Teechur

It is so interesting how collectively we say how we are all feeling at times. What really hit me was the comment about the wheelchair. I was having a really bad day on Sunday and I really just wanted to stay in bed. However, we were celebrating my husband's birthday. I was angry because, once again, my head was intruding on my ability to make plans and execute them. I told him that in some ways it felt almost harder to have this sort of healing because some days I'd be able to do things, and then people would think I should be able to do them EVERY day. Then on bad days the depression can hit SO hard. We used to joke that my "Lifetime Movie" would end with me crossing the finish line of the New York City Marathon but the truth is, there are days that are great and I'm out there doing stuff and feeling like "suck it brain!" and then there are days where I'm shuffling along hugging walls wearing sunglasses wondering if I should shutter my business and quit my job and how would we live if I did that. I had to laugh, then, when I saw you guys writing about "Oprah" moments. Nope, it isn't like that. What's it really like? It means your loved ones have to upend THEIR lives and put up with "Not today and maybe not to tomorrow and probably not the day after" and thank heavens if you don't have kids because it's hard for them to understand. I find myself resentful that someone in my family right now has (thank the good lord) a very early caught form of breast cancer and the entire family is wearing pink ribbons and I'm thinking "Where was my red ribbon?" A friend reminded me that I didn't complain, and in fact understated it and kept saying it was all okay, nothing, in fact. People "get" breast cancer is bad. They don't get "brain bleed" or "subarachnoid hemorrhage". That sounds like a pregnant spider or something. They assume that if you're talking to them without drooling, you're okay. Often I tell them, and they immediately say "Oh but it looks like you're fine now..." so then it's "Do I say, 'for the most part' or do I really tell them or does it matter?" and of course what they WANT to hear is yes because they don't want to hear that a super health conscious 47 year old could have a stroke, especially if they are NOT super health conscious. It's having a million things to do and the brain power to barely do two. It's trying to figure out when in your week you can slow down, realizing you can't, and just powering through anyhow. It's having to call for a ride because it's not safe for your to drive. It's being thankful you're alive one minute, and wanting to kick the teeth out of the next person who tells you "You should just be glad that you're alive." because it's not for them to tell you how to feel. Then it's feeling guilty for feeling that way. It's all the little things you can still do like snug your puppies and enjoy your husband and the changing of the seasons and good friends. It's just life, but with some extra spice thrown in. Sometimes I love it and sometimes I just want to go jump in a creek. Fortunately most of the time it's the former.

Maybe the high sugar cravings post SAH is that it's the brain's fuel is glucose and when it is healing it requires more. When I first got out I seriously wanted to mainline sugar. I don't know if you have Peeps in the UK but they are sugar covered marshmallow or in other words, sugar covered sugar. I wanted to INHALE those things following my SAH. In addition, I went on a medication for my headaches that caused me to gain 9 pounds in one week. The only good part was that prior to that I was on a medication that made me not want to eat (Topamax) and I had lost 7 pounds so I was at a good weight. Unfortunately I gained another 4 pounds. I'm down about 4 of those 11 pounds, but still can't seem to get the others to budge, and I do watch what I eat very closely. I journal my food and exercise almost daily (unless the headache makes it impossible, so a few days a week I may not be able to). So I feel your pain in the gain department. A few pounds up (I want to be 125, I'm 132) may not seem like a lot, but I'm a personal trainer and weight loss coach and it's a little embarrassing not to be able to get those last 7 pounds off. However, it's all medication. I'm still on a lower dose of the amitryptiline and it just hates me. I wish I knew what was making it do that.

This should be stickied because I think it is so beautifully put. We are not statistics we are people. Every doctor needs to hear that again and again and again. A few things I would love to be required to be removed from all doctor's vocabulary: "You should not be feeling ____ at this point." "I don't know why this still hurts." unless followed by "but I'm sure as heck going to find out what's going on!" "None of my other patients have had ___ this late." It makes you feel like you're "doing it wrong" I also wish that people would understand the pressure they put on us to "feel better" when they say things like "Well it could be worse!" or "At least you can still ____" Yeah, it could be worse and we know that, but doggone it takes a long time to mourn what we're no longer able to do. Plus, I don't know about you guys but I seriously DO feel guilt at times because I know I'm lucky to be able to do the things I do but at the same time I still am frustrated at the limitations I have. Like I should feel lucky ALL the time. But they mean well so I don't blame them. I'm just happy we have here to learn from each other because it helps when you get out and you have no idea why you feel the way you do, and the doctor releases you with a "Ciao" and "see me in six weeks" and "go back to work next week" and no information about what it's like after a stroke. Then you have one doctor who says yes you had a stroke and another says, it wasn't a stroke, and you just want to say galloping ghost on a great white! Call it Jehosaphat for all I care, I have a headache and I keep running to walls! Then that doctor is too busy following protocols to bother to ask you if it even HURTS or how or where or why or when. Keep looking for a good doctor. They are out there. I think I have one now, thank heavens.

