Set backs?

[Carl]

I used to have a great memory. I was reading this post and thinking to myself I should write something, then I see I already did LOL.

I have confirmed that stress is the biggest cause of my headaches and this morning I was enjoying the routine I go through each morning.

I get up and feed the cat, make the coffee and take my pills. Then I have breakfast and make lunches for the day.

This is a constant for me. It does vary on the weekends, but then there is no need to rush with anything.

I find when simple plans go off the tracks I get headaches and feelings of frustration. That never used to bother me. I loved solving problems, I was also a person who juggled many projects at a time, although I seldom finished any. Now I am finding a greater satisfaction in completeing something more than starting something else. That is an SAH plus:lol:.

[Teechur]

I had to read yours five times Mary because I kept reading "I'm a doer overer" like you have to do everything over, even if it's done right. Could not get my Spidey Nibbled brain around it. (Having a "spiders are eating my brain" day along with crawly head.)

I am finding that in the last few weeks, where I feel I've seen very little progress, I am getting more and more angry with myself and my feet. I stumble and swear, I drop something and swear. Yesterday after PT I tripped on the way out to the car and just got MAD. I've got to stop doing this. I've always been a passionate person, but I'm not prone to anger.

Did all ya'alls have starts and fits? I feel like I was going up and down, but getting better but the last three weeks I feel stalled. Fortunately I'm pretty functional but it's just frustrating to say "Okay it's Tuesday and yup, here comes the headache!!" Still having maybe one "good" day a week, a few "Yeah, okay feeling okay" days and three or four "somebody shoot me" days.

Kris I love that...I feel about 90% me most of the time with variations and a few 95% me days (I've had 3 or 4 so far).

I'm trying something new because of how things aren't progressing. I've tried the resting, I've tried the not resting. Resting doesn't seem to help a lot (on days I feel good) so I'm modifying my normal activity so i am enjoying life on good days and on meh days, and trying to rest on bad days. Now I know today I should rest, because I'm feeling it big time, but I have a guest speaker and I'll get grades in while he's talking. That will free me up to possibly be gone tomorrow if I feel I can't drive. And like magic, he just walked in!

[Sandi K]

Teechur, I giggled at 'somebody shoot me', been thinking that myself all morning. Despite feeling so exhausted and down I never lose my sense of humor - so very grateful for that. Im sure you didn't even intend for it to be that funny but it struck a chord with me and you got a giggle.

At about 16 weeks post SAH, around the time I got super emotional (lots of tears) I also caught a bad case of the dropsies. For a few weeks I was dropping everything. Emptying the dishwasher and cutlery would fall out of hands. Handing something off to someone else and it would drop. At the same time I was stumbling over my own feet. Tripping over nothing. Once I fell over in my living room, I had been standing still! I didn't faint, I just fell. It was a coordination thing or lack of spatial awareness. Also at that time I would be laying down on the couch or bed and feel myself falling. Similarly to the dreams people have of falling and then jerking awake. I would do that while watching TV. I can't remember how long this period lasted but it wasn't more than a few weeks. Some of the stuff comes back if I'm really worn out but not all together and it doesn't last long.

Sandi K.

[Teechur]

You must always read everything I write with a smirk on your face because I am a Very Serious Person.

My sense of humor...our collective senses of humor...get us through these things without going bat-poop mad!

I have a big black Spiderman on my overhead today with a note that says "Spiders are eating my brains" so my students come in and know to behave or I will kill them.

[amexdm]

Teechur,

Apparently great minds think alike cause if you check the Back to Work thread on Monday, I said "Just shoot me". Monday my legs felt like 100 lb weights. Apparently somebody did shoot me because Tuesday I couldnt get out of bed and called in sick. I guess they shot me with a tranquilizer gun . A little better today but not much. Don't really have many "old me" days anymore but someday....

I played the rest/don't rest game early on too. It's fun. I concluded that if I feel good or have a good day I do something and if I feel tired I rest. It works pretty good.

