Looking for reassurance

[Carolyn250]

Hi everyone

I hope this finds you all well

 

I am now 5 months post NASAH and with no one to talk to about this I'm just looking for a bit of reassurance on progress - or not! I am certainly improving compared to how I was 6 weeks in but improvements are incredibly slow and frustrating.  Maybe I am expecting too much?

 

I have headaches and neck aches/stifness as a daily constant.  The buzzing/busy head is also pretty constant although when it isn't it's usually when I am more able to do things and feel more 'normal'

 

The memory is pretty bad compared to before too and I have come to realisation that unless we have a major change my ability to work will remain restricted and soon enough I will have to give up and retire. I am self employed so no sick pay and no furlough either!

 

I can't find any rhythm or pattern to this recovery process - is there one??

 

I certainly have several days at a time when i feel OK followed by (often) a week of feeling just and fatigued and "unable" generally. Although I can do easy stuff around the house and but walks out and driving are a bit of a no no

 

I wonder if this is recovery or low mood/depression setting in - I know it's covid and winter so bit of a double whammy!!

 

I have wondered if there are any neuro-psychology services that can be accessed but certaily can't find any - I am in W Yorkshire.  Anyone know of anything??

 

I have contacted Headway but as yet not found much from them apart from practical legal advice etc

 

And of course there are the panics - feeling makes me think things aren't right and there is something else going on or likely to happen.  I know it's not logical but i can't help it!!

 

Any top tips or advice you guys can offer?  Gratefully accepted

 

 

[Karen]

Hi Carolyn,

 

What you're experiencing and feeling is pretty normal post SAH.

 

5 months post NASAH is so very early in recovery terms ... your brain and body is still recovering from the bleed and you're having to come to terms with the anxiety and panic feelings too.

 

Is it going to happen again? - It's a question and something that we've all felt and it takes quite a bit of time to restore your confidence. I know how you feel and everybody else on this site will know too!

 

Are you pacing yourself with your activity? We've all done it, when we've gone completely nuts on a "good" day and then had to pick up the pieces with the dreaded fatigue for the next day or two or even more. Try not to do the same! Just ease into it and do a little extra and let the wonky brain start to heal.

 

Keep up the fluids ... try a V pillow when you're resting.

 

If your anxiety/depression is mounting, phone your GP .. it's common with a brain injury that things aren't working quite the same in a chemical way and we don't get the balance that we had ... it's not always long term, but don't suffer ... I did and for too long!

 

Make the call to your GP ... I was put onto a beta blocker and also a med called Sertraline when life spiralled out of control ... plus I hit menopause too .. I wasn't sure what was causing what ... it's the best thing that I did and wish that instead of struggling, that I'd done it much earlier!

 

I also had a Vit D deficiency and folic acid too ... both made a difference and it was an easy fix with supplements.

 

Not the easiest of times with a brain bleed and covid too ... pick up the phone and give your GP a call ... xx

 

 

 

 

 

 

[weedrea]

Agree with what Karen says. I'd just add that the first year after my bleed I went for a lie down/snooze every day from 6pm to 7pm. Definitely the quiet and dark is good for resetting things.

[Karen]

I agree with Andrea and yes, take time out to put your feet up ... daily....even if you can't snooze. Re-charge the battery for a little while. 

 

Quote

 have wondered if there are any neuro-psychology services that can be accessed but certaily can't find any - I am in W Yorkshire.  Anyone know of anything??

Again, I think that it's a case of contacting your GP and being referred. To be honest, the earlier that you can do all of this, the better.

 

I was offered CBT (cognitive behaviour therapy and counselling) but at a really late date ... it was more my fault and lack of help, as I only accessed it when I was struggling and then a huge delay .. I never went, as I think that I had more therapy with running this website and learning by myself.

 

However, if you can get access to it, please do it ... I never had the info that I have now .. 15 years on and it's been more than a learning curve. Don't struggle. xx

[Carolyn250]

I’ve raised it with GP but standard - “well we can try but with COVID.......”

[Carolyn250]

I spoke to Headway support person today. Really lovely and supportive and saying much as you are - “be patient. It will get easier”. It’s all about managing expectations. If they’d told me it’ll be a year in first place I’d prob be worrying less!! 🙄

[Swishy]

Hi Carolyn,

The thing I found different to deal with was that this is unlike any sickness or injury I had ever experienced....I couldn't gage my improvements as they didn't seem to go in a straight line...I found looking back, say over several months and then a year, was my best gage.  

 

Carolyn, I also had to start looking at where I was presently as opposed to looking back to where I was before the event.  I didn't like doing it and resisted..Today, will be 4 years in the spring, I still hit a wall on occasion but I know it is coming.  I know when I have gone beyond.  I pace myself, better than I ever thought I could. 