The hardest thing for me was when I had to cancel all of my fitness classes the summer after mine. I felt like I was admitting defeat. (This was because I had been told I could return to full time teaching four weeks after my bleed so figured teaching summer class, five months later, would be no problem). I just did not expect I'd need to do that and I felt like I was letting others down, losing business (I lost a LOT of business as well as some long time customers who suddenly decided I was 'milking it' when one of them had a TIA and decided it was the "same thing"), and costing us money. Plus I was angry that my body was letting me down. It won't be forever! I wish I'd slowed down sooner. You're being smart!

How dare a doctor tell you that you don't have headaches! Excuse me??? Do you not live inside your body? I'm okay with a doctor saying "I don't know why you still have headaches" but to say "You can't be having them" is ridiculous. Yes, you need a new neurologist. And I absolutely refuse to believe that living for the rest of our lives with chronic pain is our new normal. We have to keep seeking treatment and advocating for ourselves. Maybe it WILL last forever but we can still try. The problem with Florocet is that it can in some cases cause rebound headaches. Because of that, my neurologist does not want me to take it more than once or twice a month. (We call it Vicodin here.) The goal is to calm down the pain receptors and because the Vicodin can cause them to actually be hyper-sensitive I can't take it too often. Plus, I really can't take it while teaching. You're so early in the recovery no one should be saying you should or should not be feeling this or that. My new neuro said, in fact, that there is no "timeline" on brain injury recovery and was surprised that my first neurosurgeon said my headaches would be gone in 4-8 weeks.

Oh RB, God bless you but that is so depressing... How do you handle it? Do you have anything you can share? I'm at one year 8 months now, daily chronic headaches. I get some relief when I run long distances due to endorphins. It isn't always total, but it is very welcome. I pay for it later with bad headache, but my doctor says it does no physical harm and encourages daily exercise. I still work full time as a teacher and run a fitness business part time. Need to work, and too stubborn and hopeful to close the business I worked so hard to build. For me, I just power through. I use an ice helmet for topical relief. I wear sunglasses indoors and keep my lights in my classroom and at home low. I carry ear buds and use them for sound relief. At work sometimes I'll go into a restroom and turn the lights off and use them in the complete darkness. Even 2 minutes will sometimes reset enough so I can go back and think again. I think the pain is frustrating, but the MOST frustrating part is the trying to think and teach and get through the day with the black blob of goo that is the pain roadblocking everything. I can be teaching and not be able to get technical terms out (I teach IT and am very intelligent but sometimes come across as a complete nutball) out past the blob. Or I can be trying to learn something in a training and it's sort of trying to move through my ear past the blob to take hold in some area of the brain where it'll actually stick and if it touches the blob the blob is like flypaper. It'll stick to the blob and not find purpose. (You can tell I have a lot of visuals related to this blob that is my headache.) I haven't found satisfactory pain relief. While my GP will give me low dose Vicodin, it's not very effective and there are rebound headaches and my neuro wants me to limit that to no more than once or twice a month. I have tried over the counter (I think you call it para--oh dear it just flew out of my head, wait paracetamol) but it's like taking candy. I have tried marijuana (legal here) but it is only mildly helpful. The price/relief ratio makes it not really worth it. (I never used it prior to this.) I would welcome any ideas because I am kind of resigned to "Okay, Spidey has moved in for a good long time so I just have to live with him" (that's what I call my headaches). I am always curious how others find ways to deal. Plus it is obvious that we're not the only ones and I think that when we reach out and say "This is my deal" that we open the doors for others to share and learn.

Yup! I pass all my tests too! I run marathons on some days (that's 26.2 miles or 42 km) and today I am in bed with a headache and three puppies! We are mysterious and wonderful beings and the brain is amazing.

Glad you can at least laugh about it, Desy. So sorry to have this going on. Very frightening, but the adrenaline thing sounds very reasonable. I hope they find answers and you can rest easy. It's not good for the pituitary gland to be on such high alert all the time.

I have tinnitus and have had nausea with really bad head pain, but it is not persistent.

