Temperature Check

[amexdm]

Hello everyone and Happy New Year,

I have been away for a weeks trying to rest and take care of myself. I would be curious to know (if it's ok) how everyone is feeling after the new year.

If you could give a number to your health percentage from 1 to 100 with 100% being being in reasonable health pre SAH what would it be? 80% being feeling decent, able to go to work, do most things.

I would say I am a 72 or feel 72% healthy.

I get up and go to work each day but don't feel all that great. I am tired, have headaches but can function at an average level.

If anyone would like to share their story or just give a number that would be great too. Maybe We won't feel so alone. Thanks

David

[Sandi K]

Hi David, I'm glad to hear you have taken some time to rest. I remember your posts from before Christmas and you were feeling very ill, probably much below 72%!

My number would change day to day. That's part of the problem. My rehab therapist says the trick is to get to an even pace with your schedule so you don't have highs and lows. Yesterday I pushed myself through a full and busy day at work and my brain felt like scrambled eggs afterward. Last night I would have said 65%. Today I'm off, I've had a nice slow morning, I'd say 80%! Finding that even pace with no ups and downs where the energy stays mostly even and we don't need duvet days (or trips to the ER) in between is where we need to get to.

My goal is still to get to three full days at work per week. When I get there and still feel good on days off and have a social life I'll say 80%. Cuz ultimately I want to get to back to fulltime! I know that might not happen though. One step at a time.

Happy New Year David! This will be a better year!

Sandi K.

[amexdm]

Hi Sandy,

Thanks and great to hear from you. I agree with you 100% that the days are different. Some days are 65 and some are 80. It seems we are about the same in our recovery. Overall I'd say 72. I said to myself if I can get to 80 consistently then I will be happy.

80 means go to work every day, be able to do other things cook, clean, do laundry and STILL have time to either exercise or do social activities. Right now I would say I'm not that close. But I do agree that an even keel and not so many ups and downs is key. To quote the Forest Gump movie. SAH is like a box of chocolates, you never know each day what you're gonna get.

Before Xmas i was about 65 every day but I have rested and gotten better. But is such a SLOW process. But let's make it a better year this year. I have gone to play poker each Saturday morning this year and won $1000 one day and $850 the next. Not bad for a couple hours work and helps me pay a few bills. So maybe the good vibes are coming back.

Hope you are doing well at work and keep in touch.

David

[SarahLou]

Hello David,

I agree with Sandi, it's good to hear youve been having some rest time.

Umm.. Now let me think, what percent do I think I'm at.. Right at this moment I feel pretty rubbish as I'm feeling rather zonked out. I've increased my return to work hours this week, I'm now doing an extra hour per day (that's 3x 5hr shifts a week now) and I've also changed my work days back to my pre SAH days of mon, tue and thurs. The mon and tue are busy clinic days and I can't believe the difference working one extra hour a day makes. My whole body aches, I'm struggling to think straight, my words are muddled and it feels like I've been kicked in the side of my head, but apart from all that I'm fine!! I sure hope I get used to the hour and day changes, they're pushing me to work even longer hours. We're so under staffed it's ridiculous and it's not looking likely they will employ any more staff. I don't get the breaks I need and should be having.

However, I would say I'm normally at about 65-70. It really does vary on what I've been doing, how my sleep is etc. Sleep!!?? What's that!! I do find it a struggle coping with work, home life, being a mum etc. I haven't yet hit a happy balance, I just get on and do things when I should really be taking some time out, rest time. Then I'll end up really struggling, my brain will give me a short sharp kick and it's like it goes into shut down mode, I have no choice but to rest.

Don't get me wrong, I'm loving being back at work but blimey it's tough. And no one else understands. Most people just think I look fine so I should be fine. If only it worked that way eh.

Sandi, lovely to hear that your work goals are coming together, glad you've had a quieter day though so you can have a bit of a rest. It's so hard isnt it, aiming for what we used to be, used to have, when you're trying to do that with a re-arranged brain. Big hugs to you for doing so well.

Gosh my eyes now ache, still waiting on my new lenses, hopefully they will help but there's already doubt due to the strength and the prism needed. All I can do is try, got eye hospital appointment again in march, and MRI scan results I'm waiting on. Oh the joys of playing the waiting game!! Ooops gone a bit off track, I'm rabbiting!

