Rollercoaster

[Kaz]

Afternoon!

I'm having a down day

Today has been a rollcoaster of emotions - struggling with the realisation that I cannot do all the things that I could pre SAH. I know its only been 4 months and I know i am my own worst enemy expecting more out of myself and then beating myself up when I struggle to concentrate, remember and cope.

Had to leave work early today, I'm on a phased return and fortunately my managers and collegues are fantastic and completely understanding - but it still doesn't help me when I worry if i will ever be able to cope with the pressures of my job and to be able to return full time.

I think the hardest thing is the not knowing exactly WHEN i will be "better". Or even IF i will be 100% again ... answers please on a post card

In the mean time, I'll keep drinking the water ....

[Louise]

Hi Karen

We've all been there your not alone.

Wow 4months and on phase return already goodness your eagar...what is your phased return? eg how many days whats your hours.

there is no hard and fast rule as to 'when' things will improve but taking things easy really does help, maybe you just went back to work too quickly I know that seems daft but it can be a factor.....

Now have a rest.....

[SarahLou]

Hello Karen,

Louise is right, four months is still such early days and you're doing so well. I know it's hard but please try to not be so hard on yourself.

I know exactly how you feel. It's nearly 18 mths since my SAH, I started my phased return to work last October.

It's great to have that bit of normal back but so, so tough sometimes.

Most of the time I'm ok with the new me, I prefer me now, but it's one thing accepting how I am now with friends and family, another thing accepting the changes in my work life.

My best bit of advice is to rant and rave if and when you want to!

I've learnt that life is hard and it's not fair but then no one said it would be.

I'm trying to take each day as it comes now.

I am so grateful for all the support I get from BTG, not sure how I'd get through without the guys on here.

Take a big deep breath Karen, your'll get there.

Read 'a letter from your brain' if you haven't done so already. I read it often, but not enough lately it would seem! I've been a bit impatient with myself!

Big hugs to you.

Take care,

SL Xx

[Winb143]

Hiya Karen

Look back 4 months....have you improved ? answer Yes I Have !!

Keep looking forwards you will get better xx

Now smile and sing x

Regards

WinB143 xx

Edited February 3, 2012 by Winb143

[goldfish.girl]

Hi Karen,

Be easy on yourself. You realise that you are struggling a bit just now & that's a good thing. I'd been back at work for a few months before a manager commented that I 'didn't even seem to know what day it was' when I first went back (and I thought I was fine!) - so being able to acknowledge that you are struggling is a really positive thing.

When I first joined BTG I was desperate for the same answer - WHEN will I be better, will I ever be how I was before etc. Reading through all the posts over time taught me that some people get better, some get a long way towards how they used to be and there is no time scale that fits everyone. I know it is really frustrating (I just wanted hard, fast answers to it all). If you can recognise that things are a bit too hard just now, is it possible for you to be signed off for a bit longer & try again when you have recovered a bit more? I know that the social side of being at work & the normality are so important to all of us but maybe you just need a little more time. It might not be so hard after a bit more recovery time.

Keep your chin up,

Good luck

Michelle x

[Kaz]

Thanks guys.

Reading all your replys, and other posts really helps.

Family and friends have been fantastic and so supportive, but it is difficult explaining the mental fatigue and the frustration when you can't find the right words. The just "not thinking" about doing day to day chores and feeling guilty about resting when others around are working all day and then coming home to have to do more because you haven't done anything.

Leaving work early yesturday has made me realise that i am trying to run before I can walk - and yes, 4 months is still really early days. At the moment I am only working 2 days a week 9.30 -2 - and its great to be back at work - a little bit of 'normal'. For some reason I thought that I would be 100% by now, reading your posts 18 months post SAH and still not back at work on full hours, if back at work at all has hit home, I suppose its because physically I look well, there is no visable deficit, I walk and talk and it still knocks me for 6 when the mental fatigue sets in and i struggle to accept the fact that I cannot concentrate and remember. The worst is having an argument with my partner or trying to tell the kids off (which happens a lot more as I am not as tolerant or patient) the crosser I get the harder it is for me to find the words and I end up stuttering and stammering - very frustrating.

Reading some of your older posts - I'm also glad that the use of swear words is not uncommon during the recovery - I find myself swearing a lot more and my partner has commented on this - I can't help it, why is it that these words roll off the tongue so easy when other words are so much harder to find??

Thanks again - am really glad I've found this site - even it its just to have a little rant and put down my feelings, certainly makes me feel a lot better.

