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New Year Temperature Check for all BTG'ers


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Hello to all and Happy New Year:

It seems we have alot of new members so would like to see how everyone is doing. First of all welcome to any new members. I have been here since Oct 2011. It has been a great site and a life saver for me.

Last year in January I posted a thread of Temperature Check which just means "How are you feeling?" If I have the privilige to do so I may do this every January. If you are able to give a number to your health that would be great. Obviously 100% would be great and tip top shape, before SAH health if that applies. For example, 80% would be able to go to work, do most things and function ok.

Last year I posted that I was at 72% health. Sadly, that has gone down to 40-60% on a daily basis. Good days are 60% and bad may be 30% or 40%. Last year in January I was working 28 hours. Now I work 40 hours. Certainly part but not all of the problem.

For those who particpated last year, thank you and you may want to compare your numbers. And you can find the other thread in January of 2012. I'm not smart enough to figure out how to link it.

I would love to hear from those that are doing well, those that are struggling, anyone who wishes to contribute. Think of it as a mini-diary. there are no wrong answers.

So if have to give myself one number it's 50%. My day and life is a coin flip. Ok maybe 51 and I'm a majority owner :)

I hope to here from many and i wish everyone wonderful health for 2013!

Thanks,

David

Edited by amexdm
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David I can never put a % on myself its just too difficult. Life is way to short to sit and try to work something so varied as that.

I hope you had a lovely festive season & are in good health for the New Year....

take care

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I used to use the 'Kris' scale...how much do I feel like the essence of Kris. I used to feel like a different person all together. I scared myself when I looked into a mirror and of course would cry about it too. When I was getting neuropsychological testing, the Doctor noticed some strange responses on one of my personality inventories so she asked me about it and I told her that I felt like another person all together. She said, 'No, you feel like yourself, but had something really bad happen to you.' So much for trying to understand me! I loathed her after that. Now, I feel like Kris. However, I feel like Kris that's not 100%. I feel more like 85% at 1year 5months.

What has really made a difference in my recovery:

Meditation

Yoga

Neruopsychologist for talking (a different one) up until 1 year 3months.

Not working or requiring any specific thing on any given day of myself

Support from family and friends

BTG for sure

~Kris

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I don't remember this from last January David but hopefully one of the computer boffins will pop up and provide a link. Maybe I didn't comment last year???? Who knows :lol:

Every day is so very different. Overall I would not expect to be very different from a year ago BUT I was at 3 & a half years post SAH then (4 & a half years now). Earlier on I'm pretty sure there would've been huge improvements in a year.

Michelle x

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I don't remember this from last January David but hopefully one of the computer boffins will pop up and provide a link. Maybe I didn't comment last year???? Who knows :lol:

Every day is so very different. Overall I would not expect to be very different from a year ago BUT I was at 3 & a half years post SAH then (4 & a half years now). Earlier on I'm pretty sure there would've been huge improvements in a year.

Michelle x

You did participate last year GG and said 70%. Still the same? Hopefully better!

David

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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

Ah ha David, you are right! I got off my lazy cyber bum and searched your posts from last January and the above ^^^ is what I replied then :-D I may have been a little premature to declare the declare that the afternoon naps were over BUT they are still not every day. Although still a feature more regular than I would like, some days a lie down for a couple of hours (without actually sleeping) can keep me able to do the other stuff later on like cooking tea & just being here & communicating with my son after school.

I think 70% may still be accurate and I now have a plan to ask my nearest & dearest what they think of this figure and if they think I have improved even more since then.

Thank you for the reminder - I'll let you know the update from those around me :-D

Michelle x

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This is a good thread! I don't remember from last year either - oops!

I'm nearly 3 years post-SAH and I'd say most days I'm 100%! Am I just being optimistic? Or am I in denial?! The problem is, when I feel ok I go at everything like there's no tomorrow, and then, like before Christmas, I crash and burn and spend days in bed. I'm stillllll trying to get the hang of pacing :crazy:

I started a new job 2 1/2 days a week in March. It was a new job because I had my SAH when I was temping, so didn't have a job "to go back to". I was doing a bit of ad hoc work here and there from about 18 months after the SAH and as I work in a hospital they were more understanding than a corporate employer. I did 5 hours on a Tues and Thurs which gave me time to rest in between, but there were some weeks I couldn't do it. Since starting this job, however, I have come on in leaps and bounds and although I know I could definitely NOT do it full time, I seem to be coping really well.

