Fit and active people who've had a NASAH - how did your recovery prgress ?

[AnnieT]

Hi Riane,

How positive to hear the progress you have made.

I actually feel better this week and a little more positive - like I can do things and be more active. I guess thats the nature of the recovery - some weeks/days are good, some weeks/days are rotten. My mum says I sound better this week and who better to know than her eh?!

Have booked a couple of days in a spa hotel over easter for me and my partner - I figure we deserve it!

Annie X

[SarahLou]

Hi Annie,

Great to hear that you're having a better week.

Yes, mums know best, my mum can easily tell when I'm having good or bad days, she says she can hear it in my voice and see it in my eyes. We'll chat on the phone and she'll cut the conversation telling me she knows I'm getting tired.

Have a fantastic spa break, oooh how lovely. You both deserve the treat.

Hope to see you at the next Wessex support group.

Take care and keep smiling,

SarahLou Xx

[Guest]

I'm amazed at how quickly my recovery is coming along. I have been cleared by my specialist to return to driving and any other activity with the exception of heavy weight lifting, which I don't partake in anyhow. My stamina is not quite there, but can now comfortably walk up to 5 km, ride my bike up to 45 minutes. I hope to ski in two weeks, but will only take a late day pass for a couple of hours, just to try. I'll be sure to pick a nice sunny day to ensure no catching of edges. I'm at the two month mark as of yesterday. Feel like nothing ever happened, but not too stupid to think about jumping back in to work, etc. Still going to take it easy for the most part. May try golfing 9 holes tomorrow if not too cold. All in all, very encouraging. I am lucky not to have headaches, which I never had pre-SAH anyhow.

Trust this offers hope that recovery can accelerate and improve rapidly as I didn't see myself recovered three weeks back even. I did/still do partake in healing touch sessions. Perhaps this has helped.

Sue

[Teechur]

You have no idea how THRILLED I am to find this thread! I posted my story in the regular thread. Anyhow, I'm a long distance runner myself...70 marathons/ultras under my belt. I'm not fast, but I can run for a really really long time, and I love it.

Right now, not quite six weeks post SAH, I feel so frustrated. Sometimes I almost feel "normal". I'll go to a bootcamp class (I teach bootcamp 2x a week) and feel awesome, but then get home and I realize I've overdone it and pay for it the next day in spades. I work full time and wish there was a way not to, but I love teaching. (I work full time as a teacher, plus I'm a fitness trainer.)

It is so nice to see people talking about getting back. It's also a relief to read about the tiredness. That really freaked me out at first. I have never felt this kind of tired!

I am still using a walker, as I lost about 30% strength in my left side and sometimes my left foot decides to have a mind of its own, but even that is better already. Mostly I'm using it for energy conservation. At home I hardly use it, and as long as I get up slowly and don't try bounding across the room, I don't fall any more. I'm hoping next week I can say goodbye to Laverne, the walker. She's served me well (and she's pink and has a seat for my dog...which is awesome), but I'd just as soon bid her adieu!

Last week was my first week back to work and I made three days (Tues-Thurs). This week I made Mon-Wed and took today off with headache and exhaustion, but plan to go back tomorrow. Besides the running, and missing that I think the brain stuff scares/frustrates me the most.

[kpaggett]

Hey all,

loved reading all your posts!

I was on the elliptical pushing myself to increase my time. 5min...7min...10min...15min...17min...22min...etc... every week and then all of a sudden it hit! My quads felt like they were from the moon and my back, hip, and knee joints felt like they were crunching down and grinding. Whoa. It took loads of research and crying to finally figure out that being fatigued also happens in more ways than one! AND that muscle fatigue is very common for SAH sufferers. I took a week off and felt so much better - my muscles feel more normal (my joints are still an issue). I started yoga and finally found a way to condition my body that's not so gruntingly brutal. The basic mountaineer pose has really helped when tightening my quads a bit to release the pressure on my knees and that child's pose - awesome for the back. I have high hopes that I'll be able to get my joints back with this type of practice (and the meditative aspect is great too).

kudos to all of us that find interesting and creative ways of dealing with all the effects (and affects) of SAH!

A restorative break today wish for all.

~Kris

[Teechur]

Engaging the quads like that in mountain pose will definitely help with those knees. It also releases the hammier, and tight hamstrings can cause back issues. I am a trainer and I use yoga intermingled with strength training in my one on one sessions and in bootcamp.

Today I got a 2.5 mile walk in with my husband and *drumroll* NO WALKER! Tired...very very tired and it might have been a bit too much. Tomorrow is my running class (I'm the coach) and I'll be running the water stops for them all.