Must be time for a cup of tea and an attempt to concentrate long enough to read another chapter of my book

[johntaras]

Good Morning Karen,

isn't it great to be able to say that to you! I empathise will almost every word you put into your message. I am able to write to you this morning as it is my Friday off. I concluded after returning to work via a phased return and yes getting back up to five days a week that it was too much for me to cope with. Not physically but mentally. I like you do not have any outward signs of my SAH in 2009 but the problems are still there under the surface. I needed to return to work to feel that I was making continual progress post SAH. I kept on measuring my abilities against what I used to be able to do. But I realised that I was a different person now. Work were brilliant and they sent me to Occupational Health where I saw a fantastic Doctor who explained that he was there for my interests not my Employers. When I got up to five days a week but was suffering from fatigue it was him who told me that I may have reached my limit at four days. I spent a month on four days before realising myself that this was true. I requested a reduction in my contract down to four days which was quite a big drop financially but my health is the most important thing to me now. We are members of a very special club. We survived an SAH. I am sure you have looked up the statistics of survival or serious physical and mental disabilities as a result of having an SAH.

I did not start back to work until March of last year and am looking forward to passing my 12 months mark. We have changed after having an SAH, sometimes not all changes are positive. I am lucky in that it has made me even more laid back than before. I do not get angry and frustration only brings me into laughter when I cannot remember something.

Karen I know people on the site will say things like "it is still early in your recovery yet" but it is and you will have changed it is inevitable. But embrace the new you and look forward to many more years of quality time with your family. In answer to when will I be better? You may never be as you were! But you are here, you have already returned to part time working, you can have lucid fluent conversations on the computer with complete strangers! I would say you are well on the road to recovery. Fatigue may be a constant thing of the future I still get it after 2 years plus. I try to plan my seven days, not overworking on my days off!

Sending you big hugs, take care and give yourself a huge well done!

[SarahLou]

Hi Karen,

Our lovely John had some very wise words there.

Have you looked up 'the spoon theory' online? It's really, really good and the best way for those around us to learn how things are for us now. I've referred a lot of my friends and family to that piece of writing.

And as for the swearing.... Oooooh yeah, I have that problem too now! We'll be sat having a nice family meal and I'll put a swear word into the conversation and turn the air very, very blue! It happens at all sorts of random times. My dad will still raise an eyebrow though and say in as sturn voice as he can 'Sarah-Louise!!' but I do notice the slight smile on his face.

Take care honey, and keep smiling,

SarahLou Xx

[MaryB]

Hi Karen, I think I wrote that same post last month. I wanted the exact date when I would be well. I had my SAH 9/16/2011. I feel much better than I did a month ago but it takes time. It is so frustrating., I feel I do not carrying my load at work although they assure me I am doing great. I am less tired than I was a month ago. I take less naps but still need to rest but at least I am not sleeping 4 hours every afternoon. I know I am really better this week as my feet and legs are killing me from working more than my head. Drink the water, rest when needed and the getting better will follow. Take care- it will get better.

Sorry my spelling has left my brain - I cannot have it all at one time! When I read my words I have either spelled it wrong or heard the wrong ( rhymes or sounds like) word in my head. Had that problem before SAH but that is worse now.

Kind Regards, Mary

[Louise]

Hi,

so have been there when trying to explain about the ‘mental fatigue’ its not the sameas a normal person simply being tired, & feeling the guilt but honestly its not just you we’ve all had that.

But that’s a good thing you realizing that you are trying to run before you can walk welldone you.

Blimey that’s part time hours not phased return..

Maybe sitting them down (family) and try to explain how you feel after all what you’ve been through it isn’t like a broken limb and heal quickly it takes time the brainis a very complex piece of machinery.

I admire those that manage back to the workplace for me it wasn’t an option doing something even part time then throw into the mix normal stuff like cooking, cleaning shopping normal stuff I just couldn’t do it (did try) for me to have any sort of a life even with my husband helping the mental physical tiredness was just too much. But I so admire those that can manage....

Take care

Edited February 3, 2012 by Louise

[DawnS]

Hi Karen,

now this is a post I can relate to! I often say I will be glad when the day arrives that I stop discovering things that I can't do anymore! I feel like I am being ungrateful, after all I've survived a serious trauma that not many do. Don't get me wrong, it's not that I'm not grateful to be alive, it's just that I quite liked me as I was. One day I was me and the next time I was consciously aware enough to notice what was going on, I was someone else! Who is this slow, moody (ok, I was always moody!) woman? I ended up having some counselling sessions through a corporate faciltiy provided by work. The guy I spoke to had suffered a brain injury himself many years ago. It has really helped me to calm down. I was feeling quite frantic for a while back there. Is there a facility you can access in a similar way? It might help you come to terms with the changes. He suggested to me that as my bleed was on the left side, making more use of the rest of my brain might bring along some new skills that I did not have before. This isn't guaranteed obviously, but it's the thought that comforts me the most when I'm mourning the losses...maybe one day I'll discover something that I can do now that wasn't there before. What a lovely calming thought that is!

I wish you well, have a nice weekend!

Dawn x