Set backs?

[Teechur]

I read a lot, and hear a lot from my PT, friends who are nurses, etc. that I need to be careful or I'll set myself back.

This seems like a stupid question...but how do you KNOW what's too much? I mean I can often figure out what's too much AFTER I've done it and I'm drooling out the side of my mouth. But how have you learned to limit yourself and what happens in a "set back?"

I know I feel 2x stronger this week than I did last. This weekend I want to try to drive and lose the walker, but my husband is nervous. It's been just under six weeks and it wasn't a "bad" SAH compared to others.

[jess]

Hi there welcome to btg. I know when I had done to much because I would have a banging headache but everyone is different it may affect you some other way. Driving at the weekend have you been told you can drive 6 weeks isn't all that long so I would check and find out if I can first because if you haven't had the all clear and you crashed your insurance can refuse to pay out as if you haven't told anyone and haven't had the go ahead to drive you won't be insured. Look forward to chatting sometime. Jess.xxx

[garyolly]

Hey Teechur, Welcome to BTG.

In the immediate weeks following my SAH, i didn't feel bad at all so i thought that everything would be ok to start exercising again.

Boy was I wrong, after one short 6 mile cycle ride I was wiped, I felt bad for days afterwards. So I started from scratch. Two 15 minute walks a day, got to get the paper

That soon increased to 30 minutes, after a month I ventured out on my bike but was extremely careful. I did 5 miles and felt ok, so once a week that's what I did. After a month, I was soon at the stage to

go for a bit longer. 4 months after my SAH I managed a charity event of 42 miles. I took my time and stopped for fluids, rested when i needed to and everything was great. Yes I felt drained after but that was to be expected.

Just listen to what your body says and act accordingly, everyone is different, so we all have our own recovery stories BUT one thing we have in common is that we all have had our bad days, sometimes weeks. Learning to cope with what has happened is a very big part of the recovery process.

Take it easy.

[DawnS]

Hi Teechur,

I might not be much use here as I had a grade 4 sah, the consultant told my partner this was a 'significant' bleed. When I have done too much, i get a headache. If I ignore the headache and keep pushing, my head starts to ring. That's the only way I can describe it really. If I get to the ringing stage, I'm done for and not only do I have to stop for the day, but probably the next

day or so.

Dawn x

[Gill C]

With me its about withdrawal from whatever is going on around me, I become quieter & my smile is much more strained, The more tired I am the further inwards I reatreat. I'll then start to hit the fatigue 'wall' & get flu like aches & light headedness/woolly feeling, I start to lose my track of conversations & then lose words I am looking for. I know if I don't find a quiet spot to rest by brain says right no more & shuts down making me physically incapable of doins ng anything.

Now I know the warning signs I tend to head them off at the pass but if I'm too busy to notice it hits me hard. This happened at the last support group meet & by the time hubby picked me up I was wobbly & white & feeling pretty rough (I was also coming down with a bug which wouldn't have helped).A good rest/sleep usually sorts me out whereas a year or so ago it might have taken a whole day to recover.

[MaryB]

Hi Teechur,

I am 5 1/2 months post. Last week I worked my normal week at work without being OCD or having someone recheck me for mistakes. I was pretty proud, it was a busy hectic week but then I was in bed my 3 days off of work with migraine that would not go away. I had not rested as much as I noramally do as I felt I did not need to nap on my lunch hour. I am still finding it hard to balance with improvement. It is a hard act but I have found slow is better than over doing. I think for now I would throw my enegry in walking etc and than resting after that. I have had to listen to those around me to tell me I have done enough as I will often push it when I go to far and pay dearly for it. I always believed if I have the energy on a certain day I ought to use it all up wisely. Not so....I am working on not using everything I have at work and leave nothing for home. But it is hard as I am a natural hard worker.

Sound like you are doign great. The one thing this SAH has taught me is patience. It was like God was tapping me on the shoulder for years telling me to slowwwww down and then he hit me with a baseball bat to get my attention!

Have a great day! MaryB

[Winb143]

Welcome Teechur...

