Newbie six weeks from SAH

[Teechur]

I hope it's okay to join...I'm here in the US and it's been so frustrating to find information on SAH.

I had mine on January 28. I was at a movie theater talking with a friend in the lobby, I turned to walk into the theater with my husband and suddenly WHAM! I got the worst headache of my life. I've never been a headachy person, so I was surprised. We went into the theater and I sat down. The lights were about making me want to scream, I felt like I was going to throw up. I sat head down, hands over my ears and kind of whimpered. My husband said something and I almost said "Take me to the ER". I heard him again and he said "Do you want me to take you home?" and for some reason I thought "Okay...but wait, I can have a headache here or a headache at home and at least then he can enjoy the movie." (He would NEVER have hesitated for a moment if I'd said yes.) Fortunately there weren't a lot of explosions or loud noises in "The Descendants" (although it was haunting later on when I was in the hospital).

Fast forward about 6 hours later and I finally (after trying to sleep off the pain) posted on FB (after turning the brightness almost all the way down on my computer) "I have the worst headache I've ever had. Do you think it's a migraine?" A friend, who is an EMT in New York, text-bullied me into going to the hospital, so I went out and asked Roy (the husband) to take me. Even after I went in I felt like an idiot, thinking that I was overreacting. I sat in the ER with a hood pulled over my head like the unibomber and kept wanting to say "Let's just go."

I was in the hospital for 19 days with a non-aneurysmal sub arachnoid hemorrhagic stroke. The hardest part, at the time, was when the doctor told me she'd be keeping me 10-14 days because I'm EXTREMELY busy. I am a full time high school IT teacher in a technical high school. I run a small business as a personal trainer. I had just started FIVE fitness classes. I have no employees so it's all me and any intern who needs a spot to learn the ropes. I teared up because all I could think was, "I don't have time to be in the hospital!"

I was in a LOT of denial. I literally thought I'd bounce out and get right back into running. I don't recall much from the hospital, but I THOUGHT I was fine and any funky feelings were due to all the medication. They had me on. I remember having horrible spasms and bad headaches.

Prior to this I would get up in the morning at 4:50. My husband and I would work out (okay I would MAkE him work out). I'd go to work as a teacher, come home and run 4-8 miles and then two nights a week teach an awesome bootcamp. On the weekends I coach two running classes; one for new runners so I'd run 2-3 miles with them, then one for marathoners/halfers and I'd run from 10-20 miles with them. Sunday often a race, or Saturday and Sunday a race (marathon or 50k or both). I slept 4-6 hours a night with no problems. At night while watching TV I'd work with one-on-one clients (I do weight loss support for clients around the world). I'd check food journals, set up websites, talk people out of the cookie jar or cheer my brains out for weight loss.

I'm used to having 10 balls in the air at a time. I love LOVE my life. I have a fantastic husband, I am a good teacher, wonderful wife, have a ton of awesome friends, and I had at the height of my fitness, a SAH stroke.

Six weeks tomorrow (Saturday) from my SAH. I am still dealing with headaches (although they are getting better this week...they're still nasty). My brain feels like it "short circuits" all the time. Multi-tasking? Forget it. Exercise? Physical therapy wipes me out (although I'm still teaching bootcamp...some days I can mostly keep up but other days I have to just supervise the class). No running at all. I am walking when I can, but most days I don't have the energy to even do that. I'm learning my gas tank is about 1/4 of the size it was. Even if I feel good, the next day I'm ready to pass out.

I went back to work full time the week after I got out of the hospital and I know it was too soon, but it's a bell I can't unring now because I had to have sick leave donated for the hospital stay and HR won't award me any more (even though I had more than enough donated to me...we're still fighting it). I don't know how to slow down gracefully and bow out of things I'm dealing with.

The support from friends and family is absolutely amazing. I am so blessed. I get that I'm blessed to be alive. I understand it could have been worse. But I'm having a very hard time accepting this "new normal". I want to know how long it will last (I know no one knows that for sure). I am tired of feeling like I'm not really "me". I worry about how long I can depend on the kindness of others. I miss driving, but worry about how tired I get and my brain "rebooting" while driving in traffic. I want to run...I had a goal of a 100 miler and half ironman this summer with a full IM next.

I feel like I'm whining and that makes me feel guilty. I'm home from work today because I'm tired, have a headache, and when I evaluated what day I could miss better; today or tomorrow, I realized I need to evaluate the skills of my kids tomorrow so I'd better be there to make sure they're where I want them to be. That makes me feel guilty. I want to talk about how I feel, but don't want to sound like a whiner. A lot of this has been completely fascinating, some has been wonderful, other stuff has been maddening. I'm just not used to being "tired" like this and I'm still learning how to go about my day without using up all my gas.

Anyhow...that's me in a nutshell and I am so happy to find others dealing with this and am looking forward to insight and wisdom!

[Guest]

I'm a new member here too. Same type of bleed, similar length of hospital stay. I'm two months out now. My NA-SAH was on January 5th. I want to let you know I had a lot of the same thoughts upon being released and had the bad headaches. I found that it was good to research the area of the brain your bleed affected. Mine was the right parietal lobe, responsible for sensory tasks. I then understood why I was experiencing what I was, but still, no clue as to how long these symptoms would last and when I would get back to "normal". I was feeling trapped and alone as I couldn't drive due to visual problems. Well, I need you to know that I did recover almost to 100% and most of this recovery took place between the sixth and eighth weeks. I'm back to most activities and driving. I have been advised not to do any heavy weight lifting for one year, but can resume all other activities as I see fit. I'm lacking some stamina, which gets better each day. Today, I walked for 40 minutes and golfed 9 holes. I am back to cycling and am going to do a half day skiing next week.