So, I'd say that I average at about 80% when I take care of myself and listen to my body. I'm happy with that!

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Hi David, quite new on here so didn't do this last year but its been fascinating to read what everyone is saying! Its reassuring because its over a year since my SAH and I feel a fraud because inside I do not feel 100%, even tho to other people they think I am! I feel guilty that I still have really 'tired and sad' days. The main thing now is that Im still lost and dont recognise myself, with regard to feelings and actions! So outwardly I would say 90% but inwardly 50-ish%

Sorry that your mark has gone down a bit but you are also working a lot more which must be taking it out of you!

Thank you for doing this, take care, Linda x

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I am 65%- 70% most days are the same anymore. I work 35 hours a week and think I would be 80% if I did not have the stress of a full time job. It exhausts, drains, and sucks me dry! Get the picture??? Leaves me little left to enjoy most days. I feel as I am better and doing more but I still think working is taking days off my life as smoking does for a smoker.

I feel less fatigue but take more medication.............I always think I am going to take less medication but somehow I end up with more. I am tired but not that awful exhaustion due to some medication I take now although it has less affect on me than in the beginning. I also have other health issues so how much is just all of it or normal aging, the type of job I have at a fast pace noisy veterinary clinic?

Also there are things that happen you get use to such as walking and looking where your feet are all the time, accepting you will never paint a ceiling ever again- the thought makes me cringe like I would first off feel comfortable enough to even get on a ladder again and second if I could hold my head back like that ever again now I think I would fall flat on my back.

So you make so much adjusting in your recovery and accepting and changing how you do things. It is really hard to compare Pre SAH to this Mary. I have had 16 months of recovery and it right now today feels as if it has taken its toll on me. I am all for those clever inspirational messages but there are days I cannot call it depression but more of a “Ahhhhhhhh shut up I am doing the best I can right now I do not have time or energy to smell the roses!”.

My suggestion is to work as little as possible as it takes away from the other things in life you want and could use your energy to enjoy!

:lol: MaryB

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Hi David. I, like you , have recently hit the buffers. After years of improvement, suddenly, everything unraveled.

I now try to imagine my life trough positive thoughts. Cognative therapy is helping, but the black dog is still sitting on my shoulder. We are all in this mess together, and no-one is immune from the negative feelings. Thank Karen for giving us this outlet for our misery. I hate being negative...but, sometimes, it helps to spew out your angst. Cheers, Bill.

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ah, took some weight off my brain!

I was just thinking about that %, so on my days off I never go shopping or want to do anything that will use up my precious energy as I do not bounce back to regain it. Even with firbo I could bounce back and judge how to deal with doing extra but now I have not gotten back there yet. If I painted or did major uard work I would pay for it for a week but now I do not have the enegry first off and there is no bouncing in me! So basically my life is so much different not that I do not realize it can be worse but everything has a price.

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I think it was this thread I had trouble answering last year? Can't remember. :crazy:

Last year at this time I was working. I was exhausted. I was making mistakes and taking on work to 'prove' I was ok when I really wasn't.

I feel a lot better a year later. I'm not sure if that's because I'm not working or because it's a year later. Probably a combination of the two. I've had a well needed rest but fatigue is still just around every corner peeking back at me. A big part of feeling better is definitely in accepting what happened to me and adjusting my expectations. I still have a ways to go on this journey and I definitely don't have all the answers. I feel way more positive about things and less anxious.

I struggle with putting a number on it.

Oh- Mary that was billiant! Good job adding the link.

Sandi K.

Edited by Sandi K
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I am loving this thread!

I can't remember last Christmas particularly, little snatches here and there that are a bit dream-like and that's all.