Take care dear David and keep smiling,

SarahLou Xx

[Carl]

I also think it changes day to day, I went back to work after a short two month recovery. People told me I was foolish for doing it but I was feeling guilty staying at home while my wife continued to slave away. I was also going stir crazy.

At first I would say I was 90% coping very well with the day to day goings on at work.

I found that after two hours of work I would get a bit of cabin fever and would take the truck out, do some field work and go for coffee.

Well being a civil servant, I tended to take a bit too long for coffee, along with some co workers.

Well I was caught and recieved a severe disciplinary action.

My entire job was changed. I now find I am probably 70% now.

I still work 8 hours a day 5 days a week. Minor things become quite stressful and even the weather plays a part in how the days go.

I do enjoy walking whenever I can and that often boosts me rain or shine .

There are also emotional days where I become an introvert, I would say they drop me down to about 60%. I don't care for myself on these days and wonder why others still do LOL. Not a huge negative feeling but not my usual chipper self.

I find the support I get from comments and threads I read on this group have been the best shot in the arm I have had through out my entire ordeal.

I have no doubt in my mind that eventually I will reach 100%. Perhaps nothing like the old me, but certainly more aware and a cute likeable chap anyway :redface:

[MaryB]

I agree with Amexdm ..“If 80 means go to work every day, be able to do other things cook, clean, do laundry and STILL have time to either exercise or do social activities. Right now I would say I'm not that close. But I do agree that an even keel and not so many ups and downs is key. To quote the Forest Gump movie. SAH is like a box of chocolates, you never know each day what you're gonna get.”.

Being 14 weeks out and having other health issue I was not even close to 80% most days prior to my head exploding. I had a really good week last week where I worked Wed, Thurs, Fri -8 ½ hour days & a half day on Saturday. By Saturday I knew worked way too much. I do nothing much when I get home either, most evenings I would just be a couch potato resting my poor head and neck. I also do weekend treatments for sick, hospitalized or animals boarding with medications along with making sure the staff is doing their job etc... I am just now “rested” physically enough to work tomorrow but for some reason head is feeling all weird again. Not sure if it is from over doing it or if it was increasing the new anti seizure meds. I have that weird ear full of fluid swishing around feeling, screws that hold my brain to my skull feel loosen, can’t think straight. I can’t pick out which pair of socks for 5 minutes....Also feel on inhale somewhat of a dizzy feeling. So I would score me in the 40%. Sat., Sun & Monday last week while feeling “good” a 67% .

I have no doubt in my mind I will not be 100% or 80% but I would be happy with part time work, some play and able to do some chores and of course just grab a stupid pair of socks and not have to think about it like it was a science experiement!! I would love to get some exercise too. I am thinking of listening to yoga and doing the breathing for starters. I have much foot pain from other issues so yada yada yada!! I love this place!

MaryB

Edited January 11, 2012 by MaryB

[SarahLou]

Hi Carl,

Like yourself I love to walk too, I always have and I always will. On my work days I walk into work, it takes just under an hour, and I cherish every step. A lot of people have told me I should be getting the bus. The buses are very noisy and crowed at that time of day. I need peace and quiet in the morning. But most importantly I used to walk to work pre SAH so in my mind now is if I'm not well enough now to walk to work im not actually well enough to be working.

I will walk in the pouring rain, get soaked to the skin, laugh my head off puddle jumping. I don't care what the weather is. We're so lucky to live near ish to beaches and the New Forest.

Mary your post did make me giggle, I'm the same with making choices about things too, I'll stand there ages thinking about it, drives me mad! I'll end up telling someone to make the choice for me!I don't think that will change now, it's part of the new me, gonna have to love to hate it! You're still in early days of recovery, go easy on yourself, have patience and understanding. You will get to the goals you want to reach, just not right now. Stay strong, you're doing brilliantly.

David, that Forrest Gump quote stayed in my head for ages! Thanks for that! I kept saying it out loud, I love that film. Although saying that quote over and over did make the hub and Miss C look at me rather oddly!

I'm having a lazy day today, yippee! Well, that's the plan.

Take care,

SL Xx

[KelBel]

Amexdm – A great thread!

I think I am about 80%+ a lot of the time now but that can dip, and like Carl I do get those down days when I wonder why I am here and what is the point of it all… but in the main I am doing really well.

