One step back and forward Feelings

[Daffodil]

Quote

Thank you so much for taking the time to reply to my post ?

You have made it much clearer and given me a few options to consider.

I seem to be going through a 1 step forward 2 steps back phase both physically and mentally/emotionally, is that normal?

 

Jan, honestly On recollection found the second twelve months the hardest. I don't mean to say that to distress or discourage only that at that point things had settled from the really early crazy and high intensity painful time and then I started to appreciate and understand my new limits and see the real changes so it was a bit topsy turvy .

 

That said emotions are affected and when you step back it hits hard. A good cry I have found does the world of good but do follow it up if you feel you would benefit from more help or support. 

 

 

I wrote a little at the time about the sessions I attended a few years back now. There was one on emotional changes in that which you can find in this link below, but in answer to your question I do think it's not uncommon to feel as you are.

 

http://web.behindthegray.net/index.php?/topic/2526-my-neuropsychology-appointment/#comment-35411

 

[Tina]

On 7/25/2016 at 14:54, Gemma B-B said:

Hi Jan,

 

Other people will probably chip in on this too but I would say that the one step forward and two steps backwards is pretty par for the course post SAH (I am now 18 months in).

 

I have days where I think I have got things sorted and have a handle on my issues and my coping strategies for them and then all of a sudden I will be hit with fatigue or forget something and I realise that actually I still don't have it all sorted.

 

I guess you just have to take it as it comes and be prepared to adapt and change around it. The one step backwards always hits me hard emotionally and makes me question things.

 

I have just finished my phased return to work and have settled on some part time hours and even now I second guess myself on them and wonder if I can cope with them or not. I guess I will just have to see how they go and be prepared to change if needed.

 

Good luck with everything.

Gemma x  

Posted on behalf of Gemma

[Greg 21.01.15]

I would agree with Daff, I'm ~18 months down the line, and right now things are feeling tougher than last year. Maybe for slightly different reasons to Gemma, but I guess by now I kind of thought some of the issues that I had 6 months back might have started to ease, I'd be doing better with my phased return to work, the fatigue would be slightly more under control etc. etc.

 

I guess this is the time where, at least for me, there is the learning to accept this is the new normal, and learn how to better manage life to make the most of everything.

 

With my positive hat on for today , one door may close, but another one opens, I'm not a big believer in fate or destiny (apologies to those that are), but right now this is what I have got, so "blow it" time to get on with it, and see where I land up!  

 

Happy Tuesday folks!

 

greg

[Skippy]

Hey there

 

The first year was definitely the hardest for me and the second was a period of acceptance and adjustment.  For me it was about stopping the fight against how I was pre SAH versus post SAH.  Acceptance is a great healer and the adjustment allowed me to push  myself a little further each day, week, month.  My emotions were all over the place and I'm still far more emotional now than I was pre SAH - but hey, you know what - that's what makes me human!!

 

I'm a decade post SAH this year and I work 37 hours a week in a very busy school office where two days are never the same and its never quiet.  I can manage it perfectly well now and have done for the past 5 years.  Feel free to push yourself a little each day, but don't get disheartened or down if you can't - it's about the little things making big differences.

 

Take care xx

[Winb143]

 I don't mean to be frivolous about how you feel Jan but to me the others put 1 step forward and 2 back but I think they are doing the Hokey Cokey  xx lol. Joke All !!

 

Now to be serious we do get good days and days when we wish we never got up, but saying that you would not have heard my  joke !!

 

Keep your chin up and smile a big smile and as I put" if you feel like it only " !!  If not try tonight or tomorrow xx.

 

I remember a day when I felt normal all day, and me and normal don't go but that day I really felt like my old self.  I keep that day close to me as it was near to perfection.   We will get there pal,  and me and Carolyn will sing to you

later xxx xxx 

Stop crying okay I wont sing then lol  xxxx a wee smile as Subs would say  xx

 

 

 

[Gemma B-B]

It is a very interesting idea - when I have thought about it I am not sure which year has been harder (although to be fair I am only half way through the second year).

 

My first year was tough in terms of the immediate aftermath of the haemorrhage and the hydrocephalus. It was a steep learning curve in terms of learning to deal with these. I did, however, make more rapid progress in terms of what I achieved then what I do now.

 

I spent most of that year in rehab and started to make a return to work, although I was still on my sick note for all of this. By the end of it I felt quite happy in terms of what I had achieved and optimistic in terms of what I might go on to do.

 

I would agree that the second year is quite tough in terms of dealing with the long term effects of the haemorrhage. For me this has not just been dealing with the cognitive changes but also dealing with the spinal issues that I have developed as a result of the haemorrhage (arachnoiditis and arachnoid cysts - apparently these are a rare side effect of having a brain haemorrhage and of course mean more trips to the hospital and potentially more surgery).

 

This coupled with my phased return to work have been tough and as I have said previously I have second-guessed myself a lot in terms of whether I am doing too much in terms of this. I am now at the end of the academic year and have settled on a part-time timetable for the next teaching year, so will see what that brings.

 

I agree with what other people on here have said - I think the recovery from this is all about pushing yourself a bit and trying things out and then adjusting as needed. I also agree with the acceptance of things - I spent a while struggling to walk without any aids and once I started to use my stick and my AFOs more things got much easier.

 

For me it is a fine balance between accepting how things are now and pushing slightly to achieve a bit more.  

 

Good luck with everything x

[Daffodil]

Gemma. Spot on. Keep pushing, never give up but always with a care and eye on how you feel and being kind to adjust pace if needed. 

[Pat]

Hi I will be three years in after my subarachnoid brain haemorrhage in November.   I have a few weeks where I think I've turned a corner and think woo I'm on the mend then I have a couple of weeks when I'm really tired, headaches and feeling a bit wuzzy and generally feeling unwell, I thought I'd be feeling much better now and feel it all very frustrating.   Everyone says how well I look but just wish I felt it. 

 

Pat

[Winb143]

I was told I'll never walk but I do but the botty always sticks out lol and after a while back aches and then neck lol

 

We will get there sooner or later, never give up and when down come on here and give vent to how you are feeling.

 

We have all been there and got the scars although they don't show, but we will get there eventually ..keep going forward and see how far you have come.

 

Best wishes

Win xxxxx

 

[Louise]

I find it like the rollercoaster when you think its ok wham good days bad days and weeks then calms down again and so it goes on...

 

On the bad days/weeks always know it'll pass and the better days lie just ahead that's how I see it...

 

The first year is defo the hardest and longest I have never celebrated after the first year on the day of my second Anni I was organizing my Dad's funeral that kind of took away the celebrate thing.

 

[Greg 21.01.15]

Pat, I can really identify with what you say. I am 18+ months out from my SAH, and some days I will wake up and think, yep great cool, all is well, and then set about things and within a short while the effects are all too familiar.

 

For me right now its all about learning to manage my condition, avoid the things that exasperate the fatigue so I can maximise the days where I feel a little more normal. I have a feeling that its going to be an ongoing journey of learning.

 

I have been recommended (as many have) to keep a diary to help try to track what activities can exasperate the fatigue and headaches. I find this the most help when review by my OT, the more objective external view on things is really helpful

 

Good luck with it all, and remember when folks say how well you look that's all most folks can think to say and its meant well. I get that all the time and it can be frustrating especially if I'm having a particularly bad day, but brain injuries are so hard for those that don't have them to comprehend, and people just want to be positive.