This year I wouls say I'm at about 80%. Like everyone else is saying, it's variable. I'm rather impressed with 80% because this is my 6th week of full-time hours. If I was in my previous role, I would probaby have come in around 40%. It's amazing the difference a supportive manager can make to the return-to-work process. Instead of 'Dawn, why are you still writing things down and not multi-tasking' I get 'Dawn, do you need an extra break today, you look a little tired'. What?

Things have moved on greatly in 12 months. I have finally reached the acceptance stage and not railing against the new me has made life much more pleasant! I still have sleep problems but my memory is significantly improved and logic is definitely returning. I can even multi-task in a small way. These last chenges I think are down to returning to work, it seems to have boosted my brain somehow.

Talking about work, I'd better go and get ready. Have a good day all!

Dawn x

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I had flu so was really down this year/winter but getting better so on the up thank goodness xx

Walking was hard with flu (achey limbs) but feel positive now, such a baby Win !! lol

Love to all and thanks David for this topic xxxx

WinB143 and TQ BTG xx

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I've struggled to answer this one. Think I'm not alone in that.

It's 10 months since I had my SAH, and 6 months since I had my shunt placed . I took a huge step backwards when I went back in for surgery for the shunt and expereinced my first ever anxiety attack shortly after that, plus numerous shunt adjustments and blue light ambulance visits until we got a good setting.

I can however track real progress I have made since last March but not one figure would cover it for me, (sorry David,)so here's how I'll try and rate myself to answer this.

Mobility 80% . On the whole I feel I have regained most of my coordination and movement but I have some serious shoulder issues and balance can be off

Emotions 70% . I am a glass half full girl and feel I have reached some acceptance of what's happened. I've still a lot to come to terms with but with you lot helping me I'll get there.

Health and Stamina.50% this is where feel low and am concentrating my energy right now, building up my stamina both physically and mentally. It's so far off what it was. I am tired ALL the time.

So using maths head that would put my average at about 63% ...not too shabby for 10 months after my worst near death experience to date but room for improvement which will hopefully still come.

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This time last year, I had no clue what a subarachnoid hemorrhage was! I'm almost at my first year annie-versary - January 29th. It's been a long challenging year filled with crazy depression and lots of ups and downs. Physically, I'd say I'm about 90%. Not 100% because I still feel exhausted for a day or two after if I over-do it. Also, the incision in my scalp continues to feel tight most days and pulls across my forehead like a tension headache. Definitely things I can deal with though. Mentally, I'm feeling so much better after getting my hormones straightened out. The stress

to my body from the SAH caused them to go a little haywire. I'd say I'm about a 90% there too. All in all pretty good (for now). Ask me in a month and it may be different! :crazy:

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Hi all:

Thanks to everyone for responding. It was smashing. It is interesting to see how we are all so different.I work in Finance and work with numbers all day so forgive me for being hung up on a number. Plus I go the Pain Clinic once a month and they say "How is your pain on a scale from 1 to 10"?

We can all maybe look back 6 months to a year and see how we are doing. Best of health to all and 100%!

Thanks,

David

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Hi David,

Sorry I am a little late coming to this party. My levels tend to fluctuate quite significantly on a day to day basis and is largely dependant on what and how much activity I am taking on. I am also not sure what I am really measuring. If it is against my energy levels pre-SAH then I am probably as low as 20%.

If, however it is a measure of my mobility and energy in relation to my adjusted lifestryle then a few weeks ago I would have said my overall score was approx. 70%. My areas of weakness being energy (or lack of it) headaches and balance issues.

This week I have dropped largely due, I guess, to my return to work. I would estimate my overall score right now to be in the region of 60 - 70%.

Apologies for being so vague!

Wem

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Hi again,

We just finished our move to Ohio and I can say that it has allowed me to jump a few percentage points! Which confirms what I've always expected...for me it is all about how much underlying stress there is in my life.

I walked yesterday and I felt absolutely no physical symptoms which is the first time that's ever happened. During the day, my legs no longer bother me at all. Whew!!!!! I still have to take it easy at times and the challenge is shifting my expectations as my stamina has increased. However, since I still crash... http://www.behindthegray.net/vbulletin/images/smilies/set5/crazy.gif

I hope we all keep recovering at our own rate!

~Kris

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