I am considering trying to find a tai chi class for movement and balance as I get a little further along in my recovery. Has anyone tried tai chi? I've had to give up karate for now and thought it might be an excellent alternative.

[Teechur]

First run on Sunday! My last run was the morning of my SAH, 5.5 miles. Used to run 40-50 miles a week.

Today's run; drumroll please...1.7 miles! Took a nap afterwards. LOL! It didn't "feel good" but it felt great...as in it hurt a little, the hyper-sensitivity to touch right now is driving me nuts and that bothered me, and it was hard...but it felt good because it told me that while I have a ways to go, I will regain that part of my life.

[amexdm]

Hi Folks:

You ladies are shaming me with all this exercise stuff. I am 7 months post SAH and don't have the energy I used to. I belong to a gym and used to do treadmill and some fairly heavy weight lifting. Well, I guess no more lifting for me. But I havent gone back to the gym yet. I get tired walking to the mailbox.

But I think after reading this thread that I've figured out part of my problem. I'm overweight. Not like crazy overweight but probably 20-30 lbs. I played football and have alot of muscle but have put on lbs as we do as we get older. But it appears that the fit people with SAH recover faster. It makes sense the better shape you are in pre SAH your body may reover better. I just wish I had the energy to work out. Working nearly full time is all I can handle.

But all of your stories motivate me to get fit and I will do so when I am able to. Congrats to everyone who is exercising and doing better. I will get there!

David

[Teechur]

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!

[Guest]

I was just cautioned by a good friend who has had multiple brain surgeries for a benign tumor condition. Her neuro told her to be careful of the false sense of energy we feel early on in recovery. I felt on a high all last week due to being back to independence by driving, cycling, golfing (not work, mind you - too soon for that as I deal with writing contracts, so must be careful). When my girlfriend (different friend) asked me to go skiing today, I declined, not just because the weather is disgusting, but I thought about my friend's warning. High altitude, all of that, so I am being responsible.

Anyone else understand this "high" I'm talking about. For those that are or have been runners, sort of like the runners high.

Sue

[kpaggett]

Hey all,

I get that high too. It's the same as before the SAH, but now it comes on immediately and exercising longer makes it soar. BUT...then you pay the next few days and not just in a physical way. Weird.

Love the yoga still.

~Kris

[amexdm]

Oceanside,

I understand what you mean by false sens of energy early in recovery. My SAH was in July and by November I was feeling good. I went to a few social outings and upped my work hours. In late November my wife was diagnosed with a serious illness and this set me back tremedously. I have yet to recover physically. So just be careful I guess.

My highs and lows are now on a daily basis. I might feel 85% at 11AM and 40% at 6pm. Not much fun. Hoping to golf soon but almost afraid my head will fall off if I swing too hard. Also concerned about lifting golf bag out of trunk, cart? Doc says no more lifting of more than 10-20 lbs.

David

[Guest]

Oceanside,

I understand what you mean by false sens of energy early in recovery. My SAH was in July and by November I was feeling good. I went to a few social outings and upped my work hours. In late November my wife was diagnosed with a serious illness and this set me back tremedously. I have yet to recover physically. So just be careful I guess.

My highs and lows are now on a daily basis. I might feel 85% at 11AM and 40% at 6pm. Not much fun. Hoping to golf soon but almost afraid my head will fall off if I swing too hard. Also concerned about lifting golf bag out of trunk, cart? Doc says no more lifting of more than 10-20 lbs.

David

I'm sorry to hear that you're going through another medical crisis, this time with it being your wife. I totally understand as my husband has been watching me go through cancer diagnosis when my SAH occurred. It's so much harder to watch loved ones go through serious illness than it is to have it. My two events have totally upended my family, friends and co workers. However, it's brought out the best in a lot of people close to me. My positive attitude to get through all of this has served me very well. The return to exercise has been instrumental in my recovery. I think.

Please excuse me, I have a little weird sense of humor at times, but I can't help but comment on the percentages you've quoted throughout a typical day - it sounds like the iPhone battery updates, depending on which one worked (or didn't work) for your phone. Let's hope you downloaded the right one and you can get through the day with % to spare before needing to charge. That's the one we're all after, right?

Sue

Edited March 13, 2012 by Guest
Typo

[Teechur]

I was just cautioned by a good friend who has had multiple brain surgeries for a benign tumor condition. Her neuro told her to be careful of the false sense of energy we feel early on in recovery. I felt on a high all last week due to being back to independence by driving, cycling, golfing (not work, mind you - too soon for that as I deal with writing contracts, so must be careful). When my girlfriend (different friend) asked me to go skiing today, I declined, not just because the weather is disgusting, but I thought about my friend's warning. High altitude, all of that, so I am being responsible.

