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Looking for reassurance - new member Sarah.


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Hi all,

 

I'm new here and so happy to have found this. I’m 8 weeks post NASAH and have been really struggling to understand  what the reality of recovery is. I too have found it non- linear and at this point almost feel like I’m going backwards instead of forwards! Is that normal?

 

I have MRI tomorrow to rule out other causes of the bleed (I think that’s what it’s for anyway!) but am starting to realise that irrespective of an ok MRI result, that doesn’t mean “getting back to normal”. I think my employers will think it means that though - I work in a job where I need to really concentrate and retain large amounts of complex information - I’m not sure if that’s ever going to be realistic again?! I struggle physically (some days more than others) but mostly mental exhaustion - from doing next to nothing.

 

I do have a 3 year old and am a single parent, so that in itself is very challenging at the moment (even though, for now while I am getting paid, he is still going to child care). Apologies if this sounds like a whiny post, it’s actually supposed to be appreciative. It’s really helpful and reassuring to get some insight from people who have been here/ are here too! 
 

 

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Welcome to BTG, I'm sure you will have realised that we can't give medical advice as we are not medically qualified but we can give you lots of support.

Recovery is not like having a broken limb, pot comes off and the fracture has repaired. It can take months or even, in extreme cases, years. You may look okay but your brain has had a serious assault and needs time to heal.

 

You may even find that you end up with a different life. The key to recovery is to take baby steps, if you don't you may well find yourself taking backward steps. Rest and nap when you need to, listen to your body. To help alleviate any headaches drink plenty of fluid. 

As for retaining information, use props like sticky notes or have a notebook and write everything down.

 

Do you have anyone to help you look after your son? If you have ask for help with him, even if it is only for a couple of hours a day. You will not be neglecting him by asking for that help.

 

Have a read through the forums and you will glean lots of information from other member's experiences but bear in mind that a SAH does not run to hard fast rules, everyone is different.

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Hi and welcome to BTG. 

 

8 weeks post bleed is still really early days. When are you planning on returning to work as you need to give this some careful though especially as you have a job that requires so much concentration. 
 

I don’t mean to sound negative but it may be a case of having to redress your work and hours for a while. Concentration and retention is still a problem for me now. I’m not saying you won’t be able to do it but you may find it takes more effort and that will cause fatigue. 
 

You don’t say where you are from is it the UK? If possible have a chat to the Nurse Specialist where you were treated for advice and ask what your expectations should be. 
 

Good luck with your MRI today, they never found where my bleed came from but it was reassuring to know there were no more problems. 
 

Keep us posted and most of all take it slow!

 

Clare xx

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Thank you both for your responses. I am in Northern Ireland and at the moment my son is still attending childcare during the day as he would be if I were at work, so I am getting a break during the day but struggle when he’s here. I’m not sure how long I will be able to send him though as my employment sick pay runs out soon 😬
 

It’s useful to be reminded that it’s early days, thank you! If you don’t mind me asking, how long ago did you have the bleed Clare? 
 

I also find it really tough just to speak to people, even on the phone though I guess that’s normal too.

 

Thanks for the replies. Off for MRI and will let you know how it goes!

 

 

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Welcome to BTG! I am glad you found us. BTG is such a blessing to all of us and I hope it will be to you as well. 

 

I agree with Clare, 8 weeks post is very early stage and with Super Mario that you have to take baby steps. They both have given excellent advice. And yes, ask for help. It might also be helpful to seriously talk to your employers. The challenge with our condition is they and even us cannot see our brains. An MRI may show that it is stable but that is not indicative that it has completely healed and that you are back to normal. Your Doctor, Nurse Specialist or a Social Worker may be able to help you send this message clearer to your employers. 

 

If I may add, be kind to yourself. It's ok to have bad days and embrace the good days. 

 

We are always here for you. 

 

Take care,

Ann

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Quote

 

I also find it really tough just to speak to people, even on the phone though I guess that’s normal too.

Sarah, that's completely normal post SAH and recovery .... If you can get a good friend or a family member to help you out with any important phone calls, then please do ... I know what it's like and many on here will tell you the same. Don't ever be worried to ask for help from family and friends ....you can pay this help back, when you're in a better position to do so.

 

Be honest with family and friends and let them know as to your present circumstances and that you need help ... don't ever feel bad for asking, as I'm guessing that you would help out with the same, if someone that you loved was stuck in the same position?

 

Just tell them .... good friends and family will rally round ...just have the conversation with them.

 

I can only say, that I haven't lost any friends or family members due to the SAH. We still have the same conversation, meet up and have a laugh! I've also been able to pay it forward, when family or friends have needed it and I'm very grateful for their support.

 

Don't carry this alone and give your friends and family a SHOUT...as I'm sure that they will be happy to help. xxx

 

 

 

 

 

 

 

 

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Hi Sarah 

my bleed was 6 years ago in Feb 2015. I can honestly say life has never been the same since but that’s not saying it’s been bad. 
 

I've had a lot a lot of turmoil with work but that’s mainly been self inflicted as I have this tendency to push myself. I’ve changed my job several times since my event mainly because of stress. Funnily enough I have ended up in a job role similar to when it happened but with drastically different hours. I used to work 42 hours a week and now it’s just 22.5. 

 

I’m still floored on a Friday, I struggle with fatigue and have difficulty paying attention. It’s been a struggle and I have had major issues with acceptance. 
 

But it’s not all bad. I feel I have a better work life balance now and it’s good to be able to exchange my experiences with others who have been through the same thing. 
 

You have a 3 year old who will take a lot of your energy, get all the help that you can so you can rest too. I don’t envy you that, it must be very hard. 
 

Take good care 

 

Clare xx

 

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thanks for the replies, it’s so nice to know that there are other people who’ve been here and it really helps with managing my expectations!

 

it will be a month or so until I get MRI results, I feel confident that they will be ok but I am realising that won’t necessarily (and it’s unlikely) that that will be the end of it lol. I also have a tendency to push myself - I emailed my employers from the hospital when I had the bleed saying that I expected to be back in a few days! It’s a learning curve for sure!

 

I do worry about what effect this is having on my son but I guess that’s life and I can only do my best by him and am lucky to have close family to help! 
Thank you! It’s so good to know that I’m not simply losing the plot!! 
 

xx

 

 

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Hi Sarah,

 

I am so happy you found us.  As Super said this is not like a broken limb.  Our brains heal slowly and it is difficult to wait.  I felt like I could see the difference looking backwards better once I realized that I could see I was making progress....having a little one I am sure makes life so much more exhausting for you, rest every moment you can when your body calls out for it. 

 

Good you have family, for help.  

It took me months to find this site and it has been such a helpful and kind place for me to come.  

Take care.

xx

Jean

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  • Tina changed the title to Looking for reassurance - new member Sarah.

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