I am 2 years post-SAH now and work full-time (and have been back at work since 11 weeks post-op), and I do quite a demanding office job. I am the longest serving member in my team and everyone looks to me for help, guidance and training…this can at times get quite over-whelming! I also go to the gym 3 times a week, go shopping at the weekends and fit in time to see family and friends…

Cleaning & ironing tends to take a back seat at home at times…although last weekend my plans fell through on Sat & Sun and I ended up having time to clean my flat properly and get some of my ironing done. It felt good. I must try not to cram too much into my weekends so that I can keep on top of cleaning, washing, cooking & ironing.

I do tend to get in from work and have some quiet time; I lay on the bed or sofa, eyes closed and just

rest for a while, before cooking etc… but quite often I do too much!

Mary – I reckon at 14 weeks post-SAH I would have said I was about 40%. I was back at work doing a 2-week phased return at that point and it was tough, to say the least… I had just moved back to my flat on my own, and was able to drive too, but I was SOOOOOOO tired all the time. It was hard going but I got through it somehow.

The Forest Gump analogy is a good one!

Take care

Kel

[Louise]

Hi nice to hear from you again.

I couldnt tell you every day is SO different I've never managed to get back to work so that dosnt help but think maybe I go between 50% and 65% when I first got home I guess around 20% and thats maybe way too much, but each of us are different we all have different mountains to climb.

take care

[Skippy]

Hey there

Before the SAH I'd say definitely 100% - worked 9am - 6pm 5 days a week and exercised 3 times a week. Straight after the SAH I'd say that went down to 30% - I went back to work 3 weeks after (luckily family business so had a bed in my office;-)) and slept regularly thoughout the day. This steadily built up over the next five years and although I can't do the exercise I used to do before (step aerobics - all the bouncing gives my brain vibration) I am back at work 9am - 4pm every day during term time and then do the family business accounts and proof reading in the evenings. I wouldn't say that I'm 100% any more but I know that I'm as close as I'm ever going to get to it, so I'd say 100% for what I can do given the circumstances, but about 90% in comparison - but its been a long, determined journey to get here - and yes, every day is different.

[goldfish.girl]

Hi David,

That's a very difficult question to answer. Reading the replies, though just reinforces that everyone is so very different. I went back to work after about 9 weeks (while waiting for a 2nd brain operation). I fought really hard to get my life back to pre SAH levels for 2 years, unfortunately I never got above 50% and eventually gave in and was pushed by an unsupportive manager at work. As well as working I was a single mum with 2 boys, one of whom has a brain condition too, I had a house to run, a dog to walk and it just didn't work out. I had worked all my life until about a year ago.

I would say i'm now at 70% & I'm happy with that for now. I would also say that since early December I have stopped sleeping every afternoon which is a MAJOR break through and has taken 3 and a half years to happen!!!! I didn't plan to stop the afternoon naps, it just isn't needed every day now. Improvement can still happen this far down the line (albeit much more slowly) but this is a HUGE change and maybe it will lead to my personal percentage rising???

Interesting to read this thread, thank you for starting it.

Michelle

[amexdm]

Hello,

Thanks to everyone for responding. I found it interesting and helpful. I think we saw some differences and similarities. For most of the recent cases, we seem to be in the 65 to 80 range. Thats where I am. I dont expect 100% but I would hope to get back to work full time.

Sandy-You and I are similar and I hope we can both reach our goal of full time work. Keep us posted

Sarah Lulu- I feel 65 to 70 often too. I hope your work is understanding to you. I don't like to walk but I know I need to. I get tired walking to the mailbox right now so I dont think I'm ready yet. Wait, I'm rabbiting....

Carl- I also went back to work after two months. A mistake. Three would have been better. But I'm surviving as best I can at the moment.

KelBel- You're an active young lass. I hope I am able to do things at the level you do. I belong to a gym but havent been in 5 months since SAH. But I hope to get back soon. Hope your weight challenge goes well and you win

Louise- I know how every day is different. Somedays are 85 and the next day 60. But I know you had it tough and I admire your courage.

Skippy- I am encouraged that you are at 90 most days and have fought hard to get there. I am trying my darndest to get there. I used to exercise alot and I really liked to lift weights. Pretty unlikely now but I'm gonna try treadmill soon.

GG- I know you have had a rough go and my heart goes out to you. I still take a nap every day but right now I need it. Work takes everything I have. I go to work, I come home, I fall down. That's it.

Thanks to everyone for sharing and I welcome any other feedback, this helped me and I hope others.

Hangin in

David