Hope your day was better.

David

[Skippy]

David hang on in there - those "old me days" will make an appearance at some point and when they do relish them and remember them because they'll help you get through the not so good days - the brain will crave the "old me days" for a while and then (like stopping smoking) it'll let the new you take over and things will ease as time goes on until, maybe just maybe, the old and new merge and you'll find that David mark II is an even better model.

I certainly prefer the post SAH me to the pre SAH me and I've made allowances for the things I can no longer do and realise that its not the end of the world but the beginning of a new life.

Hang on in there x

[Kazroz]

Thanks for those comments Skippy!!

It made me feel good because I believe the same thing! Better post SAH. It is taking me some time to work out but I think you are better. There has been a "sort of miracle" You survive a traumatic experience but you get the opportunity to reflect on what is important in your life and you have the opportunity to spend time with what's important

You weren't bad before. Youre not bad now!!

Let me explain. I was a busy assisstant headteacher who worked long hours to help children achieve. I loved my job! My family didnt see much of me. Now they see me all the time. In the 1980s to be successful as a woman life had to be dedicated to work and everything else had to fit in. Now MY LIFE is dedicated to my family and I am LOVING it.

Its me who has got back in touch with all the family, we are all loving it, we never fell out, the years just drifted by because we aere all so busy. Now I dont give them a chance. I do all sorts of things to keep the bonds we always had present and in the news!!!!!!.

I gave 28 years of my life to many, many children who needed me!!

(no regrets by the way-positivity needed)

Now its time for my own children and family

Adjustment is the Key but it needs to be Positve adjustment

Many many regards

[Guest]

David hang on in there - those "old me days" will make an appearance at some point and when they do relish them and remember them because they'll help you get through the not so good days - the brain will crave the "old me days" for a while and then (like stopping smoking) it'll let the new you take over and things will ease as time goes on until, maybe just maybe, the old and new merge and you'll find that David mark II is an even better model.

I certainly prefer the post SAH me to the pre SAH me and I've made allowances for the things I can no longer do and realise that its not the end of the world but the beginning of a new life.

Hang on in there x

I totally agree. With my health challenges I've had an opportunity to press the "reset" button of life.

One more battle to get through, then the new and improved Sue will be off and running...

Sue

X

[goldfish.girl]

Kazroz, I loved that post - thank you for sharing it!!

I am now a full time mum to my wee boy who also has a brain condition & learning difficulties. I love being here for him (after fitting both my children in around my stressed out working single mum life for 23 years). I would not have chosen what happened to me but, you are absolutely right, it has brought some great positives.

The worry over finances in the future is hard but the happy times being here to see my little boy off to school in the morning & being here to welcome him home are an unexpected gift. Before SAH he went to Breakfast Club & After School Club (I dropped him off & picked him up, always stressed out & watching the clock). With his difficulties interacting socially this was always very hard for him, I knew that but how do you ever leave that trap unless something makes you....

It's lovely to see such a positive spin on SAH - thank you!

Michelle x

[Kazroz]

Thank you for your comments!!

It makes the effort truely worthwhile. Isnt it amazing how it takes something so awful for us supposidly intelligent brain leaders (!) to appreciate those that are closest to us.

The Modern World?

Equality?

Making Changes?

All vastly important but sometimes accepting you have done your bit and now its time to hand it over to colleagues and its your time to have with your own family.

Sorry to be biased important to all but VERY important for teachers to take on xx

REgards to all

[kpaggett]

Thank you all for your posts.

You'll never really know how you've had an impact, but you do have a big one on me...thanks.

~Kris

[Teechur]

I hope I get to that place, but I'm not there yet mainly because I don't have kids and right now my ability to be there for others is so limited. My job as a teacher makes a difference, but right now it's a struggle to get through some of my days. My job as a personal trainer and weight loss coach makes a difference in people's lives, and I miss that impact (although I'm still doing it).