Like Dawn I had a grade 4 bleed....so I done hardly anything until I had a shunt fitted for hydrocephellus (Cant spell it)

When you feel well your body will tell you ....and your head !

Good luck in recovery

Love

WinB143 xx

[KelBel]

Hi Teechur

I have always struggled with this question... as you don't know you are overdoing it, until you have overdone it!

However, over time you will learn to recognise the signs that you are overdoing it.

I tend to get more sensitive to light than usual, more sensitive to noise, and a headache/burning sensation in the top right-hand-side of my head (my brain-burn). These things tell me that I am over-doing it and need to take some time out to rest and re-charge my poor brain...

I am now more than 2 yrs post-sah and as well as working fill-time, I:

go to the gym or do a zumba class a couple of times per week,

some days I go for 30min walks at lunchtime,

go to an art-class for 2hrs on a sunday evening (when I feel ok to do so),

attend a slimming club every Weds eve,

catch up with friends & family,

do washing, cooking, cleaning, ironing etc...

catch up with facebook, BTG and emails... and

am working on a painting for someone too!!

phew...no wonder that brain-burn happens daily!

Try to rest as much as possible, but push to do a little something extra each week if you can, and look back each month at how far you have come from the first few days back home after the event.

Take care

Kel x

p.s. it has taken 2 yrs to build up to being able to do all of this... initially getting out of bed, showering & putting pyjamas back on again was a full day!

[kpaggett]

My signs are weird leg feelings, slower speech, wanting silence, and a lightheaded or vertigo/dizzy feeling

and then I take just a little time laying down in a dark room and rest...usually not sleep...but rest.

~Kris

[Teechur]

Thanks everyone! That is very helpful. You have no idea what a breath of fresh air this is!

I get this halfway between "Am I just being careful or am I being lazy?" For example, I called off work yesterday after working 3 days. I could have worked, but I was starting to feel a lot of fatigue on Wed night so rather than teach bootcamp, I monitored and I stayed home Thursday knowing that I had more important things to do today. I teach IT classes and had to check off the kids' servers and virtual servers, which meant going around the room and being able to give verbal cues to check skills. I also have PT on Tues and Thurs nights and so far it's been good, but exhausting.

Logically and physically it was a good choice. Emotionally I felt guilty because I "could" have made it through the day yesterday.

Today I felt fabu, almost normal...headachy a little spidery in the head (that odd feeling that things are crawling on my brain), but excellent clarity. After work we walked a few miles out to dinner then back. But I can feel it now...so probably overdid it, but it's a learning experience. Still feel good about the day.

Oh and driving, my doctor cleared me to drive last week but told me to use my judgement. I honestly didn't feel I should these last two weeks, but I am thinking of trying close trips.

Edited March 10, 2012 by Teechur

[Sandi K]

Beware the roller coaster. The one thing I'm consistent with is remaining on the roller coaster. When I have good days I rapidly slip back into denial that I ever had a NASAH and forget to pace myself. I quickly start adding stuff to my routine and tell myself that feel normal and I have feelings of joy! Yay- I'm cured!

And then slam. The fatigue knocks me over, all the weirdo symptoms creep back in and I start thinking I'm depressed when really I'm recovering from a brain injury and I've overdone it again.

When I meet with my rehab therapist this is what we focus on. How do we get Sandi off the roller coaster. Pacing ourselves is the trick and it's a delicate balance to find what's right for each of us.

Sandi K. Xoxoxo

[winter]

Another great thread!

I too, am consistent with being on that roller coaster!!! A little more than 2 years post sah, I am still looking for that balance.

When the "set backs" do come, it seems they are with a vengeance! I get weepy, irritable, headaches, my lower legs and feet swell , have trouble focusing and finding words, and the fatigue hits. I do know that "while" I'm overdoing things, I usually feel pretty good - and like Sandi, think I'm back to normal. Then the "ride" begins again and usually lasts a couple days.

For me, knowing when enough is enough, is still somewhat of a process. I still tend to plough right through, until I hit that wall and can go no further. Unless I try something, I feel I will never know what my limits are.

