all the reasons I should be thankful, and at times I am thankful. I really am. I know how much worse it could be, but even knowing that sometimes I just want to scream (except it would make my head hurt), and I want to cry, okay I do cry. I just want it to be over and I want to be me again. I'm not looking for sympathy, because I am sure we've all been here. I just wanted a place to vent.

If I'm tired or have a headache I'm finding my mind "reboots". It just reminds me of using a computer...going along fine then out of the blue, the screen goes blank and you get the POST beep when it starts back up. It takes a few minutes, and then I can function again. I remember next to NOTHING from the hospital. Little bits and pieces come back, and pictures make me think I remember things, but I don't remember in a real way what happened. I am told I was perfectly normal in the hospital and didn't act impaired at all. One thing I notice is that if my brain is rebooting, I need to stop forcing it. If I do then I'll end up with a headache. It is very odd to me that thinking too hard gives me a headache! :shot I'm thrilled that I'm starting to have periods of not even thinking about thinking, though...just doing without effort. Makes me feel excited about the future!

When I was in the hospital I developed a LOT of ticks and jumps. I'd feel like I was dancing in bed at times, and a friend told me I did it in my sleep too (when I fell asleep mid sentence while she visited with me). They treated me with antispasmodics and anti-siezure medications.

Interesting! I notice that certain music I didn't listen to much before now is all I want to listen to. I'm the opposite with the dreams...I have been having TONS of nightmares! Having to eat zombie babies, being chased by monsters, shudder! I had some other things, but my brain just farted and that was that!

Hi Janice I have noticed, too, things just coming back out of the blue. My PT mentioned yesterday that he was amazed to see me walking in looking at my phone. I used to walk and text all the time, but that went by the wayside after Spidey showed up. I can't always do it, but when I can it's without thinking and i love that. No headache in two years? Hallelujah! How nice! I'm looking forward to mine being wished out into the cornfield, but that hasn't happened yet. I'm just six weeks, though. Excited about things...hmmm...that is very interesting the way you put that because I have definitely had a lot of emotion, but my "highs" that are part of my natural personality haven't been as high. My husband does so much to make our lives fun, and he's really trying right now to do special things for us. We went to see Big Bad Voodoo Daddy (swing band) last weekend and it was great, but I wasn't as excited about it as normal. Excitement takes energy, though, and perhaps it is just our bodies doing their best to conserve it. (That's not to say I wasn't happy about it, didn't enjoy every moment of it, but I didn't have that "Wooo hook! This is going to be AWE-SOME!!!!!!!" feeling I normally have.)

I'm in the US too! Washington state. Yup, nothing afterwards. I got a handout on "hemorrhagic stroke", my discharge papers that said "Take it easy for 2 weeks, limit exercise for 4 weeks, no strenuous exercise for 6 months--patient needs PT" Then a two week followup that was really just a little over a week out because I was really struggling emotionally. Agreed with using a walker (a neuro PT had suggested the walker on discharge), don't drive "until you feel ready" and that's it. Go back to work tomorrow. I don't know what I would have done without this site and some other UK sites that had such CLEAR information. No one told me I'd be so tired, emotional, tired, angry, tingly, sensitive to light, heat, cold, sound, and colors, dizzy, scatterbrained, etc. BTG helps me not feel so alone! I'm a pretty "up" Pollyanna kinda girl, but I was getting pretty dark there for awhile because I didn't know what was WRONG with me! So thanks everyone!

Thanks Michelle I actually did cancel the appointment. It was a workout with a new client and honestly, I just can't do that today. Funny, you're the third person who has pretty much said to me, just relax and let your body catch up. In the doctor's office I tripped and my mother in law told me to slow down because I was letting my feet get ahead of my body. Then my doctor said "You've never let anything slow you down! Even with your digestive issues, I've always known you to just power through, but you can't power through this." (I get chronic pancreatitis from a surgery in 2003.) Right now I'm under the quilt a local church sent to me, eating homemade yogurt with fresh strawberries, and watching Discovery Fit and Health.

My mom sent me an article early on about PBA and it was very interesting. I don't think my emotions are inappropriate but more exaggerated (thank heavens). I'm not laughing like normal, though, and I miss that. I'd probably be correct to say I'm dealing with a little depression. I remember reading at some point (maybe in the hospital) that PTSD was common after SAH and i thought that seemed far fetched. Now I'm realizing that not only is it "fetched" it makes sense. I'm having a rough day today and want to cancel an appointment with a client, but feel like I shouldn't. My head is killing me, though, and I'm not feeling "right". Maybe I should. I hate doing that, though. I'm just not feeling well.

David I am so sorry that you're wife is ill. How distressing for you. You're in my prayers. I relate to highs and lows, although I think mine aren't quite as big. I know yesterday I felt pretty crummy most of the day but once I got home and rested I was feeling relatively normal. Probably about 80%.

I am understanding that now. Friday I felt GREAT. Saturday not so much. Sunday not as much, but I did get out for that short run. Yesterday headache all day, and today I'm feeling "sick". I find it so hard to explain to people who I'm feeling lately. Sometimes it's just "off". Sometimes it feels like my skin hurts...or my clothes are touching me too hard. My brain today feels swollen and tight and I'm unsteady. I actually gave up my bootcamp classes through the end of this month. I hated to do it, but I have to. It's just too much right now.

David do what you can! When I had a Whipple Procedure in 2003 (removed part of pancreas, intestines, gall bladder, bile duct, kitchen sink, my inner child, and all that gum I swallowed as a child) I started with 10 min of exercise per day at home. That's all. First time I walked on a treadmill I was so beat, I cried, but what I wanted was just one little moment in my day that was mine and in my control. It was really more of a mental thing. yesterday's run was also a mental thing. Today I'm very tired, confused, and headachy. Maybe I paid for it. But don't feel like you must do what someone else does. YOu just have to be the best David you can be on any given day, and energy conservation is the name of the game!