My first reaction to this is to be really ticked at him and say "Grow up! Health crises happen, as you know, and when you're in crisis, she will care for you." But there can be so many things going on that he's not telling you. Like kids, sometimes it's hard to get men to face up to their feelings of fear, inadequacy, failure, etc. (no matter if they are unfounded or not) so it can come out in anger. If this was just one time, I would let it go and be sure to be very thankful when he helps. Even if you think of something as his responsibility, thank him. We all like to be appreciated and who knows, maybe he is feeling that way (even if you are thanking him already). I happen to have an awesome husband who I've been married to for 28 years and I truly believe that part of our success is that we never take each other for granted, and always say thank you and let the other know how appreciated he or she is. (I probably do more than he does, however he does more than I do around the house because I teach full time and run a small business.) If this seems to be smoldering, then it's important to address it because your healing will be compromised if you are under the added stress of trying to placate him and not rock the boat. During a time when you're both relaxed and alone, talk to him about it and be very honest about what you need and why. You have had a very serious health crisis and it may take months to heal, or it may take years to fully heal. He has to come to terms with that. The fatigue is as much a part of brain healing, as blood is a part of a serious cut. He wouldn't walk into the kitchen after you lobbed off a finger and say "It's time for you to stop bleeding now!" Sometimes people need to be told very clearly that you are injured and just because it can't be seen, doesn't mean it is not affecting you. And yes, while it is also affecting him the deal is that you can't do much to change that and it should not be put on your shoulders. Maybe he needs to read the carers board and get an idea of what this is all about. Even if he works at a health care worker, working a shift and dealing with 5-15 patients where there is no serious emotional connection is entirely different from caring for a loved one. I have given a lot of thought over the years to "In sickness and health" and really, I don't think anyone understands what that truly entails, unless they marry during a time when one is dealing with a health crisis. I had a serious crisis 10 years ago and the things my poor husband had to do for me were embarrassing, very difficult for him (he has a super queasy stomach), and really taxed us both. But because he was willing to say "Okay, you need this it's my job to do it" and work with me, my healing was so much easier. Again we had another short term stress in 2008 with complications from a surgery. And then last year this. Did we ever think this was going to be or life at this early in our lives (I'm 48, was 38 when I had my first health crisis)? Nope! In fact, if anyone would have a health crisis you would think it would be him as he is overweight, but no longer sedentary (so proud of him). I, on the other hand, healthy weight, healthy diet, exercised daily, personal trainer, blah blah blah. But you never ever know what your life has in store for you so that's all a part of the commitment you must make to each other when you decide to come into a long term relationship. "Will you love me if I'm in a wheelchair?" may seem like a silly question we play with our SOs when we're first committing, but it is something that bears some very serious talk. I pray that you will be able to come to terms with this with him because he has chosen to make a family with you, and while maintaining your health is your responsibility, helping you in crisis is his. That's the role he chose. And as much as I hate to say it, Sweetie, if he can't take on that role you need to find a man who will because true love is kind, patient, and loving in all things (notwithstanding the occasional outburst).

It is scary! It is very scary. The good news is, according to my neurologist, there is no more chance of you having it again since it's non-aneurismal, than a regular person. Sometimes they just happen and we don't know why. But one thing that is good about it having happened is that they have a great shot of your brain and know just what is and isn't going on in there. i was encouraged by having a "clean" angiogram. The next few months will be very interesting. You will have a lot of feelings that will be disconcerting. Some will be emotional and some will be physical. Just come on here and say "Hey! My head feels like someone is pouring water over my brain" and within moments people will pop on and say "Yes, that's normal." Oh and for the next few months, "normal" is nothing like your regular normal. I second and third getting help with the kids. Do NOT be afraid to ask for accept help. One of the challenges of having had a brain injury, and this IS a brain injury, is that people can't see it. They will see you and be relieved that you look "fine" and sometimes you will feel fine, and ten minutes later you want will to crawl under the bed and sleep for days. It will be very important that you do NOT try to push through it. It won't help you get past it. Brain recovery is very very energy consuming. You have to make sure your loved ones know that and that they are on board. There is a carers board on here, and it might not be a bad idea for them to look through the board. I think most of us wish we knew what we were in for when it happened. I was in denial and went back to work way too early (I'm a teacher and run a small business as a Wellness and Running Coach). I had no idea how serious it was. Not, "I might die at any minute" serious, but "This is going to take a long time to recover from" serious. Just be very careful about over-stimulation...grocery shopping, driving, even television can just be way too much for your brain to handle. I didn't drive for months because it was just way too overwhelming to keep track of so many things. I used my iPhone for EVERYTHING....seriously (Siri-ously) I used it to remind me of everything. You will get through this and it won't be as easy as you hope or as bad as your fear. Tory (18 months post SAH and back to running marathons)