And even then, I will keep at it - thinking maybe the next time will be better. So, I'm still learning to listen to the signals telling me to slow it down!

I've always been a bit rebellious and have to learn the hard way.

Yesterday I re-read "A Letter to Your Brain". I've read it many times before, but it really hit me hard yesterday - that I've been expecting a complete return to the old me, comparing myself to what others' have achieved, never really giving myself a break and that I'm still in a bit of denial (who knew?!?). So, for today, I will listen to my brain and rest when I need to and be kinder to myself. Maybe if I start each day with that thought, the set-backs will come fewer and far between!

[janicegrewe]

Everyone keeps saying they are waiting to "get back to the way it was",i think this even we have shared gives us a new direction,so our stamina is not what it had been,so i guess then it is time for a new slower paced hobby. We farm and I really do miss helping out with field work,althought THIS year i am going to try to help work the ground,we'll see how long I can go...if not a whole day ,then I'll do what I can and that will still help. So I am waiting for the weather to dry to do this !!This year seems way better than last year!I had no desire to garden,which I love,but this year I am excited to try again!!I hope we are able to come to terms with our issues and find joy in what we can do...we DID survive!!Think a new thought today or even an old one,that we think is new!!Good luck everyone!Jan

[Teechur]

It's interesting reading back on this. I posted about a month ago and honestly, I am STILL having a hard time knowing what "overdoing it" is.

Sandi, you are I are so alike. I'm SO on a roller coaster! Today I feel good so we walked to lunch and back, and I even jogged a little. Now my head hurts and I have a few "neuro" symptoms (spider-brain, but not bad). Yesterday I had such a bad headache I could hardly function from the afternoon on. We went to a movie and I intentionally closed my eyes to sleep during part of it.

I just want a string of good days, or even "okay" days. What I'm getting is one great day a week, a few "meh" days, and at least one or two really lousy days. The thing is, on the good days I want to do it because (as I was explaining to my husband) if I don't take advantage of those days, but instead say "Must rest today so I feel good tomorrow" and then I have a good day tomorrow but didn't do anything enjoyable beyond watching TV or reading a book either day...what the heck is the point? I'd rather have a fun day even if I pay for it the next day.

It's Spring break so at least all I have to worry about is just day to day hanging out with my husband, making a meal or two, and resting when I need to. Back to work next week!

[Sandi K]

I understand the philosophy that it seems such a waste of a good day if we rest! I make the most of them and try to do a bit of catching up on stuff and have fun while it feels good. The bad days are about slogging through until I can hit the couch. The okay days are about going through the motions and getting through the routine without bringing on too many symptoms. The good days are for celebrating and making the most of! It's so hard not to think that way.

Sandi K.

[MaryB]

Teechur hahahaha...........I worked like a dog, went to yoga and did swimming the past 2 days. Today it was a killer at work.

I need a string of good days every 8 days or so or I get depressed. funny thing is when I feel good I think I am cured. I fall for it ALL THE TIME. With the fibro it falls the same way as this recovery. Sometimes I can't tell the difference but I am starting to see more fibro symphoms (SP) now since I do not rest all day everyday.

[Carl]

This is all sinking in a little more every day.

About 8 months ago I was ready to take on the world. I think I overdid things a little.

Some days I wonder if it is all in my head Well thats the cause of the problems isnt it!

I have to admit there are more OK days than any others. Every now and then the old Carl pops out and I feel awesome.

Lately it has been a struggle. I need a gumball machine that dispenses pain killers for my headache. I used to say headaches but this one lately has been relentless.

I am pretty sure it is stress related, since it came on at work after a discussion with a non favorable outcome

I have a 4 day weekend, followed by 3 days of work and then a vacation. That will help.

I do agree enjoy the good days as much as you can. I know that even going to a movie can be a decision. Something most people take for granted. When I do feel up to going I sure hope it is a good movie

[Teechur]

I agree, Carl. Movies can give me a headache and it's never just the movie...it's get there early for a good seat, and then wait through the previews, finally the movie plus there and back.