You are back to more than I was at six weeks, so maybe just go a bit easy for a while and let people fuss over you. Milk it!! I look at it this way. I survived the ordeal and had my life handed back on a silver platter. All remaining days are gravy. Life is good - I call it my "stoke of good luck". Weird, I know, but I view life so differently now and a new normal has been born.

I found the following helped me a lot - physiotherapy and healing touch. Also, the community that gathered around and made meals for us three nights a week and housekeepers were sent twice. This allowed my husband to return to work as I needed care the first two weeks I was out of hospital.

Keeping positive was crucial for me. Hope you're on your way to better days real soon. PM me if you want.

Sue

[Teechur]

Thanks Sue!

That is so good to hear. I feel like I just rambled in my intro mainly because it's so hard to find someone to TALK TO about this! I had a great PT session today. I started out doing some of the neuro stuff and a lady jokingly gave me a hard time because my exercises are so "easy". I know she didn't MEAN to be so thoughtless, but right now I feel like half of me wants to NOT let people know what happened, but half of me wants to wear a button that says "Not firing on all pistons so be nice". I think that's what's hard...people tell me I need to take it easy, then they ask me to do 15 things for them and if I can't they act like I'm letting them down.

At any rate...the session was good. I could do things today that I could not do a week and a half ago. Strength is much improved. Balance is still off but better than it was. I'm not stumbling as much. He's going to give me exercises for my eyes, which is great!

I honestly thought I would get out of the hospital and go right back to life. Unfortunately I think I gave that impression to others too. I'm just hoping I can get through the next few weeks and into spring break, relax and recoup, and then make it to summer!

I've been calling mine my stroke of genius! And yes, I do feel very fortunate. I think I'm still in the overwhelmed state, though. I'm not used to feeling that way...but I know it won't last forever.

[kpaggett]

Teechur,

First, Welcome, I loved your story. Thanks for sharing.

I'm further along in time to you...7months. I wanted to rush into getting back to 'my normal self' too right at first, but then it hits you...you're not your normal self and you have to be kind like you would to any other person or even student that was going through a big traumatic event. SLOW DOWN. Yes we want to get all that we can back, but the professionals are not inside your head/body/mind/spirit and neither is anyone else. I found that my physiologist really didn't know a whole lot about SAH, but more about other types of stokes and she actually didn't tell me that fatigue sets in in many ways...not just sleepily-like but muscularly too for us. Not her fault, she didn't really know. It's better to go slow than to find yourself back tracking because you're legs can't take it anymore or you forget to do your finances for the month because you're too stressed at work.

Oh, and once I dreamed that I made up my face with one eye done up with huge fake lashes and strange blue sparkles and the other side of my mouth with bright read lipstick just so everyone would know that there was something off. SAH is very elusive and often you wish others would know and then you turn around and wish everyone would stop asking you how you're feeling.

~Kris

[paul99]

hi girls welcome to btg you all need to listen to your bodies many on here have gone through what you are all going through and will come on later and chat to you but the common theme is the fatigue and tiredness please take one day at a time please there will be good days and bad im pleased you found us and you are all making good progress and that you have survived which is the most important thing others will come on later and give you more information and support i wish you good luck in your recover which will be different for each of you listen to your body and keep the fluids up good luck

[Teechur]

Thanks! Yes, that was one thing that hit me...my doctor has never had the experience and so even though she can give me time frames, the ones who have been the most helpful are people who have either had this experience, nurses who have worked in neurology, and my PT (who has worked in neurology and with a lot of stroke patients).

Today was SUCH a good day! i had clarity today I haven't had since pre-Spidey. I was able to get so much done! I know tomorrow might be different (I had a few hours of good clarity last Sunday night), but at least it feels like progress. I even got home with energy to spare. My husband and I walked out to dinner (without a walker, yay) and got in 2.5 miles (he held my hand so I didn't fall, but really I think it's about time to say adios to the walker). I am now pinging all over the place and very fatigued, but at least I know why! (More fatigued than I normally am after running 20 miles, but that's okay...it'll come.)

This site gives me hope and there is NOTHING more blessed than a good day! I don't even mind that the walk home was in the rain!

[debbieg]

I had my Non-Aneurysm SAH a day after you. I was in hospital two weeks. Since coming home I'm still trying to work out where my brain is on any one day. Sometimes it's good sometimes hopeless. I am lucky I have my own business so I can sleep or rest in the afternoons. I feel bad that you didn't get more paid leave. I see you have a dog and I have found short walks with mine really therapeutic. Although now I need a lift everywhere even to take the dog somewhere nice. It's hard when you are so independent to become so dependent. Like you I am so glad I'm still here. I'm glad I only found out when I came home that 50% don't make it after a SAH. I don't know about you but I worry it will happen again every time the headaches are bad. I found just telling my husband and daughter that I'm going through a frightening moment helps. How are you coping now seeing as you are probably at a similar stage to me? By the way what breed is your dog? I have a soft coated wheaten terrier called Toby. Keep walking (not running) on the road to recovery and I hope we both progress ever onward over the next few months (and probably years). Debbie xxx;-)