I got a tattoo last week on my right arm, the side my explosion was. It says "Defy" on the inside wrist and the tail of the y turns into a flight path of a dragonfly that is on the front wrist. This is my reminder that I have defied the odds in so many ways (not just the SAH and the not dying thing), but that I continue to move ahead through defiance. It is a great reminder that I am still becoming and not broken. I know this may sound extreme to some, and I'll probably never get a decent job or become a Japanese business man, but it is so meaningful to me. (By the way, it's not the only thing that will keep me from ever becoming a Japanese business man.) I'm in Disneyland this week and today was a good day. Rode my first roller coaster since the SAH and while I did get a headache afterwards, it only lasted in any ouchie capacity for about an hour; a fair payoff. Yay! I love LOVE roller coasters and was so afraid that was it for me! So nice to be able to wander all around Disneyland with my honey and have fun. The only damper today is that one of my new meds really gives me a short temper (I tend to have a very long fuse). It might be from coming off the Amitryptiline since it can be used as an anti-depressent. Hope that takes care of itself soon because my husband it like, "What the HECK?!" and I have to admit, I feel the same like "Why did that upset me so much??" Even on my worst head days I'm usually pretty even keeled. Okay off to bed1 More fun to be had tomorrow!

Teaching is physically and mentally draining on a good day. I went back six weeks post as well and it was a disaster. I had such great students because I teach in a program where they leave their high school and come to me for half a day of IT training (computer repair, network admin). Ended up needing another 2 weeks off then 2 weeks half time. It still wasn't enough and I never made it through a full week that school year. If I had been in a comprehensive high school I would have had to leave my job. My last year before going to this current job I was teaching seven courses a day; not seven periods, seven separate courses within five periods. I could not have done that after my SAH. Last school year was really challenging, but I made it through. I did have to take unpaid days as I ran out of sick leave, which was depressing. Summers are great, but the idea that I can rest up and be ready for work doesn't pan out. I get no difference in head pain if I lay about all day. It just hurts in bed. But changes have come. I'm back to running; ran 20 miles yesterday after teaching a bootcamp. I do have to listen to my body more than I used to. My thinking is back, although the pain can interfere with recall and speed of thinking That's only a factor of the pain not the brain damage. It does get better and yes, we are lucky to be alive. Some days I even believe that! LOL

Crazy, isn't it, that we have to wait so long to hear simple things like, "Healing takes time; a LOT of time. I may take well over a year, but don't worry it gets better so where you are now won't be where you are in a year." or "We think this will work, but if it doesn't we keep going and try a new medication" or even "How have your headaches been? Any better?" I've had three neurologists and one neurosurgeon and one was even a headache specialist. None of them aked me about the quantity, quality, type of pain, etc. The only time one asked about how often was when he had to do the paperwork for Botox, which requires you to have headaches at least 15 days a month, and at least one bad one a week. This was a year into our relationship. Woke up with a doozy today which makes me cranky I have tons to do today.

It just makes my blood boil that we can't seem to find out what is happening to us without seeking out the information on our own! Mine was described as a "very small bleed" and nothing to worry about. I was in the hospital for three weeks, but still no one acted like it was anything big (or maybe that was my perception). I was in CCU (critical care unit). Sent home with "rest and you can return to work on Monday". You are being very wise to take things in slowly and understand that this may be long term. Doesn't mean you won't heal, it just may not happen as quickly as you hope (or as a short hospital stay would indicate). I have a friend who had one who had NO hospital stay and is still suffering from headaches two years later, although everything else is fine and she runs multiple marathons (26.2 miles or 42 Km) per month.