I need you guys to be up because today I'm down. I am on day eight of an intractable headache. I am so fatigued. I sat through an in-service that was REALLY good today and got all these great ideas, but feel at a loss to implement them. I feel like I've had no improvement in the last three weeks, or at least no discernible improvement and I feel responsible for it. I'm ****** that at the end of sitting all day I feel tired and just want a nap.

I see a neurologist tomorrow (I was seeing my neurosurgeon). I hope he has some answers, but I fear he won't.

I just really do want my old life back. So far the new life is not very much fun. (And part of it is I AM SICK OF BEING A WHINER!!)

[Sandi K]

Hi Teechur! I hope you are feeling better in the morning.

Hopefully the neurologist will be able to explain some things and help with the headaches. 8 days of pain is no fun. I don't blame you for wanting to be finished with all of this. I used to tell people that I just wanted to step into the shoes I was wearing before my NASAH and carry on as if it never happened. You are doing amazingly well though considering all the activities you have on the go. I think you work more hours than me, you are managing your business without skipping a beat, you fundraise and participate in sporting events on the weekends, and you even manage movies on weekends. That's incredible for how early you are in recovery. Pat yourself on the back, you are one tough lady!

Sandi K.

[kpaggett]

It really is so hard when you have a stretch of bad symptoms that seems endless. The implementation thing that you mentioned Teechur I find happens to me all the time. I want to do it, I think it would be fun, but in the end...I just can't.

I've let others know that no matter if I want to do something, you should probably ask someone else instead. My motto for this year is to become one of those people I used to hate...talk about what needs to be done, but let someone else actually do the action-plan. So far, if I can remember the motto, it works.

~Kris

[amexdm]

Hello,

Not real happy today. Yesterday I felt the best I have felt in 3 months. I have been resting and trying to take care of myself. Last nite my wife and I went out to dinner and then shopping for furniture. We had been putting off shopping due to both of our healths. We went in and found a couch, chair and two tables we liked in about 15 minutes. We decided to buy them. It then took the salesman almost two hours to write up our order and finalize the details. He must have asked for my wife's social security number five times and kept asking our phone number to put in the computer. It was hot in there.

Needless to say, it friggin wore me out. Sitting in a hot store waiting. Oh, forgot to mention the super bright overhead lights to "showcase" the furniture. My feet hurt and headache. Now have to go to grocery store. One good day in 3 months? Sorry for being negative, just frustrated. Work tomorrow, hope I'll be ok.

David

[goldfish.girl]

Hi David,

Hmmmmm.....I might've grabbed him by the throat, wrestled the keyboard off him and put the order through myself by then!

Shopping is one of the things that I used to love. Now I find it incredibly hard & dread it whether it's for food, clothes, furniture or anything else. The lights, the people, the noise, the music all the goods on display - all of these overwhelm your senses and tire your brain out. But, you did it, you have new furniture to lounge on & recover (when it arrives!).

The good days get better over time as you learn what things will tire you out and what to avoid if you can. Some things can't be avoided but you learn the things that make a good day better and don't end it on a low by adding in something that exhausts you. My older son keeps telling me I need to shop on-line.....probably very wise words from a 21 year old......

Hope tomorrow will be another good day for you & you will have them more often than you have done in the last 3 months.

Michelle x

[MaryB]

Sorry David that was a long day when it should of been easy. But at least you will have that chore scratched off your list. I would of never been able to do that at 3 months. Tuesdays I am buying a stereo/ storage cabinet of some sort for my laundry room that also houses the stereo for the downstairs and outside speaker. A style that is a bit more unsual than what is offered. I have looked for a year. Tuesday is it, not coming home until I have one. I am with Michelle with that shopping thing. I save soooooooooo much $$$$$$$$$$ by being overwhelmed in the stores but we never have much to eat! When recovering for 4 months on the couch b4 I went back to work I was so enthralled but QVC..... it was perfect for my short term memory loss since it keep reapeating itself over and over and over!

We did not go see the 3 Stooges today because my husband was tired and napped and he did not have a NASAH.

