Jump to content

Recommended Posts

Hi all,

Let me begin by saying the last two weeks were not good for me. The weather has been rainy and my head hurt and felt off kilter. I had my NASAH a year ago and I was so hoping to be past more by now but I do know how fortunate I am. But, even with the headaches and dizziness I push myself to do more.

I notice when I am very active I do not feel as bad. So, I will plant my garden, cut the grass with the push mover, walk 2 or 3 miles, dig up old bushes. Literally anything that requires physical labor. I feel "normal" when I am doing these things. Now, when I stop to rest that's another story. Resting never makes me feel good, if that makes sense.

I find myself pushing more and more. I keep saying to myself, "if it is going to happen again it would happen now." Although, when my bleed occurred I was doing nothing but sitting. It's kinda like testing myself over and over agin to see if I can do these things without getting sick again.

It's 3:00 am here so I hope I am making sense. Anyone else test the boundaries?

Iola

Edited by iola
Link to post
Share on other sites

Hi Iola

I used to do it all the time - walk further and further, stay awake longer, work harder etc. I still do it now occasionally, nearly 8 years on. It's almost like trying to prove that it never happened and for the most part now I do sometimes wonder whether it was all a bad dream lol.

Link to post
Share on other sites

Hi "I",

I used to try and do more, more than zilch lol.

I try for my family, I love praise.

Now I sleep when needed as it's our bodies way of telling us to slow down.

I wish us all well xx and I have had my sister all weekend so going to get a goodnights sleep tonight.

We can only do what we can ~ So Rest all BTG'ers when needed !!

Love

WinB143 xx xx

Link to post
Share on other sites

Hi Iola,

this makes perfect sense to me. I feel a similar way most of the time. If I keep going, I'm alright but if I stop then I feel it. My partner is always telling me I do too much but I can't see it. We have this discussion often where he asks me to stop doing so much but how can I when I don't think I'm doing a lot?

Most of the time, I've worked on the idea that is I'm going to feel fatigued anyway, then I may as well get lots done first. Then a fortnight ago, I crashed. I'm just going into my third week off sick and I still feel terrible. There are days when my arms feel like lead. Other days, I can move but I can't talk. I thought I had suffered with fatigue since sah, but this is a whole new level of awful! It seems that it catches up over time, for me anyway.

The other thing about doing, doing, doing is that other people come to expect a certain level of ability from us and so are as unprepared for a crash as we are. I think we are so determined to be ok, to show everyone else that we are ok that we actually do ourselves down in the long term. I wonder if it's a form of denial?

Link to post
Share on other sites

Hi Iola

I think it is in our nature to always push on, to strive for more but sometimes that battles with the acceptance of our changes that we must also reach. We can't be 'the same as before' we can only keep designing our new normal hard though that is some days.

Win it sounds you have made some peace with your annie :-P and there is much to be admired in that but I dont think I am there yet. Like Iola two years on and I am still railing against having to make choices each day. I get so frustrated that somedays I can choose to do something, feel fine when I am doing it, and physically able to do it and then after, wham, my brain lets me know that actually we are not there....YET...but that said I am happier these days and feel its ok just to be the me who some days can only do nothing but enjoy the healing that stillness brings.

Iola. We must continue to learn patience with ourselves, practice compassion and kindness towards ourselves, that way when we do slip back which we do at times or feel dreadful when we have 'pushed' ourselves we can just reflect and find the happy at how far we have all come since the day when our brain make up changed.

One thing I have been learning about from my occ health team and neuro team is the importance of pacing my daily activity.It is proven in brain injury recovery that if you keep pushing against the limits then you can move from boom to bust frequently, but pacing your activity so you come in just a little below what you could do at your full limits can help conserve energy in our damaged brains a little more. Regular breaks of quiet time interspersing everything you do, small time outs in your day, that's how I roll now. its not very rock and roll but I wouldnt be able to do what I am managing at the two year mark if I didnt pace.

I am really hoping the fog lifts for you this week. sending positive vibes

  • Like 1
Link to post
Share on other sites

So true about fatigue and others expecting so much of you. My husband still says he can't believe it's taken so long to heal. Heck, I'm still healing. Not sure if that will ever stop. I do push my limits and I also do crash. So frustrating at times.

Daff, it makes sense what you said. I never really thought about it that way. Patience was never part of my vocabulary but it needs to be for me and my family. I push and force this tired brain of mine to do more and more.

Dawn, I am sorry you are not feeling well. I do hope you open your eyes soon to a 'feeling good' day. I pray every night to open my eyes in the morning to a healthy feel good day.

I

Link to post
Share on other sites

"I"

As Daff and Casey have said, we are still healing we have fun days and poo days.

I try and say to myself "Win you can be a poo today or enjoy your day".

I feel so bad for my family that I try to be nice, that lasts for 1 hour lol then I upset someone.

I feel like someone was looking out for me that day as I am still here !!

Hope you are feeling good today if not sing xx

We put our families through so much and we are back to give them all the hugs we can.

What's the betting when Hubby comes through door tonight I'll be a miserable moo.

Oh well why change lol

Be good "I" xxxx Hope today is better for you xx

Love

WinB143 xx

Link to post
Share on other sites

I,

At a year post, I was always striving. Striving to heal. Striving to do more. Striving to put off the crash...to not feel bad in some way.

Now, I have given that up and in doing so, I am way more satisfied...contented. I've come to realize that I am not my body and that it is just an extension of who I really am. I am...and it doesn't matter what I do, how I feel in the moment, or what of my old self is still there. There are infinite possibilities for me each moment. No need for striving. This may not make sense, but it has been something that really took hold after about 18months.