 

As said above resting is an amazing way to reset and I do some meditation which I find restful physically and most importantly mentally...

 

I did go for mental health therapy for a bit, that is who got me meditating and stopping and breathing...I always felt all of that was silly, now I know it helps me.

 

I did not have panic feelings I am more of a slow smouldering worry....I am better now .....

I wish you well as you continue your healing...so many folks here with wonderful words, they helped me so much, they still do

xx Jean

 

[Chelle C]

Hi Carolyn

 

 

Some great advice from everyone, i can only agree with what everyone has said.

 

Slow and steady is the way to go with this, your body and your brain have suffered great trauma and they really do need lots of time to recover, i am 6 years down the line and I remember spending much of my first 2 years sleeping and doing things at a very slow pace.

 

I did try and push myself but I did suffer for doing that, i was given some excellent advice when I first joined BTG, that advice was to listen to your body and your brain, they will let you know when you are doing to much, rest when you need to, make sure you are staying well hydrated and it really was great advice.

 

I also suffered with anxiety, the fear that every little twinge or ache in my head could possibly be something going wrong, mixed also with the fear that is was going to happen again all added to my anxiety, then I found out that what I was feeling was pretty much what everyone at BTG had also felt during the early part of their recovery, which helped a lot, knowing it wasn't just me.

 

I did see my GP and like Karen, i was put on a beta blocker which really did help, I was also assessed by a neuro psychologist just over 1 year ago which I found helpful also.

 

As Karen has said  don't suffer in silence, push your GP, they are there to help.

Things do get easier as time goes on, it is a slow healing process, the recovery road can be a bit bumpy at times, we have all travelled that road and we are here for you.

 

Wishing you well as you continue your recovery journey Carolyn.

Love

Michelle xx 

 

[Louise]

Hi there

 

ditto the replies really, keep hydrated, great to hear you spoke to someone from Headway support sometimes just talking to someone helps massivly.

17 hours ago, Carolyn250 said:

“well we can try but with COVID.......”

dont be fobbed off yes covid makes it harder but you need answers push for help - I didnt and suffered for that... 

 

 

[Karen]

Quote

Carolyn, I also had to start looking at where I was presently as opposed to looking back to where I was before the event. 

Jean, I agree and the best piece of advice that I was given, was to measure your progress from the day that you left hospital ... rather than before the bleed, otherwise you set yourself up to fail ... which was what I was doing for quite some time....failing and feeling utterly miserable and despondent with it. Hence why this website exists, through my own failing and falling flat... and having to come to terms with the fact that I was going to have to take baby steps forward and maybe a few steps back with it.

 

I found that once I became a bit kinder to myself and measured my expectations from the day that I left hospital, that there was gradual improvement, baby steps they may have been, but at least those steps were starting to come together ... I was just expecting a lot more and a lot faster but the brain and body said "no"....

 

It does get better and better ... I still experienced recovery many, many years down the line and yes, sometimes you have to push yourself to see what you can achieve to be able to move forward, but then again I've often found that I've paid the price for over doing things when I was having a good day ... and then wind up on the sofa with a blanket over me the next day ... that however, has got less and less....I've learnt how to pace myself and figure out that instead of gardening all day and end up knackered, to spreading it out over two days and finishing up way before I'm starting to feel that my battery has run out!

 

It really is a learning curve and I can only say, that if you have a rubbish day or week in early recovery ... it's your brain telling you to rest up..... Don't dwell on it, throw it away in your mind like a piece of rubbish ... screw up a piece of paper into a ball and just chuck it .... sometimes it's good to get mad (I always used to say that I would have loved to have had one of those punch bags to let rip at) or just go have a cry....I used to take myself off to the bedroom and just sob ...my family always knew where I was heading and I felt a lot better for it!

 

 

 

 

[Chris G]

Great advice above.  I will only add that you should not expect to get better every day, but you should get better every year for a while.  It is a rollercoaster ride of emotions and frustrations.  However, I do believe that you will get better with time.  I did but it took a while (like over a year) for my memory to start to improve again.  Please be patient and stay well.

 

Chris

[GAM]

Hi,

The others advice really helped me. I am doing counseling via tel-med with a doctor who has worked with clients with brain bleeds. It is mostly helpful. I may try another doctor. 

I am almost 6 most post NASAH. I pushed myself back in month 3 because thought I should get ready to go back to work full-time. The ringing in my head increased in volume and doesn't stop...However, the greatest gift I experience is acting kinder and more accepting of myself and not setting goals...my body is the guide. 

I wish you well on your journey.