Anyone else understand this "high" I'm talking about. For those that are or have been runners, sort of like the runners high.

Sue

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.

[Teechur]

Oceanside,

I understand what you mean by false sens of energy early in recovery. My SAH was in July and by November I was feeling good. I went to a few social outings and upped my work hours. In late November my wife was diagnosed with a serious illness and this set me back tremedously. I have yet to recover physically. So just be careful I guess.

My highs and lows are now on a daily basis. I might feel 85% at 11AM and 40% at 6pm. Not much fun. Hoping to golf soon but almost afraid my head will fall off if I swing too hard. Also concerned about lifting golf bag out of trunk, cart? Doc says no more lifting of more than 10-20 lbs.

David

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%.

[amexdm]

I'm sorry to hear that you're going through another medical crisis, this time with it being your wife. I totally understand as my husband has been watching me go through cancer diagnosis when my SAH occurred. It's so much harder to watch loved ones go through serious illness than it is to have it. My two events have totally upended my family, friends and co workers. However, it's brought out the best in a lot of people close to me. My positive attitude to get through all of this has served me very well. The return to exercise has been instrumental in my recovery. I think.

Please excuse me, I have a little weird sense of humor at times, but I can't help but comment on the percentages you've quoted throughout a typical day - it sounds like the iPhone battery updates, depending on which one worked (or didn't work) for your phone. Let's hope you downloaded the right one and you can get through the day with % to spare before needing to charge. That's the one we're all after, right?

Sue

Sue,

I know you have been through alot. You are very strong. I am a positive person as well. It is tougher to see someone else go through it. I can handle myself. I wish you the best with your cancer. My wife is being checked for ovarian cancer and has surgery April 3rd. We are hoping for the best. I have an MRI tonite after work. Hope they don't find anything. Thanks.

David

[amexdm]

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%.

Teech,

Thanks for your comments. The highs and lows are tough. What many SAH'rs call the rollercoaster. But is so hard to explain to people how you feel real good one day and bad the next. Especially the boss. Hope you feel better and think it's smart to not do too much (classes) right now.

I crashed and burned because my wife was evaluted for ovarian cancer in Novemeber. They have been testing her and she now has surgery on April 3rd. We are hoping for the best. I have an MRI tonite on brain. They probably won't find anything in there haha but DR wants one at 6 months anyway. Take care.

David

[janicegrewe]

hi all, I am new to this ,but i have had my hemorrage in december of 2009, in the ICU for 5 weeks, and therapy for another 4 weeks. I am alot better now,even doing zumba gold,which has helped with my range of motion and my balance.Still I find the anticipation of things is not there,I know I get excited about things,but the feeling of excitement is not there,does anyone know when that returns?I was happy to experince the return of my natural gait which I notice one day walking out of the grocery store. It surprised me,but made me oh so happy,since I did not realize that it was gone. I am from Michigan and I do not know of anyone near by with this condition.Other than having a shunt to relieve the fluid in my head, i am basically pretty good,the best part being, I have not had a headache in over 2 years!Is this a normal thing?It is reasurring to know there are others with similar issues.Any information would be really helpful!!Thank you,Jan

[Teechur]

hi all, I am new to this ,but i have had my hemorrage in december of 2009, in the ICU for 5 weeks, and therapy for another 4 weeks. I am alot better now,even doing zumba gold,which has helped with my range of motion and my balance.Still I find the anticipation of things is not there,I know I get excited about things,but the feeling of excitement is not there,does anyone know when that returns?I was happy to experince the return of my natural gait which I notice one day walking out of the grocery store. It surprised me,but made me oh so happy,since I did not realize that it was gone. I am from Michigan and I do not know of anyone near by with this condition.Other than having a shunt to relieve the fluid in my head, i am basically pretty good,the best part being, I have not had a headache in over 2 years!Is this a normal thing?It is reasurring to know there are others with similar issues.Any information would be really helpful!!Thank you,Jan

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.)