Good luck to you finding your contentment in your own way.

~Kris

Link to post
Share on other sites

yes, i also tend to push myself but not intentionally. These days it's hard to recognise when is 'enough' as my body doesnt give me the feedback needed in time like it used to (ie. 'stop what you're doing now or or you'll regret it later') Like you Dawn I usually feel better when I'm doing something but I always feel the consequences afterwards-when its too late.

I suppose its the same as drinking alcohol -a drunk will tell you its not the drinking that gives you the hangover its the stopping drinking !. But that's no excuse to just keep on drinking ! Sooner or later you have to stop and then it catches up with you.

If I feel really rubbish and I cant do something I can accept that but its when I feel really good and know I have the ability to do normal stuff but I have to make that choice to pace/limit myself -that's what really frustrates me.

Elaine

X

Link to post
Share on other sites

Boy do I push myself! It started when Kessler was begging me not to leave to take my son to Fenway! Literally the day after I was released/left, I got in a car with my family and drove to Boston. I walked all over that city, with my walker and my wheelchair!

I have continued to push myself beyond my physical limits and most certainly my emotional limits this year. This past weekend I walked all over the Inner Harbor in Baltimore so that my son could have fun before being poked at Johns Hopkins. I find I push my physical limits more for them... the family. So that it feels normal. Inside I'm screaming or crying because I haven't felt normal since June 7, 2013. With my cognitive deficits I doubt I will ever feel like my normal again but I push myself to "act" normal.

The harder I push myself the more I hope to feel normal. I suppose it's a good thing....... the alternative is giving up ...by pushing our limits we discover we may not have any limits!

Link to post
Share on other sites

Good grief Susan,

You were walking around the week you left the hospital? Wow, no way I could do that back then. I know how you feel about not quite feeling like yourself anymore. I push to forget, to feel alive, to not think.

You were at the Inner Harbor? Very cool place. Science Center is awesome. I hope all went well with your son. Did you go to Kennedy Krieger? My friend has an autistic son and takes him there.

Giving up is never an option.

Iola

Link to post
Share on other sites

Hi Susan you could almost be writing for both of us as mentally and physically I can't and won't give up. I have five young children and they, more than ever now, need normality and if that means I stifle the scream some days then so be it. My husband thinks that by not accepting my "lot" that I am in denial but it's not denial it's not quitting which is a totally different thing.

If everyone in life believed what they were told we'd have stopped existing centuries ago

I don't have the pleasure of knowing you well but I have to say I am amazingly proud to have crossed paths with you

Link to post
Share on other sites

Anita,

Your Children will push you also, I also have noticed the difference in you since your first post.

You have to keep strong for children, my daughter is a woman but still my baby and when I had

shunt fitted she said welcome back Mum, we both blubbered lol.

Keep going Anita you are getting stronger, and remember we have all had a second chance.

Life is good isn't it lol xx

Be Well and I will get off my fat bot in a minute.

Love

WinB143 xx

Edited by Winb143
Link to post
Share on other sites

Iola ~ Yes we went to KKI! They are awesome there and I'll be going once a month now with my son. As for walking around after I left the rehab place.... I have come to the conclusion I was high! LOL When I look back at how many drugs I was on Oxycotin, steroids, etc. I felt like Wonderwoman!!! :lol: I didn't "hit the wall" until they took away my drugs than I realized it was the drugs keeping me active.

Anita ~ FIVE??? God Bless You!!!! I can't imagine putting on a happy face when faced with the amount of laundry and daily activities you must have with 5 children! I only have the one and he wears me out these days. Keep plugging along! You are right... We accept our "lot" we just don't cave into it! Stay strong!!! :)

Link to post
Share on other sites

Hi Susan

Five isn't quite as daunting as it seems , they help, care and entertain each other and despite their protestations love each other dearly. Our house is hectic but filled with personality as they range from 12 down to 4 yrs. I always joke that even the cat is male.

If you count my husband then I have six children and he's bar far the worst sometimes but as we say a family that laughs together stays together.

They keep me young and even at their worst they still give me a reason to fight

Take care

Anita

Link to post
Share on other sites

I swear I could have written that, and probably have written something very similar a time or two! I often feel only like "me" when I am running. It still, after almost 2.5 years, is the only time I feel completely balanced (as in not dizzy), no pain, and like a whole human being. My neurologist says it has a lot to do with how endorphins and dopamine are released with the activity but also with the ability to practice dissociation. When we are busy our mind is sometimes able to dissociate from the pain we are feeling and I think of it as almost "rising above" it. Unfortunately we can't do it forever, which is why when we stop or slow down the pain returns and we feel it sometimes worse.

My main neuro said there is a psychologist in Vancouver, WA who teaches how to practice mindful dissociation so I'm going to try to get to see her sometime this summer. I would love to be able to do it without having to go on long runs (although I love long runs, and the benefits they bring I can't always do them because the pain is too great or I don't have the time).

The weather here has been very changeable lately which means I have been misterable and really kind of hating life and my head and my SAH and the whole enchilada. (Not really, but you know what I mean.) Weather gets me down tremendously because with weather change comes pain and when I can't overcome the pain I get depressed. Really thought I'd be through with this by now since my SAH wasn't a bad one, but I'm not. Pffffffft. Stupid Spidey.

Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Guest
Reply to this topic...

×   Pasted as rich text.   Restore formatting

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

×
×
  • Create New...