[Teechur]

Hello,

Not real happy today. Yesterday I felt the best I have felt in 3 months. I have been resting and trying to take care of myself. Last nite my wife and I went out to dinner and then shopping for furniture. We had been putting off shopping due to both of our healths. We went in and found a couch, chair and two tables we liked in about 15 minutes. We decided to buy them. It then took the salesman almost two hours to write up our order and finalize the details. He must have asked for my wife's social security number five times and kept asking our phone number to put in the computer. It was hot in there.

Needless to say, it friggin wore me out. Sitting in a hot store waiting. Oh, forgot to mention the super bright overhead lights to "showcase" the furniture. My feet hurt and headache. Now have to go to grocery store. One good day in 3 months? Sorry for being negative, just frustrated. Work tomorrow, hope I'll be ok.

David

David I am so sorry you started out with a good day and it ended on a sour note. A few things I've started doing that helps; carrying sunglasses and foam ear plugs or even just ear buds with me. In stores or even at work I wear the sunglasses when my head is bothering me. I find bright lights, particularly fluorescent, just drain me. One of my friend who had a stroke 16 years ago says he still can't handle fluorescent lighting and wears a ball cap all the time. He owns a running gear/shoe store, so he can get away with it! I just wear my sunglasses indoors and pretend I'm too cool for school.

I know we'll get more good days...I've had two in three months (we must have exploded around the same time). I was so excited because I thought that meant I was getting better. I think it did, but it wasn't how I expected it. I'm actually not feeling horrible today. Woke up with headache but decided it wasn't bad enough to keep me inside (weather is AMAZING here today). Got some Costco shopping done when they first opened (much easier, way less people) and then sat in the car while Roy got other stuff. I still use a cane out in public because I can misstep too easily and boom, I'm on my behind. Plus it kind of warns people not to get too close because it's when people get too close that I get kind of nervous that I'm going to be knocked over. When we got home I was tired, but decided I wanted to go on a walk in the sun anyhow so Roy and I walked 3 miles. I used my nordic poles and it felt good. Then I came home and took an iced tea into the bedroom and rested for a few hours.

Friday I went out for a walk alone (with my dog) and when I got back my neighbor teased me about the poles (How is the skiing today? Ha. Ha. Ha. Ha.) It embarrassed me, then it made me mad. I was feeling so good that I'd walked the dog on my own without petering out and she kind of burst my bubble. Why can't people just be more sensitive? I think that's what I hate. Sometimes I want to wear a shirt that says "Not firing on all pistons! Be nice!"

[MaryB]

Teechur,

I am going to have a nasty little dig at the Honda dealer on Tuesday. I had a car recall so I went in and I had a seat belt issue so they had to order a part. He also gave me a list of $969. worth of work I needed done & would I like that done that day? Well No, thanks I cannot do that right now. I checked with my mechanic and it was all basically bs . SO anyway I made an appt for this Tuesday to get seatbelt issue done. Well jerk face Larry from Honda has called me 3 times afttrer I made the appt. being really crappy that they can only hold th epart for 30 days bla bla bla and it has been 33 days bla bla bla. I sat and listen as I was at work. But first he should of told me that in the beginnning and second you don't ***** out your customers. SO on Tuesday I am going to speak up to the manager about that. And let them know I do have a brain issue- now i am not using it at an excuse but I do have appt on my days off etc..... and if he said he on;y coudl hold part for 30 days I would of been more mindful but jeezzzzzzzzzzz. We need to treat people with more respect and kindness....... what an A**. Plus I already have a hard time trusted people with doing the right thing as I cannot make those decisons like I use to. Jerkface Larry.......oh Mad Men is on.................