Now are there 3 and 4 or 4 and 5? Finally got a referral to the UW (University of Washington) Headache Clinic and was SO blessed that after five weeks of processing the referral, I got in relatively quickly. The first opening was in November, BUT if I was okay seeing a Resident and then the doctor (so the Resident would do all the intake) I could get in the next week. Yahoo! It was like I'd won a date with George Clooney! (Husband says no, I cannot date GC because he is responsible for my SAH as I had it when we went to see one of his movies. I say it was the reservoir-sized diet soda that I was holding.) Anyhow...This is the third and fourth neurologists, if you don't count the neurosurgeon (my original, "It'll be fine in 4-6 weeks, you can go back to work Monday" doctor). I actually truly felt listened to. I mean like the first time, really truly listened to. It did not feel like they decided as soon as I walked in just what was wrong and how they would cure it. They truly listened. I first had an extensive written questionnaire that asked questions I'd never been asked before like what makes the pain worse/better, what is the quality of pain, what type of pain, etc. Then a long interview that lasted quite a long time, again with questions that I felt should always have been pertinent like "Does the pain get better or worse throughout the day on a bad day?" The main neuro went over how pain neurons work and told me that she felt that even after 18 months my brain is still healing (even though another neuro told me that the scans show it had healed) and that the pain neurons were firing on all pistons. That can happen sometimes after a brain injury. Apparently if you have a family history of migraines (I do not) your brain can "turn them on" after a brain injury as well but since I hadn't responded to any migraine treatments, nor had the family history, that was ruled out. They encouraged me to buy a book called "Stahl's Illustrated Reference for Pain and Fibromylagia" which is a medical textbook, so I don't have enough knowledge to understand all of it. However, we went over some of the illustrations and she showed me the mechanisms that are at play with the medication I was currently on (Amitryptline) and told me she would never have put a woman on that high of a dose because of the weight gain. I gained 9 pounds the first week I was on it and have had to restrict calories to keep that full gain at 11 pounds.* Then she showed the next medication she was going to put me on, Gabapentin and discussed how that worked, and eventually she wants to try Cymbalta, but the nerves need to settle down first. So she reduced the Ami to 25mg per night, added 300 mg Gaba, a B vitamin complex (has already helped with my dizziness upon standing), and a supplement called SAMe. So far no love. I had bad bad BAD headaches the first four days after, I suspect partially the change in weather, and partially the change in meds. But then I had four good days of light headaches and periods of no pain. I knew the first test would be this last week when thunderstorms were headed our way. They came early and unfortunately brought headaches (close to going to the ER pain) with them. So I am hopeful. I didn't expect anything to work immediately. She did say that no, they would not be forever. She was also surprised that my original doctor even put any kind of a time on the headaches, because she says that we simply don't know because each person is different. (She had told me they would last only 6-8 weeks.) She also poked holes in the concern that after one year I was about as good as I'm going to get. Plus she, well they LISTENED! They heard me when I said who I was, and encouraged me to keep running and add strength training (I already do). They also encouraged daily sun, outside, soak it in during the morning hours and a SAD light for Winter because that can help the body with natural pain killers. They also did NOT act like there was one road that we are all getting on and even if it is evident that it's not necessarily going to get us to our goal, we are not getting OFF by-God! That's how I felt being treated with migraine medications because I don't have migraines. I will admit to being down today. It has been over 18 months and I truly feel that nothing in the headache arena has changed in the last year. School is back in session in less than a month and I am still dealing with 1-2 really bad days a week; days that will keep me in bed some weeks. I foresee another school year of trying to make it through the end of the day, and not being the teacher I used to be. That is very important to me. I will now be two years (school years) out so none of the kids will have been here when I had my SAH so won't understand the issues I have. I will have to educate them about it, without sounding like a whiner. I'll have to do it carefully as I get to know them because if I happen to have anyone who decides he doesn't like me, that can provide ammunition for causing problems. (This is not something that has happened to me very often in my 18 years of teaching, where a kid has disliked me for some reason and has tried to really intentionally hurt me emotionally or physically, but it does happen. That's why we have to be so careful about what we disclose. I had a colleague with serious chemical sensitivities and all the parents knew, all the kids knew, so one day three boys decided they were mad at her and literally doused themselves in cologne, which sent her the hospital. The parents, rather than discipline them, went to the media when the school suspended them, and she eventually was forced out of her job and had to take medical retirement all because some insensitive jerks wanted to "get" her.) So I am tentatively hopeful with the new doctors (and the new Doctor 'cause I am a Whovian). I sure hope this is a better school year. At least, so far, my administration understands. I am so fortunate because it happened when both of my administrators were new here! They could very well assume that I'm just a hypochondriacal nut job just as easy as take me at my word that I used to be a really good teacher. (No. Really.)

It always helps to read on here. I'm so sorry Wem. You are not alone. I was commenting to a fellow teacher that I am disappointed to be heading back to work no better than I left. But it is what it is and we can't force it. Doesn't mean we can't be ticked about it when it limits us, though. *HUGS*

Sweetie you are still very early in your recovery. I know that you want to be well. I felt the same way. I'm sure we all did. There comes a point, though, when the desire to be well but the lack of ability to force it becomes very depressing and you have to just kind of let go. The recovery from head trauma is like one step forward, two steps back. Then it's 3 steps forward, one step back. It's this kind of dance. You'll feel like you have a month where you've moved nowhere and I think that's because the body has to rest and adjust. Then other weeks you'll feel like you can climb a mountain. The recovery of the brain is not linear. With a sprain, broken bone, even surgery on another part of the body there are steps to recovery that are very linear. The doctors can tell you almost exactly what will happen and when and as long as you're relatively healthy, you are a little better every day. Brain injury is so not like that. On a clinical level, I find it fascinating how it hurt to think, how I still blank out at times, how I feel 'normal' for days at a time and then I feel like a total head case again. On an emotional level, it is maddening and frustrating and it makes me sometimes want to throw a tantrum and say "Life is so NOT fair! I didn't deserve this!" Fortunately that's rare, but it's also a part of recovery. I truly believe that. So just try to be who you are at any given moment. Try to be patient. Try to be good to your body. But you can't try to be well because you're not and your need to physically and emotionally give yourself time to heal.