[janicegrewe]

Hi Teechur,yep I am doing really well,except for the little things,that seems to bother me. Sometimes it feels like I am looking out of a box..just waiting!Yep, it has been wonderful not having any headaches,since iI used to get them fairly often,atleast every week! Not having them is really nice! I think the shunt has something to do with that,or not, anyway they are now gone...if I were to get a headache now,I would really worry. People are amazed that I have had any type of brain problem,I do not remember much of the hopital,I just remember that when I was getting better,there were only milestones,no set backs!!Even with having breathing issues,I was sent to the right Drs. and I do not remember having any pain or discomfort,even when they had to remove scar tissue from my throat and put in a stent..stent is now out(!)...truly amamzing....i went in having breathing issues,came out being able to breathe...it was great!!I am so happy to have found this group!!I felt really isolated,since the only other 2 people that I had heard of having this,died.Not much help from them!!I feel truly blessed!!Other than the inconvience of having to deal with it,it seems like only good things have happened as a result!!!My middle daughter is a teacher up near Flint,she was and continues to be a big help to me,yep always the teacher!!My family is very suportive,which makes this easier for me!I just remembered,(this happens a lot)that someone wrote about their sense of humor,mine is really different now,I find lots of things funny now that I did not before,but as I go on,I find it is best to laugh than be angry,it tends to defuse a lot of situations!!

take care ,Jan

[Sandi K]

Hi everyone!

I've commented before about my confusion regarding exercise. When in the Pitt of fatigue is it good to push through and exercise anyway or does it only serve to knock you down further? I miss my workouts. In the last couple of months I've really squeezed all activity besides work out of my life because I just have no energy.

My GP brought it up during my check up appt today. She explained that no matter what, in her opinion I need 30 minutes of exercise every day. She said it keeps the seratonin levels up and keeps the blood flowing. By limiting myself to work activity only I'm mentally fatigued and she said I need to balance it out with physical fatigue and overall I will feel better. She said there are loads of studies that prove it. She wants me to start immediately despite me feeling exhausted right now.

There is other stuff we are looking at regarding my fatigue and she doesn't blame my fatigue on not exercising but she insists it will help. So I walked 20 minutes today as a start.

Sandi K.

[Carl]

Fatigue was something my doc and I discussed yesterday too Sandi.

Doc said to me, the fatigue from exercise is healthy fatigue. we dont want to push ourselves beyond that "Wow I felt good after my work out" once we pass that point it becomes exhaustion. I think more of us suffer from mental exhaustion than fatigue and we lump them in the same class. Tired Fatigued and exhausted.

We all need to balance . Just dont over do it.

[goldfish.girl]

Sandi, that is really interesting and I would love to know how you progress with it.

I forgot to mention that during my not so helpful appointment yesterday regarding fatigue, that the Dr suggested a gym referral. I explained that I had lessened the amount of walking that I do (time & distance wise) and that I had been, until my son got ill, swimming 3 lunch times a week doing 30 lengths each time. I had built this up slowly (and appreciate that 30 lengths may not be much compared to others on BTG). I did the swimming for 18 months and unfortunately it never got easy. I could barely walk due to muscle fatigue and struggled to get out of the pool & walk to the changing room EVERY time. I had several 'funny turns' trying to get dressed afterwards & a few occasions when I drove back to work and nodded & smiled when people spoke to me - they could've been talking to me in Russian as I just couldn't understand what was being said. The doctor agreed that a gym referral wasn't the answer for my fatigue as this would involve (as I already had done)increasing exercise and building up stamina to improve the fatigue.

I totally agree that exercise each day is essential to mental well being but I think it has to be something which does not leave you in a mess afterwards. Nicely tired would be good. Too exhausted to walk another step and needing a 2 hour nap is probably not so good.

Look forward to hearing how this goes for you, your experience may be completely different from mine.

Michelle xx

[goldfish.girl]

Sorry Carl, you posted while I was typing. In my experience the mental & physical fatigue are pretty much on a par with each other but I understand what your doctor said - they can be very different & easily confused.

Michelle xx

[winter]

I haven't posted on this thread before, but have been reading, all along. I definitely have to do SOMETHING 30 minutes a day. Stretching and walking have worked best for me. I can't seem to tolerate anything that is jarring to my head or joints (like jogging). I have noticed, though-like last night- if I am already a little fatigued, even the walking pushes me to the wall. I only made it about 1/2 mile last night when my legs became heavy and I felt I would have to drag them for each step. So I turned back and let the dogs drag me home! I felt so exhausted, that I could do nothing more than go to bed - and it was only 8 p.m., very early for me. I also slept for 12 hours, which is also unusual for me.

Exercise, like most everything else for SAHs, must be a trial and error thing until we've found the balance that works for us. Mornings seem to be the best times for me to exercise - I've had no real stressors yet, I'm pretty cheery and positive at that point. As the day goes on, the energy levels tend to drop and by evening - that dog walking can really do me in!

Good luck to everyone on finding the right stuff And remember, any movement is better than no movement.