[Teechur]

Teechur,

I am going to have a nasty little dig at the Honda dealer on Tuesday. I had a car recall so I went in and I had a seat belt issue so they had to order a part. He also gave me a list of $969. worth of work I needed done & would I like that done that day? Well No, thanks I cannot do that right now. I checked with my mechanic and it was all basically bs . SO anyway I made an appt for this Tuesday to get seatbelt issue done. Well jerk face Larry from Honda has called me 3 times afttrer I made the appt. being really crappy that they can only hold th epart for 30 days bla bla bla and it has been 33 days bla bla bla. I sat and listen as I was at work. But first he should of told me that in the beginnning and second you don't ***** out your customers. SO on Tuesday I am going to speak up to the manager about that. And let them know I do have a brain issue- now i am not using it at an excuse but I do have appt on my days off etc..... and if he said he on;y coudl hold part for 30 days I would of been more mindful but jeezzzzzzzzzzz. We need to treat people with more respect and kindness....... what an A**. Plus I already have a hard time trusted people with doing the right thing as I cannot make those decisons like I use to. Jerkface Larry.......oh Mad Men is on.................

Good for you, Mary! Perhaps you need to remind them that not everyone they are dealing with has the capacity to drop everything. I would explain, if it were me, that I had a stroke (or brain hemorrhage...I find those make more sense to people) recently and that means that I am not firing on all pistons. I would also point out that it seemed like he turned abusive when you wouldn't do the $1000 worth of work that your mechanic said didn't need to be done. They do make most of their money in the repair department, so that's why they push it. I'm sure no small part has to do with the fact that you're a woman. Want to lose my business, go right to my husband when we're shopping (as happens all the time if we're looking at anything related to technology...and I am the IT teacher. He knows NOTHING about computers.)

[Laura Laney Welch]

Mary, just tell them you can't commit to that kind of cost right now because of the bills from your recent brain hemmorhage, and you really don't appreciate the hassle. That usually stops 'em dead in their tracks! Sandi K - do you remember how long the dropsies lasted? I cracked up when I read your post from about 10 days ago about the dropsies - my husband was just teasing me about them today as I unintentionally threw things around the kitchen.

I just read through this whole thread (some of it for the 2nd time). I feel like I am having plenty of good days, but I have been trying to listen to my brain and rest when I feel the need, which is definitely a new concept for me. I'm about 19 weeks post-SAH, and have been focussing more on my family and have very little patience for anything else. I used to do a ton of fundraising and volunteer work at my kid's schools, now I am leaving all of that to others. I'm having a hard time caring about it. I have to say I like the new me. I was pretty type-A before SAH, and while admiring the scenery on a spring break trip in the mountains a few weeks ago, I told my husband that there was at least one advantage to the SAH - it pulled the stick out of my rear-end! He was kind enough not to laugh too much, but I think he agreed!

Because I've slowed down, I've been able to be much more spontaneous in recent months. Today I enjoyed the afternoon with my 10 year-old and some friends watching Chimpanzee and talking about Earth Day. I probably wouldn't or couldn't have managed that pre-SAH. I'm getting through by listening to my body and finding joy in the little things, something I didn't do much of before December.

[kpaggett]

I don't know about you guys, but it seems so difficult to even identify set-backs. I end up letting the trend go on and on until finally it hits me like a SAH!

My physical fatigue was the hardest to figure out...all the stuff I believed before the event hasn't held true in the least. I now take walks for about 40min and do yoga 2X week and that's enough. No more working out on the Elliptical or balance beam. Why did they think I needed to become Nadia Comaneci! I can balance within normal limits even though it's nowhere near the way it was before. Gees, gimme-a-break I'm not using a walker anymore!

No more feeling like the aforementioned 100lb weight legs. Whew! It really sucked.

Right now it's the inappropriate crying that really gets me. I went to choir rehearsal last week (fab BTW) and went up to thank the director for doing it...then the tears came...I didn't really care THAT much, I was just saying a little thank you to be nice, but of course the director thought I was so heart felt and so it was awkward. BUT, sometimes I really am crying for the loss and the trauma that SAH has brought into my life. Then I really do need the support and the shoulder. It must be confusing to my family/friends.

~Kris