I wish I could scoop you up and whisk you away from everything--every distraction and pain and frustration so that you can truly heal from the inside out. One of the things that I wholeheartedly believe is that we must give ourselves permission to grieve what we lost, to be angry at limitations, and even to say "You know what? This isn't fair!" WITHOUT following up with ...but no one ever said life would be fair. The reason I think we need that is when we try too hard to put our best face forward without dealing with the depth of emotions that come with a major medical crisis, we push it down until it has to come out. Think about it like having bronchitis. If you had a serious case of bronchitis and your doctor said, "Do not go to the gym, rest, take these medications and don't do anything to stress your cardiovascular system for 14 days" you would do that, right? You wouldn't say "Well Bronchitis isn't going to change me! I'm going to go out for a run *gasp* *cof* *wheeeeeeze*" But that's what we try to do with our emotions, and others try to do it for us. I know they don't mean to do it TO us, but they try to tell us how lucky we are, how blessed we are, how we should be glad to be alive...and it's usually right when we're in an emotional crisis and we NEED to take time to feel the emotion we feel without being told (even in good intentions) to stop feeling that way. Allowing yourself to grieve helps to clear the path to resolution and acceptance. It's like you explain that almost "train barreling towards me and I can't get out of the way" feeling that you have. Why do you do that? Do you think it's because you have such changed emotions that now that's how things are? Or maybe is it that you haven't allowed yourself to grieve the bonding with your second child, the loss of your five children, the limitations you feel physically and mentally. Instead you blow up because you've bottled SO much down that your body has to give. I am so sorry for how bad you're feeling. Yes, I truly believe it will get better. In the meantime give yourself the opportunity to heal emotionally and mentally. Feel it all and then give it the outlet to let go so that you don't have to bottle up. This is not one of those "Pull up your big girl panties" types of things. I never truly understood PTSD until I went through my SAH and "met" people also going through it in varying levels--many much worse than mine. PTSD is very serious and deserves the time it needs to resolve. I just pray you find the outlet that allows you to find some peace.

That's how I feel too. I think my main worry is that this is it. This is the rest of my life, day to day trying to figure out how to do everything I need to through a haze of pain. I AM super happy to be alive, and feel very blessed in so many ways. I just am afraid of having to "slow down" at the tender age of 48. I know a lot of people already are slowing down but that's not me. For me, not accepting my limitations feels like what I need to do right now. Yesterday I did something I have done many many times before and it was HARD. By the time I finished I was drained and I had to dig very deep to finish. I don't remember when this has been as hard in the past and that makes me sad. But at the same time, it made me proud to push myself. I just don't want to think that the hard is going to last forever without at least my abilities being better. I'm afraid that if I accept it, I will lay back and it will become a self fulfilling prophecy. I accept slowing down so I don't push it any more and therefore I slow down. I think mentally and emotionally I am back to who I was, except maybe more laid back which is a good thing. I also think that it has given me even more drive to be as healthy as I can and make decisions that are right for my body and my longevity. Physically no, but if I don't push past my current limitations, I will never GET past my current limitations. As I always tell my women bootcampers when we do pushups, "Start off your knees because if you don't get off your knees, you'll never get off your knees." In other words, challenge yourself daily to move a little beyond where you are now, but don't be afraid to rest as needed.