Today is kind of a 4 on a scale of 1 to 10 with 10 being an awesome day. It's not horrible, but my head keeps singing and I don't feel all the way together. I do feel good to bake, though. I have PT later today and I'd like to be able to do it. Tuesday he took one look and worked on my neck instead (when my head hurts I tend to get super tight muscles because of bracing against the pain). I was doing some PT at home, though. Balance is better today.

Do you guys still get really light headed? I get it badly when I stand up and start walking without thinking.

I hate to say I'm glad to hear how others are experiencing the same thing, but after seeing my neurosurgeon on Monday and her wondering why I'm not all better, I've been second guessing myself.

[Winb143]

Christmas 2010 I could not even walk.....Christmas 2011..Zimmer frame nice pressie lol..2012 stick on hundred yard walks

But I was told I would never walk again !!!.....

We are getting better....just look back to how we were....So after 3 lets scream Yeahhhhhhhhhhh we beat it !! almost..and we wont let it beat us NEVER EVER !! Now Smile xx..Teech I also get the giddys..ie feel wonky lol

Love to you all

WinB143 xxxxxxxxxx

Edited April 5, 2012 by Winb143

[goldfish.girl]

Hi Teechur, the light headed feeling when I sit up or stand up still happens but has got so much better over time, I'm sure it will improve for you too.

Apart from the head pain & fatigue the only other thing that has never gone is the feeling that you are walking on a bouncy castle but all of these got a bit better & I hope that one day they will be gone altogether!

Michelle x

[Winb143]

I agree with you Jan....sensible post... we have survived be it with a limp or dodgy headaches but we are

still alive .....I am looking at my hubby and I feel sad for him so better talk to him...and give him my headache lol

Take care

WinB143 xx

[Teechur]

There is a blessing in the experience, isn't there? In 2003 I had to have a Whipple Procedure to remove a precancerous tumor in my pancreas. Long story short but through a series of happenstances it was found and had it not been, I might not be here right now. The recovery was horrendous and long but I still consider it the worst and best thing that ever happened to me because it gave me a new appreciation for my health. I had just finished losing 100 pounds just prior to the discovery of Hank, the tumor. I really feel that that experience truly showed me, in a very real and emotional way, the blessing and gift of good health. It's a lot of why I've been so much more dedicated to my own health, and helping others regain their health.

So I know that as I experience this, there is going to be more and more blessing revealed. we are blessed to be able to do more this week than we could last week, and maybe in a year this will be another best thing in my life. (I'm still in counting weeks as its almost ten weeks.)

[kpaggett]

Hi all,

I totally can relate to the slightly bad feeling on most days and then Kris rears (her head) for a short time and then she assumes that she's cured. What a dope that Kris is. She's got to get with the reality of things. I even made a Kris Scale up...not for how am I feeling today, but how much like Kris do I feel so I started at 0 out of 10 because I felt like two people for a while and couldn't look in mirrors and now I'm at about 8.5. I want so desperately to get the rest back so that when I see it, I try and go with it and sometimes this means overdoing it. Sometimes, I can really pace it and savor it in a slow activity like sitting out on the porch. But this isn't very easy when Kris thinks "I want to get going again...I'm finally cured!"

~Kris(me)

[MaryB]

Kris, "Hello My name is Mary I am an Over Doer"

Yep, I over do or I feel if I am under doing. I have always been this way makes me crazy. I want a clone to sit home and be good mindful mary and let me be wild crazy working circle around people mary. The good day are great but the days in between really suck sometimes. I love the great ones as I do think I am cured.

[kpaggett]

Mary - I don't know about you, but I've been trying to plan out as much as possible and that seems to ease the tension. I used to tease my dad because he always wanted a daily (sometimes hourly) plan for what to do; even to the point where he eats certain sandwiches on certain days. I was a fly-by-the-seat-of-my-pants sort of person...now I understand about needing a plan for the day/event. Since this was never how I did things before SAH, it is so hard to remember to do it now...but it really does help to pace myself better. Maybe I'll get better at it as I go along? It's so hard to start a new life approach when you really want to do it, it is near impossible it seems to do it when it's forced upon you.

~Kris