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Posted

Is it normal to reach a plateau at this stage in recovery? I am 17months post SAH.I feel that up until now I could recognise improvements both physically and mentally and now it's like I'm st a standstill, more down days than before and less stamina and enthusiasm (if that's possible)Has anyone else felt like this? I suppose, as with everything else, I just need to know if its normal.

 

Thank you for reading

Jan xx

  • Like 3
Posted

Jan,

You do get good days and slow days, well I do on slower days when I feel like yuk, I take to my bed  or come on here and smile at your posts.

 

It is the nature of the beast/SAH.  We think we are doing good then, Wham in comes an off day, Tears and feeling sorry for myself and wanting not talk to anyone around me (I Could have put moody moo but thought better of it) Tactful Win!!

 

Don't be disheartened, I woke up and my hand shook and I jumped back into bed with another pill.  Awoke about an hour ago and touch wood feel better.  Holds hand out to Jan "look no shakes".  Now you can either have a good cry and get it out of your system.  Or whatever you like to do as today is your day to do as you want.

 

Hope you feel better. Mrs Normal xxxxx

Love

Win xx xx

  • Like 2
Posted

Win, Thank you, It's good to know that it's not just me, like I wrote before, I have developed this 'need to know it's normal' thing , so annoying as pre SAH  I wasn't a worrier, now  I worry about everything

Thank you again, 

Jan xx

  • Like 2
Posted

Hi Jan

 

You are just behind me in time of recovery. I am 22 months on and must admit I still have bad days. It's so frustrating I agree, when you think you're over it and then bang a day of headaches and fatigue. 

 

My neuro psychologust says it takes up to 2 years and even then the fatigue can last forever.  I think acceptance is the only thing we can do and take the bad days with the good.

 

There is no doubt mine have become more infrequent,  but saying that when they hit it's hard! 

 

You are doing really well,  keep smiling and sewing those bears  ?

Clare xx

  • Like 4
Posted

Hi Jan

 

I don't think you ever plateau its the little things that improve without you realising. Lin is eight years down the line and look at what she keeps surprising me with.  So please keep your chin up sweetheart it seems like its a down day and review this time next year and look at how much you have achieved. Hugs and cuddles sweetheart  xx paul  

  • Like 1
Posted

The way I look at it, as we get older and start to go "downhill" at least we have something to blame it on!

 

I hope you continue to have better and better days.  Maybe the improvements come in spurts with breaks in between?

 

As always, I will send a prayer for you to have more peace and less worry.

 

Chris

  • Like 5
Posted

Big Thank you for your lovely replies, I know I'll have said this before ?(but I have a good excuse for being repetitive!) It never ceases to amaze me how lovely and understanding you all are.

Thank you for always being here for me, I actually can't put into words how much it means to me 

Love Jan xx

  • Like 1
Posted

We all do it Jan, question is this normal from now on, will it ever go away and so on  xx

 

You are doing great and don't beat yourself up on a down day.

 

Love ya pal and keep smiling xx hands out smiles to anyone who might need one xxxx

 

Night All xxxx

  • Like 1
Posted

Hi Jan, you are doing great, i think sometimes it feels like you have come to a stand still recovery wise, but you haven't, as Paul said the improvements are just smaller. The fatigue does lessen, I'm 30 months down the line and still have days where I feel wiped out, can't be bothered with anything and just want to rest.

 

I have met you and i think you are doing amazingly with your recovery. 

Like me you are a worrier.

Take care my friend sending you a hug. 

 

Love

Michelle xx

  • Like 2
Posted

Hello Jan,

 

I'm over 6 years down the line and I still get good days and bad.

It was after the 2 year mark for me that things started to improve. 

You have done amazing, remember how far you have come and try not to be so tough on yourself. Have patience and understanding.

 

Remember that it is OK not to be OK. 

 

I've been having a few issues so have been back to see my Neuro Nurse Specialist and Consultant. Neuro Nurse said to me that there will always be times, for all brain injury patients, that they jog along fine and then something gets thrown into the mix and we don't cope so well.

 

For me personally I think it will often be a case of sometimes I'll take a few steps forward and then now and again I will take some back.

 

Yes, fatigue still floods me. Yes, I still have daily headaches and temple pressure but I am still on a learning curve of the new me.

 

I have learned to plan and pace, but there are many times when things are beyond my control. So I too have to still learn that word patience! I still kick out now and again, rant and rave and throw a paddy! But then I'll pull myself together and count my blessings.

I'm very stubborn!

 

You will be OK Jan, your'll gather strength from those around you and us lovely lot!

 

Sending you big gentle hugs.

 

Take care,

 

SarahLou Xx

  • Like 3
Posted

I was still seeing improvements at the 3yr mark so don't worry.. and sometimes there are improvements, you just dont notice them...

Posted

Big Thank you for your lovely replies, I know I'll have said this before ? (but I have a good excuse for being repetitive!) It never ceases to amaze me how lovely and understanding you all are.

 

Thank you for always being here for me, I actually can't put into words how much it means to me 

Love Jan xx

  • Like 1
  • 4 weeks later...
Posted

Jan,

 

Sorry a late reply to this thread, but thought I would share a conversation I had recently. I had been feeling similar to yourself, that I had plateaued somewhat in my recovery, and I am 23 months post NASAH. Even over periods of months I don't feel there are great differences both in what I can do and the level of fatigue. If anything fatigue is worse as I am trying to do a bit more at times

 

I was somewhat heartened recently after talking with my sister in law and her husband. He had a rather large stroke 9 years ago, and took some fairly big cognitive hits, and suffers from fatigue. From the outside in the early days we could see stepwise improvements in his recovery but as time went on it was less apparent.

 

 However they were both adamant that in the last 5 to 6 years, so up to 9 years out he still is making some significant (and useful) gains. He is now more able to sustain work like activities for longer, and not suffer with fatigue quite so badly. He'll never (as neither will I) get back to where he was but he is doing more of what makes life good for him.

 

My thoughts for the future are that improvement will come from two sources. One naturally our minds heal (albeit slowly) and secondly we learn how to better live with our conditions such that we can learn to maximise the energy we have, avoid what does our heads in, and allows us to do more of what we want. Anyway that's my plan!

 

Good luck with it all, ride those ups and downs, its all character building :-D (so I'm told!)

 

Greg

  • Like 7
Posted

I agree that after around the year mar my recovery seemed to tail off - I made big gains in the first year, but then it slowed right down. I agree with others on here though that I am still making progress, it is just much smaller and less noticeable. In the first year it was really obvious when I went in the hospital from being unable to pass the 'getting dressed test' to starting my phased return to work a year later.

 

Fatigue is always a tricky thing. For me certain things seem to set it off much more than others - such as a lot of noise. This means that I can handle doing a day at work where things are controlled and I have everything set up for me to work in a way that works for me, but spending half an hour in a supermarket can leave me completely drained. It is always a matter of trial and error and trying to work out the best balance.

 

Good luck with it all and don't lose heart.

  • Like 4

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