I am so sorry you joined our club! But welcome! One of the benefits of being fit when you had your SAH is that you have only one health condition (I assume) to deal with. Imagine if you'd had high blood pressure? It could have left you a statistic. I am fully convinced that my low heart rate, and low BP is why I didn't end up much worse off. I was stupid. I felt the pain and continued on to see a movie, well I sat through a movie willing myself not to throw up wondering why my head hurt so bad. Then I went home and laid down with a pillow over my head. Finally I posted on Facebook something dumb like, "I have the worst headache of my life. Is this what a migraine feels like? I've never had one." Blessedly four friends posted "Get to the hospital NOW" along with lots of other friends with suggestions for coffee, Excedrin, etc. I still thought I was being dumb, but when my friend Amy started texting me, asking for Roy's number, asking for my address so she could call 911 in my area…I relented and I went out to the kitchen where my husband was making dinner and said "I think I need to go to the ER". He literally dropped what he was holding, and raced me in. I still STILL thought I was being dumb, and was so embarrassed. A CT scan showed a bleed. I was in the hospital for 21 days and it's just been a roller coaster ever since. I am so glad that you have decided to go back to the gym. You might go early and just walk on a treadmill or use bands. When I got out of the hospital it was important that I do things that were "normal" and that included going to my bootcamp classes, going to my running classes. (I am a teacher and a personal trainer/fitness/running coach and all of my classes had started that weekend I had the SAH). I didn't participate right away, but even just being there helped. I am about 75% back to my former fitness level. I'm actually running again, but I find that hard core running is way to big a challenge. I ran a 5k today hard, like I used to. Not only did I not make my goal (I have taken 1st in my AG in this race twice), but I have been paying for it with a bad headache all day long. I'm not sorry I did it because I feel like sometimes I need to push the envelope or I'll never know how far I can go. Before my SAH it was not uncommon for me to run 2-3 marathons in a row (Sat, Sun or over holidays). Now I have run 4 halves in a row, but I did them easy. (And I know how that sounds to some people, because I'm always being told I overdo it. But I am out of dealing with neuro issues, and now just have the chronic headaches.) Wem, what you said was so insightful. I think we need a thread of just great, meaningful posts that we can all go back and read when we need them. I think when people want you to be better it's because it scares them, particularly if you were very active before, or are very young. Plus you can't see our pain on the outside. I ham blessed to have a much bigger heart for people with chronic pain, and for people with hidden disabilities. The period when I went through memory and cognition problems, really gave me an understanding of my students who struggle to maintain and increase their knowledge. When my headache is bad my concentration falls and I have a hard time expressing myself, but I think that's as much a factor of the pain and just not having the energy to put into the pain and witty repartee at the moment. Finally, do not be afraid to ask for what you need. For example, I've never been a "hugger" but I understood that people would want to hug me. There was a period of a few weeks where even my clothing on my skin "hurt" so I had to tell people coming to visit that I couldn't be hugged right now. I explained why and they were good with it. I also had to finally put my foot down with one well meaning friend who would scour the internet for "cures" for me. It was a big challenge because she didn't understand and to her, that was how she could help. To me it was stressful. I finally had to have my husband talk to her when even what I had to say didn't get through. So do not be afraid to say "I need this" or "I can't do that right now". Here is hoping that soon this is just "something that happened awhile back" and all you have left from it is life lessons and memories.

Lola come over here and sit with me and we can hug and cry together. Maybe we will both get back the life we lost, or maybe we won't. We're still blessed in so many other ways. We are allowed to feel ticked over this if we want to...we just shouldn't wallow in it. I'm saying that to you and to myself. Wallowing gives it power. My "stroke" scared everyone, least of all me. Why? Because if "Tory could have a stroke, then what about me?" My problem was, I wasn't scared because I knew it wasn't serious. I was in so much denial that I literally scheduled to go back to teaching full time not even 4 weeks after my SAH. I just keep pushing the envelope. At least now I don't have to worry so much about one day killing me off for the next three days. That is a HUGE blessing. You will get to that point too. I had a pancreatic tumor that was discovered super early, but was "pre cancerous" (all enclosed so I never needed chemo or radiation). I did have to have a Whipple Procedure, though, and it's called the "Grandaddy of all surgeries" because it's extremely complicated, leaves almost all patients with lifelong problems (mine are painful but not anything that is at all serious). I always thought that was the best and worst thing that ever happened to me. Best because I had just lost about 100 lbs and it really showed me what life might be like with chronic illness. It really gave me a passion for healthy living. Worst because it was so draining, I was out of work two months, I felt at times like I truly was going to die, etc. But recovering from that with about 9 years of faded memories, wasnt as hard as this. Not because it wasn't hard, but because it was more linear. I would be a little better every day. This was not better every day. It was forward, back, new symptom, old symptom I thought was gone. Now it's the excruciating headaches. Good days are awesome, though. Totally thankful for that, but wonder if that's part of why I have such a hard time accepting it. I feel really good for a few hours, or even a few days and then I get that taste of what life used to be like...and then it's gone. So it's not like all of my life is the "new normal" it/s more like an uninvited guest who won't go away and screws up all my plans.

I sincerely appreciate all of your input. I won't lie, I've never made any bones about it. I do love my old life and I want it back. I thought a lot about what you said, Macca, and I think the reason I feel that way is not because it's moving into a newer, better chapter of my life, but it feels like I had regressed. Background: I used to be about 100 lbs heavier. I was a couch potato; not lazy--I've always been super busy, but not physically active. In 2002 I decided to lose the weight once and for all and did it via Weight Watchers, but more by changing my entire way I felt about myself, and my outlook on life. (No, I wasn't angry before, but I had self concept issues very common to obese women.) In 2003 I had a pre-cancerous pancreatic tumor not remotely related to my health, good or bad. I had to have a pancreatic duodectomy, which is one HELLUVA procedure. I felt so bad during my recovery that I swore I would never, ever intentionally put my health at risk. After that I learned all the things I needed to learn to live life on my terms. I learned to say no. I learned to appreciate every moment. I lived more in a day than I had in months before. When I had my SAH it came out of the blue (as you all know) and it felt like it knocked me back into 2002 where my physical body was hampered by dis-ease. So that's kind of where I'm coming from. I know I'm lucky to have more energy than others, and I am very thankful for that. In fact on a good day you can hear me say out loud more than once, "What a blessed day! Thank you Jesus for this day." On a bad day I remember that I am alive, and that I am well some of the times, and I am thankful for that. But, and here's the rub...I do not want to think that I now have to "slow down" when I felt like I was just really getting the "take a bite out of life" thing. I think that scares me. No, I know that scares me. I am 48 and could conceptually live another 48 years. so when I feel good, I do everything I can to get as much out of the day as I can. When I don't, I lie down, I cancel plans, I rest. I have not found any correlation between a day of busyness and the onset of a headache. They are very correlated with weather, but not activity. I don't need to slow down, but I do need to accept that sometimes my body gets to override my head or my heart. It's the acceptance that I'm not to yet. However, I worry that if I give into acceptance I will lose a lot of the color and joy from my life.

Casey you are mistaking frustration for anger. I am not at all an angry person. Am I frustrated that despite the fact that I lead a healthy life I had an SAH? Yes I am. Am I frustrated about the ongoing issues I'm having? Sure. But the real me is as Pollyanna as they come. Outside of this my life is really everything I want or need. I have a wonderful husband who is my best friend, and has loved me through thick (about 100 lbs thicker) and thin, I have my dream job as a teacher, I run a business that helps others reach their goal, I have five dogs that make me laugh daily. So your assessment is nowhere near the mark. I'm sorry that anger has played such a big role in your life. I am thankful that I do not deal with that (and I am not being faceatous). Even the most mellow fellow in the world sometimes wants a safe place to vent. Please allow this to be a safe place and try not to be too judgmental when someone's experience is different from your own.

I remember about two months after my SAH I asked a friend who also had an SAH (we are both in the same running group and she posted about having had one and I friended her on FB) when she felt like herself again. At that time she was about 9 months out and she said "I still don't feel like myself." Now I am almost a year and a half out and I am MORE myself than before, but not who I used to be. I will be 100% honest; I am as Pollyanna, glass-is-half full, golly gee it's a great day to be alive as they come, but I miss my old life so much. I'm a high school teacher, running coach, personal trainer, and weight loss coach. My days sometimes start at 5:30 am and end at 9 p.m. and that's what I love. My husband and I would spend all summer getting into new crazy situations; okay mostly me and he'd take pictures. It was nothing for me to wake up on a summer morning, go teach two bootcamp classes, then say "Let's go out and bike the trail and do that ropes course!" burn about 1000000 calories making the most out of every day. When I first got out I realized I was very fortunate, and I really didn't want to believe that I had changed. I really was in a lot of denial, and I think it wasn't necessarily a good thing. I don't mean lie down and accept that your brain and body has betrayed you, eat bon bons all day, and cry into your Cheerios. I think, though, that I would have done myself a favor not to resume activies as soon as I did. I think it slowed my recovery and sometimes I do have a fear that maybe it caused some (please don't let it be so) permanent damage. Crying is normal, fatigue is normal, feeling like you get two steps forward and then take three steps back is normal. It doesn't mean you'll suffer constant setbacks, but you just have to let the day flow. I think it also helps to keep a sense of humor and maybe even a blog. I wrote a lot on FB (my life is an open book) but then when one "friend" replied to a frustrating post "Good God Tory! It's just a HEADACHE" I realized that maybe I was sounding like a whiner. (She became an un-friend immediately at that point because that was cruel.) I blogged some, and then the ones I felt like I wanted to share I'd post on FB. There were a few very important ones. I had to tell people to stop offering advice because trust me, I can run the Google machine all by myself, even with brain damage. (I teach IT, so I can run the Google machine better than most women my age.) I also had to post locally not to hug me because for awhile I had parasthesia and it actually could hurt when someone hugged me. I digress, though. So now I'm in a better place. Energy is back, but I do deal with chronic headaches. I try now to not plan ahead much, but definitely make the most of good days. Tuesday I had to leave work early and was in bed from about 11 a.m. until 5:30 yesterday. Yesterday I felt great, got tons done at work, did a bunch of errands, and then taught bootcamp, and my beginning runner class. Today was great until about 12:30 when a nasty looking storm brought a headache with it. So I've canceled my afternoon plans and am just looking forward to going home. Maybe tomorrow I'll feel great! Let's hope so! In short, it takes awhile to be 100% back but just do what you can to enjoy the good days, and let yourself relax and recover on the challenging days.